Sunday, August 30, 2009

Choices

Well, I am feeling better FINALLY. It's only in the last couple days I can feel my face again, for the first time in weeks. I'm fatigued (yeah steroids wore off) but a bit better than I normally am. I feel as though I'm cognitively a bit better as well, and that's a biggie for me. My left arm and hand are still really weak, and having leg cramping and weakness in both legs, but overall I'd say I've improved. I just overall feel better.

Which, leads me into this post. My neurologist has decided to switch me from Copaxone to Rebiff, because obviously the Copaxone just isn't working for me. Rebif has considerably more side effects than the Copaxone, namely flu like symptoms from the injections. I'm currently waiting for the insurance company to get through all their lovely red tape in order for me to change my meds. In the meantime, I didn't refill my Copaxone prescription for two reasons. First, it's not working so why bother? And second, I really wanted to see how I feel off it.

I have been off all DMD's (disease modifying drugs) for a little over two weeks now. After my steroid infusion, I was good for all of maybe 3 days and my body went right back to hell. It was extremely disheartening. Yet I stop the Copaxone, and I get noticably better. Even my husband has noticed an improvement, not only in my physical state but psychological. I don't think it's a coincidence that I am feeling better after stopping the Copaxone.

I know of many people with RRMS that opt not to take any DMD's. The sad fact is, all DMD's only slow the disease's progession about 30% at best. Of course, that's if they work at all. Likewise, all DMD's have potential side effects, none of them pleasant. Many with MS just find they simply aren't worth it. I mean, if you think about it in terms of statistics, the odds are against them making a significant improvement in your life. In fact, your odds are much greater that due to their side effects your quality of life will decrease when taking them. So, I find myself at a very hard crossroads, a choice that could potentially effect my life long term. Is it worth the potential of slowing the progression of this disease by 30%, if in taking the drugs that do so it seriously decreases the quality of life I have now?

I'm not sure of the answer to that yet. In fact, I'm really struggling with it. I think for now, I will start the Rebiff and see what happens. But if say after six months on it, I find I feel awful constantly again, I will once again go off all DMD's and see if I improve. If I do...well then... much to my doctor's disapproval I may go off all DMD's altogether. I really hope I see an improvement with the Rebiff, but being honest, hoping and expecting are not the same thing. I fear in my not so distance future, I will face the choice of battling this disease without the standard meds used to fight it, or with them at the cost of my daily quality of life.

Oh one final note: I know many others with MS read this. I'd love your input on your experiences with the different DMD's out there, and the input of others who may have decided not to take them at all. Through all my journey with MS, I have found consistantly the best advice I get isn't from doctors, but from others battling this disease just like me :)

Be Well All,
Mis

Sunday, August 16, 2009

What is 'normal'?

What is 'normal'? I throw that word around a lot, I think we all do. We constantly compare ourselves to those in the world around us on the basis of 'normal'. Do we look normal? Act normal? Is this behavior normal? But what really IS this normal we are all trying to achieve and measure up against?

I find myself debating that this morning. Today is day two post steroid infusion. I slept last night, though a rather fitful restless sleep. I feel pretty decent today overall, though having just choked down my taper dose of oral steroids has me a little jittery per usual. I think I'm watching myself, my body, entirely too closely again. I can't help it though- I keep looking for signs of hope. But what am I hoping for? Am I hoping for this 'normal' we all aspire to? Sadly... yeah I think I am. For as good as I feel today overall, I'm a little sad, because I don't feel what I perceive as 'normal'. Maybe it was wishful thinking, maybe it's because I AM an "MS Noob" being only a little year into my diagnosis. Whatever the case, I was really looking at this latest Solu-Medrol infusion as a silver bullet, even if only a temporary one. Last time, I did feel what I perceive as normal afterward. For me, the word normal means very simply to feel like I don't have MS. And as I sit here now, with my left arm feeling weak and my hand giving me issues typing, my face still tingly and burning, I know this is not the normal I am searching and praying for. I still feel like I have MS.

What I am realizing, and continuing to learn over and over it seems, is that my 'normal' will never be again the measuring stick most healthy people aspire to. In fact, I am realizing my normal doesn't exist. There is no normal, can be no normal, when your body changes so greatly from day to day depending on how angry the monster called MS lurking within it is.

I took a break mid-post and did some running around with my son. I find if I get out before the heat of the day is bad, I do pretty well. As most know, Multiple Sclerosis and heat do not mix. I call it "insta-weakies", because the minute I start to heat up it's like every muscle in my body turns to jell-o instantly. So, Joshua and I ran and picked up some scripts, got him a donut and me some coffee, went to Kroger, then ran by my mom and grandma's house for a visit. My mom and her husband moved in with my grandma a couple months back. I have to tell you (and yes, they do read this so I'm sure they'll laugh), my mom and grandma together are quite the comical pair. They bicker and pick on each other endlessly, then they both look at me to take their side against the other. I just laugh at them. They love each other very much, but man those two are like 'The Odd Couple'. Two grown women, both set in their ways, and both sure they are the one that is always right. And I am no fool- I know as sure as I know my name, if my mom and I lived together, we'd be the same way. One thing they don't quabble over is me- they both worry about me. Probably too much. Which, as a mother, I understand. If my daughter was in my situation, I'd worry endlessly too. So as I sat drinking my coffee with my mom and grandma, the usual "how are you feeling?" came up. I told them as I posted here, I was a little down that I didn't feel 'normal' after this infusion.

