I feel incredibly hopeless.

I want to thank everyone for your awesome words of encouragement & I’m sorry we have all been brought here under such poor circumstances, but I’m glad there is a community to make us feel less alone.

Many asked about Lyme & I was tested for Lyme Disease which was negative.

Sadly, my PCP fired me as a patient a few weeks ago because she found out I asked for a second opinion. (This was because she had told me to try Mayo Clinic because she was out of ideas even though she put forth zero effort in even finding a diagnosis, but I digress)
Apparently both doctors are under the same network & she was alerted to it somehow. All I was told was that she is severing ties with me because there were “negative connotations” in the notes from the other doctor & because of that, she no longer feels she can be my doctor. I was blindsided by this but more so just really confused because I KNOW I did not say a single negative thing about her during my visit. I mean, I’m not a 16 year old for crying out loud.

You see, having tattoos & being involved in the tattoo world for so long, I heard a long time ago from an artist that you NEVER speak badly about an artist to another artist because it only makes YOU look untrustworthy and difficult to work with. Some artists will not even work with you if you have that sort of behavior, which I don’t blame them. They just don’t put up with putting other artists down.
Anyways, that little tidbit has always stuck with me & I’ve since applied it to every other professional out there, including physicians. I simply would NEVER talk badly about a physician to another physician. Period.

I was able to get ahold of the notes from the visit & it only confirmed my suspicions that she was making it up. I truly believe she was just ready to cut ties with me because I would always request new testing & asked questions.

So, now I’m without a PCP with a chronic illness. I’m heartbroken, I’m offended, & honestly my feelings are hurt & I don’t like my character being questioned. But….whats done is done and I’m sure it was time for a new PCP anyways so maybe it’s a blessing in disguise. I’m not giving up yet. If anything I’ll survive purely out of spite. Lol.

Thank you all so very much for your kindness. I’m truly in awe of the kindness I’ve seen in this little community of complete strangers on the internet.

-🖤Morgan

Wow, thank you for all of your suggestions. I wasn’t expecting anyone to respond to be honest. To answer some of your questions, I did have 2 root canals I think within about a year of the onset. I do recall around that time I also had an abscessed tooth that I had to get surgically removed. Oh & I’ve got a metal filling that I’ve had for maybe 20 years or so. I do remember watching that documentary called “Root Cause” or something like that & I was shocked to say the least. Definitely something I need to read up on.

I was tested for Lyme which came back negative but I can’t remember the last time I was outside where I could have gotten bit, so I didn’t think it’d be that anyways.

Since I work from home now, I’m here 24/7 & to be honest I have no idea if there’s mold. I’m not quite sure how I’d go about checking in to that but it’s not a bad idea. I live in an apartment complex that was built maybe…10 years ago? Idk.

I’ve seen a rheumatologist & the guy was probably one of the most unprofessional doctors I’ve come across. I had been referred there by my PCP (by my request) & there’s no intake paperwork, I get in there & he has no file or anything on me, & he asks why I’m there & if I’ve had any bloodwork done….he couldn’t even bother to look at the referral with my paperwork & labs…I tried explaining it all to him & he literally doesn’t touch me or anything, just immediately asks “have you heard of Fibromyalgia?”….. I was so mad because he didn’t even attempt to dig a little deeper or order additional tests, he just said my labs sound fine & there’s nothing he can do for me. The labs I had done were just your basic complete panel that you get done yearly. So the rheumatologist was a bust & I won’t be going back to that dude again.

Since day one I’ve really felt it has to do with either my thyroid or some sort of autoimmune disease. My father has hypothyroidism. But when the labs are normal, a lot of doctors don’t want to order more specific tests for thyroid like TPO or whatever else there might be. Like….why not just do it to humor me? It’s not going to hurt them in any way.

