Results

Call me chicken. It took me two days to get up the courage to call about my lab results. I was curious, but didn’t want to hear if the news was not positive. 

I called and left a message before noon....

Dr. Digre called back at about 4:30 apologizing that she hadn’t phoned earlier. Some of the blood tests hadn’t come back.

After asking how I was feeling, she got right to it. 

Blood tests - normal (That’s good.)

Lumbar Puncture (Spinal Tap) was suggestive of Multiple Sclerosis-MS, but not definitive. Seems I have “some markers” in my spinal fluid just as I did in my brain. Something about the fact that the Oligoclonal Bands are elevated. 

As I mentioned before, they also found that the pressure in my spinal fluid is elevated. Dr. Digre seems to think that this might also have some bearing.

Do I have MS? All she can say is that I might, but she’s not 100% positive. We will talk more at my appointment on the 16th and discuss whether she feels I should see an MS specialist.

She ended the conversation with, “Do you see any improvement in your vision?” 

I gave her a resounding, “YES!”

She concluded, “That is WONDERFUL! I can’t express how THRILLED I am to hear that the steroids are working so quickly!”

Maybe it is the steroids; more likely it is the steroids coupled with the faith and prayers of so many sweet, thoughtful, beautiful, treasured family and friends. I do believe I have witnessed a miracle!

GREAT BIG hugs to all of you! I realize that I am not “out of the woods” yet, but I am in the right hands. And today, I am SO grateful for so many things!

Too Cute

It was getting kind of late; the sun was setting. Evylee (4) and Ethan (2) and I were pulling a few weeds in the vegetable garden.

“Evylee. What time do you usually go to bed?”

“Oh... About Thirteen.”

“Wow. That’s kind of late. When do your mommy and daddy go to bed?”

“Fifteen!”

I "See" Some Improvement!

It’s 5:35 am. I’m not certain the steroids were expected to work so quickly; I was told it might take weeks or months even, but I really do see some improvement this morning! The tears of gratitude just keep coming! Now to pray that today’s spinal tap and scores of blood tests come back normal.

The procedure was scheduled for 9:00 am. First thing, I asked the nurse if she could remove my I.V. since I was all finished with my infusions. She shook her head and said she could get in BIG TROUBLE (actually she said she would get her “butt kicked”) if she took it out. She told me I would have to call a home health nurse through the same company that put it in. Then she looked at me sympathetically and said, “I will do it on one condition; that you don’t tell a soul.” I promised (this blog doesn’t count, right?) She locked the door, and freed my arm from the itchy contraption. I was SO happy to have my arm again!

She took my blood pressure - of course it was high. It is every time I go to the doctor. Then my temperature - 100.7 degrees, and I was flushed too -- It was the steroids. Gained 6 pounds in 3 days -- again, the steroids. Nice I could blame it on something besides myself.

The spinal tap (lumbar puncture) took about a half an hour. It was performed by another optic neurologist who already knew all there was about me. The anesthetic was WAY more uncomfortable than the spinal itself. As the doctor drew the fluid, she noticed that it exhibited higher than normal pressure. This she mentioned, could account for the slight inflammation in the optic nerve of my good eye. Dr. Adesina detected this on my first visit, but Dr. Digre thought it might just be a part of my anatomy.

She removed four vials of fluid and showed them to me. Spinal fluid is as thin and clear as any of the purest water I have ever seen. I was amazed; I had no idea. She explained the possibility of acquiring a spinal headache. The spinal fluid holds up the brain and supports the skull. The skull drops down a bit when it is removed. Solution? Lie down.

I had nine vials of blood removed for testing also. I should be able to call about results tomorrow. 

I lazied the rest of the day on the couch. Matthew and Audrey took great care of me and David came to mow the backyard for which I was very grateful. No spinal headache! My back is just a little sore, that’s all.

Do I Have the Faith for a Miracle?

Randy left for Chicago this morning. He received a scholarship earlier this year from the Professional Photographers of America and had this seminar booked a couple of months ago. He was very hesitant to leave me, but I assured him that I would be fine, that he should go ahead and go. “And when you get there, ‘be where you are,’ “ I encouraged him. “Get the most out of this seminar that you possibly can, so that it is worth both your time and the travel money.” He will return on Wednesday.

Audrey and Matthew were so sweet to stay with me today. They will drive me to my appointment to have a spinal tap in the morning.

I have had a particular painting on my mind a lot lately. It is by the Danish artist, Carl Bloch, and is entitled “Healing the Blind Man.” 

Christ is reaching out to a blind beggar. To the left of Christ is a skeptic standing with his arms folded, doubting the scene in front of him. There is a curious child being restrained by a disciple. A hopeful follower stands to the left as well as a man who seems to have his eye on the sceptic.and Two observers receive a bit higher vantage point on top of the wall. All are watching and waiting.

The story comes from St. Mark 10:44-45:

 46 And they came to Jericho: and as he went out of Jericho with his disciples and a great number of people, blind Bartimæus, the son of Timæus, sat by the highway side begging.

