"Suzy's Cells are Better Than My Cells! No Fair!"

According to this CNN Medical Blog Post (which, inexplicably, is credited to the very famous Dr. Sanjay Gupta but is authored by a producer), a new study has found that there are two kinds of MS:

1. One type that is caused by gamma-interferon-secreting T cells
2. Another type caused by IL-17-secreting T cells

The study Dr. Gupta's ghost writer/colleague is writing about is from the Stanford University School of Medicine. Researchers examined the effectiveness of a beta-interferon treatment regime. Apparently, the two types of MS respond to the treatment differently in both mice and humans. (How did they give MS to the mice, I wonder? Or is that a stupid question?)  It stands to reason that, if you are undergoing (or considering) this kind of treatment, doctors should know what kind of MS you have so you aren't doing self injections with just for fun with no hope of slowing the disease. Unfortunately, they have yet to develop a simple blood test to determine which type each of us has, but the National MS Society is excited about the possibilities that this study presents.

Nature Medicine produced an incredibly boring video where the Stanford University doctor in charge of the study describes the research results in incredibly boring detail:



But what about the rest of us who are getting different kinds of treatments? Not to sound completely self involved but, does this new information mean anything for MSers who are taking something other than beta-interferon? Does anyone know of similar studies that compare cellular differences between patients taking other therapies? Or, are neurologists just rolling the dice when they prescribe drugs for us, hopefully not taking into consideration the really posh pharmaceutical company lunches and the hefty speaking fees?

What do you think?

Hit Me With Your Best Shot!

I've now been on daily injections of Copaxone for two weeks and I've figured out how not to give myself painful bruises.

1. Pick an injection site you haven't used in a week (e.g., back of arm, thigh, butt, or belly).
2. Place a warm pack on the injection site for about a minute.  
3. Swab with alcohol and administer the shot. 
4. Apply an ice pack on the injection site for about 5 minutes.

 Voila! No pain and no bruise. This is huge for a wimpy, vain woman like myself who doesn't want to look like a domestic violence victim when wearing a bathing suit in Myrtle Beach next month.

Thanks for letting me share.

Another Cure!

I had a lovely phone conversation with my cousin today. I love my cousin Karen. She is only a year younger than me and our mothers are cousins and pretty close. Although we grew up near each other some of the time when we were kids, we weren't very close until we reached adulthood and both lived with my grandfather in Lake Tahoe for a summer. We had a blast and since then we've faded in and out of each other's lives but always fall back into our comfortable relationship when we come together again. She's now living on the Cape and the kids and I are going down to spend Easter with her and her family. I can't wait.

Karen is not someone who pities me, ever, which I really, really appreciate. She did, however, tell me today that her husband had found and saved an article about a cure for MS and she wanted me to call him right away to have him give me all the details.

Karen is a very bright woman. She is a talented painter, a great mom, and has business savvy, too, having partnered with her husband to run a successful restaurant in Hawaii and several World's Fair concession operations around the world.

Does she really think that there has been a cure for MS that has come in "under the wire" and that I would not have heard anything about it if her husband did not happen upon this article?

I know...I'm being harsh and probably less than grateful for Karen's obvious interest in my well-being. But I wonder: Is it just me? Does anyone else get a little edgy when well-meaning friends and family pass along "cures" and new treatments? Are any of my fellow MSers not regularly reading the news and various MS publications and websites in the hopes of hearing promising research results? If we see a neurologist at an MS Center or other research hospital, don't we read all the magazines and flyers in their waiting rooms? For those of us who are fortunate enough to have health insurance, don't we go to those offices every six months in the hopes of hearing the latest news and information about how to treat and even cure our MS?  How many of us particuapting in National MS Society events to raise money to find a cure and then we get on their mailing lists to read still more research results?

Is it just me?

It Is Law

And so, with the stroke of 21 pens, President Obama has signed the Health Care Reform Bill into law.It is what it is: An imperfect beginning, but a beginning all the same. It's a time for celebration, not an opportunity for bitterness or bipartisanship. 

