This week I met my new primary care doctor, whom I really like. She gave me hydrocodone to help the pain. I gave her the run down of the story (AKA the super condensed version of the blog), and she seemed happy to help, even with the disability stuff.
I stopped all food trials except some potato soup (water and potatoes - that's it), some rice, and some rice chex and applesauce to get the new steroids down. I've been drinking more formula trying to put some weight back on and get more protein - I hate that my hair is still coming out in clumps. I've never been more grateful to have a lot of it. Most people can't tell, but I can feel how thin it is and see how thin it is. Plus, I'm the one that cleans up the hair I leave behind, so I'm very aware.
My colonscopy came back clean. The doctor said besides the inflammation in my stomach, she didn't see any signs of eosinophils (my labs I got today confirmed that too). So that was good news. On a bad note, she told me to go back on psych meds and if I had pain, see a pain specialist. And I should go back on all the psych meds as I my stomach was better with them; I reminded her I had SEVERE hypoglycemia with the meds and the depression worsened, which is why I got off of them. She didn't care. I was so ready to burst out at her, she can be so unprofessional and just ready to dump you off on someone else. I had steroid psychosis, I have EoG, and I have abdominal pain now - I would be crazy to have this all in my head. I have proof of all of it. With 2 kids and a husband, and being such a burden on my family, I wouldn't have just made all of this up. Who would I make it up for? I follow my instinct, and have been grateful that God has led me to where we are.
So, now what with the pain? We're back to the gallbladder issue, and meeting with the surgeon Monday. I'm still having pain when I eat/drink, and I've read and talked to people that have had similar problems. Now that I can rely on teh formula and have the EoG under control, it seems like a good option to finally get it removed and take that out. Of course the GI doctor - I won't mention her name; it maddens me just thinking about her - said there was no way that the gall bladder to cause that pain. But she was also the one that told me that steroids can't cause depression and the mental reactions I had on the high doses, so credibility isn't so good.
We're off to see the surgeon on Monday, and I continue to take the hydrocodone to hold myself over. I think it's the best option for now, and potentially the surgeon can do some exploratory surgery when she's doing the gall bladder removal. Some lab work came back today, and 2 markers showed signs of inflammation. I know my stomach is inflammed, so that could be it, but something has caused more damage since last December on a diet of formula and food trials of basic least-hypoallergenic vegetables. It doesn't make since I would be in this condition based on this diet.
My brother had an MRI today, and we're awaiting his results. He seems to be getting better with the new GVHD treatment and getting off some of his meds too. It's hard to believe he'll be 4 years cancer free next month. I'm so grateful he's alive; I love his so much. I wish my stem cells would've been better and he wouldn't have had to endure the multitude of problems over these last 4 years, but I'm glad he's here and he's still fighting.
My parents and Adam have been a blessing helping me through this, and being with the kids. I try to spend as much time with all of them, and smile at the kids. They bring such joy to my life. I just want to get better. More news next week!
No comments:
Post a Comment