Yesterday, I was telling my husband a funny story of how I had mixed up, while talking on the phone to my mother about vacuums, the word "Eureka" and "urethra." It was hysterical and I laughed so hard, that right away, the top of my scalp went taut, my scalp burned and tingled all over, and also down the back of my neck. My arms started to ache, my hands and fingers. Extreme and diffuse weakness. And when I ran my hand through my hair, the follicles were particularly painful. And I also started to sweat and feel very flushed.
I can't allow myself that kind of abandon. I will always pay for it neurologically. I turned on my little fan, and then gave up trying to feel better and laid down and fell right to sleep for 90 minutes.
Last night, while sitting in the recliner, I awoke to become aware that I had drifted off to sleep. The time was 11:45 and my head had lolled off to the left and down, with my chin on my chest.
Not a good position for me to have held for an hour. Knowing what I have come to learn about our anatomy and the position of my odontoid (C2) bone next to my brainstem, a position like that is...well... to be avoided.
Today, I noticed a lot of extra symptoms and added pain. In the morning, even after two doses of oxycodone, the right back side of my head stabbed with pain, the pain ran up over my head into my eyes, particularly the right one. I had pain in my right arm, my right hand, my right leg and stabbing pains in my right foot.
I also have had trouble with typing, letters all mixed up and I have to try over and over.
Lots of extra weakness today. And tonight, severe, burning itching all over, most of all on the outside of my right elbow. Deep, penetrating, lancinating stabs of pain that take over my whole body and brain, stop me in my tracks, take my breath away. I've been sitting with ice gel paks on my arm a lot tonight, scratching my back and shoulders and arms with the spaghetti tool.
I had asked the pharmacist if I could take Benadryl when these parasthetic itchings come on, and he said he did not recommend it, combined with the oxycodone I'm taking. He was afraid it would suppress my respiration. That blue tablet, Benadryl Severe Allergy and Sinus Headache, used to do a good job on the itching.
One thing I've not written about but has been common for me for the last 4.5 years is that if I stop to notice (and I do several times a day), my body is very tense all the time. I might find my right hand clenched in a tight fist, or my "glutius maximus" muscles extremely tense, even though I'm relaxing in the recliner or in the car. I have no idea what this means, whether it is evidence of the Post Traumatic Stress Disorder, or something else.
Early tomorrow morning, I have an appointment with my hematologist/oncologist. First, at 8 am, they will pull blood for tests; next I will meet with Dr. Fu; and finally, I will have the 3.5 hour IV drip of pamidronate, the bone strengthening regimen I've been on for 18 months.
I intend to tell Dr. Fu that I am very anxious to move ahead with the fusion, and that I want him to schedule me for the new Bone Density Scan (DEXA). From this, he will tell me if he thinks it's finally time to schedule the fusion surgery, and I will pass this all on to Dr. B, and hopefully will move ahead.
I say I'm " anxious" to have the surgery. I'm very nervous about it. But I have studied and researched and interviewed patients with this surgery, I am getting much worse and quickly, if I'm going to do it, I need to bite the bullet, cowboy up, set my jaw and get 'er done.
Bet Larry the Cable Guy never expected his slogan to be used in an instance like this.