Tidbits of Info

An update

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Well, I left you all hanging in the balances of dark and gloomy two weeks ago, didn't I?

That wasn't very nice of me.

Truth is, I didn't know what to say last week and I really don't know what to say this week either. So instead of a topic based post, I wanted to give you an update.

Two weeks ago, when my doctor called to inform me of the results of my most recent blood work, to analyze where my hormone levels were in order to slowly subside hormone therapy, she shockingly stated that my testosterone levels had significantly increased rather than the anticipated decrease. As a result, she was utterly confused and unable to provide a path moving forward under her direct care, recommending I go back to an endocrinologist. I felt immediately defeated. Immediately disappointed and back to a point of utter distrust in my body's ability to just be operating smoothly.

Previous to the last round of blood work, I had a period of time where my health began to take a more positive spin; hope was building. I finally felt confident in the care of my doctor, physical therapy was progressing and the medicine was restorative both physically and emotionally but BOOM.... literally out of nowhere...

In December of 2020, I began to notice bigger emotions, acne, extreme fatigue, hair loss, comprehension and retention fogginess, lack of desire, dryness, numb to senses and therefore arousal, nil motivation, swollen, bloated, etc.... you get the picture... and honestly, I thought this was good in the sense that my body had learned to make its own hormones properly and therefore, I no longer needed to be on the medicine. I was balanced naturally, and the use of the medicine was overproducing hormones my body didn't need.

I left all of these things play out until my next appointment in Washington, DC (April 2021), knowing she would complete a round of blood work. After discussing the progress in PT, the symptoms I had been experiencing and a routine blood test, which showed moderately high testosterone, my doctor significantly reduced my meds...GREAT... and ordered a second round of blood work to double check levels as I was coming off of them. In theory, my symptoms should have begun to subside since I no longer was "overproducing."

Yet here she was, on the phone, miffed and sending me right back to Wellspan endocrinology. The very same place I came running from due to their inability to comprehend, recreate, diagnose or believe the pain I experience. My free standing testosterone levels went from 146 ng/dL to 320 ng/dL in a two week period after cutting the doses of hormone gel by over half. Something is going on, we just don't understand why or how.

In the meantime of scheduling an appointment with endocrinology, my doctor ordered pelvic and renal (kidney) ultrasounds to rule out Polycystic Ovary Syndrome, which is a hormone disorder linked to excess male hormones in a woman's body. On a whim, I had previously had this procedure completed in 2019 only this time, it was a bit more nerve racking because there was a direct correlation. Everything came back normal. This.Is.A.Praise...but also a bit of a wanderlust.

Last week, I explained to my therapist how I tired I am from being bounced around, not just from doctor to doctor but from diagnosis to diagnosis. From plan of attack to progress to back to the beginning. I'm emotionally drained from the constant medical experimentation surrounding the sexual aspects of my body, my marriage, my hormonal health, my well-being, fertility and family planning. I want to just live without the anxiety, without the random crying, without the pain, with peace my period will come regularly, with knowing all the glands and secretion are happening as they should, to desire my husband in the most intimate of ways ... all of the things.

So she says, "Why don't you take a break from it all. Take a month away from the doctor's office, from the traveling, from the research, from PT. You're off the medicine, so there is some distance. Give yourself some time to just live with your husband, focus on the sensual aspects of life rather than the medical mirage you've been immersed in." And I didn't have a response to her suggestion because I've never known a life with my husband where we haven't been trying to "figure things out" for the sake of each other. I shrugged my shoulders, left the call and found myself researching later on - utterly confused and uninformed by the internet...ha go figure.

And I found myself today replaying her words in my head. I'm some where in the middle of unsure but refreshed by her words. So I'm heeding her advice because there is nothing harmful in the focus of sensuality of myself and my spouse for a month's time. Anyway, by the time I call and schedule to see the endocrinologist, a month will have passed.

I wonder what growth can happen in that month? What healing can come from a month of no co-pays?!

By no means am I giving up. Absolutely not. We will get to the bottom of this because we are not meant to live with pain, live with anxiousness, live with imbalances, live with fogginess and fatigue. Yes, we will be persistent even if it means traveling, changing doctors, out of network expenses, trial and error but I'm tired right now and I think I might blow up if one more doctor calls me unique.

Somewhere down the line, in the hubbub of medical submersion, Joshua and I have lost the sense of creativity and spontaneity and that too, deserves to be found.

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In honor of Father's Day 2021 - yes we are 'those' people