This weekend I tried to rest, but didn’t really happen as much as it should have. My left eye is still bothering me.. the “light brown rain cloud” has decended a bit further down into my vision in the left eye, and appears to now be “raining” as there are now misc light brown blurry spots below the original line. On the bright side, it doesn’t ache as bad as it had. I wore an eye patch off an on since Friday to kinda help, but at some point yesterday I set it down and can’t seem to find it. (Imagine that.. lol) We take for granted how much easier it is to look for things with two good eyes.. lol. 🙂 Least my right eye is unscathed, but I’ve given up driving for the time being.. 😦 Maybe its a good thing that Deon likes to drive. I guess on the bright side it gets him out of the house more often.. 🙂
My youngest son was very cute on Friday. When I came home for lunch, he was all worried and asked if anyone had made fun of me at work. I told him no, that no one had, and he said “Good! because its not nice to make fun of people when they are having problems.” It was very cute. I’m sure I am quite the sight when I do wear it though.. Its probably comical to see someone with an eye patch wearing glasses.. lol.. just saying.. ^^
Upon instruction I obliged and scheduled an MRI for Wednesday the 30th. We had just paid off the first one in March of this year.. 😦 Hopefully this time won’t take me three years. Different hospital, hopefully it will be different. This time with my insurance there is a deductible, and a copay, instead of a deductible and a percentage, so it should be about half the amount it was last time if I counted right. Last time it was around $4000.00, this time closer to $2000.00 hopefully. Weird to think that our trip to Disneyland cost us close to what we will spend on this MRI… its a weird world. Interestingly enough, it is almost roughly the same amount as a month’s worth of Copaxone costs too.. MS is not a cheap disease. I’m fortunate that I’m not really in that bad of shape overall, It could be far worse.
If there is anything constant, it seems that there is really no constant when it comes to MS. That thought while scary, almost makes me breathe easier in that it allows for things to change. Even if they get worse for a time being, there is always the possibility of them getting improving from time to time too. Its helpful to remember that “This too shall pass” and knowing from experience that it is a true statement, and not just something that someone said to make me feel better one time.
Its because of that, that I seriously second guess decisions alot. Even the decision to go ahead and get another MRI. I debate the “necessity” of it. I guess if I was feeling totally disabled by the disease, maybe I’d feel different. I kinda feel only periodically partially disabled by it. For the most part if I follow “the rules” I’m ok. Just seems like a very expensive photo shoot, and not even from my best side.. 🙂
The thing is that even after they see this MRI, it doesn’t mean its going to tell them how to make things better. Worse yet, if they overreact to what it does show and want to start me on more medicines and programs than I can afford, all when a little bit of extra rest would have done the trick. I worry about the snowball effect more than anything. It starts off as one thing, but then quickly “requires” more tests, or monitoring, which greatly adds to costs and stress levels, which I think is a huge culprit in itself. I know its all well meaning, but the patient is the one that has to live with the repercussions, and sometimes I think over-analyzing causes more problems than it helps.
I’ll give them this MRI, but I don’t feel like I’m in that bad shape other than a few temporary things here and there. I need to remember that, and stay strong as to not let myself be guilt-ed into any more than what is actually “needed”.
Its not that we are in danger of it right now, but my biggest fear is that I’m going to cost my family our home at some point because of the MS. We worked so hard, and Habitat even was so wonderful about changing the plan a bit for us so that if the need arose, I’d have an easier time getting around my house.. even in a wheelchair. We love it so much, and the kids are doing really well there. It would break my heart to disrupt there lives when I feel like they are thriving there. Its been such a blessing.
Its hard to be a parent sometimes and know that my decisions can make or break our current reality. There is no safety net. There is no one to rely on I have to stay well enough to continue to work, fend off extra costs, so that my focus can be on taking care of my family. I think its a hard balance to strike sometimes. Its hard to know what the right decision is, knowing when you should oblige a little more, and when you should be a bit more stubborn.