OK Senate Saves the Day!

Thank you, Oklahoma State Senate, for sustaining Gov. Henry's veto! Now I do not have to be embarrassed to say that I am from Oklahoma!

The Chambers of Commerce of both Oklahoma City and Tulsa lobbied for the veto, as well as the OK Chapter of NMSS and the Juvenile Diabetes Foundation.

I found out about this legislation last weekend at an MS seminar in OKC, hosted by the manufacturers of Copaxone. The speaker is the only listed MS specialist in OK, Dr. Gabriel Pardo, an ophtho-neurologist (see a video of him here). I'll write more about the seminar in a later post. Dr. Pardo urged all of us to contact our legislators to make sure this did not pass. So, it's his fault that my blood pressure went on a roller-coaster ride today!

I probably should get some of the work for which I'm paid done.

Peace,
Kelley

Letter to Oklahoma Legislators

I am beside myself about some legislation here in the state of Oklahoma. It is a ban on all embryonic stem cell research that makes it a criminal offense. Thankfully, the Governor vetoed the bill yesterday. However, the legislature is poised to try to override the veto. Bastards! (Yes, I equate them to the bastards who raised my Copaxone copay!)

Here is a letter I sent to my state senator and representative (and surprisingly, there was no cursing!):

Dear Senator/Represenatative,
I wish to encourage you to sustain Governor Henry’s veto of HB 1326 that makes embryonic stem cell research in Oklahoma a criminal offense. As a constituent in your district living with multiple sclerosis, stem cell research is critical in finding a cure to MS and other debilitating diseases such as Altzheimer’s, Parkinson’s, juvenile diabetes, rheumatoid arthritis and countless others.

The interpretation of this bill by many in the legislature has assumed inaccurate facts. There will be no use of stem cells from aborted fetuses. The National Institute of Health (NIH) has drawn the line saying the only stem cells used will be from discarded blastocysts left over from in-vitro fertilization treatments. These are cells developed in a petri dish and not implanted in a uterus. These cells cannot live unless implanted and will be discarded or frozen indefinitely at the expense of the donor.

Therefore, if these cells are to become medical waste, why not use them to help find a cure or treatment for thousands of Oklahomans with debilitating diseases?

The Oklahoma Medical Research Foundation supports language that would ban the use of tissues obtained from abortions, would ban the fertilization of a human egg solely for research purposes, and would ban so-called reproductive cloning (creating an identical clone of an individual). What OMRF believes should be permissible, but which this bill criminalizes, is to use embryonic cells created by in vitro fertilization.

If you believe that “no cures have ever come from embryonic stem cells,” you have been misled. Human embryonic stem cells were only discovered a little over ten years ago, which is far too short a time for a new treatment or cure to be developed.

This bill, if it becomes law, would also have severe economic impact on Oklahoma. It will make recruiting scientists more difficult, and it will make Oklahoma unattractive for biotechnology companies and investors.

If you override Governor Henry’s veto, this law would be the most far-reaching, restrictive, and in my view backward-looking in the country. I urge you to sustain the veto.

Respectfully,

Kelley F
My Address
OK
My Phone

I have never been what one could call a political activist, but this just really got under my skin. If you live in the state of Oklahoma and think this bill is ridiculous, please contact your legislators.

Yay, democracy!

Peace,
Kelley

P.S. Bad news. Hopefully the Senate will listen.

OK, Now It's "Real"

***WARNING*** There will be whining and complaining in this post.

I am down. And I am down for one of the stupidest reasons ever. I look frumpy. It has nothing to do with my weight, although I could stand to lose another 15 or so pounds. It’s my shoes.

The only shoes I want to wear right now are my white New Balance shoes. They are the only shoes I trust. Trust? Why should trust be considered? My New Balance shoes are the only shoes that provide me with stability and balance, no pun intended.

The only dress shoes I ever wear these days are some really cute black slingbacks with a nice stable heel. Pumps are out of the question. And I can only wear the dressy shoes for a few hours, not a whole day or my feet start cramping.

This is all due to MS. Oh, and my flat feet. I have wear inserts in most shoes to support these incredibly flat feet.

