21 months ago, I sat in Dr. Patel's office and heard four words that would change my life forever-"Ashley, you have POTS."
POTS stands for Postural Orthostatic Tachycardia Syndrome. POTS is a part of the autonomic nervous system (ANS) doesn't work properly, so therefore all the things your body does properly and without you thinking about, my body can't do or can't do well. My heart doesn't work properly in pumping blood so therefore my brain doesn't receive enough blood. I have low blood pressure and a high heart rate-a dangerous combination. Due to my ANS not working properly, all of my major organ systems can't function properly. This causes me to be extremely fatigued (it's comparable to living with mono every day) because essentially my body is fighting itself. Along with passing out regularly, some of my other symptoms are: twitching episodes, lightheadeness, debilitating fatigue, hot/cold sweats, excessive sweating, nausea, vomiting, bloating, headaches, exercise intolerance, cognitive impairment, muscle weakness, anxiety, depression...the list continues. In addition, I have sleep apnea, delayed sleep phase disorder, chronic fatigue, chronic pain and fibromyalgia, Oh and did I mention I'm only 16? As frustrating as POTS is, its weird looking back and seeing all the things that lead up to my diagnosis, it was almost as if they were clues to a puzzle but we didn't quite know what the big picture was supposed to look like/would look like.
When I was in the 5th grade, my brother Ryan had a doctor's appointment and for some reason I had to go with him & my dad. Some my say it was fate, I say it was God's perfect timing-for here is where my POTS journey began. After the doctor was done addressing Ryan for his ADD somehow my lack of attention span also came up. At first they diagnosed me as having ADD, but after trying medication for that and seeing no results, he decided to test me for sleep disorders. Maybe the reason I was having trouble focusing was because I was tired? After my first sleep study (first of nine, yes nine), they diagnosed me with sleep apnea. I was having 20-something apnea's per hour. (That means my brain was waking up 20 times a hour, not my body, just my brain, thus the reason I wasn't getting good sleep) I used a sleep machine for over three years and had my tonsils removed, yet I was still tired. My doctor was confused as my test results showed I was getting better but I was still exhausted.
Meanwhile, in 7th grade (to give you a time reference I had been using the sleep machine for probably about a year now), I began to get the weirdest, most bizarre injuries. Over the course of two years, I had 24 injuries. Probably the weirdest one is I tore three tendons in my foot while standing in a swimming pool at a camp and I ended up in a boot for a month. How that happened is still a mystery to me. Me, my parents and my basketball coaches began to get frustrated-I was NEVER healthy. We were always going to the doctor to have them look at this injury or moving from one PT appointment to the next. Next came the serious back and knee problems, both which doctors could not figure out why they were causing me so much pain. I tried Arrosti, physical therapy, kineso tape. steriod shots and had countless x rays, MRI's and bone scans....yet nothing. Why was I still in pain?!
Also, I had passed out several times in the span six months (end of 8th grade, beginning of 9th). Once in an orchestra practice room, once at Six Flags and twice in my best friend's bathroom while getting ready for freshman Homecoming. The strange thing was that there was no reasoning to why I was passing out. My parents were concerned (and rightfully so!) so they took me to a neurologist. In the appointment, I passed the routine neruo exam and the doctor didn't see any reasons why I was passing out. He told my parents I may be crazy and to drink more water. That just didn't seem quite right to us.
On the night of January 20th, I spent the night at a friends house. Little did I know when I woke up the next morning that my POTS was going to manifest. I woke up on the 21st and felt rundown and tired. However, it was Sunday and I was teaching Sunday School that day-wasn't going to miss out on that. My dad (he's the student minister at our church) mentioned that I seemed a little off during my talk. I started feeling even worse on the car ride home, and when I got home I layed on the couch and fell asleep-for six hours-during the NFL divisional playoffs. (That's a big deal in my life because I absolutely LOVE sports). I woke up, and typical me, was freaking out about all the homework I needed to get done in preparation for the upcoming week. Instead my parents told me to go to sleep and that I wouldn't be going to school the next day. (which I was not excited about, I didn't want to get behind!) That week, I didn't go to school at all and slept for 18 out of the 24 hours a day and felt absolutely awful. I didn't want to talk to anyone, watch TV, get out of the house, didn't even try to do my school work-I just wanted to sleep forever. That week, we went to the pediatrician because we were sure I had mono, why else would I be this tired? Mono test-negative. Strep test-negative. Flu test-negative. They told me it was just a virus and to wait it out.
The next week I went back to school, but only for a few periods a day. I wasn't happy about that as the make up work was piling up, but physically my body couldn't do it. Just walking from class to class absolutely exhausted me. Within three days, I was back at home, sleeping, and back to the pediatrician to be tested for mono, strep and the flu. Again, all negative. This pattern of going back to school and then having to stay home for several days and then going to the doctor only to get negative test results continued for over a month.