If, like me, you aren't happy with some of what has been left out of the bill, I hope you will join me in working still harder to pass additional legislation to ensure that the wealthiest nation in the world provides the very best health care for all our citizens, regardless of their ability to pay or their current health status. When the U.S. Constitution  was adopted in 1787, women and people of color did not have the equal rights to freedom and a voice in the voting booth. Twenty-seven amendments had to be passed to get the nation's most important governing document to where it is now.

If, however, you are in the very noisy and annoying minority that is pissed off because the bill included things you wish were not there, tough sh#%.

Health Care Reform Reaction

I feel like a little kid who asked Santa to bring him a pony for Christmas. As the holiday approached, my parents told me that a pony was out of the question but I still hoped for a pet of some kind. Long about December, I was pretty sure it was not going to be a cat or a dog either, but I started feeling pretty good about a bunny....or a hamster, maybe...? Then, by Christmas Eve I had lowered my expectations so I would be happy with any gift at all. On Christmas morning, I found a goldfish in a bowl under the tree and I was thrilled, almost forgetting that I started out wishing for a pony.

So, I wanted a public health care plan for all Americans. I wanted the wealthiest nation in the world to move our citizens' health up on the priority list. Partisan politics, misinformation, and deep-pocket lobbyists have changed all that. But we do have a bill that the President is expected to sign into law tomorrow.  I've decided to focus on the positive and tell you what I do like about the health care bill...or at least what I think is an improvement over what we have now. Here are a few of the Bill's benefits (compliments of The Huffington Post with my commentary added in):

• Health Insurers cannot deny children health insurance because of pre-existing conditions. Adults will have to wait until 2014. If you have MS and your don't currently have insurance, plan to leave your job (or lose your job), and/or live outside Massachusetts where insurers can't discriminate against you for having a diagnosed disease, best of luck to you.
• A temporary high-risk pool will be set up to cover adults with pre-existing conditions. Health care exchanges will eliminate the program in 2014. So...does this mean that the MSers I mentioned above are not in danger? And is this pool open to everyone?
• Seniors will get a rebate to fill the so-called "donut hole" in Medicare drug coverage, which severely limits prescription medication coverage expenditures over $2,700. As of next year, 50 percent of the donut hole will be filled. Again, is this enough? Will poor senior citizens be able to pay even half of the very expensive cost of drugs that go beyond the $2,700? Is there anything in this bill that will control the cost of these very expensive drugs?
• The cut-off age for young adults to continue to be covered by their parents' health insurance rises to the age 27. Hopefully, the economy will continue to improve and these 20 somethings will get jobs that will provide health insurance or they will make enough money to choose a plan of their own. Just a reminder: Most people are diagnosed with MS between the ages of 20 and 50.
• Lifetime caps on the amount of insurance an individual can have will be banned. Annual caps will be limited, and banned in 2014. I hope those of us with MS and other diseases that are pretty pricey to diagnose and treat, don't reach their caps by then.
• New plans must cover checkups and other preventative care without co-pays. All plans will be affected by 2018.  What constitutes a "new plan." On the surface, I love this feature. I just wish it could take effect before 2018.
• Insurance companies can no longer cut someone when he or she gets sick. Although the final bill is missing a lot of features that I wanted, it had to have an end to recissions, the absolutely evil, unethical, but currently legal practice of reviewing old insurance and medical forms of sick people to find missing or contradictory information in order to cut them off.
• Insurers must now reveal how much money is spent on overhead. This is great but exactly what is the average patient/consumer supposed to do with this information? I suppose we could decide not to go with that particular insurance company but what happens if your employer only offers one health insurance option?
• Any new plan must now implement an appeals process for coverage determinations and claims. This one surprised me. Don't they all have appeals processes in place now???
• A ten percent tax on indoor tanning services. This tax, which replaced the proposed tax on cosmetic surgery, would be effective for services on or after July 1, 2010. This one seems like a good idea. I'm assuming it's like the tax on cigarettes that makes people pay for choosing to engage in unsafe behaviors. I just hope they provide information about why tanning is bad for you and safe alternatives (e.g., spray tanning).
• Medicare payment protections will be extended to small rural hospitals and other health care facilities that have a small number of Medicare patients. Does this mean that medicare patients (including those with MS) in rural communities don't currently have protections that they will be cared for and have their medical costs covered?
• Chain restaurants will be required to provide a "nutrient content disclosure statement" alongside their items. Expect to see calories listed both on in-store and drive-through menus of fast-food restaurants sometime soon. As someone who has responded to my MS with a number of nutritional adaptations, I am LOVING this one. I don't eat out at chain restaurants a great deal, but this would be very helpful.
• The Secretary of Health and Human Services will set up a new Web site to make it easy for Americans in any state to seek out affordable health insurance options The site will also include helpful information for small businesses. I'm a big fan of this feature. Information is power for all of us but people with MS need to make sure we are in the know.
• A two‐year temporary credit (up to a maximum of $1 billion) is in the bill to encourage investment in new therapies for the prevention and treatment of diseases. This is very exciting. I'm hoping this will generate new therapies (e.g., oral disease modifying drugs) and even research toward a cure.

