Remembering Events in Life Based on Health Status

In looking back on things that have happened over the years. Some may say that “life happened” as it tends to happen for most anybody as the years go on. In our lives, it’s more accurate to say that “sickness happened.”

It seems clear in retrospect that the relentless onset of MS and RA over the course of 18 months, following five years of fluctuating symptoms (such as temporary blindness, heavy legs, painful feet/ankles, achy hands, etc), changed the course of my life irrevocably. Things began to be neglected.

There’s a virtual wall between how I was able to manage life pre-MS versus post-MS. It wasn’t until my mom and I were talking about things around the house that I realized - and truly and honestly acknowledged - that life has become punctuated by health events.

Read this post in its entirety:
Life Punctuated by Health and Sickness

29 Things About My Life With MS

What’s it like for YOU to live with MS?

One of the most important principles behind MS storytelling is sharing. Through that sharing, we work to increase awareness and understanding, which helps to decrease stigma.

Memes are popular around the internet, so I thought that I’d like to adapt one for our MS community. I invite you to participate by sharing your own answers. If you’d like to share your own answers to these questions here, you can copy / paste my responses and replace the answers with your own responses.

Here are the questions and my answers:

1. My current diagnosis is: relapsing-remitting multiple sclerosis.
2. I was diagnosed in: 2005.
3. My symptoms include: numbness, spasticity, visual disturbances, heat sensitivity, anxiety, fatigue, weakness.
4. My comorbid conditions include: rheumatoid arthritis, hypothyroidism, and depression.
5. I take: a number of medications for comorbidities, including a monoclonal antibody therapy prescribed for RA.
6. My first MS attack was: blinding optic neuritis in 2000.
7. My strangest MS symptom has been: the feeling that cotton fuzz is on my face, especially around my left eye, when I’m beginning to feel rundown.
8. My biggest MS symptom/relapse triggers are: heat! The heat and humidity of summer totally wrecks my ability to function normally.
9. I know an MS attack is coming on when: a myriad of symptoms seem to whisper, “hi, I’m back; remember me?” and won’t go away.
10. The most frustrating thing about having MS is: not being able to do as much, physically and musically, as I used to.

Read this post in its entirety:
29 Things About My Life with MS

How Am I Going To Pay For This?

The story continues.....

If you've been following MY STORY which I've been dragging out *FOREVER* (see links on sidebar), then you must catch the next saga.  I will very likely write much more about this chapter in my MS journey, but for now you get a rough/dirty version over at Health Central.

"How Am I Going To Pay For This?"

Here's a little teaser:

“Congratulations! You qualify for a 50% award!” says the woman from Shared Solutions.

What does that mean...50%?

“NORD (National Organization for Rare Disorders, Inc.) reviewed your application and determined that you are eligible to receive 50% of a year’s supply of Copaxone for free.”

Does that mean I have to pay 50% of the cost each month?

“No, it says here that you will get 6 months of Copaxone, will be responsible for paying shipping & handling ($100 every 3 months), and will be personally responsible for the other 6 months. That gives you time to save up for it.”

But I can’t AFFORD that!!

“If your financial situation changes during the year, you can appeal for additional help from NORD. I’d suggest doing that in the spring.”

To read the rest, go to "How Am I Going To Pay For This?"

Brass and Ivory gets a HornDog Review

I just want to say thank you to Bruce, Horndoggie extraordinaire, for the charming shout-out today.

Bruce wrote a touching review of "My Horn, the Metal Taco" story and the installments of My Story, beginning with "Eyes in the Back of My Head."

As time goes on, I will add more installments to the story.

Thank you Bruce.

****************

I also want to take this opportunity to thank those who have donated funds toward the purchase of a special air cushion for Herrad in Amsterdam.

So far, we have raised $300 which is half of what is needed.

Thank you, thank you to the donors who know who they are.

The doctor never said the words, “You have MS.”

[Begin reading my story with Eyes in the Back of My Head]

When I attended my first ‘newly-diagnosed’ meeting at the Neurology Center, patients were asking each other, “When were you diagnosed?”

The month was September 2005 and I recognized one of the other patients with whom I shared space at the Infusion Center in August. She was one of those MS patients who had received a quick diagnosis, not even requiring a lumbar puncture (aka spinal tap) to test for the presence of oligoclonal bands which are seen in the spinal fluid of 90-95% of multiple sclerosis patients.

“I haven’t been yet.”

That’s right. I had already undergone two rounds of MRIs; the first as directed by my primary care physician to look for the cause of a ‘pinched nerve’ in my neck, the second as directed by the neurologist from whom my doctor wanted an expert opinion. I had one lesion in my cervical spine (neck) but my brain appeared normal, although 5% of confirmed MS patients do not initially have brain lesions on MRI, according to the National MS Society.

