Hi Everyone:

I haven't been able to post for a couple of weeks due to an exacerbation but have been trying to keep up with everyone the best I can and have been thinking of you. Welcome to the new folks. I look forward to getting to know you.

The last I posted, my husband and I had gone to our daughters in Virginia (an 8 hour drive) for our grandson's first birthday. We were only there 4 days and didn't run around or do a lot while there. When we got back home, I crashed so badly and was basically bed-ridden for over a week. I'm just now beginning to get back on my feet some with extra IVIG's and increased Mestinon, but still not doing that great.

However, I've also been feeling pretty overwhelmed with my work situation (what else is new?). I have posted before about going on disability and then finding out I won't get a paycheck for 3 months (between short-term and long-term disability), which is really bad timing financially as our daughter is getting married Sept. 12th. I was also told by my boss this past week that I had to go back to work (at least a few hours each week) because of the FMLA -family and medical leave act, or be terminated. So, I worked 6 hours this week, which was rough, but I'm not ready to give up my job yet. I'm still hoping I can work part-time at some point. Anyway, this has caused a lot of stress and worry, too. I have trouble sleeping just trying to figure out how to manage it all and make the right decisions. My husband tells me to just let it go, everything will work out. But it's hard.

I don't know if it was the travel or stress or combination of the two that has made me so much worse. Have any of you experienced an exacerbation of symptoms from traveling or trying to manage stress/worry? It doesn't seem like these two things should make me this much worse, but, then again, I tend to think that about everything.

Thanks for any thoughts or experience you have on this subject. I hope each of you has a good beginning to the week on Monday. Erin, if you read this, I've been thinking of and praying for you. I hope you're okay.

Thanks,

Hi Shar!

Yes, traveling and stress makes MG much, much worse! I speak from experience. When I visited my grandparent's a while back I was bedridden fro a week. It was awful!

The best thing for you know is to try and take it ez! God is watching over you and will sort things out. I know it's easier said than done, but you don't need to have a crisis - it's just not worth it! I promise you that!

Do you take anything for anxiety? I take Paxil and it has worked wonders. I also take xanax for panic attacks. They make things much more bearable!

Again, God is in control. There isn't anything you can do about the job situation. You need to worry about YOU for now!

Love,
Erin

Hi Shar
Traveling definitely makes me worse. Much worse. And if you add all the stress you are going through, I am not surprised you crashed. I would bet it was the combo of both. But I have crashed after long car rides or all day in the car.

I really hope your job problems work out. I am not able to work. It takes everything I have to take care of me most of the time and the rest I use to take car of my 3 boys. I applied for disability again recently. Financially I have to rely on my mom and bf. I really hate it, so I hope they say yes on disability this time. I have learned recently that I really just have to let go. This is really hard as I am a control freak. But I am learning to have more faith.

I hope everything works out for you. I hope you have a strong week!
Hugs
Carrie

Shar, yes my fellow MGer, travel and stress makes us worse as does the heat. Yesterday I rested all day because I knew I had to go food shopping and just the hour it took me to shop wore me down, I got home and hubby had to unload the bags and I had to sit for an hour before I could put things away. MG sucks, its that simple, as for you leaving work, I know how hard that is, school starts back up here in 2 weeks and when at the store yesterday I ran into one of the teachers and when he left tears actually fell down my cheeks because I realized finally, that I was not returning to work but my family needs me around, alive more then the school needs me. Priorities, thats what you need to think of. I wish you the best and remember we all here know what you are going through.

You need to apply for Social Security Disability now and you will probably get it. I applied in Jan. 2007 and received my first check on April 2007 and I have never had IVIG or plasmapheresis. I documented explicity how many feet I could walk,etc and becoming short of breath with the slightest exertion. My neurologist documented very good too. I applied on-line which is the easiest way. Good Luck

hi shar,
stress at work is what makes my MG symptoms really worse!!! travelling especially when there is heat or jet lung are also major threats to me.
As i wrote to my message the other day in order to control my stress at work and generally i believe my neuro suggested me to take an antidepressant drug in small doses, apart from mestinon.... maybe you could ask your doc....

i wish you the best...

Hey Sharman,

Yes indeed stress and traveling make my MG worse. Combining the two can land me on the couch for a few days. After our last trip to visit our son 3,000 miles away and a return flight from hell, it took me a week to recoup. Hope things start getting better for you. Take care.

Hugs,
Pat

Thank you for all your words of wisdom and comfort. I've never taken anything for anxiety or anti-depressants. I would almost be afraid to try because of the extreme reactions I have to meds. For example, I can't take any kind of pain meds no matter how badly I might need them. I even had my four children without taking anything at all. Once I took 1/8 of some type of anxiety medicine and it made me so sick and feeling completely doped up for 2 days. I know that sounds crazy but it's really that extreme.

I don't know why I've never thought of traveling making things worse. It's only since my MG got so much worse in April that I've found everything effects me so much more. I used to have trouble keeping going, but I at least could force myself to keep going. Now, I can't do that anymore. It is true that I'm finding that every choice I make has some effect on my ability to to stay stable and at least partly functional.

I'm beginning to get it through my stubborn head that I have to really go through each day with the "I have a dollar to spend for the entire day - how can I make it last all day" principal. It's hard to train yourself to live that way, knowing that every choice you make, every action you take, is part of that small dollar bill.

Well, the good news is that I am getting it. The bad news is that we have another trip planned Aug 19th for a week to see our son in San Diego, completely across the country from me. Then, it's back home to our daughter's wedding on Sept 12th. I think I'm in trouble here! Now I understand why my daughter (who is a nurse) was upset with me for scheduling a trip before the wedding. Sometimes I wonder how I can be so slow to learn. I mean, I should know these things. In my mind, I was thinking that this trip would give me a break before the wedding.

I hope you all have a good rest of the week.

Take care,

Hey sweetie! How are you today? Are you feeling stronger?
I hope so!

You sound like one of my family members - she cannot take ANYTHING for pain - the last time she was in ths hosp, she kept accidently hitting the morphine button and it made her sick as a dog....I on the other hand can take anything under the sun! LOL! I don't know which is worse!

You are not being stubborn! You are trying to make the best of a bad situation. Who doesn't want to visit family? I go through that every day. We ALL want our "normal" lives back - that is prefectly normal..who wants to be a shut in?

I think it is amazing that you are not giving in to MG - and letting it make you become bitter or paralyzed with fear. I was soooo scared after my surgery that I couldn't stand to be alone - EVER! It took a few months, but I was albe to get over it!

If you aren't able to make both trips, don't worry! It sounds like you have a wonderful, supportive family.........They just want you to be happy and HEALTHY!

Have a GREAt day!

Love,
Erin