So what do you think?

Infection Healed

My blog was the victim of malicious adware. It wasn't pretty. I apologize for those of you who tried to visit this blog in the last week and ended up getting redirected to various other websites. I don't think any of the ultimate destination sites were offensive, per se (e.g., no porn or radical politics)but, still, it's annoying to get spammed like that.

I am on day 7 of Copaxone. Still getting used to the idea of daily injections. I truly am taking them one shot at a time.

I've been without sugar for over a month now and it's really great. I don't miss it (except when I'm bored, lonely, or trying to avoid a feeling) and my energy level is a lot more consistent.

So, Happy Week After MS Awareness Week!

Day 3 of MS Awareness Week

Passing symptoms may be passing: Good thing.

Blog is infected and people are automatically redirected to spam sites: Bad thing.

I did some quick research on the bug and, when I have more time and energy tomorrow, I think I will be able to fix it myself: Good thing.

Left laptop power cord in the office today so I'm chained to a desktop until I get it back: Bad thing.

Spring came this week and, although it's going to get colder and rainy the next few days, Winter's days are numbered: Good thing.

I have two healthy children asleep in their beds: Very good thing.

I have friends who love me but don't blow smoke up my ass when I need to hear the truth: Very good thing.

I smiled at myself every time I looked in the mirror today which means the love affair with self is still alive and well: Very good thing.

All in all, a very good day.

Day 2 of MS Awarness Week

My day started out beautifully. I woke up early enough to take a shower, do a Sun Salutation pose, get dressed in actual clothing (as opposed to modified jammies), feed my children breakfast, pack their lunches, and walk them to school. It was just too nice of a day, sunny and already almost 50 degrees by 8:00 a.m. (which may sound cold but it was lovely!). On the mile walk back, I put my iPod ear buds in, cranked up Michael Buble and imagined a romantic dinner and dancing date like in some Frank Sinatra movie. I pumped my arms as I power walked home, thinking, "Wow! Life is good. The weather is fantastic and I feel great. Today is going to be a very good day."

I walked in the door, put on the kettle for tea, and sat in my oversized chair with my laptop to begin my day of working at home. First, I just felt a slight tingling and numbness in my right pinky. I tried to remember if I had gripped something really hard or cut off the circulation somehow. And then, a few minutes later, I felt a tingling and slight aching in my right hip and thigh. SH**!

So, what started out as a great day has turned into a POSSIBLE relapse/exacerbation watch. It may just be passing symptoms or it may be more. It's the end of the day now and the sensations are still there but slightly different. More achy than tingly now. I do not know or have any way of knowing if these symptoms are on their way in or just passing through on their way out. I just know that I am scared and pissed and that I'm trying to acknowledge those feelings but then let them go and stay calm.

Fear of relapse is a very dangerous thing because the stress can actually make symptoms worse. When you are afraid, you don't breathe as well, as deep or as often. Breathing is good. Having oxygen coming in is good for the blood and the brain, and, I suspect, for the immune system, as well.

Anger, while a lot more comfortable than free-flowing fear, is no good if you don't have a target. I can't blame myself for what is going on because I did NOTHING to cause it. I have been active (dancing and hiking last weekend), eating really well (almost 4 weeks with no sugar), sleeping well (8 hours a night), doing yoga, meditating, praying, etc., etc. I am doing what I am supposed to be doing so it is NOT FAIR that I am having these symptoms. So, I can't be pissed at myself.  I mean, I could, but I won't.

