Feeling blue......how do you guys handle having MG?
 

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.:grouphug:

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:D............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

Hey Redtail! I'm glad to hear you're going in for IV IG - I call that stuff "liquid gold" cuz' it has almost a "magical" effect on me - I looooooove that stuff! I have alreay begged my neuro tp give me that in the future versus plasmaphoresis - that was way too scary - I guess I'm just neurotic, but this disease has already taken so much of my control away that I cling to the little bit I have.....weird, huh? You are going to feel GREAT after your IV IG - I just know it! When are you going in? I'm going to do some serious praying for you.....for remission, all of it! I've forgotten, what meds are you on right now? My doc is trying to "wean" me off of steroids and put me on Cellcept - my hubby says he has noticed a difference recently..........I have been able to put in serveral hours a day of work recently, which is a BIG improvement! You know how that goes, though, up one day, down the next..........I am on antidepressants now - Paxil, and I hope they kick in soon! I keep hoping I'll wake up one morning and this will all be a bad dream, but then reality sets in again! I have terrible night sweats, do you? I have to change clothes over and over - it's so gross! My face has gone down quite a bit, though. No one recognized me before -it was weird! I am on over 20 pills a day right now - from Cellcept to Xanax (for anxiety)............but I do feel like remission is RIGHT around the corner - I know you feel knid of puny right now, but when you feel better, please let me know how you are - I miss talking to you!
Erin

Hi Erin,
thanks for your reply. I have to agree IVIG is liquid gold!! last time I had it I felt wonderful for about 6 weeks, pity I can't have it a bit more often, each time I have it I'm reminded of how expensive it is, even tho it all comes from donated blood from The Red Cross. Not sure when I'm going in, its hard stuff to get hold of!!
I'm on Prednisolone, cellcept,mestinon, an antidepressant(couldn't live without them!!) and several other medications to fix the problems these medications cause!!
I went through a period when I sweated so much my whole bed would be soaked. I changed my anti depressants, this helped alot. I still have the occasional night sweats, but not as bad as they once were.
Even after nearly six years I still think maybe one day, I will wake up and find its all been a bad dream, hmmm still waiting.
I'm trying to be good to myself at the moment, and not stress that I can't do much, its hard tho, still I know there is a light at the end of the tunnel, and things will get better.
I hope things arn't too bad for you today
take care
redtail

The data suggest that a positive outlook improves survival in cancer patients... so I just tell myself to be happy &%$#@! it! and when that doesn't work I log on to this forum...I guess misery loves company

Redtail...I don't know how you can live without AC...if the temperatrue is above 78 F I start to slow down and over 85 F I become useless.

Hey Eeyore, I did fail to mention just how long the tunnel is, and in which lifetime I'll see it!!!!
Today I rekon that the tunnel has had a major rockfall, and will be closed until further notice!!!!!!!!
I am now in a until that has airconditioning!!!!!!!!!!!!!!! YAY, and it makes a huge difference
redtail

How are you feeling today?
 

How are you doing today? I am at home resting. I've had a pretty good week, but am wiped today! I am trying to take it easy, but feel so lazy just sitting on my sofa........Saw my neuro and hema this week - my hema thinks I'm going into remission - YAY! MY neuro is very cautious, but he did reduce my meds once again and wants to reduce my Mestinon (I'm up to 5 a day right now)........We'll see how that goes. I just don't understand why more people haven't had a thymectomy - for me it was presented as my only option
for a "normal" life, but that little boy Dallas and I are the only ones that have had it done - and my thymus was "normal" when it was removed. If I DO go into remission, I know that having my thymus removed was key in my remission............I'm gonna rest for a bit - let me know how you are when you get a chance!
Erin

Lots of us have had thymectomies, myself included. We just don't mention it, as we realize after years of waiting, that the elusive remission just ain't happenin'. True remissions don't happen all that often and I think your hemo did you a disservice by saying you are going into remission. Based on what???? Antibody levels??? While I hope it's TRUE (wouldn't THAT be cool!?), it's very very early to be throwing the word around so casually and doing so raises false hopes as MG is so very often a 3 steps forward, 2 back kind of deal. Enjoy the good times, keep out hope for the future but don't put all your hopes and dreams into the thymectomy (or any other treatment) basket.

Missy--who knows of only ONE person who has ever had true, drug free remission.

