Just a "zebra" trying my best to live life to the fullest with EDS and POTS...and loving the ride.

Short and Sweet

Written by Katie. Posted in POTS Appointments, POTS Awareness

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I spent the day at the University of Toledo to see the wonderful Dr. Bev for my 6 months POTS check-up.

We drove 2 hours.  Waited 2 hours.  Saw Bev for 25 minutes.  And drove home 2 hours.

Usually I see Bev or Dr. Grubb for over an hour, so 25 minutes may have seemed like I was jipped today.  But those 25 minutes were worth it. Actually 25 minutes is a good thing~a great thing.  It means I am as stable as I can expect to be with POTS for now.

I guess if I was trying to define “stable” for POTS and for ME (since all of us POTSy’s are different), it would mean my days are typically a lot alike.  My mornings are best, my afternoons are the hardest, and I am doing okay at night.  I am able to do some cardio, I know I can work half-time most days, I am out of my wheelchair most of the time, I have found ways to better manage the disease, and I have not gotten worse since my last appointment 7 months ago.

As Brad has deemed it, “The List,” was also a good indicator that I am managing okay.

At every doctor’s appointment, I bring a list of questions, things I have researched, and topics I want to discuss.  I have come a long way as a patient because I used to apologize for “The List.”  Now, I make sure I am able to go through it all, realizing that a) the doctors work for the patients, and b) if I don’t ask the questions or bring up the topics no one else will.  I am of the mind frame that these diseases are confusing enough so it is up to me to be as educated as I can about them.

Anyways, my list at this appointment only had 6 things. That is a major record, my friends.  Even Brad and Bev were in disbelief.

These were the basics of my appointment:

  • I will “up” my dosage of Midodrine (again) to see if my afternoon fatigue and overall POTSy-ness improves.  Hopefully increasing the dosage will help to better stabilize my blood pressure.  (Midodrine is the vaso-constrictor I take that helps constrict my blood vessels so the blood gets to where it needs to go).
  •  I was given a prescription to get an echo done at my local hospital.  I have to have a yearly echo to check for Mitral Valve Prolapse, which is a risk for all people with EDS.
  • We discussed swimming.  I explained that I feel great while I am swimming, but after I get out of the pool, I become super sick.  Bev said that that was understandable because the cool water acts as a “compression suit,” and constricts my blood vessels while I am in the water, so once I am out of the water and my body is required to adjust to the gravity, my blood vessels expand and I am having pooling issues, which does not allow enough blood to get to my brain.  To help with this, I am to try increasing my Midodrine if I know I will be getting into the water.
  • Bev will be conducting a study about patients with POTS who do yoga.  After she designs it, I may be a person of study.
  • Bev thinks the headaches I get are partly because of POTS and partly because of EDS.  She recommended cranial-therapy, which I am actually doing bi-weekly (and I love BTW), as well as she offered letting me try muscle relaxers. I quickly declined.  I did that before and me on muscle relaxers is bad, bad news.
  • I am to never, ever stop exercising.  It is through exercise alone, that I am able to function most of the time.  I heard Bev loud and clear on that one.  It really is true that “I exercise so I can stand up.”
  • I go back in 6 months.
I told ya.  Short and sweet.

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