So, who? God? Well, my definition of a Higher Power is a loving powerful force that can certainly take it. But for what? For having MS? Well, that's nothing new. I had MS this morning before I noticed the tingling at about 8:30am. I had MS when I was feeling like life was great. And, I still have MS. If I'm going to only feel grateful when things are going my way, that doesn't seem quite right.

So, I'm going to wait and see and think about what this experience is teaching me. Happy Day #2 of MS Awareness Week to me.

Every problem has in it the seeds of its own solution.  If you don't have any problems, you don't get any seeds.

~Norman Vincent Peale

 Prosperity is not without many fears and distastes, and adversity is not without comforts and hopes.  ~Francis Bacon

You'll never find a better sparring partner than adversity.  ~Walt Schmidt

The problem is not that there are problems.  The problem is expecting otherwise and thinking that having problems is a problem.  ~Theodore Rubin

There are times in everyone's life when something constructive is born out of adversity... when things seem so bad that you've got to grab your fate by the shoulders and shake it.  ~Author Unknown

 Problems are the price you pay for progress.  ~Branch Rickey

  

When you're feeling your worst, that's when you get to know yourself the best.  ~Leslie Grossman

Let me embrace thee, sour adversity, for wise men say it is the wisest course.  ~William Shakespeare

Even as the stone of the fruit must break, that its heart may stand in the sun, so must you know pain.... [A]ccept the seasons of your heart, even as you have always accepted the seasons that pass over your fields.... ~Kahlil Gibran, The Prophet, 1923

If you can find a path with no obstacles, it probably doesn't lead anywhere.  ~Frank A. Clark 

There is no education like adversity.  ~Disraeli

When written in Chinese the word "crisis" is composed of two characters - one represents danger and the other represents opportunity.  ~John F. Kennedy 

Smooth seas do not make skillful sailors.  ~African Proverb

Welcome to What I Hope Will Be One of the Last MS Awareness Weeks

  
It's MS Awareness Week. No need for cards or flowers. I'm not exactly celebrating either. Won't it be nice when there is a cure for MS and there is no need for a week of awareness for an illness with a vaccine, effective treatment, and a cure? I mean, you don't see polio or TB awareness week, do you? In the meantime, though. I thought I'd mark the week with daily posts to my blog.  Let's see if I can stick to it. If not, I can always blame the MS, right? If you can't blame the MS, well then, I want to trade it in for something I can blame. :-)

 So, day one of my MS Awareness Week posts is going to be pretty lame, I think. I came across a few MS-related news items that I thought I'd share:

• This BBC News article tells the story of a vascular surgeon who has discovered a link between MS and the vascular system. I wonder how and where I can have the blood flow in my jugular vein tested...? And does it hurt?
• A new study shows evidence that women with MS who are described as highly fit perform better on cognitive function tests. More of a reason not to skip the workouts.
• This Science Daily story reports of a link between Epstein-Barr virus and MS. I never had Epstein-Barr. Did you?
• Researchers at The Catholic University in Rome has found further evidence supporting the autoimmune hypothesis that supposes that a viral or bacterial pathogen similar to specific molecules of the central nervous system causes an inflammation which provokes a reaction of the immune system. This reaction ends up destroying the brain cells.
• Click here to download the MS Society's Research Now Spring 2010 issue to read about investigating ion channels for MS, high-tech research in MS, and hope on the horizon for people with progressive MS.

Fatherless for One Year

Exactly one year ago today, I told my dad that I loved him and kissed him goodbye for the last time. When I saw him a little while later, he was gone.

And he really was gone. When I left his hospice room to take a break from the death watch, he was unconscious but his energy was still there. When my sister came out to tell me he died a short time later, I went into his room and he was gone. There was still a body in the bed but it was just a body. 95 pounds of skin and bones and disease. He was really gone.

I believe he went to a better place where he didn't have to struggle for each breath.  It's a place where his damaged family members don't have to behave badly because they are sad to see him go. He went to a place where he doesn't feel pain, anger, shame, fear, or regret.

I'm grateful that I had the opportunity to re-establish a relationship with my dad, especially in the 10 years before he died. I will always be thankful that the kids and I spent February vacation with him the week before he went into the hospital. I know how lucky I am that I was able to tell him I loved him many times before he got very sick and I got to hear him say it back. I knew that he was proud of me and he knew that I had forgiven him. That is huge. While it was one of the hardest things I have ever done, I'm also grateful that I got to be with him in hospice and help him make the journey out of this life.

