#hyperadrenergicpots

[oh-gee-no-way]

Health Update

Got diagnosed with HyperPOTS yesterday 

So now I have Hashimotos and HyperPOTS and some vague hypermobility issue 

I got told by my neurologist to see an allergist/immunologist about my hives and possible MCAS and hopefully if I get in I can see my rheumatologist or neurologist again and look into EDS (my neurologist said  looking into my pain and joint pain was the next step)

I still feel awful but I feel less awful than when I first got the Hashimoto’s diagnosis because my synthroid does it job well so there is hope.

For now I will still have to lie down a lot.

Tilt table was crazy though I had chest pain, shortness of breath, felt hot, sweating, leg tremouring, and felt lightheaded. I still don’t know my exact numbers (they did not show me the direct test numbers) but I did hear the tech say my HR was over 140 and it sure felt that way. My BP apparently went real high too but I don’t know the number. Typically I would have just sat down by minute two I don’t typically wait out the waves cause my legs get too shaky to stand. I didn’t faint but I have only done that like twice in my life so I was not surprised I didn’t.

[clamchops]

[chronicallyclever]

Things I lie about when I am around healthy people...

1. Ostomy bags aren't that bad or gross.

2. I think my scars are beautiful.

3. Potential lovers don't treat me differently because of my illness.

4. I am thankful for my challenges because they have made me a stronger person.

5. My friends are all supportive and visit me a lot when I am sick.

6. My illness does not hold me back from doing everything i want to do in life. (i do most things but not everything)

7. No doctors have ever thought I was batshit crazy.

8. I am not scared of death. 

9. All pain is created equal. I respect your healthy person pain. (stomach aches, coughs, colds; I respect the hell out of all that shit.)

10. I care about your healthy people problems and would just love to hear more about them.

11. I think my new treatment is going to cure me.

12. I am thankful when healthy people pray for me.

13. I don't ever cry in public, at Riteaid, when someone asks me if I am okay.

[chronicallyclever]

Hello Tumblr, Today is Rare Disease Day. It is a holiday for me about celebrating the fact that I am alive. I suffer from a type of Dysatuonomia called Hyperadrenergic Postural Orthostatic Tachycardia Syndrome (HyperPOTS). I also live Intestinal Failure. It took me 10 years to be properly diagnosed, in that span of time I have had 12 major surgeries and 11 episodes of Sepsis (which has a 40-60% mortality rate). I should not be here. I am not sure what the odds are of surviving a condition when you had a 60% change of dying 11 times, but i am sure that is a miracle. Before diagnosis and proper treatment i was having about 3 seizures a week, was wheelchair-bound and dependent on pain medication and TPN. After being properly diagnosed and treated i am doing pretty good, i still struggle, but i can live like this and achieve all the things i want to do.

Dysautonomia and HyperPOTS is a disease of the Autonomic Nervous System which controls all base functions in the body (heart rate,blood pressure,digestion, sweating etc.) HyperPOTS is characterized by Orthostatic intolerance or the fact that  when I stand up my blood pressure drops and I  often pass out. It is also responsible for the fact that my heart beats extremely fast at rest, my legs look like a zombie from blood pooling, and i have a hard time concentrating at times because enough blood doesn't get to my brain.

http://www.dynainc.org/dysautonomia/symptoms

Intestinal Failure:  My Large intestine failed when i was 12 years old. I went through many surgeries to try to fix it but nothing worked and i was fitted with an ilesotomy bag at 17. I underwent a total colectomy on March 17th 2013.. 

Have any questions? Inbox me!