I have an appointment for my 1st infusion the new MS drug. The date is August 10. I referred to it as the new MS drug because my voice software can't do the name of it correctly. It is very tedious to correct things that I'm dictating. Sometimes I just get so tired of fighting it that I just leave the mistake. My wife is pretty happy about it and she has done a lot to coordinate my primary care physician and the neurologist. When we go to one you tell them to send the records to the other one but somehow that gets forgotten. Without my wife expediting things I probably still be waiting this time next year. I want to discuss the effect emotionally on me about this new drug because it is not what I expected.
One thing I can say is that my mother was from Missouri, the show me state. I've always had this attitude and mindset of "show me the results". We started up this process for the new drug quite a while ago. I have had a lot of time to think about it and I think that is been difficult for me. Since I was diagnosed I have read and been told over and over again there was no hope of any medical solution in the works for my type of MS. I have primary progressive and I came to terms with that a few years back. I learned to accept what it is because "it is what it is" and everyone's is different. Now recently I've been faced with the prospect of a medical treatment that may or may not prove effective. Only way to find out is go through it and see.
So I fought a mental and spiritual battle for quite a while now thinking about this new drug and unfortunately reading too much about it. I don't want to get my hopes up because I accepted what I have. Now I'm fighting the battle of dealing with the "what if this, but if that" scenarios. He mostly I've been all over the map. I'm afraid to hope but they keeps creeping in. Will I get the use of my right hand back so I can drive my own chair, feed myself, scratch my images, throw the ball for the dog, scratch the kitty ears so she likes me again and be less of a burden on my wife. Then I wonder what if it works even better than I can get out of my chair on my own again. That I wonder what if it doesn't work at all and all this rigmarole has been for nothing. That I wonder will the drug infusion make me ill. Not sure that part really bothers me much because at this point I'm willing to try anything. Other worries are, what about infusion number 2 and the follow up infusion is not comped to me by manufacturer as the 1st ones are. But I wonder why does an insurance cover it and will they in the future. The cost is ridiculous and if we have to pay for it it won't be possible.
So I really struggled for the last couple of weeks because I keep looking at the circumstances I'm surrounded with and burdened with along with my wife and kids. I have not been praying and reading the Bible very much and have suffered spiritually because of this. When I am spiritually close the Lord Jesus all these trials I'm going through seem like "light affliction but for a moment". Last couple weeks I've been trudging through this morass on my own and is not so easy to get back to trusting the Lord. I was diagnosed in 2009 and never expected anything to be approved medically for my type of MS in my lifetime. This new one was a surprise to me and I wish I could be more optimistic but of course I'm afraid of hoping to much. I've always found that being optimistic and hoping lead to "crash and burn's".
Please pray for me that I can handle these ups and downs a little better than I have been. Thank you so much in advance!
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