I miss you and love you, Dad.

Myelin and Monday

• This NPR piece about the middle aged brain was a little disconcerting for those of us who are already myelin challenged. I'm hoping that my addiction to Scrabble will keep further deterioration at bay.
• My new neurologist (#6) and I have decided it makes sense to try Copaxone as my next disease modifying drug. He was willing to give me Tysabri but since I am feeling so great, I decided to try another first round drug for six months before weighing the PML risks. By that time, they will probably have developed the JC virus test that identifies one of the common markers for PML.
• I submitted a short, short story to NPR's latest three-minute fiction contest about an hour before their midnight deadline yesterday. I'm rather proud of myself for just writing and submitting something although winning would be even better.
• I spoke to an old therapist today who didn't know that I had MS. I found myself doing the "lemons into lemonade" cheery default that I do when I'm afraid people will pity me.
• The anniversary of my dad's death is just around the corner and I'm definitely feeling it. I keep thinking, "A year ago yesterday, I was arriving back in Florida;" "A year ago today, we were talking to the doctors about shifting him to hospice;" etc., etc. The actual day is Saturday (3/6). I'm spending the evening with a friend with MS at The Accelerated Cure Project's annual event. 
• I'm going to revive Team Lazy and invite others to do the MS Challenge Walk over two days in September in support of the National MS Society.

Poetic Inspiration

Invictus

by William Ernest Henley

Out of the night that covers me,
Black as the Pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds, and shall find, me unafraid.

It matters not how strait the gate,
How charged with punishments the scroll.
I am the master of my fate:
I am the captain of my soul.

Where's MY Mommy?

I have a cold. It's not even that bad of a cold. No fever, no phlegm. Just a runny nose, a stuffed head, kind of run down feeling, and a little cough. But you know what? This annoys me more than having a chronic, incurable neurological disease.

I'm taking over-the-counter nasal decongestant, drinking tea with honey, making sure I'm getting enough fluids, etc. I have no doubt that I will live even without medical intervention. But in the meantime, I want to climb into bed and be taken care of. I don't remember that ever actually happening when I was a child so I don't think this is nostalgia.

Maybe it's about an unfulfilled desire or may needy is the sick default response. I want to be served chicken noodle soup and juice, and have someone take my temperature with their lips on my forehead like I do for my kids. I want to have extra blankets tucked in around me and be told that I can and should just rest. I want a mommy. Not my mommy. Just A mommy. 

Hump Day Ramblings

They updated videos and journal entries at HowIFightMS.com. I love getting to know my fellow vloggers through their contributions and I love laughing at whatever I said and however I wore my hair during my video (since they usually post them at least a couple months after they're shot). It's funny. My life feels like it moves rather slowly but I think it's actually parading along at a breakneck pace. I think I'm enjoying the journey most of the time.

I'm lonely. I'm saying and writing that out loud because I'm still having the whole love affair with myself and my higher power and I'm trying to trust that when the time is right, I will be in love again and it will be better than I've ever had or could even imagine. Rushing that readiness is impossible and, as I so delicately tell my friends:  How will you know when Prince Charming is at the front door if you are in the backyard blowing the garbage man? (And that is NOT a slur against sanitation workers especially since I have a really cute one picking up my trash every week.) I swear I'm not going to go on a casual sex rant...well, maybe a little...but my statement is not to suggest that casual, SAFE, mutually-respectful, honest sex is wrong or immoral or whatever. In my opinion (and that's the only one I am authorized to express), it is a wonderful thing...if it's what you want. I have done it and enjoyed it immensely. Nuf said about that. I just know that it is not what I'm looking for or want right now and why eat potato chips for dinner just because you're hungry when you can wait and have a gourmet meal. Geesh, I'm full of the dumb analogies this evening. :-)

I am struggling with the bills. I mean, I have a job and I live within my means...more or less. I am struggling with ORGANIZING the bills and paying them in any sort of organized, disciplined fashion. I would love to have a personal assistant to organize my bills and my medical appointments and the kids' school papers and my LIFE. Others have written of this, as have I, but I think I actually need a wife.   A 1950s, comfortable in her role as the support system that allows the family to function properly, wife. I need one. Hmmmm. Maybe I could kill two birds with one stone, here...

