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! 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 - 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, 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

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! 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.............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)

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

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.......................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