Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
We've been on vacation all week in Maine, and I miscalculated the amount of meds I needed to get through the week. I've been taking more mestinon than usual, and I saw yesterday I only had 4 pills left to get me through Tuesday night!
Also I was short on imuran! Of course I panicked, and wailed about my stupidity, etc. It seemed like a lot of pills when I was packing, but I should have counted everything and taken extra.
We went to Rite Aid, and I blurted out my dilemma to the pharmacist, who was sympathetic -- after a few minutes search she found that there were Mestinon pills in a store in Falmouth. While I waited, I called Ross to tell him we would be late (we had been planning a visit since last week). Hallelujah! Ross had a full supply of all the pills I needed, so I apologized to the somewhat mystified pharmacist -- explaining with a silly grin that I had a friend with MG in South Portland, and I wouldn't need the help.
We sped to Ross's house and had a great visit with him and Ellen -- he looks great, and is nicer than you can imagine. Instantly relaxed (now that I had enough drugs to get me through the next two days), we walked on the beach near his house and chatted about used books, Casco Bay islands (the one we stay on, Long Island, has a street named "Ross Way"!), Curt Miller, and global warming, while my girls threw sand at each other and my wife fell into a deep conversation with Ellen. Too soon we had to leave, but we will be back.
The moral? Always make sure you have more than enough medications when you go on vacation and, if you can't manage that, make sure Ross is your friend! Thanks Ross! ~joe
Also I was short on imuran! Of course I panicked, and wailed about my stupidity, etc. It seemed like a lot of pills when I was packing, but I should have counted everything and taken extra.
We went to Rite Aid, and I blurted out my dilemma to the pharmacist, who was sympathetic -- after a few minutes search she found that there were Mestinon pills in a store in Falmouth. While I waited, I called Ross to tell him we would be late (we had been planning a visit since last week). Hallelujah! Ross had a full supply of all the pills I needed, so I apologized to the somewhat mystified pharmacist -- explaining with a silly grin that I had a friend with MG in South Portland, and I wouldn't need the help.
We sped to Ross's house and had a great visit with him and Ellen -- he looks great, and is nicer than you can imagine. Instantly relaxed (now that I had enough drugs to get me through the next two days), we walked on the beach near his house and chatted about used books, Casco Bay islands (the one we stay on, Long Island, has a street named "Ross Way"!), Curt Miller, and global warming, while my girls threw sand at each other and my wife fell into a deep conversation with Ellen. Too soon we had to leave, but we will be back.
The moral? Always make sure you have more than enough medications when you go on vacation and, if you can't manage that, make sure Ross is your friend! Thanks Ross! ~joe
Isn't this support group the greatest! Wherever our travels take us...almost all over the world, we have DS family to meet and greet.
I have learned to pack my whole bottles when I travel...never know what can come up. I have forgotten my mestinon before and have had to make a trip to a Walgreens for a new script....it's a scary feeling to be without our meds!
hugs
sherry
Awesome stuff!
TJ
I knew Joe was a stand-up guy, long before I ever met him.
First, he had the amazing good-sense - to marry my wonderful neighbor, Laura!
Laura's family has been so good to me - and my family, over the years!
How does a guy - get so lucky in love!
Here's another thing.
Joe was the first MG'er, I ever met in person.
All of you! Know how special this is! And - will be!
Last year, Joe talked to me for 2 hours, while on vacation. He stood me up straight - and helped me take - those first critical steps of positive thinking - along this journey of 1,000 miles.
Joe also told me about - this wonderful MG support group on DS.
''Get on there'', he said, ''You'll get some terrific help!''
Joe told me about this guy named Curt Miller - who had helped Joe so much. (We are all - very precious to each other here - aren't we?)
Without Joe? I never would have met Marty, the 2nd MG'er I met in person (... who I owe a visit. Hang on Marty, I'll get there!)
Without Joe? I would never have met - All of You, here.
Among the Nearest, Dearest People I know.
If you belong to this support group - you know what I mean!
And you should see Joe's two gorgeous kids!
And the beach - gave them a chance to show -
- just how fast - the wind can really run!
I have a photo to post, of our visit. I'm having trouble posting photos lately, and don't know why. Soon as I figure it out - I'll upload.
Thank you, Mary - for introducing me to Joe!
(Mary is my sister-in-law.)
Hugs to All of You!
- Ross
wow.......we all should be proud.
hugs,
Annette
Should we consider planning an MG-DS convention?
;)
This group is amazing and everyone is always so helpful and supportive
Love the picture!