Thursday, May 10, 2012

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.

Tuesday, March 6, 2012


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.

Sunday, February 19, 2012

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.