Three Days of Weeping

Wow. What an emotional few days.

A friend at church passed away last Thursday. This was not unexpected, as she had breast cancer that had metasticized (sp?) to the brain. I was not sad for her, as I know she is in a better place and no longer suffering. I was sad for those left behind, especially her family and best friends, who are my dear friends in the choir.

Enduring Mass on Sunday was difficult, as I was there with my friends who were hurting so much, aside from the fact that we were singing a song that was so reminiscent of my choir at the parish where I was the choir director that I could barely make it through the song without crying. Then I went to the Rosary later that evening and that was SO sad.

On Monday, I had to sing with the choir at the Funeral Mass. I did OK for the most part, but the emotion of the day really hit me hard. I went home and did nothing for several hours but sit catatonically and watch completely mindless television.

Today, I called in "sick" to work to watch the inauguration. As contributors to the campaign and recipients of an invitation to the public events, I wept throughout the ceremonies. It has been all-inauguration all the time today, with the exception of one hour in which I watched American Idol. Needless to say, I wept again when President Obama and First Lady Michelle had their first dance at the Neighborhood Ball. Yeah, I'm a sap for good music combined with romance.

It is my fervent hope that the new administration will advocate for those of us with MS, as well as those who are under-insured.

God bless America!

When Is Pain MS-Related and When Is It Other Stuff?

I've been suffering with pain in my left shoulder for a couple of months. After the first week, I decided to seek some medical treatment, however, I did not want to take a medication that would make me drowsy or spacey, so I opted for chiropractic treatment. Then the chiropractor referred me to physical therapy. I was on board with that, since working through this and learning how to stretch and exercise to strengthen my upper back and other muscles seemed like the sensible thing to do.

After my last session before Christmas, my pain level went from about a two or three (mildly annoying) to a seven or eight. This lasted for about a week. I was not happy about this, and car travel to San Antonio and sleeping in a hotel room did not help the situation. The pain finally subsided a few days ago.

I went for my re-evaluation today and determined that I was not going to continue PT until I see my primary care doctor. If he deems that PT should continue, then I'll go forward with that.

Here's the one thing that really bothered me about the chiropractor referring me to that particular physical therrapy facility. I learned that the chiropractor is one of the owners of the PT facility. This walks a thin tightrope ethically, in my opinion. Yes, it is a brilliant business move, but I don't completely agree with it. As I stated earlier, if my PCP refers me to the same facility, I'm fine with that. It's a great facility that is very capable in dealing with MS patients. My therapist is always concerned about my fatigue level and makes sure I don't get overheated. He has also given me exercises to do at home for other issues like balance that are not related to the shoulder.

One of the frustrating aspects of having MS is determining if things that are going on with your body are MS symprtoms or if it is something unrelated. This thing with my shoulder could be arthritis from a broken collarbone received in a 1995 theatre accident. I'll save that story for another time. Another possibility is MS spasticity.

My question for you MSers out there is, how do you determine what is MS-related and what is other stuff? And can you ever receive a definitive answer? I know that's probably making you laugh, since MS is so unpredictable. Enjoy your laugh!

Peace,
Kelley

It's a New Year! And a New Copay! Bastards!

Thanks, health insurance company. Because I take a specialty drug, I now must pay $150/month copay for my Copaxone, as opposed to the 2008 copay of $50/month. Bastards!

I knew this was coming in November and have adjusted the budget with GH accordingly, as well as counting this new expense in re-figuring my flexible spending account for 2009 health care reimbursements. When I received the lovely package outlining our new options for 2009, I really nearly started screaming at someone. There was a separate brochure, all pretty and shiny, outlining the drugs considered "specialty" drugs. Before this list, there was a paragraph explaining why these drugs are so expensive. And, I kid you not, the first sentence says something to the effect of, "injectible drugs that treat conditions like multiple sclerosis." I was feeling a bit persecuted. Bastards!

