Being unwell, for one reason or another, on a daily basis is honestly a full-time job. One with a lot of overtime, little time off, and hardly any benefits.
I spend my days trying to manage all of my conditions just well enough to get by. Just well enough to be able to take care of my pets, and do a few activities of daily living (such as bathing, chores around the house, laundry, and making and eating food). Each and every one of these activities drains any little bit of energy I am able to muster and I find myself requiring frequent breaks in between, collapsing on my couch. If I have to go out grocery shopping or to an appointment, I am unable to do all of my activities of daily living on my own. Just getting myself ready to go out in public leaves me exhausted (getting dressed, fixing my hair, and putting on makeup to cover up the fact that I’m unwell).
During my frequent couch breaks, I try to use my time wisely by researching my conditions in attempt to find ways of improving my quality of life. I’ve spent countless hours reading (and re-reading) dry medical text and researching treatments and doctors. I have piles of notes that I take. This hard work has paid off for me by way of the various diagnoses I’ve accumulated, validated by medical professionals. It is a strangely nice feeling, when you can give a condition a name and have what you’re going through validated (asopposed to suspecting it may all be in your head).
At this point I can say that, because of my research, I have been officially diagnosed with Endometriosis, Celiac disease, and Postural Orthostatic Tachycardia Syndrome. And, because I suspect that these things don’t all appear out of nowhere, that they are somehow related. I am quite convinced that they are all symptoms of the genetic condition known as Ehlers-Danlos Syndrome (Hypermobility Type), but I haven’t pursued the official diagnosis on that one just yet!
Anywho, so, a bit more on how my life is lately…In addition to coping with the recent loss of my grandfather in February, I’ve been trying again to figure out what I can do to feel better (I just feel so run-down all the time), so I went in for a general check-up/update with my primary care doctor last week. We decided to run some tests (CBC, Ferritin, Vitamin D, TSH, and Tissue Transglutaminase IGA and IGG to see how Celiac progress is going), she also increased my Effexor dose from 75mg/day to 150mg, put in a request to have a thyroid nodule that was found a couple years ago to get looked at on an ultrasound, advised that I follow up again with my cardiologist regarding POTS, and told me to follow up with her in 4 weeks to see how I’m doing with the Effexor and discuss possibly increasing my Adderall dosage to help with the fatigue.
The blood test results showed that Vitamin D and Ferritin levels were on the low end, but the Celiac test came back really good! Since I was diagnosed in 2015, IgA went from 100 down to 5 units, and IgG went from 30 to 2 units. I’m glad because last March, the biopsy of my small intestine showed a lot of damage still, and the gastroenterologist said I wasn’t doing good with my diet (which was super disheartening because I was trying really hard!)
In terms of finding out what could be contributing to my debilitating fatigue though, these blood tests didn’t help much. Back to the ol’ drawing board. It’s probably just all because of POTS, but I’d like to find a more effective way of coping with it to increase my quality of life. Currently, all I’ve been advised to do is drink a lot of water, take salt pills, and wear compression hose. This treatment plan simply keeps me from fainting, but doesn’t do much at all for the brain fog and fatigue.
^ Me. Forever trying to keep shit in check.
On my to do list:
- Find a dysautonomia specialist (a neurologist, perhaps?) to discuss better treatments
- Find a physician to diagnose the Ehlers-Danlos Syndrome (a rheumatologist?)
- Make my follow up appointment with primary care doc.
- Obtain a new prescription for stronger pain meds (It’s that lovely time of the month, and I’m currently experiencing an incredible amount of pain due to the endometriosis. Over-the-counter meds don’t work well enough, and I don’t want to take the birth control pills that the gynecologists always try to push me on. I’ll have to plea my case to my primary care doc at the follow up, and pray that she’s understanding enough to give me a prescription.)
- Exchange my box of Epi-Pens at the pharmacy because they were on the recent recall list. (Did I mention I also have a life-threatening peanut allergy?)
- Finally find a mental health provider who accepts my insurance (all this weird, complicated health stuff is isolating hard to navigate on my own, and I’m also grieving over the loss of my grandfather. It’d be nice to talk to someone.)
- Make an appointment with an oral surgeon for a dental implant consultation. (I have “congenital hypodontia” – one of my molars just never grew in and now, after years of wear and tear without it, my mouth is all screwed up…TMJ and lots of bone loss in my jaw.) I really hope there’s a treatment for me and that my insurance will help to cover it!
- Try to get some help financially (e.g.: social security, food assistance, etc.). My full-time job as a professional sick girl has kept me from working a real job since 2013. With only more symptoms piling up and no cures in sight, I’ve gotta do something in terms of an income.
- Make appointments for my chihuahua babies. (Luna, the 5-year-old, needs a routine dental cleaning, and Lily, the 7-month-old, has to go in for her spay surgery.)
- Take a bath. (But I’m so tired and in pain, I feel like I’d just drown.)
- Take my puppies for a walk. Lily just ran up and brought me her leash, cutest. thing. ever. Must muster energy to take her outside at some point today. Thank god for puppies and kitties, I mean really. I don’t know what I’d do without them.
So, there you have it…a ginormous amount of rambling because I’m couch-bound and felt the urge to write. Bless your heart if you’ve decided to actually read any of this!