MS is killing my sex life! (warning, TMI post)

After several years of being on the high dosage of Ambien it stopped working for me. My doctor refuses to put me on anything else as the three other ones we tried did nothing for me. As a result, he decided we should add Elavil to the mix. This was also ineffective. We then increased the dosage of Elavil each visit until we found a combination that worked to help me sleep. Added to my 10 mg of Ambien is 150 mg of Elavil. This combo works most of the time yet I still have nights that I don’t sleep and I have to take it on a pretty empty stomach or it doesn’t work at all. Unfortunately with my family’s schedule I am not always eating dinner before 6 pm.

One major drawback of taking Elavil that I have never had happen before is a lack of sex drive. It got up and walked away. So my options are do I choose sex or do I choose sleep? Because I can’t have both. It’s very odd. I have been on Elavil before but at the lower dosage and it didn’t change anything. Sadly between the MS and the broken foot and the 2 kids most nights I am more inclined to want sleep. Plus there is the added issue; if I don’t fall asleep before my fiancé, I am up all night listening to him snore. And let’s face it, men become comatose after sex. So when I say I have to choose between sex or sleep I mean if I choose sex I get zero sleep that night.

Plus I had surgery 2 weeks ago and I now have 2 external fixation devices on my foot. These are to apply pressure to the outside to hold the bones while they heal around the inside hardware. It was not an easy surgery and it hurt like hell. So my foot is wrapped in these bandages and I am to elevate it and try not to move it too much. We were supposed to do this surgery last month, but thanks to one idiot dr we ended up cancelling last minute (because it was the pain management dr, so he was refusing to get my refill straight with insurance co).

The stress of fighting with doctors and being tested for EVERYTHING within a 2 week span lead to yet another MS flair. This meant waiting a month after cancelling surgery to reschedule it. After surgery of course was another flair. My body doesn’t like being cut open and drilling into my bones; Go figure!

So I am immobile, in pain, broken, in another MS flair, and my own body is kicking my ass. Sex? Not exactly high up on my priorities right now. This really is out of character for me. It took me 3 days of thinking about HOW we could have sex while keeping my foot out of it… and not jolting it in the process. Logistically, it’s damn near impossible. Alas, I did finally come up with a yoga like position that worked. It was like hitting the lottery.

Except… thanks to my stupid MS I am numb down there… but only on one side. So it was weird. It’s just frustrating. It’s also frustrating for the man because we went from a minimum of 3 times a week to once every few weeks. Hoping after I am done healing from surgery things will return to normal. Also going to have to try decreasing the dose of Elavil and hoping it works, though it didn’t in the past. Wish me luck!

Wonder if they make a female version of Viagra?

