I had my second appointment with the Autonomic Specialist this past week and he is sending me off to a Vascular Surgeon, because he confirmed vascular compression issues on my CT Angiogram. I am going for a consultation on August 6th with vascular surgery here at Duke in North Carolina to find out next steps from here. He said vascular compression issues are more commonly seen in those who have Ehlers-Danlos Syndrome; however, I do not have Ehlers-Danlos – Vascular type, which I thank the good Lord for, since vEDS can cause arterial ruptures, aortic dissections and a host of many other life-threatening possibilities. I have Ehlers-Danlos – Type III (hEDS). However, he did tell me that my vascular compression issues need to be addressed by a vascular surgeon as soon as possible, because if surgery is required, it will need to be done sooner rather than later.
In addition, he does believe there is an autoimmune process going on in my body. I was referred to a Rheumatologist and have an appointment set up in two weeks. The Autonomic Specialist mainly wants me to be evaluated for Sjogren’s Syndrome, which is a systemic autoimmune disease that affects the entire body. Most of the time, Sjogren’s is chocked up to severely dry eyes and dry mouth, but other serious complications of the disease include fatigue, chronic pain, major organ involvement, neuropathies, and lymphomas. You can read more about the connection between Sjogren’s Syndrome and Dysautonomia by visiting here and scrolling down to the “Sjogren’s Syndrome” section: https://dysautonomiainternational.org/page.php?ID=150. More recent research regarding Sjogren’s Syndrome has shown that the disease can initially present as POTS.
I recently received an explanation for my twitching muscles as well – it’s called “Benign Fasciculation Syndrome.” If you ever experience recurring muscle twitching, I would suggest being evaluated by a Neurologist, but do not make the same mistake I did and look this symptom up online. These muscle twitches have been one of the very many sources of my anxiety over the last 6-8 months all thanks to Google.
That all being said, this is all very overwhelming, and I am not entirely sure where my head is at right now. I ended up in the ER (again) this past weekend, as I was struggling with breathing issues and chest tightness – something that has landed me in the hospital a few times before. However, this was a bit different than usual and they thought it could have been a Pulmonary Embolism due to the amount of time I had spent in the car last week, but thankfully, they did not find one. There is still no solid explanation as to why I have breathing troubles and tightness in my chest and perhaps I will never know.
Though it’s hard for me to grasp all of this and I find myself wondering, “How did I get here?” quite frequently – I do thank God, the Universe, my lucky stars for still being alive today. That may sound dramatic to most, but for a while there, I wasn’t sure I’d even make it to 29. As time has gone on, I realize that it’s important to show gratitude for what I do have. I am still waking up in the morning, I have a roof over my head, I can shower, get dressed, eat nutritional meals and drink clean water. I have access to medical care and the ability to find the right doctors. I have an extremely supportive husband and very caring family and friends. Though every day brings its own set of challenges with chronic illness, I am still here. There must be a reason for that, right?
Someone recently told me that we all have an expiration date and the trick is that we don’t get the luxury of knowing when it will be or how we’ll leave this life. With so many unknowns, all we can do is live in the here and now – as cliché as that sounds. But it is true. I didn’t anticipate that at 29 years young, I would spend more time at doctors’ offices than at home or going out and having fun. At 29 years young, I didn’t expect to be taking more supplements and medications than my 86-year-old Grandmother. At 29 years young, I imagined my husband and I traveling and going to places we’d never been before. At 29 years young, I planned to become a Mother for the very first time within the near future. Though these are all the things I still hope I can do and am able to do in the future, I have had to learn not to put so much pressure on myself at this point in my life. As the old saying goes, life doesn’t always go according to plan. I am learning the truth to that statement more and more, and though it’s a hard pill to swallow (pun intended), I am getting there.