MSucks! Living with a lesser known disease

It's Over and I Am Alone, Broken and Alone

2011-01-15T12:15:00.000-08:00

And today we were having dinner and he just told me he would never be happy here. He loves me but he is not in love with me and he has decided he is moving home in June. He couldn’t handle the burdens of me and this disease.
He loves me but he is not in love with me and hasn’t been for a very long time. We are two different people and we want different things in life and this is for the best for both of us. I deserve more than he can give me. I deserve a man who will love me like he is supposed to. I have been his best friend and his only friend for 4 years, I have been a mother to his child and he hopes I can continue to do so. I am the best girlfriend a man could ever ask for but he needs to be at home.
Yes, this is two days after he held me and kissed me and vowed to work this out. Promised to try to work this out. Made love to me afterwards. Apparently none of that meant anything to him.
I am an emotional wreck and all I can think about are our kids. This isn’t fair to them, this isn’t fair to me. I am the only mom his child has ever known and he has been a father to my child for over half of her life. And he is going to walk away. And who will be there to pick up the pieces of the shattered hearts?
I deserve a lot of things but I don’t deserve this. I have been faithful, open, loving, caring, dedicated to him. I have been there for him, his daughter, my daughter, our family. I cleaned the house, did the dishes, took care of the animals, and did his laundry, ran his errands, and there was a hot meal waiting for him each night after work. I was there sexually any time he wanted me, I worked my ass off to please him.
I spent 4 years of my life falling deeper in love with each day that passed for a man who doesn’t love me back. His daughter thinks she is coming here in june and she is going to come to live with us and she will finally have the family she has missed out on for the last 13 years. And he is going to take that away from her. Snatch the heart out of her chest and she is going to hurt the most of all of us.
He said we reached a point where neither of us gave a damn enough to fight for this. He was wrong. I would have fought to the death for that man, I would have gladly given my life for him and our family. And he didn’t love me enough to be honest with me when he began having doubts. He kept it inside until it consumed him. This has cut me to the deepest depths of my soul and I don’t know if I will survive this.
He doesn’t love me enough to fight. He doesn’t love me enough to even try to work this out. He doesn’t love me enough to stay. Our family and our life doesn’t mean anything to him because his mind is made up and I have no say in the matter.

Roller Coaster Ride From Hell

2011-01-12T11:58:00.000-08:00

Roller Coaster ride from hell.
Today was going to be a good day. I was determined. I pushed and I pushed and boom, it all blew up and fell into a million pieces around me. I woke up alone. I woke up in pain. Not your regular kind of I am getting old and aches kind of pain, but the kind of pain that reminded me that my back is still broken in 4 places, and I had become such a wretchedly horrible person that the one time in almost a year my boyfriend took more than a day off and he chose to leave me behind and go off with his friends to get the hell away from me.
But, I thought of my 5 things:
1. Pain pills
2. Coffee
3. A 2 hour head start with school being delayed.
4. My Family
5. He was coming home today
So I got up, made my coffee, took my pills, and started my day. I fed the dogs, I watched an episode of stupid pointless TV to get my mind elsewhere and I waited for my kid to wake up. She got up, we hung out, she watched TV, enjoying her 2 hour delay. I got her breakfast ready, I did my makeup, did my hair, and I got ready for my day. I got her off to school, washed a load of laundry, and headed out to my doctor’s appointment. Got a text on the way there from the man, he is an hour away.
I got there, checked in, and saw I had an email. From the man. In it, he told me he loved me, but he was torn between me and his life at home in KY and he misses his daughter and he wants to move back home. He doesn’t want to leave me but he is miserable and he wants to go home in June when the semester is over and school is out for Madi and the lease is up. BOOM! Did my world just crumble down around me? Did everything I have worked so hard to keep together just fall shattering to the earth like the shards of glass that used to be my heart? Yes, yes it did. I got through my doctors appointment. I sat in the parking lot on the phone with my mom for a good half an hour. I pulled myself together. I refused to fall apart. I refused to let the hurt and the anger in. I just refused to feel anything for a moment.
It was like my daughter’s dad all over again. I was emotionally dying, but I would not let it show. I would not lose my composure, not for him. I would not let him see the tears. I came home, a volatile cocktail of emotions. I stopped and checked the mail. SSDI… oh thank God, the answer to my prayers. The letter I have been waiting on for over a year and a half. A decision about my disability claim/appeal. My 7 specialists including my psychologist all say I cannot go back to work. All say I am disabled. In fact, SSDI tells the state of Virginia I am disabled enough to receive Medicaid for the medical costs. I open it…. YUP, Bastards denied me again! No specific reasons other than they agree with their last decision and feel it is lawful. Are you fucking kidding me?? 37 holes in my brain and spine, 4 chronic broken bones in my back, organ failure, bipolar disorder, graves disease, hyperthyroid… a monthly infusion, 15 doctors appointments a month, over a quarter of a million dollars billed to Medicaid last year… and I am denied?? You ever feel like waking up and screaming WHAT THE FUCK at the top of your lungs?
I just sat in my car for a minute, trying desperately to search for the last crumb of my sanity. Is this really happening? Please wake up from this nightmare.
I came inside, and I could not face him. I could not look him in the eye. I couldn’t look at him. I walked passed him and pretended he didn’t exist. I locked myself in the bathroom and tried to clear my head. He came in here and waited, then he left. He went back into the living room. I grabbed a cigarette, walked back passed him and out to the garage. On my way out he asked if we could talk, I ignored him. I came back in and he was in the bedroom, I made a cup of coffee and decided it was time to face this elephant before my daughter got home from school.
So I went into the bedroom. I sat on the bed, and I looked at him. I didn’t know what to say, I didn’t know what to do, and I didn’t know what to feel. So I told him that. I asked what he wanted from me. Did he want me to scream? Did he want me to cry? Did he want me to throw things? What the hell did he want from me? He said “I don’t know”. So I decided to tell him about my day. How my day started off sucky, got better, the bomb of him wanting to leave me exploded and how I had tried so hard to reinvent myself. I told him about the call from my shrink this morning; calling to check on me because my Primary Care Doc was afraid I was about to kill myself. I told her that I already had. I had killed the miserable person I became and replaced her with a woman who could no longer carry the baggage. Then I asked him again what he wanted from me. And again, I got no answer.
His whole email was about the promises he made to his family, to come home after the Army, to be there for his daughter. And I reminded him of the promises he made to me. Promises he made to my daughter, to his daughter to us as a family. For better or worse, that was the promise. Forever and always, it used to mean more than four years. And what about our children? How would this affect them? I am the only mother his daughter has ever known. He is the full time dad figure in my daughter’s life while her father is the fun guy who buys her stuff.
He finally broke down. Told me he was caught in the middle, torn between the two and he asked me what to do. He begged me to tell him what to do. I cannot make him stay. I cannot tell him what to do. I can only offer my honesty. So I did. Honestly, I think his daughter being so far away is his choice. He has promised her and I for years that she is coming here. Our whole life since we moved in together always included an extra room for when she came to live with us.
Life with me is not perfect. This is not the life we planned. No one ever plans on having MS. No one ever plans on their body shutting down and making them incapable of working. No one ever plans on facing their own mortality at the age of 30. No one ever plans to have to be the breadwinner, or to have to depend solely on the other person. If we planned for this, we would spend out entire adult lives depressed and afraid and this is why these thoughts don’t come to the average 30 yr old.
He wanted my opinion of what to do. If it were up to me, I would bring his daughter here, she would live here, we would get married, and he would finish school and we would have a life. We would have a family. We would have each other. Then again, if it were up to me, neither of us would have this disease, we would both be working, we would both be paying the bills and we would be equals. But I cannot make that happen any more than I cane make him stay so it is not up to me. It is up to him. I hate not being in control of things, I hate that I cannot control my own life, my own destiny. I hate it but I have to deal with it. I don’t have the option to walk away. I cannot pack up and leave and not look back. I am the one that is fighting to live.
He finally opened up. The walls of responsibility are closing around him and he is suffocating. He cannot pay the bills as it is so he doesn’t want to bring his daughter here. He cannot keep on top of things no matter how much he works. He works so much to pay the bills because I cannot. He doesn’t blame me, he cannot blame me. He loves me, but he feels so overwhelmed by pressure that he is drowning. He works 12 hour days, goes to school on his days off and he cannot keep the bills paid. It’s killing him. He doesn’t think I am happy or that I ever will be happy because he cannot give me attention when he is home. He doesn’t have anything left to give at the end of the day.
I feel horrible for that. I feel horrible for this whole rotten situation and I don’t blame him for wanting to leave. He works so hard and he never gets a break, never gets a day off where he can just be. Stuff piles up at work or stuff piles up at home and he is constantly running this rat race with nothing to show for it at the end of the day. At the same time, it’s just money. We will always have bills, it is a fact of life. I don’t know what to do anymore. We decided to try to work things out. All we can do is try. But now I live with the fact that I don’t know if he is going to be here tomorrow. I don’t know how to accept that. He has always been here for me through it all, and the idea of him not being here is killing me, but the idea of him continuing this race alone and trying to get the bills paid is killing him, so no one is happy.
I am so lost right now. I am trying to find this happiness in my life that doesn’t seem to exist and each time I think I am getting close I hit a landmine and it all blows up in my face. I don’t know which way to turn. But I know that going straight on the path I have been on will end in disaster.

Getting Through A Crappy Day

2011-01-11T12:12:00.000-08:00

Getting through a crappy day.
How do you get through the crappy days and remain positive? I am finding it hard to do today but determined to make it work if it kills me.
So I woke up at 2am. Had a dream about my fiancé, who is off with his friends in the mountains somewhere, hopefully having fun and “clearing his head”. I woke up and he wasn’t here. He didn’t text me to let me know he was alright. (I know they have no signal up there and his battery was dying when he got there). But I also know they stayed at the hotel last night, he has his laptop and was supposed to charge it and let me know he was ok. It’s not a big deal, but at 2 am it is a big enough deal for me to get out of bed and try calling him with no answer. It sucked. I was alone, I was worried about him, and a part of me was pissed at him. Not because he didn’t call, but because this is the one time he has taken time off from work and school and instead of doing something with the family, instead of doing something with me, he ran away and I am alone and I know he will not get time off again for months. But, I know that he needs this break, and I need to be understanding. And I need to deal with this on my own, even if it sucks.
Finally fell back asleep, and then my alarm goes off. Text message from my mother, cannot respond because my phone has been cut off because the man who is away and can’t figure out his phone is not working didn’t pay the bill before he left. Awesome.
On a chance, I decided to email him. Hoping he has his computer and will get the message. He did. Phone problem straight, bill paid and he is okay. He may be coming home tonight he may be coming home tomorrow. He doesn’t know. I don’t know. But what is new? I don’t know anything anymore. Everything I thought I knew was wrong, so what can I do about it? Not a damn thing.
I have a doctor’s appointment today… as usual. Primary care guy this time, time for our monthly chit- chat session. I tell him what’s wrong he tells me nothing he can do I say I know, he says here’s an antibiotic, see ya next month.
I like this guy. He is brutally honest, doesn’t believe in false hope. He stays on top of my other doctors, he doesn’t promise cures that don’t exist. He fixes what he can and he moves on. He is the only one of my team of specialists who hasn’t told me it is going to be okay because he knows it isn’t. He is the only one that has never seen me cry, but he knows the emotional turmoil I am dealing with. He is the one that told me it is only going to get worse and I need to prepare for that. Surprisingly, that is why he is my favorite. Some days, I wish for false hope, but that is what my neuro is for.
It’s about to snow and sleet here. Schools may be closing early. So far, this day is a bust. I am not feeling the hope or the self love, but I will fake it till it comes. So I got up and did my makeup. I am drinking my coffee and I am writing. I am able to control some things and I will make it through this day.
Things I am thankful for today:
1. No snow, schools opened on time, I don’t have to change my doctors appointments around.
2. My kids- Last night I went out to dinner with the youngest and watched her scarf down a half a rack of ribs. While I was there I got a text from the oldest who tells me she loves my hair because it makes me look more like her, then on the way home, the youngest one tells me that Hello Kitty is Jewish. She meant to say Japanese, but it was funny as hell.
3. My man- even if things don’t work out between us, he has been a big part of my life for the last 4 years and he has been my sole financial supporter for the last 2. If nothing else I have to give him credit for that.
4. Knowing that I am loved- loved by my family, my friends, and all of my online buddies who are also battling MS.
5. The house is warm, the coffee is brewed and I am a cute brunette.
Yes, I dyed my hair yesterday. It came out a great color that I love, but I have been a blonde all of my life, so it is a little strange waking up as a brunette. At least I didn’t go off of the deep end and chop it all off and dye it pink. I thought about it, but I think I am getting too old for pink hair. Besides, my shrink would probably try to have me committed if I did. But it did remind me of the whole Brittany Spears thing, I think I can fully understand why she went nuts and shaved her head one day. She was just tired of being herself, and it is so much easier to change the outside than to change the inside.
I have rambled on enough and I need to get ready to go. I am sure I will be back on later.

Today is a new day

2011-01-09T12:09:00.000-08:00

Well, a lot has happened in the last few days. I was able to share my last two entries with my fiancé. And I learned that he is overwhelmed, frustrated, and filled with resentment for me. He doesn’t feel he can fulfill my emotional needs and he is just too stressed out to find himself. It was harsh. I cried for days. I felt every emotion under the sun. I felt like he just didn’t want to be here anymore. I think I finally hit the bottom.
And then, something amazing happened. I realized that I had spent the last year of my life filled with regret and guilt and sadness, and grief. And I realized that my lack of happiness had nothing to do with the people in my life, with my fiancé. My lack of happiness and my insecurities had nothing to do with the fact that he doesn’t want to be with me, that he doesn’t give me his attention. And I realized that my lack of happiness is probably the cause of all of this. I have been a miserable person and made him and everyone else in my life miserable to be with me. I need to change me. There is only one person in this world that you have the power to change, and that is yourself.
I have been so focused on getting through the days, on what I have lost and what I have missed out on that I forgot to be grateful for what I have. I forgot to enjoy what is still there. I was presented with a challenge. Now, my mom, though crazy, sometimes has good advice. She challenged me to think of 5 things I was grateful for every morning when I wake up. Instead of waking up and dealing with the pain and the frustration, she challenged me to first think about what it is that I am living for.
This morning I thought about my kids, my mom, my fiancé, the fact that I am still able to walk, and the cup of coffee I was about to make. Yes, I am thankful for coffee. I am thankful for being able to get out of bed and go make the coffee, even if the coffee is used to wash down the pills that make me able to get through the day. I am thankful that I have the doctors and the pills and the insurance to cover them all. I am thankful that even when times get rough, the man is still there for me, still by my side. I am thankful for so many things.
I am thankful that I was able to see just how miserable I had become and how it was effecting others. I know that may sound weird but it is true. I took a step back and realized some of the idiotic things I had been doing. Nagging about dishes not being in the sink, nagging about laundry not being in the hamper, angry that he didn’t want to be around me when the truth is, I didn’t even want to be around myself.
It is time to find my happiness. That part is easier said than done. I don’t know where my happiness is. I am determined to find it. I need my own happiness, and no one else will ever be able to give that to me. I need to find my joy in the little things in life, and I need to learn to let go. There are things in this world that I cannot change. Life is not fair, sometimes it sucks. But life does go on. I need to believe in this. I need to go on and stop getting stuck and caught up in things I cannot change.
The man is leaving me for a few days tomorrow. Finally taking some time for himself, to go hang out with the guys and just get away. I am so glad he is finally taking a moment to himself. I don’t know how things are going to be in the future, I don’t know if he will find his happiness, I don’t know if he will be here for me. But I know that in the same way he cannot give me happiness, I cannot give him happiness. Neither of us are ready to walk away from the life we have together, and I sincerely hope we find a way to work together. But that is not something I can force, it is not something I can predict and it is not something I have control over, so I need to take it one day at a time.
I am not cured. The depression is still there and probably always will be. I have a lot of insecurities and I didn’t grow up in a home with a normal or stable family atmosphere, so this is all new to me. A lot of times, I don’t know which way to turn and I question myself a lot. But these are things I need to work on for myself. I have always had control of every aspect of my life and that has all changed in the last 2 years and it is scary. There are times when I am going to be scared, I am going to be insecure, I am going to be sad, but I need to find a better way to deal with it. I need to stop wishing that I had the option to get away for a few days, because this will never happen. My problems are inside of me and they come with me wherever I go. So my new goal is to figure out how to live with it.
Writing seems to help. I think it is because I am forced to sit down and actually sort through my feelings and focus on them one by one. So I will probably be writing a lot more. And I will probably be doing more girly things. Like wearing makeup and doing my hair and nails. Not because I feel the need to impress anyone but because it makes me feel like a girl. It may seem like a small and stupid thing, but it is something for me. I need to stop bumming around the house in my pjs all day and I need to be more productive.
At the same time, I need to recognize the triggers and I need to deal with them. I need to not overdo things and end up fatigued to the point of exhaustion. I need to let my body heal what it can. Yes, I realize this whole thing is I need, I need, I need. But at least I am starting to figure out what it is I need. Hopefully, from there, I can begin to tackle the needs and in the end find my happiness, which is what I want.

