Tuesday, March 31, 2009

How things are

Well we're coming to the end of a really busy couple of weeks here. Morgan just finished her play "Seusical the Musical". I have to tell you, the kids did such an awesome job!! Morgan really worked her little butt off on the production, so I was so glad to see it went well. And yes, I admit, it does make have one of those 'proud momma' moments to see my daughter following in my footsteps and getting so active in the drama program at school. I know some of my best memories of being teenager were during theater productions and hanging out with that group of kids, I hope it will be for her too.

On a very sad note, today I am going to the memorial for Wayne's grandpa. He passed away this past Friday, March 27th. His grandpa was such a cool guy. I remember the very first family function I went to- before we were even married- it's his grandpa I spent most of my time sitting and talking to. He was 101st Airborne in WWII, and ironically was even from the same small town in northern Michigan that my family is from. His grandpa was wealth of interesting historic information and so incredibly interesting to just sit and listen to. Not to mention a very blunt, to the point, no beating around the bush type of guy. Which, of course, I loved about him. Eerily, he died 15 years and 1 day from the date his beloved wife in 1994. She died March 26, he died March 27. I personally find that a little more than ironic. I obviously never knew Wayne's grandma, but from the stories I hear her and his grandpa were so very much in love. For that reason, it makes his death just a little easier because I know he's finally reunited with his wife he's missed for long.

As for myself- I'm hanging in there. Now that I'm fully done with the steroids, fatigue is really kicking my ass once again. I can sleep 10-12 hours a night and still need a nap by mid afternoon. The worst part is, the more tired I get, the worse my brain fog gets. It's more than a little frustrating to say the least. I've also noticed a marked increase in pain, which has me a little worried. I currently have water on my left knee, which obviously isn't helping either, not to mention it's making navigating our steps somewhere next to impossible. I think the day is coming fast that living on the second floor is simply not going to be an option anymore, I only hope we can find the financial means to actually move and cover higher rent sometime soon.

I'm also having issues with my Copaxone injections. I've been on it for 3 months now, and up until recently I never had a problem. Now, I am getting bruises and lumps at the injection sites that last literally for weeks. The worst part of that is, the lumps itch and hurt to touch too. So for instance, right now I have two bruised lumped on each thigh, one from last week's injection and one from this week's injection. I also have bruised lumps on each arm from last week. Normally I skip my arms, but I was trying to lengthen the time before I did my legs again to give them more time to heal. Heh, little good that did, now I just have 6 bruised itchy sore lumps instead of 4. Why I'm suddenly having this issue after 3 months is beyond me, but it's definitely something I need to take up with my neurologist.

But, overall I am holding my own. I really think if I could just find a way to tame this damn fatigue I'd do so much better. I've been really resisting letting my doctor put me on yet another prescription, but I may have to resign myself that one for the fatigue may well be necessary. We'll see.

Be well all! :)
*hugs* Mis

Wednesday, March 18, 2009

Spring...

Well, here in Michigan spring has finally sprung. All the nasty snow mounds that look more like dirt from a long winter of road grime are finally gone, the winter jackets are left in the closet, and we've even opened the windows a few times. It's funny really. I look at this change in seasons, and I can't help but see paralells to my own life.

In so many ways, I feel like I'm in my 'spring' of this journey I'm on living with MS. This winter was really, really bad. And I'm not talking the frigid temps and snow, either. I'm talking about myself. After years of mystery illnesses, people even thinking I was a bit nuts, and finally being diagnosed with MS in October... I sunk. I didn't just sink a little and bob around, I mean I went down like the Titanic. I have spent the better part of the last 6 months in quite the depression, not to mention in a state of constant fear. Fear of the unknown, fear of my own body revolting against me, fear of losing all that I love and hold dear because of this nasty disease. Every morning, I'd wake up and do a sort of 'body inventory'. Can I see? Ok wiggle your toes... can I stand? How's the arm, think ya have any small motor skills today? Hmm... I think that's some nerve pain I'm already feeling in that damn right leg. Quick do math- what's 8+5? Is your brain foggy? Think ya can speak without sounding like an idiot?

