I was having severe digestive issues.
My pain management doctor at the time did not believe that RSD/CRPS could go full-body. And thus, with these symptoms (like digestive issues, breathing problems, chest pains, and skin lesions) he had me on a wild-goose hunt to chase down the source of all of these ailments. I had been through testing after testing, MRI and CAT scans, and more hospital stays than I would like to count.
This was nearly a year and a half after I was initially diagnosed (by three other physicians) with RSD/CRPS.
The latest goose, you ask, was a possible diagnosis of another rare disease. I was sent to a leading university affiliated research hospital where a doctor there was one of the best for that particular disease. The was a ray of sunshine coming out of the clouds when I received the mini-book of paperwork in the mail. I was to fill it all out, bring various test results with me, and come to see the doctor.
Far, far away.
It was a fifteen hour car drive that my parents lovingly took with their ill daughter lying in the back seat. My wheelchair was placed in the trunk behind me and no expense spared when pertaining to my comfort. Blankets and pillows outnumbered the people in that Ford Explorer.
It was the longest car drive of my life.
Here I was, a full body RSD/CRPS patient, with swelling throughout my body (nearly 6 pants sizes worth), propped up because of breathing difficulties, and stopping every so often to wash out the, uh, digestive-issues-bucket that I had to keep next to me.
We drove early in the morning, through the day, and into the late afternoon. When we finally pulled into the hospital’s parking lot valet service, it seemed as if the building was glowing. Surely, surely this was the place that we were going to get the answers that we were so desperately seeking.
The hospital was fancy to say the least and I have had many hospitals visits to compare it to. State of the art technology was abounding. The nurses were exceedingly friendly and smiling faces greeted me everywhere I went. This certainly was a good place to go if you were sick. I was given a small examination room, where my parents came and joined me.
The doctor came into my room, right as I was finishing up with, well, how do I put it, one of my digestive episodes. He smiled. He had seen this before. It was nice to be in a place where my wheelchair was not a spectacle and digestive issues were not looked down upon. After looking at my chart, blood work, and other medical parapeneilla, he looked me in the eyes.
“You don’t have Porphyria. But don’t stop looking for answers.”
With that he walked out and closed the door.
I was stunned, to say the least. I sat there looking from the door, to my mother, to the door again. With two simple sentences the man was in and out of the room. I so desperately wanted to chase him down the hall and ask a million other questions. “If not that, then what? What do you suggest for me to do now? Where am I to go? Do you know how long that car ride was? Do you know how long it will be on the way home? Do you realize that insurance covers nearly nothing for all of this?”
The questions ran through my mind so quickly. I was trying, so desperately hard to gain control over myself; to no lose it. I tried to let deep breathing sooth my anxious mind and to prevent the tears welling up in my eyes. It was not this doctor’s fault. He knew the disease he studied and gave me a simple yes or no answer.
It was not his fault.
Deflated I wheeled myself back into the nurses station, refusing the help of someone to push my wheelchair. I wanted to commiserate on my own. This time, the hospital did not look so wonderful, the nurses not so nice, and the place was certainly not glowing. Try as I may, I was losing my grip on hope.
That night, we checked into a nearby hotel. I did not want dinner, even if I could keep it down. I sat on the bed, one hand on my Bible and the other hand wiping the tears streaming from my face. My precious mother sat there with me, trying her hardest to comfort her child’s hurting heart.
The Bible in front of me was turned open to the book of Psalms, my usual help in trouble. I tried uplifting ones, but my mind kept going back to Proverbs 13:12:
“Hope deferred makes the heart sick, but a wish fulfilled is a tree of life.”
How so very true this was. How so very true this was right at that moment. There are times when certain verses resonates with us, like a mallet to a gong. The echoes of the ring of this verse were within the caves of my soul. The sound of it seemed to bounce off the innermost recesses and proceed outward again; giving me words for how I was feeling.
In a strange way, it comforted me. To know that I was not alone in the feeling of this emotion. And sometimes, that is all that the heart really needs to know.
I came to a resolution that night with myself. I had enough. Enough driving around. Enough blindly trusting my doctors. I had to become invested in my own health as well. I needed to learn more about the wretched disease plaguing my body and different ways of combating it.
I had to become my own patient advocate.
It was difficult, to say the least. I began reading everything I possible could on RSD/CRPS, including research papers. However, important this was, the real change occurred when I started to view doctors not as all-knowing sources of medical wisdom. But, rather, as a team of people, including myself, who was interested in health and managing my disease. It did not cure this disease, but it has given me a stronger handle on my flare ups as well as a backbone to stand up for myself when mistreatment occurs by doctors.
It has given me a voice.
Please See Part 2 for HOW I became my own Patient Advocate (COMING SOON!)
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