Walk MS Update

It was a beautiful day and I had a great time running the MS info table. People could take quizzes about MS and if they got a perfect score, they received a string of orange beads. Aside from info, we had all sorts of MS schwag that folks could buy, like bracelets, magnets, etc. A good time was had by all!

I raised $1,160.00 this year. Next year, I am going to form a team and attempt to raise $5,000! I think I may walk next year, too.

I want to thank everyone who supported me. I know the funds raised will be put to great use for those of us in Oklahoma with MS.

I encourage everyone to participate in Walk or Bike MS in some way. If you can't walk, volunteer. If you can't volunteer, be a fundraiser or donate. Every dollar helps!

Peace,
Kelley

It's Walk MS Time!

Hi, kids! Sorry for my lengthy absence, but things have been incredibly busy. I had to conserve my compromised myelin for other things, so the blog suffered.

Anyway, spring has arrived and with it Walk MS events are cropping up all over the country. I am volunteering at my local walk next Saturday for the second year. If you would like to contribute to my fundraising efforts, please visit my personal Walk MS page.

For those of you in the MS community, I hope your walks are successful and put us closer to our goal of ending MS.

Peace,
Kelley

Merry Christmas, everyone!

Just a quick post to wish everyone who reads this blog, all of you in the MS online community and anyone else a Merry Christmas. May you have a blessed Christmas and a healthy and Happy New Year!

I am missing Midnight Mass for the first time in nearly 15 years, due to extremely inclement weather here in Oklahoma. We are actually under a blizzard warning, the first time in memory that this county has had a blizzard warning.

Fortunately, our household is snug, warm and has power. We have generators on standby in the event we have a power outage. The GH is always prepared! Only one of the many reasons I love him dearly.

During this holiday break (I don't go back to work until Jan. 4), I will catch everyone up on the events of the last 6+ months in my MS-ridden world. Just as a little hint, my MS is in total remission right now. Woohoo!

May you all have a blessed holiday season, from Casa F in Oklahoma!

Peace,
Kelley

It's My MS-iversary

One year ago today I received my "official" diagnosis of MS from a neurologist. What a year it's been! When I reminded GH about it today, he said, "Un-gratulations!" What a thoughtful GH!

In retrospect, it really hasn't been a bad year. I have been extremely fortunate, in that I have not had any exacerbations. Some minorly annoying symptoms, yes, but nothing too troublesome.

What have I learned from my first year of living with MS? A lot. I slow down and listen to my body when it speaks (at least most of the time). I have tried to make some lifestyle changes (made my Copaxone injection a part of my daily routine, tried to quit smoking, but have fallen off that wagon) and will hopefully make more, one babystep at a time. I have learned to be proactive and be my own advocate when dealing with my medical professionals and how to yell at insurance companies without cursing at them. I have learned to become part of the political process in a more active role than I have ever played before.

I have learned where to get reliable information about MS symptom management and support. The MS blogosphere is a fantastically informative and encouraging space. I have become active with my chapter of the National MS Society, having attended workshops and fundraising events and I fully intend to do more in the future.

I have learned that there are comfortable, stable and cute shoes for low prices. I am constantly reminded of how many people in my life care about me and want to help. I have also developed a deeper personal faith in God, who continues to smile upon me.

The main thing I have learned is just how incredibly blessed I am. Thank you all for helping me along this road less traveled. I could have curled up in the fetal position and stayed there for the last year, but with everyone's help and encouragement, I came out to play.

Peace,
Kelley

Sounding Off About Montel's Appearance on Oprah

I wanted to write this earlier, but I decided to wait until I had cooled off a bit. I was quite disappointed with the misinformation passed on during this show. I hope some of you brothers and sisters will join me in writing to Oprah to express our disappointment. That is, if you agree with my take on the show.

Although Montel's crying was touching and perhaps pulled at some heartstrings, somehow it felt very hollow to me. I felt his main purpose on Oprah was to sell his book. Which is fine. But do not try to sit there as if you are the spokesperson for everyone with MS. You do not speak for me! And you definitely do not speak for me if you are feeding the public incorrect information.

Case in point, Montel stated that there are 1.5 million people in America with MS who each suffer differently with the disease. Yes, everyone suffers different symptoms, but 1.5 million people? According to the National MS Society website:

In the United States today, there are approximately 400,000 people with multiple sclerosis (MS)—with 200 more people diagnosed every week. Worldwide, MS is thought to affect more than 2.5 million people.

Granted, these numbers are not the most reliable. There is legislation in the works to remedy this. However, I believe 1.5 million is a bit of an overestimate. OK, so the number of people in the U.S. with MS is questionable, but why am I so aggrevated? Read on.

Dr. Oz says suffocation caused by chest hugs is the leading cause of death for people with MS. Another leading cause? Suicide.

