Insomnia Insomnia INSANITY!!

I am so done with these damn doctors! I went to see my Primary Care Doc last week. This was a follow up to two weeks before. He got the results of my blood tests and he sees that I am both vitamin B and vitamin D deficient. Well DUH I have MS!! The good news, my thyroid levels are normal. None of this explains my sleeping issues.

So he started me on B12 shots and added a high dose vitamin D supplement. B12 shot… excellent idea! Except of course for the fact that giving me super energy boost when I have been complaining for months about sleep issues seems to be a pretty logical bad idea.

I have been on Ambien for almost 3 years now. It stopped working and when it does work, I sleep less than 4 hours. He added Elavil a while back. That was also not working. Then there was the lovely issue where my congressman decided that I was no longer allowed to have the 12.5 mg of Ambien CR I have been on for almost 2 years. Some moron wrecked her car and blamed Ambien so congress decided no one was allowed more than 5 mg. So I didn’t sleep for 3 weeks. I was then able to be bumped back up to 10 mg. Still not working. I am trying to explain to him that after 3 years on this drug my body has grown immune to it.

I have tried every other sleep aid he has to offer. I was then told to double up on the Elavil. Did this for 2 weeks prior to last week’s appointment. Still not working. And at this point I am out of both Ambien and Elavil.

My doctor in his infinite wisdom has decided that he isn’t going to write me a script for anything to help me sleep until I follow up with the neuro I haven’t seen since last October when I stopped Tysabri infusions. I don’t have a reason to see her. The only medication she was prescribing for me was Tysabri. I am PPMS. I have had no new symptoms since then that she can do anything about, thus what is the point?? I was also told to wait to follow up with her until he got the results of the blood tests.

And now he is blackmailing me into making an appointment with my neurologist by withholding sleeping medication. I mean seriously??

This is the same week my pain management doctor was fired, and I was passed on to the new doctor at that office. This man is a graduate from Harvard Medical. He decided my case is too complicated for him (i.e., I have MS) so he has passed me on to the worst hospital I have ever dealt with which is in Richmond, a good hour and a half drive each way from my house.

I have been awake since 9 a.m. yesterday morning. 27 hours of being awake and the insomnia is causing more frustration than I can handle. I am also bipolar…which ALL of my doctors know. Do they not realize that not sleeping is a trigger for people who are bipolar, and the stress from all of this is a trigger for MS symptoms??

I am so frustrated I want to punch someone in the face!

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.

When most people think of Hell, they think fire, and demons, and little red men with pitchforks. That is not what I think of. Right now I feel trapped in my own version of Hell, a personal Pergatory. I feel useless and utterly broken. I find myself questioning those I love as they have betrayed me once before and I don’t know how to bring back that trust. I don’t know how to stop the suspicion that he is hiding things from me. I don’t know how to release this hurt. I find myself trapped in this broken body andf no matter how strong my will, no matter how strong my spirit I cannot escape this prison. Its been 17 days since I broke my foot, 16 days since I turned in my crutches for a wheelchair, 14 days since the surgery. It feels like a lifetime has passed and I have another 70 days trapped in this prison that is my own body. I have been confined to one half of my house. There is nothing I can do but wait. Wait for the healing, wait for the aftermath, wait for others to step up. Sit by and watch the bills pile up, watch life pass by. My child is ill and I feel helpless. I cannot “do” anything around here. I am waiting for the fallout. I am trying to face these demons and keep my emotions in check. For someone who is sentenced to be home alone, I haven’t really had alone time. I haven’t had time to grieve the loss of a father figure. I missed his memorial service, I found out about his death on my daughter’s 8 year old birthday. It wasn’t a shock. We found out the day before Valentine’s Day that he was dying. The cancer had been everywhere by the time it was discovered and a man that was the love of my mother’s life for 40 years was fading fast. I didn’t make it down to see him before he died and for that, I will have to find a way to deal with my own guilt. The biggest fear I have had since the day I was diagnosed with MS was that I would end up in a wheelchair. The day I was diagnosed as Primary Progressive, I had to face the fact that there was a 95% chance I will have to face that chair. To some, this is an aid to help them remain mobile. To me, this is a death sentence. This wheelchair may as well be an electric chair.

