I Wished for Snow
I’m fairly open about my faith, so I might as well admit it now. I prayed for a white Christmas. I probably should have elaborated a bit more clearly as to how much snow I wanted but I guess I didn’t think that far. Obviously, my prayer got answered real fast. Be careful what you pray for, friends! It may have been three feet of frozen snow, but inside the delayed flights came a big miracle. I got an answer to a prayer that me and my family and friend have all been asking for since 7th grade. We gave up and assumed it was a mystery. But my dear friends: I have a diagnosis. Or two.
Gratitude Corner
I am overly gracious for my General Physician and my new POTS Specialist, Dr. Feldman. They have both exceeded my expectations and have been more proactive and supportive that I ever thought possible.
Flexible to a Fault?
I’m pretty dang flexible but I didn’t know it was due to a genetic disorder called Ehlers-Danlos Syndrome Type 3. I was diagnosed with Ehlers-Danlos Syndrome Type 3 (EDS3) and Postural Orthostatic Tachycardia Syndrome (POTS) on January 6th. Both EDS3 and POTS are chronic and something I will have to live with for the rest of my life. They are both rare disorders but there are various forms of treatment that can be given to enhance the quality of life. EDS3 is a genetic abnormality in connective tissues that make them overly “stretchy” and prone to early arthritis and joint and tendon injury. The abnormal cells that make up joints are also the same cells that create the walls and linings of veins and arteries. So in a sense, I have “stretchy veins.” And those “stretchy veins” is what leads me to explain POTS …
I Swear I Don’t Smoke POT(S)!
When I first heard the term, that was my first reaction: I don’t smoke I promise! But POTS, Postural Orthostatic Tachycardia Syndrome, is actually a defect in the vascular system; the system that the body does automatically/subconsciously such as regulating body temperature, breathing, blood pressure, blood circulation, and heart rate. Long story short, my vascular system doesn’t work quite right! Those that struggle with POTS experience brain fog, or lack of concentration and intellectual comprehension, fainting, dizzy spells, exhaustion, severe fatigue nausea, blurred vision, low exercise tolerance, tachycardia (unusually fast heart rate) among other less common symptoms. This is all due to one issue: gravity. POTS people don’t like gravity very much. When you (normal folks) stand up from sitting down and sit up from laying down, it takes your body approximately 1/4 to 1/2 of a second to redistribute the blood throughout the body, which shows as a few second of spiked blood pressure. For me, it takes up to 3045 minutes for my body to get used to sitting up or standing, and you can imagine how that can cause some major problems! Since 7th grade, I have been misdiagnosed with anxiety, mono, and a heart murmur, and sometimes was told that my symptoms were all in my head. It was a relief and overly empowering to finally have a diagnosis, but at the same time, I have a very long road ahead of me. This is something we like to call an invisible illness, and to make that clear, that is very different from a mental illness. SO to all who say, how can I help? I lead you to this article, “The Spoon Theory,” because all I truly want is understanding:
https://butyoudontlooksick.com/category/the-spoon-theory/
If you’d like more information on POTS, follow this:
http://myheart.net/pots-syndrome/
And lastly, if you are intrigued by EDS3 (Hypermobility Type), go here:
Skylar Rose Adams 