The Invisible Illness

Testing, 1 2 3.
*tap tap* Hello? Is this thing on?

I took a two-month sabbatical from this blog. “Sabbatical” sounds a lot more professional and planned than “I fucking dropped off the face of the earth, you guys.”

Life happened and even though I have a great friend who continually reminded me to write (shout-out to Maegan!), I couldn’t come up with inspiration, energy, or drive. So I’m going to talk frankly about the reasons why.

First things first: I wrote previously that I had been experiencing some ongoing health concerns. To be completely honest, they zapped me of my energy. I woke up one day in January with persistent hip pain (or, what I identified at the time as hip pain) and it never really went away. I fluctuated from bad days to worse days, and I’d have brief episodes where the pain seemed to disappear completely–but only for a few hours, or a day–or once, a weekend. I tried desperately to come up with answers. Was it my bed? Was it the position I was sleeping in? Was it my shoes? My gait? My diet?

I visited the doctor several times, had some blood tests, and was off on my merry way. They noticed inflammation markers in my blood. I ignored an order for physical therapy in March because I thought I could get better on my own and simultaneously, I thought something was so seriously wrong that I wanted an Xray or an MRI to check it out before I resumed activity.

Spoiler alert: I didn’t get better on my own, and my Xray looked completely normal.

Finally my GP sent me to a rheumatologist and wrote a new order for PT. The physical therapist didn’t know what to do with me because nothing helped. The rheumatologist, very matter-of-factly, stated that I had a disorder in the seronegative spondyloarthropathy family, most likely, ankylosing spondylitis.

Ankylosing spondylitis (pronounced ank-kih-low-sing spon-dill-eye-tiss), or AS, is a form of arthritis that primarily affects the spine, although other joints can become involved. It causes inflammation of the spinal joints (vertebrae) that can lead to severe, chronic pain and discomfort. In the most advanced cases (but not in all cases), this inflammation can lead to new bone formation on the spine, causing the spine to fuse in a fixed, immobile position, sometimes creating a forward-stooped posture. This forward curvature of the spine is called kyphosis.

…AS can also cause inflammation, pain and stiffness in other areas of the body such as the shoulders, hips, ribs, heels and small joints of the hands and feet. Sometimes the eyes can become involved (known as Iritis or Uveitis), and rarely, the lungs and heart can be affected.

…The hallmark feature of ankylosing spondylitis is the involvement of the sacroiliac (SI) joints during the progression of the disease, which are the joints at the base of the spine, where the spine joins the pelvis.

As it turned out, what I had been describing as “hip pain” was actually inflamed SI joints, which was why the pain spread from the right side of my hips to the left (there are two SI joints, connecting the pelvis to the spine on either side) and why my lower back was affected. It also explains a number of my other symptoms over the years: knee pain, shoulder pain, fatigue–just to name a few.

For a long time, I didn’t want to believe this diagnosis. I thought there had been a mistake. I thought, “maybe this pain will go away and never come back!” My hope was masking my denial. Still, the pain persisted, and my spirit flattened. I didn’t want to believe that the rest of my life could be potentially made up of episodes and remissions of a disease that can be boiled down to simply my own body mistakenly attacking itself.

Around this same time, I also started SSRI treatment to manage my anxiety and depression. I had some ups and downs with that, first feeling completely uninterested and unenthusiastic about life in general, and then mellowing out and plateauing. A lot of my anxiety and depression during this time was about my diagnosis, and how I could continue to be the person I wanted to be and work towards the goals I set out to accomplish with such a huge roadblock standing in my way.

I have spent several weekend days in bed trying everything. Anti-inflammatories (what’s up, Diclofenac!?), ice, heat, stretches, exercises, rest. Some days I didn’t know if my low energy was AS, or if it was depression. It’s likely that it was a lot of things, including AS and depression, but also: a general lack of fulfillment with my career, boredom, relationship struggles, sleep disturbances….

I’ve had a little bit of an upswing recently, which has afforded me an opportunity to breathe, contemplate, and plan. My pain has become more manageable; I have started low-impact exercise because remaining active is the number one most important thing to do with a condition like AS; I have continued SSRI treatment and therapy; I have overhauled my diet (gluten and soy are some of the biggest causes of inflammation, so I have considered adopting an elimination diet as well to see if that helps me feel even better); and, I have added in activities and routines that are solely meant to satisfy me. Nobody else. I started playing the piano again. I started reading voraciously. Most importantly, I try to make time to be by myself, so I can begin to repair the troubled relationship I have with myself. Self-love is not just a buzzword, you guys. It’s a real thing that every person should be working towards, especially if you’re anything like me–chronically insecure and self-loathing.

My veganism remains at the heart of it all. It is such an important value to me and we are looking to attend Chicago’s VeganMania in October. My husband and I are also currently planning a trip to Iceland for our one-year anniversary and I can’t wait to write all about it–the nature, the sights, the food, the people!

And at Maegan’s behest, I might just have to write an Ode to Broccoli, because broccoli is the best.

I’m glad to be back. ๐Ÿ™‚