Saturday, April 4, 2015

Easter In Me

As I sit overlooking the courtyard on this glorious spring day, I feel so fortunate to sit at this desk made of recycled wood and to listen to my son's and Nana's spirits singing to me through the music of our wind chimes. I am not a traditionally religious person, but rather a deeply spiritual one with influences from various religions. However, there is something sacred about Easter that calls to me, especially this year.

I was texting earlier with my dearest friend, who also has chronic pain, and I told him that I was just so tired of it all. Exhausted from the pain that possesses my body every day and all that goes with it. After 16 years, it seems rather normal that I would have these feelings. I'm a chronic pain veteran, but the war isn't over.

Every night I say my prayers. I thank God for all the pain has taught me and for the person I've become on account of it. Every morning, I wake, thanking God for getting me through another night. But in my heart, I can't help but wonder if I'll ever know a day without pain.

A few weeks ago, I met a new doctor in O.S.U.'s new pancreatic clinic.  I did not care for him... AT ALL.  I have plants with better bedside manners. He wore his prestigious title like a crown upon his head, and I was left choking on his arrogance. As I tried to summarize the last 16 years of pancreatic issues (which have created other GI issues and conditions), he kept interrupting me. I'd be recalling an intense flare of the pancreatitis, and he would ask, "Why do you THINK you had pancreatitis that time?"

Other than the medical tests, procedures, documentation that he held in my file, I was left with little to say. On the inside, my subconscious was staring annoyed at him, thinking, "Why do you think you're being a prick today? You may wear the crown in this clinic, but I wear the crown of this body with all it's imperfections, and I am not about to take your asshole antics."

Thank heaven's my subconscious has a condo in my brain and can't travel down to my voice box!

At any rate, we got through the appointment, and he said he was going to order all kinds of blood work, an MRI, and a test he called the "Gold Standard" at detecting pancreatitis. So now I refer to him as Dr. Gold Standard. It's a delightful oxymoron that befits him and entertains me.  He told me I would have all these things done in the month to come, and then we would reconvene in May to go over the findings.

I left frustrated, irritated, and generally lost. I had hoped for more from this man who is being raved about by his peers in the medical community. He was cold. I had to thaw as I left his office. I felt like he didn't believe I even had the condition, which baffled me. I've seen a renowned doctor at Indiana University's pancreatic clinic for 14 of the 16 years with this issue, and he never doubted it. He was the first doctor who diagnosed the problem to begin with.

Dr. Gold Standard's dubious attitude made me wonder if it could be true. That the pancreatitis wasn't the core problem. As I struggled with the idea, I was left wondering, "What the hell has been going on all these years after all?"

Since then, I've been getting emails, alerting me to test results that had been posted on O.S.U.'s awesome MyChart system, whereby patients can see certain test results, past hospitalizations, and even email doctors. My blood work was coming back, and there was one test that no doctor has EVER ordered, which is an indicator for an autoimmune disorder. I tested positive, so there is obviously more digging to do for answers.

Ironically enough, this past week my swallowing problem and the resulting pain has resurfaced, even though I just had my esophagus dilated by a balloon in early March. This problem has been plaguing me for years. In 2013, I had surgery to repair it, but my bowel was accidentally nicked. I became septic, and during emergency surgery, I lost 8 inches of my intestines and ended up with a  colostomy. I almost died.

Anyway,  I can't keep going as I am, but it would be my last case scenario to subject myself to that surgery again . So with these results coming in and this issue resurfacing AGAIN, I decided to do some digging. I researched autoimmune disorders, and there was one that described my swallowing issue to a T. While it scares me, I feel so blessed that there is this new possibility for a treatment or procedure that could make a positive difference in my health.

So to come full circle, I see this new doctor in a new light. Life's gifts don't always come in the packages we desire, but they are gifts nonetheless. Dr. Gold Standard's knowledge and range of expertise may lead me to a new, or at least brighter, start. And to me, that's what Easter is about. It's about rebirth and salvation. This man, with all his arrogance, may be on the way to saving me from the grasp of some of these symptoms.

One of the greatest challenges of chronic pain and illness is the isolation. It's the spirit within that wants so bad to do things that my body just won't allow right now. As I sit here with the sun shining upon my face and listening to the wind chimes, I am reminded that I am never isolated. God's unconditional love surrounds me at all times.

I can't help but wonder where life will lead me in the coming months, but I know the Divine won't leave me stranded. My faith tells me that these bumps in the road are meant to make me stronger. I may not ever have a pain-free day, but I may have a less painful day... someday. And for me, that would be bliss!

Happy Easter and Shalom!