Reactions

The only reactions I can sense from the steroids are insomnia - even valium can’t knock me out. I slept only a couple of hours last night, but refrained from getting up and vacuuming the house at 3:00 am.

And the kids have mentioned that I am more talkative than normal. Michael says I am "me times 1.5.” He likes it because I am easier to converse with. 

Oh, and I’ve had a strange shortness of breath when mowing the lawn (I had to quit after finishing the front yard - the back will just have to wait a couple of days) and when climbing even one flight of stairs.

No psychotic episodes or hallucinations. Just a little extra drive than normal.

Enjoyed the evening with Michael and Dez and children. I've missed them. Spent a lot of time in the hammocks with Evylee and Ethan, then they drove me to David's and Katie's for little Kylie's birthday cake and ice cream. (Driving kind of freaks me out.)

The IV

Dr. Digre wanted me to start the three-day dose of steroids ASAP. Problem was, it was a weekend. Her receptionist arranged to have the medication kit delivered and to have an infusion company assign a nurse to come to my home to insert the IV into my arm.

The nurse’s name was Stephen.  He seemed a little a little gruff on the phone, but softened when he asked me about the veins in my arms. “I have great veins,” I told him. He replied, “I love you already.”

He was a military man; he made home nurse visits as a side job. I mentioned that I was planning to play a Symphony concert at Deer Valley tonight and asked if he could place the stint in the middle of my arm where I could hide it under a long-sleeved white shirt and it wouldn’t bother me too much. He exclaimed, “You’re planning to what?” We laughed about the possible psychosis the steroids could bring on and the strange reactions I might experience at the concert -- like suddenly standing up on my chair and offering up my own rendition of Orange Blossom Special or something.  I was a little nervous about how I would react to this stuff.

First dose went in smoothly. Burned a little, but nothing I couldn’t handle. Experienced a nasty bitter metallic taste in my mouth, but that was all. 

The IV itself was an amazing little contraption. Instead of hanging a bag on a stand and having to be stationary until it empties, the medication is screwed into the stint and then I can just stick it in my pocket and go about my normal activities. It empties on its own in about an hour, we unscrew it, flush the stint with saline and then insert heparin to prevent the blood from clogging. It is quite a slick process.

The symphony concert went well and no one was the wiser. Amazing that I could execute the difficult passages with clarity and increased speed. I smiled to myself about this aspect. I think Jack Ashton, my stand partner sensed something, because he kept turning the stand my direction. Maybe he was just being his usual kind and thoughtful self.

The Pity Party is Over

And now it is time to adapt. I was scheduled to play for the recording session of Jenny Oaks Baker’s new Christmas album this morning. I figured I had better get used to what I have to work with. Lucky for me, a person can’t tell anything is wrong by looking at me and I was able to keep my situation a secret. My eyes move together, and my pupils still react pretty much the same. 

Reading music with just one eye took some getting used to, but it really wasn’t too bad. My right eye was a little tired of pulling all the weight after three hours and I had a bit of pressure behind my bad eye,  but I was relieved by how well it all went. Maybe if I had used a patch over my eye, my brain would have been able to sort through it all a little better, but because I knew it was imperative, my increased concentration level made up for the confusion.

I have a son-in-law who lost the use of one eye when he was 16-years-old. He copes so well. The only thing that is a little off is his depth perception; a person really needs two eyes for that. I soon found this out when I accidentally knocked my stand partner’s bow off the stand and whacked the viola player next to me with my bow. I’ll just need to keep myself in a tidy little package. Oh, and when I left the studio, I thought there was a step, but alas there was none. That was a bit awkward.

I was a somewhat nervous about my appointment with Dr. Digre. Today I will find out about my MRI. Of course my blood pressure sky-rocketed. Why do I have such a white-coat problem? 

I saw the familiar face of Dr. Adesina first thing. He is a kind and compasionate Afro-American optic neurologist working with Dr. Digre. He made an appearance in the ER on Monday to confirm Dr. Tabin’s opinion. For the next four hours I went through various eye tests and balance and strength tests to rule out a stroke. They checked my field of vision and the inflammation in my optic nerve. Dr. Digre came in and did the same tests to confirm Dr. Adesina's opinion. 

They feel strongly that I have Optic Neuritis. The protective insulation around my optic nerve is being attacked and is deteriorating leaving my optic nerve bare and vulnerable. They let me view my MRI which showed five or six other lesions in my brain also; this is indicative of Multiple Sclerosis. I am scheduled for a spinal tap and a slew full of blood tests on Monday morning bright and early. If Optic Neuritis is truly the case, it is likely that my vision could return partially or maybe even completely with “weeks or months.” To treat this they first give me a high dose of steroids through an IV for three days in a row. I will begin this treatment tomorrow. No sense in wasting any time.

Dr Digre was very kind and mentioned that the two of us were going to become very good friends in the next little while. I will be spending a lot of time in their clinic.

We came home hopeful and grateful that it was not a stroke or tumor and that there is a possibility that my eyesight will be restored. Randy has been such a brick through all this - calming my fears and all, but tonight at dinner he broke down and sobbed. We hugged and cried together. We are SO relieved and grateful. 