Then my grandma and I got talking further. And it hit me: she doesn't know 'normal' anymore either. God Bless her, she's in her 80's, and the feistiest most awesome lady you'll ever want to meet. But she is old, and as we all know with age comes bodily deterioration. As I sat there trading woes with my grandma, I guess I realized what I had already been contemplating. Normal isn't universal, and it varies greatly from person to person. There is NO 'normal'.

While I know this revaluation to be true, changing my mindset to stop myself from searching from the elusive, mythical state of normal will take some work. So for now, I will find what MY own personal normal is, and strive for simply that. As I do so, I will remind myself that just as there are many out there who's normal is a lot better and nicer than mine, there are also many in this world that will look at my own normal with envy because theirs is so much worse.

As the old cliche goes "Why be normal?" :)

Be well all!
-Mis

Saturday, August 15, 2009

Another Steroid Infusion

Well, I swore I wouldn't do this again. Yet here I am, up with insomnia after day three of another Solu-Medrol infusion. For those of you going "what the heck is that", the short version is it's a very high dose of steroids, 1000ML a day, administered via IV for three days in a row. For those like myself with Multiple Sclerosis, sometimes it's a necessary evil to tame the monster lurking inside of us. Don't misunderstand me, for me and many others, it does work. In my case, it gives me precious, cherished time feeling 'normal' that I never get except after an infusion. Today I went to the grocery store for the first time in months. I walked at surprisingly brisk pace, I wasn't unbalanced, I wasn't fatigued, heck I enjoyed it. My daughter Morgan (who's 14 years old) says I act like I'm on speed or the energizer bunny after an infusion. LOL. What's sad is? This is how I used to be; this is the real me that now normally spends her days trapped inside a malfunctioning body. It's been so long that Morgan forgets this was how I was when she was little. I was a single mom with her for many years, and we were always on the go. Taking road trips, day outings, shopping. Those days seem like a past life to us both now I fear. Even sadder, that's a 'me' my son Joshua (who's 6 years old) has never and will never know. Except...for these precious rare times after a steroid infusion.

And those are the two reasons I caved in and had another one over the last three days- my children. Yes, I was relapsing again and badly. Yes, I needed it to pull me out. But when my doctor said he wanted to put me on one again, I won't lie. My first thought was "oh, I'll get a couple glorious weeks of being normal with my kids again". And I immediately agreed.

So here I am, well after 3am and wide awake due to the horrible insomnia that comes with the infusions. I can go literally days with little to no sleep for the first week during and after one. That, is the side effect I simply despise. Especially since I know my body needs the sleep badly, and I will eventually crash very hard. There is also the very real risk of becoming diabetic from them, as well as your thyroid shutting down. Not to mention organ damage. For the time you have such an insanely high amount of steroids in your system, your body is no longer in control. The steroids have full control over your functions. My point? The choice to use this therapy to tame a relapse is not one that should be entered into lightly and without a lot self education on the risks. But for me, the benefits far outweigh the risks. So here I am. Again.

I have to say, it's been a really really rough year. After my first infusion, I was totally MS symptom free for a little while. This time is a little disheartening, as I am not. Yes, I am TONS better, but my left arm and hand are still weak and tingly, and I've only regained maybe 70% of the feeling in the left side of my face. I suppose it's to be expected. My cognitive issues remain as well, maybe a slight improvement in processing time and a little better short term memory. As I stated in my last post, I have progressed. It's just difficult to accept the fact I have reached the point some things may never, ever be normal again as long as I live. Even after an infusion- my last and only hope for a rare reminder of what normal even remotely feels like.

But, I choose to be thankful it's worked at all, and has given me this brief window of time to really enjoy getting out and doing things. Soon enough I will slow down again, and find myself unbalanced. I will get fatigued just from the walk from my car to the store, and grocery shopping will be fond memory. After my first relapse, I found after the steroids wore off my baseline had changed for the worse, I expect the same to happen this time as well. A relapse takes it toll on you without doubt, and very few of us with MS come out of them without some lasting effect that we didn't have before we slipped into them. So until I find out what that will be for me...and I go back to being trapped in my failing body... I will enjoy this precious, blissful time I have free from major disability. An all too brief breaking free of the monster that lurks inside of me. For that, insomnia is a small price to pay :)

Be well all, and may God bless you.
Mis