Medical Update

My health has been up and down for what seems like forever (really a few years) and we haven’t been able to figure out what’s causing my symptoms until recently. I’ve been overheating, feeling exhausted / weak, and just overall down. :( It’s hard because one day I will feel great and full of energy and the next day all I can do is lay on the couch. This gets really hard because I feel like I can’t do all that I want to do. Like work, hanging out with friends etc.

Another of the symptoms I’ve been experiencing is really fast breathing. The weird thing is my oxygen levels usually look fine. My heart rate gets a little high though. I’ve had these episodes maybe 4 times in the last 8 months. I’ve kept all my doctors up to date on my symptoms but they’ve been unsure of what the deal is. In December I had one of those episodes and when I called the clinic they suggested I go to the ER. :( They wanted to rule out anything critical and get checked out during an actual episode. I ended up being admitted for about 2 days. The frustrating (but good) thing is that all my labs and tests came back normal. When they sent me home I still wasn’t feeling good but they had ruled out the scary stuff. I was told to follow up with my regular team.

Fast forward to now: I’m doing much better. Prior to going to the ER I had been diagnosed with something called adrenal insufficiency because I’ve been on steroid medications forever. After going to the hospital my endocrinologist suggested modifying my dose a bit and seems to be making a big difference! I’m not overheating and my energy levels are more even. My doctor explained that with this condition my body can’t produce enough of the hormone called cortisol. Therefore when my body gets stressed it sort of stays in “fight or flight” mode. It can’t regulate itself. I go back to see him on Valentines Day and will hopefully get some more information about this. For example if I get a cold I’ll probably have to increase my dosage temporarily to help my body cope. It’s weird. Lol. I’m just happy that I’m doing better. We don’t know what the initial stressor for my ER trip was. One theory is that I need more help breathing throughout the day. Therefore my team wants me to consider using my ventilator more during the day. We’ll see. I actually go to see the vent team this week and it’ll be interesting to see what they say.

I’m just glad to be feeling better overall. Like I said in the beginning it’s been so frustrating not feeling good. It has been affecting my mood, work, and social life. :( Fingers crossed I continue to feel good!

I’ll post an update about work and social / fun stuff soon. :)

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