I think that my posts will have more space between them now as I begin my doctoral program. I know it has been awhile and most will want an update on the progress of my lifestyle changes and health changes as they relate to my health concerns.
Let’s first talk about complicated allies.
When working with a chronic illness, a holistic team approach is the way to go. For those of you that hear holistic and think that the term is hocuspocus, it just means that we are looking at things from a whole person approach (mind, multiple body aspects, etc). Since moving to a new city and has a big medical school, things have changed a lot with my health team.
The allies on my team now:
-Primary Care Provider (PCP): For the first time, I really like my PCP. He listened to me, explored my concerns, didn’t talk over me, and most importantly, was open to my suggestions from research that I found. He ordered labs and sent my thyroid prescription to my pharmacy while I was still sitting there. Awesome! I walked out of the room into another room, got blood taken, and by the end of the day he emailed me with the results and a game plan. I can also email him directly. Say wha?!!!
-Gastro (GI) Doctor: I haven’t met with her yet. I am going to try to convince her with studies that I found, to out me on low dose Naltrexone. I am sure that my thoughts about her will depend on her willingness to try this with me, as it has worked with others and has little to no side effects. This medicine is for IBD symptoms and used for PSC for itching. While I don’t have itching, I don’t want to take the other medicines for IBD due to the side effects and let’s face it, I don’t like taking medicine much anyway.
Hepatologist (liver doctor): I think that she is nice and might be open to hearing what I have to say or try, but she isn’t convinced that I have PSC. I don’t want to have PSC, but after attended the PSC conference, I know that just checked the blood work isn’t enough to say that I don’t have PSC. My MRI and liver biopsy said that I have it. According to the doctors at the Cleveland Clinic, PSC doesn’t have any markers specific to it, so bloodwork is not the way to test for it and since you can have PSC and it not progress for a long time, MRIs aren’t even that great for it. Even biopsies may not show it, but someone could still have it. So with my MRI and biopsy showing it, I just wish she didn’t dismiss it so easily. Trying to get her to understand how testing works for PSC is difficult, because she is the one schooled in the liver, but PSC is so rare that most doctors don’t know much of anything about it and she said, “we don’t want you to have PSC.” As if I was fighting to keep it as part of my identity. I had to sit back and process that for awhile to see if that was the case, but it is more about misinformation being part of my healthcare. I don’t want to feel relief for the absence of a disease that I actually have due to misdiagnosis. The solution to this for me will be getting a second opinion at the #1 clinic in the US for PSC (Mayo in MN) and continuing my MRIs to track any progression
Dietitian: I have not met with my foodie doctor yet. I am excited to do so, but don’t want to be too hopeful. My partner met with someone awhile back and they couldn’t give much advice because we eat so healthy as it is. Maybe they will know more about how diet relates to the liver and IBD. Studies show that elimination diets don’t actually work. When I hear a doctor say that, I lose a little faith in them not being up to date on the research in their field.
So right now, I have all of these people on my team and some are more open and supportive and others are …complicated.