Chronic Illness Chronicles

For as long as I can remember I have struggled with stomach problems, mostly constipation. I remember struggling for days and being in such intense pain. Missing recess and other things a child sees as important, because of my stomach. 

For as long as I can remember I have had severe allergies and asthma. I always joked that I was “allergic to life”, if only I knew that that would become my reality. 

For about 10 years I really struggled with feeling dizzy, blacking out when I stood up, feeling off but not being able to explain it, having days where I felt like I couldn’t see but my vision was perfectly fine. And it only got worse with time. 

For as long as I can remember I have been “double jointed” I thought it was so cool! I would always show my friends and use that as my “fun fact” for an icebreaker in a new class. If only I had realized what being hypermobile entailed at the time. 

All of my life I have been an athlete, and a damn good one. I was a figure skater from the time I could walk until my junior year of high school when I broke my hips (this is foreshadowing). I was heartbroken when I had to stop, figure skating was my passion. I also played softball from 6years old-19 but I still coach and pitch occasionally. I was also a college athlete, I played field hockey. I started and played every minute of every game. There was also soccer, basketball, track, cross country, hockey, dance, that I played at some point in my childhood but softball, figure skating and field hockey were my main three.

 I know you are probably wondering “what does sports have to do with you being diagnosed” but it actually has a huge role. Without sports and my strength and being in shape, I would have been incredibly sick starting a lot sooner in my life. In many ways, sports helped me realize that something was wrong. A big part of being an athlete is being strong, physically and mentally. We are conditioned to play through our pain, injuries, and other struggles. I was one of those athletes that played through injury and illness. I remember being 10/11 and having a flu but my team was in the championship so I slept in between innings and then went out to pitch. I played a whole field hockey season on 2 broken hips… ouch. Sports saved me. It wasn’t until my sophomore year of college, fall 2017, that I realized I needed to stop playing college field hockey. I was experiencing very severe stomach pain, not able to go to the bathroom, intense bloating, I was constantly uncomfortable. But I was conditioned to keep pushing. In this case, that was not beneficial. I ended up in the hospital for a week, no food, no water in case I needed emergency surgery. When I was in the hospital I was told I have appendicitis and colitis, but because my colon was so inflamed they could not take my appendix out due to risk of death during surgery. I had high fevers, nothing was bringing them down. While in the hospital I was told it may be Chron’s Disease and if that was the case then I would not be able to have an appendectomy at all. At the end of this hospital trip I left with all my organs and had surgery scheduled for 2 months later. So I continued to be in severe pain for two months while I waited. Going into surgery they told me they may not take my appendix out if it looks like Chrons, I woke up and they had taken it out, phew! Or so I thought.. This was the start to the downward spiral of my health. 

A few months after my surgery I began to get symptoms again, horrible pain, GI issues, severe bloating so bad if anything touched my stomach I could cry from pain, and remember I played an entire season with TWO broken hips so I can handle pain. My dizziness was worsening, and I had no appetite. My doctor told me “maybe it is Crohn’s lets do more testing” so every 3-4 months I went back to my GI and they ran different tests(SIBO, MRIs, Blood tests,stool samples,Colonoscoppies, endoscopies,etc) put me on new diets that were so restrictive(FODMAP), and continued to tell me “your tests are normal”. But I never found relief. 

I lived in a constant state of pain, discomfort, lack of nutrition, fatigue, fear, and much more. I reached a point where I gave up and just dealt with staying in as often as possible so I always had a toilet nearby; such an ideal way to live. Then COVID hit 3 years after my surgery, and I was much less active than I usually was, which lets be real who wasn’t. In September of 2020 my symptoms got even worse. I know it’s hard to believe. Not only was I still dealing with stomach issues but my dizziness was at an all time high. I crashed my car twice because whenever I moved my head everything moved, so I stopped driving for 9 months. Before the second crash, I was pitching at practice and dislocated my shoulder, this led to a whole host of other issues. After I crashed my car I went to an ENT doctor. They ruled out vertigo and had me go to balance therapy. My balance therapist Kayla saved my life. She recommended me to Dr. Hohler, a neurologist at St. Elizabeths in Boston. She recommended me to her because of the changes in my heart rate and blood pressure upon standing. I also explained to her what was happening when I moved my head. After the referal my PCP had to see a cardiologist, and rheumatologist. This was the start to a long road of tests, appointments, medications, a full lifestyle change. 

In February of 2021 I finally saw my Neurologist where she ordered multiple tests and suggested a few self management tips that would hopefully hold me over until the test results. At this point I was unable to work, drive, walk down stairs due to the severity of tremors I was experiencing, stand for more than 5 minutes, use any fine motor skills, turn my head to look at something, exercise, fainting, and much, much more. During this month I also saw my cardiologist who had me get an echocardiogram because he was concerned with my heart. Now if you are familiar with how this all works, you wait months for your original appointment, then another few weeks-a month for the testing. The first test I had was actually before my first neurologist appointment and that was a brain MRI so that my doctor could review it before our appointment. Thankfully everything looked normal. In March 2021 I had my echocardiogram to check for vascular Ehlers Danlos syndrome which has a life expectancy of 40 years. I got the results on my birthday that everything looked okay. My neuro ordered a tilt table test which tests for POTS, I had that in April 2021. That test is pure hell. That came back and I was told I have POTS(postural orthostatic tachycardia syndrome). POTS is an autonomic nervous system disorder. I will go more in detail of each illness in a seperate post.

After this diagnosis Dr.Hohler referred me to a geneticist because there was still more going on, besides POTS. Until that appointment in July I started medication, drank 100oz of water ½ being electrolytes a day, and made some other lifestyle changes. There was a point in May that I woke up paralyzed and it took a few hours to regain feeling in my body. I still have not gained full strength back from that day. After that happened, Dr.Hohler added another medication for me to take.

When July hit I had my geneticist appointment with Dr. Mulinsky. At this appointment I was told I have Mast Cell Activation Syndrome(my body produces too many mast cells causing me to have allergic reactions to many variables, Gastroparesis(“paralyzed stomach” this explains my long term GI issues), and a connective tissue disorder(either loey-dietz or ehlers danlos). The test he conducted took 4 months to come back. So I waited anxiously for my results because he told me that Vascular EDS was still a possibility. In December 2021 I received the call that I have Hypermobile Ehlers Danlos Syndrome which was a relief, although it is still a rare disease that comes with many struggles. 

After a long time of not knowing what was wrong with me, I finally had answers. I longed for answers for years, I hoped at every doctor’s appointment I went to that I would get SOME kind of answer. And appointment after appointment, year after year I had no hope. I felt gaslighted by my doctors, and some people in my life, they convinced me I must be making it up… but I wasn’t and I am not. I now have 4 rare chronic illnesses that affect me everyday in different ways and I never know how I am going to feel when I wake up. So although I am incredibly thankful for my current team of doctors and that I finally got answers, it is still a big struggle and my battle is not over yet.

 If you are dealing with a similar situation, please keep pushing and seeing new doctors, you will get answers. If you are a caretaker/friend/loved one, of someone who has a chronic illness, please do research and help them as much as possible. We need it