I know these posts are lame and somewhat boring. I'm trying my hardest to make them somewhat entertaining, but really, this is some not so fun stuff to read but it must be shared to help you understand where I'm coming from! That, and I really feel like others who have gone through this will benefit knowing that others have suffered as well. I know I do, when I see others talking about their issues with this condition or others that are similar that leave the doctors clueless. That and if you're like me, I get a kick about reading about others issues. I don't enjoy their misery, I'm just intrigued in reading other people's accounts of their health journey.
Sometime In March
My birthday had come and gone, I was thankfully able to spend some time with friends at a hotel over night then do some shopping. It was a bit too much for me to do, but it was fun none-the-less.
After that weekend, though, reality came back and hit me hard. I was at a loss and had to wait until I could see my psychiatrist before anything more could continue on. I was low. Very, very low with morale and just my over all way of thinking and feeling. I felt like it was hopeless to continue on with this, and I was starting to believe the doctor. Nothing was wrong, right? The heart rate, the dizziness, the headache and the fatigue was just in my head! And when I was sitting, I'd feel just fine! At the time, of course, I didn't recognize the correlation between standing and sitting just yet.
The time finally came, however, to see my psychiatrist and I couldn't be more nervous. I was a ball of nerves. You could probably bounce me up and down like a bouncy ball due to how tense I was.
I honestly don't remember too much now about that appointment, but what really stands out is when my psychiatrist brought up POTS. He asked me if my symptoms got better laying down and if it happened when I stood up. I said yes, I hadn't thought of that, but it did feel better. So he tested my vitals within the office and it showed the POTS.
This set me off on a huge researching endeavor. I learned so much and the more I read, the more I realized this was ME. I was hell bent on making sure my doctor diagnosed me with this, because at this point I didn't know what else it could be. I called my doctor later and told her nurse what we thought it was and rather than talk back directly to me, they merely transferred me over to a cardiologist.
Now, I would separate this into another post, but I've already managed to get myself riled up about this appointment that I really need to get typing on it in here.
March 20th, 2014
This was the day of the cardiologist appointment. I was excited and I knew that I'd finally get answers. Or so I thought. We went in, my mom insisting to come along to this appointment. She was now thinking something was going on despite not believing me before. She was paying for the appointments, as was my dad, but I was pretty sure they were only doing it to prove me wrong, that nothing WAS wrong. This is something they do often, whether they realize it or not. They don't ever believe me when I say something's wrong due to making up stories as a child. They fail to see that I am now a young woman, no longer a teenager/child wanting to get out of class.
We do an EKG in the office, it was normal and the doctor comes in. Instead of testing the theory of my heart rate changing from sitting to standing, he starts to tell me about his own 'professional opinion' without doing any further testing or any kind of searching for what could be going on.
The conversation more or less went like this:
Well, unfortunately when we reach this point and everything comes back to normal, there isn't anything we can really do. You're healthy on paper, but yet we have the heart rate raising. It is more than likely Sinus Tachycardia, which changes during breathing in and out. All you can really do is exercise more and drink a lot. There isn't a need to check into this a bit more. I don't think it's POTS, we would have found that in the Holter Monitor testing.
Well as you can imagine, I was BEYOND pissed and by this point, I wasn't taking no for an answer anymore especially now that my mom was starting to side with the doctor rather than her daughter. I KNEW something was going on but no one would listen. I had HAD it. I kept pushing and pushing, insisting it was not with my breathing and that it ONLY happened when I stood up/sat up rather than lay down. Finally he said he'd have the nurse come back in and check my vitals laying, sitting and standing. Why he didn't do this in the first place, knowing the complaint was BEYOND me. As I said before, I'm not happy with this doctor's office in the slightest bit.
The nurse came in, and low and behold, my heart rate jumped up to 124 after I stood up. I don't remember what the resting heart rate was before that, but your heart rate shouldn't jump that high after standing.
The doctor came back in now, totally whistling a new tune. He admitted now that this was enough to diagnose POTS, but he still didn't do it. He decided we'd check my Cortisol by doing an Cortisol AM test to see if it was too high. He then suggested we go see an endocrinologist, thinking this might be hormone related due to the fact that I'd had pancreatitis so young and my lymph nodes were so swollen. Immediately, my mom and I didn't agree with this idea. We'd already tested all of my hormones, why did we need to go see an endocrinologist?
He also prescribed taking salt tablets to see if it would help.
So we're driving to the pharmacy to pick up the tablets, when we get a phone call from the doctor. He told us not to get them as he didn't feel we had enough evidence of anything being wrong to give me this. He didn't feel comfortable with it and he admitted he didn't know how to handle this as he didn't know what was going on.
On top of that, he was refusing to give me a doctor's note for my job, due to the fact that there wasn't enough wrong with me to keep me out of work when I wasn't able to work either.
Once again, we were back at square one and I was about to lose it. I called my psychiatrist and asked him for help, if he knew of anyone that could POSSIBLY help me with POTS. And then he told me the information that would be my saving grace. He told me about this clinic, that specialized with fainting and the heart, and that they might know how to help me. Something about this just told me we were finally on the right track, but I wasn't about to let my hopes climb sky high just yet.
So there you have it! Things were finally starting to look up after months of issues, and my job was AMAZING through out this, which I've failed to mention. They were very supportive.
We'll pick up again tomorrow, so I bid you adieu and wish you well!
- Rosie
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