~~~

By May 25th, the pain my my feet and hands had increased to the point where I could not sleep at night anymore. I had contacted my neurologist and he was unable to set up the IV steroids as a course of treatment before the weekend. He suggested I go into emerg that day (Friday) to have them set it up directly at my local hospital. After a long 8-hour day waiting, it was then shift change at the hospital (7pm) and someone slipped up and didn't pass on the information to the next staff that I was waiting for a neurologist. Another hour later and the neuro left for the night, without seeing me. Once the staff realized their mistake, they called him on the phone and he refused to order the IV steroids, telling the staff to just send me home with morphine and to call my doctor on Monday. At that point I just broke down and cried. I had spend an entire day sitting in a chair waiting, no food, no water. I was exhausted. It was then 10pm. The resulting weekend was a blur. On morphine, I did sleep, yes, but it also kept me sleeping later than noon, and the rest of the day was a mental fog. Nasty drug! I managed to survive the weekend in that fog, not recalling much. Monday morning my neurologist's office profusely apologized for my misfortune, saying "that is not how it was supposed to happen" (referring to the hospital refusing treatment). So, they quickly were able to set up the infusions to start on the next day, Tuesday, May 29th at 2pm. One more day.. just one more day!! Tuesday came and I was VERY glad it did. By this day, my feet hurt so much, that it was very painful to put any pressure on my feet. Walking was NOT a pleasant option.  I had gone from 100mg of Gabapentin per day to 1200mg a day, and it still wasn't touching the pain.

Infusion Day #1 - May 29/12

 

This infusion was different.  Instead of a period of one hour to infuse, it was over two hours.  Now while this means I'm sitting in that chair for over two hours, I soon realized it didn't burn in my arm, and over the week, seemed to keep other side-effects away.  Normally, my arm wouldn't tolerate the IV for more than two days, but this time, I lasted the entire four-day bout without any arm irritation or redness!  Two hours is the way to go!!  My neurologist had prescribed Ativan to help with sleep, as the steroids can keep you awake at night, but no matter what I did, sleep did not come. I think I got only two hours of sleep this first night.  I had major leg pain that set in in the evening which made it very difficult to sleep.

Infusion Day #2 - May 30/12

 

Second day ... everything is going smoothly, just a little tired.    Jordan decided to keep me company which was nice.  I had also had an appointment with a head surgeon today regarding my facial pain from months ago. He says it is NOT MS related, but rather jaw deterioration. Stuck a nasty camera up my nose to see down my throat.. blech. With the clicking in my jaw, it's most likely deterioration that may have to be dealt with surgically down the road. He wants to see my MRI in July and also if it gets much worse, he will schedule a CT of my jaw and sinus cavity to see if there is possible infection which is causing the deterioration. Nice to know it's not all in my "head" .. well.. it is, but you know what I mean :) Bottom line: just because you have pain, it's not always chalked up to .. "It's just your MS".   

Stopped taking the gabapentin today .. I want to see how much I can handle and see if I am finding any improvement in pain.  My body is WIRED, yet so tired.  Thankfully, no leg pain tonight, and only feeling a little hot.  Very thankful the weather outside was cool, otherwise my increased body temperature would  have made any summer temp feel like a desert!   Took another Ativan tonight to help me sleep, but unfortunately, I only had around four hours or so this night.

Infusion Day #3 - May 31/12

Another rainy day, thankfully, because I was so warm it looked as though I was sporting a new sunburn!  This IV treatment day was mostly uneventful with respect to difficult side-effects. I can deal with feeling warm.   I find myself not thinking clearly.  This bout of steroids is really messing with my brain.  I find I have great loss of concentration and have difficulty focusing.  I'm sure it's just all that is flowing through these veins.. or at least that is my hope!   Tonight I thought I would try sleep without Ativan, as it certainly wasn't helping me sleep.  Sadly, it was another loss-leader for sleep, not falling asleep until around 5am, when I took an Ativan. I think I'll try a gravol for tonight.

Infusion Day #4 - June 1/12

My beat-up arm is happy to be free of the IV. Now if I can only get some sleep tonight!  It is actually much more bruised than looks in the picture.  Apparently I'm a good "bleeder". hehehe

I feel so very disoriented.  I can't follow conversations well.. More than two concepts are introduced into one sentence and I'm lost.  Freaky feeling. I am attributing it to having not slept for days and this solumedrol pouring through my being.  Dizziness is a common side-effect, but I'm sure Kirk will argue that is part of who I am anyway.  I am going to try to forego the Ativan today and try plain ole' Gravol, and see if that does the trick.

Thanks all for your prayers and offers of help during this time.

My father-in-law emailed me a devotional today, which I found very fitting to where our lives seem to reside lately, so I felt I should post it below.