I contacted Shared Solutions and they sent the paperwork to enroll in their discount program. I was accepted, so they will pay $50 of my copay. So now, my copay for 2009 is only double what I paid in 2008. Bastards!

All bitching aside, I am grateful that I have the income to pay for Copaxone. But what about those who can't? I know there are other programs for which they may qualify, but how do they find out about them? Since I began my MS journey, so many people have told me that you must be proactive about your health care. It is so true!

To all my dear readers, may you have a very healthy and happy 2009!

Peace,
Kelley

A Timely Vacation

We just returned from a little sojourn to San Antonio to see GH's family. We traveled by car since gas prices have dropped so much (paid $1.32/gallon when we left), so I got a lot of pleasure reading done on the lengthy drive.

GH's cousin was in TX visiting his daughter & son-in-law. His ex-wife lives a few doors down; they are on very good terms, a very amicable divorce. Anyway, Diana is in her 60s and has been living with MS for about 40 years. In GH's Jewish culture, the timeliness of this visit is what is known as bashert, or loosely translated, "destiny."

Although I already have an example of living with MS very close to me (hi, Mom!), I always find it refreshing to meet and know others with MS who live the way I hope to live. Diana is a very vivacious person who truly lives her life to the fullest. We talked openly about MS, and she noted how much better I looked this year, as compared to last year. Mind you, last year I had not been diagnosed or had any indication that I had MS.

Anyway, I truly enjoyed spending time with Diana and the rest of the family. This was a great example of how to model my life. Take care of myself, conserve my energy when I can, and enjoy the people I love having in my life. Also, don't be afraid to ask for assistance! Diana uses a cane to walk; she also has a wheelchair for longer adventures (like the Riverwalk!), but she told me she uses her wheelchair more like a walker and loads her stuff on the seat. How's that for energy conservation?

This restful vacation has inspired me to make sure I prioritize the important things in my life so I can fully enjoy them! When I grow up, I want to be like Diana! ;)

Peace,
Kelley

Cognitive Triumph

On Tuesday, I received a letter from the university where I work. This letter was from the head of the English department, my major. I was informed that the entire English department faculty had met earlier in the fall to vote on scholarships for English majors. I was awarded a scholarship that is given to the "best" students in the English department.

Well, I was a bit floored. You see, I decided to take advantage of my employee benefit of free tuition beginning in January of 2005 and decided to go back to school for an English major. Since so many of the credits from my other collegiate life transferred, all I had to take were major courses. So I've been chipping away, one course a semester, since that is the only way I can pursue this degree, working full=time and staying married, LOL!

I called the English department the next day to see what this scholarship entailed; I was hopeful that I could get some cash to buy my books for next semester. I was told to call the Financial Aid office. They told me that this particular scholarship is for tuition only and will be applied to my tuition before my employee tuition benefit kicks in. Oh, well. At least I was recognized for my abilities. That really means a lot, especially since my MS diagnosis. It's really nice to know that I can compete intellectually with students half my age, literally.

On a completely different note, I read about an interesting clinical trial that combines Copaxone and estriol. It looked like a no-brainer, win/win to me. You either receive Copaxone and estriol or Copaxone and placebo. I contacted the closest facility conducting the trial via phone and e-mail. Unfortunately, I do not qualify since I am already taking Copaxone. Bummer! :( At least I tried!

Anyone out there involved in this trial? It sounds really exciting!

Peace,
Kelley

I'm So Tired of Fatigue!

I know my fatigue is not as awful as many of my MS family, but I really hate the mind-numbing effect is has on my brain. Seriously. I have to take usually one day a month to stay home and do NOTHING all day. And I mean NOTHING. Getting out of my recliner to pee or eat is a chore. I don't even watch anything enlightening on TV, just daytime crap. Although, a paternity results show on Maury can be entertaining in a demented way.

Here's the other thing I hate about the fatigue. People who don't have MS don't get it. They will say something like, "Oh yeah, I get so tired, too!" The only non-MS person who doesn't piss me off with those statements is my friend who has nine kids and has a business out of her home. Just thinking about trying to live a day of her life makes me tired!

Do others have a difficult time describing their fatigue to people, especially their partner?

Ob-La-Di, Ob-La-Da...

...life goes on, bra. Missed the first parts? Go to So it begins...

After the diagnosis, GH & I prepared for our trip to NYC to celebrate our tenth wedding anniversary. I did call my family and close friends who had been following the saga to let them know I had received the diagnosis.

I was really afraid to tell my mom, because I knew she would blame herself and feel guilty. However, she surprised me by saying, "How do you feel about this?" That is SO unlike my mom. I think her therapy sessions have helped her to be more introspective. I did ask my dad later if she fell apart, and he assured me that she was OK. So with that bit completed, we packed and went to NYC.

I won't bore you with the details of our trip, but GH was very OK with me saying that I was tired and we needed to go to our apartment and rest for awhile. This was our fifth or sixth trip to NYC, so we didn't need to do all thte touristy crap. We spent our time exploring places we had not seen before, as well as hanging out at some of our favorite places. We only (!!) saw six shows in the ten days, which is a record low for us.

I think the two things of which I am most proud was that I walked across the Brooklyn Bridge and spent an entire day at the Bronx Zoo. The only real difficulty I had was our last two days, when it got extremely hot and humid. But we survived.

Once we came home, I had to set up an appointment with a nurse to come to my house to teach me how to inject my Copaxone. That was a great meeting! The nurse was so upbeat, but not in the annoying, perky, cheerleader fashion. She was a real, humorous, down-to-earth person who also has MS and she is still living her life to the fullest. I wholeheartedly believe that she was sent to me by a higher power to show me that I, too, can live my life to the fullest.

Another accomplishment post-diagnosis is that I starred in a production of Same Time, Next Year, which is a role I have dreamed about for years. Despite a bad review from an asshat critic (he commented that it appeared that I was rolling my eyes at the audience, allegedly breaking the fourth wall; I wrote to inform him that the "eye rolloing" was due to optic nerve hypoplasia and not an acting choice, for which I received an apology), I was so pleased that I was able to memorize half a play (it's a two-person show), dismissing any fears I had about cognitive dysfunction.

I have also received a title change at my job, which was long overdue. This reclassification moved me from an hourly employee to a salaried employee with four weeks of vacation and a 15% salary increase. Others in my department who hold this title of Project Coordinator do no more than I was doing at the lower ranking, so I stood up on my hind legs (an Oklahoma or Southern expression) and requested equal treatment. I did inform my supervisor about my diagnosis; we have worked together for nearly seven years and he was very concerned. However, I still have not informed Human Resources. I am not going to do that until absolutely necessary; things can be SO political in a university setting.

Long story short, I have tried to continue with my "abnormal" life as well as I can. I am fortunate, in that I do not have MS symptoms that are more than merely annoying. The left arm and leg have retuned to normal and I saw an ophthalmologist about my eyes. He (an old high school friend) assured me that there was no damage due to my exacerbation and now he has a solid baseline to compare if I do have problems in the future.

I have taken my Copaxone faithfully everyday, with the help of GH "shooting" me in those locations I cannot reach. I have lost about 20 lbs. since January and I am working to lose 10-20 more. I am going to physical therapy for a shoulder problem (old theatre injury) and trying to exercise a bit every day.

To see my progress, go to Six Month Followup.

It's Official!

Missed the first parts of the story? Start at So it begins...

May 28, 2008. A day that will live in my personal infamy. I went to the neurologist with GH. By this date (remember, this all started on May 9, 2008), I had regained a great deal of my functionality on my left side and the vertigo was gone. I felt well, although apprehensive about this appointment. I was also excited, because GH and I were leaving the next day to go to New York City on vacation to celebrate our tenth wedding anniversary. We financed the trip by colloecting from all those who bet we wouldn't last ten years. ;)

The doctor enters the examination room, introduces himself and then asks me, "What did your doctor tell you?" I repeated exactly what the nurse had said, that the MRI was indicative of multiple sclerosis. He affirmed that this was correct and proceeded to show me the MRI photos. The lesions were lighting up like a Christmas tree. Even my untrained and defective eyes could see this. Speaking of my interesting eyes, the neuro was totally fascinated by my eyes. I guess it's not often doctors get to see someone like me. I mean, I think my optic nerves have appeared in medical textbooks. Shouldn't I get some royalties for that?

Anyway, I was put through a battery of neurological coordination tests. The results were not nearly as horrid as the one in the urgent care facility, but there were still deficiencies on my left side. The doctor was also concerned about my left eye (that's the REALLY bad one). He thought the pupil was not as reactive as it should be. This concerned me quite a bit, so I made a mental note to make an appointment with an ophthomologist when I returned from NYC. That is one thing I do not mess around with or procrastinate about. Although optic nerve hypoplasia is not a degenerative condition, I always am very proactive about my eye care. That was the most upsetting part of the appointment.

The rest of it was just discussing disease-modifying treatment and any questions I had. The doctor suggested Copaxone, and since my mother had been on that medication for about seven years without a relapse, I wholeheartedly agreed. He assured me that they would make the arrangements and I would start after I returned from the trip.

There was a humorous moment during the appointment. The neuro was very positive in assuring me that I could still have children. He was all, "You're still young enough; MS will not keep you from having a baby." I was cracking up, because GH and I had decided early in our marriage that we were not going to have kids. I was trying to explain this to him, but he didn't get it at first. So I had to break it down. "Listen, GH is 23 years older than me. He has three grown kids and two grandchildren. We would have to go to extraordinary measure like IVF to conceive and we did not want to go that route." Then he backed off. I mean, I thought it was nice that he was concerned, but enough already!

So, there it was. I had my official diagnosis. Wow. Actually, I should say we had our diagnosis, because GH was there every step of the way, even knowing my greatest fears before I articulated them.

Of course, we had an obligation that night. GH was in rehearsal for The Chosen and I was stage manager. Before we went to rehearsal, we shed some tears in the car. Then during rehearsal, the guy who was best man in our wedding (who was also in the show) had this scene that is just heartbreaking to see. I just wept throughout that whole scene. It was very cathartic for me.

We went home afterward, packed the last bit of luggage, went to bed and prepared for our trip.

Tune in next time for Ob-La-Di, Ob-La-Da...

The Dreaded Phone Call

Missed the first parts of the story? Go to So it begins...

After the MRI, I tried to put it out of my mind. I went back to work for half-days, because that was about all I could sit up for an extended period of time. So, on Thursday, May 22, 2008, I was hanging out at my father-in-law's duplex, resting after my half-day of work. He lives in what's known as midtown, which is closer to my office than going all the way home in the suburbs.

I guess I should explain. I don't drive. I learned how to drive in the event of an extreme emergnecy, but I do not have a driver's license. I am, shall we say, visually challenged. I have a condition known as optic nerve hypoplasia (ONH), which means my optic nerves are only a half to a thrid the size of normal optic nerves. Like MS, no one knows what causes it. I have had this condition since birth, so I have no idea what "normal" vision is like. I can do nearly anything except drive and read an old-fashioned thermometer. Anyway, I digress.

While I was resting at FIL's, I received a call on my cell phone. I went outside to take the call. The nurse from my family doctor's office said, "Mrs. F, I have your MRI results. The test is indicative of multiple sclerosis." She said it in a very matter-of-fact tone, without apology. Believe it or not, I was glad she didn't say, "I'm sorry." I thanked her for letting me know and hung up. While outside, I decided I needed a cigarette (wouldn't you, even if you don't smoke?) and absorb the news. I wasn't freaked out, surprisingly. I think, somewhere in my conscious or subconscious, I knew MS was a possibility.

I went back inside and waited for GH (Goat-Hub) to pick me up. I think I called to see when he would be there. I could have sworn I said, "I heard from the doctor's office." Anyway, when he got there, he exchanged news of the day with his dad and then we went home. I had another performance of Midsummer Night's Dream that night. As we were driving home, GH kept talking on and on about inane things that occurred during his work day. I had no idea what he was saying, he could have been speaking in Russian for all I knew.

At some point, I said, "Honey, did you hear me say when I called you that I heard from the doctor's office?" He said, "No! I didn't hear you say that! What did they say?!" So I repeated what the nurse had said. He was like, "Well, we knew that was a possibility." To which I replied, "At least it's not a brain tumor, right? This is something that is manageable. This will not kill me. OK, let's not tell anyone except family until I see the neurologist, OK?" He agreed.

We got home, greeted the fuzz muffins (Janis Joplin F, a.k.a. JJ and Johnny Cash F, a.k.a. Cash; yes, we name our dogs after dead singers) and I called my mom with instructions to keep it quiet for now. Then I started to put on my makeup for the show. Although I still couldn't use my left hand, I could still apply stage makeup with my right.

I went to the theater, going through the routine of getting ready. I'm sure I was more quiet than usual, but I bet everyone attributed it to me not feeling well. I did what I was supposed to do and went home immediately after the show. During the times I had some quiet space around me during that performance, all I could hear in my head was, "MS, MS, MS, MS...The MRI is indicative of multiple sclerosis." It was like a broken record playing over and over and over.

This was right before Memorial Day weekend, of course. Why can't I ever have a medical problem during regular business hours? My mission for Tuesday when I returned to work was to call the neurologist's office and see if they could schedule me any earlier than July. I told the receptionist about my MRI results and that I would really like to get an official diagnosis as soon as possible. She said she would let me know if anything became available. She called back later that afternoon to tell me that an appointment became open for the next day. I said, "Great! I leave for New York the following morning, so this fits perfectly."

Tune in next time for It's Official (and Happy Anniversary, by the way)!

The MRI of DOOM

Go to the start of my story: So it begins

Don't think I'm a pessimist due to the title of this post. I stole it from the House recaps at Television Without Pity. Bad stuff ALWAYS happens on House when the Patient of the Week has an MRI.

I went to the second MRI of my life on May 19, 2008. I had the first one in 2002 when I was experiencing numbness and tingling in my right arm. That MRI showed no abnormalities. I still felt pretty crappy, but the vertigo had subsided somewhat and I was no longer nauseated.

I arrived at the hospital and did all of the registration stuff. Once I was lying on the table/slide before entering the MRI of DOOM, the tech asked what music I would like to hear. I wasn't aware that they now offered CDs. Being the music lover I am, I asked for some Aretha Franklin. Of course, they didn't have that. So I blanked out and just said the first thing that came to mind, "OK, got any Beatles?" They did! So I slid into the tube and assumed the most comfortable position for lying motionless. Then the most effed up versions of Beatles songs began to play. I assumed they put on some compilation CD that had unreleased studio recordings or some such. Dudes, I have never taken acid in my life, but after the experience of listening to that weird stuff while in the MRI of DOOM, I think I have vicariously. That was messed up!

When I expected the nice technician to say that I was done, she fooled me. She said, "We're going to bring you out and inject some contrast dye." Uh-oh. That doesn't sound good. I start freaking out a little inside my head; this was around the same time that Ted Kennedy was diagnosed with a brain tumor. OMG, OMG, OMG! Long story short, I got shot up with contrast dye and endured another round of pictures with the bizarre Beatles music in my ears.

When it was all over, I had to just sit for awhile before my head felt like I could walk again. You don't realize how dizzy you can get from lying flat and motionless for a long time. Anyway, I finally left and found GH (the Goat-Hub) and related the experience to him. We made jokes and went along our merry way, awaiting the results.

Next, The Dreaded Phone Call

Fast Forward to May 2008

Want to start at the beginning? Go to So It Begins...

I woke up on the morning of May 9, 2008 with a headache, so I called in sick to work and went back to bed to see if sleep would help. When I woke up, I started to walk to the bathroom, I felt like I had consumed copious amounts of alcohol! What the hell?! Everything was spinning and I was completely off-balance. I went back to bed for awhile, then decided I should do something productive, so I attempted to vacuum the living room. Two platinum-blond Cairn Terriers can make a mess of a burgundy carpet!

I think I tripped and hit my left foot on the vacuum cleaner about 10 times during that exercise in futility. I tried to eat something, but it didn't stay down long. I found some flat ginger ale and laid back down until the hubby got home.

He didn't believe I felt as horribly as I did. He thought I was exaggerating my illness to procrastinate the much-needed housework. BTW, housework is the largest bone of contention in our marriage. Hubby is a tidy person and I am not as particular. The biggest arguments we've had in our eleven years together are about the division of housework duties. Truly, if that's the worst thing we fight about, I think we have a pretty solid marriage!

At one point when I got up to go to the bathroom, he noticed the uneveness in gait. He said, "Walk to me." So I did. I kept leaning to the right, since my left leg was not responding properly. He then said, "Seriously. Quit screwing around." To which I replied, "Honey, really, I'm doing the best I can." Finally, he realized that I wasn't exaggerating, he went into caretaker mode, making sure I was OK and trying to find something that I could eat.

By the next morning, I was still miserable. The only position I could manage was lying down. Anything else made my head spin. I asked him to take me to the urgent care facility close to our home. Of course, this wouldn't happen during the week when I could see my regular doctor. So we went. I was pathetically miserable riding in the car and I couldn't fill out the forms; he had to write everything for me. I did manage to sign my name. When he saw my signature, he said, "You know, your writing looked really weird last week when we signed that rental agreement with our new tenant at the duplex." I replied, "Yeah," because that was all I could manage right then.

The doctor I saw looked like she was about 14. I almost called her Doogie Howser. ;) I mean, seriously, how much confidence can you have in a physician who wears a midriff-baring shirt to work? Although, honestly, at that point, I didn't care. Just give me something for the nausea. She made me do that neurological test that resembles the sobriety test. C'mon, you know the one, "Close your eyes and touch your index finger to your nose." Well, I could do that fine with the right hand, but I was missing wildly with the left. The sad part of that is that I am left-handed! Doogie was quite freaked by this. She insisted that I get an MRI first thing on Monday. She also prescribed some Meclazine for the nausea, which is the main symptom I wanted to control. I was really afraid I would get dehydrated if I couldn't keep anything down. The diagnosis she gave me was vertigo, which is what my brilliant powers of deduction had assumed, although I had never had vertigo before.

I went home and called my mom to let her know that we had to cancel the Mother's Day lunch we had planned. I was going to make a fabulous prime rib dinner with all sorts of wonderful side dishes. She was very understanding and told me to just get better. Since we already had the prime rib defrosted, hubby decided to cook it the next day. I got up long enough to eat about ten bites of the meal before I had to lie down again.

In the midst of all this, I had to call in sick to the first rehearsal in the theater space for Midsummer Night's Dream. I was playing Hippolyta; it was my first Shakespearean role! The stage manager was very sympathetic and told me to get better and hopefully be at rehearsal on Monday.

On Monday, I saw my regular primary care physician. He was pretty concerned at my situation, so he ordered an MRI and set up an appointment with a neurologist. He gave me some vestibular exercises to help redistribute the fluid in my head, hopefully curing the vertigo. I started doing the exercises 2-3 times a day and it seemed to help. I stayed home from work until Thursday, although I was going to rehearsals at night. The show was to open on Saturday!

I managed to make it through the first weekend of the show with help from many people. The director's mom did my hair, as I still did not have full use of my left hand. She also helped dress me. Other cast members helped me on and offstage, as well as up and down the stairs on the set. By the end of the week, I was feeling better and returned to work on Monday.

The MRI experience really deserves a post all its own. 'Til next time!

Next, The MRI of DOOM