MK,

I understand how you feel. I feel caught in the same trap, I can't seem to keep everything going and I know it is crashing down and I don't know how to make it better. I am slowly coming up with solutions but not fast enough.

Disability seems to be the only option since I just can't work full time (and I do love to work and want to work full time)...my savings account is dwindling and I don't know what else to do.

I do know we need to slow our lives down, MG won't allow us to keep up this fast living.

Look into disability through your work, that is a good idea.

I don't have any answers but I am trying to find a solution to the same problem. It is so stressful.

I wish you the best.

I just wanted to thank ALL of you for your very kind and supportive replies and for the great questions you asked and good advice you gave. I just finished working (it's midnight) so I didn't have the time to respond to all of your questions, etc. today, but I did want to say thank you because it really does mean a lot to me that you responded. You all helped me to feel less alone and that really helps. I'll try to answer some of your questions tomorrow if I get a chance after work. The one thing I can respond to now is that unfortunately I can't really go out on disability right now, as much as I would really like to do so. I'm on a contract which will be up in June, and I have good reason to believe that if stopped working, they would just not renew my contract, which they would have every legal right to do because at the end of a contract they can let you go without stating a reason and there's nothing you can do. I'm not ready to just stop working all together if there's a chance that with some other kind of treatment I could work more easily.

Anyway, I am truly grateful for your support! I have to go to bed now so I can start all over again tomorrow morning, but as I said, I'll try to get to your questions if I get a chance tomorrow.

MK

Hi MK,

I feel exhausted reading your posts. We struggle enough with this disease without having to cope with all that you are going through at the moment.
I have no answers regarding your insurance, as here in Australia we don't have to deal with this sort of thing, I'm thankful to say.
take care
Kate

Hey cowgirl,

Sorry you are having so many problems with your insurance company. I've had to go a few rounds with mine too over the years. I hope it all gets straightened out soon and you get the treatment you need. Hang in there, we're all pulling for you! Take care.

Hugs,
Pat

Oh sweetheart, my heart goes out to you....I know how you feel; afraid to go to sleep for fear of not waking up, feeling like you are going insane, being scared all of the time....it truly terrified me.

I think the recording is a HUGE thing - you do not need another thing to worry about - just set that up and it will be a huge weight lifted. I had the same system set up right after my surgery. Maybe LifeAlert? Something?

Do you have ANYONE who can come and help you? I've found that sleeping sitting UP helped my breathing quite a bit.

Don't worry about your house. Anyone who has a problem with dust bunnies when you are this sick can stick it!

You NEED to start focusing on YOU!

I don't mean to scare you, but it sounds like you are close to a crisis. I know. I've had 3.

As for the insurance BS - I don't even know what to say except I'm going through the same thing. I was billed $1,000 for a SINGLE lab draw...no, I'm not making this up - one lab draw.

Do you have any sick time saved up? Is there ANYONE who can stay with you? ANYONE? You NEED someone around 24/7. I know I'm stating the obvious, but we really don't realize how very weak we are until we start feeling better.

Please know that my thoughts and prayers are with you.

Love,
Erin