When it's worse than you realized...

EDS got the best of me this week.

You know those things we tell ourselves to feel better about our own lives? "I'm not out of shape, those were just more stairs than necessary!" "This delicious Starbucks drink isn't so bad for me, it's coffee!" "At least my EDS isn't as bad as some of those other cases I hear about."

This week, the illusions came crashing down. Yes, I am able to work a full time, very physical job (barely, but I'm doing it). Yes, I am able to socialize on weekends. Yes, I am able to hike up a small mountain on occasion. But turns out, when you pull back the curtains of my looking "normal" on the outside, my body is far from normal.

I went to see a spine specialist on Thursday because my PT and I were both concerned that a localized, painful spot on one of my thoracic vertebrae could be a fracture. So off I go, into the x-ray room, and I come back to go over the images with my new orthopedist. He told me there was no visible fracture on the x-ray, so it is either a hairline fracture on the spinous process that did not show up, or a sprain of one of the tiny ligaments in the spine. No need to take off work or put me in an intense back brace. Great. 

Then, the spine specialist mentioned, "I'm sure you already know about the scoliosis." To which I said, "Oh yeah, they told me in high school it was just 5 degrees and not to worry about it." At this point, he pulled up the image to show me, and said, "You have a 30 degree thoracolumbar scoliosis." He then went on to explain how, unlike adolescent idiopathic scoliosis, which stops progressing when you stop growing, with EDS and other connective tissue disorders, scoliosis can develop simply because of the lack of structural integrity holding the spine upright. Literally, my spine is slowly collapsing on itself, because the ligaments can't do the job they were created to do. There is nothing to do for it surgically until it reaches 45 degrees, so at this point I will need to work with my PT on some additional exercises specific to my scoliosis, and continue to monitor it every few years.

EDS -1, Me - 0 

Come Friday, I had a follow-up appointment with my neurologist that I had long been anticipating. I have strongly suspected that I have POTS (postural orthostatic tachycardia syndrome), a type of dysfunction of the autonomic nervous system that is often seen along with EDS, and I finally have raw Fitbit data to show the doctors that my heart response to life is not normal, despite my heart being structurally healthy. During this appointment, I anticipated going over my EEG (brain wave test) and brain MRI, then continuing to pursue POTS as an explanation for my autonomic symptoms. So I said hello to my neurologist, we compared our Fitbits and talked about how much we love them, and we moved on to discuss my brain imaging. "Your EEG is normal," he said, "so no seizure activity." "Great!" We move on to the MRI. 

This is the part where I realized I needed to throw all my expectations out the window. On my MRI was an anomaly called Empty Sella. This is an enlargement of the space surrounding the pituitary gland, which is responsible for regulating hormone production. My neurologist explained that, while it could just be a structural anomaly that I was born with, it could also be a buildup of cerebrospinal fluid (CSF) compressing the pituitary gland and causing hormonal abnormalities, that could in turn be causing my dizziness, lightheadedness, poor temperature regulation, poor blood pressure and heart rate regulation, and other strange symptoms I experience on a regular basis. He referred me to an endocrinologist (which fortunately, my PCP is), to test my hormonal levels to determine if that is the cause of my symptoms, so I will be following up with that over the coming weeks. It seems pretty likely, since CSF leaks do have an association with connective tissue disorders such as EDS, and also can develop as a result of head trauma. (I have had 2 concussions.)

EDS - 2, Me - 0 

I am trying to just be thankful that I am finally getting answers. But this week shattered me a bit. I just didn't think I had it "that bad," but suddenly I have all these doctors pointing out more things that EDS has caused that I was not anticipating. I usually take the medical blows as they come, because unfortunately, I'm pretty used to it. But this one just got me. The fact that my body can't even support my own spine was devastating news, and to find out the next day that I may have a CSF leak was, honestly, heartbreaking. I'm just trying to live a normal life, work a job I am passionate about, exercise and stay in shape, spend time with friends and family, enjoy nature. But instead, I find myself in doctor's office after doctor's office, getting test after test, with a growing list of things I need to "monitor." Thank god none of these will require urgent surgery, and may never require surgery, but it is now a possibility I need to consider for my future. 

And frankly, for possibly the first time in regards to my health, I am scared. I'm terrified for my future. I am anxious about "what's next?" I am sad for myself. I am frustrated that I am stuck dealing with all of this. I am overwhelmed. I am exhausted. I am so so fortunate to have an amazing support system and my incredible husband by my side through all of this. I try to stay positive, and to not let my health knock me down. But right now, I'm finding it hard to find the silver linings. I am just feeling like EDS won this round.