The past couple weeks have been a mess.
I’ve been in the hospital (ER and admitted) twice now in a week. This inexplicable hypertension coupled with untameable vomiting and nausea is getting worse.
Recently I picked up the book “Brain on Fire” by Susannah Cahalan. It’s a non-fiction account of a woman’s strange experiences trying to get her unusual medical condition diagnosed.
I’m about halfway through it and it’s causing me some concern. Now, I don’t think I have what Ms. Cahalan has. I’m not that crazy. But if her inexplicable seizures were replaced with my random hypertension spikes, we would have a similar illness. Her mental-health related symptoms are slightly different, but only in how they manifest.
I wish I had access to such doctors as she did.
The most I can be thankful for is having a mother that is just as much of a warrior for me as Ms. Cahalan’s mother was for her. I am most thankful for that.
I am however, enraged with doctors, depressed by the hopelessness of my condition seeming to be un-prognosis-able (I made a word- deal with it), and just tired. So very tired. The additional meds they’ve put me on just have awful side effects on top of the actual effects of my body trying to fight this mysterious condition.
So far I have the following:
-hypertension (scary-high blood pressure) that does not always respond to meds (it seems to fluctuate at random and not really in relation to what I am taking/prescribed)
-crippling migraines (they usually happen during the BP spikes)
-random bouts of nausea/vomiting that is so bad I spend hours in the bathroom
-bursts of tingling/numbness in varying extremities or somewhere on head/scalp that lasts for hours
-dizziness and lightheadness frequently throughout the day (and not necessary when the BP is at it’s highest)
-low to nonexistence appetite (this may technically be a mental-health symptom due to my ED, but I’m not sure)
-verrrrrry slow healing and bad scarring from the simplest cuts or scratches (my mother insists this is part of my symptoms)
-constantly low potassium (even if I try to take supplements, arrange my diet to try and get extra)
And that’s not even counting any of the mental-health symptoms; which if I read into the interesting case in this book, can be coupled with physical symptoms to form a diagnosis.
I haven’t gotten far enough in the book to read about Ms. Cahalan’s actual diagnosis, but I have read articles on this case in the past. It ends up being some lesser known autoimmune disorder. My mother still thinks this is what I have. I did have some blood tests show my ANA as positive (which I’m led to believe is some sort of indicator of an autoimmune problem). But further tests were all inconclusive.
Anyway, I’m struggling. I’m struggling a lot. I’m feeling very lost and hopeless with these walls that keep getting thrown up regarding my health. Even when I try to work with a plan or a doctor, it doesn’t help or another roadblock is placed in my way.
I’m wondering if perhaps it isn’t really all worth. I wouldn’t say I’m suicidal, per se, just…tired and hopeless. I wouldn’t say no to an “off” switch, but I don’t have the energy to create that switch on my own.
Obviously with the constant pressures of 200/150, my body is doing it for me anyway.