Hi Erin!
First of all --- HAPPY BIRTHDAY!
YOU're just a baby, comparative speaking (I'm 52
) !
I guess we can just call this the wa wa thread!
Thanks for starting one - I wasn't brave enough before, but I'll take advantage of this venting thing now too!
Every now and then we have to "mourn" our past, I think. Then we can get it out of our system and gather ourselves to deal with our new, uncertain lives.
I thought I was done with all this stuff when I hit my remission last year - boy I was just starting to plan for more exercising and FUN this year! Then everything hit the fan and is getting worse than before. My MG is in remission (kinda), but my other problem is cranking and still undx'd.
I was just told that I can't go to work for an as yet undetermined amount of time! I'm trying to do some from home, but there's not alot I can do for them without going in. I feel so bad for my boss and coworkers that have been so compassionate with me.
My hubby still hasn't completely recovered from his head injury last May, and I can see this relapse of mine is taking a toll on him too. He is so tired and his eyes are starting to have that look they had last year. I'm scared that the stress and extra physical requirements on him may be setting him back. That I feel guilty about, though I know it's not my fault.
Sometimes the way this "other" condition is going this time I truely wonder if I will make it through this one. Death is not the scariest thing to me, but I need to get some things in order before I do have to face that, and I don't really have the energy to get things in order yet. It's stuff that my husband wouldn't have a clue what to do with (our taxes, finances and such), without some detailed information from me. Maybe the fear of leaving him with a mess to deal with is what will get me through this though.
My daughter just got here to work in our office for me, and she is visibly (she really isn't good at holding her tongue, either
) upset and in denial at me. She feels I'm just giving up this time, and stressing myself out worse with the information I've printed off about my possible secondary dx. I worry alot about her, even though she's 32. She's very emotionally dependent on me, and right now I'm having to be a little selfish. This is one of those things I really have no power over. I just hope she doesn't end up with any similar problems, but she does sometimes seam to show signs of autoimmune problems.
Erin, you're such a sweet person and so upbeat most of the time - no one can maintain that optimism all the time with this kind of change to your life- you need the time to cry, stomp, holler, cuss, whine, whatever.
We all know there are others worse off than we are, and sometimes that makes us feel guilty for getting "down", but the truth is, we have a right to mourn what once was every now and then. I'm trying now to remind myself how lucky I am in so many ways:
I got married young, had my children young so they're grown now, had my first grandchild with me a lot when I was very functional so she and I bonded very well and had lots and lots of fun!, I have a husband that has never not been here for me (many spouses run out when they're needed most), my children are loving and helpful, my inlaws, family and friends all understand my worries about my husband and offer their help for him, I live in a wonderful peaceful area, and I WILL HAVE A BETTER FUTURE than I am now to have fun - DARN IT - I WILL!!!!!
You will too - we all will.
I know, with your determination and personality, you will get to a better state with your MG and things will then be better. Patience is key because it does take time and you were SOOO bad by the time you got your dx that you have a farther distance to travel first than some.