I jest.

I am seeing my new neurologist next week. I think this may be my 6th one. There was Kenny Chang, the neuro-opthalmologist who diagnosed me. Then there was Dr. Teeth, his boss, who scared me. Then there was the young cute one who got me started on meds. Then there was Dr. Pless who thought he was God and that I should worship him and his treatment plan, no matter what. And then there was Dr. Lopez-Diego who, apparently, thought she had to protect me from all that pesky information about Tysabri that I must be too stupid to understand. So, with this guy, my intention is to be on time (no small task), honest, assertive, respectful, prepared, and thoughtful. I will take notes to the meeting and at the meeting and I will call with any follow-up questions. Or have my wife do it.

Loving Myself

 

Happy Valentines Day...or whatever. 

I think Valentine's Day is a little silly. It's become this Hallmark holiday that somehow combines the celebration of a martyred saint with a flying baby in a diaper to guilt people into buying stuff to prove their love. But then again, I love getting flowers so I guess that makes me a bit of a hypocrite. 

I do think love is a wonderful thing to celebrate and I am warmed by stories of true love and commitment. I want to believe that once I figure out what I want, the Universe will bring me a great romantic love--better than any I've had before. Because I will be better than I was before. Even without a romantic love relationship in my life right now, I have embraced Valentine's Day this year. I've decided to rededicate myself to loving me. So far so good.

It's two days into my three-day weekend and I am on day 5 of no sugar, I've been to a meeting, I did work on my recovery writng, I went ice skating with Ruby and Zane, I went out to hear some great blues music and dance with a friend last night, I went to church this morning to be with my spiritual community, and I've had down time just hanging with the kids. Life is good. 

How about you? Are you  recognizing and enjoying all the love in your life today? Or at least enjoying all the candy?

"People are like stained-glass windows.  They sparkle and shine when the sun is out, but when the darkness sets in their true beauty is revealed only if there is light from within." ~Elisabeth Kübler-Ross

Hey, I heard you have MS!

A few weeks ago I went into the office for an on-site meeting with a project partner. I like the guy. He's an engineer who consults for biotech firms. He's kind of geeky but in a cute, social way. At the start of the meeting, before anyone else joined us, the guy said, "Hey, I heard you have MS."

When I stopped laughing, I managed to mutter, "Ya...um...ya." Then other people came into the room, the meeting started, and we moved on to work issues.

As you all know, I am all out there with the MS. So I wasn't mad or anything. It just struck me as really funny that he would a). know; b). care; and c). say something about it in such an offhand way at the start of a business meeting. I didn't mind exactly and I definitely preferred his tone to the whole pity response.

So, that was it. Then, last week he gave me a call and asked me if I minded talking to him about my MS. I assured him it was fine. I did wonder, but didn't ask what prompted his interested. I just assumed that his wife or sister or someone had just been diagnosed.

It turns out that this guy is very involved with MS research and education. I'm not sure why he's aligned himself with this particular cause (I've made up a back story about a disabled mom who was diagnosed with  PPMS before any of the disease modifying drugs came along, but I have no confirmation).

He is on some MS board and knows the head of a world-renowned MS Center in Atlanta, GA. So, during our conversation, I found out some shocking, new information about how Tysabri has been proven to help people with optic neuritis and has even shown some reversal of optic nerve damage. And, apparently the risk of PML--a rare brain infection you can read about here--is greatly reduced with the help of a new blood assay that tests immune competency and a virus that is present in more than 60% of those who get PML. 

So, the thing is this. I am not a neurologist. I cannot and would not prescribe myself Tysabri or any other medication. But I asked my neurologist about Tysabri about a year and a half ago--before my vision deteriorated to the point that I stopped driving.

The first time I asked about Tysabri, it was after my first or second vision with my new neurologist when she told me that I had more lesions on my MRI and that she was thinking about prescribing me something other than the Rebif. I said, "I've been reading about Tysabri."

Her response: "We don't prescribe that here." Clear as day. I assumed the "we" and the "here" were the MS Center where she practiced.