Tornado In my Head

2011-01-05T12:06:00.000-08:00

I don’t know where to begin. So many things inside of my head, so many emotions spinning around and so much left unsaid. How do you explain your feelings when you can’t understand them yourself? I feel lost. I feel scared, angry, happy, sad and hurt all at once. I feel utterly alone because I cannot share these feelings. I cannot deal with these feelings so I bottle them all up and walk away from them. I pretend that they don’t exist and I get through the day. Day after day I become more alone and more scared and I cannot find my true self. I cannot find my happiness, I cannot find me and I am lost.
I cannot say I have a horrible life. I have a house, I have a car, 2 kids, 2 dogs, a man, a fish, a frog. I have people who love me, I have a family. My life isn’t bad from the outside looking in. I do have a lot to be thankful for and I know this. And I know that things could be so much worse and I should stop my pity party and move on. If only it were that simple. If only I could I could find the OFF button for the self destruct machine that lives in my head.
I don’t feel sexy, I don’t feel pretty, I don’t feel wanted. What I feel is that I am trapped in this body that isn’t mine and I cannot escape from it. I feel needy and clingy. I feel like I need his attention and I am not getting it. He would rather watch TV or play video games than talk to me and the only time I can get his attention is when we are having sex and I use that as much as I can. And then it is over and he goes to sleep and I lay there wishing he would hold me. Wishing he would want me the way that I want him. Wishing he needed me, wishing we were equals. I have spent so much time alone in this house that it is become both my prison and my fortress.
I am not the person I used to be. Because of this stupid disease I have lost everything that made me me and I have been forced to start over, but each day I feel I have to start over again because each day brings new challenges and new symptoms. I am trying to accept this disease but I cannot accept the unknown. I can accept what is here today but I know that it will change in the blink of an eye and I will be forced to accept what happens tomorrow.
There are things that do not change. The numbness, the pain, and the emotional whirlwind that is so hard to stop that I feel like I am going insane. And yet I fight this disease. I fight with all that I have because I want to be there for my family. I want to see tomorrow even though I already know tomorrow is going to be worse than today.
This disease is trying to kill me. It is killing me. And I am going through the testing and the poking and prodding, the needles and the drugs, and for what? Every month I have to get an infusion that could kill me and it could save me. I would not invest money in the drug company’s stock, yet I have to rely on them to save my life. And I deal with the emotional turmoil of that every month, by myself, alone. I feel like I am fighting for a slower and more painful death. I do this because I have a family that needs me, I have two children who need a mother. I have a man who needs… well, who knows what he needs.
He doesn’t talk to me. He hides things from me. I have to snoop on him to know what the hell is going on with him and when I do I find out he is talking to the one person who has ever caused a problem in our relationship. A person he has sworn to me he will not talk to anymore. I see that he is giving his phone number out to another ex girlfriend. I see him deleting pictures off of his phone that he took at work, pictures he never sent me, and I wonder who he took them for. If he talked to me, if he told me what was going on I wouldn’t be so hurt and I wouldn’t feel the need to spy on him. But I feel like he is constantly hiding things from me, and I wonder if he is faithful, I wonder if our whole relationship is a lie. I wonder why he doesn’t care that it hurts me so much. My friends send me links to websites like online fuck buddy and adult friend finder and he is on there, and I am supposed to trust he would never lie to me or hurt me, I am supposed to trust that he is being open and honest with me. He works so hard to take care of us and our family and I know a part of him resents me for it. A part of him hates me because he is here and his daughter is in Kentucky. A part of him hates me because he has to work so damn hard just to provide for us. And I don’t blame him. Maybe that’s why when he come home at night I get one or two sentences before he shuts me out and turns on the TV.
I know that he loves me. I don’t question that. But I do sometimes question if he stays out of a sense of obligation or if he stays because he actually wants to be here. And that is a scary place to be. Maybe he shuts me out because he is scared and he doesn’t want me to see that side of him. Maybe he shuts me out because he is just going through the motions of life and he doesn’t want to feel. Maybe he puts his emotions in a box and walks away too. I don’t know. I really don’t know anything anymore. I just wish he would talk to me. I wish I knew how he was coping with all of this. I wish that we could have an actual conversation like we used to do back in the days of yore when we were open with one another. We have both hurt each other with stupid mistakes and I don’t know what we need to do to gain each others trust again. I find myself not trusting him, and its not his fault really. I have been hurt so much in the past by stupid men and I find myself feeling that way again. Like something isn’t right, like he is hiding things from me. I hate the way that makes me feel. It makes me feel small and petty, it makes me feel like I have to find whatever it is and I don’t really know that I even WANT to know what is going on when he is not here. Maybe I am making something out of nothing because I am insecure and I feel like I have lost everything and I am waiting to see if I lose him too. A part of me feels like I already have. And I cannot talk to him about it without it being a huge fight. I just don’t have the energy for any more fighting right now.
I have two kids that are wonderful, one is mine and the other was the greatest thing that Alex ever gave me. I never thought I would fall for his daughter and she would have such an impact on my life. But it kills me when she comes to visit and I have to give her back. Especially knowing she doesn’t want to go back. She wants to stay here with us. She has never really had a mother and I am closest thing she has to that. This does put a lot of pressure on me, to fill shoes that have been empty for so long. And I love her. More than words can describe. I am sometimes saddened that I have become her confidant as she tells me things that I do not know how to deal with. My heart breaks when she is hurting, which is happening a lot now a days and I am the only one who knows. She doesn’t see her father the way I do. She sees a man who does not stand up for her, who does not fight for her and she feels unwanted by him. I have no idea how to comfort her when her heart aches because she wants to be here and she has to go. I don’t know how to get her to see the man that I see. Yes, he has his faults but he is here anytime that you need him. He works everyday to provide for us, he goes to school, he takes care of us, and she doesn’t see that because she is not here and that is a decision that he and his father made. It kills me when she is not here. If feels like a part of the puzzle, a part of the family is missing and it is not the same. When I put her on that plane it felt like someone had ripped the heart right out of my chest. It hurt to the point of physical pain. I do realize that a part of me wants her here for selfish reasons, because I love her and I want her close. I want to do what is best for her.
Yes, I do think his parents are financially in a better place than us and they can afford to give her opportunities we cannot. But she has been forced to be an outsider, to be different because she lives with her grandparents and not her mom and dad. She wants a mom and dad, she wants a normal family. I want to give her that, but it is not my choice. I don’t know what hold Alex’s father has on him, but I know that his father has a way of making him feel like nothing, and cutting him to the core and he cannot stand up to him. I don’t understand their relationship and I probably never will. It is very different from my relationship with my mother.
My mother: well, what to say about her? She is there when you need her, she is there when you don’t and she is there when you don’t want her. She is dependant on me because I am the only constant in her life. I love my mom, but I find myself comforting her because I am in pain. I comfort her because I have a disease. I had to comfort her when I found out it was primary progressive. I am her kid, yet I feel like her shrink most days, sometimes I feel like her parent. But she is my mom and I love her. She is crazy. We all know this. Our whole damn family is crazy. If I can say nothing else for my mom, she is there for me when I need her. I don’t tell her a lot of things. I hide a lot of things from her, and I feel guilty for that, but at the same time, I know it is for the best.
I wrote about my father the other day. It was liberating to finally let that out. But it brought back a lot of painful memories and wounds that never healed. It brought back a lot of feelings about my sister that I would rather not have. But it had to come out. I have been living with this pain and this shame for far too long. And now that it is out, I don’t know how to turn off the emotions from it. And I cannot talk to anyone about it, except my shrink who only knows part of the story. I opened a closet of ghosts and skeletons and I cannot figure out how to shut it.
My mind shut out a lot of things that happened with my father, and I know it is for the best. But there is that side of me that feels like I need to know the truth before I can move on and put that behind me. I will never get over what he did and I will never get over the betrayal I felt from my sister. I know that he is dying and I know that until he is dead I will never heal from this. Yet, I somehow feel guilty to wish death upon him, to wish death upon anyone. That is simply not me.
Some days it feels like my entire life has become one big fight. A fight to live a fight to survive, a fight for my relationship, a fight for my kids, just one big fight. Days like today that fight becomes too much. I lose the energy, I lose the will to fight. I pretend the battle isn’t there. I focus on mundane tasks like cleaning or crocheting and I take my mind to another place, another time. I run away from the fight because it scares the hell out of me.
I have an average of 15 doctors appointments/infusions/mri’s/lab tests each month. I see my friends… about once every other month. They all have their own lives and they are all so far away. I miss them. I miss date night with Curtis. I miss Funny Bone Wednesdays with Bryan and Jen. I miss shooting pool with Nichole, I miss just hanging out. I would gladly trade all of that for my family. I live for Sunday nights when we all get to sit down for dinner together. Do you know how pathetic that is?
I need to find something for me, something that gets me out of this house, some place where I am actually needed. That is what I miss about working. I miss having people depend on me to get things done. I miss the chaos, I miss the responsibility. I have tried to make a business of my own, and I have failed miserably at it and it is hard. I gave it all that I had and it wasn’t good enough and that is how I feel about my life right now. I don’t know how to describe it, and maybe it will get better if I ever get approved for this stupid disability thing and I can have some money of my own and I can start doing things. Right now I think the finances are killing me. I have enough money to put gas in the car, buy cigarettes, and get groceries. That is it. There is nothing left after that. I don’t have the money or the gas to go do things, and it isn’t right to ask Alex for money. I hate asking him for money. I hate that I can’t help with the bills. I hate that he works so much and never gets time off. I hate that I am stuck in this place that I can’t get out of. I hate that my emotions are haywire and I hate that I only get one hour a week with my shrink.

Ghosts of my past

2010-12-13T07:32:00.000-08:00

When I was growing up I was taught that the man my mother married shortly after I was born was my father. He turned out to be a child molesting asshole. Fortunately I do not remember the time I spent with him and I can barely remember what he looked like. What I do remember of him were the countless psychologists with their dolls where they asked me to tell them what my father did to me. I remember he went to jail and that is the last I saw of him until I was 18, and that was by chance that he happened to come into a store I worked at. And by chance, I was able to hide in the back of the store until he left.

My mom had another friend when I was growing up. He was her best friend and the closest thing I had to a father. I won’t use his real name here, in part because saying his name over and over would not allow me to finish this story without breaking down. It is a name that has been banned from my lips and banned form my thoughts. Today, we will call him “Mike”. Mike was an older man, 10 yrs older than my mother. At the time that my mother had me, Mike was going through a divorce from a marriage that resulted in two children and one very psychotically challenged wife. What is strange about this is that I grew up around Mike, and his ex-wife who spent a lot of time at his house.

Mike had his own vices. He drank everyday, he hung out with drug addicts, he snorted coke, and in the end, he decided he liked girls much younger than him, but only if they were his children. Mike wasn’t the great knight in shining armor that he made himself out to be but it took a long time for others to see it. Mike’s daughter ran away and got married right after she turned 18. She got as far away as she could and built a life for herself that didn’t involve Mike. Mike’s son… well, let’s just say the apple doesn’t fall far from the tree. He got caught up in drugs and has spent his adult life in and out of jail for one reason or another.

I was 9 yrs old when Mike told me he was my real father. I went to my mom and asked her about it and that was when she told me that there was a possibility that he could be my biological father. She never told me this because she didn’t want to hurt me and she didn’t want to confuse me. To me, this was great news because I always loved Mike like a father and he was always there for me.

Mike was a fun guy. There was laughter and music. He would start tickle fights. Sometimes his tickles would go in places they shouldn’t but it wasn’t so strange as for it to be a big deal. Mike used to play practical jokes. He used to come up to the window that was above the bathtub and yell “boo” while you were in the shower. This began to happen almost every time I would take a bath or shower. And he never yelled “boo” until you looked up and saw him in the window, staring down on you as you were naked and helpless.

There were only 2 bedrooms at Mike’s house. One belonged to my sister. She and my mother could not get along so my sister moved in with Mike, even though he was not her father. Since there were only 2 rooms and “my brother” (Mike’s son) always slept on the sofa in the living room, I somehow got stuck sharing a bed with Mike when I would come over. There were times that I did not remember taking my clothes off in my sleep but I must have because I know I had one a t shirt and undies when I went to bed and I would wake up naked. It was kind of weird, I never did that at home. I believe I was 11 or so when this started happening. Mike used to comment on my body changes all of the time, pointing out that I was getting taller, my hips were getting fuller and I was developing “buds” for breasts. He always paid particular attention to my body.

Mike had a house on a lake that we would vacation at every summer. There were times when mom could not get off of work to go with us and we would go with Mike. It was a pretty cool place and I actually had my own room there. One summer, when I was 14, Mike invited my best friend to come with us, and somewhere during the course of this trip he tried to convince us to go skinny dipping with him. We refused of course, being shy teenagers and all. He had no problem stripping naked and getting in the water with us. I remember waking up the next day with Mike on top of me, naked. He had pulled my shirt up and had one hand on my breast and was holding himself up with the other. I drew my knee up into his nuts as hard as I could. I then pushed him off of my bed and left the room. I went out to the dock and sat there, unable to feel any kind of emotion about what just happened.
When I went back inside, Mike was making breakfast for everyone and pretending like nothing had ever happened. I spent the rest of the weekend avoiding him like the plague. I barely slept at night for fear he would come back and I was jumpy. I was scared of him, scared of the idea of him. Scared to tell anyone what had happened, and a part of me was scared to lose the only father I had ever really known.
We went home. I was too shocked and embarrassed to tell my mother what had happened that week. My best friend spoke up to her mom and told her about the skinny dipping idea and her mom told my mom… you know how the grapevine works. So she sat me down and asked me about it. I cried. I told her about the skinny dipping idea, and I never let her know about the rest. She was livid. She was angry, hurt, betrayed, and she was so concerned about me. She kept asking if anything else had happened, and I kept telling her no. I didn’t want to hurt her anymore than she had already been hurt and I knew if I told her what really happened she would most likely kill Mike. I mean she does have a gun and would literally have killed him. So I didn’t tell her.
Mom stopped talking to Mike after that. My sister on the other hand, well she still talked to Mike. She still talks to him. She allows him to be alone with her children, she has all faith and trust that he is a wonderful man and not the monster that I know him to be. When I was 18, I was at my sister’s house babysitting when Mike showed up looking for her. I slammed the door in his face and burst into tears. I was terrified. A few weeks later, I wrote my sister a letter, telling her everything that happened and begging her to please stop taking her children, my niece especially, around that man. She responded by telling me she didn’t believe one word I said, told me that my mother had brainwashed me into thinking Mike was a monster and that she was not going to stop talking to him, no matter that it killed me inside.

I still have nightmares about Mike. These have changed over the years. The nightmares that used to haunt me were of what could have happened, what did happen, and a complete feeling of helplessness. My new nightmares involve bumping into Mike and himtalking to my daughter. My new nightmare is that my daughter will find out about Mike and she will know that I have lied to her since she was little. When my daughter asks about my father, I tell her he died when I was little. In a sense it is true. He is dead to me, a part of my life that died a long time ago. It is easier for me to think that he is dead than to know that he is alive and still able to hurt people.

It was after all of this took place that I realized why his daughter (my sister) ran away and got married when she turned 18. I found out years later that he had been raping her and she could not stop him. For many years I was angry with her for it. Not angry about what happened but angry that she did not tell anyone. She did not try to stop it, and she knew he was alone with me. She knew he would probably come after me next and she did nothing to stop it. Then I realized my anger was my own cowardice because I had not spoken up. I had done nothing to stop it.
My life began taking a nosedive at this point. By the time I was 16, I was getting in trouble at school, smoking weed with my friends, I became interested in body piercings, sex, drinking, all things I attempted to use to cover up my feelings. I tried to take my mind other places because I didn’t want to face the reality of what had really happened. I didn’t want to think about my first period and the fact that it didn’t hurt when I used a tampon. I didn’t want to think about my first gyno visit when the doctor accused me of having sex and calling me a liar when I told her I was a virgin. I didn’t want to think about the things that my mind had managed to block out for so long. I just didn’t want to see it. I didn’t want anything to do with my sister who called me a liar, and didn’t believe what I told her when she was the only one I ever told what really happened. I didn’t want to have that happen with anyone else, so I didn’t tell anyone else and it ate me up inside.
When I was 19, I started having a lot of depression, this is when I was diagnosed as being bipolar. I went into counselling to help me deal with all of this. I spoke of my concerns for my niece, I spoke of my heartbreak with my sister. I had heard through the grapevine that my father was asking for custody of his ex girlfriends little girl because she was going to jail for her cocaine habit. I decided it was time to step up and do what his daughter never did for me. I decided to stand up and try to stop it from happening to anyone else. So I met with a police officer who took a report. A week later her called to inform me that I did not have any evidence to support my claim and without evidence no charges could be filed. My father was granted custody of this child, she had an illness that killed her a few years later. For some reason I was relieved that this child died so young because I felt like it was the only way to save her. Every time I would go to counseling after that she would try to dwell on my feelings about all of this and try to make me face ghosts that I wanted to bury. I stopped going to counseling after that.

Like I said, my sister still talks to this man. Still relies on him for money, still calls him her dad and still thinks I made the whole thing up. This is the same sister who spent 3 month in jail because Mike caught her writing checks out of his bank account. And who take care of her 2 kids while she was in jail?? It wasn’t Mike. It was ME. Her sister. The devoted sister who stood by her side through all of it. The sister she later called a liar.

I know other people who still talk to Mike. They don’t know what happened between us because I never told them. I know that in Mike’s living room is a picture my sister gave him of my daughter and her children. I know that Mike asks about me every time he sees one of those friends and I know that he knows what is going on in my life.

Because of this, I cannot forgive my sister. I cannot be friends with her, and I cannot get over my hurt which has manifested itself to sheer rage over the last 11 years. Every time I see her, I am reminded that she picked him over me. Every time I talk to her I realize that I do not like her. If we were not sisters, I would not be friends with a person like this. And I somehow feel guilty that I want nothing to do with her. I do not send her pictures of my kid anymore. I do not chat with her and the only contact we have is when she comments on my facebook posts. I see her maybe twice a year at my mother’s house. She does not know where I live and I do not know where she lives and I am perfectly OK with that. We were never close growing up as she was almost 10 years older than me. Aside from genetics, we have absolutely nothing in common. I feel bad that our relationship effected my relationship with my niece and nephews. I feel bad that I am not there for them when their mom and dad have spent the last 14 years making each other miserable. They finally got divorced. She left him for a married man with 6 children and she has no shame in telling the world she loves this adulterous man. I have absolutely no respect for this woman but I would feel guilty deleting her from facebook because she is my sister.
I have never been able to tell her how I really feel about the whole situation. Maybe one day I will be able to, but I do not have the will to start that war and I know my mother will be dragged into it. I know my mother would choose me over my sister and my sister knows this. I think that is one reason she still clings to my father because she knows my mom would choose me. She knows my mom is there for me no matter what and she knows if it came down to saving a life and we both needed a kidney, my mom would give me hers and would let my sister die.

