Doctors Doctors and more Doctors!!

Having Multiple Sclerosis is hard enough, but trying to manage this disease without a good team of doctors is a nightmare. In 3 years I have been battling this disease, I have met almost every specialist in this city, and this is NOT a small town. I have had my share of bad doctors and I have heard horror stories from others about their own doctors.

What I have discovered is this: YOU are your best advocate, and the doctors work for you, you should not feel insignificant and your doctor should not try to tell you what you are feeling. No one knows what is going in inside of your body other than you. Your doctors are here to help you manage your symptoms. If they cannot do so, or they try to tell you that your symptoms simply cannot be what you describe, then it is time to find a new doctor.

This was a lesson learned the hard way for me. I was completely dumbfounded when I was hit with the MS diagnosis. It was not something I expected, I was not prepared for it and I honestly knew very little about this disease when I was diagnosed. My neuro who diagnosed me assured me that this disease was treatable, and manageable. Every new symptom that popped up during those first few months were dismissed and I was told it was all a result of stress and I needed to relax. While I do agree that stress does indeed have a physical impact on those with MS I also felt belittled and ignored.

During my first round of IVSM, I had gained 11 pounds in 2 days and was so sick I wanted to die. He told me this too was a normal result of the IVSM. When I went into withdrawal after my 5 day round, I was told this too is normal. A few months later when I started having Optic Neuritis (ON) issues, he brought me in for EP testing and confirmed that I had ON. He then ordered a round of oral steroids which did nothing to stop the ON. At my follow up he says, and I quote "I'm sorry the steroids didn't work, nothing else we can do at this point. Come back to see me in 3 months". THREE MONTHS?? Seriously, I cannot see out of my left eye and you tell me to come back in 3 months?

It was at this point that I began to lose feeling in my hand, I could not control my balance, I could not feel my feet and I still couldn't see out of my left eye. I decided it was time for a second opinion. I made an appointment with a new neurologist who ordered a full set of MRIs, another round of IVSM, and started me on Copaxone. She listened to my symptoms, prescribed medications to treat the symptoms, and scheduled a follow up appointment 2 weeks later to check my progress. I have been seeing her ever since. I have failed on Copaxone, I was allergic to Avonex, and I have now been on Tysabri for a little over 2 years. I have had over 32 MRIs in 3 years and I know that my doctor stays on top of the progression of this disease and how it effects me. If I have a question, or I need something taken care of, I know that I will get a call back that same day and if I need to come in, they will do what they can to fit me in. This is how your doctors should treat you.

My primary care doctor has been the best person I have ever had on my team. He keeps track of all of my other doctors, he keeps track of all of my medications and he keeps in close contact with my neurologist. If he does not know the answer to my questions, he admits it and then researches until he has an answer. He was detrimental in my disability case and treats his patients with respect. He is the reason I was able to meet so many specialists. He has had me tested for everything he can think of to see if there are underlying causes to my symptoms that may not be related to MS instead of trying to dismiss each and every symptom into the "well, you have MS" category as so many other doctors tend to do.

On top of MS, I fell and fractured 2 vertebrae in my spine. I made the mistake of going to a local ortho, who had a sterling reputation. Unfortunately this was the biggest mistake I have ever made and I will live with that decision for the rest of my life. Instead of passing me on to someone who knew what they were doing, he prescribed physical therapy. I followed the doctors orders for 6 weeks even though the pain continued to get worse. I continued following up with the doctor and told him each time that the pain was getting worse. After 6 weeks, I ended up asking my neuro to order another set of MRIs because the ortho failed to do so and could not find anything on the XRays to explain the increased pain. The result of the MRI was that I now had 4 broken vertebrae. Going to physical therapy caused another 2 fractures. At this point the doctor proceeds to tell me there is nothing he can do about it and that I should continue with physical therapy. I found a new doctor at this point. Unfortunately, due to the new fractures and the time elapsed from the original injury, I was no longer a candidate for surgery. The fractures developed Schmorle's Nodes. Essentially, it means I have 4 herniated discs between the fractures that had herniated on the inside against my spinal cord and there is nothing we can do about it except for prescribing narcotic pain medications and I get to live with this pain for the rest of my life.

This is why any time I have any injury I now consult a minimum of two doctors. A second opinion is invaluable even if you insurance does not want to cover it. I am not saying you should not trust your doctors, but if you have any doubt that your doctor may not be the best person for the job, then it is time to get a new doctor.

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

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

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

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

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

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

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!

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...

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

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.