You know, I don’t think I ever got angry after my diagnosis. A little scared, sad and shocked, yes, but not angry. Perhaps this shoe issue has really made this “real” for me. I know I should be grateful that I have only a few minorly annoying MS symptoms with which I am dealing, and I am truly grateful for that. I have been living with this diagnosis for just over eleven months and it is just now hitting me. How random. I think I pushed down my emotions in order to reassure those around me that I am OK, especially my mom. I have always had a sneaking suspicion that she feels guilty, like it's her fault that I have MS, that she gave it to me or something. So I'm dealing with anger that is turning to sadness over SHOES! God, this is retarded.

It’s not like I was a fashionista, but I do clean up well. But now I have to resign myself to old-lady looking shoes. This sucks!

Any suggestions for finding non-frumpy footwear that gives the required stability for those of us with MS? I would greatly appreciate hearing about your experiences.

A Site You Should Check Out

I received this from Stuart. I hope you will check out his site. It is very useful; kind of a catch-all for all the latest MS news.



Whether an MS patient, a caregiver or a medical professional:
If you are not yet receiving the weekly MS e-Newsletter, titled "Stu's Views and MS Related News", or having access to our website and MS blog, then please consider registering after reading the information found below:

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MS Views and News
http://www.msviewsandnews.org
Our Mission: We are dedicated to the global collection and distribution
of current information concerning Multiple Sclerosis. In collaboration with
other organizations, MS Views and News uses state-of-the-art communication
channels to provide information for those affected by, or interested, in MS.
<><><><><><><><><><><><><><><><><><><><><><><><><>


Enter a place where information and knowledge is provided for anybody affected by Multiple Sclerosis. This includes the patients, caregivers, medical providers and/or anybody just interested in having availability to MS information.



On our website's homepage (http://www.msviewsandnews.org), you will find a link to register for our website and weekly publication of "Stu's Views and MS Related News", an MS e-Newsletter.



Other features of the MS Views and News website includes:

* Our MS Resources sections of many other Multiple Sclerosis organization weblinks and a video library.

* Find our articles from Ask the MS Nurse and Occupational Therapist. There is a learning .pdf on Achieving Wellness.

* Additionally, click the link found on the left side of homepage to view our Library of MS Archives (http://www.msviewsandrelatednews.com/blog5)



Important information is found within each sponsor Information Ad found on this site. Click each to view beneficial information.



A Must see is our MS BLOG (http://wwwmsviewsandrelatednews.blogspot.com/), where you will find easy-to-read MS articles. Thru this blog you will have access to many other MS informational resources and organizations as well as other MS bloggers. Find the category listings and other links found on the right side column of this blog to help you to better understand Multiple Sclerosis.





On the MS Views and News website, you will find MS Facts and information

in more than (11) different languages. (This is beneficial and much needed

for MS patients or family members/caregivers who don't read or fully

understand English, but need Multiple Sclerosis information).



Once you are registered, you will begin receiving our weekly MS e-Newsletter



MS Views and News, Inc., strives to keep the MS patient and caregiver,

informed and up-to-date with MS News and Information





If you have any information, questions or comments, please send an email to Stuart Schlossman (stuartschlossman@bellsouth.net)





As a Reminder:

I am not authorized to answer specific questions regarding medical diagnosis or treatment.

Should your inquiry deal with such specifics, you should contact a physician or other qualified healthcare provider. If your inquiry is of a more general nature, please feel free to contact me, by email.



Warm Regards, Stuart Schlossman




revised – February 2009

Walk MS

Spring has arrived and all over the country, MS chapters are holding their annual Walks. The Tulsa Walk is April 4. If I had more advance notice, I would have formed a team, etc. However, with short notice, I decided to volunteer (I'm not up to a long walk, although I am ambulatory); I think I'll be in the MS information tent.

I hope to meet some of the staff of the OK Chapter and get more info about becoming a peer for the newly diagnosed. GH and I also want to become active in a support group.

If you can spare a few bucks (even as little as $5), please help me in my fundraising efforts. You can donate directly via my personal page.

If you happen to be at the Tulsa Walk, please find me and say hello!

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

It's Awareness Week, Kids!

Please promote to your friends and family that this is National MS Awareness Week. Check your local chapter for events in your area this week. I would love to attend the OK Chapter "Storm the Capitol" day (my terminology), but I have to do that pesky work thing.

