A Day in The Torture Chamber with God, but Hey – it wasn’t so bad.
I knew Tuesday, February 9, 2016, was going to be a day of struggle. I’ve been suffering with a rare type of neuropathy that has progressed over the past year. It sometimes causes unbearable pain in my feet, depending on the ‘flare’. That’s what our posse nicknamed an ‘incident’ — we call it a ‘flare’. I have a community of almost 900 online friends from all around the world who have this same condition and we chat throughout the week about our ‘adventures’, both good and bad. I’ve made some online friends that I hope to meet in person eventually. I’ve struggled to understand why this is happening to me, as have the many baffled physicians I’ve visited. The puzzle pieces are not coming together right now.
I first visited Johns Hopkins about six months ago and my physician ran a barrage of blood work. I expected to be a guinea pig but I didn’t expect to be told, “You’ve possibly got blood cancer.” My instant reaction was, “Wait. What?” He said, “Melissa, you tested positive for a Monoclonal Gammopathy and it’s a sign of Myeloma.” Say whatttt? What the heck is a Mono… A Monoclonal ‘what’? I felt like I was in grade school asking my teacher to repeat the two words until I could pronounce it. He said I needed to see a Hematology Oncologist. The word ‘Oncologist’ alone scared me. I had to wait three long months to get in. I thought, “Well, if this were really a health crisis, I’d be seen sooner than three months, right? So, how bad can it really be?” On the day of the appointment my husband drove me to the hospital. I was nervous but feeling alert and somewhat emotional. I kept hugging on to John’s arm as if he was going to save me from drowning. I watched so many patients come and go that day. Women walking with their heads held down, wearing wigs, scarves, and so frail in appearance. You could tell their confidence was diminished. I began to think, “No matter what happens here today, God has a plan for me.” I felt a sudden sense of peace come over me.
Finally, my name was called and we got up and walked back to the room. The hematologist came in and let me tell you what — she was a little firecracker. I had googled her and found some YouTube videos so I already knew what she looked like. She was an attractive petite, sophisticated, blonde-haired beauty with the perfect amount of make-up on and rocking high heels like nobody’s business. I can’t imagine how much walking she does throughout the day. Her calves must look amazing. Anyway, she reviewed all my pre-labs and history of labs and procedures and with confidence said, “I am happy to say you do not have blood cancer.” I felt my eyes tear up and I glanced over at John. It was as if we had just won the lottery. I said, “Really? I don’t?” She said, “Nope. You don’t have cancer.” I got up and hugged my husband and never wanted to let him go. Oddly, it was a beautiful moment we shared as husband and wife that can never be taken away from us. When you see your life flash before your eyes, and then it’s ‘given’ back to you with just one sentence, so to speak, it’s truly an amazing feeling. I thanked God for his blessing and for giving me my rock, John.
While I was relieved I didn’t have blood cancer, it didn’t solve the mysterious, painful neuropathy I’d been suffering. The pain was and still is very much alive and present. I waited on visiting my doctor for a few months after that hematology visit. I felt drained and needed a mental break.
Before the holidays started, my John’s Hopkins doctor and I began emailing each other again and he came up with a new game plan. He wanted me to have an EMG, three biopsies to check for Small Fiber Neuropathy, and more blood work for genetic testing. I had an EMG in 2008. It was horribly painful and I knew I did not want to repeat it again. EVER. I felt like a caged monkey in a science lab. An electromyogram (EMG) measures the electrical activity of muscles at rest and during contraction. Nerve conduction studies measure how well and how fast the nerves can send electrical signals. Nerves control the muscles in the body with electrical signals called impulses. These impulses make the muscles react in specific ways. Nerve and muscle problems cause the muscles to react in abnormal ways.
