Saturday, July 25, 2009

My First Year with Multiple Sclerosis

Well, in a matter of days it will have been a full year since I stood up, dizzy, to find my left leg didn't want to work.  Which, of course, we now know was the beginning of my first full-blown clinical exacerbation, eventually leading to my MS diagnosis.

I find myself rather reflective lately, and admittedly, a little sad.  I was talking to mom about a water aerobic class at our local YMCA this morning that I was interested in taking while the kids are at school, and during the conversation the inevitable "how are you feeling?" question arose.  Truth is, I've been feeling pretty crappy lately.  Further into the conversation about MS, I said "Mom, whether we all want to say it out loud or not, I've progressed during this year".  She agreed "I know you have, I see it".

And really in a nutshell, that is it.  I have progressed in this disease in the last year.  My left arm and had are considerably weaker (and useless) than they were a year ago.  A year ago, the left side of my face didn't constantly feel like it was tingling and sunburned.  A year ago, numbers and detailed directions didn't totally confuse my brain.  A year ago, Multiple Sclerosis didn't have a firm grip on my life.

Likewise, a year ago I wasn't taking handfuls of pills every morning and night to ease pain and be more functional.  Heck, I didn't take any prescriptions at all.  Of course, this post wouldn't be complete without mention of my infamous, dreaded daily Copaxone injections.  Last night I was doing my shot, and per usual it left a massive red itchy welt on my arm.  Morgan cringed and looked away as I about to pierce my skin with the needle.  She hates needles, and can't even watch while her own blood is drawn.  As I was putting the cap back on the syringe afterward, she commented "I could never do that" in reference to my daily shots.  I shrugged, and rather matter-of-factly replied "You could if you didn't have a choice, I never thought I could either and now I do".  And really, that says it all.  I never thought I could stick a needle in my own flesh.  I had hated and feared needles since I was a little girl having my appendix removed.  Now?  They don't even phase me.  They are a part of my daily life, just like brushing my teeth or combing my hair.  

This first year of "officially" having MS (I say that in quotes, as we now know I had it mildly for years before finally diagnosed) has been trying to say the least.  My life has changed drastically, as has the lives of my family.  I have friends who've had MS for years, and they assure me the first year is always the hardest.  I can only hope they're right.  

There is a plus side I've discovered this last year.  I have an appreciation for my life, and those I love in it, that I didn't have before MS entered my life.  I also realize more now than ever how much I am loved, as so many of my family have gathered around me to support me and simply "be there" for me.  I guess even with something as awful as MS, there's still a silver lining around the black cloud.  For these things, and especially my family, I am so eternally grateful.

Until next time, be well all :)


Monday, July 6, 2009

The Ongoing Insurance Battle

Eh, it's been a trying couple of weeks. The good news is, I was able to come out of my recent flare without falling into another full-blown relapse. For that, I am so incredibly thankful. My left arm and hand, and side of my face, seem to be a bit worse than they were though. But, it's to be expected I suppose that things will progress, relapse or not.

Now, my latest true headache is fighting with my idiot insurance company... again. My doctor prescribed Ritalin at my last visit to help both fatigue and cognitive issues. And once again, my insurance company seems to think it knows me, and what is best for me, more than my neurologist. Yup, they have denied the claim. The want my doctor to prescribe a different medication. I am furious. I do not, for the life of me, understand how an insurance company can 'suggest' anything in regards to my care. They don't know me, they've never seen me, and know very little about me or my condition. Yet they are essentially dictating my care, no doubt based on the almighty dollar.

Which brings up another related point- Obama's universal health care reform. So many under-informed people think this will be a good thing. But, I challenge you to do the research for yourself on this issue, and read a lot deeper than the scripted publicity clips that are meant to bolster support and profess it's greatness. The truth of the matter is, if this goes through, the government will be the one deciding whether you are worth 'saving' or treating. He has openly said, that a big part of the plan is for the government to cut down on "frivolous and unnecessary spending". But just like my battle with the insurance company, who is the government to decide what is necessary and what is not for a person? The sad fact of the matter is, if Obama's plans for health care go into effect, the elderly and chronically/terminally ill will suffer greatly.

Why do you ask? Let me give you an example. Say someone develops a form of cancer with an 80% mortality rate. Under Obama's government run health plan, they would then take a look at the situation, and based on statistics likely decide it wouldn't be 'worth the money' to spend tens of thousands to treat that person's cancer. The reason? Odds are with the high mortality rate, they won't beat it anyway. Even though there IS a chance the person could beat it. Or say an elderly woman with many existing health conditions develops Lupus. They could then opt not to pay for treating the Lupus because it's likely she won't live more than 5 more years anyway and they're already spending thousands monthly treating her other conditions. Or, say someone like me with Multiple Sclerosis moves into an aggressive, progressive form of the disease. The disease ravages the person's body, leaving them curled and bedridden, unable to even sit up or speak. Then, a costly cure comes out. They could then opt not to spend the hundred of thousands on the cure for that MS patient because the disease has already progressed so far and they'd likely still be disabled anyway. Even though the cure would keep MS from taking their life entirely.

The bottom line is, Obama's government run universal health plan is based on statistics, not the well-being of the American people. Your health care, everyone's health care, will be determined based on percentages and dollar values. And if you think fighting private insurance companies now is hard? Just wait til Uncle Sam is the one holding all the cards. At least now, we do have some recourse to fight for our right for treatment. If the government is the final authority in our health decisions, the days of fighting insurance companies will become blissful memories, because at least then we had a chance to fight.

So I leave you with this thought... what dollar value would you put on your life, and the lives of those that you love? Are you ready to see what government's assessed value of your health is?

Be Well All,