Today’s adventure is starting on the couch. After spending a fun, but very cold day at Carowinds on Sunday and working yesterday, I am exhausted. I stared at the floor that needs swept & the pile of dirty dishes in the next room and decided that it would be easier to type up the second part of my diagnosis journey instead. Those tasks can wait until my energy level recovers.
We left off with a misdiagnosis of occipital neuralgia which meant I ventured into the pain clinic for occipital block injections. These are scary to think about, but in reality they are not too terrible. Before giving the first one, the Dr. explained that the injections will be given during an ultrasound of the back of the lower skull. He then went on to tell me that the reason for doing this is to be sure the injections are placed in the correct location. Being slightly off could cause partial paralysis or, better yet, turn me into a vegetable. Welcome to what I called the weekly round of “Russian roulette”! For added fun, they may blur your vision for an hour or two. Freaked me out the first time since no one bothered to mention that, so if you ever have to get them and that happens, no worries!
Each week I would have a new symptom: my right arm would go numb, my legs would feel like my feet were planted in cement, my left arm would go numb, my left leg would feel really weak, etc. While driving to work one day, I felt a vibration in the middle of my spine and was trying to figure out how in the heck my cell phone had gotten behind my back. I searched while stopped at a red light only to discover my phone was on the passenger seat beside me. Weird. I could’ve sworn that I felt it vibrate from a text message. For the next few weeks, if you saw me jump a bit in the middle of a conversation, that was the reason. Every time I received my blocks I would ask the Dr. if that was normal for occipital neuralgia & each week I would get the same response: everyone responds to pain differently. I knew my headaches were bad & my pain tolerance is pretty high, but I found it hard to believe that I was in enough pain to cause all these random symptoms.
After receiving the occipital blocks for 6 weeks, I was told that I had been given the maximum and would have to wait another 6 weeks before resuming them. My speech hadn’t slurred for a couple weeks & some of my newer symptoms had come & gone so I thought maybe they had been helping a bit. The first week without them was okay since it was the normal timeframe between shots, but the second week was interesting. Each day I felt worse & another symptom would return until I collapsed at work one day. It was super embarrassing to have them practically carry me through the store & out to the car in the parking lot. I told myself that since my symptoms usually got better overnight, I’d be fine again in the morning. Haha! My body had other plans. In the morning, I was still unable to stand on my own & we ended up going to the hospital.
Doctors and nurses assured me that the walker they gave me would only be used while I was at the hospital. A few days later, they changed their tune & it would only be for a few weeks at home while I did physical therapy. Eventually, it became “The walker is your best friend & you should never leave your best friend alone.”
Hanging with the walker my incredibly talented sister painted for me
It’s been just 2 years since MS tapped my shoulder & insisted I pay attention to it. My "best friend" & I are still enemies at the moment, but I’m grateful for my friend’s presence at some point each day. Every time I see a new Dr. or speak with someone else who has MS I hear the same words: “Wow, that’s fast for MS!” I guess it must be true since I’m told that so often, but I’m just lucky. MS certainly isn’t funny, but I’ve become clumsier than ever & laugh at myself & my situation often. No worries! It could always be worse!
Anyway, that’s the gist of my personal introduction to MS. For those of you who are also battling your way through daily life, I would love to hear your stories!
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