Really? Wow! I did not know that! Don't I feel like a goofball!?! I know what you mean about the 3 steps forward, 2 steps back, that's why I don't want to get my hopes up too much............How long have you had MG? Are you still on tons of meds like me? I was hoping that at some point they would be reduced, but only time will tell. I know remission is a long shot, but I"ve got to keep the faith, cuz' w/out that I'd just give up, you know? Thanks for the info anf let me know how you are when you get a chance! Erin

I've had MG 10 years, had thymectomy in 2000. Still on tons of meds, still have TONS of symptoms. Nothing is really better. Lost my career in 2001, and my child has never known me as a strong mom. Missy

What did you do before you lost your career? How old is your child? Mine is 16 - going on 30. He is a handful, but keeps me laughing! What meds are you on? So, you still have all the symptoms - problems walking, double vision, swallowing, etc? Are you able to be on disability? Do you have a support group? Sorry for all my questions, but I'm still new to this whole MG thing.........I was diagnosed in march........

Hi Erin,
don't feel like a goofball, as Missy said, we don't all say everything about ourselves, or may have done in the past, and don't wish to repeat ourselves. Or like me be in a bad place and really not have any extra "spoons" to add a post.
I think I discovered why my MG is so bad at the moment, I've got some sort of tummy bug, who knows what it is, gastro, medication?!?!?!?!?!

I to have had a thymectomy, back in 2003, I was doing really well for a while.
The last few days have been awful, I've had to get my Mum to take me down the street, cos I dont even have enough energy to drive, let alone the little things in life. I've spent the last 3 days in bed!! most unusual for me, but man am I tired and muscle fatigued!!I havn't been this bad for quite a while.

I'm so sorry to complain on your thread, just think I need to vent a little.
Hope everyone else reading this is doing a bit better than I am.
redtail

Hello again! I'm sorry you aren't feeling well - this darn disease just won't seem to give you a break, will it? Is your mom taking care of you? Do you have someone to help you out? Gosh I wish we all lived closer to each other - that way we could do something to help each other out.......Staying in bed is frustrating, I know buy you need to make sure and try to take really good care of yourself and try to just relax - easier said than done I know. I personally hate it when I'm down, bu have recently taken up sewing (when my vision/fingers allow) - not exactly exciting, but at least my WHOLE family now has tons of pillows.................How long were you well after your thymectomy? Days? Months? Years? I don't want to get get my hopes up too high, but on the other hand the thought of being sick for the rest of my life is just too much for me to handle right now. If I have to go in every month for IV IG or whatever in order to do so, then I will, but the thought of not being able to properly take care of my fellas is just too much for me. I'm still new to this (it's really only been 5 months since my diagnosis and surgery), so maybe I'm still in denial, but I grew up taking care of my chroncally ill Grandmother and saw how much she suffered (she finally had a heart transplant in 87, but passed in 92)......I saw her take pill after pill and bedridden for years and I truly don't know how she did it.She was an amazing woman. Her strength and dignity were truly amazing. She never complained - even when she was bleeding out of her eyes.........it was horrible. I started taking care of her after my dad refused (I was 13 @ the time) and it was really hard. We had to wear masks and sanitize everything we touched. I for one will conitnue to hope and pray for remission until my last day on earth. You WERE NOT complaining, just explaining what you are going through right now and I always like to hear from you:D........I hope you feel better really soon! Know that I am praying for you..............Erin

Hi Erin,
thanks!! Mum lives about a 3 minute drive away, so she's there if I need her, her twin lives 3 doors down from me, so she will be right here if I need her. At the moment I'm coping on my own, resting not eating much, so I don't really need thier help.

I guess after my thymectomy in '03 I did really well for a while, it took months I think,worked part time. Now I don't feel I'm doing as well, or I wonder if I wasn't doing great back then but had not choice to soldier on and struggle with life. Before the thym' I had not strength or energy, I would come home from work, and have a glass of milk for dinner. At least now except on my worst days I can cook dinner. The housework sometimes gets left for a while, but on the whole I'm better than when I was first diagnosed, just not back to my old self!!
I often think I'm still in denile, I sometimes push myself way to far, when I should be resting or at least taking it easier.
Wow, that must have been a hard thing taking care of your Grandmother from such a young age!
I bought myself a sewing machine last year, and have made a few things, and hopefully will continue to do so. I really do enjoy sewing, a bug I caught off my Mum.
Hope things continue to improve
redtail

It is so great that your mom is so close - I know my mom has been just great! She drives me and my hubby crazy, but it has been wonderful having her here - in fact we are thinking about having her move in here with us and staying upstairs so she has privacy:D......She had been staying with my little sis, but that doesn't seem to be working out right now.