I decided to share this story after writing it because I know there are others out there, others like me who have been through this and I want them to know that they are not alone.

Just fix SOMETHING!

2010-09-14T20:19:00.000-07:00

In the last 2 years, the numb patch of skin on my leg (which lead to being diagnosed with MS) has set off a scientific treasure hunt of every doctor within a 50 mile radius.

What they are currently drugging me for/ treating me for today:
* MS- I now have 36 holes in my brain and spinal cord, all over 55 mm in size.
* Grave's Disease/ Hyperthyroid (which we knew about 10 yrs ago. 6 yr ago we killed my thyroid, but the MS meds have created a zombie thyroid that has come back o life to take over the world.
* 4 broken bones in my spine- 2 of which were from me falling a whole 8 inches (7 months ago), the other 2 are from meds/ physical therapy used to treat the first 2.
* Degenerative Disc and Degenerative Joint Disease
* Osteoarthritis
* Optic Neuritis
* Neurogenic Bladder (my brain no longer tells my bladder how to empty.
* Bipolar Disorder/ Depression/ Anxiety (well, duh, ya think I might be a little depressed?)
* Chronic Fatigue
* Insomnia (yes, I have both)
* Torn Hip Flexor/ Bursitis
* Pinched Sciatic Nerve
And I am sure there are more dx's to add to the list that I may have forgotten... did I mention I have MS and holes in the brain, so I tend to forget things?

And in 2 years time: the countless doctors, nurses, the over 100 doctors appointments, the 30 trips into the MRI machine, God only knows how many needles and blown veins (I would guess this to be around 80 veins, and more needles), and over $200,000 billed to my insurance company... and all of my doctors, specialists, nurses, surgeons, radiology techs, IV Therapy team, at home care... they have all worked so diligently in the last 2 years to...? You tell me. They have been unable to fix the first damn thing! Not a single thing on that list.

They have medicated me, infused me, shot me full of drugs, convinced me to shoot myself with needles, my current pill count is 22 a day plus a monthly infusion... ha and I am still in pain, and I am still broken. I have tried acupuncture, chiropractic (which was helping for pain but I have 4 broken bones in my spine and he cannot touch me), dieting, physical therapy, praying to whichever God would listen, everything short of voodoo and believe me, if I thought it would work, I would try it. I have been banned from: bending, lifting, working, drinking, going outside when it is hot, standing, walking, they tried to ban me from sex! They are working so hard to save my life but they have not realized that I no longer have one.

At this point, I wish to take this list and attach a reward. The first doctor who can fix one thing... I don't care if it is the back, the thyroid, the bladder, or whatever. But it has to be one of the things on this list... so let's start a collection for the reward. You guys want money? Body parts? I will give you a kidney and two ovaries full of eggs that I am not using! Anything you want. JUST FIX SOMETHING!! I have lost all faith in the medical community at this point. Or maybe it is just Virginia Doctors and I need to move?

So, I am scheduled to go in Thursday for cortisone injections in my hip. I am not wagering any money on whether it works or not. I am curious to see if this doctor can do what no man has done before, or if he will be your typical doc who fixes nothing and finds something else wrong with you. I am trying to be hopeful, but this is the same doc who sent me to the surgeon about my back. I set myself up for a huge disappointment with that one. Bouncing off of the walls excited that I would be getting the surgery and it would make the pain in my back ease up some, only to have those dreams crushed and being sent home in tears.

Yes, I have become angry, and bitter, and frustrated. I will not apologize for this. I have been playing lab rat for 2 years and it sucks. Oh and that is not the whole list of what they have found in the last 2 years, this is just the list of things that decided to "treat".

Life sucks today... and yesterday... and they day before that...

2010-09-09T12:20:00.000-07:00

I am dying. And I know that I am dying. My body is systematically shutting down piece by piece and no matter how hard I try to fight it, it will not stop. It’s hard to face your own mortality, especially when you feel like a prisoner trapped inside of your own body. I am depressed, and I am in pain, and I am lonely. Even in my own house surrounded by the people I love the most, I feel so alone all of the time.

I can’t talk to them about it. And even if I could they wouldn’t want to talk about it. For my friends and family, the idea that I am a mere mortal is somehow unfathomable. I should live forever and pretend that I am not dying. Maybe if we ignore it, it will go away. Maybe if we fight harder, it will stop. But don’t you dare give up! You are not allowed to give up.

It would have been so much easier if I had lost my mind first. At least then I would not know what was going on. I would gladly welcome insanity if it meant not fully comprehending the reality of the present. I would choose death before deciding which part of me I want to sacrifice to save the other, yet that is exactly what I am doing. Too many people depend on me and I made a choice years ago that no longer allows me the luxury of the self indulgence of death.

I am smiling on the outside but on the inside I am screaming, calling out in vain for help, for mercy, but they never come. I awake in pain every morning as a reminder that is my life. I want to run away but I know it would do no good. I simply cannot shed my body and run away. This monster lives inside of me. It is taking my body and destroying my soul one poke at a time.

I can scream, and I can cry, and I can throw things, and I can fight this, but it would still be here, this monster inside of my body. I cannot escape it, and I am not yet ready to give into it. So what do I do? I am so tired of doctors and specialists and nurses and medications and needles and … I am just tired. I keep running the gauntlet and I keep fighting and at the end of the day I am left wondering if it is even worth it. Is it worth the energy and the pain and the side effects? Is it worth giving up my life, everything about me and everything that I was, trading it all in to be the patient? Doctors are working diligently to save my life but I ask what life they are saving? Who are they saving because it damn sure isn’t me. I do not know this person I have become. I do not like this person that I have become, in fact I hate this person. I mourn the loss of my old self. Yet it’s her reflection I see when I look in the mirror, another reminder that this is really happening.

Why does life have to be so damn hard all of the time? Why can’t I get good news from a doctor just once? Why can’t I wake up and not feel the weight of the world closing in on my and watching it shatter and fall piece by piece? Am I ever going to wake up from this nightmare? How much can one person endure before they reach the breaking point and just lose it?

The Enemy Inside

2010-07-28T07:29:00.000-07:00

There’s an enemy in my body, slowly chipping my life away.
I can feel it all of the time, it’s with me every day.
I am so tired of hurting, tired of the constant pain.
It’s killing my body, making holes in my brain.

There’s an enemy in my body, making me lose my mind.
The path back to myself something I may never find.
I am fighting a constant war, which no one else can see.
Trapped in my own prison, I will never be free.

This enemy in my body leaves me feeling broken, tortured, and scared.
New demons to face tomorrow, constantly feeling so unprepared.
There needs to be an answer, there needs to be a cure.
I cannot take this sorrow, this pain I cannot endure.

There is an enemy in my body, reminding me this battle is wages on inside.
With each breath that I take, I face an emotional whirlwind inside.
Not ready to give up yet, this monster I want to fight.
Each day it reminds me that it is taking away my life.

Coping with Numbness and Decreased Genital Sensation

2010-04-21T09:59:00.000-07:00

Genital numbness how to cope…

Did you know that over 80% of men and women with MS are effected by sexual and intimacy problems? This is not surprising when you consider that one third of women in the general population cannot achieve orgasm with penetrative sex when there is no clitoral stimulation. One of the more pressing issues for both men and women with MS or other neurological disorders is a loss of sensation, not only in their limbs but also in their genital area. So how does one cope with this loss of sensation and maintain a healthy sexual relationship with their partner?

I have said it before and I will say it again; there is a lot more to an intimate relationship than sex. That being said, there are some things you can do by yourself or with a partner to keep your relationship on track when those numbness issues arise. I have gotten advice from several people on this topic and I would like to thank each of them for their input.

Some things to consider:

Talk to your doctor- This is easier said than done, but like your other MS symptoms you should be able to talk to your doctor or nurse about sexual problems you are having. Believe me, there is nothing you can say that they have not heard before, especially an MS specialist. Your doctor may be able to prescribe medications or change the dosage on your current medications that may be aggravating your sexual symptoms. Certain medications, especially anti-depressants are notorious for not only decreasing your sex drive but also decreasing you ability to achieve orgasm. Seizure medications that are often prescribed for hypersensitivity can also lead to numbness in genital areas. Sometimes it is just a matter of changing the time you take certain medications. Your doctor is an invaluable tool for your wellbeing and sexual health.

Toys, Vibrators, Clitoral Stimulators- There are so many sex toys on the market today, each designed for different purposes and needs. Vibrators work wonders for loss of sensation especially this meant for external stimulation such has clitoral stimulators. There has also been a boom in the industry for toys geared towards helping men achieve orgasm; from oral sex replicators to prostate massagers and vibrating rings. Toys come in so many shapes, sizes, colors, and materials that I can honestly say there is something for everybody out there. One that I highly recommend to almost everyone is to try a vibrating cock ring with a clit stimulator. It is a toy that is used together, the vibrations are an added stimulation for both you and your partner.

Lubricants- There are many types of lubricants on the market today. From water based, to oil based, scented, edible, or even warming gels. The latter have been shown to be effective for those who still respond who hot and cold even though there may be a loss of sensation or numbness. For those who suffer a loss of sensation or have a hard time achieving orgasm, lubricants can help reduce friction during intercourse making penetration more enjoyable.

Oral Sex- Some people, especially women find that oral sex is more pleasurable than penetration when they are experiencing loss of sensation or numbness due to increased focus on their outer genitals and clitoris. Mints and those Listerine strips make for great fun in the oral sex dept and help increase sensitivity. Some novelty companies go so far to sell mints specifically manufactured to be used during oral sex. Ice can also come in handy during oral sex.

Ice or Heat- Can be used to help increase sensitivity also. A lot of times, when there is numbness in an area there is still a sensation with hot and cold. Try alternating and see what works best for you. This is when I would recommend trying some of the liquid filled E-Glass toys that can be placed in the freezer or in hot water to change the temperature. There are also some amazing vibrators that include infrared heat, which give you both the heat and multi-speed vibration for added pleasure.

Electrical Stimulation- One of the newer toys that recently peaked my interest was one a friend inquired about called the Violet Wand. It is almost like a tesla ball for your sensitive areas. It looks quite interesting, but it is very expensive. There are much less expensive options out there from TENS type of units to electric anal plugs. These have proven to be very effective for a lot of people, but be advised there risks associated when you bring electricity into the bedroom. Be sure to read the risks and take the necessary precautions as advised by the manufacturer.

Kegel Exercises- Kegel Exercises work great for keeping your pelvic floor or PC muscles toned, and they are not just for women. Men can also benefit from toning their pelvic floor muscles. The muscle is similar in both men and women, stretching from the pubic bone to the tail bone and forming a hammock-like floor that supports the organs of the pelvis and contributes to the function of the sphincter muscles. Kegel exercises have multiple uses for men and women. They are most commonly recommended to help with bladder and bowel control. Keeping your PC muscles tones will also help alleviate menstrual cramps, and ease childbirth. Sex can be more enjoyable by both parties as the toned muscles will contract better during sex making it feel “tighter” for the man and also giving stronger contractions during orgasm for a woman. For men, Kegel exercises aid in achieving an erection and can also help prevent premature ejaculation, as well as helping to maintain prostate help. The exercises are easy to do and can be completed anywhere at anytime. I will go into more detail about the importance and proper way to exercise your Kegel muscles in my next article.

Body exploration- Just because you may be numb below the belt, that does not mean that there are not other places on your body which would be pleasurable to touch. The best way to do this is to explore one another’s body. A fun game would be to blindfold your partner and caress different areas of their body with different textures (like feathers or a hair brush). This may be a good time to play with heat and ice. Use your hands or mouth to explore one another. You find sensitive areas you may have forgotten about over the years. Relax and have fun.

Changing positions- Some positions give greater access to more sensitive areas of your body. One that was recommended was to try placing a pillow or wedge under your hips to elevate your genitals during intercourse. Another recommendation was to hang your head over the side of the bed (not really sure how that works to help achieve a better orgasm, but what the hay?). Sometimes all it takes is a quick flip or a tilt of the hips to reach that coveted orgasm that lurks behind the numb outer shell.

Electrical stimulation to treat Erectile Dysfunction?

2010-04-07T06:58:00.000-07:00

I was caught up in an article earlier about electrical stimulation in various parts of the body. There are many claims about electrical stimulation(ES), but one in particular I was interested in finding more details about and I cannot seem to find any conclusive answers online.

I have seen products advertised with ES such as the belt that goes around your waist which supposedly tones your muscles and gives you great abs without working out, or the one that is made for women that does essentially the same thing to increase breast size. Some of you may remember the experiment with this particular device last summer. For those who don’t, I was asked to review this product which was a 6 week (twice a day) experiment. Although I did see an increase in firmness, there was no increase in size.

The newest one claims to have the same effect on men in the treatment of ED. The theory is, by applying ES the muscles of the penis are stimulated, or exercised therefore making them stronger and more sensitive to other forms of stimulation. I am wondering if this is theory rings any truth? I mean, in theory it sounds plausible. But in actuality, does it work? And does the result outweigh the risks?

“While it may be true that EMS does enhance muscle growth and recuperation, there is no clinical or therapeutic evidence that it causes muscle hypertrophy in normal individuals at this time. Electrical stimulators definitely get your muscles moving and you do feel as though you worked out. However, they do not provide the resistance that weights do. The electricity forces your muscle to contract and the part of you body attached to the muscle moves”(Rutgers). But with a lack of weight or resistance being added, it is unlikely that you will see any significant muscle mass from this therapy.

Obviously playing with electricity comes with risks: shocks, burns, infection, tissue damage, interference with heart function, to name a few. When I think of electrical stimulation, the first thought that pops into my head is the TENS Unit. “TENS” is an acronym for Transcutaneous Electrical Nerve Stimulation. This unit works two ways. One, it interrupts the pain signal going to the brain from the effected area. Two, it also increases endorphins (the body’s natural pain killer). Which of course leads to question the validity of the second part of the claim; how does ES help increase sensitivity to other forms of stimulation on the penis?

Feeling attractive when you have MS

2010-04-03T11:05:00.000-07:00

One of the most common complaints that I have heard from fellow MSers is “It is hard to feel pretty when you are having an attack”. And this is very true. Balance issues deny you the ability to wear those sexy high heeled shoes. The creepy crawly skin feeling makes wearing clothing unbearable and you can forget about the frilly lacy lingerie. You stumble around like you are drunk, for many of us, we are dependant on wheel chairs and walkers. The bruises that accompany the injections and the blown veins from the IVs don’t help us to feel anywhere close to “pretty”. A lot of days, spending time on hair and makeup robs us of the energy we need to complete other tasks, like getting dressed. The lack of sleep has left dark circles under our eyes, and the fatigue makes us want to crawl into a ball and sleep for days. MS tends to rob you of that sexual image you once portrayed.

When I brought up this issue with my neurologist she gave me an invaluable piece of advice: Ignore messages and stereotypes about beauty from television, magazines and other media sources and embrace your body for what it can do. My best advice is to try to take a day off for yourself whenever you can. There are going to be days, weeks, sometimes months when this is impossible. For me, I pick a day when my daughter is at her dad’s and my significant other is distracted with some other task (work, school, yard work) and I have the day for myself.

As much as I would love to spend the day at the spa, it is one of those luxuries that I simply cannot justify. Plus, for me I enjoy doing these things at home more than in the care of strangers, and if I want to take a nap, no one can stop me. I start by turning off my cell phone, stepping away form the computer and locking myself in my bathroom.

Start with a bubble bath. Amazingly simple, isn’t it? You may notice that you can no longer enjoy the steamy hot baths that once were. But a warm bath, light some candles, put on some soft music and add your favorite ingredients. For myself, I make my own bath salts which I keep in stock in different scents in my bathroom for this very occasion. Glass jar, 2 cups Epsom or sea salt, 4-5 drops of your favorite essential oil (I like lavender or sandalwood, sometimes I mix sage and citrus), and ½ cup dry milk powder. Mix it all together just as much or as little as you like, I also add a drop or two of food coloring which changes the color of your water and does not stain your tub! The result: Your skin feels great, you smell great and you are ready for the rest of the day…or a nap, but this is your day so do what makes you happy.

Next I like to move on to a pedicure. It is amazing how much prettier I feel with a new coat of polish on my toes. And I enjoy the shockingly bright colors on my toes for some reason, it lifts my spirits.

You see where I am going with this. No one feels pretty when they are stressed out. You need to take one day where you can put all of your problems into a box and leave it there for just that day. The problems are not going to go away, so put them all off for another day. This is easier said than done and it is going to take some practice. It is not selfish, you are not robbing anyone else of their needs, and I promise you the world will not cease to exist because you took a few hours off for yourself. Yoga, Tai Chi, Meditation, prayer, exercise, sex, focus on things that take your mind elsewhere, even if it is just zoning out in front of the television.

As far as the clothing and shoes, there are some days when we just have to admit it just isn’t going to work. But that should not stop you from feeling good about yourself. Those sexy high heel shoes you have sitting in the box or on the shelf that you no longer have the balance to wear? Put them on while you are laying in your bed. Maybe instead of that tight lacy lingerie you would be more comfortable in a silk robe. If clothing and lingerie are too cumbersome, I recommend having fun with body paints. They come in a vast range of colors or flavors. This is a joy you can share with your partner. Let them paint your body, or write silly messages on yourself for them to read. Have fun with it. There is a lot more intimacy in a relationship than just sex.

If you have the energy, put on your makeup, style your hair, shave your legs… all of those things you used to do when you had the luxury of doing them. The one thing you need to remember is not to over do it. Your day should not leave you exhausted and cranky. Some days you have to feel pretty from the comfort of your bed, other days you can climb mountains. Exercise when you can. This doesn’t mean you have to run a marathon, but even if you are physically disabled there are things you can do for yourself to get moving.

