Comments on: Trying To Stay Positive http://brainfoggles.com/2008/06/05/trying-to-stay-positive Tween Parenting Blog Thu, 24 May 2012 00:40:01 +0000 hourly 1 http://wordpress.org/?v=3.3.2 By: Katie http://brainfoggles.com/2008/06/05/trying-to-stay-positive#comment-2588 Katie Sun, 29 Jun 2008 21:48:59 +0000 http://shawnsbidness.com/blog/?p=545#comment-2588 I was diagnosed with MG in Feb 08. That was after having had respiratory difficulty that hospitalized me in Dec. 07. I am being attended by the VA. I don't feel they have much concern for my condition. I had an exacerbation last week and systematically dismissed with antibiotics. It seems my thymus gland was normal on the CT scan, but my spleen and pancreas are enlarged and I have a "fatty liver." Three days after that visit I was sent in to see the neurologist, a funny looking little Italian guy with a very thick accent whom I could barely understand. He was just as dismissive to me as the GP. All I could gather from him was something about a consult at the Mayo Clinic. Worse than that, the only question his nurse had for me was, "How much alcohol have you consumed in the past three days?" Anyone with half a brain knows a person with MG cannot drink alcohol. No medication changes were ordered and I'm getting weaker by the day. I did receive a letter in the mail stating they had set up a PFT in September. I hope I don't stop breathing before then as they won't have anything to test. Anyone else have such unconcerned "professionals" overseeing your care? I was diagnosed with MG in Feb 08. That was after having had respiratory difficulty that hospitalized me in Dec. 07. I am being attended by the VA. I don’t feel they have much concern for my condition. I had an exacerbation last week and systematically dismissed with antibiotics. It seems my thymus gland was normal on the CT scan, but my spleen and pancreas are enlarged and I have a “fatty liver.” Three days after that visit I was sent in to see the neurologist, a funny looking little Italian guy with a very thick accent whom I could barely understand. He was just as dismissive to me as the GP. All I could gather from him was something about a consult at the Mayo Clinic. Worse than that, the only question his nurse had for me was, “How much alcohol have you consumed in the past three days?” Anyone with half a brain knows a person with MG cannot drink alcohol. No medication changes were ordered and I’m getting weaker by the day. I did receive a letter in the mail stating they had set up a PFT in September. I hope I don’t stop breathing before then as they won’t have anything to test. Anyone else have such unconcerned “professionals” overseeing your care?

]]> By: Annabelle http://brainfoggles.com/2008/06/05/trying-to-stay-positive#comment-2432 Annabelle Fri, 06 Jun 2008 04:32:23 +0000 http://shawnsbidness.com/blog/?p=545#comment-2432 I'm so sorry you're having so much difficulty right now. With my chronic illness, I seem to go through phases of denial, saddness, grief, and acceptance. I think I'm in the grief stage - grief from loosing the life I once had. What you're feeling is totally normal. But I do agree with your case worker - see your PCP - you may need an antidepressant. Good luck to you and I'll keep track of your progress through Twitter. Annabelle I’m so sorry you’re having so much difficulty right now. With my chronic illness, I seem to go through phases of denial, saddness, grief, and acceptance. I think I’m in the grief stage – grief from loosing the life I once had.

What you’re feeling is totally normal. But I do agree with your case worker – see your PCP – you may need an antidepressant.

Good luck to you and I’ll keep track of your progress through Twitter.

Annabelle

]]>