Thoughts from the sick bed.

Last week was MS Awareness Week. And my MS wanted me to be Aware that it was still around.

It’s like I get complacent. I live life knowing I have it, but not consciously thinking about it most of the time. I don’t know if that’s complacency as much as it is just living life.  If I live in constant fear of this disease, then how is that actually living at all?  I usually don’t think about it until I have some odd symptom. Like when I get excessive fatigue or numbness in my leg or blurred vision or eye pain or any number of other crazy anomalies that might or might not be MS. Then I’m reminded that this disease is alive and well in my body.

And I hate it.

In case you were wondering, here’s a dumbed-down explanation of what MS actually is and how it works. MS is an auto-immune disorder of the Central Nervous System (CNS) which is composed of the brain and spinal cord. So basically what happens is my body starts attacking itself within the CNS. Outside the CNS, my immune system works properly. But inside that blood-brain barrier, it doesn’t.

So what happens is sometimes the thin covering over the nerves, called the myelin sheath, is looked at as a foreign invader. As such, my immune system kicks in and begins attacking this protective nerve coating. As it eats through the layer and into the nerve, it causes inflammation, damages the nerve and ultimately forms scar tissue (sclerosis) which can lead to a blocked nerve pathway. The result is multiple lesions of scar tissue on the brain and spinal cord. Wherever this scar tissue is, there is a loss of the ability for the nerve to function properly and the signals don’t fire correctly or find a different, often longer path. The disease is first identified by MRI where lesions are noticed. The diagnosis is confirmed after a litany of tests are performed. I won’t get into all that, but know that it’s not fun.

I don’t know how many lesions I have. I do know that on my second MRI, about two or three years ago, I had no new lesions. So the Copaxone was working. At least that’s the hope. I haven’t had an MRI in a few years, so I couldn’t tell you how many I have and if there are signs of new ones. But I digress. Back to MS for Dummies. 🙂

When a nerve gets inflamed, it results in what is experienced on the outside as an exacerbation or flare-up. (But not always. There’s really no telling how much disease activity is taking place silently.) So for example, if the speech area of my brain were effected, it may result in slurred or stuttered speech. Or if the optic nerve is experiencing inflammation, then it can result in altered vision or pain with loss of vision. Which is what I experienced last week. The goal of steroid treatment is to help reduce the inflammation and shorten the length and severity of an attack and hopefully minimize the damage caused.

Since it attacks the brain and spinal cord, which controls your ENTIRE body, then anything that goes wrong could be MS. Or it could be completely unrelated. Which creates a great deal of frustration sometimes. Most times. That’s why you may hear me say “it might be my MS” when referring to some issue I’m having. Because I just don’t know.

Over time, I’ve managed to discern between MS related issues and not. And when I don’t know, I email my neurologist and we chat about it. Chances are good that if it’s something to do with sensory issues, numbness, pain, tingling, etc. then it’s probably MS related.  And so far in my experience, the general course of action is no action at all. Or treat the symptom. Vertigo? Treat with Meclizine. Trigeminal or Occipital Neuralgia? Treat with seizure meds. Numbness? Wait it out. Urination problems? Treat with one of those meds that keep you from wetting your pants. Or wear Depends. Or both. Fatigue? Sleep.

And try not to stress out. Stress and lack of sleep can trigger exacerbations. Which is what got me to that point two weeks ago. We took a trip. A very quick trip to West Texas. And while it was great to get away and see family, I stressed too much. I was stressed before our trip about packing and airport security and wondering how E would do on the plane.  I stressed on our trip because E had a hard time being out of his routine and sleeping in a strange bed in a strange house. I didn’t sleep well before, during or after our trip. And I was exhausted and stressed when we got home. Just decompressing and trying to get E back in his routine at home.  All that stress combined over a couple of weeks was just too much for me. That’s my theory anyway.

But I can’t stop living my life. I can’t not take trips because I might have a flare-up. That’s just absurd.

So I will be a good patient and take my injection like a big girl. Even though I hate it. Because at the end of the day, I do better when I’m on my meds. So it’s worth the aggravation of a daily injection. Now the question is will my new insurance cover it and if so, how much will it cost. When I started the medication in 2005, my insurance covered it and I only had a $40 copay for a 90-day supply. This was huge for me because at the time, the actual cost of the medication for a 90-day supply was $4,000. Fast-forward five years and the cost has doubled. The last shipment I received showed a cost of $8,000 for the same amount of medication. When I had a $3,000 deductible last year, everything was paid at 100% after I met that deductible. Which I met by this time last year with my gallbladder issues. But with M’s new job, comes new insurance. And our new insurance requires us to pay 20%. 20% of most meds is a pretty good deal. But I can’t afford 20% of $8,000.  So I don’t know what I’m going to do about that. Guess I’ll worry about it when it becomes an issue. Right now, I have about 7 months worth of stock in the fridge. I’ll use it until it’s gone. And hopefully before then, I’ll have an answer. Or $1,600. We’ll see. But I refuse to stress about it. Because we know where that road leads.

I will take steps to reduce stress and get more sleep and live my life. Routine is important. Staying home with Eli is important. Being involved in my church and going to the park and singing on Sunday’s and going to small group and paying bills and going grocery shopping and cleaning house and doing laundry, are all important. And while mundane, they are routine. And routine helps me manage stress.

And doing these things means I’m living life. As crazy as that sounds. But the last five days, I didn’t do these things. I was a sloth. I simply existed. Because I didn’t have the physical ability to do these things.

What it boils down to is that MS is very personal. It effects everyone differently. Some people experience severe pain and loss of mobility. Some experience cognitive dysfunction. Some experience difficulty speaking, just finding the right words. I’ve been lucky so far. My disease course has been slow and fairly mild. I hope it stays this way. That’s my prayer anyway.

So if you’re still with me, I applaud you. Thanks for slogging through that explanation. I hope I’ve helped you understand a little bit better what MS is. How it works. And why, for all intents and purposes, I don’t look sick.

As part of MS Awareness Week last week, the National MS Society was encouraging folks to write in 60 characters or less, what MS = to them. One person wrote the following, and it made me cry:

MS = Wife and Mother, Destroyed.

I pray that MS does not equal that for me. I can not let this disease destroy me. Or my ability to mother. Or be a wife. Maybe it won’t be exactly what I want it to be, but I can’t control that anyway. So after thinking on it all week, here’s what I’ve come up with:

MS = Uncertainty.

MS = Knowing and listening to my body.

MS = Setting boundaries.

MS = Saying No sometimes.

MS = Dreams changed but not destroyed.

MS = Life well lived.

MS = Reminder of mortality.

MS = Wife and Mother, Anyway.

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This entry was posted in Health, life, Multiple Sclerosis. Bookmark the permalink.

2 Responses to Thoughts from the sick bed.

  1. Carol Selby says:

    Well said, as always.

  2. jhintze says:

    I stuck it out and read the whole thing. And I don’t like it. And I don’t like that you have it, and that’s that. When do you want to hang out again? You and Eli can come over pretty much any morning and join in our insanity.

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