Thanks for bearing with me while I found the time to sit down and write this. Luckily for me, I’ve had some good energy lately here and there. Luckily for this article, I’m currently having a low energy day so it’s forcing me to sit down. I’m feeling inspiration to write today, so that mixed with my urge to do something productive despite not having the physical stamina to do much else is ensuring that I’m about to crank out an article long enough to warrant a “tl,dr;” or three.
The last time I wrote a life update, I informed you of my most recent adrenal crisis. That in and of itself was stressful, but my health overall has been suffering for quite some time long before this crisis, and began even before my first crisis back in 2016. In fact, since I left the care of my original endocrinologist five years ago, I have been passed from one endocrinologist to the next, each one unwittingly contributing errors to my treatment plan until I found myself experiencing a decline in health due to the very treatments that were meant to keep me alive.
Recently, I returned to the care of the endocrinologist who had originally diagnosed me when I was a kid (I’ll call him Dr. E). He wasn’t taking on any new patients, but he remembered my unique case and agreed to take me back. I went to his office for a visit about a month ago, and we went over the last five years of my medical history. I went into detail about the treatment plans each of the three endocrinologists I had seen in that time had me on, and explained the circumstances leading up to both adrenal crises. He conducted a physical examination and noted my shaking hands and other reported symptoms. He said that my current dose of Levothyroxine was too high, and that might be the cause of my tremors and insomnia. He also noted that the most recent endocrinologist I was seeing (I’ll call her Dr. K) had really screwed up my female gonadotropin replacement therapy. My MedroxyPROGESTERone (progesterone) dose was twice what it should have been, and the Estradiol (estrogen) treatment plan she had ordered left me estrogen deficient for a week every month. He gave me new orders, and suspected that these flaws in my treatment could be to blame for the severe depression I have been diagnosed with recently.
Oh yeah, did I mention I was diagnosed with major (clinical) depression?
Click here to read more about that if you want.
I decided to leave Dr. K after my complaints of insomnia and clinical depression remained ignored by her after multiple visits over a period of about six months. I was very patient (pun intended), but it was clear to me that she wasn’t going to address those symptoms. I had left Dr. E’s care so long ago because I simply didn’t have transportation to his office anymore, which was over an hour away from home. After feeling let down by so many doctors along the way, and knowing that Medicaid offered a ride service that can take me to his office again, it was an easy choice to return to his care.
I have a new lab test coming up next week to see if the changes Dr. E made to my treatment plan have made a difference. I don’t feel any different yet, but changes in the body can take a while to notice. The bloodwork will give him some insight into whether or not we’re on the right track.
In the meantime, I’ve been trying to give myself the time necessary to focus on my health. Over the last year or so, I’ve been doing a bit too much. I felt the need to volunteer in my community, and to get out and do more. Unfortunately, that’s not something my body is willing to let me do. Consequently, I’ve really worn myself thin and now I have very little energy to spare, even for necessary daily tasks such as cooking and cleaning.
I’m going to let you in on a secret. People with disabilities often try to forget that their disabilities exist. At least, that’s the case with me. It’s easy to do since my disabilities are all invisible to the naked eye, but they are just as real and just as debilitating as any other physical disability. In case you’re new to my blog and have no idea what my conditions are, here’s a quick run-down of my diagnoses.
It’s important to remember your limits and pace yourself accordingly, a lesson which I am apparently still learning.
Anyway, I do have some good news.
My disability hearing has been scheduled! It has taken a little over a year, but the long wait is finally drawing to a close. My hearing isn’t until January, but my lawyer and I are confident that I will win the case, considering my laundry list of diagnoses and well-documented medical history. I am nervous, but also relieved to be so close to the end of this long battle. Please wish me luck. Winning this case will mean financial security for the rest of my life. I have been living with the threat of financial instability looming overhead for too long now. Without the help SSI, I am entirely at the mercy of friends and family in the event that I would lose my home. Needless to say, the extra stress from all that worrying can’t be doing me any favors.
So, what’s next?
Currently, I’m just trying to get household chores caught up and putting self-care at the top of my list. I’m trying not to take on any extra tasks, but I do have plans to host some group therapy streams on Twitch, and I’m already a Municipal Liaison for NaNoWriMo this November, so I will be doing that next month.
After NaNoWriMo is over, I plan to take a couple of weeks for myself in order to recover from it. I have a very full schedule all November, so I can almost guarantee it’s going to take a toll on me. I hope that isn’t coming across as a complaint. I’m not trying to complain, just being a realist here.
Once I feel like I’m back on top again, I plan to put time and energy into streaming regularly on Twitch. I have streamed off and on in the past, and now I really feel like I’m getting the hang of it. People seem to enjoy hanging out with me there as well! It seems like it will be a great way for me to keep my sanity, and maybe even help bring in a little cash here and there if I take some commissions. There is a game coming out that I have been following for quite some time as well, and I’m planning on streaming gameplay of that live on my channel as well if I am able to get a better computer before then.
I’m sorry if my articles lately have seemed somewhat scattered or difficult to follow. Brain fog is an ever-present nuisance these days, and I’m sure it’s probably having an impact on my writing.