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

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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Comments (4)

  • Tonya

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    I was supposed to have a dr’s appointment today to talk sleep & my stomach but my dr had an emergency so it’s next Monday.

    I’m glad your at a good for you! I’m exercising so someday I will be standing :) I just got to 14 mins of doing the recumbent bike everyday!Slow & steady wins the race!

    The yoga/pots study is interesting! What is it supposed to do for POTS? Do you have to make modifications l with EDS?

    Reply

  • Katie

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    Tonya! Awesome! Keep it up! I remember being able to do one minute on the bike. I think the key is consistency…I don’t know anything more about the study…Bev just mentioned it. I’m interested too. Good luck on Monday!
    ~Katie

    Reply

  • Michelle

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    Too funny! My daughter and I were there the same day! Her apt was with Beverly too- at 11:00.

    Our drive is 6 hrs. So we came up the night before, paid for a hotel room and meals, saw Beverly for abt an hour, then drove 6 hrs home.

    My daughter and I both have EDS but she is the only one with pots. (thankfully)

    This is only our 2nd time in Toledo. Last time we saw Dr Grubb. My daughter said she would like to see him again. Is it normal to only see Dr Grubb once and then Beverly from that point on-or how does it work?

    Reply

    • Katie

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      Hi Michelle,

      When I saw Dr. Grubb, I just asked to see him when I called to make my appointment and they scheduled me with him. It was surprisingly easy. Let me know if I can help with anything else. Thanks for reaching out! ~Katie

      Reply

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