MSisms

There are some MS sayings that simply either annoy or amuse you, I refer to these as "MS"isms. Some of the MSisms I have encountered have struck a chord and stood out over the years. Thought I would share some insight as to how these things effect me. I am not speaking for other MSers. I am speaking for me and my opinions. please do not be offended. I know that one of the biggest things I have learned from having MS is that educating others is a necessity. I am not picking on anyone. If ever I have been offended by the following comments, you can rest assured I have pointed it out to you. That is one thing about me...I don't hold back.

For starters there is "I have MS, MS doesn't have me", that is the biggest load of crap I have ever been fed by anyone with this disease. Please share with me your secret to beating this disease and stopping it from ripping apart your life and your relationships and your body. I have yet to figure out this magic formula. I wake up with the aches and pains as a painful reminder that this disease is still here. I take a handful of pills to force my body into sleep every night because I have lost the ability to do it on my own. If the disability, fatigue, and depression are not kicking me in the ass, I am still consciously aware of my limitations and my inability to make any plans that do not involve doctors or needles. No offense to those who carry the "I have MS" torch, but I cannot say I have a grip on this disease. I can say it has a grip on every aspect of my life.

And there is the ever thoughtful "But you look so good!" myth. This disease must only effect pretty people who naturally look so good. I never got so many compliments on how good I looked before this diagnosis. Now I can leave the house with my hair in a bun and in jeans and a t-shirt with no makeup on and still I am told how good I look. It's nice to know I look better than I feel. I may look good, but I honestly feel like I have been dragged into the depths of hell and the devil is refusing to let me go back. This my friends ranks up there with "well, you don't look sick". You don't look like a moron, I guess that old adage is true after all "looks can be deceiving". This is also one of the hardest aspects of dealing with the Disability idiots when it does progress to the point that your doctors ban you from returning to work. You look perfectly fine, how on earth can you be so disabled?

You're my hero. Really? Those years I spent as a medic, my devotion to my community, my children, my family... these things didn't make me a hero. Being diagnosed with this crappy disease, fighting to regain the tiniest bit of the person I used to be, being treated like my doctor's personal lab rat... this makes me a hero? There are times when you feel like you are fighting for a longer and more painful death and sometimes it really isn't worth the fight. Believe me, I am no hero. I don't do heroic deeds, I am no longer able to help people other than myself because of disability and fatigue. A good day for me involves scheduling the entire day around a nap and then being surprised when I actually stay awake and can accomplish small tasks like cleaning the house. I sure as hell don't feel like a hero, but thank you.

Have you tried.... *insert random idea here*? Because I saw this thing on TV, or Youtube... I am not trying to be a pain here, I do realize you are trying to help. However, according to Youtube you can unlock your car with a tennis ball and make Mountain Dew glow in the dark by adding baking soda. Think about it. Do not take medical advice from Youtube. It is a bad idea. They also have how to videos on how to swallow swords, charm snakes, and breathe fire. I do not recommend trying these at home either.

Personally, I didn't know anyone with this disease before I was diagnosed. But it seems everyone knows a guy who knows a guy. Just because your mailman's brother-in-law's baby's momma's aunt has MS and she "cured" it by riding horses does not mean this will work for me. This same line of thinking goes along the same lines as telling me about your cousin's momma's uncle Stan who died because he had MS. This doesn't make me feel better! How the hell is this supposed to make me feel better?

"It could always be worse". Yes, this is very true. It could always be worse, but that doesn't make it suck any less. The thought of it being worse does not shine a light on today's sad truth. As one of the 10% of MSers who are unlucky enough to receive a PPMS Diagnosis, I know it could be worse. I know that I have a whole lifetime of getting worse to look forward to. There is no "up-side" to this. It's not going to get better, it is going to continue to progress and the only thing I can do is try to slow it down and hope for the best.

At least you aren't in a wheelchair yet. Yes, and being your father's son, I guess I can say at least you aren't bald yet. Maybe you should try some of those growth hormones now, I saw this video about it on Youtube. Yup, it has about the same effect, except you get to be offended and I don't.

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.