President's Day of 2012 was my appointment with Dr. Mehendra Patel. My sleep apnea doctor sent me to Dr. Patel because he was simply out of options and he didn't know what to do. Dr. Patel is known as the "what's this" doctor and tries to solve cases other doctors can't. (An ode to Dr. Patel will be another post another day) We had been waiting for this appointment for eight months and God couldn't have placed it a better point. By this time, I had been pulled out of school because my body psychically couldn't do it and anymore absences would result in me losing credit and having to repeat my freshman year. (The topic of Homebound will also be a separate post) At this time also, I went from a muscular and athletic 140 pound body to a frail, skin and bones 120 pound body-in one month. I dropped from a size 4 jean to a size 00. All my clothes were useless. So here my parents & I were, with me extremely sick-but not knowing why or what was wrong with me.
We spent a hour and a half talking to Patel that day. We explained my story from the beginning, and talked about the drastic change I had gone through in the last month. Before my illness, I was a straight A student in all Pre-AP classes, played basketball at school, was in the orchestra, volunteered every Sunday at my church and let an active social life. I'm an extrovert, type A personality, overachiever who always wants to be around people and doing something. In the last month, I hadn't attended school on a regular basis, dropped 20 pounds, could barley walk and was lonely and depressed. He drew 14 tubes of blood (Needles will be another topic) and ordered a brain MRI and a table tilt test. (both separate posts). We left that appointment with a small amount of hope-at least he was testing for new things we hadn't before. At this point, it was almost as if we were wanting a test to be positive, at least that way we could know what to do to help me feel better.
After a month of waiting for test results and running tests, we returned to Dr. Patel's office on March 21st and on this day I was diagnosed. As we walked into his office it was a Wednesday, which was a chemo day. (He's a pediatric rhuemotologist/oncologist by trade so in office chemo treatments are three days a week) All around me were kids with shaved heads and ports with their parents prepared to get yet another round of chemo treatment as they were fighting for their lives. I feel like in some way now that perhaps this was God's way of showing me to be thankful for what I do have and preparing me to have a grateful heart for the words I was about to hear. A nurse called us back and instead of going to a room my parents & I went into his office which was the first sign to me that something was wrong. About 20 minutes later, Dr. Patel entered his office.
Dr. Patel who is normally a cheery, joking person was very somber and serious. He sat down and read over my test results, which all ultimately lead up to my diagnosis-POTS. When he first told us what I had my parents and I sat there in shock. We had never heard of this syndrome before, and as he began to explain it we realized how serious and severe it was. Of course, we asked him if there was a cure and we were even more disappointed when he told us that there was no cure. POTS is "incurable but treatable". The good news he said is that I may grow out of it in my late-20's which was the small glimmer of hope in that bleak and dark day. I began crying the more as he explained my syndrome, even though I didn't fully understand (and don't think I will ever will) the extent of what that diagnosis meant.
My dad has told me hearing that news was similar to the reaction he had when he heard about 9/11. In the moment when you hear the initial news you understand that it's big and will have a large impact in your life, but you don't understand how big of an impact it'll have until you're a) out of the initial stage of shock and b) the longer that event is in your life. To this day, I still don't think I've realized how much POTS has affected me and changed me. Just recently, I started realizing that it'll take me at least six years to graduate college, I won't be able to go to grad school right out of college, my parents will probably have to support me for the rest of my life, I may not be able to drive until I'm almost 30, the list goes on and on. All things that didn't even cross my mind or my parent's mind when I was diagnosed. This syndrome has single handily changed not only my life, but my parents lives, my siblings lives and significantly impacted my friends lives and all others I come into contact with.
My dad had mentioned to me that I start this blog a few months after I was diagnosed, simply because it could be a good way to express myself and I've always enjoyed writing and helping others. That was over a year and a half ago, so why am I starting it now you ask? I feel as if God has encouraged me to do this and pushed me to do so. One of the things I've learned through out all of this is that when God leads the way you follow. I'm terrified to be beginning this blog, to say the least. I have serious trust issues (yes, that will be another post) and this blog is exposing myself on a whole new level. On Facebook, Twitter, Caring Bridge, Instagram I try to be mostly positive but in reality none of those social networks are an accurate representation of the life that I actually lead.
My dad told me that if I ever was to start a blog that I should be honest, so that's what I'm going to try to do. I'll be the first to tell you that having a chronic illness such as POTS sucks..it sucks a lot actually. There's more bad days than good, and more sad tears than happy tears. However, my hope is that with the blog I'm able to help people. Not just people with POTS or chronic illness, but rather anyone and everyone who visits my blog. I want to give my friends and family an insight into what actually goes on in my life and what actually goes through my head. I hope to help those with a chronic illness, but also those who are trying to understand what POTS is, or their friends and family who may be trying to understand what their loved one's diagnosis means for their life. I hope to post about real topics that anyone can relate to and I hope to be down to earth. I hope for my posts to encourage believers and non-believers. I hope all in all that my blog is helpful and inspiring.
Welcome to my life, welcome to my heart, welcome to my thoughts, welcome to my journey, welcome to my story,
