one year ago today......
 

I had my thymectomy. OUCH!!!! I don't want to do that again.

I also had a neuro checkup today to see how the CellCept is going. Only one month into it though, so probably too soon to tell. He keeps thinking I should be in remission due to the surgery. Now he is wondering if there was some thymus tissue left in there.

Right now my droopy eye is mostly open. The main problem I am having is no strength in my quadriceps. School starts on the 24th. I teach in two buildings and one of them is not air conditioned, so I am sure I will start going downhill. We have had a VERY COOL summer, but supposed to hit the 90's tomorrow. My classroom is on the 2nd floor also.

We'll check back in one month. I will have my blood tested on Tue. He wants to hold off starting the prednisone if possible. He is waiting for me to make the call of a more serious plan of attack of the MG.

I asked about the shingles and H1N1 shots. He said no because my immune system is so goofed up and unstable now that those should not be thrown in the mix.

I've heard on the news that school starting back up this week are having problems with H1N1 spreading.

Congrats on the 1 year annivarsary! Mind you I had my surgery 18 years ago but back then my Doctor told me it is very possible not to get out all the thymus. As for your remission it takes time. It took just over a year for me to go into a complete, drug free remission but when I did, it lasted 17 years :D As for returning to work, let your boss know what is going on and try to take it as easy as possible, keep cool wraps for your neck handy and sit while teaching if possible. As for shots, I agree with your Doctor, don't get them. Good luck and keep us updated.

I do keep my supt., principal, co-teachers well informed of how I am feeling, medicines, treatments, etc. Wow, 17 years of remission, that would be great.
I will keep you updated. :)

Congratulations, T! I think that sooner than later, you'll be doing great, just like that nurse I met in the hospital! :)

I agree with your doc. about not getting the shots, although I understand your worries with being in a heavilly populated place with the Swine flu in the midst...I heard that Cellcept can take about 4-months to really start to work, so hopefully by that time, your symptoms will have cleared up and you wont need the prednisone...One thing you've got on your side is physical activity (from what I've read in some of your previous posts). Other than the MG, you're probably pretty healthy, so that'll help with your defence against viruses...Also, try to eat lots of onions, garlic,--immune-boosting foods--yoghurt...all that good stuff, but not necessarilly together! lol ;)...I'd recommend a mask, that'd be a very good defence, but it'd probably be really awkward teaching with one! lol

Btw, from what i've read, and even from what my neuro. and surgeon have said, it's pretty common for remission to not happen very soon after surgery if you've had a tumor...My doc. said that it could take me 5-years to go into remission...Let's just hope that one-by-one, your symptoms subside until there are none left! But it does sound like you're one of the lucky ones who will be doing great very soon!

Good luck, girl! :):hug:

Hi,
Just wanted to check in as a fellow teacher. We go back to school on the 17 of August (far too soon!!). I'm a bit worried about the piggy flu-bug too, but I got a bad flu about a month ago so maybe it was that and now I'm invincible!! I haven;t had a thymectomy but I have heard it can take up to 3 years to get full benefit so ne patient. I am currently on azathioprine and pred to combat my symtoms (as well as LOADS of mestinon). I've been lucky and function pretty normally most of the time now. I feel pretty lucky because 18 months ago i couldn't wash my hair etc etc. I still get frustrated but lead a pretty average life.

I'm not sure what age you teach but if you are concerned about experiencing weakness in your classroom be honest with a responsible pupil - I had a kid (grade 4) that would take over reading aloud for me when my voice would falter and another who knew if I fell (which thankfully never happened) to go get another teacher. Now I'm teaching in a high school and always teach with my door open and everyone knows about my MG. I work with kids with disabilities so we are pretty open about limitations and the kids understand I can't run around, but can do lots of other cool stuff with them.

