To Do List Revisited, 3/29/21 Hematology + Physiatry + A Setback

So, it's been about 12 days since my last update regarding my To Do List items, and I have already gotten the ball rolling. 

3/22/21 was a visit with my physiatrist, after a year of putting all things muskuloskeletal on hold due to the pandemic--hard to believe her baby is now over a year old. Issues addressed and a preliminary pain plan has been set up. At the end of this week, I go in for an MRI. After that, we will do a cortisone shot in my hip, which I believe is just for diagnostic purposes. And after that, I am biting the bullet and paying out of pocket for a PRP injection in the hip. It'll be unpleasant, my doc sufficiently warned me; however, speaking of unpleasant--I haven't been able to sleep on my right side since 2012 after sleeping on an aryuvedic bed which was so hard, sleeping on a concrete slab probably would have been more comfortable.

3/24/21 was a visit with a new hematologist. I did my due diligence to find someone capable and close to home, in case I needed treatments or infusions. After making me wait close to an hour after arrival, and a weigh in, my first question to the hematologist was, "You aren't planning on retiring anytime soon are you?" The grimace on her face told me everything I needed to know. Her first words were, "No one told you I was leaving here mid-May, when you made your appointment?" 

Even though my hopes were dashed of establishing a rapport with this doctor, I was hell bent on getting all my current questions answered. I prattled off the timeline of when I started feeling awful in 2016 (see previous blog posts wherein I detailed that timeline). I concluded the timeline with "And here I am--and now you know why the first question I asked was whether you'd be sticking around for a while."

I did my due diligence and provided her with about 40 PDFs of all related blood work, and hope that she can compare whatever new labs she ordered against the old.

 

I informed her that after the labs my nephrologist ran on 3/10, I stopped taking my iron supplement on 3/11 when I realized my RBC, HCT, and HGB were still elevated and given my Factor Five Leiden Mutation I didn't want to further risk having a clot or a stroke. She confirmed my instincts were good. 

I let her know about my bariatric surgery in 2011 and my adenomyosis, and those might be what's driving the anemia (or whatever blood issue this actually IS); however, I did inquire if the kidneys could be a factor, and I mentioned something about how I don't think I've ever had my EPO/erythropoeitin levels checked. 

I then mentioned my thyroid nodules, despite having normal thyroid panels, I keep having this issue with my thyroid nodules, and I wondered could my anemia be driving the nodules, or if there were something about the thyroid that could be driving the anemia.

Blood was drawn and a urine sample provided, and a follow up is scheduled for the end of this week, and hopefully we'll have some idea of what's going on and how to proceed. 

The hematologist did mention it might be beneficial for me to have a follow up sleep study to see if my CPAP needs to be adjusted, as that might be skewing the HCT, HGB and RBC levels. So, I have to reach out to my ENT at some point about this.

So--full disclosure: After my physiatrist appointment (wherein I refused to get on the scale), I came home and weighed myself. I have been dreading this, and I knew it was going to be bad. I was ashamed that I managed to gain about 18 lbs since the start of the pandemic.  I know I'm not alone in this, as many people have gained weight due to isolating during the pandemic. The lack of activity, as well as my crazy sleep schedule (truly, it's more like a LACK of a sleep schedule!) are contributing to this. 

For well over a year, my sleep pattern continued to worsen, to the point where there were some days I was dragging my ass to bed by 2, 3, or 4 a.m. Mind you, with my reactive hypoglycemia, this also meant the longer I am awake, the more meals (no matter how mini they were) I ate. More meals + less activity + zero restorative sleep = an endless cycle.

So that was last Monday. Tuesday evening I purchased some chicken soup I love which is 160 cal a can, and I bought a bottle of Glucomannan, hoping the supplement + hot liquids will make me feel fuller longer, especially after dinner which usually is a problem for me these days. I also ordered some Magic Spoon cereal as something crunchy for a snack and a change of pace. The macros on it were very good, and I figure it could be a good inclusion in my diet.

By last Wednesday for my hematology appointment, I had managed to dump 2 lbs off. By this morning, it's now a total of 3 lbs I've dumped off in a week, just making these adjustments (and full full disclosure, I haven't really been super applying myself).

Additionally, I got serious about getting myself to bed by 12:30 each night, which I managed to do every night except Saturday and Sunday night. So tonight I'll tighten things back down and try to get to bed by 12:30 again. 

Even getting 7-8 hours of sleep a night + using my CPAP isn't making me feel any more refreshed, but at least I'm not eating, so that's a win. 

As demoralizing as the set back of gaining that weight, at least I was brave enough to get on the scale to see what the number was. Hopefully it'll be a bit easier to get back on track and dump off the remaining 15 lbs, which will bring me back to my status quo; however, once I get there, I want to try to keep at it to get my numbers back under 200. Things could have been worse. I could have continued to do the ostrich routine of denial and putting my head in the sand (like mom used to do) until things got so wildly out of control where I'd probably need another surgical intervention to get me back on track. 

I also have been trying to get back on my bike every day--eventually this habit will be re-established to the point where I won't even think about it or question it (or worse, negotiate with myself into NOT getting on the bike). This morning I was pressed for time, but I managed 15 minutes before I had to shower up and get out of the house to head to the office. 15 minutes is better than ZERO. 

Tomorrow, I'll try to do better.

To Do List Revisited, 3/17/2021

 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."