It doesn’t take a psychiatrist to figure out that right now my life is exceptionally overwhelming. I thought I’d gone through a lot last year, which I did. Unfortunately, it appears, at least so far, that 2017 is turning out to be a real stinker as well. And we’re only a month in!
Maybe listing everything I’m overwhelmed about will help. I’ll try to make this as coherent as possible. However, between this perpetual brainfog and the fact that as of right now, I’ve been awake for 28 hours (couldn’t sleep due to pain and just feeling crummy in general…plus I wanted to finish a book I was reading), it may be a little bit off.
- The dysautonomia/POTS came out of literally nowhere a few days prior to Christmas. However, now that I look back, I think it was starting when I was doing some decorating a few weeks before that. Of course, this just happened to be right before I was to return to work after having had to extend my leave following my failed attempt to return in October. Another hit to my psyche regarding my confidence in my ability to ever return.
- Although the POTS diagnosis is actually a relief because it explains my symptoms, it’s largely an overwhelming diagnosis, I think primarily because the treatment is, well, overwhelming.
- I have to drink 2 liters of Gatorade a day. I’m actually drinking a gallon (which is about 3 1/2 liters); because I need so much hydration, I’d rather drink something that will help my blood volume more than water will. Sometimes I’ll drink a glass of water with a Nuun tablet in it for some variety; those contain 360 mg of sodium each.
- I have to consume 5-7 grams of sodium a day. Honestly, I barely eat anymore because I’m so full all the time from drinking so much Gatorade and water. Because of this, I get most of the sodium I need from salt tablets. And lots of them. I purchased the 1 gram sodium chloride tablets from Amazon. However, each tablet only contains 394 mg of actual sodium, so I take 3 tablets at a time to get me a little over 1 gram of sodium, and I do this several times a day. Occasionally it can be a little rough on the tummy. 🤢 And if I happen to not take as many tablets on one day as I usually do, it will knock me off my feet. That’s already how sensitive my body is to salt now.
- I have to wear compression socks when I’m not sleeping. These are medical/professional athlete grade 20-30 mmHg socks. Luckily, I found some great ones on Amazon that are super cute!
- We raised the head of our bed by about 4″, which I actually quite enjoy.
- In a few weeks, I will be starting an intensive, extensive cardiac rehabilitation exercise program designed specifically for POTS patients. This is a huge part of recovery.
- The thing with the treatments is that they’re pretty much forever, especially the exercise (the exercise part is fine with me!) My life now revolves around drinking Gatorade and taking salt tablets.
- The possibility of another new diagnosis looms not too far off. I have an appointment with a geneticist who specializes in Ehlers-Danlos Syndrome on February 24th. The possibility of having this condition has shuffled around in my mind for the past seven years since I first read about it. Now I have learned that POTS and EDS are extremely co-morbid, meaning they have a tendency to occur together. So I want it to be investigated.
But you know what? I think the worst part of all of this is that I blame myself. Not if I have EDS, because that’s genetic (there go my crappy genes misbehaving again…). But I blame myself for the POTS. Why? Well, even though modern medicine doesn’t know why POTS occurs, it has been noted to occur following traumas to the body, including surgeries and anesthesia. Dr. J himself said he thinks this happened because of “everything that happened to [me] last year.”
I had three surgeries last year. In July, the hernia repair. In September, the brain tumor removal. And in November, the stent for the aneurysm. Between the three surgeries, I spent about 7-8 hours under anesthesia. And technically, these surgeries were all elective.
I had the pelvic surgery because I couldn’t handle the pain anymore. I’d dealt with it for eight months by the time I caved. I was on MSContin 30 mg three times daily and oxycodone 10 mg as needed for breakthrough, which I was taking about 6-8 times a day. Although there ended up being good reason for the pain (intermittent ovarian torsion will do that to you), the surgery ended up only helping a little. My pain, in the same spot at my right ovary, is still anywhere from 4-7/10 every day. So I’m only slightly better off than I was before.
The only reason I had the brain surgery was because I couldn’t tolerate the side effects of the medications used to treat the tumor. Many patients with prolactinomas are forced to tough it out because surgeons don’t like taking out prolactinomas. But I had a sympathetic surgeon who actually suggested it was time for surgery by that point.
I also didn’t technically have to have the stent placement for my aneurysm. The chances of spontaneous rupture were very low since the aneurysm was only 4 mm. Although Dr. Bain recommended taking care of it at some point, it didn’t have to be right away. But I just selfishly wanted to get it over with so we could move ahead with getting it behind us so we could start a family.
So yes, all those surgeries were technically elective. I elected to have them, and because I couldn’t tolerate pain or nausea or dizziness or vertigo and because I was putting my own selfish desires ahead of everything else, I’ve wound up worse off than I was before. I’m still having pelvic pain. I’m still having dizziness and nausea. And keeping myself from being bedridden has turned into my full time job.
So you want to talk about being overwhelmed? I should win a medal for it.