Wednesday, April 23, 2014

My POTS is like a diamond ~ Forever

I had a follow-up appointment with my electrophysiologist (cardiologist) today to see how my medication adjustment was going and to get my lab results. At my last visit he wanted to check my urine for elevated catecholamines to make sure that I did not have pheochromocytoma or some other carcinoid tumor causing my POTS.

Since my visit with him last month he had received the visit notes from the geneticist which diagnosed my Ehlers Danlos Syndrome. Prior to this I was only diagnosed with joint hypermobility syndrome so I think he was still assuming that my POTS had an unknown cause and wanted to do some further testing.

He walks into the room today and says, "Ehlers Danlos huh." His voice and body language spoke defeat. Not his own, that he couldn't use me as some mystery case lab rat, but rather mine. He had such empathy in his voice as he spoke about how young I am and that there is really nothing more that we can do other than what we are already doing. Unfortunately what we are doing is not really helping much.

The young part is relative. At 41 I am not young per say, but in the grand scheme of life I could have a really long time left to live with this. I try to think of everyday as a new beginning and hope for the best in each one. But, that is a whole lot of possible bedtimes hoping that tomorrow will be a better day and that I can muddle through. A daily dig for the diamond in the rough.

He had doubled my beta blocker last month and that was NOT working out at all. The side effects were more than I was able to deal with. I felt like I had zero blood making it beyond my knees and that is not good if you want your brain to have even a random firing, not to mention the endless chest pain. I did learn during that time that I am better off if I take my dose at night instead of in the mornings. It helps knock a bit of the top off of the early morning symptoms when I am usually having my highest heart rate issues. Small progress is still progress. Any little bit helps.

Since my DNA is not going to be recoded anytime soon and I will continue to produce crappy collagen, I might as well just get use to this craptastic syndrome infested body of mine. I suppose I had better just pull up my big girl "compression stockings" and get on with it.

It is never a real joyful hope-filled experience to have it reconfirmed by yet another specialist that this is ~ Forever. However it is helpful in making me realize that I need accept my limitations and tackle them head on. Okay, tackle might be a little overambitious. See what I mean, limitations are so hard for me. How about slingshot rocks from the couch.

photo via Pinterest
See, all of the crushing pressure (stress) and extreme temperature changes (thermodysregulation) can create beauty after all. I just have to dig deep down to find it.

Diamonds are Forever!


  1. Hiya,
    I too suffer with POTS / severe autonomic nervous system dysfunction and EDS. I was interested reading your post as I too suffer with breathing difficulties. I seem to randomly desaturate or just forget to breathe for 60-90 seconds! I have home oxygen to help me and it also helps when the tachycardia won't settle down even with complete bed rest.
    I am now trailing the drug octreotide through subcutaneous injections. I've tried all other medications but nothing works.
    I'm sorry you are having breathing problems to. I hope it helps to know you aren't alone in all of this.

    1. Rachel, I too am sorry that you have to deal with the whole bag full of symptoms that come along with our diagnoses. Thank you for reaching out. It sure is nice to know I am not alone because these are really hard things to understand if you are not living them. I sure hope your new medication gives you some relief. I have not heard of it so of course now I am off to let google tell me all about it. Thank you for your kind comment, but again I am sorry you are going through the same things.

  2. I am a new homeschooler, just hoppin by. I just wanted to share that I was healed after 7 years from my Chronic Illness. Continue to thank the Lord for your healing until it manifest itself...even when your feeling lousy. I just want to remind you: There is nothing impossible for the Lord, Have a Fabulous Day!


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