The one piece of advice I can offer to the significant others: Make your partner feel pretty, show them you appreciate them, kiss them like you mean it (even when they are still in their PJ’s at 4 in the afternoon, and they just don’t feel pretty). Do things together that you both enjoy even outside of the bedroom. And accept that sometimes, our bodies just won’t do what we want them to, and it is frustrating. There will be days when there is numbness, or performance issues. As I said earlier, intimacy comes in many forms, not just sex.

Take time to get to know your body. Learn what your likes and dislikes are, learn what is comfortable to you. For a vast majority of MSers, sensory changes are ever occurring; things that used to feel good may now be painful. Numbness changes everything. Your body may be changing everyday, and you need to pay attention to it. Don’t try to force yourself beyond your abilities, but instead rejoice in those abilities. When you learn to relax and let go of those stereotypes and embrace your own abilities, you will discover a whole new level of feeling attractive.

MS and Sex new series

2010-04-03T08:57:00.000-07:00

I have been asked to combine my two blogs. You see, I sell sex toys for a living and I have had a number of questions for both MSers and their significant others about sex and the lack thereof. I will admit that some days I feel like the impotent condom salesman because of the MS flares. Because I have MS, this does not mean that my life is over; and neither is my sex life. Though I have had to make some changes and bring in a few aids at times. Which is why I want so desperately to address the issues of the neurological, and psychological effects that MS has on your sex life and offer advice to overcome some of these obstacles.

I started on a mission to write this amazing article, and then I realized it was just entirely too long. So I have decided to address these issues one at a time. I am very excited about this new venture and hope you all can join me on this mission to inform and add suggestions. I would love some feedback on these articles and if you have any suggestions that I may have missed please feel free to comment. Also if you have any questions or issues that I may not have addressed, please feel free to email me privately or you may post a comment (warning, they are public).

I will do my best to answer your questions to the best of my ability. I am by no means an expert, but I do enjoy a good research challenge. And you will see a lot of the sexual issues addressed aren't necessarily MS specific.

Email: alonetimepleasures@gmail.com

Update!

2010-03-30T17:44:00.000-07:00

I got a call on 3/22/2010 from the SSDI worker who I have been hounding for the last 2 months who needed additional employment information. I was told they finally have all of the paperwork from all of the doctors and a decision will be made that day and I would have the decision in writing int he next 2 days.

Of course I got no letter. And I waited and I waited.

On 3/24/2010... I check the mail, no news from SSDI. I check the website, no news from SSDI. I call the 800 #, and I am told "according to our files your case is still pending and we have until may 20th to give you a decision". I call the case worker (the same guy who called me on monday to tell me a decision will be made that day).... and it rings and rings and rings and rings, no voicemail, no press 0 to be directed to an operator... just ringing. Ok, maybe he is at lunch (it is 12:45 at this point). Nope. No dice all day.

On 3/25/2010, I was FINALLY able to get through to the operator at the Fairfax SSDI office. I explained to her the phone issues with trying to reach my case manager... Oh, they changed the number and didn't bother to notify anyone. She was able to put me through to his voicemail.

03/26/2010 He calls back. The system (which we all know is flawed, to say the least) is that he collects all medical info and makes his determination if he decides that you are indeed disabled it goes to their doctors for another medical determination.

The doctors on their team apparently were confused about 1 of my cervical MRIs. That is 1 out of the 7 Cervical MRIs that they have on file. But they were confused about the ONE and why the lesions had tried to grow together into one big mass. I was told that a decision had been reached and said decision left the office this afternoon and I would be notified by mail in the next few days (monday, the 29th) By law he is not allowed to tell me yes or no over the phone.

Today is Tues 03/30/2010. STILL NO NEWS!! Yes, it has been 9 months, and 17 days since I filed for disability. And I still do not have an answer from anyone on this matter. I am beyond frustrated and ready to sue each and every one of them if given the opportunity to just for the mental BS they have caused.

Another letter from the Health and Human Services guy?

2010-03-29T16:56:00.000-07:00

This is in reply to your email requesting to appeal the denial of a prosthetic device (brace).

I was informed that the Department of Medical Assistance Services’ Appeals Division is attempting to schedule a hearing for Tuesday, April 27, 2010, at 10:00 a.m. You should receive a letter in the near future about your hearing. I assure you that you will have a full and fair opportunity to present your case at the hearing for this appeal.

Thank you for letting us know of your concerns. I hope that this information is helpful.

William “Bill” A. Hazel, Jr., M.D.

Secretary of Health and Human Resources

1111 East Broad Street

Richmond, Virginia 23219
************************************************************************************
Did I mention the state of Virginia is run by morons?? They have requested an appeal, which I did not file because the device I needed when I broke my back is absolutely useless to me at this point...unless I re-break my back!

My Response:
Unfortunately I will not have a full and fair opportunity to present my case. I broke 2 vertebrae in my spine on Feb 12, 2010. It is now the end of March and it will be the end of April before the hearing. At this point the brace that would have aided in my recovery is completely pointless. It is like someone breaking their arm and then fighting 3 months later to get a cast. At that point, the arm would have to be re-broken to fit the cast. As I stated in my original letter, we do not yet know the irreparable damage done to my spine that could have been prevented had I been approved for the brace.

I was denied for the brace initially because I am over the age of 21. And the final decision was based on the fact that I was not in "in-patient intensive therapy". Apparently if you are over 21 and living with an incurable disease that has left you disabled and unable to work therefore forcing you to become a Medicaid patient, you are not allowed to break your back or sever a limb as it is not covered unless you are under the age of 21! Thank God I didn’t break my arm and have it sticking through the skin; I would still be waiting for the cast. This is a ridiculous system that is flawed to say the least. Yet, Medicaid approves all pain medications with no questions asked.

As of today’s follow up with my Orthopedic doctor, the bones are still broken but healing, I am still in extreme pain, and the brace is absolutely futile at this point. I am asking you to look into this so that no one else has to go through what I did if ever they find themselves in the same predicament.

I have been fighting for SSDI for the last 9 months, and I have twice been told a decision was made and I should be informed by mail on two separate occasions, yet I still have not received a determination. Had they not kicked my application out the first time that they lost the paperwork I mailed them, I would have had a decision on the appeal that I filed. Instead, the application was not only denied, it was kicked out of the system entirely which made my appeal void, and I was forced to apply a second time. I do thank you for looking into this matter for me, it seems to have at least gotten the case to the medical review doctors. I am hoping to have the decision that was supposedly sent last week any time now.

I do also thank you for looking into the Medicaid issue on my behalf and thank you for getting back to me so quickly. But this is a regulation issue that needs to be addressed with the Medicaid system. I do not see how an item that is prescribed as medically necessary to treat a fracture can be denied based on age.

Hey, I got a response!

2010-03-23T09:24:00.000-07:00

This is in reply to your email to Governor McDonnell indicating the difficulties that you are experiencing with your application for disability benefits.

I contacted Ms. Gale Pierce, a specialist with the Disability Determination Services (DDS). The DDS is a part of the Virginia Department of Rehabilitative Services, which is state administered and works with the Social Security Administration (federally funded) in processing applications for disability benefits filed by the citizens of the Commonwealth of Virginia.

Your email expressed your concern of deteriorating health issues, financial stress, and having to resubmit an application because the initial claim was lost in the system. Ms. Pierce contacted the Regional Director and was informed that the DDS office received your claim on January 20, 2010, and it was assigned to an analyst. Case development activities have been completed and the analyst is waiting for some medical evidence. The Regional Director will give your claim appropriate consideration to expedite the process.

I also encourage you to contact 2-1-1 VIRGINIA, an information and referral service that provides information about a variety of programs and services in your area that may be helpful. This service is quick, free and confidential. You may access this service by simply dialing 2-1-1 on your telephone or visiting the website at www.211virginia.org. Though most of these programs have income limits, they are sometimes able to look at a person’s situation with regard to actual expenses and offer at least some limited assistance.

Thank you for writing and sharing with your concerns, I hope that this information is helpful to you.

William A. Hazel, Jr., MD

Secretary of Health and Human Resources

1111 East Broad Street

Richmond, Virginia 23219

I wrote a letter to my Congressman, and both Senators today.

2010-03-15T08:31:00.000-07:00

Please allow me to introduce myself. I am a US Citizen, a Virginian, a tax payer and a voter. I am also a mother, daughter, sister, aunt, and the future wife of a US Soldier. I am 29 years old, and my world came crashing down around me in October of 2008 when I was diagnosed with Multiple Sclerosis.

“Multiple Sclerosis is an autoimmune disease that effects your brain and spinal cord. The body’s own immune system attacks myelin, the fatty substance that surrounds and protects the nerve fibers in the central nervous system. The nerve fibers themselves can also be damaged. The damaged myelin forms scar tissue (sclerosis or lesions), which gives the disease its name. When any part of the myelin sheath or nerve fiber is damaged or destroyed, nerve impulses traveling to and from the brain and spinal cord are distorted or interrupted, producing the variety of symptoms that can occur”. The really interesting part of this disease is that these lesions do not effect the same exact spots on any given person, which means no two people have all of the same symptoms and no two cases are alike. This being said, there are over 300,000 different forms of this disease in the United States today, with and average of 200 new cases being diagnosed each week.

Please allow me to give you a brief summary on the effect that this disease has had on my body so that you may understand the frustration, and disappointment that I have experienced with the Virginia SSDI and Medicaid offices. When I was diagnosed, the MRI showed 4 lesions on my spinal cord and 7 lesions in my brain. Today, there are over 37. What started out as a numb patch of skin on my right calf turned into my entire leg going numb. This is what caused me to see the doctor, and with the help of 2 specialists, an MRI, blood work, and a lumbar puncture it was concluded that I have MS.

Since that day, I have experienced:
• Numbness all over my body (mostly in my legs and right forearm).
• Optic Neuritis
• Migraines
• Depression and Anxiety
• Insomnia
• Fatigue
• Arthritis in my lumbar spine
• Balance and coordination problems
• Muscle spasms in my back and legs
• L'Hermitte's Sign (electrical surge feeling from neck to limbs when you bend your head)
• Girdle band pressure (referred to as the MS Hug, it’s like being attacked by a Boa Constrictor)
• Crawling skin feeling that increases with warmer temperatures
• Stabbing pain in my neck, between my shoulder blades and a crushing feeling in my lower spine.
• Night Sweats
• Cognitive issues (memory and concentration problems)
• Neurogenic Bladder (requires self cathing)
• Joint pain and stiffness

These are not all of the symptoms that I have had from this disease, to list each and every one would take days. This does not include the side effects of the medications used to treat the disease or the above symptoms. From the medications I have experienced Urinary Tract infections, yeast infections, hives, swelling at the injection sites, nausea, constipation, excessive weight gain, blown veins, withdrawals from certain meds, heartburn, and the list goes on and on.

I am no longer able to work, and can barely function on a daily basis from this disease. I have lost my feeling of independence as I have to rely on my family to help me with simple tasks (cleaning, cooking, getting to and from doctors appointments, and anything else that needs to be done) that most people take for granted. I am fortunate that I am still able to walk, but I can only do so in short distances and am in excruciating pain after standing for more than 20 minutes. I am no longer able to run and play with my daughter, I can’t just jump in the car and go when I need to get somewhere. Staring at a computer screen or trying to read for more than an hour causes the Optic Neuritis to act up. I am trying to learn to adjust to this new life, but each day brings new symptoms and new challenges.

I was laid off in Jan of 2009. By Feb, the numbness and balance problems had gotten so bad that I was no longer driving as I could not feel the pedals under my feet. The numbness is a constant problem, the balance issues come and go. I had 14 MRIs done in the first year of being diagnosed with this disease and I have not had a single one that did not show new lesions.
In June of 2009, I realized that I would not be able to return to full time employment and I applied for Social Security Disability benefits. I was sent an email several months later requesting further information, which I submitted by mail as requested by the SSDI office. I then received a denial letter stating that the requested paperwork was never received. At this point I filed an appeal and resubmitted the same paperwork. Another two months go by without a word from this office. I called to check the status on the claim and I was informed that I would have a decision by Jan 15 of 2010.

Early Jan 2010, I get a call from the SSDI office informing me that they cannot process my appeal because when they denied me the first time, my application was taken out of the system and I now have to reapply and start the whole process over. I asked to come to the office and have a case worker assist me with this application. That appointment was on Jan 15, the day I was supposed to have a decision regarding this appeal. The application was filed again, along with every doctors note and MRI report that I have in my possession. I am told on this day I will not get a decision for another 3 to 4 months. I had been fortunate enough to receive unemployment benefits until Dec of 2009. At this point, and to date, my only income is the $500 a month I receive as child support. I was told by the SSDI case worker to go to Social Services and apply for assistance and Medicaid. I was approved for Medicaid and food stamps and that is it. The rest of my bills are falling further and further behind each day and it seems my credit score is deteriorating as steadily as my health.

On Feb 19 I received another packet of paperwork to fill out for my SSDI claim. This was a Friday. I then received a call Monday morning from the SSDI case worker asking why I had not returned this paperwork. The paperwork has since been filled out and submitted and I am still waiting on a decision. Nine months after applying for disability I still do not have a decision.

To make matters worse, on Feb 11, I slipped on the ice from our massive snowstorm. This resulted in a compression fracture of two of my vertebrae. The Emergency Room doctor referred me to an Orthopedist who I saw the following day. He ordered an MRI to see if the bones were pushing into my spinal cord and to make sure no bone fragments had gone into the cord. He also prescribed a back brace that was supposed to immobilize my back so that it could heal properly. It was prescribed as a medically necessary item. It took me a week to find a prosthetics company that took Medicaid who was willing to fight for me to get this brace. I went in, was fitted for the brace and all of the paperwork was submitted to DMAS (Medicaid) on Feb 19. And we waited, and waited, and waited. I called Medicaid with the billing code for this brace to verify that is would be covered prior to going in on the 19th. I was told that yes, as long as it was medically necessary it would be approved.

On March the 8th almost a month after breaking the two bones in my back, the prosthetics company received a response from Medicaid that stated the brace would not be covered because I was not in in-patient intensive therapy. I received a letter in the mail two days later telling me the brace is not covered and I may appeal the decision in writing within 30 days. I do not know yet the irreparable damage caused to my spine by my bones not being able to properly heal. What I do know is that I also had to fight and be rescheduled 3 times for the MRIs that my neurologist ordered while the hospital waited on Medicaid to approve them, which also meant putting off my monthly infusion until we get those results.
Medicaid will not approve a $500 brace to help the two broken bones in my spine heal properly. If they do not heal correctly, I wonder if they will pay the $20,000 + for corrective surgery, or if that too will be denied. This is the government run healthcare system that is in place in this country and our representatives do not understand why so many Americans are opposed to a government takeover of their health care?

I am begging for your help in resolving these issues with these two agencies. Not only for myself but on behalf of the other 300,000 people in this country who live with this disease every day of their lives. There is no cure for MS. The disease modifying drugs used to help slow the progression are only available in injections or Intravenous infusions. The cheapest of these drugs costs over $2000 a month if you do not have insurance. The IV Tysabri that I am currently taking as a once a month infusion is over $6000. Medicaid did cover my last infusion, but I am uncertain if they will continue to do so. I have run out of places to turn for help and I am drowning in debt while waiting for a decision from SSDI. I am in pain and on a steady supply of pain killers with two broken bones in my spine and Medicaid refuses to cover a back brace. I don’t know who else to turn to at this point. Any input on how to get any of these issues would be greatly appreciated.

These are the effects of our government run systems. I am begging you to vote against this healthcare reform bill. Instead, spend time correcting the systems that are already in place and failing miserably. Your voters are dying while waiting on Medicaid and Medicare to approve prescriptions and necessary testing. The fact that our presidential approval ratings are now in the single digits should tell you that your constituents are unhappy with the decisions being made in your offices. The nation is divided on this health care reform bill, and no other issues are being addressed by our government at this time. One year has been spent on this one piece of legislation while our soldiers are off fighting a war and our unemployment rate is rising.

Thank You,

Self Cathing- worst day ever!

2010-02-28T17:23:00.000-08:00

I had to meet with Nurse Lady again. Her new nickname is Mistress Satan. Mistress Satan gives me a pamphlet with instructions on how to insert a catheter. She then opens a drawer on the table of doom and pulls out a little package with a catheter in it, and asks me to follow her out to the bathroom. We wash our hands and she then tells me to go on and pull my pants down and sit on the toilet like I am going to go. Really, Mistress Satan, not paper sheet of modesty this time?

Now I am sitting and she tells me to reach down there and spread em. Mistress Satan is now squatting next to me with her head a few inches away from all of the places she does not need to see. And all of the places I cannot see while sitting. She then directs me, left, right, no, back left, a little to your right, now up, oh too far…. This goes on for a good 10 minutes until I finally find where I am supposed to be with this silly tube. It doesn’t really want to go where it is supposed to go as my body does not like this new form of torture. We finally figure it out, and it is finally over.

This was not a simple process and in all honesty it has taken me weeks of practice to be able to use it without hurting myself in the process. Unfortunately, it is still a necessary evil in my life. And one that brings with it a massive amount of depression. I am 29 years old, I should not know how to do this much less rely on having to use it. It is depressing. A part of me was lost that day when I first met Mistress Satan, and I fear that part will never ever come back!

Some things I have learned: If you don’t get it on the third try, give up! The more you try and fail, the more irritated your body becomes. It then starts presenting you with lovely symptoms that closely resemble a UTI. I have also learned if you go in too far then your bladder will collapse around it mid stream and you will not only be stuck with whatever is left in there, you will also be dealing with severe cramping for hours after. I have learned not to call Mistress Satan at the first signs of a UTI or she will bring you in for more torture. I have learned that I have to psych myself up before attempting to use this device. I have learned that AZO pills work wonders for the irritation, but cause you to pee a super bright neon orange color, and this is somehow normal. I have also learned that when you are 29 years old and you are in a bathroom and you cannot get this stupid thing to go in to save your life, it is perfectly normal to burst into tears.

