It’s a typical, hot July day in the Ozarks, 90 degrees and 61 percent humidity.
I spent the better part of the morning dealing with different medical accounts. The great majority of bills that I have are within the same hospital system but, within that system I currently have 5 separate accounts. As I have no insurance it is up to me to negotiate payment plans for each separate account. Everyone I talk to seems pleasant and genuinely wants to help but, it’s frustrating because there is a lot of time on hold waiting to talk to the person that makes the decisions.
It’s sometimes overwhelming as well because, if something miraculous happened and I was able to pay all of these bills tomorrow, a new batch would start to accumulate. I try to do the right thing and pay what I can. Dealing with M.S., for me, is a daily endeavor and sometimes, in the back of my mind the fact that, despite every effort, I will have a legacy of unpaid bills.
Ironically, this afternoon I got a call from my Beta nurse. The medication that I take for the M.S. is Betaseron. I take this by injection every other night. It is a situation where there are a lot of side effects at the outset and it’s a little complicated to get used to the procedure of mixing up the concoction and injecting yourself. So, they set you up with a nurse that calls from time to time to see how you are doing with it.
This medicine, by the way, is very expensive. Even without all of the other ongoing bills, there is no way I would be able to afford it. The actual manufacturer has a patient assistance program that sets up a co-pay situation according to income level.
Anyway, my nurse called to tell me that today it has been a year since I started on the drug. So, it is an anniversary of sorts. It’s kind of a no news is good news situation. The function of this medication is to try to stave off the M.S.; to keep it from getting worse. So, if I felt worse it would indicate that the medicine isn’t effective.
I don’t feel any worse today than I did a year ago. Sometimes I experience fatigue and that’s just part of the game. For me, the biggest issue has been a constant numbness and tingling in my hands. For a guitarist that is obviously a pertinent issue.
Now, before I was diagnosed with M.S. I had been through a long period of no guitar playing for fear of doing further damage. After the diagnosis, my Doctor told me to play as much as I wanted; that it might be good physical therapy.
When I initially picked up a guitar again, I had no dexterity. I was not able to play the simplest things. This was about the same time I started the medication. So, now after a year of fairly intense daily guitar playing I am able to do at least some of the things I used to. In other words in that area I have shown definite improvement.
Is this improvement due to seriously working at it on a daily basis or, because of the medication or, a combination of both? Well, the answer is that nobody really knows. My Neurologist at first said that any improvement was due to my work, not the medicine. The last time I saw him he said something to the effect of; “We don’t know how or why this stuff works; just that it does seem to work for some people”. He went on to tell me that he “thinks” the medication would not make my hands more dextrous but he couldn’t say that for 100 percent sure.
So, maybe the lesson is this; if something you’re doing is working or, even appears to be working, keep doing it.
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