A month or two later, however, I was in the MS Center's infusion center getting my monthly Solumedrol infusion, and I met a woman who was there getting a Tysabri infusion.  I was disturbed and a little angry but I decided to trust my neurologist and to see what the next MRI looked like.

So, I waited. And then, the next MRI was this fall and I went through a bad patient rebellious phase and didn't make it into the neurologist for the follow-up appointment until December.  Again, I heard that there were more lesions and that she wanted to make changes and treat my MS aggressively since I am relatively young and not at all disabled.  Again, I asked about Tysabri. This time she said, "No, I don't prescribe that."

So, I decided to put on my big girl shoes and confront the issue straight on. "Um, the last time I was here, " I began, forcing myself to look the neurologist straight in the eye, "You said 'we don't prescribe Tysabri' but, in fact, I know there are patients who are getting it right here in the Infusion Center."

"You must have misunderstood," she responded. "I never said that you couldn't get Tysabri here, I said that I would not prescribe it. The risks of PML are too great and I don't think it would be responsible."

I didn't misunderstand. I know I didn't. I also know--now--that the Rituxan she recommended as the alternative, more aggressive treatment is not even FDA approved for MS and there is a risk of heart issues and the drug would, kill all my B cells and basically kill my immune system.

So, I've decided that I need a new neurologist who treats me like a big girl who is smart enough to handle all the information and make my own, grown-up decisions about my own disease. I do not want a doctor who picks and chooses what to tell me and whose bag of MS treatment tricks is fully stocked with all the options.

I have an appointment later this month with another neurologist at the MS Center. According to the patient coordinator I spoke with, this guy prescribes Tysabri and all the other MS medications. In other words, he is in possession of the full bag of tricks.  I'm going to talk to him about the new information I've received and see if Tysabri is right for me. And then, if he recommends it, I'm going to take the blood test to assess my immune competency and the presence of this virus to see, if I'm in the high risk group for PML. And, if I end up taking Tysabri and my vision improves, I am going to write a letter to the director of the MS center and to the Central New England chapter of the MS Society, and complain about the other neurologist by name. How dare she treat me like a stupid child. It is MY disease.

Battling MS Enemy #1

In my expert opinion (and those of us with MS are the TRUE experts, don't you think?), lack of sleep is Mortal Enemy #1 to MS.

When I don't get enough sleep or my sleep is interrupted and therefore unsatisfying, I am a BEAR to the awakening offenders--animal, human, or electronic.I also don't feel as good ALL DAY LONG when I don't get adequate sleep and I have been known to take it out on everyone and everything that crosses my path.

This morning, the culprit who started it all was my cat Bella followed by my lovely daughter Ruby. Since Ruby came from my body and lives in my heart, I've decided it's in all our best interests to blame Bella.

When we rescued Bella via the Milton Animal League Shelter, we were warned that she would not do well in a house with other pets. They did not tell us, though, that "other animals" includ her own reflection or animals on television.

They also did not mention the fact that Bella is offended by closed doors and scratches at them incessantly until they are opened.  Nor did they remember to tell me about her obsessive attraction to toilet paper rolls and her propensity to shred them down to the roll while we sleep. I guess the fact that she views any jewelry lying about as her personal cat toys slipped their minds, as well.

I keep a spray water bottle on my night table in anticipation of these nocturnal antics. Unfortunately, it's all become a game for Bella. If you spray her for batting about my jewelry, she just moves on to the toilet paper roll in my adjoining bathroom.  If I kick her out of the room and shut the door, she starts scratching until she is let in.. If I let her in and she jumps up on my dresser, she sometimes sees her own reflection and all hell breaks loose, with wailing and hissing at the mysterious white cat in the mirror.

I've had it. I love Bella but I need my sleep. Before I resort to locking her in the finished basement at night, and potentially waking up the entire neighborhood with her lonely cries, Ruby has volunteered her room as the banishment spot. So, I'm off to do my situps and then put  Bella's litterbox in Ruby's very large room and shut Bella in there for the night. 

I'm adding another thing to my "They shouldn't give MS to..." list. They shouldn't give MS to people with crazy cats that don't let them sleep.