Urodynamics Testing

2010-01-05T16:57:00.000-08:00

That was horrible! Not painful, just wretched! For anyone curious to know what this entails, please allow me to fill you in. Not because I want to tell you about it, but because thanks to MS I have been stripped of all dignity. We discovered that MS really stands for modesty stealer.

So I go in, undress, put on one of those lovely hospital gowns that is 5 sizes too big, open in the back and covers NOTHING. I am then told to sit on this table/ chair combo thing. This thing is insane. It’s like an exam table that is sitting straight up with a U shaped seat on the bottom. Under this little seat is a bucket, and somewhere in the bucket is a sensor to track the speed of urine as it goes in. It’s like a radar gun… for your pee. I am told to pee in the bucket. The nurse leaves the room to give me some privacy, and says to go ahead and go.

I have always had a shy bladder. Prior to having my daughter I could not pee if you were standing on the other side of the bathroom door talking to me with the door shut and locked. I was never one of those girls to go the bathroom as a group because it is impossible to pee while trying to carry on a conversation with other people in the room. P.S. guys, this is why women go together so we can take care of business while talking about you. I am in this big open exam room trying for all I am worth to pee in this bucket while sitting on this table.

Five minutes goes by and the nurse comes back to see how I am doing. I tell her this is not working. My body is telling me I have to go, but there is a little voice inside of my head screaming that this is not a potty!! One of those things that was instilled in me as a child is that you are only supposed to go on a potty. This is why I don’t like camping. She leaves me alone again. For ten minutes this time. And I try, oh how I try. But again, nothing.

Nurse Lady comes back in, this time with a rolling cart and a tray full of tubes. She then proceeds to tell me she is going to drain my bladder (the dreaded catheter), and she will also be inserting another two catheters with electrodes on them that will measure my muscle movement down there. Number one goes straight into my bladder and YAY, I no longer have to go. Number two is put in my woo hoo. Number three, well that is where the number two usually comes out. I am beyond violated at this point.

Now the fun part starts. They pump Saline into the bladder to see how much it takes for me to tell them I need to go, then they add more to see how much it takes before I tell them I am about to pee myself and I simply cannot take anymore fluid. She then adds another ounce just for good measure! I hate this woman at this point.
She then tells me I need to go in the bucket. BUT, I am not to apply any pressure or squeeze my muscles. To just relax and let it out. She leaves the room again to give me some privacy. I don’t really get the need to privacy at this point I mean the woman could not violate me more if she tried. And of course, I cannot go. She leaves me in there for a good ten minutes before coming to check my progress. She reads the print out from the computer that is attached to all of my girly parts.

Now she tells me to apply pressure, use my muscles, do whatever I need to do to go this time. After another twenty minute internal battle with my body and my brain, I am finally able to go, but not all of the way. Nurse lady comes back, reads the print out, says to me “wow, you have great pelvic muscles”. Amazingly I had this same comment just a few days before from the doctor. And amazingly enough, this still does not make me feel any better about any of this! Oh, and BTW for anyone who has never had this testing, they use cold saline, and when you do finally get it flowing, it’s cold coming out! This is the weirdest feeling, as I have never in my life had cold pee coming out of my body.

Nurse Lady decides to once again drain me to see how much I am holding. We are finally done at this point. She removes all of the tubes, and sends me out into the hall to await my results. Results are: your bladder is just not working on it’s own and you have to rely heavily on your pelvic and abdominal muscles to get bladder function. WOW, really?!?!? I could have sworn I told you all of this before you made me get naked, stuck tubes in my sensitive places and made me pee in a bucket! Did we learn anything else from this study? Oh, yes, your bladder is not emptying when you do go…. Did I mention I hate Nurse Lady?

The follow up doc appointment was not so bad, he actually let me keep my clothes on this time. Much better than the first time we met when he had his hand in places it didn’t belong and was asking me to squeeze. Not so bad of course until he decided to tell me there is no medication for an underactive bladder such as mine, and that most likely the issue is caused by the lesions in my spinal cord, from the MS. And my only option at this point is to come back and meet with the evil Nurse Lady again and she will teach me how to do a catheter at home, by myself. No thanks doc!

Oh, but yes, this story gets even better. You see if you don’t do this catheter thing and drain your bladder you will develop bladder and urinary tract infections, and they will eat at your kidneys. And yes at that point you run the risk of kidney failure.

I had to weigh these options carefully, you see I figure I have two kidneys so if one goes I should still be okay for a while right? Of course I ultimately decided to not risk it and to come back and meet with Nurse Lady again, no matter how uncomfortable and disgusting it was.

urodynamics testing...

2009-12-28T03:52:00.000-08:00

OK so obviously the measuring cup I bought to record my peeing ability is wrong. According to the cup I am retaining well over 7 cups of fluid...which I don't think is humanly possible. I am getting ready to go in for the testing. I am so not looking forward to having a cath inserted and seeing how much fluid my bladder can hold before it leaks. This just doesn't sound like fun. And the fact it is to be done so early in the morning only makes it twice as bad.... More later after its all over.

Christmas Time Update

2009-12-23T07:26:00.001-08:00

Haven't updated in a while...let's see, where to begin? Christmas shopping sucks when you have MS! As I found myself stumbling around like a drunken monkey last night I realized I may have over done it just a little.

I have one more present for the kids to pick up on the way to moms and I will be done. Fortunately this one is at a friend's house and in the same neighborhood as my mom.

Then the kid and I are headed to spend the night at moms then up for Christmas with my sister and the kids tomorow morning then back here to cook and clean for christmas day so that the kids can destroy my house again. And I get to clean again before my mom and his parents come over...and some time between then I have to get my kid packed up and shipped out to go to her dads so she can do Christmas there. See, there is a downfall to having a broken family.

UGH! So for the dreaded MS -> Let's see...oh wait, I can't. Left eye is all wonky again, my legs are somewhere between numb and oversensative, and for some reason my butt is numb. That's a fun one. Still can't pee! Balance is all crazy and the fatigue is starting to set in again.

Swicthed to a new wholesaler and I am trying desperately to get the new inventory set up on the sites which is time consuming and I just don't have the time, plus I have 2 kids here until after New Years, so getting any work done has to be after bed time. I am so looking forward to the time when they go back to school.

Well, i have to get off here and go get some cleaning done. Hope everyone has a wonderful holiday!

Disability People wanted a list of my symptoms.... Figured I would share.

2009-11-13T06:42:00.000-08:00

August 2008- Small patch of skin felt numb on Right calf inner calf area.

Sept 2008- Slip and fall resulted in 3 broken bones in hand, pulled tendon in forearm (right arm) and entire right leg went numb.
End of Sept 2008- Made appt with Orthopedic Specialist- Several X-Rays/ Reflex tests, determined it was not a pinched nerve, and had nothing to do with my spine as it was of normal size and alignment. Referred me to a neurologist, for possible nerve damage.

October 2008- First appt with neurologist- determined there was a problem in my spinal cord and sent me right away for an MRI. Oct 31- Results from MRI confirm neurologist suspicions of Multiple Sclerosis. 4 lesions found in Thoracic spine. I was then sent in for another MRI of my brain and blood testing and LP to test for any other possible causes for lesions. There was no MRI done on the Cervical spine at this time.

November 2008- Results of all tests are back, 7 lesions found on brain along with the 4 in the thoracic spine. LP tested positive, all blood work indicates no other possible causes. At this point, the left leg is going numb, along with numbness in back, mostly right side form shoulder blades down. Neurologist started a 5 day treatment with IVSM at a gram a day. I became very ill, and very swollen. Weight gain, depression, lethargic, and 6 blown veins in 5 days time. Neurologist administered water pills and a five day supply of Ambien to try to counteract the effects of IVSM. Two days after stopping IVSM, woke up soaking wet, and covered in sweat, shivering, and aching. This lasted for 2 days and then went away.I was on the Medrol dose pack taper after the IVSM. This was followed with extreme pain in both ankles, felt like the joint was locking up. After a few days this too went away. Three days after LP, began having tension headaches, which were accompanied by a burning feeling in both legs. Neurologist prescribed Duradrin to treat headaches. Also prescribed Zoloft for depression and Amitriptyline to aid in sleeping. Neurologist also administered Skelaxin for pain.

December 2008- Began having balance issues when walking. I could no longer walk in a straight line. Also began seeing yellow/white spots in my left eye. Blurred vision in the left eye. Evoked Potentials test revealed “mild case of optic neuritis”. Neurologist administered 7 days of Medrol dose pack. Depression continued, and I was told to up the dosage on the Zoloft. Started daily injections of Copaxone.

Jan 2009- Woke up with severe pain in the spine between the shoulder blades. Called neurologist was instructed to go to the ER. ER docs contacted the neurologist who recommended Percocet and Another round of Medrol dose pack. Followed up the following day with neurologist, was told symptoms were stress induced, and I was sent home. Followed up again two weeks later, symptoms continued to get worse, including electrical feeling down my spine when I would bend my head. We tried another 7 day taper of Medrol dose pack. Vision issues and balance issues continued to progress. At this point I was numb from the shoulder blades down to my toes on both sides. I was once again told it was stress induced and I was told to follow up in 4 months. At this point I decided it was time to find a new neurologist.

Feb 2009- Made an appointment with a new neurologist. For mid march. At this point I was no longer able to drive a car. I could not feel the pedals under my feet and I could not see clearly out of my left eye. Balance issues continued to progress. Called old neuro about worsening of symptoms and he called in another 7 day taper Medrol Dose pack.

Mar 2009- Went to Kentucky to visit family. By the time we arrived from the 12 hour car trip, my pinky and ring finger on right hand had gone completely numb as well as the skin on my forearm down to my elbow. Saw new neurologist who immediately called in another 5 day round of IVSM, administered at home this time. She also sent me in for another MRI which showed a more lesions and growth of previous lesions in the Cervical and Thoracic Spine, as well as the brain. See attached. Called when we returned home, the neurologist on call called in a prescription for Baclofen. To help with the spasms in my back whenever I would lay down.
End of March 2009- I became ill after my fiancé contracted a case of walking pneumonia/ bronchitis. At that point, I decided to stop taking the Copaxone and all other meds while I was on the antibiotics to treat the pneumonia/ bronchitis. Within 3 days, I noticed a dramatic improvement in my balance. By 7 days of not taking Copaxone, I was able to walk in a straight line, I could feel my legs and back, and the pain had subsided. It was at this point I followed up with my neurologist, who recommended I begin Rebif injections. I decided to try to take a more homeopathic approach. Ten days after stopping Copaxone, my vision had returned to normal and the neuro-opthomologist could find no signs of optic neuritis.

April 2009- I decided not to start the Rebif, and to try treating the disease with diet and vitamins. I gave up beef and pork, began taking a daily regiment of vitamins. Vitamins included: Vitamin E, C, B6, B12, D, Calcium, Selenium, Aloe Powder, Omega 3-6-9. Only one of my symptoms remained. I still felt electrical charges when I would bend my head. This began to get worse and I began to have what felt like crawling skin/ pins and needles down my back whenever I would dry off after a shower. None of my other symptoms returned. Another MRI on Brain and optic nerves. Brain shows progressing. See attached.

June 2009- We moved. Numbness, and back spasms returned. I assumed it was from the physical stress of moving, waiting two weeks, when it did not subside, I called the neuro. I was told the symptoms were most likely a result of physically over working, and to give it some time. Numbness continued to get worse, as well as the pins/needles feeling in both of my legs. Spasms started in my back again whenever I would try to lay down and pain in my spine between shoulder blades and in neck returned.

July 2009- Sinus infection brought on the return of Optic Neuritis. Antibiotics administered. Followed up with neurologist. Another 5 day round of IVSM was administered. Started Neurontin for the pins/needles feeling in my legs which is increasing with heat.

August 2009- Finished IVSM and another MRI of Cervical and Thoracic Spine shows it is still progressing and new lesions are forming. Started Avonex weekly injections. Also started Ambien to aid in sleeping and Tramadol for pain. Began experiencing sever depression issues, pain continued in my spine. At this point the neurologist called in a prescription for Ketorolac. After stopping the IVSM, had what felt like a kidney infection followed by a yeast infection that lasted for over a week. Was prescribed Citalopram for the depression. Began having night sweats and not being able to sleep at night.

Sept 10-12 2009- Awakened with severe pain in right lower rib, pain spread to include left lower rib. By the end of the day the pain also included my back, it felt like there was a band around my body squeezing. I informed the neurologist the pain subsided after 2 days.

Sept 24, 2009- Had Tubal Ligation surgery. There was excruciating pain afterwards, mostly in my spine and abdomen. The pain increased as time went on, and I began running a low grade fever . Left eye began to have fuzzy vision, numbness in my right hand (pinky and ring finger down to my elbow). This also caused both of my legs to go completely numb. The depression issues continued along with MS related fatigue. Began to have injection site reactions to Avonex, including swelling, and redness. Skin was hot to touch. Was advised to stay on the Avonex at this point. Night sweats continued, to the point I was soaking through my pajamas and my sheets.

Sept 30, 2009- Diagnosed and treated for a sinus infection and inner ear infection.

October 2009- Injection site reactions with Avonex continued. Also began breaking out in hives on both legs and chest. Regained some feeling in my legs, pressure can be felt but the skin is still numb to the touch. My right leg has bouts of hypersensitivity. The skin is either numb or feels like there is electricity buzzing through it followed by a crawling bug feeling under the skin. Began having sever cramping and severe periods from the Tubal Ligation. I was put on birth control pills to counteract this. Follow up with neurologist, it was decided that we would be stopping Avonex and switching to Tysabri. Due to a worsening of pain and cognitive issues, we did another set of MRIs where they found more lesions in my brain and determined the lower back pain was from Degenerative Disk Disease and there was mild bulging in every disc of my lumbar region. I decided to stop taking Avonex on 10/24/2009. The injection reactions were getting worse with the hives and the night sweats, and the fatigue and depression were also increasing. Was diagnosed and treated again in October with another sinus and inner ear infection.

November 2009- Gained 13 pounds in two weeks time. Swelling, and cramping in lower abdomen, strange smelling urine, constipation, lower back pain, and mild grade fever resulted in another trip to the doctor. Testing found glucose and protein in urine. Because it tested negative for white blood cells it was determined this was not a kidney infection. Blood work was tested, and I was sent in for ultra sounds. Nothing found. Was prescribed Avelox and Vicoden and told to follow up with my neurologist.

This has been my life for the last year....

Does double the protection mean double the sex?

2009-10-17T08:52:00.000-07:00

You have to love my life. It is never boring anymore. One would think my not working and being home and rarely leaving my house would get boring. But no, my body finds ways to entertain me.

I was told that if I attempted to carry another baby to term it would most likely paralyze me. From all of the very large and scary lesions on my spine, the doctor is baffled that I am walking as it is. When the time comes to switch out my IUD I am ready! Except....my insurance will not pay for contraceptives. It will, however pay for a tubal ligation. After much deliberation, a few tears shed, and an acceptance that I will never have another child, I agree to have this surgery.

I go in, get the surgery. Which I am told was a success. I wake up from surgery in excruciating pain with a nurse shoving ginger ale and graham crackers at me because my blood sugar is low. Well duh I wasn’t allowed to have anything to eat or drink before the surgery. They refuse to take me to the recovery room until I eat these crackers and drink the ginger ale. I ate the ginger ale felt great on my dried up throat (they had a tube in there) and they wheel me to recovery. A few minutes later the projectile vomiting starts. Man I love my nurse. LOL

After about an hour of excruciating pain and sitting in a bed smelling puke I tell the nurse I am ready to go home. I can lay in pain at my house just as well as in the hospital. So they send me home. Well, I made it to my moms. No way I was going to make it back to my house some 65 miles away. The pain was torture and I could not get comfortable. The Percocet did help that a little.

Spend the day being pampered by my mom. Sent the man home to take care of the animals. Made it back to my house the next evening. It was good to be home. Still in pain, and that’s when the uterus decided to try to run away. A whole new kind of pain.

Then I woke up and my legs were completely numb again. YAY I have MS! First thing you do when new things arise is take your temp. I had a slight fever and decided to call my doc. Of course, he needs to see me before he can call me in an antibiotic. And he can only see me around the time my DD is getting out of school. I have to leave the man here, get in my car and drive the 60 miles to the doctor’s office. Mind you at this point I have a fever, my legs are numb, I cannot feel the pedals and I have stitches in my belly that are showing signs of infection. Oh yeah, and my uterus is still spasming which feels like contractions and my left eye is acting up…and I am driving!

Get to the docs office who tells me to treat the stitches topically and that he does not feel comfortable giving me an antibiotic because I am on immune suppression therapy for the MS. He then offers me another prescription for Percocet and tells me to have a nice day. He gets cussed out at this point and I am ready to stab the man in his testicles with a scalpel. I then get to drive back home in the same condition. I hate this man.

Two days later my daughter comes home from school in a particularly foul mood and I discover she is running a fever. This is the same day my head got all stopped up. I take her to the doc and find out she has a sinus infection….which means another trip to the doc for me. Turns out I have a sinus infection and an inner ear infection. Two weeks later I am still fighting the sinus thing.
Then I get my monthly friend who I haven’t seen in 3 years…which is why I loved the iud so much. This friend comes with uterus spasms again and massive amounts of yuck. Call back to my OB/Gyn office. Talk to my favorite midwife. We go over a checklist of symptoms. Sounds like I have Post Tubal Ligation Syndrome. But we can’t be 100% sure because most of the symptoms are also MS symptoms which I was having before the surgery. And how do we treat this? Birth Control Pills! The same pills my insurance would not pay for when I wanted to get my IUD replaced. They will now pay for them because they are not being used for contraception, but instead for hormone replacement. You have got to be shitting me right?