This...was me. And of course, some part of my body inventory would always fail the test, and I'd curl right back up and think to myself "maybe tomorrow I'll feel normal". Guess what? This IS normal. The normal I once I knew so long ago simply doesn't exist anymore. It's gone. Buh-bye. I finally realized I am never, ever going to wake up and feel 'normal' by healthy standards again. This sunk me into an even deeper fear and depression. I thought my life was over.

Funny thing about life, sometimes we have to learn lessons the hard way. As most of you know, back in late February, I relapsed. Not to sound like a drama queen, but this wasn't a little flare I mean I really relapsed full-throttle. You're probably thinking right now "oh that's so awful". But you know what? It's not. That relapse really taught me something- it showed me just bad things could be, and made me realize how 'good' I was actually doing pre-relapse. It was truly an eye-opening experience. And just as my relapse finally ended- is when the long winter ended as well. So really in many ways, mother nature and I both came into our springs together this year.

I have to say, I am enjoying this spring like I haven't enjoyed a spring in years. I no longer do my body inventory every morning. I wake up each day and simply begin, and any symptoms I have that day will reveal themselves soon enough without me fretting over every single possible one. I see things, my life, so differently. It's not over- in fact there is so much left of it. I have the two most amazing children ever born. Some day they'll give the most amazing grandchildren. My life is far from over and I simply refuse to let another day pass me by while I withdraw into my own fears and depression. Yeah, I have MS, and it sucks big time. But oh well, whatcha gonna do? Let it beat me? I mean seriously, this ME we're talking about. My father once joked that since I was just a little girl, the quickest way to get me to do the exact opposite of what you want is tell me 'no' or that I 'can't' do something. Well guess what? MS isn't gonna tell me I can't either. I can...and I will.

So for the first time in probably years, I feel like 'me' again. I am getting out taking Josh to the park, going shopping with Morgan, laughing and playing with the kids. I mean, so what if I take longer at the cash register because my left hand doesn't want to work the zipper of my purse? People don't like the delay? Not my problem- they can wait til my brain and hand work things out. So what if I move a little slower when walking through the store? My daughter doesn't care at all- she's just glad to be shopping with me no matter what speed I move at. Or if I actually get a simple math problem wrong playing a game with Josh? He just thinks is great to beat mom! *laughs* He doesn't care it's because mom's brain is all foggy- he just wants to play with me. I guess what I'm trying to say is, those that love me, just want me. They don't care about anything else, or the condition I'm in, so long as they have me in theirs lives where I belong. Where I want to be.

And that is why I say this is the 'spring of my journey with MS'... because God did something really cool when he made our world. He made seasons. Winter can be so cold, and the world around us looks downright dead when we're in the depths of winter, but without fail just when we think the dreary frigid season will never end, spring arrives. And with spring, we are reminded just how full of life the world around is as things seem to be reborn right before our very eyes. Just like me, realizing how much life I still have left to live. I'm leaving all those fears and feelings of hopelessness in the winter and moving into the spring with fresh hopes for my life. The spring of my journey has come.

Be well all :)
Mis

Wednesday, March 4, 2009

How much, is too much?

So... I finally slept for a whopping 6 hours straight last night. First time I've slept more than 3 hours a night since I started the steroids. I am just in a haze today. I am so tired, yet thanks to the fact I just took my daily 'taper dose' of steroids I'm all shaky and wired at the same time.

It's a catch-22, really. I mean, yes the steroids stopped the relapse dead in it's tracks. In that regard, what a life saver. I was miserable. Not to mention I need all the help saving what brain and nerve function I can get. But I have to be honest, never in my entire life have I DREADED taking a med like I dread taking these steroids every morning. I just... hate the way they make me feel, and I know they are so hard on my system too. This morning I sat there with the bottle in my hand just staring at it, putting it off taking it, for a good 20 minutes.

After a loud sigh and once again washing them down, I got up to return them to what used to be my jewelry box that has now become my own personal pharmacy stand. And I stood there staring yet again, and I thought "My God, my entire system is regulated by drugs". Right now, more than ever.

