MEDICATION: Meant to "heal" me....but might be making me "feel" worse.....

I know I haven't written anything in FOREVER.  To be honest, life just got in the way.  Kids, family, projects, my health....everything.  But as soon as I opened the mail this evening, I knew I needed to post something about this....and a little Facebook rant was just not enough.

Every month I get this lovely statement in the mail from my Health Insurance company showing how much was paid out by my primary and secondary insurances for my prescriptions each month.......

Side Note:  

I am absolutely not some pill happy person.  I HATE taking medication.  And what's worse, none of mine are easy little pills....they're all injections. Needles. God awful jabbing little things that I have to stick into my hips, tummy, and thighs.  Hoping I don't hit a vein and bleed like a stuck pig or swell up like crazy....or get a bruise like someone has beaten me. I have had so many people ask me "Well, you take xyz for fatigue right?" or "you know about xyz for this symptom right?"  I don't take ANYTHING but my one 3x weekly injection of my Interferon that is hopefully supposedly for disease management....to help prevent my relapses from occurring as frequently, and to help them not be as severe when they do occur.  My problem with it is, everyone's MS takes a different course. No two people have the same roller-coaster of symptoms.  So who is to say that the injection I am taking is giving me less relapses?  If I had 5 in a year....I think that's a lot. Does that mean I would have had 10 without the injection? Or does it mean the injection isn't doing sh*t?  I don't know.

My neurologist started me on a new injection that is made to be taken for 5 days straight every three months.  It's called: Acthar Gel.  This is a highly purified preparation of adrenocorticotropic hormone (ACTH) in a gel that is designed to provide extended release of the ACTH following injection. ACTH stimulates the adrenal cortex gland to secrete cortisol, corticosterone, and aldosterone.  It's originally known for helping small children with epilepsy.  

End Side Note....

Ok, so I open the statement.  Usually it shows one line item...my Rebif. Amounting to somewhere between $5,000 and $8,000 per month.  When I first read this last year, I wanted to barf.  That was just ridiculous.  Who could ever pay that without insurance?

Anyways, this month there is a second line item.  My first round of Acthar.  If I thought I was going to be sick for the Rebif....this brought me into a whole new level of nausea.  The total cost billed to insurance for my Acthar treatment was $34,884.85.   WHAT??!!  You have got to be kidding me.  That is more than $34,000 too much.   I mean seriously.  Wtf are we as humans allowing to go on here?  A medication---not a life saving one---just hopefully a semi helpful one---is costing as much as an average YEARLY SALARY!?  

How has no one stopped this? How is it that people just sit back and let this happen?  Sure, I am absolutely thankful to have insurance so that my out of pocket cost really is minimal....but WTF! I am sitting here torn between my morals and my health.  No person should ever have to be put in that spot.  EVER.

Almost ever fiber of my being wants me to never take that medication again. I want to message the drug company and tell them exactly where I think they can shove it and how absolutely astronomically insane this is.  I am supposed to take this medication 4 times a year.  That amounts to just under $140,000 annually.  Are  you kidding?? I bet a lot of the 1% couldn't even afford to pay for that!  It is beyond disgusting.  In fact, I am stuck, I can't find a gross enough word for how that makes me feel.

And then I pause, and I think about my girls.  I'm 29 and I have two young amazing little creatures to think about. They need me. And they need me to be as functioning as I can be.  I have days as it is where it is hard enough for me to get anything done....and as I sit here feeling completely fatigued and crappy for the last few days....and having my optic neuritis acting up in my right eye again....I'm scared.  I'm scared that these horrifically overpriced prescriptions are not actually doing anything.  I'm scared that if they are doing anything, it just isn't enough.  I'm scared of what "worse" might look like if I stop taking them.  I'm scared what this world is going to like like when my girls are 29. 

 How has it gotten this bad?  How are there not more people in an outrage about things like this?  How is it there is not actually a system out there to keep things like this from happening?  How have we all become so greedy?  How is it fair that someone who needs a medication to continue maintaining some semblance of good health should be made to feel like a slimy jerk for taking it?  Or worse, not have the option of taking it if decent insurance isn't an option? Has everyone just lost any sense of morals?  How do the actual greedy assholes sleep at night knowing they are making people choose between their health and other important things....like feeding their families, keeping a roof over their heads, and preserving some amount of morality.

I'm not sure what I am going to do about my situation.  I could go off on another tangent about how insane it is that there isn't more research going into natural things like medical marijuana to treat diseases like MS...or how even though you can get prescriptions for it in some states, insurance doesn't cover it.  Why would we ever want to save thousands of thousands of dollars on something natural and not chemical based.....

But alas, I digress... that will be for another day.  For now, I will sit here and contemplate.  I will contemplate about how much my health is actually worth to me.  And how much I think it should be worth to anyone else.  Is the medication worth it to me? Is it doing enough for me to justify the filth it leaves me feeling?  I feel badly for anyone else also faced with this dilemma.  But I feel worse for anyone who should be seeing this but doesn't. Anyone who doesn't feel obligated to speak out about this one atrocity taking place in our daily lives.   Anyone who ignores the fact that maintaining our health.....that for many people is probably only broken due to our completely toxic environment we live in (mainly including the crap we feed our faces on a daily basis)....is literally at such an impossible price.  How much money could be saved if we just found a way to right the wrongs from the get-go? Grow and eat actual REAL food.  Stop polluting our bodies with the toxins that are helping to breed the ever growing illnesses like MS.

I could go on forever about how so many of the things in our world today are making us so sick.  It makes me crazy.  Thinking about it makes me sicker.  Possibly quite literally....it adds such a high level of stress to me....and stress just makes MS worse.  I wish I was stronger, I wish I was someone who knew how to speak out to make a difference and make a change....I wish I knew something to do besides rant on my blog......