Welcome to my blog about living and loving with chronic illness. Truth be told, I've thought of myself as many things, but a blogger was never in the cards. I think three elements have brought me here:
1) A huge passion for the written word (reading it, listening to it, creating it)
2) A lifelong story, resources and a little wisdom I've collected that I think may be worthwhile to share
3) A strong desire to connect with others who might be drawn here.
By sharing my story and experiences, my hope is to highlight the ways I've found that good can come into our lives (often because of and not despite of illness). Certainly this looks different for all of us and it might take a while to see or understand how it's even possible. Even when we figure it out, it's also easy to lose sight of (especially on "bad days"). It's a struggle - for all of us - but I really believe the good is there waiting and we have to open our hearts to it. Whether good comes in the form of a real friend who we find content to just sit with us through a doctor's appointment, a career path that might be revealed, or any number of surprising ways... it's up to us to search. It's easy to sometimes feel our illness is the bane of our existence, but what if it's only what we make it? What if, when looked at in the right way, our greatest struggles could also be our great strengths? I hope somewhere in my posts, I show this to be possible.
The disease I live with is called Undifferentiated Spondyloarthropathy (really rolls off the tongue, I know!). Say it correctly five times fast and you'll be my hero. Spondyloarthropathy (also known as "Spondylitis") is a fairly rare form of arthritis that causes inflammation, stiffness and pain in every joint and connective tissue in the body. Because of the chronic pain, I'm also chronically exhausted. If you care to read more about Spondyloarthropathy and other relates diseases, give the Spondylitis website a glance:
Now that I've defined it, let's back up a bit to the beginning. I was a happy, curly-haired munchkin for most of my childhood and, in all the ways that counted, I really had it made. In fact, I still do. I had a mom, dad, brother and extended family that would go to the ends of the earth for me. I lived with a beautiful roof over my head, a big backyard and a safe neighborhood to grow in, pets to love, a private school education, summer camps, food 3 times a day. Undoubtedly my health was my biggest obstacle. Whether I wanted to admit to or not, 16 years of pain, medical appointments, exploratory tests and stumped doctors took a toll on me. You can only hear doctors imply that you're making things up so many times before you start believing it yourself. For years I convinced myself that the pain was normal...that everyone woke up unable to walk.
Of course in my heart I knew I was different and, since the average grade-schooler spends most of their day trying NOT to stick out, it wasn't easy. According to my parents, I rarely complained or missed school, but each day was just harder for me than the average kid. It was the simple stuff, really... sitting in car rides, bus rides or classes for more than 20 minutes made my back throb and burn with pain. I wouldn't be able to keep up with my classmates while walking in lines (hasn't really changed today), and then kids being kids, asking why I was "so slow". Although gym class as an institution is, in my opinion, inherently brutal for most kids (could go on for pages about my gripes with it), it was especially rough with an undiagnosed illness. I just couldn't do most of what was required: the stretches, the pull-ups, the timed miles. Year after year, I had gym teachers calling me lazy or making examples of me. Once, I had to run a mile alone in front of my class on painful ankles because my teacher decided I was "faking it". Given no other options, I still tried to suck it up; convince myself it wasn't that bad.
A chain of events led to my eventual diagnosis, beginning with Mr. Mack (my third grade math teacher and full-time dreamboat... but I digress...). Let's make no bones about this: I'm pretty awful at math, but in third grade I was especially awful. It wasn't for lack of trying; my mind was just...fuzzy. Being in pain and just becoming forgetful - it wasn't me- and luckily, Mr. Mack cared enough to pick up on it. He spoke with my parents about his concerns who then took me to more doctors. Because of the intense joint pain and because I had recently spent some time on Fire Island (a heavily wooded island off the coast of Long Island), all signs pointed to Lyme Disease. I never saw a tick on my body and didn't present with the common rosy patch one typically gets with Lyme, but doctors decided to treat me for it and see if that helped. I was hospitalized for a few days and, after being discharged, wore an IV port to school so I could receive antibiotic infusions for about a month. The pain and symptoms seemed to dissipate and so doctors thought they'd finally figured it out.
Unfortunately, it didn't last. In late middle school and early high school, the pain resurfaced and it was only then that I was referred to Dr. Thomas Lehman. I was told Dr. Lehman was the top in the field of Pediatric Rheumatology, but Rheumatology? Arthritis? It seemed impossible. I was 16 and could only think: "isn't arthritis a disease for the old?" Dr. Lehman did some blood work and sure enough - I tested positive for having the HLA-B27 gene (a strong predictor of Spondyloarthropathy and other autoimmune disorders). This is why I always say that getting diagnosed was mainly just a huge relief. Finally someone not only believed me, but they knew how to help !
I'll get into some more details later, but 8 years later this is why I'm here. I've had many medical experiences, but more importantly I've had many personal one. It hasn't always been a smooth road, but everything (the friendships, the relationships, the good, the bad and the downright ugly) has helped shape me. It's all made me see that in some very unexpected ways, Spondylitis has made me Maya. That's not to say it defines me, but it's okay to admit it's played a pretty major role in my life. In my eyes, it's made me stronger. I feel lucky to share my story and resources with you as it unfolds and to hopefully keep you company on your own journey. Thanks so much for reading...