I am now taking not one but two birth control pills a day to counteract the effects of getting my tubes tied. The MS symptoms are getting worse by the day and when I go in to see my Neuro on Monday I get to request another MRI because I am pretty sure I have grown two new lesions on my spine. I shall name them Bubba and Earl. This is my life. Welcome to it.

OH OH and as if this story isn’t bad enough…. My daughter comes bursting into the bathroom the other day at the MOST inopportune moment (while I am trying to clean up the yuckiness) and proceeds to freak out that mommy is bleeding and tells me I need stitches! I was then forced to have a very serious talk about menstruation with my 5 yr old. That was fun. Almost as much fun as getting a call form the school nurse the next day. My darling daughter went in for her hearing test and she asks the nurse “I understand when you get old you have blood in your belly for the baby and if it doesn’t come out it makes you sick, but WHY DOES IT COME OUT OF YOUR COOCHIE??? Shouldn’t it come out of your belly button?? Because my mom’s coochie is bleeding!” So we had to have another talk last night. This is fun.

And does double the protection mean I get to have double the sex? Hell no. I can't stop the bleeding from getting my tubes tied. Moral of the story here: Don't ever think that it can't get worse because it will find a way!

It's just one of those days!

2009-10-13T09:58:00.000-07:00

Depression, frustration, and anger. These are some of the things the doctors warn you about when you have MS. They warn you about a lot of things in hopes of preparing you for what life has in store. But there really is no way to prepare for any of it, and this is the case with life in general not just with MS or any other disease.

Fatigue, optic neuritis, balance issues, pain, insomnia, numbness, depression, hypersensitivity, bowel and bladder dysfunctions, sexual dysfunctions… These are all common symptoms with Multiple Sclerosis. You can read about these symptoms, you can research treatments, but you cannot prepare for any of it, until you experience it. And most of the time the doctors don’t tell you what to expect because there is no sense in getting you worried over something that may or may not happen. And I have not read anything in a book, or online that has prepared me for any of this.

One of my biggest challenges with this disease is the frustration I feel when I am no longer able to do the things I enjoy. In the beginning of summer, we were hitting the beach almost every day. We were at the park, we went hiking, we played and we laughed and although I had this disease life was good. By July I couldn’t step outside without the heat causing my legs to crawl, and causing my eyes to act up. I couldn’t pick my daughter up from the bus stop when school first started without taking my air conditioned car. We live 3 houses away. I knew if I attempted to walk down and stand there for the 10 minutes or so that we wait for the bus I would not be able to walk back home. And although you learn to adapt to these changes in your body and in your life you cannot help feeling frustrated.

I have a very aggressive form of this disease, and the only way to treat an aggressive form is with aggressive therapies. So I pump these toxins into my body each week. I take pills for the MS symptoms, I take pills to counteract the symptoms of the medications. I inject myself every week with a drug that tries to shut down my immune system. I get sick, and I stay sick because my body cannot fight these attacks. And your entire life becomes one big science experiment. This drug makes it worse, this drug is effective for most people but not you. Let’s try this one. Let’s try that one. It’s all one big guessing game. What works for some doesn’t work for others.

There is such a thing as “MS Fatigue”. We have our own class of fatigue, and until you have experienced it, you have no idea. I can tell you there are weeks at a time where I am completely useless. It takes every ounce of energy I have to get dinner cooked. I can’t get off the sofa, and when I do it’s because I am going to get into my bed. But even sleep is terrifying, and painful. Am I going to be able to see when I wake up? Am I going to be able to walk? Is the crawling bugs feeling on my leg going to let up so I can fall asleep? I look around my house at the laundry piling up and the floor needing to be cleaned and I cannot find the energy to get off of the sofa and take care of these things. Mommy doesn’t want to play today sweetie she is so tired. And you lay here and watch life as it passes you by and this is the fatigue they talk about.

People can see that you are having a hard time walking. And even if they can see the physical impact and they can understand the cause of these symptoms. But no one can see the emotional impact that this disease has on you. No one can feel what is going on in your mind when you realize you cannot walk across the room. No one feels your heart sink when you look at your shoe collection and you remember the days when you could actually wear them. No one can see the disappointment in yourself when your body refuses to respond to the drugs. Or the absolute feeling of hopelessness you feel when you look into your child’s eyes and you don’t know that you are going to be here to watch her grow up. You can no longer run around the yard with her, and you don’t know if you will even be able to walk with her tomorrow.

You see people who take life for granted and it makes you angry. You used to be one of those people. You worked too much, you didn’t take time for yourself, or time for your family. And now you can’t get that time back. And it makes you angry.

Every day isn’t a bad day. And you do learn to appreciate life a lot more when you have something threatening to take it away. Every day is a battle in the much bigger war called life. And every day that I wake up I awaken with the knowledge that I am alive and this disease didn’t win, and this war is not over.

But, some days, like today you just don’t want to fight anymore. Some days you just want one day where you are not reminded that this thing is here and it’s kicking your ass and there is absolutely nothing you can do to stop it. These are the days when you have to fight harder. These are days when you have to use that anger and that frustration to push you through to tomorrow. And you cannot worry about what tomorrow has in store because even if you do there is no way to be prepared. Life happens, and there is nothing you can do to stop it.

Dreaming of dear Lady Sleep

2009-08-31T03:23:00.000-07:00

Sleep is a blessed curse that taunts me in the night. She is an ellusive creature who shudders at the thought of our togetherness. The traps I set are futile as she finds a way to escape me every night and I am left a shadow of my former self. I miss her. Like the love I feel, or the air I breathe, I cannot seem to function without her. Why does she torment me so? Does she not see how I long for her company? Can she not feel the pain that is caused by our broken bond? Oh dear lady sleep, please come back to me. As the sun sets and the moon shines from above I long for you. If you come back to me, I promise that I shall love, honor, and cherish every moment we spend together.

OK, so I have decided sleep is obviously a woman. And somehow I have managed to piss her off. They say hell hath no fury like a woman scorned, so obvioulsy she is one pissed off little lady!

Sometimes you are damned if you do and damned if you don't. Tramadol... supposedly a great pain killer as it is supposed to block the pain receptors in your brain. WRONG! For me, it gives me a headache and makes my neck hurt. BUT... if I take an Ambien afterwards, it makes everything stop hurting and I turn into a zombie before I fall into the bed and sleep like the dead. The only problems of course being that it's addictive and when I wake up I feel like there are weights attached to my arms and legs and my brain hurts. It feels like my skull is shrinking and there is just not enough room in there for my big giant brain.

Doc decides to add Ketoralac, an NSAID. (Non-Steroird Anit-Inflammatory Drug) which by the way has about the same effect as taking two tylenol.

This leaves me with 3 options:
* Drug up before sleep and feel like crap all day
* Just take the ambien and get a few hours of sleep but no enough to function
* Take nothing and skip sleep all together.

Yesterday I decided the pain was not unbearable, it was still there but not that bad. So I decided to take and Ambien and get some shut eye. Ambien and I have a Love Hate relationship. On the one hand, it shuts my brain off and puts me right to sleep. On the other hand, it only stays in your body for a few hours. It does not make me groggy in the morning and I don't sleep through my alarm going off. These are very good things. Except... I no longer sleep through my fiance's alarm going off either. And once I awake, that is it. Sleep is over, time to get out of bed before the pain in your back renders you immobile. I love that it puts me to sleep, but I hate that it does not allow me more than a four hour window of sleep.

A lack of sleep does many things to a person. I forget words, I have a hard time forming sentences, and most importantly, I feel an overwhelming urge to just kick the living shit out of anything that moves. Especially those people who feel the need to wake you from a much needed sleep. This morning I was woken up by a hand shaking me and asking me to do something (I assume "roll over" as there was a shaking hand on my stomach and some grumbling between snores coming from the other side of the bed). Three minutes later the alarm goes off. This is about the time my bladder reminds me it's time to get up. I get up, I make coffee and 45 minutes later the grumbling snoring shakey hand man come stumbling out of the bedroom. YAY! It's time for him to go to work. I can finally get my bed back.

I go crawl back into my bed, pull the covers up around me and.... And I lay there, then I turn this way and that way and no matter what I do I cannot get comfortable. Sleep left my bedroom at 2:45 this morning and she has no intentions of returning. 3:30 this morning I decided to have a cup of that coffee I made. I have been up for over 5 hours and it is not even 8:00 AM. This is ridiculous. On the plus side, I stopped crying. I think I am too tired to cry.

It's my BLOGY and I'll bitch if I want to!

2009-08-26T11:30:00.000-07:00

And the MRI shows once again....IT'S PROGRESSING!! I now have 12 lesions on my spinal cord ranging in size from 9mm to 74.7 mm. The doctor is worried because it is progressing so fast and I am terrified of life right now. I really don't know what is worse, the idea that this disease is trying to kill me or the idea that it may not succeed and this is the quality of life I have to look forward to.

Every time I am alone, I find myself having crying fits, which is highly out of character for me. I am not a crying kind of girl. But I can't seem to shake this sinking feeling. Each day this disease seems to get worse and worse. I never even thought MS was even possible until I was diagnosed last October. Then I was told it is relapsing remitting and it will go away and come back. Then I was told it's looking like secondary progressive and now I am being told it is progressing faster than should be possible. Neuro started me on Avonex, but already believes it is not going to work and has already planned to switch me to Tysabri in 6 months.

And I am still not working, and I am at home feeling completely useless. I have no energy to do anything. I am now on Tramadol and Neurontin and Avonex and Ambien. I don't know if it is just the frustration of this stupid disease or the increasing symptoms or self pity or maybe even a side effect of the meds but I can't stop crying. I don't cry when my daughter is here and I don't cry in front of my fiance or my friends and family. And I am alone a lot lately now that my daughter is in school. Which leaves me time to think, and then I can't help thinking how the hell my life has turned into this and I lose it all over again.

What sucks is "You look so good!" yet I feel like I am trapped inside of a torture chamber and I have no way to escape. You can't tell by looking at me that my legs are on fire you can't tell that it feels like my skin is trying to crawl away. You can't tell that I cannot see clearly out of my eye or that it feels like I have three knives sticking straight into my spine. You can't see the torture that my mind goes through when I forget a word, or I forget where I am going or why I walked into this room. You can't seem to comprehend my new phobia of stairs, or daylight, or driving long distances. The dread that washes over me when it's time for bed because I don't know how bad it is going to hurt to try to lay down and I have no idea what new torture my body will invent the next day. You don't get to feel what it's like to hook an IV into your arm and pump yourself full of toxins that make you pray for the mercy of death as you watch your body respond and you gain 9 pounds in 5 days. You don't get to experience the panic that takes over when you get so much as a sinus infection because you know your eyes are going to take the hit. But I LOOK great...when I'm not bursting into tears that is.

The depression is a real bitch. That is one of those side effects they warn you about but you just don't know quite how to prepare for it. And yes, I do realize how much worse it could be. And I am grateful that I can still use my legs, and I can still swallow and I can still get from point A to point B on my own. I do know that it could be so much worse, but that doesn't make it suck any less. That doesn't make the hopelessness fade any faster or the fear subside.

Who knows? Maybe I am just going insane! That is what happens when you obsess over things. I don't think I have spoken to one person with this disease who doesn't obsess over it. It's not something I do on purpose but when you have something attacking your body and you feel the effects of it 24 hours a day you tend to think about it 24 hours a day.

I just felt like venting!

2009-08-13T15:14:00.000-07:00

So it's been a while since I have written. Where to begin..... Well, we moved again. And I cannot get internet access at the new house Thank you verizon!!

Moving caused all of my old symptoms to show up along with a few new symptoms and the fact that ALL of the old problems never went away(all but a few minor ones went away but those few continued to get worse).... the doctor now thinks I am secondary progressive. Wants me on Avonex right away to try to slow the disability and I have another MRI scheduled for tomorrow. Because I have thyroid issues and heart issues already there is a slight chance the Avonex could be fatal. But if this disease continues to progress at the rate that is I am looking at being in a wheelchair in the next year. These are my options. Ignore it and lose more and more functions or try to treat it and hope that it doesn't kill me. AWESOME! So I am a little stressed out which is not helping anything and I am finding myself having crying spells that last from a few minutes to a few hours.

Oh did I mention Avonex causes depression....and I haven't even started the meds yet. In the mean time I am on Neurontin to help stop my skin from crawling right off of my body....and it's not working.

And neither am I. I am still not working. I cannot stare at a computer for more than an hour without triggering the optic neuritis, I cannot stand for more than an hour without my back spasming and my feet and legs feeling like they are on fire and I cannot lift anything over 10 pounds. I have no idea what it is that I am supposed to be doing for a living as every job I have ever had requires at least one of the above mentioned. YET... I am not disabled enough to be disabled in the state of Virginia. But don't stress it makes MS worse.

And to top all of this off my daughter starts school (Kindergarten)in 2 weeks and I have no babysitter out here in the sticks as I don't know anyone and I can't get her on an "as needed" basis with daycare, so her first day of school i get to pick her up early so she can go with me to my neurologist appointment because to reschedule it requires waiting another 3 weeks to get in. I am frustrated and overwhelmed.

On the plus side I finally heard back from Johns Hopkins who sent me all of the required paperwork to schedule an appointment. I will fill that out and see what happens. This year has been a rollercoaster ride and it doesn't look like it is ever going end and I am tired of the hills and sick to my stomach and I really really just want to get off!

Weekly Check In time!

2009-05-20T11:56:00.000-07:00

Let's see, the good news or the bad news first? The bad news is kind of funny so we will start there and end on a happy note.....

Yesterday I managed to pull a bonehead MS move... Falling UP the stairs. Now let's face it, I have never been one to do anything half-assed. Not only did I manage to fall up the stairs, I managed to land on my big toe causing an obviously broken toe and a suspected broken metetarsal too. Which hurts like the devil, but does make a funny story. Especially considering I am just getting over the sprained ankle on the other foot from last weekend.

The diet is going great. I have lost another 3.4 pounds since last week for those who are keeping track that makes 8.4 pounds in the last 3 weeks! I have been craving avocados for the last few days. I have never craved avocados even when I was pregnant, but hey I got 8lbs saying I can eat a few if I want. So that is my update.

No major MS symptoms besides the feeling liek something is touching my back when it is not and the lightning bolts. It doesn't hurt, I can see, i can walk, and I am able to feel my legs so i am still not calling the neuro.

I do NOT regret not trying the Rebif because in general I feel great. And I highly recommend this diet to anyone who wants to try it. Not saying it's for everyone, just saying it seems to be working wonders with me.

Exciting new changes and another 2 lbs down.

2009-05-14T07:07:00.000-07:00

Welcome to the end of week 2. I lost another 2 lbs. I have done great at sticking to the new diet. Except for the dark chocolate chip brownies I made last night. But in all fairness I started working out again this week and DD and I went on a 2 mile hike yesterday and another 2 back and my guilt made me do another hour of yoga last night before bed after I finished all of my ebay listings. Yes, it was 1 AM but I have found I sleep better after an hour of stretching.

Some funny things I have discovered.... Yoga isn't as easy as it used to be and it is going to take a lot of time and effort to get my full balance back. It's also a lot harder to do now that I have a gut and I am not as bendy as I used to be. Yoga used to be my "thing" then I had a kid and a full time job and a hour commute each way and dinner to cook and baths to give and .... you know how it goes.

So in my discovery that yoga isn't as easy as it used to be I found I would benefit greatly from a balance ball. And ode to the wonders of Super Target... The ball I was looking at was $27.99 but then I found the Biggest Loser set with the ball and resistance bands on clearance for $9.98 Can't beat that!

Now let's talk realistic goals. Realistically I would like to tone up, improve my balance and lose no less than 30 lbs. Realistically I will not be able to do that in 2 weeks time it is something I have to stick with. Realistically I would like to be able to make it through my old yoga routine without falling over or getting the shakes like I am now.

The MS updates: I still have the lightning bolts when I bend my head. And a new thing is when i get out of the shower and dry off and hang my towel up it feels like the towel is still rubbing my lower back. This lasts for about 5 minutes. It doesn't hurt it is just annoying and no I am not consulting with my neuro about it.

Overall, I feel better than I have in a year. I am starting to feel like me again and it is so nice to be able to do things again! My daughter and I spend no less than an hour each day doing something fun like going to the park or hiking through the woods or hitting the beach. It is going to suck when school starts and I have to go back to work. But the business although it is doing pretty good still isn't enough to justify not working. I do plan on keeping the business after I go back to work and only plan on working part time. So for now life is good.

I realize this could change at any moment so I am going to live it up as long as I can.

Update on the diet/ herbs/ vitamins

2009-05-06T09:29:00.000-07:00

Tomorrow marks one week since I started my new diet and became a fish-etarian. I have cut out caffeine except for the ONE cup of coffee I am allowing myself to have in the morning. This was a HUGE step for me. Before I would drink no less than 4 cups of coffee and probably 4-6 glasses of super sweet Iced Tea. And any trip to the gas station warranted a Pepsi.

I force myself to eat breakfast now. I don't eat eggs, haven't since I was a kid and that is not changing now. Breakfast is pretty easy, a bagel and cream cheese or one of my many varieties of fruit smoothies with yogurt, and my cup of coffee. Followed of course by my 8 oz of aloe powder/ water mix which I normally use to wash down the first of my three part vitamin ritual. (Omegs 3-6-9, B12, Selenium)

Lunch is raw veggies, normally a salad which I use a variety of things in to create different kind and flavors. Yesterday was Spinach with mushroom, tomato and onion. Today probably citrus asparagus mix with apples. Followed by part two of the vitamins (Omega 3-6-9, Vit C, Zinc, Calcium).

Dinner is the only time I eat meat and by meat I mean fish, maybe chicken. If I eat meat at all. Last night I made the BEST manacotti with spinach, mushroom, onions, zucinni, cheese and topped with creamy pesto basil sauce. I also have some kind of salad with dinner as I am increasing my veggie intake. Again with the vitamins (Omega 3-6-9).

