This SHOULD be the last post about this, and then we'll get going on my day to day ramblings. I'm exhausted right now, so I'm not sure this will be a great post. I went to the gym today after getting a small tattoo (which wore me out in itself due to the nerves over it. I've gotten three and I still freak). I did thirty minutes of cardio and then another thirty of weight training. Needless to say, it was an exhausting day. So let's get on with the show, yes?
April 30th, 2014
The time between my psych appointment and waiting for the appointment that would finally help me was TORTURE. I was so impatient and thankfully it was far enough away that I eventually forgot about it. Well, the week before my appointment, my body decided it was a wonderful time to get MONO. I was freaking out at this point, that I'd be too sick to go to that appointment. I ended up in urgent care on Sunday, the weekend before my week of dealing with Mono. Due to my POTS, I was terribly dehydrated and had to get an IV for fluids. I felt a lot better afterwards but my throat was still sore. I ended up back in Urgent Care that Wednesday, finally getting diagnosed with Mono. This made my POTS symptoms flare up terribly, and I have never felt sicker. I was bedridden the entire week and sore near my spleen as well as my liver. This was just a mild case of mono with POTS, so I really don't want to know what a severe case would have been.
I asked the doctor if I could still do my appointment on the 30th and I made it quite clear how important this was. She said I could as long as I felt up to it. I made it my personal goal to make sure that I would be at that appointment. And I did! I was still really sick, had a fever going in but I was feeling a bit better... In terms of sickness, that is.
By this point, my nerves had started to spaz again, making me think that this appointment would be an utter failure just as the others were. Especially because Mono was making my POTS act weirdly. A few days before that weekend, my heart rate had been almost at 200 BPM near constantly, then randomly that weekend it started acting NORMAL. I was worried we'd go in and they wouldn't see anything.
We get to the appointment at the hospital and I had to fill out the questionnaire about previous health as well as heart conditions in our family. They took me back to do an EKG and shortly after it, we found out that my heart was already displaying my symptoms. My EKG had registered as "Sinus Tachycardia, but otherwise normal". I got a little excited at this point, but did my best to keep my cool. I didn't want to think anything of it until we saw the actual doctor.
We headed back into the room now, and the nurse came in to do the medication, allergies, etc. questioning then we moved onto testing my BP and heart rate while sitting and standing. We didn't even do it at the desk as per usual, we just went straight to testing the complaint of POTS. This pleased me thoroughly, but I was once again concerned that nothing would show up.
I WAS WORRIED FOR NOTHING, LET ME TELL YOU!
Resting heart rate while laying down. due to being sick, was at 102. The MOMENT I stood up, it jumped all the way to 132. The nurse said this was definitely indication of POTS but she was a nurse, she couldn't really see anything. By now, my mom and I were grinning excitedly but I still wouldn't let myself get hooked on this finally being the day I got answers.
The nurse practitioner came in and started going through a lengthy interview process with me. She told me afterwards, that some of my symptoms coincided with POTS but I knew all of them did. I wasn't going to say anything to her, of course, because doctors and nurses don't like when the patient acts like they know more (when honestly, I did know more than she did and it was obvious). She said the doctor might want to do a tilt table test but they'd for sure be doing an echo cardiogram.
The doctor finally came in and he thought I said something about my symptoms that I did not, which led him to think I had something called Vasovagel. I'm not sure still what this is, but we looked into it and it was NOT me. He wanted to do a tilt table test to check for this but said that treatment for POTS and this condition were pretty much the same. He said I had POTS, there was no question because we'd had three different instances of it showing up and that was enough to diagnose it. He said we could do the tilt table to check for the Vasovagel but that was all we'd need it for. Seeing as how I didn't have those symptoms for that, even though POTS and this condition fall hand in hand, we decided tilt table was unnecessary.
So we'd gotten me medication and salt tablets, which the medication sucked. We can get into that in another post, and we also got the letter in the mail today explaining the situation. I had called later the day of the appointment because they didn't put this diagnosis down for me which was upsetting after the months we'd gone through to get it... And we finally got the letter they'd told us we'd get today, but it said something along the lines of "your symptoms do coincide with POTS and you do have two instances to back this up, but we did not do the tilt table to confirm this diagnosis". So they still didn't give a definite answer, but sent information about POTS to us to learn more about it. Which I don't really need, I know a lot already. It was just aggravating that they still didn't give it as a definite diagnosis, even though the doctor said I had it.
Either way, I have it ON PAPER now that I have POTS (even if it's not saying it word for word), and that's all I care about. My nightmare had FINALLY ended and I was happy. Well, I AM happy. Pretty dang happy if I do say so myself, but now comes the harder part... Learning to deal with a chronic illness and the trouble it will bring into my life.
So that's my story! That was my awful, awful journey through diagnosing but even though it was sucky, I really can't complain. This is amazing to get diagnosed so quickly. Usually it takes at least a year or so before someone gets answers. It's taken even a decade to get answers for others too.
Until next time, readers, and I wish you well!
- Rosie
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