I’ll try to keep this short and sweet so as to not burden anyone.
I need help from you, my faithful readers.
The brain fog caused by one of my medical conditions, POTS, a form of dysautonomia, has made it monumentally difficult for me to think. It’s like…my thoughts won’t connect, or certain parts of my brain won’t talk to each other. I can almost feel this void in the middle of my head, like a bridge is out over a river. I can feel an idea, or a sentence starting somewhere, but then it doesn’t get to where it needs to go, and it never materializes. I feel as though I’m stuck with all of these thoughts bouncing around in my head, but they won’t come out or even come to fruition.
I’m not using this as an excuse for my less than stellar writing as of late or for my general lack of writing altogether. I just can’t come up with anything that I think would be worth anyone’s while to read. So I’ve stopped writing. Or I’ll write something and immediately trash it because it’s not of a high enough standard for me to release to all of you.
Seven years ago, I graduated from pharmacy school with my doctor of pharmacy degree.
Seven years ago, I moved to a new city as a newlywed, fresh back from our honeymoon.
And seven years ago today, June 14th, I started my career as a pediatric pharmacist. My dream job.
And now I wonder…was there even a point?
We started off as children. Teenagers right out of high school dedicating ourselves to a highly esteemed profession, one which consistently ranks very high among the most trusted professions in the United States.
If you’ve been following my blog since before October 2016 or so, you might remember that I attempted to return to work on October 24th, six weeks after my brain surgery. You may also remember that it was a complete disaster and I have been unable to work since.
But since that was a one-off failure, I don’t count that day as my last day of work. The day that gets that designation in my book is June 10th.
That’s right. I haven’t really worked in a whole year. Hence the reason I don’t even count that day in October.
For me, 2016 was the year of the surgeries and bizarre diagnoses. Three surgeries, to be exact, spanning over a period of four months. Once the surgeries were over, I thought that once I had an adequate recovery period, I would be back to normal. I’d be able to return to work, from which I’d had to take an extended leave of absence, and I could put the entire year behind me as a gargantuan fluke.
But it was not to be. Almost exactly a month to the day after my third surgery, I started experiencing symptoms that very quickly led to a diagnosis of postural orthostatic tachycardia syndrome (POTS). The tachycardia (rapid heart rate), shortness of breath, and presyncope (near fainting) were being caused by moderate hypovolemia (testing revealed my blood volume to be 18% below normal) and severe venous pooling (35% of my blood volume was pooling in my lower extremities; this number should be 5-10% in a normal person with quick resolution within two to three heartbeats).
Why did this suddenly happen? POTS has been linked to certain autoimmune diseases (including celiac disease, just my luck) and has been noted to occur following such events as pregnancy and trauma. However, medical science does not yet know why POTS happens. So what was going on with me? Continue reading “Is My Illness My Fault?”
This will be a weekly post of the most random of random questions to answer- to share my world! Thanks to Cee’s blog for being the brainchild behind this!
What’s your strongest sense? Smell. (I must have been a dog or cat in a past life.) Many of my memories are based on smells. It was so weird after my brain surgery when I couldn’t smell anything at all for a week or two because the tumor was removed through my nose. And it wasn’t just like when you have a cold and can’t smell anything, this was a total, complete loss of the sense. I was lucky to get it back so quickly; many people experience a loss for months to a year! And it affects your sense of taste, too…I didn’t want to eat at all because what’s the point of eating if you can’t even remotely taste or smell your food? My husband had to practically force-feed me. Continue reading “Share Your World: June 5, 2017”
Recently, I wrote a post that ended up being quite popular within the dysautonomia community. It’s actually been the most popular post I’ve written this year. I honestly have no idea why; I have read it over and over again and can’t seem to find what is so remarkable about it. When I asked my husband, even he said there was nothing profound about it. (Thanks, honey; I can always count on you to be honest. 😊) But whatever it is, I’m still grateful for the 843 hits, plus the 70 Facebook shares thus far. (That’s a lot for my blog, ok?) To those who found it worthy of reading and/or sharing, thank you so much! I hope the post was helpful to you in your own fight, or friend’s or family member’s fight, with dysautonomia.
It was encouraging to me to write because as I reminisced, I realized that I have made some decent progress since I was diagnosed in January as I’ve teased out what works and what doesn’t regarding symptom management. Things are a bit challenging at the moment because my cardiologist has been on unexpected medical leave since April (starting two days before my appointment where we were going to start Florinef) and I don’t see a POTS neurologist until July (after having waited seven months for the appointment), so right now everything is on hold and nobody is managing my POTS at all. So I likely could have made even more progress by now had things gone differently, but I’m just being patient and trying to do my best in the meantime.
But that particular post unfortunately brought up another issue that coincides all too often with posting things of a medical nature on social media: people who feel they have the right to judge you for how you’re handling your illness. Continue reading “Fighting Back With Love”
One of the worst feelings you can experience as a chronically ill person is invalidation. It’s not necessarily that others don’t believe you (although that is also a tremendous problem and a discussion for another time), but that they either don’t see or don’t understand how much your illness(es) impact your daily life. Especially when mental health plays a role in your battles.
And what makes it even more frustrating? When that invalidation comes from healthcare professionals. When, to their eyes, you “don’t look sick” enough or you don’t have “enough” chronic illnesses or you’re “too young” (no matter how thick your medical chart) to warrant feeling depressed.