Another Diagnosis

Most times new diagnoses don’t surprise me because I know its coming. I know way before my doctors when another illness has invaded. It usually doesn’t take long for me to readjust. I educate myself on my new illness; make any changes I can. Then move on and fight like a girl.

A few days ago I got a diagnosis that shook my world. It wasn’t a surprise but its a lot to wrap my head around at the moment. I have not been the same sense leaving the hospital. Things keep sparling out of control. I have Postural Orthostatic Tachycardia Syndrome. POTS effects multiple systems like Lupus.  My body is confused to say the least. It is having a hard time with involuntary functions such as regulating blood pressure and heart rate. I have an extensive history of passing out and having dizzy spells which is part of POTS. Lately I have been collapsing frequently as well. From what I know about POTS, it makes sense with my newer symptoms.

I have been spoiled by the Lupus foundation. They are very on top of things, give out information packets, I was able to speak with different people, and they have so many educational resources. In addition there are wonderful pages to like on Facebook and Lupus has some of the best support groups on Facebook. The Facebook support groups have been a blessing. I’m in a few. My first support group, Teens with Lupus, will always be my favorite. I have not found enough information about POTS. I love to know every detail about my illnesses so I know what symptoms go with what illness.

Once again I am in an adjustment period, learning the ropes with POTS. I know I am going to need to relearn how to do various daily activities. I am looking forward to speaking with my doctors about a new treatment plan. My prednisone has been increased because of my Lupus flare. Hopefully we can talk about replacing it with something else in addition to POTS medication. I hope you’re having a great day. Sending spoons, hugs, & prayers.

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2 thoughts on “Another Diagnosis

  1. Hello Victoria! I’m sorry that you are having to deal with POTS- it’s my main chronic illness and it can be a real pain. Information can be hard to find sometimes. Two good places to look are http://www.dysautonomiainternational.org and http://www.dynainc.org Both are friendly and fact filled and have Facebook groups and forms of support networks that you can get involved with. Lots of ((spoonie hugs)) to you as you figure out this part of your journey! ~Nic

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