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Senior Member
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Join Date: Jul 2008
Location: San Antonio
Posts: 1,471
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Senior Member
Join Date: Jul 2008
Location: San Antonio
Posts: 1,471
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Unbelievable! Your FIL sounds like a real jack%^& - pardon my french.....I cannot believe how insensitive people can be - they think cuz' we "look" normal, we are and are just being lazy. I've grown apart from my own baby sis cuz' she hasn't shown that she really cares at all and says my doctor gives me the right to be lazy - right! LIke I would live like this if I could.....My life has been forever altered by a disease that the medical community really knows nothing about, I can barely get off the sofa - yeah, this is what I want. Or she claims that I'm trying to be the "favorite" - it breaks my hear b/c we were always so close, but what can you do? I really wish you lived here - I swear by my neuro - he's ****, but really seems to care. It's such a shame that more doctors don't - -especially since we need them to keep us alive and (somewhat) mobile . You have had 12 surgeries? Good Lord! If you don't mind my asking, what for? Is one of them a thymectomy? I kept hoping when I got mine it would *magically* cure me, but nothing yet..... Today I started out strong, but started to feel really bad during the day and still feel a little rough - maybe tomorrow will be better......I've got to say, you are one of the bravest people I have ever talked to. It is amazing that with all you've gone through you are still so upbeat. I don't know if I could do that, and I truly admire you for it - though it's awful that you've had to deal with so much I just don't know how you do it. I was a nervous wreck with my one surgery, so the thought of 12 makes me sick to my stomach. And the choking! That is another big fear of mine. I choked when I was a little girl and refused to eat for a long time - so long my parent's worried and I lost a lot of weight. I finally got over it, but it took about a month - a long time for a 5 yr. old........You are not letting anyone down - you are being let down:by your doc, your FIL, and anyone who doesn't take care of you - remember that! I meet with my endo 2morrow - wish me luck. My body is still *out of whack* - at least for now..... Erin
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Originally Posted by rumpled
My neuro moved to Florida to take a new job... my GP alas, is one of those who is in and out in seconds but will run tests I want or give meds I want - I can be my own doc. He had a nice caring doc with him that was helpful but he left and frankly, I am just tired of looking for doctors (as again, I search).
I too feel like I let people down and my FIL thinks I am lazy as he thinks I look just fine! You would think that after 12 operations (one brain surgery) he would get the hint but no, he just calls and asks if I am better like it is going to change in a day - it is so aggravating. I have someone help clean, my husband helps cook or we order out or use the microwave if I don't cook. I got reachers, sit as much as I can and all that. I limit what I do or I have forced naps - my body will just shut off and I have to sleep.
The choking is no fun but they tell me that since I do not lose weight, it is not bad... so whatever you do - never get endocrine crud with this as my weight has never been dependent on my intake but far be my real body to interfere with their suppositions.
Hang in there and like Janet said the IVIG takes time so hopefully you will find it makes a difference! It also does seem to come and go so it never seems to stay the same for long - for good or bad.
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Erin
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