It was after the results from the spinal tap came back that the infusion nurse called me on a Friday afternoon to schedule a 5-day course of Intravenous Solumedrol (IVSM) the following week. My road to diagnosis never included a hospital visit.

“So does it say in my chart whether it’s MS or not?” I asked the nurse as she was preparing to start the IV.

“What did the doctor tell you?”

“He didn’t yet,” I replied.

She gets the high-dose steroid drip started.

“Let me go find out what I can.” When she returns to the room of IV-laden folk, she informs me that the doctor is on vacation and that he’ll have to speak with me when he returns.

“But you wouldn’t be here if there weren’t a very good reason the doctor wanted you to have the steroids,” she adds.

I think it was Thursday when the doctor returned from vacation and the nurse grabbed him to come talk to me while I was tethered to the drip. Somewhere between the muttered words, and yes he tended to mutter and I tended to not be able to understand him, he mentioned demyelinating disease. Non-specific demyelinating disease.

It would be another round of MRIs and two more months before I was officially diagnosed during a doctor’s visit in which he never outright said, “You have MS.”

In the meantime I was invited to participate in the monthly ‘newly-diagnosed’ meetings held at the Neurology Center led by my (now) MS Nurse.

So when asked in September 2005, “How long have you had MS?”

My reply was, “I don’t....yet.”

How about you, how long did you have MS before you had MS?

The Mermaid in the Pool

[Begin reading my story with Eyes in the Back of My Head]

Once upon a time, many moons ago, there was a young mermaid. She lived on the land among the humans yet did not know she was a mermaid.

In her dreams, she shared the ocean waters with the giant manatee and the baby sea turtles. When life on land became troublesome, she felt trapped in a riptide and dragged beneath the darkness. But when life was fine, the water was crystal clear and sky blue.

The mermaid told of her dreams to a very good friend who suggested that she test the waters and go for a swim. 

The water felt cool and the pressure against her limbs was soothing. A few trips to the pool and the mermaid was hooked. She began to look forward to Mondays, Wednesdays, and Fridays each week and began to count how many laps she completed, each day, each week, each month.

The mermaid was thrilled the very first time she swam a full mile in the pool. She had never swum this way before. Oh sure, she had splashed around, but never relished in the flow of each backstroke. Nor had she ever tried swim flippers.

Not long, the mermaid saw clear blue waters during the day, everyday.

Then one day, the mermaid was swimming glorious laps in the pool. Flying through the water with the help of flippers and stretching far overhead with each backstroke.

Suddenly the mermaid hit a wall. Not the edge of the pool, but something nearly as hard and dangerous.

The mermaid had run head-on into a woman who had entered her lane and was lolly-gagging as she was chatting with friends.

Bam!! Right into the woman’s back, going at a rather quick clip.

“Damn, that hurt!!”

My head was crushed straight down into my spine. Muscles tensed, headache surged, all as the neck felt “cricked.”

The pain in my neck continued for days as I tried to recover. My shoulders were tight and playing my horn became uncomfortable. But that is not new, cause musicians often play through pains of which the audience is never aware.

The mermaid had a doctor’s appointment just a few weeks later and mentioned the tingling in her left hand. But she also mentioned the crash in the pool and both thought pinched nerve.

“Keep an eye on it and if it gets worse, let me know,” said my doctor.

A month later my new Sweetie (who I had just met the week before that doctor’s visit) was gently rubbing my shoulders. Then he was rubbing my back.

“That’s really weird. What’s going on?” she thought.

The mermaid couldn’t feel his hands on the left side of her back. The right side was fine, but the left side was numb.

Really numb.

So she called her doctor and scheduled a visit because she also noticed that her left arm was numb. From finger tips to spine, numb.

That’s when the doctor wanted to know more about the pinched nerve.

“I want you to have an MRI. Just get a better look at what might be going on in your neck,” the doctor said.

In the following month, the mermaid was meeting with a neurologist for an expert opinion. A monumental month.

July 2005, 100 MILES in the pool since the New Year and the transition to neuroland.


Next time: The doctor never said the words, “You have MS.”

Watch It, Smartie Pants

[Begin reading my story with Eyes in the Back of My Head]

Last week I learned that one of my former horn students graduated college and is engaged to be married. Wow. I thought he only graduated high school just three years ago. True. He graduated college in three years....the overachiever.

Brian began horn lessons when he was in 8th grade, 8 years ago. He was the type of student who resisted rote learning and avoided repetition much to my chagrin. Brian preferred to intellectualize everything.

By the time he hit high school, he was bold and confident. One of his 'endearing' traits was to correct you if you spoke incorrectly. This served to highlight the oddities in my verbal skills which had increased in recent years.

Even as a teen, I would transpose syllables within a word or between two different words, often jumbling it such that two nonsensical words emerged. It wasn't until Brian that I became aware that I was frequently substituting words completely. The only connection which seemed to be present was that the new word often started with the same letter as the correct word.

This little oddity almost went unnoticed as long as I kept going in the conversation and didn't pause. Until Brian....

He would stop and correct me, providing the correct word. My interrupted response was usually along the eloquent lines of, "What?"

"You said measure and you meant metronome."

"Well, ok. You understood what I meant. Let's move on."

This continued through the years 2000-2005 until Brian graduated high school. These years also correlate with the time between a major optic neuritis attack in 2000 and the eventual multiple sclerosis diagnosis in 2005.

Sometimes Brian and I would circle around the correct pronunciation of a word. Take for instance the word - respite. I preferred: \ˈres-pət\. Brian insisted that was I incorrect and that it is: \ri-ˈspīt, or ˈres-ˌpīt\. It's very silly, but we circled around this difference for minutes. He thought that my Okie roots had corrupted my pronunciation skills.

Brian also would complete my sentences for me if I paused for just a moment. Often he was correct but sometimes he guessed my thoughts incorrectly. It was hard to fluctuate between not wanting him to "put words in my mouth" and resorting to "you know what I mean."

There have been other students to 'help' me along but Brian is the most memorable. It is somewhat common that MS patients experience changes in cognitive function and verbal fluency. I am special in that I have several human barometers who reflect my verbal deficiencies right back at me. Often we laugh about it and students get used to me asking, "does that word look right to you?" when I have trouble spelling the most common of words.

That's what this journey through life with multiple sclerosis requires - laughter.

Next Up:  The Mermaid in the Pool

Wo ist Beethoven?

[Begin reading with Eyes in the Back of My Head]

Early in the summer of 2002, I received a phone call from the orchestra manager for the AIMS festival in Graz, Austria. AIMS stands for American Institute of Musical Studies which is a 6-week intensive program for opera singers and pianists. The orchestra members range from seasoned professionals to college students, some choosing to return year after year. One of the returning horn players that year unexpectedly could not attend due to having won a spot with the U.S. Navy Band in Washington, D.C.

Besides playing lots of great music, we had a little time to travel on free days/weekends. A fabulous advantage the European countries have for easy travel is found in their extensive train system. Some of the popular destinations for the orchestra musicians were Vienna, Salzburg, Budapest, Prague, and Venice. A couple of guys even hopped on a plane and flew to Dublin for the weekend once, thanks to Ryanair.

My first trip out of town was to Vienna, Austria. Home of the former Hapsburg Monarchy in addition to generations of famous musicians. Haydn, Mozart, Beethoven, Czerny, Schubert, Johann Strauss I & II, Brahms, Bruckner, Mahler, Schoenberg, Berg, Webern, Ligeti, and others.

While in Vienna, two other girls from the orchestra and I wanted to visit Zentralfriedhof, the second largest cemetery in Europe, where a number of these famous composers are buried. Using high school Deutschgesprachen skills, I searched for Beethoven's gravesite.

Können Sie mir helfen? Weißen Sie wo Beethoven ist? Danke.

After encountering some women who were tending to the gardens throughout the cemetery, we finally found the Musiker. If we had only walked straight down the central lane towards Karl Lueger Kirche, we would have found the Musician's Corner on the left.

On another long weekend, we traveled to Prague where a bit more walking was required. This particular weekend it became apparent that I had become a nuisance for my travel companions. It seemed that at every opportunity I needed to rest on a bench.

Whew!!

Even the pregnant percussionist who was 5-months along had more energy than I did. Sometimes it took a great amount of effort just to keep up. My calves were knotted and my legs felt slow and heavy. I chaulked it up to being a little out of shape and having developed stiff, swollen ankles.

Although walking became difficult, I was very glad to have taken part of a tour of the Jewish Museum in Prague.

"Founded in 1906, the original intent of the Jewish Museum was to preserve artifacts from the synagogues of Prague that were being liquidated at the turn of the century due to reconstruction of the Jewish town. The museum was closed to the public after Nazi occupation in 1939. The Nazis decided not to destroy the Museum, but instead use it as a "Museum of an Extinct Race"; the Germans hired Dr. Stein, historian and founder of the Museum, to catalogue tens of thousands of confiscated items from more than 153 destroyed Jewish communities throughout Bohemia and Moravia."

We left Prague on August 11th just a day and a half before low-lying areas of the city were evacuated in anticipation of tremendous flooding. We were fortunate to have left a day early due to the rain as this was determined to be the worst flood to hit the capital city in 200 years.

After returning to the States and during a routine doctor's appointment (gyn), I mentioned the experience I had with swollen, stiff (and painful) ankles and the heaviness of my legs during my travels. She flippantly stated that the swelling was due to lack of muscle tone which was due to being out of shape.

What I didn't know at the time is that the lymph system relies upon muscle relaxation/contraction to help move lymphatic fluid out of our limbs and toward the heart. But if your muscles fail to relax sufficiently, then fluid gets trapped in your extremities. Too bad I didn't know enough to perform the appropriate yoga poses to maximize lymph drainage and induce muscle relaxation. I've learned a lot since then.

Next: Watch It, Smartie Pants

The Purple Jumper

[Begin reading with Eyes in the Back of My Head]

After the episode of optic neuritis in 2000, I kept my fingers crossed regarding health issues. The neuro-opthamologist explained that the current theory was that I would be at increased risk of developing multiple sclerosis within five years following a Clinically Isolated Syndrome (ICS), after which time my risk would return to that of the general public.

In the years that followed, I learned that my Primary Care Physician (PCP) was rather conservative in treatment plans. So I carefully decided when it was necessary to seek treatment. In 2002, I finally made an appointment to discuss the insomnia I had been experiencing for about three months. My sleep patterns had deteriorated to the point that I hadn't gotten more than four hours of shut-eye, the kind that actually takes you deep into REM sleep, in several weeks. When I became so weak that taking the stairs caused enormous shaking, I finally admitted that I needed medical intervention, ie help.

In addition to discussing the insomnia, I asked for a referral to a dermatologist to have some warts frozen off my left hand. My home treatments were serving to be rarely ineffectual. Instead, the doc had recently acquired a new toy, a wart-freezing device, which worked a little like a spray can. "We can do that here." Ok, sure.

First went the large wart over the big knuckle of my index finger. No reaction from me. Then the wart near the nailbed on the middle finger, followed by the one on my pinkie. A little ouchie there. Back to the big one. "That doesn't hurt?" Not really. More freezing to get it really good. The skin looks angry now. Hopefully that does the job. The doc leaves the room and I'm sitting in the chair next to the computer. Oh boy, it's starting to get a little hot in here. Sweaty. The room is beginning to look darker, gray.....sweating....dark gray....

At some point later the nurse comes back into the room. "ms. emrich, ms. emrich." Huh? "ms. emrich." Whaat? smelling salts, blood pressure cuff. I was still perfectly balanced with only my head bent over my lap and hands placed on the arms of the chair. I had passed-out cold. "here, drink this" 7-Up. Apparently the pain finally DID register causing a dramatic drop in blood pressure which caused me to faint. Classic vasovagal syncope reaction.

The doctor insisted that I sit a while to make sure I was okay to drive. She also stated, "let's get you some sleep." That was the first time I was prescribed Ambien as a sleep aid (which came in rather handy when I spent two months performing in Austria later that summer). I almost thought that I would be sent home to try less aggressive, behavior-modification therapy first. But I guess passing out unexpectedly has it's perks.

Sure fainting in the doctor's office was a little embarrasing. But not as embarrasing as what I discovered that night as I was preparing to go to bed. I reached to place something in the pocket of my purple jumper to take it upstairs. Where's my pocket? What?! My front-facing pockets were hiding on the back-facing portion of my body.

I had managed to get dressed that morning with my clothes on backwards. Nobody had said a single word about it all day long. Not the nurse who made me stand on the scale. Not my students who probably just wondered. Not even my Mom with whom I had eaten supper. I had been out in public wearing my purple jumper with the pockets in the back and the tag in the front.

What a rare sight that must have been. But at least, I would finally get a full nights sleep for the first time in months. I don't think I've ever made that particular clothing mishap again. I think.

Next: Wo ist Beethoven?

Red to Brown and the Great Gray Blob

[Begin reading with Eyes in the Back of My Head]

To continue with the story, on that Tuesday morning I immediately went in to see my optometrist to determine why the vision in my right eye now looked smeary. One of my lifelong (well maybe since my teens) fears has been to lose what vision I do have. I began wearing glasses when I was four years old and in kindergarten. By the time I was in Jr. high school, the near-sightedness of my vision had surpassed that of both my myopically-challenged parents. And now my vision is so poor without correction - I can still achieve 20/20 with appropriate lenses - that I am not a candidate for the current offerings of laser vision correction. Maybe someday when they perfect the technique of inserting permanent lenses underneath the cornea. I hear that's about as simple as cataract surgery.

So back to that morning, the visual exam was not turning up any clues until my optometrist brought out a collection of colored pipecleaners. You know the kind used for crafting projects and are available at stores like Michaels or Hobby Lobby. Well, Dr. Obremsky asked me to pick out different colored pipes using only my right eye. This is the test I failed. I had my pinks, whites, reds, and oranges all confused. So the doctor called ahead to get me an emergency appointment with a Retinal Specialist.

By this time it was apparent that I was not going to make it to the concert hall by 9:45am for the first performance at 10:00am. I called the personnel manager and explained a little about what was going on, although I really didn't know that yet myself. During this appointment, I was put through all the standard visual hoops and a few new ones. They determined that there was nothing physically wrong with my retina to explain the visual disturbances, but that I needed to see someone even more specialized. So they called ahead and informed the office of a neuro-opthamologist in Rockville, MD, that I would be arriving that afternoon to be seen.

From this 2nd eye appointment, I made it to the Concert Hall at George Mason University for the second 'Kiddie' concert at 11:30am. Here I am scared, vision blurry, pupils dilated, and a tad bit stressed. But perform and try not to show weakness I did. After this, my Mom and I - remember my Mom was kindly accompanying me all day - ate lunch before heading to Rockville to meet Dr. Katz, a neuro-opthamologist.

Dr. Katz's team put me through yet more tests, including a visual fields test on a massive machine. While trying to stare at the center dot and press the button when I saw lights flash elsewhere, my vision kept getting darker. I think it was this test which finally gave me a huge headache and I just wanted to curl up under a blanket, close my eyes, fall sleep to later wake up with perfect vision. We can all have fantasies, right?

He conducted a thorough exam, including color vision, again. But the most telling diagnostic tool came from an amazingly unofficial item. Dr. Katz used an eye-drop bottle with a bright red lid to hold directly in front of my line of sight. He asked me what color is was. Red, I said. He moved it slowly into my peripheral vision.

Whoa!!! Wait a minute.... The lid turned brown. No longer red, but brown. Did he pull a fast one and switch bottles, I thought. I knew he had not, but I also knew that it looked brown. How the heck did that happen?

Thus began the conversation about MRIs, brain matter, white spots, possible brain tumor, inflammation, multiple sclerosis, testing for lyme disease, and a bunch of other stuff which I couldn't digest. He ordered massive amounts of blood tests in addition to a round of MRI scans. He also discussed immediate treatment options which included going to the hospital three times a day for three days to receive an infusion of steroids or take an equal amount of steroids orally by using large amounts of cheap prednisone. The latter is what I chose primarily for convenience and cost sake.

On Wednesday, opera rehearsals began for Wagner's Tannhauser with the Baltimore Opera in which I was performing one of the backstage horn parts. An interesting tidbit about playing one of these horn parts in this particular opera is that you play near the beginning of the show and then must wait 2 hours to play again near the end. Lots of time for reading, talking, playing cards, or napping. Good thing, too, as I needed alot of downtime to deal with the horrible effects of the prednisone.

Probably the kindest word of caution that Dr. Katz gave me during that preliminary visit was that my vision would continue to get worse during the following days. I had responded so quickly to the changes that I still could see something out of that right eye and it was noticeably deteriorating throughout the day and becoming more painful to move.

By the following evening, all I could see out of my right eye was a wall of gray. It was as though someone had plastered gray paint over the window pane which is my cornea, but had left the outside light on. Funny. When I had thought of going blind, even if temporarily, I always thought that it would become pitch black. But in my case, it was a Great Gray Blob.

On Thursday, I went back to George Mason University to perform in two more 'Kiddie' concerts with the Fairfax Symphony and repeated those events the following week. On Friday, I caught a ride with another musician who was performing in Tannhauser. He was a violist who is married to a hornist in the National Symphony. He was very kind to carpool me up to Baltimore during the entire run. I wasn't comfortable driving while blind in one eye and the prednisone didn't agree with me.

When the radiologist report came in after the brain MRIs, I was relieved to learn that there was no tumor and more importantly that there was "no evidence of any demyelinating disease." I was lucky. It couldn't be MS. Dr. Katz put down in my records that I had experienced an isolated occurrence of optic neuritis with inflammation most likely due to the cold virus I had experienced the week before.

Who was I to argue. He also informed me that I now had an increased chance of developing multiple sclerosis. But if I made it five years without another event, then my risk reverted back to that of the general population. Whether this opinion holds true today, I do not know.

It took two months for my vision to return and about six months for my body to fully recover from the high doses of prednisone. Even to this day, lights are not as bright in my right eye and colors look slightly different when I compare the vision between my eyes. So now I have another barometer when it comes to MS. If pinks start to fade, it's time to call the neurologist.

Next: The Purple Jumper

Looking Through Vaseline-Covered Glasses

[Begin reading with Eyes in the Back of My Head]

In the spring of 2000, I maintained a very busy performance schedule in the DC/Baltimore area and a growing private lesson studio in Falls Church, Virginia. One of the finer details to freelancing I learned after moving to the DC area in mid-1998 was that in order to work, you must work. I know that sounds redundant, but let me explain.

In an area flush with qualified performers, it is vitally important to maintain networks, provide quality and reliable service, and to exhibit a desire to supply that service without any hint of desperation. Nothing makes you less qualified (if only in others' perceptions) than a desperation for gigs, inaccuracy or a sloppiness to detail, or the worse curse - unreliability. The axiom that you are "only as good as your last performance" remains true.

I remember vividly during March 2000 being booked solid with playing gigs. There was one week I was doing some extra work performing at a special convocation at Howard University. This was a good-paying job at union scale. We always want to play at union scale (or above). On that Thursday, I had a massive, snotty-nosed, purse-filled-to-the-brim-with-wet-tissues, ears-plugged kinda cold. The type of cold where others stay clear and you don't even bother trying to approach anybody. A nasty cold.

On the following Monday, I noticed something slightly off with my eyes. It was hard to explain but I called the optometrist anyway. With eyes as near-sighted as mine, I had been repeatedly warned over the years about the dangers of a thinning retina. I got myself into the doctor's office to get it checked out. Without anything obviously amiss, he instructed me to return immediately if it got any worse.

Last same week I was scheduled to perform with the Fairfax Symphony in their annual 'Kiddie' concerts presented for the 4th graders of Fairfax County Public Schools. The county school district is so large that even with busing the children to the 1935-seat GMU Performing Arts Center for the concerts, it took scheduling nine performances to get everybody in for the 50-minute show. That's a lot of 4th graders. The first day of 'Kiddie' concerts was on Tuesday of that particular week.

On Tuesday morning I woke up early to get ready for the mid-morning concerts. As soon as I put my glasses on, I KNEW something was terribly wrong. It looked as though someone had smeared vaseline on my lenses. I called my Mom and began crying uncontrollably. My greatest fear was that my retina had already detached and that it was too late to fix it. My Mom tried to calm me down and offered to take me back to my optometrist's office.

Once there, the doctor performed a standard eye exam and it seemed that all was well, until.....

Next: Red to Brown and the Great Gray Blob

My Horn, The Metal Taco

[Begin reading with Eyes in the Back of My Head]

In the spring of 1992, I traveled to Bloomington to audition for horn professors Michael Hatfield and Myron Bloom. I had every intention of studying with Michael Hatfield, primarily due to various warnings against studying with Mr. Bloom. One concern was that I might not hold up well to his favorite word - NOOOOO!!!

Mr. Bloom called me only days after the audition to say, "I want you to join my studio." I was surprised, thrilled, and terrified. I countered with, "I applied for an assistantship, who should I talk to about that?" "You talk to me." Wow. He really wanted me. He saw something special in me, perhaps something malleable and trainable. At any case, Mr. Bloom kindly waited until our 2nd lesson to elicit tears.

I certainly heard the word NO many times in the five years I studied with Bloom, but less frequently than my colleagues. If you've ever watched the movie, Hilary and Jackie, think of Hilary's flute lessons where she is working on the Badinerie from Bach's Orchestral Suite No.2. Her teacher stops her so frequently and yells at her so forcefully that by jury time, she is hardly able to take a breath and blow a steady stream of air. Watching this scene made me laugh uncontrollably, although I did tear up from the familiar feelings.

I learned so much from Myron Bloom during those years and can confidently say that I survived. No, I take that back. I thrived. Bloom helped me realize my potential and I am a better teacher for it. He also once told me that if I wasn't going to buy a horn which I had be trying out that he would. So I bought the horn. An Elkhart M-Series Conn 8D from 1967, original bell intact.

During those years, I also performed with the Owensboro Symphony and the Evansville Philharmonic. On one weekend, I was walking across the street from the hotel to the concert hall in Evansville to perform in a Saturday night concert. Somewhere near the curb, I tripped and fell. My hands went out front and my horn in it's "gig bag" - aka "dent bag" - swung over my shoulder and hit the sidewalk hard. I'm pretty sure that the heel of my shoe caught on the hem of my long skirt as suddenly my right leg just wasn't where it should have been for that next step. Someone helped me up, I brushed it off and continued into the concert hall.

The fall certainly hurt a great deal and through the tears, I asked for an ice pack and some aspirin. Unfortunately the stage manager had neither of these items, but did want to know exactly where I fell. Gotta think of those potential lawsuits I suppose. My colleagues took the gig bag from my hands, traveled across the back stage area in a huddle, unzipped the case and immediately closed it. My horn had been turned into The Metal Taco. The mute which had been placed in the bell for transport actually kept it from being much worse, but it was unplayable in it's condition.

One of the other players, Lorraine, called a student to ask her to bring her horn to the concert hall immediately. So that's the horn I used, with my hands hurting like crazy and my head pounding ferociously. It wasn't until Monday morning that I was able to go into the Student Health Center to make certain that my left wrist wasn't broken. It hurt that much. X-rays were taken and the doctor diagnosed a severe sprain. Wrap the wrist, take anti-inflammatories, and refrain from lifting heavy weights.

Now readers, I already know what you're thinking. Foreshadowing of MS - foot not in place? Maybe, maybe not. After a week my right wrist had improved greatly but my left wrist had not. In fact it felt even worse. Back to the Health Center, repeat x-rays, doctor's orders for PT. That night a nurse called me at home to say that the radiologist had taken a 2nd look at the films. I had a 'hairline' fracture just above the elbow. My fall had broken my arm. The PT appointments had already been canceled and doctor's orders changed.

For years since this teeny fracture, my left arm has been a barometer of sorts. I can't even remember the number of times I told my Mom that "my arm hurts." Her first thought was, "is it the same arm you broke?" Well. Yes, it was. So I ignored the intermittent pain for years thinking nothing of it, but OUCH. These days my left arm is still a barometer, but of a different kind. And this time it is MS.

Next: Looking through Vaseline-Covered Glasses

Tears on My Pillow

[Begin reading with Eyes in the Back of My Head]

One of the most striking features of IU-Bloomington is the beauty of the limestone buildings. On the left is Merrill Hall, one of six buildings on campus which house the Jacobs School of Music. Isn't it pretty at springtime?

During the same time I was dealing with the pain in my neck, I began experiencing weepiness, sleepiness, and fatigue. It got to such a point that I dragged myself into the Student Health Center. After talking it over, the doc suggested that I was sad from Seasonal Affective Disorder (SAD). I grew up in central Oklahoma where the sky is big, the sun is strong, the buildings are brick, and winter flowers bloom. Admittedly, those beautiful limestone structures were looking bleakly gray as they matched the constantly oppressive gray skies during those much too short days of late winter.

The doc thought that three months of a low dose of Zoloft would help carry me into springtime where colors and light flow freely. He also suggested that I could talk to someone in the Counseling/Psychological Services Division. That sounded like a good idea, especially since I was dealing with so much at one time.

Early in our visit, the psychologist expressed that she understood just how rigorous and competitive the doctoral music program is. She acknowledged that the level of sunlight could be affecting my mood, but she was more interested in the stress of academic life. When she suggested that the program might be more than I could or should put myself through.....well, I was p*ssed. She didn't know me and I lost any faith in her. I didn't return.

During the rest of my time in Bloomington, I cycled between toughing it out in silence and dragging myself into the Student Health Center to resort to a brief round of antidepressants to try to lift me out of the wet darkness. I think it was the third time I sought help that the doc suggested using the antidepressants for a full year in an attempt to level out the cycle which was being to look more like Major Depressive Disorder (MDD).

Looking through those Eyes in the Back of My Head, I'd be curious to know the level of Interleukin-6 (IL-6) protein in my blood at the time of that first depressive episode and at the time of each pulling riptide of darkness. We already know that inflammation plays a significant role in the development of multiple sclerosis, but I wasn't aware of its connection to depression until reading an article at BrainBlogger, Inflammatory Markers Altered in Depression and Suicide.

As recently as 2005, Johns Hopkins Researchers Discover Key Protein Linked To Transverse Myelitis and Multiple Sclerosis.

"IL-6 is a chemical messenger that cells of the immune system use to communicate with one another. One of the cell types injured by high levels of IL-6 includes oligodendrocytes, which help produce the protective myelin sheath coating around nerve cells. The findings offer one possible mechanism responsible for demyelinating disorders, such as TM and MS, and may aid in the development of effective therapies against these disorders, the researchers say."

So not only do Transverse Myelitis and Multiple Sclerosis patients have in common elevated levels of IL-6, they share that characteristic with non-suicidal MDD patients. We know that depression can be a symptom of MS and that MS patients experience depression at greater occurrence than the general population. But isn't it interesting that they have inflammation in common.

This is starting to make sense to me. But at the time, I thought it was a sign of personal strength the longer I went without breaking down and reaching for the antidepressants. I'm much wiser now.