Here is what my day consists of at the moment: I wake up, and I take a Zantac (150mg, no less) to keep all the pills from eating away at my tummy. Half hour later, I take a Neurontin for nerve pain, a Baclofen for muscle spasticity, Chantix to quit smoking, and of course the steroids. By then my Copaxone is about room temp, so I then give myself my daily shot to keep the MS under something remotely resembling control. Let my tummy calm...and around lunch time I take B12, Vitamin D, Omega 3, and Inosine. That's the supplimental round of pills. Then I get a break, don't have to take anything else til around dinner time, and then it's time for another Neurontin. Joshua goes to bed a couple hours later- and I walk back into the bedroom. Another Baclofen, another Chantix, another Zantac, and now I add in Paxil for anxiety/depression as well. Finally bed time comes, and it's time for the final Neurontin of the day, only now I also have to take a sleeping pill too because the damn steroids have me so wired it's the only way I can sleep.

....then comes a night of restless, unsettled drug induced sleep followed by a very hazey groggy morning struggling to get my bearings. And it begins again. Lather, rinse, repeat.

I look at this routine that is currently my life and think...how the hell did I end up like this? My entire existance is based on drugs. Drugs to stop pain, or stop smoking, or not be an anxiety ridden mess, or stop my brain from malfuctioning. Drugs to sleep, drugs to wake up again. I understand my doctors think they're all necessary- and honestly, I know without them I'd be in a lot of pain in some cases. But at what point do you have to finally just say...enough? I feel like I am on way too much, and I shudder to think what my body would even do if I suddenly stopped them. I'm guessing go into one hell of a shock and revolt against me hugely. But I guess that's my point- I am dependant on all these drugs just to exist. That....bothers me immensely.

Has my body really gotten so fouled up that I 'need' all this to live? And IS it really living if your entire existance is based on chemicals regulating every fuction you have? I'm not sure what the answer is, and honestly, I'm not so sure I even have a choice at this point either way. I just know there's got to be a better answer than pumping my body full of toxins and drugs day after day.

Just my thoughts... Mis

Monday, March 2, 2009

All Geeked Up- Welcome to Insomnia Hell

Well, GREAT news and some massive annoyance. Great first.

The 3 day IV infusion of the steroids went well. I could tell a HUGE difference within hours of day ones. By the end of day 3, Wayne says I was "power walking" everywhere. LOL. Honestly, I have not been this free of MS symptoms in about 8 months. I know it won't last and I'll eventually go back to my baseline, but needless to say I am thoroughly enjoying the break while it's here. I'm even taking Morgan shopping at the mall (yes, the mall, don't faint) tonight. Something I haven't had the strength to do in well... years.

As I mentioned before, my MSRS score (MS severity score) was a 25 before the relapse. At the middle of it, it was a 53. I just got my top score at the worst of the relapse- which was a whopping 71. (yes that's very bad). Thanks to the IV infusion- my MSRS is now a 17. That is the lowest it's ever been since being diagnosed. In fact, that's incredibly low, period.

Now... this is coming at a cost. It is now about 4pm Monday afternoon, and I've slept a total of 9 hours since 8am Friday morning. I'm averaging about 3 hours a sleep a day. Yesterday I was up at 8:30am, and didn't finally sleep til 10am this morning, and then it was a very fitfull, restless sleep for maybe 3 hours. I mean to tell ya, I used to be quite the little 'party girl' many years ago, and I've NEVER been this wired and geeked up in my life. Yeah the energy is a nice change, but right now I am so tired yet wide awake. It's hard to explain. It's like my eyes are so heavy, and my poor body is begging for sleep, yet I simply can't. I'm now on 60mg of oral steroids, that will slowly taper down over the next 20 days til I'm off entirely. Which, obviously is a lot better than 1000mg straight into the bloodstream via IV once a day for 3 days, but man. This is some seriously rough stuff. I have to stop at the pharmacy to pick up a prescription refill, and I'm going to ask the pharmacist if there's any OTC sleep aids I can safely take with all my other current drugs. ANYTHING to actually sleep!

So, that's where I'm at. Loving the lack of MS symptoms, but feeling like a speed freak that's just topped off some pills with some crystal meth and a side of crack for good measure. Heh, anyone want to place wages what the 'crash' from all these roids is gonna be? I'm guessing I'll eventually pass out for about 24 hours straight. At least.

Be well all... I'm off to run a marathon! Muahaha!
*hugs*
Mis