I also keep an herbal tea concoction in the fridge which I drink throughout the day. Green tea, Chamomile,Elder Flower, Yarrow Flower, Peppermint, Rosehip, Cinnamon, Ginger, Safflower, Licorice, mixed with Honey. Which has replaced my Iced Tea. yes it's a lot of stuff, but really it's only 4 different kinds of teat that I combine when I make it.

I have also increased my water intake, forcing myself to drink those 8 glasses a day. And I snack on fruits with cheese or yogurt when I want something sweet.

The results:
The lightning bolts when bending my head are still here but barely noticeable. I have actually increased my food intake I am eating a lot more than I used to... but I lost 3 pounds in the last week. None of the other MS symptoms are back. I feel more energetic, which could just be the psychological effect of putting good stuff in my body. And the one surprising thing... my face is clearing up! I have been having breakouts since my first round of IVSM. I feel amazing.

The only downside is that I am still cooking normal foods for my daughter and fiance. He doesn't like fish, she doesn't like anything with spices so she won't eat my fish.

Natural Healing? No I will not give up Gluten or Dairy!

2009-05-01T07:09:00.000-07:00

What happens when you have some random disease that keeps kicking your butt and your best friend is a nutritionist? Well, eventually you turn to them for help. Now I have followed the research on the gluten/dairy free diets. In theory this is a great idea. But in the real world not so much. I mean is life worth living without pasta and cheese?? Not in my house it is not. When I get stressed out, I make bread. Sometimes I make cheese filled bread. And no, I am unwilling to give these things up.

I am willing to make a few changes. I was even convinced to start drinking aloe juice. I have replaced my giant bag of medications with a giant bag of vitamins and my tea drawer is now stocked full of teas and herbs as the way it used to be before I was diagnosed with the MonSter.

I have decided to go back to a mostly vegetarian diet. I didn't eat meat for 3 years. I was far from vegan, like I said I like my cheese too much. Note that I said mostly vegetarian diet. I don't see myself going back to strictly veggies and fruits. But with summertime approaching and the abundant sources of fresh fruits and veggies I see no reason not to center my diet in this department.

I am doing this for two reasons. I want to lose weight and I want to feel better. When I gave up meat before it was because my stepfather had cows and I became attached to these cows, I fed them and pet them and named them. One day my favorite one was sent to be slaughtered and that is when I gave up meat. Obviously I got over this and went back to thick juicy steaks. I have also gained a lot of weight since then and with the added weight and now the MS crap I just don't feel healthy. It is time to make a change and since I am refusing the Rebif for now I need to find a better alternative.

I did discover something last night that I thought I would share. You know what helps build myelin? Omega fatty acids. Yes, these too have been incorporated into the diet.

And my little girl turned 5 today! She will be starting kindergarten this year. Where does the time go?

And I just finished #7!!

2009-04-27T09:36:00.000-07:00

Well, it has been an interesting couple of weeks. Seems they messed up MRI #6 so I got to go back in this morning for a retake... yeah that makes #7. Wasn't so bad though they got me in and out pretty quick.

Yesterday was my Darling Daughter's birthday party. We all had a great time, my house is trashed I will be spending all day cleaning up but it was worth it. The whole family came out, even the adopted/extended family. My ankles started protesting last night since I was on my feet all day.

So here is the deal.... my vision has returned to normal, I have no numb spots, no more lightening bolts down my spine, no more back spasms, I am actually sleeping at night time, and I have not been on ANY meds in over two weeks. I feel like I have my body back. Other people are noticing too. There is color to my face again I can walk in the middle of my rooms where before I was always within reaching distance of a wall. My daughter and I are enjoying the warm weather and playing outside and walking and I can see/feel to drive. I no longer feel like a prisoner in my own house.

I spoke to the pharmacist about the Rebif. He tells me that only 3% of people who take it develop thyroid disorders. What about the people who have already been diagnosed with thyroid problems?? How does it effect you then? For that I am told to consult my neurologist before starting the drug. The more I think about it the less I like the idea of being on this drug. So I have made the decision not to take it, which is something the neuro and I will have to discuss when I follow up with her next week.

One other note... The latest MRI showed the giant lesion in my brain is active again. Not that it really makes any difference seeing as there is no drug to effectively treat it or stop it from growing.

For now I have decided the doctors know plenty about this disease but it is true that it effects each person differently so when it comes to my individual case they are clueless. Symptoms were unbearable before I started the Copaxone... the new symptoms and increased intensity of all symptoms I got from the Copaxone and the steroids was enough to make me want to give up. Had I known how much worse it would get I would have chosen to live with the symptoms I had to begin with. You see the symptoms were unbearable when i started the Copaxone because I had no idea they could get worse.

Hindsight is 20/20 and I can say the "unbearable" symptoms that started all of this was nothing compared to the person I became over the 4 months I was pumping my body full of useless medications that did nothing but make it worse.

I also know that this is not a disease that is just going to go away and to think I will never be on meds again is ridiculous to say the least. I know that it is going to come back I know that it could be worse than ever before. But I also know that for now, I need to do what I feel is best and that does not involve injecting myself with a drug that will make me feel sick.

And another MRI!!

2009-04-22T19:22:00.000-07:00

Man I am starting to fear walking into my kitchen because I am scared the utensils will start flying at me! This is MRI #6 since October. This time it was to look at my optic nerves and my brain. Doctor is concerned now about the ON which is of course going away now that I have stopped the Copaxone. I feel like me again!

The neuro wants me to start Rebif.... I am having a really hard time with this decision. I am feeling so much better now that I have stopped all of the meds and now she wants me to start another one which has had nothing but poor results to go along with the negative side effects. And the side effects are astounding! I really don't think I want to put my body through all that for something that has a 35% success rate. If they printed that it has a 65% failure rate nobody in their right mind would try it.

So I am looking into more holistic approaches to this disease. You see before I had MS I was able to treat any illness or insomnia or ache with a simple tea therapy. The only time I ever went to the doctor was when I had strep throat. It's the only thing I couldn't cure on my own. Even the majority of my pregnancy was treated herbally.

I don't know. I ramble. But there has to be a better option.

Wow, you look great! Of course I do I stopped taking Copaxone!

2009-04-14T04:12:00.000-07:00

What bad could come from an MRI you ask me? Normally I would tell you nothing. It's the least painful procedure I have ever had at a hospital. Yeah, I get a little tensed up after more than an hour in the machine, but it's really not that bad.

My fiance on the other hand, tells a different story. He went in to have an MRI of his leg done. Should have been a simple thing. After waiting for hours for the Army doctor to get him in the machine, he was finally surfing the tube. Mind you, he has a steel rod in this leg from a previous injury. He comes home in pain and says his throat hurts.

So begins the case of walking pneumonia. His MRI was on a Saturday evening and by Sunday afternoon we were in the car on the way to the emergency room. Two EKGs, a chest X-Ray, Bloodwork, mouth swabs, nasal swabs.... We were there for 6 hours! He didn't care they had given him morphine for the pain, he was out like a light. I was finally able to take him home with a diagnosis of bronchitis or walking pneumonia and a z-pack.

Of course by Monday night I was getting the yucks and by Tuesday morning I was a mess. I ended up calling my mom to come take me to the doctor and take my DD to her dad's house. Hey wouldn't you know? I have walking pneumonia says the doctor. Awesome! I also had a fever of 103 and wanted to kill any living being that came within a 200 yard radius of me.

Fortunately the antibiotics seems to be working, even thought I am still not "cured" of the crud. During my fever induced psychosis I managed to skip a few doses of my Copaxone. I was about to inject myself one day and decided that my body had enough stuff going on and it didn't need anything else to fight it off. I made the decision to stop the Copaxone until after I finished the antibiotics. Tomorrow is my last day of the antibiotics and today is my follow up appointment with my neuro. Boy is she going to be happy when I tell her I stopped taking the Copaxone and I don't intent to start again.

Since stopping the C I have regained feeling in my feet, I no longer have lightening bolts flashing down my spine every time I bend my head. I can lay in my bed without my back spasming, and I can actually fall asleep before 3 AM. I still have numb spots in my legs, and I am still having Optic Neuritis issues, but I am feeling better than I have in months. Now I know this could be a coincidence that after eight months this "flare-up" is finally subsiding but I don't think so. I think it was the copaxone making it worse.

I finally found a perk to this dang disease!

2009-04-08T17:15:00.000-07:00

Actually I found 2 perks.

One I got a really cool t-shirt. Reminded me of the fight I had with my ex when he told me "well, you don't look sick" My response of course being that he didn't look like a Moron, but looks CAN be deceiving. I was playing online the other night and ran across a T-shirt on zazzle that says "I may not look sick but you should see my MRI." For some reason at 4 a.m. this gave me a case of the insomniac giggles and I decided I had to have it. I even customized it and added a pic of one of my MRIs it's a really cool shirt that my mom thinks is completely sadistic, so see even more oolness points there.

And perk number two... Well, not so much a perk as a ha ha I win! My fiance went in to have an MRI on his leg (you know, the one with the steel rod in it) Can't imagin why that hurt so bad. So he comes home and proceeds to get sick, and sicker and sicker until Sunday afternoon when i put him in the car and drove to the ER. An IV of morphine, 6 hours and about 20 tests later... He either has really bad bronchitis or walking pneumonia. Well wouldn't you know it started kicking my butt on Monday. I ended up at the doctors office on Tuesday begging for death to claim me now before it gets any worse. yes, me with a 103 fever makes a sick pathetic girl. He gives me a different antibiotic than the fiance and he decided another course of oral steroids would be in order. well it seems to be doing the trick aside from a sore throat i feel fine. Poor fiance can't get out of bed without getting dizzy. He is headed back to the Dr tomorrow. So ha! Sucker you give me your crap and I will get over it before you.

So yes those are my two perks... better drugs and t shirt.

Contemplating egg donation.

2009-03-26T15:18:00.000-07:00

I got the results of my MRI. As i suspected they were not good. The radiologist used the term progressing three times and considering it has only been 5 months since my last MRI it is a little scary and I am a little freaked out.

Started Baclofen to help with the back problems. So far no luck it works for about 20 minutes then wears off. Did I mention my body hates me??

I emailed the head of MS studies at Johns' Hopkins today, something I have been putting off for some reason and today I discovered that reason. I was waiting for more time to pass to see which direction the disease would take with the treatments we had tried. I sent him what seemed like my entire life story and begged him for help. I am waiting to hear back from him.

I am also waiting for my neurologist to come back from vacation. And I am waiting on the repair man to come fix my sink and my light in the kitchen. Seems my entire life has become one big game of waiting lately. I am not a patient person, waiting makes me over analyze any and everything.

Back to my title, while I was on the JH webpage I managed to find the page to sign up to be an egg donor. I am wondering if I can donate eggs for research, or if they would even want my eggs seeing as I have the whole MS monster attacking me right now. But, how great would it be if I could donate my eggs for something useful that could potentially save lives as opposed to sitting here mourning the fact that I am not going to have any more children? I made this decision a while ago, that if I am able to do it, i will. Even if it doesn't help me, if it can help someone else it seems worth it.

Baaa Baaaa balck sheep and Good bye NT I will miss you.

2009-03-25T07:14:00.000-07:00

So I have pretty much been banned from NT. Which sucks and was the one place I actually found some sort of balance. Unfortunately there is a certain moderator who has it out for me, and no it's not all in my head.

I even posted a goodbye to everyone telling them they can find me on myspace or yahoo and that message was also yanked by said moderator. Apparently I am not allowed to say that the reason I am leaving is because I am tired of having my hand slapped every time I post something. It seems I am too offensive for the MS community.

So for those of you still allowed to post on NT, if you could please pass the word I am still around on yahoo. Legzzalot there too. Same name on myspace.

Today's temporary moment of insanity brought to you by The T Cell Mafia

2009-03-21T11:39:00.000-07:00

Spent two days getting new MRIs. Resulting in massive bruises and more blown veins. You know, it's kind of funny. When I was in High School I really got into body piercings. I had 3 holes in each ear, an eye brow ring, a nose ring, cartlidge pierced on one ear, a belly button ring and even the little skin between your thumb and forefinger. Of course I had the platinum blonde spikey hair and neon pink bangs with cotton candy pink highlights throughout to go with all my metal. When I turned 18, I got a tattoo. Yup, I thought I was a real badass!

Now I give myself daily injections and every time I so much as look at a nurse I blow a vein somewhere. Nowadays if I want to rebel and be hardcore I leave my house without my giant bag of prescriptions. Driving to the grocery store is now an adventure and the highlight of the week. I find myself agreeing with the republicans and wanted to hold teenage boys down and cut their hair, and buy them pants that fit!

Last night was a fun adventure. My back started killing me. And by killing me I mean I can feel my spinal cord rubbing against my spine. So I decided to bite the bullet and take the percocet. Which I hate doing, I have always hated drugs and up until being diagnosed we didn't so much as own a bottle of asprin. But last night I simply couldn't take anymore pain. Percocet is a brilliant idea in theory.... unless in a pain riddled half blind from the Optic Neuritis moment of insanity you take a water pill instead.

I realized this mistake about an hour later as i got up to pee for the 5th time. It is now 3:00 in the afternoon and I am still awake. I think the water pill finally wore off. I moved my laptop upstairs to my bed and have been trying desperately to fall asleep since 11:00 this morning.

2 percocets and 4 ibuprofins later... my stomach is doing somersaults and I am having more hot flashes than a 50 yr old woman.... And my back is still spasming. I get my MRI pics monday. Doctor has decided we are going to try the IVIG since the steroids only managed to make me sick and aggravate the symptoms I was having.

Oh yeah I am adding pics from the two IVs they did for the MRI. So you can imagine the thrill I am experiencing at the idea of anoter 5 days of IVs every month.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I'm alive! That is the good news....I think.

2009-03-18T20:35:00.000-07:00

Hi everyone! I know I am MIA again. I promise I am not ignoring everyone. I did my 5 days of IVSM and I have been tying to recover ever since.

The good news is this round wasn't as bad as the last one. Doing it at home was a lot easier, but I did have some issues that will probably prevent me from doing it at home again. The bad news is, all of my symptoms are worse. I have been in my house for a week and today was the first time I was home without a babysitter.

This one unfortunately is going to be short I am trying to type with one eye closed and squinting out of the other. My right eye decided to go kuput since it's been over compensating for the left one since Dec. Balance is actually worse, but I was able to high five my best friend the other night in celebration of the fact I have not fallen down the stairs in over a week.

I even got to deal with my old company for two days while I was in the midst of steroid rages. I paid my Cobra payment and THEY didn't pay the insurance premiums. (I am not surprised) They have a habit of not paying their bills, I am so glad I don't work there anymore. Took me threatening a lawsuit and about 30 phone calls to get all of that settled.

Tomorrow I have the back to back MRI scheduled for the spine pictures and then I get to go back Friday for the brain. Now seeing as I cannot see clearly or feel the pedals to drive, I get to rely on my mother again, which makes me feel a little pathetic, but I am glad she is here.

Ok, I am going to go get some sleep...Well you know what I mean, I'm gonna go drug myself with enough muscle relaxers to tranquilze a horse and hope it stops the spasming long enough for me to get the 3 hours of sleep I need to prevent me from becoming dillusional.

IVSM Survival Kit!

2009-03-12T08:54:00.000-07:00

I am starting another 5 days of IVSM today. Which reminded me to go to the store before the nurse gets here and pick up all of the things I remember needing from the last time I did this. And then I thought I should share this for anyone who is about to go on IVSM. These are things my doctor didn't tell me I needed.

1. Gatorade! Lots and lots of gatorade!You will need all of the electrolytes you can get.

2. Hershey's chocolate bars!Big ones! Why? Because the IVSM causes your blood sugar to go haywire and they best solution is a little bit of chocolate to help regulate it.

3. Cranberry juice. The last time I was on IVSM I ended up on water pills because I was retaining fluid so bad. i gained 7 lbs in 3 days! You need to be able to pee to flush some of this out.

4. Mints. IVSM leaves a horrible taste in your mouth. The mints help you to make it thru the infusion without being nauseated.

5. True Lime water flavoring packets. These are very strong and normally don't taste very good. If you are not hydrated it increases your chances of blowing a vein. My last 5 day round resulted in 6 blown veins. I couldn't drink water because of the taste from the IVSM. The true lime is very strong and helped to override that taste so that I could drink water.

6. Excedrin. Migraines normally hit me when my blood sugar starts spiking and falling. Excedrin helps.

7. Make sure all of your prescriptions are refilled. You are not going to want to leave your house to go get medications if you run out.

8. Movies. I rented a bunch of movies this morning because I know I am going to be home alone and not feeling like moving.

9. Fruit, Veggie, and Cheese trays. I buy the little ones. It helps to be able to eat a little bit every few hours. These are very filling, they help settle your stomach and regulate your blood sugar. they are also a lot more nutritious than popcorn or candy while you are zoned out watching movies.

I am sure there are more things to add to the list, but these are the ones I remembered today. And if anyone else has any suggestions please feel free to comment. Input is always welcome.

Met my new neuro today.

2009-03-11T13:42:00.000-07:00

And I get to look forward to 5 days if IVSM again! BLAH! And I am scheduled for next
Thursday for spinal MRI and I get to go back Friday for another brain MRI. She wants to see how many new lesions are there and/or if the existing ones are growing. She did use the p word today. Fortunately she's not ready to sign that death warrant just yet.

She did agree that my last doctor was a moron for giving my the medrol dose pack and hoping it fixed the Optic Neuritis, and for not doing anything else when two tries with it didn't work. Or, as she put it "like putting a band aid over a bullet wound" I am seeing 60/80 out of my left eye....with my contacts in! That's a little freaky. I can see perfectly out of my right eye.

The good news is, I should be able to do the IVSM at home this time instead of having to drive to the hospital every day, go thru registration, and go to another building for IV therapy where they still managed to blow up all my veins.

The new doc seems pretty cool, even if she is a lot younger than expected. I don't know why I have a prejudice against young doctors, I guess I see them as inexperienced. But on the plus side she is not too far out of med school so hopefully she is a little more up to date than Dr. Idunnohaveanotherpainpill.