Out and About

I am very fortunate to work full-time from home. I only go into the office about one day a month Since a lot of the staff travels, I don't see all my colleagues on the days I make an appearance in the office.

A couple times a year, though, we have work events after hours, usually something fun that gives us an opportunity to bond socially. Yesterday, we all went to a Boston Bruins hockey game with seats in one of the executive boxes that had a bar, cocktail tables, and comfy seats with an amazing view of the ice. Since I don't drink and I don't really understand or appreciate hockey, it was all a bit wasted on me. I wasn't really there for the cocktails or the hockey, though. I was making an appearance and schmoozing with my colleagues. Not that that requires a lot of work. I like them. Well, most of them.

Last night, I had the opportunity to talk to one particular salesman that I hadn't seen in several months. He's a nice enough guy. Truly, but he is a sad eyes kind of guy.

When I first met this man shortly after joining the company, I made the mistake of Facebook friending him. Or rather, I accepted his Facebook friend request because I didn't know how to say "no"without being rude. I got over that a couple months later when I decided to set up a work Facebook account and keep my regular Facebook account to personal friends that I know in real life and/or people I know through the online MS community. I have anorhwe special account for all my online cybersex buddies. I jest. Or do I....?

During the few months that I was connected via Facebook to this guy, he must have happened upon the fact that I have MS. As you know, it does not require CSI credentials to find this blog and I am kind of all out there and here and everywhere with my disease so I shouldn't be surprised when he started talking to me about the MS. The thing is, he doesn't exactly talk to me about the MS. He just gets the big eyes and hugs me (and I should point out that I don't work at a huggy place with huggy people). Then, he usually asks me how I'm FEELING. He says it exactly like that with the oral equivalent to capitalized italics in his tone. Well, last night he upped the pity ante. He said, and I quote, "How ARE you? It's so good to see you out and about."

Excuse me?

Out and about? OUT AND ABOUT? Am I bedridden or just housebound and pitiable?  I should mention that I think I looked pretty damn cute last night. I was a little tired but SERIOUSLY.....OUT AND ABOUT.

I did, of course, say none of this. Instead I smiled and moved on with my schmoozing, resting assured that I could say what I wanted to say here.  So...what did I want to say?

Maybe this:

"Seriously? You're pitying me? Really? Why, pray tell?  I have a wonderful job that I get to work at home. Yes, I have a disease but everyone has something and mine has a name. I live in one of the best parts of the country to have my disease treated. And by the way, I look damn good and not just for a woman with MS. So, please, do not pity me, do not give me sad eyes, and do not hug me unless you are just trying to press up against my fabulous body in which case, eat your heart out."

Farewell 2009!

It's been a year of love and loss. It's been a year of adjusting to change and of settling into what is. It's been a year of growth and of trying to pare things down to what's absolutely necessary. There has been laughter, tears, yelling...too much yelling...swearing, praying, reading, learning, writing, talking, listening, escaping, discovering, denying, accepting, bitching, moaning, giggling, sweating, sleeping...well, you get the picture. It's been a year of life and all that it has to offer.

No one could or would ever accuse me of living life in the safe spots. With each day that I live and breathe, I do it fully and completely, good and bad, as close to the edges as possible. It's a mental/spiritual/emotional thing and some days I live fully without ever taking my butt off the couch. And I can't even blame the MS. Some days I'm just lazy and choosing to live between my ears. :-)

A friend sent me a video today about self love. I think that's going to be my focus of 2010. I am going to do all that other stuff I've been doing--good and bad, I'm sure--but I'm also going to work on loving myself. Piece of cake, right?

Happy New Year! Blog on, babies.

The Creatures Are Still Stirring...

I suspect the excitement of Christmas tomorrow will lose out over the need for sleep and my children will soon fall asleep and allow Santa to do his work.  In the meantime, Happy Holidays to you an yours and may 2010 bring you all a boatload of really great stuff like:

• The passage of a pretty crappy and diluted but necessary first step in achieving health care reform (you have to walk before you can run, right?)
• Oral meds to treat MS
• Some serious progress in stem cell research to find a cure for MS and other currently incurable diseases
• Peace on earth
• True love.
  
• The demise of all those quilted handbags with paisley prints that are bizarrely popular but very, very ugly and remind me of a grandmother's knitting bag.