Yeah, it was kind of hard taking care of my Grandmother, but it had to be done, and I loved her so much that it really wasn't that much work. After her heart transplant she needed full time help and I'm glad I was able to help. My dad fell in love with this awful woman and after that stoppped helping my Gram out. In fact, I though about staying with her full time, but she did finally get a live in nurse, and was really independant - she was truly the best and I miss her so much. Se passed when my son was 2, so he doesn't really remember her, but I tell him stories about her all the time.

I think my Cellcept has kicked in finally! My hubby and sis have both said that I seem to have much more energy - only time will tell!

Have you put on a lot of weight since your surgery? I used to be a size 2/4, now I'm up to a 8/10 - it's driving me crazy! I know most of it is the steroids, and am thankful that I can now swallow, eat and all of that, but it's just weird looking like this - I was only 5 lbs. heavier when I went in to have my son! Do you have strange cravings now that you are on all the meds? I was talking to this wonderful woman at my Cancer Care clinic, and she has all the same cravings as I do - especailly when she was going thorugh chemo.....she was such a sweet lady! She was so brave, too! I have met the most amazing people since I've been sick. They are so strong and brave that it makes me feel like such a big baby.............

How are you doing today? Are you feeling better? I feel a little under the weather today - sore throat and all of that......I plan on staying on the sofa/in bed all day. My son went camping with his best friend last night and should be home soon.

Take care!
Erin

Hi Erin,

Sorry to hear you're not too well.
I'm feeling better than I was not feeling sick, my mg is still bad, and I am totally exhausted today. Yesterday was Fathers day here, so I had Mum and Dad over for lunch. I cooked roast chicken and vegies, and apple pie(home cooked of course!!) I over did it I know, but it was worth it, they both enjoyed it, and my big sister called in, in the afternoon. It was a great day.

I only started putting on weight over the last 14 months or so, after a minor crisis, my pred was bumped up to 40mg daily, then I started eating like there was no tomorrow. I'm now trying to re educate my body to convice it I don't need all the food it thinks it wants.
Hope you are feeling better today.
take care
redtail

[Hello again! Things have been better here - I stayed home today to just rest - it was WONDERFUL! I have been going to work recently - that has totally been a blessing , but has knocked me on my butt though I truly missed having people around - being housebound just isn't for me:)........Wow you made a really nice dinner for your dad - did that knock you out? Do you notice your energy going wayyyyyyy up and then wayyyyyyyyyyy down very quickly? I ebb/flow throughout the day - all day long.

MY weight is still an issue for me. I used to stay around 120-125, now I'm up to 140. It doesn't sound like that much, but on my frame it makes a HUGE difference. Regardless, I'm just thankful to be able to eat again, so I guess I should stop whining:D.......Take care and let me know how you are when you get chance....

Erin [/COLOR]

Hi Erin,

Yep cooking it all took it out of me, but was sooo worth it.
Yes I do ebb and flow thru out the day, at the moment mornings are bad until I take my first mestinon, and after lunch I now feel very tired, and even end up in bed, which is most unusual for me. A few months ago I ended up in hospital with a sinus infection, and havn't felt 100% since then, befor then I was walking most days, and felt quite good, the nature of the disease I guess.
Glad you had a nice rest, hope everything is ok with you
redtail

Hey there!
 

Hey there! I was @ the office again today - got a lot done!I love days like 2day! I even went with my sis to pick up my niece @ her school - she's 6 and thinks I"m really cool and brought her a few "goodies" to show off. She is so funny! She tells all of her classmates about my disease and how many meds I take like it's really cool. I can't wait to go and have lunch with her; I was just worried that she'd be embarrassed if I showed up @ her school with my HUGE face:D - no worries though. She was so proud I was there!

We are gearing up for Hurricane Ike this weekend. I sure hope my house doesn't take too much of a beating.I'm going to gas up my car and get lots of food for this weekend..........They are predicting a whopper of a storm!

