Life Update

         The corona virus seems to be all anyone has been talking about for the last couple of weeks. It spread all over the world pretty quickly causing a lot of fear about health. I'm not here to talk about to talk about how you should feel about the measures that are being taken to help “flatten the curve”. I’m here to talk about more personal things that I’ve been tight lipped about over the last few years. This just seems like a good time to do it as everyone has been talking about health and who is at risk of the corona virus.

               Many of you may have noticed that after I graduated college I kind of went MIA. I stopped talking about my life on social media and other wise. When questioned what I was going to do now that I've graduated, I gave noncommittal answers like “I’m weighing my options.” I didn’t want to talk about it. I didn’t want to explain myself. I still don’t for that matter, but I don't want to keep my whole life a secret forever.

               I realize that if you’ve made it this far without getting bored and clicking away that you may be a little confused as to what I’m talking about if you aren’t one of the people I’ve shared this information with since this all started. It will make the most sense if I start from the beginning and hopefully by the end you will understand what I’ve been going through, why I haven’t talked about it, and why I probably won’t on a very regular basis after this.

               Fall 2017 was my senior year of college. I was working football for my degree in athletic training. This sport is the most time and labor intensive out of all the sports we had at Hardin-Simmons. I was probably the best shape of my life, and that is including the eight years that I was in gymnastics. Around Halloween I started kind of feeling lightheaded and was having a little bit of tachycardia, but nothing terrible. Things escalated quickly though.

               The day after Halloween I went home to eat lunch after class and to get changed to go to clinic. I had been pretty stressed that day with some things that I had going on, so I assumed my incredibly high heart rate and shortness of breath was a stress response. I went on to clinic and figured getting my mind off things would help. Spoiler alert: it didn’t. I ended up having to leaved practice early and get oxygen.

               The next day after I had gotten some sleep, I felt terrible. My heart was still racing, I felt like I couldn’t get a good breath of air, and I was so lightheaded. So, I called my doctor, concerned that a panic attack shouldn’t be affecting me like that. His nurse refused to make me an appointment and told me to go get some counseling. At that point I was sure it wasn't just anxiety. 

               I went to class that day and more or less laid down on the table (exam table for one of my AT classes) the whole time, unable to really pay close attention. After class my professor showed some concern and asked what was going on. I told him everything that had happened up to that point and that I was going to have my dad call my doctor and see if they would listen to him. My professor agreed that I needed to get in with my doctor, I didn’t look good.

               That afternoon when my dad got off work we went ahead and went to the urgent care clinic because I felt so terrible and was honestly kind of scared – yet I didn’t feel like it was an emergency to need to go to the ER. They diagnosed me with a sinus infection, but couldn’t explain my other symptoms and told me to get in with my primary care doc.

               Over the next few weeks, I had two ER visits and saw my doctor more times than I ever had in my life having tests ordered trying to figure out what was going on. Luckily, he believed that there was something, (unlike his nurse) he just couldn’t figure out what it was. Once he decided he was in over his head, he referred me to my current doctor.

Since I'd gotten in with my new doctor who has finally figured out the first part of all my health conditions. He diagnosed me with a condition called Postural Orthostatic Tachycardia Syndrome (aka POTS). This is a condition under the dysautonomia umbrella, or a condition affecting the autonomic nervous system. The autonomic nervous system controls the things that you don’t think about: heart rate, digestion, breathing… And POTS is just the beginning. (At the end I’ll give I full list of conditions and what they are.)

At this point you know at least how all of this started and the most basic description of my illness. Now I’m going to explain why I don’t talk about it. Everyone has an opinion. Everyone has this friend who had (fill in the blank) who did (fill in the blank) and got better. Everyone has this doctor who knows everything and can cure you. Or there is the person who is just convince that you are going to die and has to gush to you about how terrible it is for you. These are all things that I have experienced over things that aren’t even considered a debilitating chronic illness.

I have a degree in athletic training. Many people do not know or understand this, but athletic training is in the medical field. I have taken that anatomy and physiology courses. I can do the research and understand it too. I have a better understanding of POTS than most doctors because it is a condition that is not taught in medical schools. I was a blessing from God that my doctor had encountered POTS while he was in his residency to be able to diagnose me and help me with it. POTS is a condition that does not go away. It’s something that I am going to have for the rest of my life. It can be managed, and that is something that I am working on with my doctor – and that is between me and my doctor. Because unfortunately, at the moment, it is not controlled. I also know exactly how it feels to be chronically ill and don’t need to be told about it.

After I finished college, I became a disabled person. I stay home with my dog, TinkerBell, and do things only as I feel up to them. I rest for a few days to prepare for events and outings, and it can take days to weeks to recover from them. As I feel up to it, I like to take makeup and fashion pictures to post on Instagram, but that takes more work than you would think, so it only happens sporadically. Most days are spent at home with no makeup on, hair undone, in PJ’s laying on the couch. I’m not saying this to make you feel bad for me, I’m just trying to describe life with chronic illness. 

Going under quarantine with this corona virus hasn’t changed just a whole lot for me as I stay at home for the most part anyway, but I am in the at risk category for it so I’ve been using extra hand sanitizer 😊. I also want to put out there that I am not against answering questions, but I do not need unsolicited advice.

               As promised above, here I’ll put a list of the conditions that I have been diagnosed with:
              

•         POTS: Postural Orthostatic Tachycardia Syndrome:  POTS is a form of orthostatic intolerance that is associated with the presence of excessive tachycardia and many other symptoms upon standing. – Dysautonomia International
•         Hypermobile Ehlers Danlos Syndrome (hEDS):   Hypermobile Ehlers-Danlos syndrome is an inherited connective tissue disorder that is caused by defects in a protein called collagen. – NIH

o   Temporal mandibular joint disorder (TMJ)

o   Cubital tunnel

o   Easy joint subluxations

•         Fibromyalgia
•        Irritable Bowel Syndrome

o   Hiatal hernia

•         Migraines 
•         Fatty liver disease