I truly don’t feel like what I have is anything super rare, I think we just don’t have competent doctors here & I hate to say that but I’ve had repeated bad experiences. I get it, they probably see a LOT of patients who are actually hypochondriacs. I know that has to be incredibly annoying. But being dismissive to each person who presents with a condition that isn’t your run of the mill common ailment, can be detrimental to one patient like myself with a legit health concern.

It’s just frustrating & it can be daunting trying to find help when you’re so limited on funds & living in a state with no resources. I’d LOVE to go to Mayo or Vanderbilt or UDN but it’s just not feasible. To add to my pity party, it doesn’t help that I live alone, I’m single with no kids, no family that I speak to, & no close friends anymore.

I just wish I had access to more caring doctors. It breaks my heart that the people we go to when we are at our worst, who we depend on to have our best interest at heart & to hopefully help us get better, have been the people with the least amount of compassion. I know there are still good caring doctors & nurses out there, they’re just more of a rarity now.

That’s the end of my little rant. Thank you again so much for all of your help. You’ve given me more avenues to explore which is great. 🖤

I'm also in same boat my family don't seem to understand either 😞X stay strong

To @morganjane, see the HRSA community health centers as a possible source of care (https://bphc.hrsa.gov/about-health-centers).

To @cekkk, I do not think that it is an accurate statement that government has a goal to destroy medicine. I am fairly old myself (mid-60s) and that is not what I have seen. For an even longer historical perspective I can recommend a book called "The Book of Charlie: Wisdom from the Remarkable American Life of a 109-Year-Old-Man," by David Von Drehle. He was a doctor in the 1920s and beyond. (Your public library may have it.) Among other things, he saw how medicine had changed since then.

It is also helpful to have a global perspective to see how other countries handle medical care. The British, for example, have the National Health Service.

I can assure you that no one in the civil service gets up in the morning and thinks about anything other than how to do a good job for the American people. What the political appointees are thinking, I can't say.

I am a civil servant myself. My specialty is IT (computers). There is a lot of IT in government, and my job is basically to do oversight of IT contractors to make sure that they do what they are supposed to do, and to make sure that the American people get good value for their tax money.

That value includes benefits for recipients of Medicare, Medicaid, and Social Security. It also includes the health research done by the National Institutes of Health, a couple of dozen NCI-funded Cancer Centers that do both research and treatment, and the HRSA community health centers.

I have AML, and I recently had a relapse. I am getting chemotherapy for it. I am working part-time because that is all I have the energy for right now. I considered retiring because, quite frankly, my expected lifespan is so short that having enough money to live for the rest of my life may not be a problem. I talked about this with a coworker because I was looking for meaning in my remaining life . She said "Tim, what do we do here? It's healthcare." That reminded me that although I don't see patients, my IT work does contribute to getting people healthcare. My work provides meaning to my life now, and that is why I continue it.

My coworkers and I are serious about our jobs. It's intense. For example, I have a conference call set up with people next Friday (the Friday before New Year's) in which we will be talking about some particulars of an IT contract coming up. The contract is about software testing of an IT system. The system is needed to provide health care to millions of people.

To add to my already considerable experience in the IT field, and to prepare myself to deal with the software testing contractors, in the past few weeks I marshalled my energy and read about 150 pages of difficult, technical papers about testing a large-scale System of Systems. What is possible? How do you do it? What is the best methodology to use? Now I'll be able to judge which testing contractor can do the job and provide the best value for the American people.

Here I am with a very bad cancer, receiving treatment, and I'm putting my energy into keeping IT systems running so that a major part of the American healthcare system can continue to function. That's the kind of intensity and devotion that I see among my coworkers every day. If I died tomorrow, they would continue, but I very much want to do my part, and so do they.

If you want to better understand the American healthcare system I can recommend a source that my boss three levels above me recommended, which is the research reports by the Kaiser Family Foundation. If you want to know what efforts are underway to improve the American healthcare system, you can take a look at the new models produced by the CMS/CMMI innovation center.