Hello all! I"m feeling a little blue today. My son starts school 2morrow and I'm too tired to get off the sofa again, though I'm worried if I call my neuro I'll be back in the hospital once again - he's treating my MG very aggressively. How do all of you handle this disease emotionally? I'm thinking about going to counseling for this b/c I just feel so helpless and blue.......I had a pretty good week but am now wiped out. Since my diagnosis (March 6th) I've been in the hospital for about 1 month and am starting to feel like this is how it's going to be for the rest of my life......I know I sound whiny, but I'm just mourning my former life and health. It seems like it's always 1 step forward, 2 back. The worst of it is that my sis and I were always very close, but now she has completely pulled away and my hubby (though well intentioned) wants me to "do more, get out of the house more". He just doesn't understand that I'm too tired to get off the sofa/out of the house. People around me call this my "lazy bone" disease and that really hurts my feelings. I've been trying to be optimistic, but it's really gotten me down lately. I'm on Paxil, but that doesn't seem to be working. How do you all handle having this disease? I used to be my family's caretaker, but am reduced to laying around barking orders at them. I hate that! I am so afraid that I'm going to have to go in monthly for IV IG or plasmaphoresis - huge fear of needles - in order to just function! Any suggestions?

Hi Erin,

Sorry you're a little blue today, it must be going around!!
below is a link to a wonderful web site, about people who don't look sick, but in fact are, like us!!! this link goes to a page that explains how precious each bit of my energy is, it may help some of your family and friends, I hope so(also hope the link works!!)
http://www.butyoudontlooksick.com/na...poonTheory.pdf

I thankfully have a wonderful sister, who helps me out no end, and occaisonally cries for me, because it upsets her to see me this way, I know I am very blessed with a family who cares.

I am going through a trying time at the moment, for some reason my MG is bad again, even my neuro is perplexed at how I go from great to terrible all the time. At the moment I'm just holding it together, crying alot more than usual, and getting frustrated!! I wish I had an answer for you, but I've found I just have to take the bad days as they come, because if I get too upset, my MG gets worse!!!
Keep comming here!! talking to like people helps, and if you need to email me, to talk to get things off your chest, we will work something out(my emails not on the forum), most of all don't be hard on yourself, which is something that took me a long time to learn.

Sorry if this is a bit long, you take care, and know I'm thinking of you!!!!
redtail

I wish I could offer some stellar advice, but I'm pretty much in the same boat...at least this way you'll have company.

I would be really ****** if people (I cared about) started calling me (or even thinking) I was lazy!!!...don't they realize that we beat ourselves up enough for what we can't do?

I'm sorry you have to put up with all this. You are in my prayers

I'm sorry you're feeling bad....I hope you feel better soon! Yeah, the blues must be going around. I think that's the worst part of our disease - the uncertainty. Some days I feel like "old Erin" and then *wham!* out of nowhere I'm knocked back on my butt. My oncologist told me that Iwas a "chronic" case the last time I was in the hospital, but I just refuse to believe that. If I give up, then I don't think I'll ever go into remission. Granted, I know that our disease has a mind of it's own and all the wishing in the world won't make it go away, but I'd much rather be positive and hope for the best - it's hard though........I actually made it into work today - it felt pretty darn good. granted, I didn't put in a full day, but it was just nice to actually be around people - I really miss that! Having support from this site makes my life so much easier - I really appreciate all of your kind words, especially since you are feeling so bad now too. What's going on with you? Are you having problems getting around or swallowing or both? You are soooo lucky to have such an amazing sister, maybe my sis and I will be that way again; I truly hope so! I read that article you sent - it was dead on! I'm going to send it to all my friends and family, especially my hubby's family cuz' they accused me of faking it or smoking too much. Granted I shouldn't have smoked, but that's not what caused my MG. They really don't like me and I cannot figure out why, but I guess I shouldn't stress too much about it - it will just make me sick and depress me even more. I see my neuro next Tuesday - please pray for me. I'm worried that he'll try and put me back in the hospital. It's gotten to where they know me on a first name basis - not a good sign..........When you get to feelling better, please let me know how you are and hang in there! I love hearing from you!

This is a good place to visit if you are feeling discouraged since most of us are in the same boat. My situation seems to change like the weather.
My partner also blames my former smoking habit for my problems. I was surprised when my neurologist told us that nicotine may actually be beneficial (it stimulates nicotinic receptors after all). Smoking is not so good for the heart and lungs, though.

By the way, the hot weather seems to wipe me out. I noticed you are in San Antonio, where it is probably scortching hot. Do you feel worse in the heat?

It wipes me out too! Texas is not the place to be if you have this - not fun at all! My nuero told me to stay inside when it's hot out - impossible to do since I have a life to lead............Why can't people just understand that this is an autoimmune disease (?) - there seems to be a lot of misinformation regarding it from the medical community as well......I was actually able to work again today - it felt great! I really missed being around people.......How are you feeling today? When were you diagnosed? Do you have a good neuro? I'm 34 and recently diagnosed in March and have already had a thymectomy (April 22_ and am hoping for remission really soon - who isn't?).Have you had a thymectomy? Sorry for all the questions, but I'm still new at this whole MG thing......... Take care and let me know how you are! Erin

Yesterday was awful and I took so much Mestinon that I got the trots. Today I feel like I can climb Everest. I was just diagnosed 2 weeks ago and I am still trying to learn how to even things out. My neuro told me to get used to the ups and downs, but I hate them. I used to love the heat but now I need A/C or icy cold drinks.
I'm glad you're better today. Enjoy it.

Hey there! I was feeling GREAT yesterday, but stayed home today - my stomach is in knots, so I stayed on the sofa all day - had awful stomach cramps that woke me up @ 5:00 am.....A also drink icy cold drinks all day - all day - and cannot handle the heat - it just wears me out too much. My hubby wants to go to the coast this weekend, but I'm just not up to it - I'd just be stuck in my room anyway and I am far too familiar with that. Are you on steroids yet? Cellcept? Take care! Erin

Hi Erin

Sorry I havn't replied for a while, been babysitting my Aunties 2 dogs!!
My MG, at the moment is affecting my arms, hands(cant type, or use my fingers properly most of the day) legs, back to shufflling like an old lady, and chewing is just so tiring, so I eat soft easy to chew food, no swallowing difficulties yet.
My neuro is bewildered as to why I constantly go from quite good to terrible. It seems just when I start looking good for a few months my body then takes a dive. He is booking me in for a one day course of IVIG, Im luck in that I have had no reactions in the past!!

In regard to coping with heat. For about 5 years I lived in the bush, in an old HOT house, I use to hop in the shower in my summer pyjamas(short bottoms and a tanktop) wet my, very thick(red) hair, and collapse on my bed, when I dried off I'd do it all again. This was how I went to bed, with fan blowing on me. It was the only way I could cope with the heat, I'm lucky I now have a nice little unit, that stays cool, and an airconditioner, which I only needed to use for about 2 hours at night.
I hope things have improved for you
redtail