A Health Update
I've been dancing around this for a while, but today I'm going to do a deep dive into my health stuff. For the last eight months or so, things haven't been great over here. If you've been paying any attention, I really haven't been posting consistently. I haven't had any energy to work on any big projects and overall life has been pretty tough. Things are finally starting to get a little better but it's been very frustrating trying to figure out exactly what is going on. So I wanted to give you all an update, although it's still ongoing.
Health Update | What’s Been Going On
It kind of all started when we were in Argentina. I noticed my muscles were sore and tired ALL of the time. I started researching Ehlers-Danlos syndrome, because I have a few family members with it and it's not uncommon with people who have ADHD or autism to have it as well. When we got back from Argentina, it became even more obvious something was really wrong with me. All of my bloodwork came back normal, but I was gaining weight and still feeling pretty crummy. I talked with my providers about Ehlers-Danlos some more and got my thyroid tested as well as an allergy panel and those both came back normal. I kept advocating for myself because I still wasn't feeling good so my doctor ran a hormone panel, and my hormones came back kind of bizarre. A few levels came back really, really low so she referred me to an endocrinologist. Meanwhile, my symptoms seemed to be getting worse. The fatigue was unbearable, and I became apathetic about everything and had zero motivation. I was getting horrible, horrible daily headaches that weren't like the migraines I had in the past, was very lightheaded and my hair was changing and thinning. I had pretty bad joint pain and my muscles were unbearably sore. I didn't feel like my ADHD meds were working and my short and long term memory was struggling. I was constantly thirsty and was getting the shakes often. Things were just not okay and continuing to get worse. When I was finally able to see the endocrinologist he was pretty sure I had a tumor on my pituitary gland. However, nothing showed up on the MRI and after he did another hormone panel things came back normal so he referred me to my OBGYN. My OBGYN tried taking me off birth control but that didn't help either so she referred me to a cardiologist. It was all so frustrating. I was being passed around from doctor to doctor and still wasn't getting any answers.
The cardiologist suspected I had POTS (postural orthostatic tachycardia syndrome), a heart condition, so they set me up with a two-week heart monitor, an echocardiogram, and a tilt table test. He told me to up my salt, water and electrolytes and to avoid heat and intense stress, which is hard with two small children in the middle of summer. The tilt test and echo were pushed a little far out but the heart monitor showed I have a pretty consistently elevated heart rate. I was put on a beta blocker called Metropolol to help with the symptoms until I could get all of the testing done and back sometime in April of 2027. I have felt better the past two weeks of being on this medication than the entire year so far so things seem to be looking up. My ADHD meds seem to be working better and overall my fatigue and other symptoms seem to be trending better which I am very grateful for.
Health Update | Things that I am doing to combat the symptoms
Drinking a ton of water with electrolytes. I don't love the taste of Liquid IV but tolerate it more when I combine it with a can of soda water.
Fueling my body correctly
Continue on the beta blocker, but take it at night. This helps me not be so exhausted during the day and is helping with my sleep as well.
Listening to my body and take a break when I need one.
I've added Vitamin D, Vitamin C and Folic Acid into my supplement routine.
I break up my tasks so I can still have rest time and am not overly exerting myself.
We still don't have all of the answers, but I'm hopeful while I wait for more tests to officially diagnose the things I'm doing now will continue to help me get back to being myself. So, stay tuned for more projects as my energy slowly comes back!
