Dearest Family and Friends,
I haven’t posted to my blog in a long time. This is because 2018 has been particularly difficult. My POTS symptoms have increased. Doctors compare the functional impairment of POTS patients to those with congestive heart failure, and the quality-of-life to those on dialysis for kidney failure. While the severity of symptoms widely ranges in POTSies, approximately 25% are disabled and unable to work or go to school.
Personally, I am dizzy all the time, suffer from vertigo, tunnel vision, and severe digestive issues including constant nausea and almost daily vomiting. Some days I can’t stand or walk at all without stumbling or falling or fainting. Most of my days are spent listening to book on tapes and clinging to the fact that God’s plan is more important than having fun.
Most of the time my brain fog is so severe, that even finding a time to write this coherently, has been difficult. I write today to tell you that we have caught a glimmer of light in the trenches. But first, I want to explain something about POTS.
POTS patients have a faulty autonomic nervous system (ANS). The auto part is broken. Any process your body does automatically doesn’t run so well if you have POTS. Things like heart rate, blood pressure, digestion, and even breathing. The cause of all of this disruption is related to the ‘fight or flight’ reflex.
A small trigger, such as meeting an old friend or stubbing your toe, gives a healthy individual a small surge of adrenaline, then returns them to a balanced state. In a POTS patient, the same instance would send their levels off the chart, giving a wild upheaval to hr, bp, etc. and then drop them like a bad cabbage. Triggers can include being surprised, excited, worried, pretty much any feeling ever, even on a tiny scale. Once the body gets out of whack, the farther down a spiral of unbalance it goes. Just standing up can make a patient blackout.
When I push myself to do too much (standing too long, going somewhere for too long, or going anywhere two days in a row even with the aid of a wheelchair), I go into a particularly bad episode. I can’t control my body except in fits and starts. I fall and can’t get up. I shake. I can’t see clearly or at all. Sometimes, I even have problems breathing. My body just freaks out. I am on a lot of medication which helps some. I know because I recently had to wean off one to try a new one, and without it, what were my medium everyday stumbling and falling, became violent crash and burns. But all my medications merely attempt to alleviate symptoms.
Through much research, we have discovered the POTS Treatment Center which doesn’t go at symptoms but seeks to retrain a patient’s ANS system into working properly. How do they do this exactly? I don’t know; I haven’t been yet.
People who go through this treatment record feeling at a minimum 30% better after just one week and many report an 80% improvement. At the treatment center, they work with you several hours every day for a week and a half, training you how to heal your ANS, and at the end, they give you equipment to monitor yourself and continue with the program long distance.
The treatment includes appointments with four specialists and the following components:
- Heart Rate Regulation
- Suggested vitamins and supplements
- Coping Skills
- Lifestyle Management
- Stress Management
- Relaxation Training
- Sleep Recommendations
- Exercise Protocol
- Counseling to address any anxiety or depression due to POTS
People who come in wheelchairs, leave walking. People like me improve so much, they go on to run marathons and triathlons and own their own businesses. If you are interested in learning more about the center, here is their website: http://www.potstreatmentcenter.com/
So it’s awesome, yes? It is also expensive, unfortunately, and they do not take military insurance. Big surprise. We have decided it is worth it, in the hope that I will be able to rejoin the human race in living, however the money may work out. We are still exploring options, to see if there are any fundraising efforts the military will help us with, but it’s not looking optimistic.
We have opened a gofundme page and would appreciate any help you might be able to give. On the page, we have a breakdown of costs and pictures of Lynn and I fighting this fight together. https://www.gofundme.com/make-molly-healthy-again
Whatever you do, pray. Pray that the treatment will be extremely effective. Pray the money will work out. Pray for peace. Pray that I will trust God no matter what he has in store for my life.
But I would love to be myself again.
Here’s to hope!
P.S. If you or anyone you know is chronically ill or facing extreme life struggles, I highly recommend “When God Weeps” by Joni Eareckson Tada. It is wildly encouraging and not at all depressing like I thought it might be. She delves into the nitty-gritty, biblically showing that behind all our sufferings there is so much purpose.