So I'm still chipping away at my to do list, now that my medical insurance has kicked in.
So far, I've seen my ENT, who is close to home. She then had me make an appointment to repeat my thyroid ultrasound, and given there were some changes, she reached out to the otolarynologist who performed my biopsy in 2019, and the otolarynologist's office reached out to me to schedule the biopsy. Given I'm not vaccinated yet, I pushed it off until November, hoping by then, things will be improving (regarding the pandemic). I hope I'm not being overly optimistic.
I set an appointment with my nephrologist for 4/5 and it's a video appointment. The day after my ultrasound, I went to the lab to give blood and urine samples for my 4/5 appointment.
While sitting in my car drinking coffee with the sunroof open (this is my default "Pandemic Outing"), I decided to check the NYS COVID site to see if there were any appointments available. I've done this multiple times a day for close to 50 days, and finally there was an availability. I sat in an online queue for 20 minutes, and arranged an appointment for my first shot on 4/28. The Maharajah is too healthy, lacks any comorbidities and has to wait a bit longer until he's eligible for the vaccine, which everyone should be vaccinated by the end of May.
The next day, my lab results were ready and after reading, I decided to just stop taking my iron supplement as my HCT, HGB, and RBC are high. I figure it can't hurt me too much by omitting this supplement for two weeks.
The day I decided to stop taking the supplement is also the same day I reached out to a local hematologist and scheduled an appointment for 3/24 for a consultation. She is a DO, and I hope she'll also become my internist.
My timeline has been thus:
In 2016, I stopped seeing my bariatric surgeon, as, after I complained about being depressed and lethargic, he wrote me an Rx for phentermine. Given my hypertension, I thought this was reckless. At the time, my iron panel was within normal parameters.
Later in 2016, I sought out a consultation with a hematologist in NYC, who ran a full panel of blood clotting tests and iron tests, and my iron panel was within normal parameters. (On an upnote, as a lay person, I let my mind be at ease as I was worrying my issue might be polycythemia vera--and luckily the hematologist ran a test for the JAK2 gene--and that test result was negative--so I stopped worrying about THAT. Luckily I keep thorough records of all my blood tests!)
After seeing my ReproEndoGuy 4x a year for close to 14 years, he decided to retire in December 2017, effectively having me fly without a net. This doctor knew me better than anyone, from a bio-chemical standpoint. 50+ years of clinical savvy + 14 years of visits. I worry I won't benefit from this level of care again.
2018 I sought out a rheumatologist, who ran all sorts of tests to see if I had any underlying auto-immune issues that might be causing my pain. He diagnosed me with enthesitis (which is the tendon/soft tissue issues but without having any of the test come up positive for RA etc). Iron panel was still within normal parameters.
End of 2019, my physiatrist referred me out to yet another rheumatologist, who was super thorough, and I had high hopes of several more years of being his patient; however, he retired in August 2020. He was the doctor who picked up on my iron panel being skewed, and noted "possible thessalemia minor" in his notes. A preliminary search on the topic shows that people CAN live with thessalemia minor, and it can be managed. So, that is somewhat reassuring--assuming that is even what my problem IS.
I am hoping that the iron issue is due to my gastric bypass + my adenomyosis. I am hoping that it will be a relatively easy "fix," of perhaps IV infusions to build up my iron stores, and if necessary, perhaps donating blood to lower the HCT, HGB, and RBC levels. I am hoping to feel wonderful after the infusions.
This hematologist is a DO, and I'm hoping that she won't recommend chemical blood thinners. If necessary, I'd like to stick with herbs and nutraceuticals instead.
I should have done this last year. But 2020 was a shit year (as it was for most people), and I put everything on hold, thinking I'd get around to this eventually when the pandemic ends, and there's no end in sight (yet). And then of course, mom died, and well that's a huge distraction.
All I know is, physically and psychically I feel like hot garbage, and I'd like to change that.
Today I had a phone consultation with a life coach, and I am considering taking a 10 week program with him. He has a focus on people who want to overcome narcissistic abuse. I'm hoping I will not be spinning my wheels again.
Admittedly, I have issues with feelings of abandonment or rejection, so for me to lose my ReproEndoGuy, then the thorough rheumatologist, and my previous therapist, each of these were huge set backs and losses in my support system.
Between the new hematologist and the new life coach/therapist, I'm putting my trust in other people's hands again. I don't like the uncertainty and vulnerability I am feeling right now.
Also, herein this blog post, I said the word "hoping" or "hope" one too many times. Hope is a dangerous thing, because if things do not play out as I'd desire, what I am left with is nothing but crushing disappointment, and sadly, it takes me too long to finally pull myself together and start all over again.
So, here I go, starting all over again. Perhaps I might be pleasantly surprised. My spin on the Tennyson quote goes thusly: "In the Spring a not-so-young Maven's fancy lightly turns to thoughts of an improved state of being."
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