For the past month, I’ve had some weird tingling and burning sensation on my right side. Seeing how I have a few health problems like Crohn’s (an autoimmune disease) and circulatory problems, I thought that it was time to get it checked out so I made an appointment with my doctor.
Skip ahead to this past Monday. I went in expecting to get a chance to tell him all the nuances I’ve noticed in my body that I feel are connected to these weird flare-ups. I am not in the medical profession (I couldn’t handle seeing someone’s insides or have to deal with all the years of medical school and loans), but I consider myself to be somewhat intuitive with my body. After practicing yoga for 10 years, I feel like I am at a point in my practice when I am open to listening to my body and pushing it to bend and twist in certain ways while also acknowledging its limitations. I try to eat healthy (with Crohn’s that’s a must in my book) and I try to stay active (so I don’t suffer clots from my Leiden Factor 5 genetic issue or my heart murmur). So, when I described that the tingling and burning were on my cheek, my arm and my thigh and that I noticed they’re most prevalent when I’m under stress or sleeping on my right side, he immediately said, “This seems to be stress-related.” I told him that around those areas I also have a sensation of pinched nerves and that when I press on trigger points those sensations go away. He immediately disregarded what I said and told me that there is no one nerve that connects all the way up and down the side of the body. I asked him if it could be cardiovascular and he told me that I’m too young to be in the range of having a stroke. I asked if it could be circulatory because I notice that in those spots my skin is cold, and he told me it is neurological or maybe, just maybe, he said it’s “psycho-somatic.” Code for I’m imagining things.
He then threw out the deadly phrase “systemic MS” but “poo-pooed” it because he told me that he would like to see a lot more symptoms pop up before even suggesting I go see a neurologist. To cover his butt, however, he had me do a series of balance and motor skill tests. Then, he told me that I passed with flying colors. “Ok,” I said, “Now what?”
“What do you mean, ‘Now what’? Stress can do a lot to our bodies. You said you were under a lot of stress, right?”
“Well, yeah. I have been worrying about paying a double mortgage and have been trying really hard to get my old house to sell. I am having some money issues because of that. I’ve had close ones in my family who are going through serious health issues and I am trying to get ready for teaching new classes this year. But still. This feeling is just so weird. I’ve never experienced anything like it, and I’ve dealt with a lot of stress in my life. My nephew had a bone marrow transplant 2 years ago. That was extremely stressful. Wouldn’t this problem have occurred back then as well?”
He had no reply. None. Zip. So, I mentioned my Crohn’s and said that I know that sometimes patients have a hard time absorbing vitamin B12 which can cause neurological issues. “Could it be that?” I asked.
He jumped in and said, “Yes, well, that was my next step. We’ll get an order for you to have a blood draw and we’ll go from there. Call me if the problem persists,” and he shook my hand and told me the nurse would come back with my paperwork. When she did, the reason for the blood draw said “Anxiety.”
I left feeling defeated. I should’ve punched him in the face.
Tuesday morning came and I got 3 vials of blood drawn and a big bruise to show for it. No phone call with the results the following day, so when I had a stronger tingling and burning sensation in those places late in the evening, this time with tingling in my feet and a sensation like I had popped a thousand blood vessels, I called the doctor’s exchange. The doctor on call got aggressive with me and told me he couldn’t do anything about it over the phone and I better get myself to the ER.
His tone of voice made me want to punch him in the face.
One of my best friends was with me and she spent the four hours with me in the ER. She left my side later that night to go to my house and walk my dog. While she was gone, I was tired and thirsty so I pushed the call button to see if a nurse could bring me in some ice water. (It also should be noted that I sat back there for almost 2 hours prior to this with no nurse or orderly coming in to check on me.) My curtain had a gap in it and my door was open, so I could see a night nurse in front of me. She picked up the microphone and said, “Can I help you?” but the speaker in my room wasn’t working. She was maybe 10 feet away from me, so I simply waved at her and said, “May I have a glass of ice water, please?” She pointed at my speaker and mimed that I should pick it up. I did and told her in a louder voice, “It’s not working?” She said from her desk so I could hear her, “Try it again.” I put the speaker up to my mouth, pressed the button and loudly said, “It’s not working!” She rolled her eyes, and defeatedly asked, “What do you need?” I gave her my request and she barked to an orderly, “Can you go see what she needs?”
I wanted to punch her in the face.
