Sunday, July 14, 2013

After Nearly One Year

It’s been nearly one year since I experienced vision loss in my left eye and was diagnosed with Multiple Sclerosis.

For the most part I have felt good. Once in a while I have tingling or numbness in my forearms and shins, and becoming overheated drains me completely. Sometimes I feel as though I can’t think clearly, but maybe age is creeping up on me. Many  days I could actually forget that I have MS at all.

I figure I have given myself 45 Injections of Avonex. That’s once a week. I use the “pen” and get a three month supply sent to my home in a refrigerated styrofoam box.  

The click of the trigger still freaks me out a bit, and the ten seconds that I keep the needle in my muscle isn’t very pleasant, but I am grateful that I am able to do something preventative. I have qualified for assistance from the pharmaceutical company for one more year and am not required to pay the $1000 a week at this point.  I take the injection at seven o’clock AM on Sunday mornings just before I drive downtown for Music and the Spoken Word. That gives me time to perform before the reactions set in six hours later. At that point a slight fever sets in causing my eyes to go a bit haywire, and I experience achiness especially through my neck and back.  I have found that the reactions are less severe when I drink lots of water and take four Advil every six hours with Tylenol in between...

...Until Mondays. Then something happens. Most days I am typically me -- pleasant, smily, kind of easy going. 
But on Mondays. I think I turn into Mrs. Hyde or something. Randy jokes that he has to hide the scissors, knives, and matches! I don’t like myself or anyone or anything else and I can’t do anything right! Gratefully it only lasts one day. It’s best  if I just stay home and hide.

The medication has given me insomnia for which I was prescribed the generic Ambien. It works well. I can sleep from 11:00 pm until 3:30 am. I wake up for a few minutes then sleep again until 6:00. I was concerned about being dependent, but I found when I tried to go off it a couple of weeks ago, that my sleep is more important than my pride. It is possible for me to do without it, but I wake nearly every hour and feel pretty messed up in the mornings. 

On to the Clinical Study -- I have donated hours and hours to the Moran Eye Institute as a part of their Optic Neuritis study. These are NOT my favorite days as they serve to remind me that I have a problem. I do receive a gift card of $25 each time I go. So far I have saved them up. I want to purchase something meaningful when all is said and done, but I have NO clue what. Let me know if you have any ideas.

As part of the study, I have received 8 or so MRIs. On some days they test a new coil mri -- a spooky mask of nuts, bolts, and various colored wires. During the MRIs, it is required that I keep completely still and stare at one spot for up to an hour. Ever tried doing that? If you do, be sure that you get plenty of sleep the night before. One time I fell asleep and they couldn’t get even one good image. Twice, the vibrations made my nose tickle and I had to sneeze, bonking my head on the machine. Botched again! I really don’t know if I am much help in that respect.

Periodically the results are read by Dr. Katz, head neurologist for the study, and once in a while they send me his remarks. Last time I received them, I read them, then handed the papers to Randy, who took one short look, threw them on the counter and exclaimed, “I have seen enough! 

You got an F in sex!” 

Okay! THAT caught me off guard! Gave us a good laugh together!

I’ll have to admit that this diagnosis has effected me more mentally and emotionally than physically -- Is this a symptom? Is that a symptom? When and where will the next nerve myelin be attacked? Is this affecting my behavior?

Nothing significant has happened until this week.

I’d been experiencing a strange sensation in my right “good” eye for the past few days, and some pressure and tenderness to the touch since Thursday, plus my vision HAS seemed a bit distorted. I wondered if this is a precursor to another nerve attack?  I called Dr. Digre’s office on Friday but had to leave a message. I became increasingly concerned as the day wore on.

I might mention this has been an especially rough week. I haven’t felt myself. I had a feeling I was ramping up for another MS exacerbation. My eye had me a bit spooked.

Randy happened to take a business portrait this afternoon for Dr. Alldredge, the retinal specialist who donated his services and fixed the holes in Randy’s retina a few years back.  Randy expressed concern about my situation; Dr. Alldredge asked if I would be willing to meet him at his office in downtown Salt Lake tonight at 7:30pm -- I couldn’t believe he was willing to see me on a SATURDAY evening and was somewhat hesitant. Randy felt I should go.

Audrey invited me to attend the temple with her. While serving in initiatories, I received the distinct impression that I should go. And I did. Dr. Alldredge found that the optic nerve of my right eye was indeed, inflamed. Optic Neuritis again! Interesting that it is just shy of one year since I experienced vision loss in my left eye. The doctor gave me my first dose of solu medrol (a steroid) to reduce the swelling.  He will meet me tomorrow to do the same, and then check my situation on Monday.

I’m so grateful that I didn’t wait this time. I consider it a miracle, not just a coincidence that Dr. Alldredge came in for a portrait today. Three people listened to the whisperings of the Spirit and were an answer to my prayers. Dr. Alldredge who felt the need to have his picture taken after 21 years, Randy who expressed concern for my wellbeing, and Audrey who invited me to the temple where I could receive inspiration for myself. Today I experienced the hand of God in my life. I am truly blessed.

Tonight, and tomorrow night, you might pray and ponder, asking the questions: Did God send a message that was just for me? Did I see His hand in my life or the lives of my children? I will do that. And then I will find a way to preserve that memory for the day that I, and those that I love, will need to remember how much God loves us and how much we need Him.
--Henry B. Eyring


  1. You are constantly in our prayers. We wish we were there to help in any way. We love you and know everything will be alright.

  2. Is that Claron Alldredge? He is married to Emy's (Michael's wife) aunt. They went with us to the Philippines to dive. He's great!! Sorry you're having troubles again. Randy no longer works for Warner so I may never see anyone again. Take care!!