Excuse me? Suffocation?! Where did they get that figure? It is my understanding that only those with extremely advanced cases of MS die because the diaphragm does not cooperate. Way to scare the crap out of anyone watching who has been recently diagnosed! Oprah herself even said that Montel was battling a "life-threatening" illness. Uh, no. MS is not life-threatening. It is a chronic illness that must be managed, not beaten. At least that is what I need to believe right now to keep living. I was so outraged by the above statement that I had to do some research on my own. I feel vindicated, because I found that:

Very rarely [emphasis mine], there is a rapidly progressive course leading to death. MS itself is almost never the cause of death [again, emphasis mine]; death results from accompanying complications or infections. Generally speaking, the life expectancy of those with MS is at least 75 percent of normal. (from Life With MS)

Also, in the Journal of Neurology, Neurosurgery, and PsychiatryI found a study regarding survival and cause of death for MS patients. I could not get access to the entire article (I'm cheap), but the abstract had the following information:

Median observed survival time was 38.0 years from symptom onset. Mean age at death was 65.3 for women and 65.2 years for men. Mean age at death in patients dying from MS-related causes was 62.5 and 69.3 years (p<0.001) MS-related causes had a younger age at disease onset (32.5) compared with those dying of unrelated causes (36.8 years) (p = 0.01). Cause of death was related to MS in 57.9% and unrelated in 42.1% of individuals. In 27% of patients, "MS" was absent from the death certificate. The most common cause of death was respiratory disease (47.5%). The standardised mortality ratio was 2.79 (95% CI 2.44 to 3.18) so that MS patients were almost three times more likely to die prematurely relative to the general population.

I believe I am correct in assuming that yes, MS does shorten your life expectancy somewhat, but you are just as likely to die of heart attack, cancer, stroke, getting hit by a bus, as you are of dying from MS complications.

I only wish Oprah had an MS specialist or someone from the National MS Society on the show to educate the public on the real facts about MS. I also wish that the audience had seen other facets of MS, not just Montel's experience. The public should see a normal person with normal income trying to live with the disease. We don't have gyms in our homes or personal trainers. Many cannot afford the disease-modifying drugs that Montel feels are a "reminder" that he has a chronic disease. That "reminder" is a lifeline for me.

Is some MS education, even incorrect, better than none at all? Please post your thoughts.

Peace,
Kelley

Random Ramblings

The couples seminar in Arkansas was really eye-opening. It is part of the Relationship Matters course from the National Multiple Sclerosis Society. When we arrived at the hotel, GH and I were informed that we had won the random drawing for an upgrade, at no additional cost to us, to the Presidential Suite! Awesome! The suite had a sitting room, kitchen, bedroom, two bathrooms and a Jacuzzi. Wow! We had a nice relaxing time in the hot tub.

The seminar itself was to teach us about peaceful conflict resolution. At one point, the couples were divided into two rooms, those with MS and those who were the spouse. Of the ten or so couples, the female of each couple had MS and the males were the caregivers. Surprising. GH told me that the conversation in the spouse room could have been the script of a movie scene, in that these men really let down their guard and spoke of some very emotional subjects. My dad was even moved and he's usually the stoic one who makes wisecracks to lighten any emotion-laden situation.

Bottom line, if you can attend a workshop of this nature with your partner, I highly recommend it. Although GH and I have our disagreements, we learned that we communicate much more than the average couple. We also learned that our life is a picnic compared to others dealing with MS. But we already knew that, and we are so grateful that everything is okay right now and we are realistically prepared for whatever may come our way.

New subject. GH and I are throwing a joint birthday party for our dads this Saturday. His dad will be 90 on St. Patrick's Day and my dad turned 70 last Friday. We will probably have about 50 people through the course of the day. We spent last weekend shopping, cooking and housecleaning for the party. Although I took everything at a slow pace once we returned from shopping, I was grounded for about 48 hours afterwards. I didn't even do any of the heavy lifting, as GH dusted the ceilings and ceiling fans, shampooed the carpets and other difficult tasks while I went through some of my "piles" of stuff to reduce clutter. I woke up on Sunday fully intending to go to Mass, but my legs were heavy AND cramping, so I turned off the alarm and stayed in bed. The most productive thing I did was make a ton of spaghetti sauce for baked spaghetti while GH sliced the brisket he had smoked the day before.

I am happy to have this party, as I love both of these men dearly. GH's dad will probably move in with us in the next 6-12 months, although he is still very independent and still drives. However, he gets lonely, as he is still getting used to being a widower.

Here's the thing that really pisses me off about other people. Why are some people so selfish? A particular person in GH's family kept saying he wasn't sure if he would be able to come, as he has to work. We gave him a month's notice about this party! This is someone who we did not ask to help with the expense of the party, just show up to make GH's dad happy. That's all. It's only a four-hour drive. GH and I have gone to that town and back home in one day to fulfill family obligations before, so why can't he? And others in GH's family have not even bothered to reply to let us know if they will or will not show up. I find that incredibly rude. In short, they are all acting like a bunch of spoiled brats who can't part with any of their precious time to do something nice for someone who loves them dearly. I makes me so effing angry!

That's another issue. Pre-MS, I was always a very patient and tolerant person. Seriously. Now, my fuse is incredibly short and I have no tolerance for behavior like this. My question is, can this be the "MS personality" that I have heard/read about? I witnessed this to a much worse degree with my mom who eventually went into a horrid clinical depression. Or, am I just getting older and crochety? ;) Any comments are welcomed!

