I have been having some serious problems with my heart rate, pain, sleep problems, exercise intolerance, blah blah blah. Lots of troubles and no real answers. PLUS- I have been retaining water and over the last month I have gained 20 pounds of water weight!!! Not cool. I am insanely uncomfortable, I feel puffy and bloated, like my skin is too tight, and none of my clothes fit very well. That is really going to help put me in a better mood, right?
But, alas, I was able to get back in to the cardiologist, thanks in large part to Dr. Viera and my mom being pushy. Something is wrong and something needs to be done about that.
So today, my cardiologist tells me that I have Postural Orthostatic Tachycardia Syndrome (aka POTS)
YAY! A diagnosis!!
While there is no cure for POTS, it is manageable. It won't be an easy thing to get the ball rolling on recovery, but once I do, it will show a lot of improvement.
This meant another med change today. But I am ok with that since it is now for sure the right direction.
The hardest thing is going to be the exercise part of this. Since I have been feeling bad for so long, I haven't been exercising because I couldn't. I have no strength so I feel like I am starting from scratch. And I have to make sure I don't over-do things for so many reasons. Plus, having 20 EXTRA pounds is the worst feeling in the world and does NOT make moving around fun.
I am frustrated with the fact that this isn't something that can be cured, but at the same time is is very encouraging to know what we are dealing with now.
We might still be going to the Mayo Clinic to evaluate all of my interesting medical stuff. And I will be getting a sleep study done and starting physical therapy to start to recover from all of my cardiac setbacks.
It is crazy to think about, but I, and my mom, believe that I have had POTS for years now. The more we read, the more it sounds like what I have had to deal with for so many years. It is a huge relief to know what is wrong.
My cardiologist made sure he made it clear to me that this is a real disorder. It is not in my head and it is completely NORMAL and UNDERSTANDABLE that I can't work or do much of anything right now. He assured me it will get better, but I have to remember that, regardless of what people think they know, I know my body and I am right: Something is wrong, it is real, and it is not all in my head.
Oh, and this should completely resolve itself by the time I am 40. They don't know why, but it is usually seen in young women from teens through 35.
Oh, and this should completely resolve itself by the time I am 40. They don't know why, but it is usually seen in young women from teens through 35.
So, it seems, the tunnel is very long, but I think I am able to see an itty, bitty light at the end of it. Hopefully I don't forget that when I can't always see that over the next few months. . .
And this seems to fit my mood today:
I can't stand ignorant people who think that things like Fibromyalgia, Chronic Fatigue Syndrome, POTS, etc. aren't real and that it is all in our heads.
They are wrong.
Totally and completely wrong.
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