Band Aids and Bullet Holes

Band Aids and Bullet Holes There is a saying you will hear me say a lot. Treating the symptoms, and then treating the side effects of one drug with a second drug makes about as much sense as slapping a Hello Kitty Band Aid over the hole someone just shot into your chest. It will not fix the hole, it will not stop the bleeding, but it will cover it up if only for a second or two. You can still bleed out behind the Band Aid. When it comes to Multiple Sclerosis every doctor I have met has his own approach to Band Aids and bullet wounds. One gives me medicine to treat the symptoms of MS and another gives me medicine to treat the side effects of the first drug. None of it actually fixes the problem, and before you know it you find yourself taking 30 pills a day and you have no idea what pill treats what. Then you have the doctor who decides you are on too many pills, cuts you off of most, and within a year you find he has written you at least 6 new prescriptions, all in the name of science. I ended up cutting myself off of most of my meds and got to go through the ever so pleasant experience of withdrawals because I could no longer take the amount of poison I was dumping into my body each and every day. Another sad discovery I have made recently; when it comes to doctors and MS patients, the drug companies have convinced the doctors that you need to be on something to treat the disease. If there was any drug on the market that came with more than a 35% efficiency rating, I would possibly agree. However, this is not available. This also leads me to mention that although the great doctors take the time to diagnose the proper form of MS you have, most refuse to actually write it on your chart. There is a very good and bad reason for this. If you are not RRMS, your insurance will not approve any treatments because the FDA has not approved any treatments for any form of MS other than RRMS. There are 4 different categories of Multiple Sclerosis you can have. • RRMS- Averaging 85% of people diagnosed is RRMS (Relapsing- Remitting Multiple Sclerosis). This is where symptoms come and go or get worse and then improve over time. RRMS patients tend to respond well to not only steroids but also most of the DMDs (Disease Modifying Drugs). • PPMS- Effecting around 10% of the MS community is PPMS (Primary Progressive Multiple Sclerosis) I speak from experience when I say symptoms hit you like a freight train and never let up, though certain ones can come and go, and when you think it will not get any worse, it does! Doctors will tell you this is a slow and steady incline of symptoms; I will tell you that is bullshit! I will also mention PPMS is characteristically known to cause more damage in the spine than in the brain and one of the classic tests that determines this form is that you do not respond to steroids as it is not inflammatory. Well, you do respond, just not well. • SPMS- (Secondary Progressive) this one is a bit confusing, it starts out as RRMS and about 50% of people with RRMS will end up with a SPMS diagnosis within ten years. This is kind of like a combination of RRMS and PPMS. I feel this is more due to dr error as they are so quick to point to MS but not take the time to figure out exactly what type you have before they put you on drugs. • PRMS- 5 % of people who have MS are later diagnosed as PRMS (Primary Progressing Multiple Sclerosis). With PRMS, you have a steady increase in symptoms with the added unpleasantness of exacerbations (flare ups). I am not sure how the determination is made between PPMS and PRMS. Personally, I have PPMS (or so I am told) yet, I still experience exacerbations; somehow I am not in the PRMS category. My most recent trip to the doctor was as always, a major source of stress and frustration. I am not sleeping, when I do sleep I move constantly and I wake u p in pain. On a good night I get 4 hours of interrupted sleep. I have been on every sleeping pill they offer, and was on Ambien CR at 12.5 mg and was still ending up taking more than one if I wanted to sleep. Which of course lead to the other problem…running out of pills and not sleeping for half the month because they can only give you 30. If that wasn’t ridiculous enough, some moron in California wrecked their car and blamed it on the Ambien. So Congress intervened and decided no one was allowed to have more than 5mg. Dr changes my prescription to 5 and I slept for 6 days before I was out of meds. He was then able to increase it to 10 mg...woo hoo. Then he wanted to put me back on 12.5 but of course since Congress knows better than any of my doctors… my insurance denied it. I have been on this medication for over 2 years, my body has gotten used to it and it no longer works. I made the mistake of asking for something else. I was told no. Not because I am on too many medications, not because the next step is highly addictive (mind you I have been on morphine for 3 yrs), but because I refuse to go back on Tysabri. It does not seem to matter that Tysabri made me sick 2 weeks out of the month, and it ran a risk of killing me. None of that seems to matter because it stopped me from growing new lesions. I am not saying that all doctors are idiots and I am not saying do not try the DMDs. What I am saying is that you need to listen to your own body. You need to be able to determine for yourself if something is helping or not. This is a decision that you and only you have to live with. At the end of the day the doctor gets to take off his lab coat, go home and have a nice evening. You get to go home with not only this drug and all the effects of it, but the MS comes with you. It sucks, and there is not a damn thing anyone can do about it. Some people do great with the DMDs, and some do great with Tysabri. I hear stories all the time of people looking forward to their next infusion because it made them feel great and gives them energy. I was the opposite. I went home after an infusion and crashed, and then I spend 2 weeks fighting both a sinus and urinary tract infection. And any time anyone came near me with germs, I got sick. This is not an easy way to go when you have two children to take care of. I stopped the TY when I was sick almost a year ago with my 3rd round of the flu. Then I broke my foot and ended up getting surgery, then I broke that, and on and on for a year. I got 2 infusions between the 3 surgeries. And I got sick both times. I have finally come to the conclusion I would rather not spend my time being sick and I will just deal with whatever this disease throws my way. I tried Copaxone, had no effects from that at all until my MRI showed I grew 11 new holes while on it. Then I tried Avonex, which gave me flu like symptoms with every shot and then I broke out in hives because I turned out to be allergic. This knocked Betaseron and Rebif off the list because they contain the same ingredients. So we moved on to Tysabri. I feel like I have run out of Band Aids and my doctors refuse to allow me to live life the way that I want. Then I remembered that my doctor’s word isn’t law. In fact, last time I checked I pay them to provide a service, thus they work FOR me. And if they refuse to get on board and do things my way, I will replace them with doctors who realize I sign their checks. I do urge everyone to watch out for doctors who are quick to hand you a Band Aid instead of offering relief.

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.

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.

Coping with Numbness and Decreased Genital Sensation

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.

Feeling attractive when you have MS

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**

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

Self Cathing- worst day ever!

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

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.

Congrats! We figured out what is wrong with you!

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.