Peace,
Kelley

What's All the Fuss About Vitamin D?

After reading quite a bit about vitamin D deficiency in those of us with MS, I decided to ask for testing on my vitamin D levels at last week's physical.

The results are in! The "normal" or "healthy" measurement of Vitamin D is a number from 30 to 80. Mine was 9. Therefore, I will stop by the pharmacy on the way home from work to pick up my prescription-strength vitamin D pills. The doctor was not only concerned with the MS aspect of this, but also bone density issues.

The fact that I had to specifically request this screening really irks me. One would think that a medical professional would know that once a person is diagnosed with MS, the vitamin D levels should be screened. This is not news. Articles were published regarding this topic back in 1984.

Nonetheless, I encourage all of you dear readers to get your vitamin D levels screened at your next blood-letting. You are your best advocate!

On another note, all of my other test results were positive. With the exception of elevated LDL cholesterol levels. Not in a danger zone yet, but with my family history (both of my parents go to the same PCP as I do and both have high cholesterol) the doctor would like me to make a few dietary and lifestyle changes before we go the medication route. I read that giving up smoking could help in that area, too, so here's to one week of being smoke-free! Yay!

How many of you in the MS blogosphere have been tested, what were the results and are you on supplements? Inquiring minds want to know!

Peace,
Kelley

MS Weekend

GH and I are leaving this afternoon to travel to Fort Smith, AR. We are participating in a National MS Society workshop for couples dealing with multiple sclerosis, titled "Eight Hours to Lifetime of Relationship Satisfaction." Here is a link to the info.

I think this will be fun and informative. I even convinced my parents to join us there. Although it may be a little weird if the conversations turn to more intimate matters. ;)

On an unrelated note, I am on day three of my Lenten journey to stop smoking. I have not had a cigarette since Tuesday night and I have yet to kill anyone. I have been using nicotine gum to help with the cravings, but OMG, I have been eating everything that isn't nailed down! I did OK on Wednesday, because I was fasting Catholic-style (which means one full meal, two smaller meals and no snacking in-between). But yesterday? Frightening. Please send prayers, positive thoughts, whatever you subscribe to, for me during this test of willpower.

The thing that makes it most difficult is that GH is still smoking, although I hope he will quit soon. It would make things much easier!

I will post about the seminar upon my return. Have a great weekend, faithful readers!

Peace,
Kelley

Cold Day at the Casa

I cannot believe it, but the university canceled classes and closed the offices today. I'm really glad, because it is treacherously icy outside. Although GH had prepared everything in the event that we lost power like in the Great Ice Storm of 2007, we are happily powered here at Casa F.

I've spent the day cuddling with JJ and reading for my Mark Twain course. GH has been organizing all of our receipts for the accountant. He determined that our medical expenses went from approximately $2,100 in 2007 to over $8,000 in 2008. Damn you, MS!

Unless the road conditions deteriorate more, I have to be at work by noon tomorrow. Ah, another day of sleeping in! I didn't get up today until after 10:00. It was awesome!

I think the new drugs are working. I'll see my internist tomorrow and let him know everything is OK. Thanks for words of encouragement.

OK, I just updated on Facebook that I am getting on the treadmill, so I should really do that.

Peace,
Kelley

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

Six month followup

How did I get here? Start at So it begins...

So, I'm skipping ahead to the present. I'll fill in the gaps later.

I saw my neurologist yesterday and learned that I have NO active lesions and no new lesions! Woohoo! Copaxone seems to be working well for me. I had a gut feeling it would, since my mom has been on it for seven years without a relapse. Although I had some bothersome site injection reactions for the first four or five months, they have substantially subsided. I guess my body has become accustomed to the medication. Yay! The only new thing I will try is some medication to keep me from getting up at all hours of the night to pee. Sorry if this is a little TMI for you gentle readers. I know you other MSers get it. ;)

I've also started physical therapy for a problem I'm having with my left shoulder. I don't know how much is MS and how much is from a broken collarbone in 1995 (a great story I'll post some other time). It's probably a mixture of both. Anyway, the therapist gave me toys to take home to help me do my homework exercises. I am trying to stay away from pain or muscle relaxing medications. They make me stupid! If the pain gets to a point that I cannot tolerate, I will try medication. I am a firm believer in "better living through modern chemistry." I know that is almost contradictory, but that's me! ;)

Needless to say, the Goat-Hub (my wonderful husband who does a fabulous Goat-Boy impression) and I were very pleased with the news. Goat-Hub always goes with me to the doctor, in case I forget to bring up a point. However, we had made a list of symptoms, questions and issues I have experienced since my last appointment. Since my handwriting is atrocious, even before MS, I typed the list. The doctor was thrilled that I came so prepared and asked for a copy to put in my file. I try to be a good patient and proactove as much as possible. It is really nice when that is appreciated. I have heard so many horror stories about impatient and unsympathic physicians and I am so glad I have caring doctors.

So, I don't see the neurologist again for six months, unless I have a problem. Hopefully, I won't!

Peace,
Kelley