I'm Trying to Be Brave

I couldn’t sleep very well last night, so I arose early and went for a walk. I enjoyed the morning glow of the sunrise, the pink roses (yes, I stopped to smell them as I passed by), a tiny bright yellow finch on a lavender sprig... I have spent a lot of time thinking about the many things I wouldn’t be able to do if my sight was taken from both eyes. The list is alarming, so I attempted to think of the things I would STILL be able to do -- not very encouraging either.

I have to admit that today I broke down with lots of tears. Not knowing what is going on is very frightening to me. 

Randy and I attended the Draper Temple knowing that serving in the House of the Lord always brings perspective and comfort.

I thought the afternoon would drag on forever... My MRI was at the University Hospital at 5:30 pm. They had me dress in a hospital gown, started an IV, stuck headphones on my head, clamped my head down to keep it immovable, handed me an emergency beeper, and rolled me into the tube. I attempted to listen to classical music, but the banging, pounding, and shaking were pretty overwhelming. The MRI lasted one hour during which I was asked to remain motionless with my eyeballs “staring” straight ahead. At one point, the vibrations made my nose tickle. I tried not to, but finally let out a giant sneeze which jerked my head. Afraid that I had messed up the MRI, I pushed the panic button. The technician said, “What’s Wrong?!” and after hearing my plight, he kind of scolded me for stopping the test. If there was a problem, HE would have stopped it. I was only trying to be perfect. Three quarters of the way through the MRI, he injected “contrast” into my IV. Fifteen more minutes and I was finished... gratefully.

Now I just have to wait for my appointment tomorrow at 1:30 to "see" what's up.

I am Not Alone

I didn't think it was possible, but my eye is even worse.  Today I can’t see shapes or colors - just a big gray blob and a smidge of something on the temple side of my periphery. We called the Dr. Tabin to see if I really had to wait until tomorrow evening for an MRI. They tried to move me up but were unable, due to the fact that one of their machines was down.

Gratefully, always positive Audrey kept me company this morning, helped me see the bright side, and kept me busy and occupied.

I received a visit from Pat T. who brought the most beautiful bouquet of flowers.  I have SO enjoyed gazing at them with my right eye, absorbing their beautiful colors. 

What a wonderful and exemplary friend Pat is. She is our ward Relief Society President. She let me know that the ward would be fasting for me on Sunday -- a very humbling and touching gesture. 

Knowing that she has had some serious health problems, I asked how she is doing. “Fine until two days ago,” was her reply. Her latest mammogram came back clear; but she just found out that she has a four-pound tumor in one of her kidneys and will have to have the entire kidney removed this Tuesday. Oh Pat, I am SO sorry.

Our Bishop came for a visit also. He left us with a prayer of comfort and blessing. He spoke of the MANY ward members with health issues. The ward is fasting for 11  sisters this Sunday. He, himself, has had his shoulder and his hip replaced this year. This week he is having surgery on his elbow.

Isn’t mortality exciting? 

My Left Eye

Thursday of last week, I noticed that the vision in my left eye had suddenly gone fuzzy. It didn't seem to matter whether objects were close or far away. These images pretty much replicate the difference between my right and left eyes. 

By this morning (Monday), my vision was even worse. I visited with Dr. Bradley Fellows, Randy’s ophthalmologist, who found that my optic nerve was swollen. He made multiple phone calls and together they came to the conclusion that I should see Dr. Kathleen Digre, an optic neurologist, at the Moran Eye Center. He, however, could not get ahold of her. He wrote her name and my condition on the back of his business card and advised that we go to the ER there and have her paged. He said, “They will try to have you seen by a resident doctor; do not settle for anyone but her.”

We immediately drove downtown to the Center. When we requested this of the receptionist, she just looked at us skeptically, and as much as said, “who are YOU to ask me to do such a thing? She is very busy and sees people from all over the nation. Her schedule is booked up until the end of August. The doctor who referred you isn’t even a REAL doctor!” 

Randy replied, “So...What is my wife just supposed to do? Go Blind!?”

The receptionist softened a bit after that and assured us that if we stayed where we were, a REAL doctor would see me and would get the ball rolling. 

Dr. Fellows called and left multiple messages with their office, “This is CRITICAL! If this woman looses her eyesight, I will PERSONALLY sue the pants off you!” It was nice to know he was on our side.

I was in the ER for nearly five hours and stumped multiple doctors. For each possible diagnosis (MS, stroke, virus?) I should have been exhibiting additional symptoms. I just don’t fit into any of their boxes. Plus my vision is more impaired than the nerve shows reason for.

I am scheduled for an MRI on Wednesday, and have an appointment with Dr. Kathleen Digre (yes, this is the doctor Dr. Fellows wanted me to see in the first place!) on Thursday. Ironic, don’t you think, that after five hours and a few thousand dollars, I will be able to see her after all?

Randy and Matthew (who happened to be just a mile or so away at his parents’ home) gave me a priesthood blessing. I am to trust the doctors and according to my faith and the will of the Lord, my sight would be restored.

I notified my siblings and my children. We will have a family fast on Sunday.