Health Update #5

At the end of August and through September, I was feeling much better--it was the longest stretch I’ve had. Then in October, some old symptoms returned and things felt like they were taking a turn for the worst. At the same time, my father-in-law took a bad fall and ended up in the hospital. It looked as if he was going to die within days, so my husband got on a plane immediately and flew across the country. His dad was able to leave the hospital for a rehabilitation center, then he went back to the hospital, then back to the rehab center, then to a nursing home, and is now in an assisted living facility. As you can imagine, this created an enormous amount of stress for everyone involved.

Last week, I was hit with severe vertigo that was triggered by lying down, followed by a lot of vomiting. I was able to get in to see my visceral therapist for an emergency appointment that day, and in less than 48 hours, my vertigo was gone (this was considered a very fast recovery). Apparently, he is one of the best in the country at treating vertigo, especially complicated cases. I am still dealing with the residual feeling of being off balance, so I’ve been sleeping upright on the couch and unable to drive for over a week. My medical team is “thrilled” by this development, as they believe the sudden onset of vertigo is a sign things are moving in the right direction. Who knew?

I have not been able to add new food. The dietician recommended I start with green olives since I’ve been able to tolerate olive oil. I ate two, plain ones and had a reaction, which felt devastating. With the holidays coming up, it’s extremely upsetting to know I’ll be home again, eating the same four foods I’ve been eating for over a year.

My recent blood work has shown significant improvements (and reversals) in the following conditions that were brought on by menopause and made worse by MCAS. I am no longer pre-diabetic, insulin-resistant, hypothyroid, or have non-alcoholic fatty liver disease, high cholesterol or elevated cortisol. These are considered huge wins.

However, my blood work did show I continue to have methylation issues, which impact everything. My ferritin continues to increase, which can be from menopause, infection, a genetic condition or the red meat I’ve had to eat three times a day. If it continues to increase, I will have to start donating blood to “dump” the iron. For someone who has tiny and difficult veins (blood work is always a nightmare) this is not something I want to have to do. I will also be getting genetic testing to see if I have Hereditary Hemochromatosis (HH).

My labs also showed high hematocrit, which means I’m not getting enough oxygen. My medical team is concerned about this leading to a heart attack or stroke. I have to do a sleep test, with a device I wear at home, to check for sleep apnea and other issues. If this test does show something is wrong, I will have to work with a specialist and do a sleep study to figure out if I need a CPAP machine or something else.

While I am incredibly grateful for the good news, it’s never just good news. There’s always a new problem or an existing one that has yet to improve. There are no words to explain how emotionally, mentally and physically exhausting this is.

My medical team told me I would experience a lot of loss during this illness, as well as PTSD, and unfortunately, that has been the case. Everything changes—some things overnight and some over time—which rips away at your identity, leaving you to feel lost at sea and like you don’t know who you are anymore. My career is gone, and I have no idea when and if I’ll ever work again (and what kind of work it will be). Significant amounts of money are gone from not being able to work and from our health insurance not covering my medical treatment.