It has been an interesting week to say the least.
Went to my Rheumy for my every 8 week exam. My fingers and toes are rebelling. 3 weeks without meds turned into three months of trying to get back to where I was and hoping it will work.
Before I went I tried to get my methotrexate filled. My friendly neighborhood pharmacy that CAN get the kind of inject-able methotrexate that has preservatives in it (WalMart says they don’t MAKE that kind… I should just buy twice as much for three times as many dollars and throw half of it away every week is the ONLY way I can get my meds. My doctor is MISINFORMED… yeah… so are a shit ton of pharmacies) can’t actually get any until at least the end of October. Maybe. Maybe not until sometime in November.
Next pharmacy… same story.
We were running around pharmacy to pharmacy trying to find anyone that had some in stock.
Is it fundamentally messed up that I was terrified that I wouldn’t be able to find any until another several weeks passed without its help?
Once upon a time I was just like everyone else. I could wake up in the morning and not take stock of what hurts and what is achey and stiff and sore. I could decide what I wanted to wear based on what I was in the mood to wear that day not what I figured I could get away with putting on. (I am STILL waiting for Stacy and Clinton to ride in on a white “Mustang” and teach me how to dress when I hurt and can’t wear jeans and button down shirts… and when I’m so freaking cold from the Raynauds that I look like a total dork in glovies and a hoody in June in Texas… and how to wear marvelous shoes with heels and pointy toes when my feet are puffy and fluffy and pissed off).
Once upon a time I didn’t have to think about not touching the handle on the doors and the elevator button and the H1N1 diagnosis that was officially positive three floors down (they don’t come upstairs… and I don’t go to their floor… but they DO leave the building on the first floor).
Once upon a time I didn’t have to worry about running all over three counties to try to find ONE store that had squirreled away enough methotrexate to get me through until the distributor and the manufacturer DECIDE to ship a little more. REALLY?
And in the middle of all of this, I find myself worrying about all of the other people like me (and there are a lot of people like me) who rely on having their tiny little bottles there when they need them… so they can pull that little bit of liquid gold into a needle and stick in into their stomach.
The kids who rely on this medicine for their futures. Methotrexate is the answer for lupus and RA and other conditions. It is the answer for them to stay healthy. Good grief… I can find some kind of warped logic in the fact that insurance companies fight paying for some meds. I took enough management classes to know that there are many factors that they put into their equations to decide what to pay for and what not to pay for. I don’t get why they will pay for big dollars and not small dollars, but it is them, not me. HOW do pharmaceutical companies, in good conscience, just… not plan? It isn’t like a huge flu season and there is a surprise pandemic. They know how much they ship every month. They can figure out statistically how many extras they tend to add every month… it isn’t rocket science… it is what it is.
I feel a little better knowing that I have a 60 day supply thanks to CVS last night. But what about the people who don’t know that they might not be able to get theirs. What happens to the people who can’t? I know they are out there. How can they get by…
I remember that feeling all to well with a medication. For me it happened when I was taking Enbrel. There was a shortage of it for a long spell as they had just started mass distribution (a long time ago) and couldn’t meet the demand they had sold (patients that were subscribed it). It was a nightmare to say the least. I kept getting mine as I was a registered user back then but my heart went out to those on the waiting list. It is not a good feeling is all I can say. Now let’s hope the metho kicks back in for you so you can wear those lovely shoes 🙂
=) I don’t wear the “lovely” shoes anyway. I’m not so much a heels kind of girl. It just really REALLY honks me off that “TLC’s What Not To Wear” never helps people with problems figure out how to dress themselves in a less elastic waist band and no buttons kind of way… how to fix your hair when you have a less than elegant time holding a hair brush (or better yet, when the MTX is causing you to have less hair and more forehead). I tend to get stuck on a crusade and run with it (“not girl toys and not boy toys just toys”, “people really don’t seem to remember that there are people in the world who are not able to do XYZ”, “epilepsy isn’t contagious” , “even hypochondriacs die of something, pay attention”). What Not To Wear always “helps” the guests with clothes and tells the world that elastic waist bands are evil… whatever… shows them how to buy fitted stuff… but…
And again… right now, I can USUALLY manage to do up buttons… even on my sometimes not quite so comfy jeans. But what about the people who can’t. There but for the grace of God and all of that… There are people in worse shape than I am (I can TOTALLY tell that by reading all of the posts on facebook groups… there are people who aren’t “old” and who have a lot of life left to totally live if they want to… and people don’t think about the fact that they might not be able to wear the marvelously professional or even some days presentable clothes (as defined by Stacy and Clinton). And it honks me off even worse because Clinton is supposed to be SUCH an RA advocate…