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The Chronic Chronicles: Health Update #5

Health update. (It’s going to be a long one)

Hi family and friends,

I wanted to share an updated health update.

Man, where do I start? I feel like I have so much going on at all times now which is good and bad. Good because I am starting to get the answers I was looking for. Bad because they are not exactly the answers I wanted. Does that make sense? I hope so.

This past week I got my pulmonary functions test results back and thankfully my lung function is normal!!! Praise God.

I also had 3 other appointments. The first was with a neurologist. That appointment was okay, I felt like the doctor dismissed some of my symptoms but he put in referrals for me to get an MRI and an ambulatory 24-hour EEG. So those are scheduled for Wednesday and Thursday of this upcoming week. I am still not driving so we’re hoping the testing he ordered will detect any of the seizure-like activity I’ve been experiencing.

The next appointment was actually with my therapist! I hadn’t been to therapy since august when I ran out of insurance so it was so good and much-needed to meet with her this past week. I got to rant/vent about all of this health stuff and she was so receptive and helpful. So thankful for her!

My last appointment (and honestly the one I was the most excited and nervous about) was with my cardiologist. It went SO well. They did orthostatic testing to test me for POTS. POTS stands for postural orthostatic tachycardia syndrome. The easiest way I know how to explain It is that someone who has pots has a faulty autonomic nervous system. So when they go from laying down or sitting position to a standing position, all of their blood rushes to their legs and feet and not enough blood is being circulated to the brain. Their heart rate spikes very quickly to compensate and then they experience fainting or near fainting. There are a lot of other symptoms that come with POTS but I’ll make another post on that. To be diagnosed with pots your heart rate has to increase by 30bpm after standing from a sitting or laying down position. Mine increased by 35. I will be going back in to see a POTS specialist in 3 weeks.

There is another condition called IST which they diagnosed me within the office. IST stands for Inappropriate sinus tachycardia. It means my resting heart rate is abnormally high pretty much all of the time and there’s no specific known cause. IST is very similar to POTS and it has a lot of the same symptoms. Dizziness, chest pain, fatigue, and fainting, amongst many other symptoms. (Again, I’ll make separate posts on these).

Both POTS and IST are incurable syndromes but beta blockers can help lower the heart rate and there are some other lifestyle changes you can make to make things a bit more manageable.

I am still not able to drive, walk or stand for long periods and I am still constantly in bed. The last few days have been incredibly hard on me. The fatigue is really bad most of the time. And I honestly feel crappy (GI issues) and I haven’t been able to determine if it's all a part of my ongoing health issues or if I’m somehow coming down with something.

I am incredibly bored and want to be able to go for a walk or something but I am not able to in my current condition. Thankfully, my doctor prescribed me a mobility aid. I am excited for that to come in so that I can get out of the house, go on walks, go to church, hang out with friends, and see my kiddos!!! Essentially getting at least a little piece of my life back.

I think that’s it for now. I’ll try to write something more in-depth about POTS and IST in a day or so.

As always, THANK YOU so much for your continued prayers. What a crazy year it has been thus far.


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