Gi doc visit update/ primary visit

[JennaShi]

Hello everyone,

I hope you’re all doing well. It’s Monday and A had her birthday on Saturday; she turned 11!

I’m jumping in here on a high note. Just got off the phone with my GI doc. She addressed my anemia and my symptoms:

Recommended psyllium husk for more solid bowels and a osmotic laxative for motility.

I am to schedule a upper endoscopy and a colonoscopy due to the chronic anemia and multiple biopsies to look for AAIG. She seems on top of it and has a plan and I’m excited to finally move forward in this department and nervous that maybe nothing will explain my symptoms but that is something I’m going to work on.

Primary care Doc, is great. Thinks the bump on my chest might be due to my connective tissue issue. Wants to do a mri of my rib and chest to see if we can learn more.

Sorry I spazzd in my last post about my xray. I have ptsd and anxiety and sometimes they get the best of me. I have normal o2 levels but its ab effort to take deep breaths; that and the bump on my chest, and protruding rib is a bit worrisome. I keep telling myself I’m going to let things go if nothing is found but it’s honestly hard..

i keep feeling like I need to prove myself with my rheumy (no cause on her part) because my Lupus is inactive according to labs and I still have pain and things, but truly she’s fine with where I’m at and I really should be glad and content we’re treating it early. I’m just used to fighting and having to prove my symptoms through labs and things. I am seen and heard and treated well.

Saw my neuro the other day too, she said when the Gabapentin doesn’t work and neuropathy is worse, I’m having a flare. This can be due to alot of other things too. She didn’t say anything to my question about the symptoms I had as a child in regards to connective tissue but I’m sure she was curious also about why I have an HSD diagnosis. I did email the geneticist regarding my bump and rib in regards to connective tissue issue, but have yet to hear back. I guess we won’t know everything about what caused what with our health, because these things are still being learned about and every doc has a different opinion and perspective.

But I’ve got most of my answers and that’s alot more than where I was in 2019!

[DRunnerchick]

Remember to breathe. The answers will come in due time. It’s the waiting that’s hard. The brain always fills in the blanks as it sees fit until we actually have the “real” answers”. Don’t let it get too carried away. Trust your rheumy’s plan and process. She hears you! 💐🍀✨

D🏃🏽‍♀️

[JennaShi in reply to DRunnerchick]

Thank you and I agree, we do tend to do this quite a bit (from a personal perspective; it’s easy to let fear set in and t try and figure it out ourselves). She’s pretty practical and bright, but I do hope for more communication in the future. It’s hard to know what to ask if you don’t know what you you should be asking 😅.

[Jmiller623]

Sounds like your docs have you on the right track. Take one step at a time. You may want to find a counselor to talk to about of this. I found family and friends can only take so much when I parse through what is what in symptoms. I find LCSW to be the best. Listeners, not prescribers.

I hope you find some relief soon Jenna. Spazz all you want. That’s what the forum is for.

[JennaShi in reply to Jmiller623]

Thank you and I agree. I was telling D above how easy it is to let fear set in. Yes, I remember you telling me and so agree; there’s a need for a healthy boundary line with sharing, I think? I’m still learning this and also learning some people and family could care less and expect you to move on and be normal etc. tangent there for a min. Yes, I do see someone but am not sure she’s the right fit and will be looking for someone else.

Thank you, it’s nice to be able to talk with you all as I feel that we understand each other alot better 💜