Fast forward to 9 February. It was as if I was told, “On this very day, you’re going to be tortured. Enjoy your day, girl!” I thought about it nonstop and when I laid down that Monday night I tried snuggling up to John for some comfort before going to sleep. What a joke. “Sleep.” Hah! Who wants to meet up with the “Electro-cutioner” and have their nerves zapped to death tomorrow?! Yes, I love feeling bolts of lightning racing through my veins and seeing my foot fly up from the table. “I can hardly wait for my EMG,” said No One Ever. Haha.
We arrived at the hospital. I waited for the doctor for an hour before I finally observed a handicapped man in his mid-50s politely entering my room. He walked with a noticeable imbalance and his head was slightly turned to the right. I could see that his left shoe had a built-in sole much higher than his right shoe to accommodate his ease of walking. My immediate thought was, “This must be a patient wandering into the wrong room for his appointment.” The man was actually my neurologist. I internally absorbed it for a second and realized all the obstacles this man must have faced to be where he is today — a highly regarded neurologist at Johns Hopkins Medical Center. He spoke in a very soft tone which put my mind at ease. We spoke for a good while. Next, the torture was about to begin, I was thinking.
Not so fast. I had God with me all throughout the day. I just didn’t realize it. Even if I don’t find answers after that long day, I know God was with me on the 9th of February. How do I know this? I’ll tell you. He gave me a kind, caring neurologist to work with. The doctor was genuinely interested in helping me and made special phone calls to get things rolling that same day. Then, I walked upstairs to get blood work done and there was no wait. The technician was an incredibly kind black woman wearing a glamorous headband and bright purple eye shadow. She was filled with enthusiasm and we talked about God until she finished ‘collecting’. Subsequently, the nurse practitioner who did my three biopsies was outgoing and spoke to me throughout the procedure. After the procedure, there was a slight delay allowing me some time to eat a small meal that my husband had retrieved from a bagel shop next door. That was a blessing because I morph into a monstrous Satan creature if I don’t get my meal before a low blood sugar attack hits. My man knows this. On to the EMG… I had three funny doctors performing my EMG who appreciated my goofy sense of humor. It made the pain of the test more tolerable. With every big zap, I’d crack a joke. “Oh my God!! That was like roasting a hot dog inside my arm, dude! OUCH!” They’d all crack up laughing. Another huge frequency zap to the leg and John said, “You guys should flicker the lights the next time you zap someone, having them think their zap is responsible for it.” We all died laughing. By the 15th or so zap, I was sweating and I could hear myself thinking, “Girl, you didn’t wear enough deodorant for this nightmare.” It’s every woman’s worst fear… the beginning stage of B.O. and you’re not prepared for it. But, I’m supposed to be crying in chronic pain and not worried about B.O. I mean, seriously? I’m such a hygiene freak. I can’t help it. Yes, the test was painful but God blessed me again with a good group of people for the day. Furthermore, this EMG wasn’t as painful as my last one in 2008. Perhaps the technician was better. I don’t know.
I felt sick to my stomach but in the end, I survived the day. We had been at the hospital from 10 AM to 4:45 PM. I closed that joint down. Literally. Lights off and empty waiting room by the time I left. John picked me up out front and I rested on the way home. We stopped for pizza at one of my favorite local restaurants. The 9th was my mother’s birthday and I tried to speak to her as little as possible because I knew my mood was ‘off’ and she didn’t need that mess on her special day. She needed to be surrounded with positive energy.
I closed out my evening by finishing the War & Peace series on TV. Two hours of ‘just me’ time watching a show I have thoroughly enjoyed. It relaxed me and then I had a peaceful night of sleep. The fun isn’t over for John though. I can’t look at these biopsy sites so I’m making him change the bandages while I squint my eyes shut. I still haven’t seen what they look like. Good. Heck, he still loves me after my hysterectomy and I was absolutely hideous for weeks.
Truthfully, the one thing that stands out in my mind is the smallest thing… It was when I thanked John for driving to JH and apologized that it was an all-day event. His perfect response was, “No worries! I don’t mind and we’ll keep coming here again and again until we get this all figured out.”
Please watch this Erythromelalgia (EM) Awareness Video: