My Health

August 25, 2014

My health has never been that great but in 2009, it all got a lot worse. Out of the blue, I started getting extreme hip pain. I've always been use to pain but this was different, it hurt to do anything. We went to my doctor and he did a bunch of blood work, one of which was Lyme disease. At that time, they said that it was impossible to get Lyme in North Carolina, but my doctor being the doctor he was, he tested me for it anyways. And that is what it was. 

I was treated with antibiotics and it went away but by the time 2010 came around, I was still getting the hip pain. At this time I was a competitive swimmer, and a very good one. He ordered X-Rays for my hips and the technicians said they were normal so he did some more blood work which reviled that I had a autoimmune disease. 

For those who don't know, an autoimmune disease is when your own immune system attacks your body like it's a virus. 

My doctor sent me up to Duke to see a rheumatologist and they asked to see my hip X-Rays. When they reviewed them, they discovered that my pubic symphysis was spread apart and unaligned, which was causing my pain. I got a lot of physical therapy but still had to eventually quite swimming. 

In 2011, I had been having a lot of stomach problems and that turned out to be my gallbladder. I was unable to eat anything unless it had hardly any fat in it or I would get extremely nauseous. I had to get my gallbladder removed because it was barely working but when they did my pre-op blood work, they discovered my creatinine was high, which meant something was wrong with my kidneys. So 10 days before my surgery, I had to get a kidney biopsy which reviled I had a rare disease called Oligomeganephronia. In other words, the filters in my kidneys are double the size and I only have half the amount I should have. 

As you can see, it was just one thing after another. I was stable for for a year or two before things started getting really bad.

In 2012, I was in Florida with my mom and Uncle and we were walking around when I started getting extremely lightheaded. We had to go grab a cold water and sit in Starbucks for a while. After coming home from Florida, it still happened once in a while so we mentioned it to my doctor. He said he thought that I had a type of dysautonomia which is a problem with your autonomic system, which controls everything you don't think about. Heart rate, blood pressure, pupil size, you get it. So I went to Duke again but to see a Cardiologist this time. I had to get a tilt table test. It was honestly one of the most awful things I've ever been through. All they really do is strap you to a table and tilt it up to 90%, don't worry, you can't fall off. For anyone with a for of dysautonomia, its pretty much torture. My heart rate went to 160 and my blood pressure dropped to 60/30. I felt like I was going to be sick, pass out and stop breathing all at once. The also measured the blood flow to my brain which decreased by 50% when they tilted me up. The official diagnosis was Postural Orthostatic Tachycardia Syndrome (POTS). When I stand, my HR goes up and BP drops. 

It took me over a month to recover from the tilt table test but I eventually recovered. By this point, I had left school during my Junior year because I was missing so much and unable to concentrate because of POTS. Another year went buy but I was still having other symptoms. I had a lot of stomach problems, all my joints were loose, all over joint pain, and the list goes on. I'll skip all the boring stuff. Just a few months ago in June, I went to see a geneticist who diagnosed me EDS type 3. We had known that was probably what I had for about a year but to officially get diagnosed was so nice. There was no more guessing, or trying to get doctors to believe me, or any of that. It was great. Although EDS is not a good diagnosis, it was nice to know for sure that is what I have. 

EDS is a genetic condition which makes your collagen very loose. This causes your joints to be hyper mobile or sub lax and dislocate frequently. It also causes stretchy skin, bad scars, and many other things. 

This is pretty much my health story. Although it's not everything, it is most of it. Thank you for reading.

No comments:

Post a Comment