3-1/2 weeks
I've had some form of this cold for that long and it does wear on me. I am having so many MG symptoms again that believing that I will be better by summer is getting harder to put my faith in.
I distract myself with out of town company, plans for our trip, and getting Erma settled back in her home at the assisted living setting. She is doing so well.
I had a wonderful visit with Gail. She got to meet my Nicole and Grayson. She brought me all kinds of wonderful resources from the MG support group and a cute little pill container for keeping my Mestinon in when I'm on the go.
Need to paste the crooked smile on my face before church this morning.
I distract myself with out of town company, plans for our trip, and getting Erma settled back in her home at the assisted living setting. She is doing so well.
I had a wonderful visit with Gail. She got to meet my Nicole and Grayson. She brought me all kinds of wonderful resources from the MG support group and a cute little pill container for keeping my Mestinon in when I'm on the go.
Need to paste the crooked smile on my face before church this morning.
Replies
I\'m so glad you get to meet with Gail. I think it\'s very important to be able to connect in person with someone else with MG.
Let me encourage you to keep the hope that better days are ahead. I never feel worse than when I entertain the thought that I may be this way or worse forever. There are so many treatment options, there is one that will work for you.
Cathi
Hang in there. Remember when i was feeling so good? That lasted about 3 days and then the crid of some sort hit and lasted what seemed like forever--like 6 or 7 weeks. I am finally feeling like I am getting control. Yesterday was the first day I felt really good in weeks and then I went to a meeting and people asked how I was/felt. I said terrific. That looked like they did not believe me. Finally someone told me that i do not look like I feel terrific. Well, compared to how I felt weeks before, i felt good. So I am thinking maybe a few more days for my outsides to realize that my insides feel better. Of course, i always walk like a duck or drunk. Told the doctor if he gave me anesthic and it would make me legally drunk when I came out of it, I just may be able to walk a straight line.Keep those positive thoughts. Your vacation is going to be fabulous. Enjoy and enjoy the planning and dreaming before the big event!! Gotta get busy and then do the churches. Attend church, fellowship and then go to another church and babysit the nursery kids while parents are in church, then more fellowship, eat and go to another church and more fellowship. Then come home and crash.
Debbie, I must be rather dense to just be realizing that you get your energy at least your emotional energy from being with other people and asking you to live like a hermit would really be shutting you in prison. I have a daughter like that. You have probably had RSV that you got from Grayson ( see Dr. Shapiro\'s blog here from yesterday ). I say that both because it has hung on so long for you, but also because Grayson didn\'t get over it so easily either. So your MG is unlikely to quiet down until you get over this illness, which you will. No need for despair.
But what there is a need for is a game plan as to how you can continue your active social and family life without coming down with every bug that comes along the pike. You need to get glasses if you don\'t already wear them. Clear lenses are fine. If it makes people ask questions, so much the better. They not only protect your eyes from some of the stuff sneezed into your face, they remind you not to touch or rub them with \"unclean\" hands. A tip I got from my pediatrician father-in-law and cut down markedly on my infection rate during my years of practice. Do be good about washing your hands, soap at home is fine, but sanitizer is better outside for convenience and also when you are keeping Grayson when he is sick. It gets to be a pain to try to wash your hands every time you wipe his nose. Use the neti pot when you have been out or keeping Grayson, he is probably usually contagious at this age even when he looks well. It doesn\'t take long and will just cut down on the dose of bad stuff. It sounds like trouble, but all these infections are trouble (how many chicken soup hugs do you have!). This is not medical advice, just practical advice frome experience, some of it bad. Obviously, if you are not sick, then you can get well, and that crooked smile won\'t have to be pasted on! You may think of other things you can do to avoid illnesses without having to avoid people, these are just some suggestions of what has worked for me while treating sick kids and babysitting.
Love you lots and get well soon! b.
I hope you get better soon I know the feeling.
Bless your heart. So sorry the crud is still hanging on Debbie. You will get better. Spring is around the corner and maybe all the winter germs will go away with the warmth and sunshine. Until then, maybe you and Grayson need to wear bandanas on your mouth and nose and play cowboys and medical masks and play doctor.
hugs
sherry
I hope your feel better soon.. hugs!
So, I will not comment on how I feel today as I may jinx it. Getting ready for a major winter storm. possibly 15\" Hopefully it will fizzle out before it gets here, but I will get my errands done today.
Yes, Beth, I don\'t mind being alone, but my emotional energy comes from others and doing for them. I do have glasses and will start wearing them and will stock up on sanitizer.
I will probably hear from the neuro\'s office today. I don\'t know if she will increase the Imuran as planned or wait until next weeks labs.
Hugs to all