Here in a different state I've started going to new docs and new relationships - but even now I'm seeing new specialists. And I'm scared. I'm on new meds and I'm going off olds ones. I'm possibly doing clin trials - and frankly I'm going to the University here for something and I FUCKING HATE UNIVERSITIES bc they simply cannot have good relationships the way a private practice can. I don't CARE if they are better doctors - There is NO WAY they look at me and SEE ME. They look at me and see a fucking jacked up patient with lists and lists of medicines. AND I FUCKING HATE IT. And all the worst practices in the world HAVE ALWAYS BEEN DONE AT A UNIVERSITY MEDICAL SETTING. I'm not telling people not to go there. And I'm sure some people will claim their lives have been saved there. And I'm sure some people will claim the best treatment. But for me- I LIKE PRIVTE DOCS bc I like to be seen as A HUMAN, not a fucking PROBLEM.
My latest issue is - I haven't had an echo in several years. And I am seeing a new specialist. My old GI doc is in Atlanta and she wanted me to see someone she recommended - someone she liked as an attending. But I'm afraid to go to him too. I pick people based on them, their staff, how they treat me... but NOW I have to go through the whole thing. The process of getting new specialists. I HATE THIS.
I'm high needs - even if I'm not an EMOTIONALLY NEEDY PATIENT. I am a high needs patient. I TRY NOT TO BE. But everything people hate about patients - I am. I have LISTS of meds (some I take daily and others I take prn). I have never had a "family practice" doctor that I just went to regularly for anything more than simple infections etc BECAUSE my shit is so complicated. I can tell they haven't heard of some of my diseases since med school. Or worse, my primary doc said to me, "I saw someone die of that in residency" when she was reading my chart. THANKS. THANKS SO FUCKING MUCH. I GET IT. I FUCKING GET IT. I KNOW SHIT CAN BLOW UP. I'll only go to her for infections and referrals. Thanks. I won't overwhelm her with REAL NEEDS.
Anyway- my primary docs often contradict what my specialist says. And even my specialists contradict each other. So I've worked HARD over the years to find ones that work good together even if they weren't THE BEST IN THEIR FIELD.
I realize YOU might say, "fuck that- I want the best." And fine- have them. But to me - "the best" on paper has always turned out to an egotistical asshole who overlooks my chart, doesn't listen me, and thinks I'm faking because I don't CRY when I'm in pain or I DO CRY because I'm afraid.
Anyway- I have to see several new specialists here and I'm afraid of 2 things. 1) they will think I'm faking and 2) they will say, "let's wait and see"... and to me this has always turned out badly for me... bc if I tell you my left arm is numb and hurting and I don't feel well - I'M NOT FUCKING LYING. I have acromegaly - I'm not sure if this has caused my heart to enlarge or it is simply making my soft tissue and ligaments hurt - like wrists and arms etc. And bc of lupus I get pericarditis and pleurisy all the time. AND I'M NOT SURE what's going on. I'm SORRY I'm not an expert enough to know. AND I'M SORRY that it is the complex nature of my health that they intersect. But one specialist here said, "I really think you need to see a cardiologist right away." But of course, I'm terrified the cardiologist will be a jerk.
I know from past experience that he's likely to run an ecg see normal and tell me to stop whining. And you know what- I'M NOT FUCKING WHINING IF I'M JUST REPORTING MY SYMPTOMS. I DONT WHINE.
So there. It is past abusive behaviors of doctors that so terrifies me. And a little of the unknown of the future. I don't know what I'm going to find. And I'm replacing so many specialists right now - ONLY the ones I can't keep - the ones I NEED here. I still fly back to Atlanta to see the ones I don't need to see regularly.
I miss my doctors in Atlanta. And I'm glad I've found a few good ones here. But I have to say- somedays - I really get tired of being THE NEEDY ONE. I really do. I wish I didn't HAVE to go through this. You'd think I'd be over the fear. But it is like starting school again - seeing a new doctor - knowing they have the power to be mean - and the power to tell me I'm a liar. And I KNOW FROM PAST EXPERIENCE IT HAPPENS. I HAPPENS ALL THE DAMN TIME.
If I could tell you how many times shitty doctors have told me "go - and sin no more" -- I fucking hate leaving the doctors I trust for new ones. And it is worse that I know the statistics and I also know that the more healthcare I get the more likely I AM to become one. And I FUCKING HATE IT.
Thanks for listening.