Heads You Win, Tales I Lose

When I was first diagnosed with ms, medically there was baclofen, steroids and not much else. No ABC drugs, nothing on the table for me to choose from as to where to go from here. The first neurologist was a real ****. He basically said whatever you have now is all you will have- no longer able to increase my life insurance, not able to buy disability insurance, no medical science to help me. He did mention what was in the pipeline and what lay on the horizon, but for right now it was just a waiting game. I don't know if because he was just the messenger, but I hated him at once and never went back.

It was quite a wake up call, with two kids under three and a self employed husband, I felt the weight of four people's fate resting on my shoulders as well as ms. The next sentence follows the theme of " there are no atheists in foxholes" and quickly decided to have a long talk with God. Like first of all, wasn't I a good person? Didn't I put others first? I asked for nothing and why did You serve me up a pile crap that stank worse over time? In short, why me ? While I still have no answer for this, I kinda realized that if God was in a Miracle Mood he really had bigger fish to fry and I know I wouldn't want him to waste it on me. I would use it for peace in the Middle East. I came to the conclusion that God doesn't deal the cards, He just watched how I played those I was dealt and we would have a nice long talk on the other side.

Which now brings me to the point of since my diagnosis, there have been around eight new therapies. After the shell shock of an ms dx, how are you supposed to decide? I feel for you newly diagnosed, all the choices and no idea of what your particular ms would benefit from. And side effects? Who knows?

I came to an agreement with God, I would do whatever the professionals recommended if He would just give me enough time to raise my girls. In short, I would take whatever was at hand for now to insure their future. I didn't feel like there was the luxury of time to make decisions and I would deal with the consequences later. Since I didn't hear back from the heavens that is how I have lived my for the past twenty years. Was I wise? I don't know. I have taken the A and B drugs, and now I am going to start BG12. The one drug I have truly noticed a benefit from is Ampyra, gait and stamina have improved, but that's just me. And IV steroids gives a brief boost.

So for you who have just been served your helping of crap, don't panic. You are early in your ms and there are so many options, one of them is to do nothing. You make the best choice you can and hopefully the flip side of your decision will be manageable.

As for me, well my veins are all played out after 20 years of steroids. I also weigh 20 lbs. more that I like. My liver seems to be holding out, but sometimes I look in the mirror and wonder where that girl with no fear went, the girl with courage and guts? The pretty girl with the dark hair and straight white teeth is now a stooped old lady at 54. But you know, i think my struggle has help my girls. They have witness daily the burdens life places on you, and how we coped as family made them kind and generous people. life isn't all trophies and back pats. They just learned this lesson earlier than most.

And when I look for the girl with courage and guts, I don't need a mirror. I just look at one of my college educated daughters and am very proud. Screw you, MS.
mrsbuzzkill mrsbuzzkill
51-55
5 Responses Apr 17, 2013

Oh yes me too, we're either guinea pigs or cash cows the money is in the meds docs are given incentives to promote certain medications and then they reprimend me for needing pain medication, muscle relaxers

Beautifully said! I'm newly diagnosed 3yrs, tried Copaxone a year, a waist, ampyra helped 4 3 days then caused pain, 4 the past 2 yrs I've been 1x month steroids & 1x month cytoxan (chemo) it's working wonders! I. Make meditation a daily ritual. Nothings more important than than taking care of your mental & emotional well being living with a disease like this. Every breath u take, thank God u can. Ask God 2 give u the strength 2 accept & deal with anything that bothers u.. Be good 2 urself, keep ur eyes on God's promises, BELIEVE "ask& it is given", fill ur heart with peace & love.

Im diagnosed 3 yrs ago, i wasted 1 yr on Copaxone m.s. shots r proteins that create a decoy immune system that helps the body from attacking itself so badly. what's working : chemotherapy drip 3-400 mg 1nce 4 an hr & 500 mg steroids 1nce month for an hr. Try that, it helps better than any 1-3 x week shots. Keep ur mind meditating on thank'n God 4 wut u do ha e & can do. God loves u & so do i. NO PERSON EVER CRIES ALONE. B GOOD 2 URSELF 4 your family sake :)

Thank you. I went from avonex to beta seron to tysabri. What kind of chemo are you taking? I do thank God everyday for my blessings, I am so fortunate to have so much: a nice family, good insurance, a roof over my head among other things.

Hi :) hope ur well 2day. I\'m well. wuts tysabri like? I heard about it, sounded 2 scary a risk 2 try. 1x a month i get chemo (cytoxan) 400mg & 1000 mg steroids, i love it, no side effects & makes me better. Look n2 it, chemo is like rebooting a dysfunctional computer so it works wonder, no more shots 4 me.Tramadol 4 pains & discomfort is xcellent, its not narcotic & no side effects. the worse thing about ms is the whole having 2 take \" medicine\" wut not 2 & w wut works.

Sorry my messages come out lousy, its my phone. Anyway, ur n constant prayer & i hope tysabri works 4 u, how long have u been on it, do u have gait problems? I used 2, But i get botox every 3 months helps tremendously 2 straighten my limp but the chemo is better than any shots (avonex & copaxone). U hear about b12 pill? I think the only way 2 b @ peace with ms. i i is prayer, meditation

I just started tysabri 1month ago. I know it can be dangerous, but I trust God didn\'t bring me this far only to have me feel now. Besides, I have farted around with those injectables ever since they came out with them, I I believe your body probably builds up an immunity to them, so the longer you use them the less the benefit. I too have had Botox, I still do, it addresses the spasticity in my feet. It works great and no side effects my gait isn\'t pretty and I use a walker, but I manage to get around. I just worry about today and let God take care of tomorrow.

Hi :) hope ur well. I'm weller everyday by the grace & love of God. I take Cytoxan- chemo. it's an 1hr drip, painless only side effect is drippy nose 4 1-2 days. It works wonders, no more shots 4 me. Tysabri sounded 2 scary 4 me, ?'s it like? Is it infusion, how often, any side effects? Stay n prayer, Fund a way 2 beleive urself into FEELING BETTER EVERYDAY. God loves u & so do i, b well & take care.

2 More Responses

Screw MS!

Good post Buzz You are absolutely right on the foxhole thingy. Those were the days when I had many serious discussions with the big guy. I guess he spent so much time taking care of me during my army days he must have thought, "I helped you out of one battle ... now this war you're on your own".
It's true! I've been fighting the MS fight for 51 years. Now I'm a 62. A man who's tired of fighting. It's the 12th round but thanks to many (especially my many grandchildren) I'm still here.
I LOOK FORWARD TO YOUR POSTS BUZZ!
Keep on keeping on. You make my days when I read your posts. Thanks.
It's high noon. Must be cocktail time (I don't drink! Too bad eh?)
I'm outta here! Seppe

Have one for me.