Next: My Horn, The Metal Taco

A Pain in My Neck

[Begin reading with Eyes in the Back of My Head]

At the age of 23 (practically 24), I moved to Bloomington, Indiana, to begin work towards a Doctor of Music degree at Indiana University. If you've heard anything about the IU School of Music, then phrases like 'meat grinder', 'the factory', 'competitive' or 'cutthroat' come to mind. Now known as the Jacobs School of Music, it hosts more than 1600 students with about half being undergrads. Last year only about 20% of incoming freshmen who applied were accepted.

During my first visit home for Christmas break, my mother and I were driving home from a local mall are were rear-ended while at a stop. My head was turned as I was speaking with my Mom when the woman behind us hit the bumper while going about 5-10 mph. Not terribly fast, but fast enough to give me a good whiplash injury. I treated it conservatively at home and returned to school on schedule. However, I was having a hard time of it.

Back in Bloomington, I sought the expertise of a chiropractor who proceeded to do all the customary snaps, cracks, shocks, and massages. But relief was never sustainable. The pain did subside but I began having difficulty concentrating and experienced some vision problems. During the Christmas break, I had visited my opthamologist for the annual routine stuff and had received an updated prescription for contacts. I wondered if maybe the power were a little off.

So into the IU School of Optometry Eye Care Clinic I went. It's interesting when you go to a teaching facility for healthcare; often you will undergo duplicate testing for the benefit of clinical practice and opportunity for instruction. But I was the pro, having been indoctrinated to the eye care scene since the ripe age of four and blessed with coke-bottle glasses since adolescence. The warning given each year was to seek treatment immediately if new things developed, such as flashing lights, sudden blurriness, or unexplained changes in vision, as they can be signs of retinal detachment. Retinal thinning and the subsequent detachment are more common in folks as myopically-challenged as myself.

My actual visual acuity was fine; I passed the color tests; and the eyeball anatomy checked out fine. There was the issue though of the slightly larger appearance of my right pupil. Hmmm. Had that always been the case and I never noticed or was this something new? Off to find old pictures of myself to bring into so that the difference (if any) between my pupils could be measured at a previous point of time. Well, it was hard to tell and inconclusive at best.

What the optometry doctors/students determined was that my eyes were not focusing at the same rate which was causing my complaints. So they provided me with a visual device with which to 'exercise' my eyes in focusing and a pair of reading glasses to use when studying. Neither intervention helped and seemed to make matters worse.

I continued to have headaches, vision problems, and difficulty concentrating, all of which made pursuing academic endeavors rather challenging. Due to lack of improvements, or maybe even worsening of symptoms, the doctor wanted a radiologist to get a real good look of my intelligent brain. So during spring break in March, I took the doctor's order to the new MRI clinic in my hometown.

Turns out I did NOT have a tumor, but I also did NOT receive any answers behind the cause of my complaints. What I did get was a perfect picture of one contact lense on the eye which must not have flinched during the procedure. Pretty cool snapshot.

When the semester was over, I went home to Oklahoma and visited my father's chiropractor who took some x-rays and determined that my 'head was not on straight' - seriously that's what he said. He said that the previous chiropractor had made things worse by eliminating the natural curve in my cervical spine and leaving me with a substantial kink (my phraseology) at the base of the skull. I went to him during my summer break on a regular basis for treatment, primarily addressing the musculature of my neck, jaws, face, hips, and lower back. Did I forget to mention that this D.O. was thoroughly versed in the Rolfing Technique? Ouch!!! but by July, I was finally feeling and seeing much better.

So let's recap: stressful and competitive academic life, whiplash, vision problems, concentration problems, headaches, chiropractors, MRI, and no definitive answers.

To be continued...

Next: Tears on My Pillow

Eyes in the Back of My Head

We've all heard the phrase - "hindsight is 20/20" - but what does that really mean? Are events in the past truly crystal clear when we examine them from afar?

I've been thinking about the history of my personal multiple sclerosis journey. A neurologist officially upgraded me to Definite MS in October 2005. So is that where my journey began a mere 31 months ago?

I went completely blind in my right eye for two months in March-April 2000 due to Optic Neuritis, but with "no evidence of any demyelinating disease" according to the MRI report. Was that the beginning of the road?

Or maybe during the early years of my doctoral studies when I was having such headaches and vision issues. At that time, I made a number of visits to the Optometry School on campus and underwent several tests. But no visual fields or evoked potentials. I ended up with a new pair of reading glasses to use in connection with my contacts and a simple device to "exercise" the focusing ability of my eyes.

But these devices did not really help to resolve the headaches or occasional vision problems. So came my first encounter with an MRI machine, with the goal of eliminating a possible brain tumor. No brain tumor and no answers. That was over 15 years ago.

So far the picture is still blurry. Perhaps with more examination.

To be continued....

Next: A Pain in My Neck