Since I'm probably too late to organize a Walk or Bike team for this year, I will focus my energy on next year. Don't be surprised if I hit you up for a donation!

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

Copaxone Drama

In my early thirties, I realized that my daily life was my own personal soap opera. When I had that epiphany, I vowed to keep drama onstage and remember that I cannot control everything. Since then, I have kept a majority of drama onstage, with a few exceptions.

Somewhere at the end of January, I received my monthly call from my specialty pharmacy to schedule delivery for my Copaxone. According to my understanding, after January 1, my copay would be $150 per month, with Shared Solutions paying $50 of that, leaving me with a balance of $100. Imagine my shock when the person on the other end of the phone line told me my total would be $500+!!! I calmly told her not to ship the Copaxone and hung up the phone. Needless to say, my blood pressure skyrocketed, and I was positive my head was about to explode. Mind you, I do not have any high blood pressure problems. I advised GH of the situation, lit a cigarette to calm my shaking hands to begin the marathon telephone session to multiple entities. (Dear readers, please do not comment about my smoking vice. I know it is unhealthy and I am making plans to quit for Lent.)

First call was to my health insurance company's pharmacy line. Everyone with whom I spoke was very polite and helpful. Problem number one: the specialty pharmacy is now considered out-of-network, therefore my Copaxone would cost $150 per month copay PLUS 20% of the actual cost of the medication. WTF? When I received notification of the new specialty drug changes in November, I called the insurance company and was assured that my current pharmacy had been purchased by a larger company that was in the network. There would not be a problem. Yeah, right. The gentlman gave me the number to the larger network pharmacy and wished me luck.

Call number two went to the health insurance company proper. I informed the very nice lady that I was misled and misinformed by their representative. She kept me on the phone for about 40 minutes, trying to resolve the issue. She apologized profusely, and stated that most of the problem was with the terms my employer had negotiated with the insurance company. She wished me the best of luck.

Third call was to Shared Solutions. As always, the people there were incredibly helpful and assured me that they would take care of transferring my prescription to the new pharmacy. However, said new pharmacy was not a participant in the Shared Solutions discount program, so I would have to pay the entire $150 copay each month. Fine, just get my drugs, already! Then she said she would forward my information to Chronic Disease Fund to see if I qualified for their Copaxone Assistance program. OK, sounds like a plan to me.

I finally calmed down. GH sat there in amazement, saying he couldn't believe I had handled all of that without yelling, screaming or cursing. He usually handles these types of situations, as he is a professional buyer for a school district and negotiates very well. However, in this instance, he stepped back and let me fight this battle. Although if I got overwhelmed, he was ready to jump into the fray with teeth bared.

The next day, I received a voicemail from Chronic Disease Fund. They e-mailed the requisite paperwork; I filled it out and faxed it back to them. A few days later, I was informed that I qualified for an emergency something-or-other and they would pay up to $2500 of the cost of my Copaxone for this shipment. Awesome!

Then the new specialty pharmacy called to set up delivery. By this time, I had approximately 7 days of Copaxone left. He set up the delivery and told me I did not need to pay anything! More awesomer! (Yes, I know that's grammatically incorrect, but I like making up new words, just like Stephen Colbert's "truthiness").

I received my Copaxone last week and did the happy dance. Then I received the multitude of forms from CDF to fill out for long-term Copaxone assistance. I sent them 18 faxed pages and crossed my fingers. However, I had a sneaking suspicion that our income level was too high to be helped on a long-term basis. I was correct in this assumption. I received a letter yesterday informing me that my application had been denied. Bummer!

Honestly, I wasn't terribly disappointed. There are so many people in the MS community who truly need this assistance. GH & I are blessed with employment, insurace and otherwise good health. We are not going to bitch too much about $150 per month. The results are priceless.

A New Name for My Blog

Now that I have been in the MS blogging community for awhile, I have decided to change the name. When I first started out, I wanted this to be my journal or journey, but once I started seeing other blogs, I loved the clever, sarcastic, witty and hysterical names people had for their MS blogs. I want a cool name, too!

After seeing the phrase "compromised myelin" on Trevis's blog, I fell in love with the name and thought it would suit my ramblings quite nicely.