Hope your summer break was great (I know I'm enjoying every second of mine!).
~Kathy

I teach high school also, mainly 9th and 12th graders. My colleagues all know about my MG and so will most of the students. My son will be a 9th grader and I will have him for geometry, his friends know I have MG too. Hopefully he doesn't get teased too much about my droopy eye. My students last year were very understanding. They knew when my eye was drooped that I wasn't feeling the best and they handled it well. I also sometimes mix up my words, but usually catch myself. Last year I missed the first month of school recovering from my thymectomy, so I clued all of the kids in on what was happening. When I had flareups I also let them know and also warned them I may mix up my words and not to be afraid to call me out on that.

I have enjoyed my summer, I have taken it VERY EASY. That's why I am afraid to go back because I have been so laid back, so going back to work may be a real shock.

Enjoy your last week of summer!

I know that teachers have been shown to have more autoimmune diseases due to exposure to kids and germs but this is almost too funny. I didn't know so many of you were teachers. I am an art teacher, although I didn't teach very long. I went into marketing instead.

Why do neurologists want to think a thymectomy is a magic fix right away? Like the rest of these guys have said, it can take awhile to kick in and may not for some people. I hope it does for you - and fast! ;)

And you can't judge how you are doing by the antibody tests. Only a clinical exam and other tests like breathing tests.

I often wonder if the reason neurologists are so "weird" is that they want to be able to fix us but can't. Or maybe there are lots of other reasons they tend to be the way they are. :rolleyes:

My Dad was a teacher too, and Mom. I'm grateful I had teachers for parents.

Annie

Hi Tbarney!
 

Hey sweetie!:D

Is there ANY way you can get a break for a while? Just for a while? It sounds like you work for a GREAT school system, and you may need to just rest and relax - something that is really HARD to do when you have children @ home, so maybe a month or so @ home.........

The cooling vests are really awesome! You may want to bring in lots of fans - as I am typing this, I've got 6(!) on me and my ac set @ 59 - I know that sounds crazy, but once I get hot, my whole face swells to twice it's normal size and I can barely walk.....:(
You'd think that 60 mgs of pred, as well as 480 of mest would help a LITTLE more......

Take care honey!
Erin:D

Erin...Last nite I just couldn't seem to cool down. Found myself wishing I could jump into Lake George again. So I did the next best thing. I filled a tub with cold water (which you know in Texas is luke warm water this time of year).

Then I emptied my ice bin from the freezer into a pail - which I took to the tub. Into the tub I went. Added ice cubes to make the water 'spring' cold. Can't tell you how refreshing that was!! I splashed about for 1/2 and hour or more (til the ice cubes were melted -hehehe) and then had a positively wonderful rest of the evening.

Don't laugh - - I'm sure I'll have another ice bath or more before this summer's over!!

HI Sue!
 

I take COLD showers all the time now! And I keep a bag of ice on hand for when I get really, really hot! It's only my head, but I feel miserable!

Isn't it AMAZING what cold water can do?

Now if only we had a COOL front! What I wouldn't give for one! LOL

Love,
Erin:D

Erin, I am not bad now, so I am ready to go back. I have taken it easy most of the summer. So I don't need time off. Last year I had an agreement with supt. and principal that I may need to take some days off if I started feeling yukky. They were very understanding about it. I do have a lot of fans in my room, 6 I think, blowing around the hot air. LOL. About 1:45 pm everyday I move to a building with AC.

Congratulations on reaching your one year milestone! I've been on CellCept for 2 years now. When I first went on it, my doctor told me it would take at least 6 months to see any results. From what I've read about CellCept, it can take up to a year to experience the full benefit.

I hope things go great for you and you soon begin to experience remission from the thymectomy. It sounds like you have a great support system at your school and an understanding principal, which makes all the difference.

Best wishes,

Tbarney
So glad you asked about the H1N1, & flu shots, we are all immune comprimised here !
My Neuro lets me get the flu shot, because if I got the flu I would be much worse off. I have never had a problem with it either, where it is not a live vaccine. Everyones labs are different though, so we all need to be careful ! Doc knows best !
Take Care
Mary