Oh and the weird electric current going down my spine when i bend my head is not me going crazy it is apparently a rather ordinary symptom in most MS patients. See I'm not as crazy as I look.

We are taking bets on the MRI results. So far the pot is up to $50. I am betting there are 5 new lesions. Some bet more, some bet less (they obviously have no idea how this disease works) and one person is betting no change. Let's see who's right.

Let's talk about SEX and MS.

2009-03-10T01:20:00.000-07:00

Why you dare ask would I approach this horrifying topic? Because it is 4:30 in the morning, I am wide awake and once again this disease has found a way to make me miserable.

Somewhere along the trip from Virginia to the far reaches of Kentucky my legs decided being numb wasn't enough and they needed some company. Now my butt, both hips, two fingers on my right hand and my nether regions have joined the numbness wagon.

You have to love the irony here. I sell sex toys for a living..... it's kind of like an impotent man selling condoms...it's downright disturbing!

One lesson I learned over the years in past relationships was that as a woman we have the ability to do many things. We can create life, we can have multiple orgasms, we can bleed for 7 days and not die, and we can even fake orgasms. The latter is a very bad trait we inherit as women. I have learned the hard way why women should not do this. Think about it. Men are simple creatures. They need direction. If you are faking an orgasm when he is obviously not pleasing you he will interpret this as a job well done and he will continue the unhappy maneuvers.

My fiance and I are very open to one another, and very honest with each other. Therefore, I choose not to fake orgasms with him. If something he is doing is not working, I find it best to let him know so that we can do something else.

Now here is the problem. I have NO feeling in that area right now. This happened once before. We tried, it didn't work. We stopped. In fact, I think this was one of the few times he has seen me cry. Yes, I cried. It's a horrible feeling when you lose your feeling.

I know I am not the only one who has gone through this so I thought it was time to share this story. Ok, so being the moral young lady I am I will tell you the moral of this story: Faking orgasms is bad, numbness in your nether regions is worse.

Never thought I would be asking for the IV steroids again!!

2009-03-02T19:54:00.000-08:00

You know back around Thanksgiving when I was at my mom's house trying to sweat through the withdrawals from the last round I remember making a solemn vow no matter how bad it gets I am never doing IVSM again! NEVER EVER EVER AGAIN!!

You can say my last round didn't go so well. At the end of day one I woke up at 3 AM feeling like superman my powers were restored! I could feel my feet, I could feel my nether regions, life was good.

Day two unfortunately was not so thrilling. I still had the horrible taste in my mouth that one gets with solumedrol. But I arrived optimistic. After the nurse blew another 2 veins trying to insert the IV we finally got it rolling. The motion sickness kicked in as we were leaving the hospital. Then the migraine hit when we got home and I found myself unwilling to budge from my somewhat comfortable position on the sofa.

Day three was what I considered the tie breaker. Round one was a victory round two I lost to a drug. Day three I had my butt handed to me on a silver platter with the word "LOSER" engraved in the middle. By this point I was sick as a dog and getting worse by the hour. I also managed to gain seven pounds in 3 days which I believe was all fluid and it was all collecting in my face.

Day four almost didn't happen. I refused to go get more. I stomped my feet and whined and screamed until my neuro finally agreed to see me before I went in for more. He takes on look at me, and prescribes sleeping pills and water pills to make me pee before sending me on my merry little way to go get another IV. Another blown vein...this makes 5 in 4 days. What can I say, my body doesn't like needles. I came home and took both the sleeping pills and the water pill. An hour later as i am in zombie mode on the couch I realize this was a bad idea. I am exhausted I want to sleep but now I have to pee every five minutes. I swear to you I would go to the bathroom and by the time I made it back into the living room, I had to go again. This was also the night I wanted to kill my fiance for bringing home the wrong kind of chicken. It was a huge fight. Looking back I may have over reacted just a tad.

Day five was the absolute worse. Day five was also moving day. You see five days after being diagnosed and the day before my birthday we found out we were moving. Seems the landlord was collecting money but not paying his mortgage and he was foreclosed on. Instead of telling us this was happening he continued to fill our heads with silly notions that we would be able to buy the house once our lease was up. And we had continued to make repair after repair. The call from the bank letting us know we had less than 3 weeks to move was a little disturbing. Now mind you my spinal cord is swollen and I am under strict orders not to lift anything over 20 lbs. The really fun part to this was that we could not get into the new place until the Monday after Thanksgiving, which meant putting everything in storage and heading to my mom's for five days. All of which my poor fiance did by himself while I laid there helpless and miserable. This also meant I had to drive my car 50 miles to get it to moms house. It was the longest trip I have ever been on. And at the time I was making that commute every day. My mom lived less than two miles from where I worked.

Two days later after all was said and done and I had a total of 6 blown veins and the meds finally started to work their way out of my body I was feeling a little better. My back started spasming that night and I thought it was because I was attempting to sleep in a water bed. But every time I would lay down my back would got berserk. I finally managed to fall asleep only to wake up soaking wet. At first I thought the bed had busted. Then I realized it was sweat. Enough to make my clothes completely soaked. I get up, jump in the shower and change my clothes and my bed stuff. In the five minutes it took to change the bedding out I was soaked again.And now I am shaking. So I call the neuro... who tells me it's withdrawals and I need to sweat it out. Three days later I was somewhat back to normal.

So now you understand how desperate I am to fix this crap. I am about to go in and ask to go through this again, because I cannot find any other options. Which means sending my daughter away again until it is all over. This is not a side of me that I want her to see. Plus this time I think I am going to let them leave the IV in, even though that didn't work the last time. We will see.

Oh by the way, yes I added music. I needed to find a way to entertain myself...and others. Of course you can always go over to the player and hit pause if you don't want to hear it. I know I know it's all girly. Just didn't think the Rob Zombie fit into the page theme.

It's March!!

2009-03-01T18:08:00.000-08:00

It's snowing!

Spring cleaning time will soon be approaching and along with the housework comes time for some soul cleansing. I thought I would take the opportunity to share a few insights about MS. Things that I have learned and things I should be grateful for.

I have learned that my body will do what it wants to no matter how much I fight it. I am grateful that I have a supportive family to help me.

I have learned that our next house will be one story. I am tired of falling down the stairs! I am grateful to still feel the pain of my a$$ hitting the stairs because it means I still have feeling there.

I have learned that worrying over what may happen next week only makes you sick this week. I am grateful that I worry, it means I still have something to lose.

I have learned that one side effect of this disease the doctors don't warn you about is what I call The Murphey's Law Effect- anything that can go wrong will go wrong and there is no foolproof plan. I am grateful that I was raised to be a smartass because I can find humor in the midst of the chaos.

I have learned that I should not tell my mother when things begin to fail on my body as she feels the need to call me every 30 minutes to ask how I am feeling. I am grateful my mother is still around to pester me every day all day.

I have learned what Optic Neuritis is. I really can't think of much to be grateful on with that one other than it is only in one eye for now.

I have learned that sex is impossible when your nether regions are numb. I am grateful the first round of steroids fixed that problem.

I have learned that electric shocks going down your spine when you bend your head doesn't hurt. I am grateful for the patches of numbness it makes the daily shots of copaxone a lot more tolerable.

I have learned not to take life too seriously, you will never make it out alive. I am grateful to still be here to watch my daughter grow.

updates

2009-02-16T17:59:00.000-08:00

It's been a while since I have blogged on here. For that I am sorry. I have been locked in my house for the last few weeks battling the random symptoms that come along with this disease. I did start Copaxone back in the beginning of Jan but have yet to see any improvement. If at all possible I swear it's been going downhill lately. The numb legs are back, my left eye has been blurry since December, we have done 3 rounds or oral steroids. There was a day that I was in so much pain in my spine I ended up calling my mom to drive 50 miles to come get me and take me to the ER b/c my neuro couldn't see me. Did another round with the oral steroids which helped the back pain, but nothing else.

I have also started my own company out of my house which requires a LOT more time and energy than I expected but it is finally coming together. I now have a website, 3 different web stores, and the ebay auctions on top of it all. But I have finally turned a profit. Not enough to justify staying home with no job, but enough to make me realize that I CAN do this. And hopefully in a few months I will be able to justify not working elsewhere. I LOVE not having to answer to anyone else and I LOVE that all of my work is done on-line and I don't have to answer phone calls and I don't have to deal with people if I don't want to.

(Insert shameful advertising here ---->>> www.alonetimepleasures.com )

My fiance gave me the best present anyone with this disease can get. He bought me a king sized pillow top bed for Valentine's Day. He figured thanks to this cruddy disease I have been spending more time in bed, and I may as well be comfy.

Thanks to MS

2009-01-06T17:57:00.000-08:00

Well thanks to MS I don't think that I want to find another full time job. I have decided to make the investment in myself and start my own business. Here's to hoping I can make it work!

Yes, sex toys!

Congrats! We figured out what is wrong with you!

2009-01-02T20:26:00.000-08:00

You have MS! Yes, it is an incurable disease, no we don't know what causes it, and all treatment options are pretty much going to be a guess from here on out. For a 27 year old, this diagnosis was a death sentence. I have found an incredible group of people who are living with this disease and going through the same issues as I am. I have also been introduced to people who's symptoms are a lot worse than mine and it makes me grateful for what I have.

I have been keeping a journal of thoughts and problems I am having with this disease, and I have been selfishly holding on to it. most of it is just bitter complaining about this disease and my body refusing to work properly or notes to ask the doctor. I have also learned a lot about this disease and different treatment options along the way and I thought I might be able to help someone else by sharing my experiences.

If you have this disease, then you already know why I chose the title MSucks. Because it really does. It does help to have someone to talk to who has been through this. your family and your friends try to be there to support you but they have no idea how to help you and they have no idea what your body is really going through. they don't understand the fatigue and the frustration when your legs decide not to work. They will never understand the terror when your body doesn't respond to the meds and you don't know if this symptom is ever going away.

Like I said, I have been very fortunate to connect to a world of people who battle this disease every day. One of my favorite websites which has become a daily source of both information but also entertainment and understanding is http://neurotalk.psychcentral.com/

Ok now that introductions are over, I will start uploading my personal information to share. If it helps one person to realize how this disease effects you or if it helps one person not to feel alone in this battle then my job is done.

Are you friggin kidding me???

2008-12-31T17:54:00.000-08:00

So I was laid off today. I am no longer working. And the real kick in the teeth..... They made my new boss (the one I interviewed, I hired, and I trained) let me go. I spent 3 months running the place by myself, I grew from 11 employees to 15, I was averaging over 15% more in sales than the previous manager, I was passed up for the job they had me doing because "I was not qualified" and I had to train the new guy and they let me go!

This will not be a bad thing. I will not allow it to get to me.

2008-11-16T16:13:00.000-08:00

That about sums it up

I don't even know who I am anymore. My entire world has been turned upside down and inside out in a matter of 3 weeks and there is absolutely nothing I can do about it. I have never been so scared or helplessly lost.

I am in constant pain and it is getting worse with each day that passes. It's a lot worse than we originally thought and I am terrified the numbness isn't going away. And now it's spreading to my left side and I feel it spreading upwards and I know it is only a matter of time. I am hopeful the steroids will work, because if they don't, I have no other options. And the thought of this is unbearable. There is no "plan B", there is no miracle drug, there is no magic pill.

I want so desperately to curl up into a ball in my bed and stay here for the rest of eternity, yet I fight this urge every morning. I trudge on and force myself to move, to get going and to get on with life. Part of this is sheer stubborness, and I refuse to succomb. The other part is because my life isn't just about me anymore. I have a daughter who is my world and it kills me that I am not supposed to lift her up anymore. She wants me to hold her and I can't and it is just not fair. And I have no idea how to explain to her what is going on with my body. She is 4, and she is the reason i refuse to give up. She is the only thing I have ever done with my life that has made sense. She is growing up so fast.

I have a fiance who has stood by my side, the silent and rock steady person who's shoulder is soggy with my tears. I know this is killing him. I have watched his heart break and know it is my fault. Yet he remains steady and unfaultering, an emotional robot at times. I don't know what he's thinking and it drives me insane. I don't know how he is dealing with this, and becuase of that I don't really want to tell him how bad it is getting. I don't think he could handle it and I question if he is really staying. We are looking at marriage and the finacial benifit that would come with it and I feel guilty that he is put in this position. I don't know what i have to offer him, I don't know what's going to happen 6 months from now. I don't know how my body is going to hold up, and I feel guilty for wanting to marry him. Does he really know what he is getting into? And the very thought of living without him tears me up inside. I don't question his love for me I never have, but I don't know what I have to offer him.

I keep trying to wake up form this nightmare and each morning I awaken so stiff that I can barely move and I feel like reality has come back to slap me in the face once more.

I am angry that I have no answers. I am angry that I can't beat this, and I am angry that I have no one to blame for this. It's not like I slept with someone and caught this, it's not all genetic, it's nothing that I could have done in my life to prevent this disease from taking over my body and I am angry that I cannot blame anyone for it.

And if it isn't bad enough that my body is failing me and refuses to cooperate I can't seem to find a common ground with my emotions and it's like the roller coaster from hell that just never ends and I don't know how to deal with this on my own. I know that I have to be strong and I know that I have to fight this, but I don't know how. I am entrusting my life to a doctor I have met all of 3 times and I have no choice. I have been poked and prodded, X-rayed, scanned, and now I get to go have a spinal tap. Nothing like the thought of a needle being guided past your spine and into your spinal cord to make you want to keep on going. I am just so lost.

2008-11-15T17:37:00.000-08:00

If you have ever wondered what it is like to be diagnosed with this disease this picture says it all.

This has got to be my favorite MRI pic!

Poetry calms the nerves.

2008-11-10T17:36:00.000-08:00

This piece of glass, reflecting back to me

Images of an empty shell, the woman that used to be

Tattered and torn, a soul lost in despair

I am no longer strong, too exhausted to care

What a miserable existence when one's heart turns to stone

Emotionless dark eyes, where life's light once brightly shown

Who is this woman staring back from the looking glass

She looks so tired and haggard, not like the woman I knew in the past

This broken body, so tired and so frail

Her skin has become withered, ghastly and pale

I feel so worn, it's hard for me to see

What's become of this woman, that used to be me

No more of this wretched monster reflected in this evil glass

Pounding the mirror, the pieces shatter, I watch them smash

Like the thousand dreams of my youth, crumbling down to the earth

I sit and reflect on what this life is worth

The ensuing silence is deafening, my heart beating fast

So much of myself learned from the woman in the looking glass

Multiple Sclerosis? Are you sure??

2008-11-05T16:58:00.000-08:00

****Retro Post more of a fill in the blanks***
I will start from the beginning so you can have an idea what it is like to have this disease.

Back in August (2008) I had a spot on my leg that was going numb. I thought it was from the really bad sunburn I had gotten a few days before. Then, I went bowling with my daughter and my fiance. Somehow I managed to slip and fall landing on my hand and my butt. The next day when my arm swelled up and turned purple I decided to head to the doctor. As much as I hate doctors, but my back was hurting from the fall too. Sometime during the day my entire leg went numb. Which by the way if you have ever tried to drive or walk with a numb leg, you will realize how funny it is.

Doc does all kinds of x-rays and tells me I have broken three little bones in my hand and wrist, and pulled a tendon in my arm. He assumed the back pain was from the fall and referred me to an orthopedist. Well, in the two weeks time it took to get in his office, the numbness had spread and I was having a hard time walking. He ran all kinds of tests and decided it was not my spine. It is not a pinched nerve he says.

So doc #2 refers me to a neurologist. Takes another week to get an appointment with him.

In the mean time I am googling all the crap that is going on with my body. Could be anything from a pinched nerve to worst case scenario, Multiple Sclerosis. it can't be MS! Nobody in my family has ever had it that I know of. There is a history of cancer, thyroid disorders, insanity, even a few cases of transgender surgery, but not MS that is ridiculous.

I Finally go to the neurologist. I was expecting him to tell me the Ortho was mistaken and it is a pinched nerve. I was expecting him to tell me to try Chiropractic. I was NOT prepared for him to tell me there is something wrong with my spinal cord and I need to go immediately for an MRI. He would not tell me what he thought it was at this point he told me it could be a number of things but he wants me to get the MRI right away so that we can figure it out. So his nurse schedules my appointment for the MRI. She was able to get me in that same day, and as I am standing there she is on the phone with the radiologist, and she says suspected lesions on the spine. Flashback to all of the google research...The only time I have ever heard anything referring to spinal lesions was MS.

So I freak out! I had a few hours to kill between appointments and as soon as I got in my car to leave it hit me....I might have MS. It hit me like a gunshot. in fact, I think being shot would have been easier to deal with. And as with all of life's problems I call me mom. I am crying so hard she can't understand a word of what I am saying. I managed to pull myself together and tell her whats going on. She tells me I am insane. It's not MS and there is no need to freak out until the MRI is over.

I make it through the MRI and the doctor's office calls me the day before Halloween and tells me I need to come in the next day. Hey my luck must be kicking in I think. Halloween is my favorite holiday. he can't give me bad news on my favorite day of the year.

Boy was I wrong! The first thing he says to me.."I have the results of your MRI and looks like what I expected. You have 4 lesions on your spinal cord. If I was a betting man, I would bet my life savings you have MS." But to be sure he wants me to go in for blood work, another MRI (on my brain this time)and a lumbar puncture so that we can rule out anything else that causes MS like symptoms like lupus or lymes disease.

**** Updates to this post******
2 sets of bloodwork, 2 MRIs, a spinal tap, a second opinion, a third opinion, and even a few radiologists later.......

It's confirmed. You have MS !

Like most people who are diagnosed with an incurable disease that has no definite cause I was scared, confused, and trying to figure out how long I have been living with this. It's been a frustrating roller coaster ride and this is just the beginning.

They found 11 lesions in my brain, 6 in my spine, and yes my O-bands came back positive. We also did 5 days of IV Steroids that kicked my ass pretty hard.