Coming up in the next few days, some major updates on Skelaxin and insurace copays (Bastards!).

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

Who comes up with these drug names?

Skelaxin. What do you think this medication does? Is it something to prevent osteoporosis? No. Does it repair broken bones? No. Is it the newest character on Heroes who has the ability to shed skin and muscle to squeeze into tight places? No.

Skelaxin is a non-sedating muscle relaxer. My internist prescribed it for my ongoing shoulder problem. He also prescribed Meloxicam to reduce any inflammation that is present. Yet another weirdly-named drug. Meloxicam sounds like it should help with an upset stomach or a skin pigment condition.

Seriously, who comes up with the names for these drugs? I can't believe people actually get paid to come up with this!

I am glad my doctor is trying this method of treatment. I go back next week to see if these drugs are working. If not, we're going to assume this is an MS spasticity issue and possibly treat it with Baclofen. I hope it doesn't come to that.

To explain more about the shoulder, I received this injury in 1995 while in dress rehearsal for a charity musical revue. I was dancing in this number that was simulating the old-time fan dancers. We wore flesh-tone leotards and tights to give the illusion that we were nude while waving these lovely feather fans fore and aft to act like we were covering ourselves. Anyway, after the number was over, the lights went out and I started to descend the stairs of the platform where I had been dancing. Unfortunately, the stage manager had not put glo-tape on the stairs. As I went down the first step, the heel of my left character shoe broke off, throwing me off-balance. I pitched over the side and fell about five feet, landing on my left shoulder and thwacking my head quite smartly on the stage.

Long story longer, the lights came up and people rushed to me. A couple of doctors in the cast poked and prodded me and a firefighter (who was very cute; I was single then!) got an ice pack for me and someone volunteered to drive me to the ER. Someone got my bag for me and helped me on with some sweat pants (remember, I had on flesh-tone leotards and tights!) and a jacket to put over my shoulders. I went to the ER and determined if one more person poked my collarbone, I was going to punch them in the face. My brother met me at the ER and had me cracking up, although it hurt to laugh. He asked if I made a big thud when I fell. I told him it was actually very quiet. He said, "So, it was only a small splat!" Such a comedian!

Final verdict. I broke my left colloarbone. I still did the show, but not the dance numbers. I had something for the pain and went back to work. I healed eventually, but it was awkward because I am left-handed and I couldn't write or even wipe myself. Maybe it was good preparation for my flare last May when I couldn't use my left arm properly.

I have learned the valuable lesson that injuries one sustains in your twenties may come back to bite you in the ass in your forties. Or, MS spasticity really sucks. I don't know which is it for sure yet.

If it is determined that this is MS spasticity, I think I'll hold off on the Baclofen until the pain really gets persistently unbearable. Right now, it is minorly annoying (about a 2-3 on the pain scale. When it gets bad, it's about a 7-8. I can live with the 2-3 level on a daily basis, but not the 7-8. I would like to hear your stories of Baclofen experience or theatre injury stories!

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

A Pall of Sadness During the Holiday Joy

I am deeply saddened by some recent developments. My best friend's sister-in-law has been gravely ill with Acute Respiratory Distress Syndrome since before Thanksgiving. She has been in a drug-induced coma since then, but was expected to recover, albeit at a very slow pace. I just learned that the doctors have stated that the only thing keeping her alive now is the ventilator. The family is going to say goodbye, then take her off the machines.

I am so sad for the entire family. The woman is only 40 and has a husband and two pre-teen children. During my single years, I went to all of the family events, birthdays, holidays, etc. Since I've been married, I haven't attended as frequently, but still see everyone on a regular basis. We all went to high school together and played in band. Yes, we were all band geeks.

My best friend is a rock, and I am sure she will help everyone pull through this horrible, untimely death. However, I worry about her. To whom can she turn to express her grief? I hope she will let me be her rock. She is always so supportive of me. When I was going through my diagnostic process and the diagnosis itself, she was my rock. She offered quiet sympathy without drama, you know? She just took everything in stride and made light of the funny parts of it, especially the way I walked during my flare.

Dear readers, please send your positive energy, good thoughts or prayers (you choose) to this family in their time of loss.

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