 47 And when he heard that it was Jesus of Nazareth, he began to cry out, and say, Jesus, thou Son of David, have mercy on me.

 48 And many charged him that he should hold his peace: but he cried the more a great deal, Thou Son of David, have mercy on me.

 49 And Jesus stood still, and commanded him to be called. And they call the blind man, saying unto him, Be of good comfort, rise; he calleth thee.

 50 And he, casting away his garment, rose, and came to Jesus.

 51 And Jesus answered and said unto him, What wilt thou that I should do unto thee? The blind man said unto him, Lord, that I might receive my sight.

 52 And Jesus said unto him, Go thy way; thy faith hath made thee whole. And immediately he received his sight, and followed Jesus in the way.

This blind man didn’t have access to a myriad of doctors and their various tests, Optic Neurologists, MRI’s, steroids, spinal taps. He just needed to reach out to Jesus Christ with faith and he was made whole. 

God’s power is still on the earth today through the power of the Melchizedek Priesthood. I have been given the blessing of sight through that Holy Priesthood. I pray for the great faith of Bartimaeus that I too may be healed.

I have felt the faith and prayers of family and friends and the great comfort of the Holy Ghost. Already I am seeing shapes in my left eye. I sense that a miracle is just around the corner.

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.

The Collier Family Reunion

We began making plans over a year ago after Grandpa Collier’s memorial. It was SO nice to be together then, that Potts and I decided we wanted to do it again sooner than later. 

To make things easier for Grandma, we decided to bring the reunion to her in Bellevue, Idaho. 

We so seldom use our trailer because it’s pretty expensive to pull, but we decided to fix the water heater which blew out a couple of winters ago and give it a go. It would be nice to have an extra refrigerator and bathroom, if nothing else.

Audrey and Matthew joined us.  We loaded up the trailer and hooked it up to the Tahoe and were ready to pull out when Potts asked, “Do we have the power adapter?” An absolute MUST for a travel trailer. We hunted and hunted and couldn’t find it anywhere. It was 6:00 in the morning! Where were we going to find another one at 6:00 in the morning?!

You know what I say, “If you haven’t prayed, you are wasting your time!” We each said a prayer and guess where Potts found it?  -- wedged between the rain gutter and the house. There is NO WAY we would have found it “on our own.”

Grandma’s nice big yard became a KOA campground. EVERYONE made the extra effort to come. Denny and Marjorie flew in from Hawaii. Sarah, Eric, and Ben drove from Sacramento, and Tim and his girlfriend, Vyvyn came from Seattle. Each of our children and their families were able to come also, which is a feat in and of itself!

Family groups from left to right (kind of) Our daughter, Jenni, and her husband, Mark with their two, Sadie and Payton and one on the way. Randy’s cousin Carol and her husband, Dewey. Potts, me. Second cousin, Ethel and her husband, David. Our son, Michael, and his wife, Desiree, with their two Evylee and Ethan, and one on the way. Grandma Dolly in the center with Potts’ brother, Denny, wife, Marjorie, and daughter, Allison, behind her. My daughter, Emily, (in front of Grandma) with husband, Joseph, and son, Aaron Joseph (AJ). Grandma’s sister-in-law (Potts’ Aunt) Carmen, Potts’ brother, Tim, with friend, Vyvyn. Potts’ sister, Sarah, with husband, Eric, son, Ben, and two dogs, Rosie and Myra. Our daughter, Audrey, with husband, Matthew, and little one on the way. Our son, David, with wife, Katie, and four daughters, Paisley, Kylie, Oakley, and Lily.

There were the indoor people, and the outdoor people. Many who attended weren’t used to noise and crowds (and believe you me, we brought a crowd!); some seemed to prefer the indoors and spent their time mainly in Grandma’s living room, and those of us who didn’t mind the noise and commotion spent our time outside with the children.

But at meal times, we all became outdoor people. The food was the BEST. We divvied it out with different families in charge of different meals. It worked out SO well!

We had face painting (Vyvyn is a renowned tattoo artist and was SO patient! and creative!)

 Even the itty-bitty ones held very still.

Sarah and Eric brought fireworks. 

 

 

And of course we had to dig out our traditional Goldilocks and the Three Bears Skit for the unsuspecting.

We kept the kids busy doing this and that.

 

May I say that when I grow up, I would like to be like Aunt Carmen. She is a wonder!

And had an outing at the river.

Looks like Potts stole Joe's hat!

Of course it wasn’t long before a few of us attempted body rafting. 

What a blast!

We took time-out f0r some R and R. 

Our hammocks were the favored spot.

Sadie turned 4 years old while we were there and we celebrated her birthday with a piñata and delicious lemon-raspberry cupcakes. 

Early Saturday morning, Audrey drove Matthew, Potts, and me to Sun Valley. We biked the 19-mile path (yes, we wore helmets - for the most part) back to Grandma’s house. It was the ride of my dreams - beautiful surroundings, and mostly downhill! We were back within an hour and a half.

But my favorite part of the reunion was watching families mix and have a grand time together.

 Then again, that's what Family Reunions are all about!

A great big hug to all who came!