Hey there!
 

Hey there! I was @ the office again today - got a lot done!I love days like 2day! I even went with my sis to pick up my niece @ her school - she's 6 and thinks I"m really cool and brought her a few "goodies" to show off. She is so funny! She tells all of her classmates about my disease and how many meds I take like it's really cool. I can't wait to go and have lunch with her; I was just worried that she'd be embarrassed if I showed up @ her school with my HUGE face:D - no worries though. She was so proud I was there!

We are gearing up for Hurricane Ike this weekend. I sure hope my house doesn't take too much of a beating.I'm going to gas up my car and get lots of food for this weekend..........They are predicting a whopper of a storm!

I guess we all ebb and flow througout the day. I was getting worried about it....of course I worry about everything ALL THE TIME NOW - I'm going to ask my doc to up my dosage of antidepressants:D......Every time I sneeze, I want to call my doc but am worried he'll think I'm wacko! I just don't want to end up in the hospital again - that is a horrible place, no sleep, nurses and drs. coming in all the time.........YUCK!

Hope you are feeling better today!

Take Care,
Erin

:hug: be safe erin.

i'm north of you, in the dfw area. we are expecting the outer bands on saturday.

Thanks!
 

THank you! You too! We all need to "hunker down"............:hug:

Erin

Hi Erin,

thinking of you and anyone else who may be in the hurricanes pathway, its all in the news at the moment, and it looks terrible.

I don't blame you for wanting to ring your doctor all the time, so you don't end up in hospital, if he has a problem, say it will save money if you ring him and don't end up in hospital!!

Hope you are safe,
take care
redtail

THank you!
 

Thank you! I think we are going to be OK, but it is going to little rough for a while - especially for people who live in Houston - like my aunt and uncle........

I'll check in with you tomorrow to see how you are feeling!

Take it easy!
Erin

Hi Erin,

hows it going over there windy?
I am totally exhausted today, its the 3rd anniversery of the death of my cousin who was like a sister to me. Me my Aunty and her daughter went up to Mums place and had lunch, then went to the cemetry, it was all very nice.
Now I just want to crawl into bed, if only I didn't have to eat to take all my tablets!!!!

How are you going?? Hope you're not too stressed over the hurricane.
take care
redtail

Hello! It's not too bad right now.......just took my dogs (I have 4 little dogs - 3 poms and 1 chihuahua) outside to "go" and it was fine - no wind yet, though it will be heading this way later today..FUN! I'm trying to convince my little sis to come over and bring niece, since she is terrified of little storms, so the big one might be a little rough for her - I'm planning on having a dance off with Lilli, so she won't even notice the storm, it will involve her dancing A LOT and me dancing a little, but anything to keep her mind off the storm:D - Sorry to hear you're so tired today - try and get some good rest - that's a joke, right? I know how frustrating it is to have to lie around and try to choke down pills. Every time I am congested, I panic when I have to take my pills - I hate not being able to breathe - too scary for me:eek:, but I know I HAVE to take them, otherwise we end up back in the hospital with an IV or PICC line in us............

I know this sounds cheesy, but I wanted to run an idea by you: I was planning on having some t-shirts printed up with something like " Ask me about MG" and printing up some pamphlets about our disease. Since so little is known about our disease, I'd like to inform to general public about it - all of it - the good/bad and in between. I was also asked by my support group (in San Antonio) to write up a testimonial about MG and was wondering if you would be willing to do the same - not anything fancy, just how our disease has affected our lives.........I've also decided to be on another site here in SA to answer some questions regarding our disease. I feel so passionately about MG, yet no one seems to know much about it. There are only about 150 people in SA with this disease (out of 2 million or so people), so any information to anyone with our disease would be a good thing........Before I found this site I was MISERABLE! I was so scared all the time, and was afraid to even go to sleep, for fear I wouldn't wake up (when it was really bad), so iif it can help alleviate one person's fears, I think it would be a good thing, what do you think? I do know that without support from you and this website I would not be as happy as I have been, b/c I know I can always log on and find a kind person who is going through what I'm going through and help calm me down..........

I am so sorry about your cousin. That is such a hard thing to deal with. What happened to her? How old was she? Did she have children? I know you are tired and stressed, but please let me know if there is anything I can do when you get some time.

