It is a very frustrating disease. I for the longest time was in the exact same boat as you describe. But sometime in the last year I started to get much worse. And since surgery in April I just feel like I never really felt much better. I really hate hospitals. It took a lot of convincing on my family's part to get me to go. Well it's after hours now and I still have not heard when or if I will be getting the plasma exchange. I tried all day to get a hold of the person who co-ordinates it. I don't even know how many days it will be or how I am gonna afford the gas to get there, but at least if I knew the plan I could try and figure it out over the weekend. I have 3 kids for crying out loud. Sorry I am just so frustrated. I am still feeling pretty weak. There is just too much going on for me right now. It would take 5 pages to go into it all. LOL. Ah well what can you do right?
I hope you get some good news monday and I would go with that plan. I think sometimes we have to show them how bad it gets.
Good Luck!
Hugs
Carrie
Quote:
Originally Posted by redtail
It really is a very frustrating disease.
Thankfully I havn't had any rushes to hospital er's for my mg.
Buuut visits to my neuro are always a bit of a struggle, cos he does all the chicken dance tests etc, and I have the strenth of a normal person, ( said sarcastically)
At home its a different story, I struggle to type and at other times other easy day to day things.
Sometimes I want to say to him " hey why not come home with me for a week and see just what I'm like".
I think I've decided next time I'm about to see him, the night before I will stay up to 2am, which always makes my mg worse, and after a 3 hour car journey, he may just see what I'm like generally...............I'll let you know, I see him Monday.
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