After meeting with the ER doc for 5 mins and giving him a synopsis of what’s going on, he ordered a CT Scan of my brain and said they should have my blood work results in about an hour. My nurse finally came in and saw that I wasn’t wearing a hospital gown. He gave me one and he handed me a pee cup and told me to go to the bathroom and pee. I did as ordered and came back and put the ugly gown on.
About 2 hours post CT Scan and blood draws that left another bruise on my left arm, the doctor came back in and said, “Well, I have good news. Your CT Scan showed nothing and your blood work came back excellent. Everything looks great, but I think your problem is neurological. I think you have MS.”
I immediately retreated into myself. “What is going on?” is all I could think. I pulled back up from a drowning sensation in my mind and I heard him talking to my friend saying that he recommends a great neurologist and that he will do a MRI and can see the MS problem right there. I asked him, “Is this debilitating? Are you sure? Can you diagnose this without further tests?” It was the best I could muster seeing how I felt like I had been punched in the face with his words.
He bested me and said, “Oh, a MRI will show more than what a CT Scan can. But your symptoms are MS symptoms.”
I got scared and asked, “Can this be debilitating? Is it urgent that I get this taken care of right away?”
He then replied, “Oh, some people can go their whole lives with minor symptoms like you have, while others can become very debilitated and wind up in the nursing home. It’s a very debilitating and unpredictable disease, for sure.” He then handed me the paperwork and told me the doctor’s name and excused himself and said, “Good luck,” and walked out the door.
I was left with my friend holding me as I cried and imagined that I would be alone, curled in a fetal position, drooling and living in a nursing home before I was 40 years old.
I should’ve punched him in the face.
I’ve had a few days to think about what happened in the course of less than one week. I’ve not ruled out going to see the neurologist, in fact I scheduled an appointment for next month. I found out that my B12 levels are fine as well, so it’s plausible that my Crohn’s is not a cause of what’s going on. And that’s the thing, I just wanted to have an opportunity to talk to my doctor and have him listen to me before sending me into a tizzy about what was happening with my body. After all, I am the one experiencing all of this and notice all the nuances and factors that are bringing these sensations about. Now, after seeing him and having my traumatic experience in the ER, I sit and worry about whether me forgetting my friend’s friend’s name in a story we were sharing is a symptom of MS. Or, if me feeling a little woozy and nauseous today is a sign of MS (turns out it is more likely a sign of a scone and coffee not being a substantial breakfast). Or, when I bump into something while I’m thinking about all I have to do that day is a sign of MS.
I’ve gone through a range of emotions these past few days and talked to my friend who has had a definitive diagnosis of MS. She told me that during her journey to getting diagnosed she learned that doctors liked to use MS as an umbrella term for any neurological issue they can’t explain right away. She did reassure me that if in fact I do learn that I truly have MS that I can lead a full, happy and normal life and manage it just like I manage my Crohn’s. She encouraged me to keep a positive attitude and to call her at any time.
I didn’t want to punch her in the face. If I could’ve jumped through the phone, I would’ve hugged her.
Where I stand now on this issue is that I want to go deeper in my yoga practice and work on meditation and doing poses that make me feel strong, grounded and stretched out and pain free. I do notice that when I am calm, the burning sensations go away. I also know that I want to listen to my body more and explore Ayurveda medicine which looks at your body, mind and spirit as being part of a big system, and work in conjunction with Western medicine, which breaks the whole into smaller parts. I booked a massage with the best massage therapist I’ve ever been to and explained to her what’s going on with me. She is working on putting together a session that will address those issues. So, I’m good. I will honor my body and do what I feel is best for it.
True, glitches in our physical bodies are out of our control and sometimes we need medical treatment to heal, manage, or eliminate them. Our mental attitudes on how we approach the treatments and the medical process are not out of our control. From now on, I’m not going to let doctors bully me, ignore me, or see my body as just car parts. I sometimes think we forget in this society that we’re paying for their services and they have an obligation to us to heal us, and part of healing is how they listen to us, speak to us, and honor our wishes and our bodies as well. They don’t control our mental outlook on our bodies, our journeys in this world through our physical beings. That’s for each and everyone of us to determine in this lifetime.
But, that philosophical platitude being said, If I see any one of those doctors on the street, I might just punch him in the face.
For those of you following my 100 Day Creative Writing Challenge, this is Day 33: Anger