Sorry for writing so much........................

Erin:D

I've run into a person who did the shirt thing in my home town (there are 3 or 4 of us here with MG). I found it a little strange, actually. Maybe it's just me, but I don't see why the general public NEEDS to know about it anymore than we need to know about Charcot Marie Tooth disease or Anti-Phospho Lipid Antibody syndrome or any of the countless other rare diseases. In actuality, the general public just doesn't care unless it affects THEM. I am a health care professional, and when I mentioned what was going on with me during the early years, most of my coworkers knew little about the disease, or even indicated they wanted to learn. I just got pity. Unfortunately, that is just human nature.

Now if you want to print up some little info sheets to send to a friend or family member who ASKS you about what you're going through, that is perfectly lovely and would actually give you a chance to personalize it with the areas that affect you the most (swallow/double vision/etc). I know as a newbie, you are trying to make sense of this monster, and doing this kind of stuff helps. I hope you find a reliable support system to help you cope--it does take time to find that circle of friends who are willing to go the distance with you.

Take care!

BTW---"Ike" finally struck here--we are 200 miles north of San Antonio. All he had to give us was a tiny bit of wind and a light shower. He ain't so tough anymore! We were actually hoping for several inches of rain--it's not to be.

Hi Erin,

I think your idea sounds great. Over here in Scotland there is a fairly active MG association and they have loads of information pamphlets, posters and clothes availble. I bought a hoody a couple of years ago but sadly with my weight gain it no longer fits! :wink: You might be able to get some ideas ect from their website - let me know if I can be of help (I know sometimes international shipping etc can be a pain).

I've always found people to be generally interested in MG - because I look so healthy and managed to live a fairly active life they are always surprised to find out I'm actually heavily medicated and need to constantly self-monitor! I got some pamphlets about MG from the MGA here and showed them to the people I work with and they were all full of questions etc. The pamphlets are well written too - a sort of "everymans" information pack (they speak about MG as a "rag-doll disorder). The MGA also do a bunch of fundraisers and even send people with MG into schools to speak to kids about what it's like. I think any type of information is good and everyone should be educated to the best of their ability. Maybe some won't care (of course) but who knows - you might help one person who has all the right symptoms and didn't know what was going on!

What ever you decide to do keep us posted!

Ike totally missed us............
 

Ike totally missed us.............no rain (or very little) and very little wind. We were also hoping for a couple of inches of rain - everything is dying here...........

Thank you! I think that what you are doing in Scotland is wonderful! As for me, I'd love to try and spread awareness. I think any info is a wonderful thing! MY hubby has a radio show (on Saturdays) and has spoken quite a bit about my MG and we have actually gotten calls @ our office asking about MG as well as saying that people are praying for me..............I think that is sooooooo sweet!

People ask about my thymectomy scar all the time and then ask about MG, so why not tell them? Like you said, they have no idea that we are always heavily medicated and yet lead fairly normal lives (or hope to):D

Take care and let me know how you are when you get a chance!
Erin:D

P.S. My little niece (she's 6) thinks that MG is "cool"! She tells all of her classmates that her auntie has "myashtenia gravis" and then proceeds to ask my sis if I'm @ another dr's appt and then tells all of her friends that I'm on "a lot of meds" but am getting better.........Isn't it weird what little kids perceive @ "cool"? She also wants me to have lunch with her this week @ school and meet all of her friends...............:D........I was worried that she'd be embarrassed by my "moon face", but apparently I'm cool! I just love little ones! She comes over and we have dance competitions - she just brings such joy to my life! I love having her over!

Hi Erin,

sorry its taken a few days to reply, am a bit tired at the moment. I think if you want to do the t shirts go for it. Its not something I would want to do my self, but I think its a good idea.
As for writing a testimonial, well I'd love to do that for you, but at the moment Im just so tired and typing and trying to think of what to write would be difficult(I am starting out my days with less spoons than normal!!), but it depends on how quickly you want it!?!?!?

I belong to the western Austraian MG friends and support group, they have had small pamphlets, booklets and a pamphlet about drugs to avoid to give to Drs etc printed up these are great, I give them to familys friends hospitals dentists, vvery helpful.

Hope you get some rain soon, we to are having a dry spell, it was the driest August in 30 years!! it seems we either have to little or too much rain around the world.

take care
redtail