Connie, I actually think I graduated some kind of handi-capped something or other.
Cause I got my very first dirty look for being in a handi-cappped parking space. Either that, or she was in a miserable mood, and just looked like that all the time. (feel bad for her if she does carry that snarl around all the time)
I told my husband, "hey, I think I just got my first dirty look" I know I look younger than my age. and I do look healthy...But when a person sees me walk, they should notice I'm a little weak kneed shall we say.
I want to do what a friend once told me she does. She carries two little cards, on one, she has info on MG, written very nicely, and then on the other
she has written in detail what she is struggling, how stressful it is to life with an invisible disease..etc.. and then wrote something like, and "You, just made me feel bad, and added to my stresses, and You must have been very rude to me to get this card!"
I laughed so hard, and I wish I could remember exactly what she wrote, but it was real good. I mean real good.
Maybe we should write little cards up..
Love Lizzie

How did you get a handicap sticker?
I went to the target today because I needed some groceries....It was so crowded that I had to park far away...by the time....I walked to the store.....walked all around the store getting what I needed....checked out....pushed my cart out all the way to the car....I was sooo exhausted.....I drove home....put the cold items up....and had to sit/rest for a bit...before putting everything else away!

Hi Lizzie,

I remember the first time i said out loud I was disabled - I was getting on a bus and couldn't step up so i crawled on, explained i had a disability walked to my seat and cried. It was so hard.

I would have LOVED to see that card - my husband is always looking at people in handicapped parking spots and criticizing them, but I always say - you never know - they could be like me! I don't have a sticker myself because I don't drive and if I do feel weak my wonderful hubby just drops me at the door.

Hi Stephanie, I'm sorry you had a rottem experience - I remember how fatiguing shoppping can be when you don't feel well. A necessary evil! I'm pretty sure that a diagnosis of MG qualifies you for a disabled parking badge anywhere in the world. I know of people in the states, canada and uk who all have mild MG and parking badges. I'm not sure how you go about getting one, but as long as you can prove your diagnosis it shouldn't be too hard! Good luck - it would be a good thing just to have in case you need it on bad days!

Take care of yourself and rest up!
~Kathy

My MG was well controlled after my initial diagnosis, thymectomy & start of Mestinon & Imuran.

It was a wonderful lie...I "passed" as healthy and very few people knew I even dealt with MG outside of my family. I worked as a preschool teacher until dh & I fostered and later adopted our two children.

About 2 years ago, things just started going bad again. The trigger being an upper respiratory infection that took a long time to treat.

My symptoms are worst now than at original diagnosis, I think. More problems walking this time and stairs.

People don't get it, which is partly my own fault for hiding the MG to begin with. My dh has been great, but my children get confused at times.

"Why can't you do this anymore, Mommy? Why is Grammy here to clean the house? Why are you so tired, Mommy?" It truly breaks my heart.

I never thought I would look forward to my children going to all day kindergarten, but it may allow me the chance to conserve my energy until they get home from school.

I've even hired a young single mom with a child their age to come play with them outside for a few hours every day. Ride bikes, go the park. The physical things I simply can't do right now.

I have a week of plasmapheresis scheduled soon with 5 days of IVIG right after. I am hoping & praying that this will get things back on track.

Jenna

Oh boy Lizzia can I relate to that. I had a hard time replying to this because it was such a painful time for me. My Mother was in a nursing home and I would get the same crap from the staff for years. On top of that, I'd get it from my three aunts as well. They knew I was sick, but they just didn't acknowledge it. Less than a week after I was home from having my thymectomy, they would call me and yell at me for not be with my mother. When my husband took me to see her, then I got the crap from some of the staff too! It was horrible and I was too sick and weak to even stand up for myself. I always put on a happy brave front for my Mom, she didn't need the stress of having to worry about me. But, the first time she saw me after the surgery she knew I was not well. She didn't understand the MG, but she knew enough. Without saying anything to me, she called a meeting consisting of 8 staff members and my three aunts and basically...gave them all hell! After putting up with it for three years, no one got on my case again. My Mom passed away two years later, but it was the best two years we ever spent together and I miss her dearly. Boy, that was very difficult to write. Thanks for listening.

Hugs,
Pat

what a wonderful mom you had[still have in your heart] and you learned graciousness from her! it shows! too bad your aunts didn't learn like she did have a great day!

Thank you xmas for your kind words, they mean a lot. You have a great day too!
Hugs,
Pat

It sure seems that a disease/affliction that cannot be seen is difficult to understand among some of our family and friends. Perhaps it's because we are such a visual society expecting instant information and solution. On another note, my family physician has scheduled me for a stress test with a cardiologist to ascertain if it's all MG making me tired and breathless or if there is a chance the ticker is complaining!

Hi GI,

That's good your doctor is sending you for a stress test. Last week I had a combo echocardiogram, stress test, then followed by another echo while my heart was still pounding. Fortunatly, my heart is fine. I was having pain on the left side of my chest, that's why my GP sent me to the cardiologist...plus the fact I am going to be 57! haha I am having a chest xray Wednesday to see if anything shows, but I think it's from the thymectomy in 02, since I have always had those pains on the right from nerve damage. I'm not too concerned about it right now. Good luck with yours and let us know how you make out.

Take care,
Pat

Hey Lizzie! I would love to see that card too. Haha.. =) I get silent treatment sometimes, and can recall my first hospital visit when someone pushed me away so they could get into the lift. Was really angry back then, but after that experience, it definitely made me stronger. Lol. When I think back now, feel that it must be quite sad for a person to have to sort of mindset.

Thank you so much for that great idea!!!