Quote:
Originally Posted by Nicknerd
Thanks, Kendra...
I know! the pharmacist is so nice...She gave me two mestinon time-release to tide me over until tomorrow...Thank God..I'm able to move my tongue a bit now, and my face isn't so weak...
i know what you mean about the medicines...For me, the prednisone causes a lot of strange side-effects...When I was @ 80mgs, I got horrid palpitations, sweats, shakiness...My blood-sugar was really high when this would happen...Now that I'm back at 60mgs, my blood sugar isn't so bad, but I notice that my MG symptoms have gotten worse...
It does suck to have this, no matter what age you are...Sometimes, my energy levels are up and I feel like going out, or going back to work, I feel so bored staying at home all the time... but then I remember that i can't talk...I feel trapped by this...I wish there was a magic wand that would take this away. Sometimes, one thing goes away, and another things surfaces...Sometimes, I really miss my old life, and I don't want to lay it to rest...I just want it back for like 3-months, and then I'll take the symptoms back again...I've been bargaining a lot lately with someone, maybe God...But I find that it's better to forget how things used to be, because it's too sad.
Sorry I'm being so depressing 
Edit: Hey guys, I just wanted to say sorry for being so depressing...i've been feeling pretty sick the last few days, and have been in a bad mood...I think that my MG is pretty abnormal, so for the newbies, don't worry, you will get better! Mine is just really resistant, but most people get well from the regular meds...Don't let my experience reflect how yours might be!
*hugs*
nicky |
Dear Nicky,
I may be wrong in what I am saying but I think that newbies want to know what to expect from their illness and not have a pink picture that is not true, and will make them feel that something is wrong with them when they don't fit. some will have full remission, but some will not. but all can eventually have a reasonably good life. even if quite different then what they thought it would be. your MG is abnormal, my MG is abnormal, so I am asking myself is there really a "normal" MG?
with time you will sort of forget how you were before. not totally, as you will still be you, but you will learn to accpet your physical dissabilities (what ever they will be) and sort of get them woven into your life.
being able to walk or not will become less of an issue. getting there will be your goal, and if you need a wheelchair for that-what the heck.
I am telling you this not only from my own experience, but from that of other patients, with MG and also other diseases.
but, this takes time and unfortunatley there are no short cuts. at least not any that I am aware of. and during that time you need all the support you can get, and also "permission" from yourself to feel really lousy, mourn your previous abilities and gradually find and build your new ones. this is entirely normal and don't let anyone tell you that it's not.
I can only speak for myself, but I am quite sure that everyone has had times of despair when dealing with all this. I definitely did.
and don't settle for only three good months. you deserve a life time of good months, and there is no reason why you should not have that, eventually, remission or not. and I think it is too early to decide that your illness is resistant. you may still have significant improvement.
alice