Lately I have been feeling more down trodden then normal about my disorder POTS. So I decided to see if youtube could lend some support. Sure enough I found these amazing videos. I can't tell how often I have felt %100 of what these people are saying. It made me feel so much better to watch these videos. I'm not gonna lie, I totally cried a couple times feeling the comfort of understanding, I urge you to please watch these videos. Not just for me but for the people in your life who may have this disorder and are still not diagnosed. It took me 2 and a half years of tests that came back odd or wrong but with no explanation. 2 and a half years of doctors telling me that maybe I just need to switch my birth control or consider the fact that it's all in my head. 2 and a half years, no I lied, this part still goes on and I believe it will go on forever, of people, some who are supposed to love me, thinking that I'm lazy, crazy, too emotional, wanting for attention or depressed instead of being sick. It was eventually a coworker who has a sister in law with the same disorder that suggested POTS to me. Tender mercy. If more people knew about this it may have only taken 6 months to reach a diagnosis.
Best video about POTS part 1
I know they aren't short but please, I beg of you, watch them all. 90% of my friends and family still have no idea what is wrong with me and I feel like you don't care. You can't see anything wrong with me so that must mean it's not that big of deal. There is nothing further from the truth. I say these things and put them in writing so that if you have POTS and you are reading this, you know that you are not the only one who has felt that way.
part 2
During my tilt table test, they only raised me to 70 degrees. My resting/laying down for 20 min, heart rate was 80 BPM. It took only 4 minutes to reach 182 BPM. That's an increase of over 100 BPM, I an a very severe case of POTS. When you hear them talk about 20% or 30% etc of of POTS patients suffering from certain symptoms or related disorders, I always fall into that percentage. To those of you out there who also fall into those ranges, you are not alone. After about 12 min at 70% elevation my heart rate started to enter the 200 BPM ( heart attack range). My doctor who was awful still wanted to see me lose consciousness. Needless to say, I didn't like him very much. Fortunately he was not the one performing my test. The doctor in the hospital decided I was too much at risk and lowered me without actually seeing me pass out.
Part 3
Please know this is not a plea for sympathy. It is a plea for you to educate yourselves a little about POTS so that, hopefully, you can be someone else's tender mercy.
1 comment:
Hey Callie! thanks for posting these videos! I am glad to know a little more about how POTS works. All the time I hear of people who are just ill all the time and I think: "I wonder if they have what Callie has?" So now I know more! My heart is with you and I still miss you every week. You are one of my truest friends!
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