THE SHAME! THE SHAME!

I am the proud captain of Team Lazy, a group of 10 wonderful women participating in the Boston MS Walk on Sunday, April 5. The walk is only 4 days away and I am mortified that I am not the team's top fundraiser. I am very competitive and I am the captain after all. I'm not quite sure how I will maneuver the 6-mile walk with my head hanging low in embarrassment and my feet shuffling in shame. Please help me regain my typical proud posture and raise money for an incredibly worthy cause--finding a cure for MS, so no one else needs to be pulled into a private room to hear those life-changing words: "You have Multiple Sclerosis."

Click here to make a donation of any size. Any and all contributions are welcome and incredibly appreciated.

Remembering Those Who Are Gone

I keep hearing songs that remind me of my dad. "Bad, Bad Leroy Brown" by Jim Croce was the first. I smiled when I heard it, remembering Dad in our house in California, dancing around the living room with a drink in one hand and a cigarette in the other. In those days, he had a curly Afro and a mustache kind of like Jim Croce.



I keep passing his name in my email and cell phone address/phone books and remembering that he is gone. I miss him but I know, without a shadow of a doubt, that he is in a better place. I watched him in the days and hours leading up to his death and it wasn't pretty. I know how much pain he was in. I know how much effort it took to breathe in and out at the end. I know he left this earth because his body gave out and he wouldn't want to be here anymore like he was at the end.

In some ways, the harder loss in my daily life is the breakup with Ken. We broke up a couple of weeks before my dad died because he didn't want to make a commitment. I got to a place, after 3 1/2 years, where I was ready to move forward. He decided that he was not in the same place and wasn't sure he would ever get there. I would like to be angry, but I'm mostly just sad.

Unlike the passing of my father, this loss was and still is complicated and I'm not totally at peace with it. This was Ken's choice. The rejection added to the loss is like salt poured onto a very deep cut. It would be nice to say I'm handling it with grace and dignity, but that wouldn't be completely true. I haven't drank, smoked, or taken a recreational drug, but I found some other fun ways to act out for a the weeks since my dad died. I'm writing a couple essays under a pseudonym right now about some of that behavior.

I decided yesterday that I had to "unfriend" Ken and his family on Facebook because I was not ready to be his friend in real life. I don't know how to see his face and read his updates and not have unreasonable expectations. No matter how much I want it to be true, Ken's not going to see a post on his daughter's profile page and think, "Wow, Julie is so awesome. What have I done? I love her madly and I must do whatever possible to be with her forever and ever!"

I didn't put the break up stuff on here before (which is why I put it on my other blog)--I think because it would make it too real. I'm ready to this grieving process going so here you go.

I had a dream last night that began in Ken's house. I was knocking on his son's door to give him a hug goodbye. In the dream, Matt was taller and bigger than the last time I saw him, like he had been through puberty and I had missed it. I thought I would be a mother figure in his life when that happened but now I won't be. Then I knocked on his daughter's door to say goodbye to her. I think I got teary as I gave Ally a hug. As I started to leave the house, Ken approached me with a box filled with my things. There were all kinds of stuff in there that he doesn't even have in real life, like clothes, books, and Zane's baby toys. As he handed me the box, I saw he was wearing a ring. It was on his wedding band finger and it was a turquoise heart ring. He had obviously committed to someone other than me.

The dream went on with buses and trains and other people, including one hysterical scene where Christina was on a train with me complaining about how filthy it was. I got off a stop too soon and had to run to catch the train at the next stop because I was afraid she would get lost.

According to dream analysis by the amateur team of my friend Nancy and me, the dream was about missing Ken and his children and the possibility of becoming a family together. I think the box was about the fact that I gave him everything, my whole heart, and he gave it back and said he didn't want it...or me. And then, when he was able to commit, it was not to me. It was very, very sad. I think the whole train stuff was about moving on, or trying to, and that was very sad. And I was moving on...or trying to and having trouble but I had friends there to help me.

So, suffice it to say that I am kind of in a shit storm these days but I have to believe that it means there is gorgeous weather on the other side. My friend Theresa shared a wonderful story with me:

One day the only survivor of a shipwreck was washed up on a small, uninhabited island. He prayed feverishly for God to rescue him. Every day he scanned the horizon for help, but none seemed forthcoming.

Exhausted, he eventually managed to build a little hut out of driftwood to protect him from the elements, and to store his possessions. One day, after scavenging for food, he arrived home to find his little hut in flames, with smoke rolling up to the sky. He felt the worst had happened, and everything was lost. He was stunned with disbelief, grief, and anger. He cried out,

"God! How could you do this to me?"

Early the next day, he was awakened by the sound of a ship approaching the island! It had come to rescue him! "How did you know I was here?" asked the weary man of his rescuers. We saw your smoke signal," they replied.

I am in the hut and it's burning but the rescue ship is on its way. I hope they have snacks.

MS and I are Alive and Well

I haven't written anything in a while about Multiple Sclerosis--humorous or otherwise. Here's a mini wrap up of how the disease is doing--in me and the world.

• MS is running scared now. President Obama reversed the insane ban on embryonic stem cell research and the war on science is over. Listen to this NPR Story for more info. Maybe I won't have to travel as far for a stem cell vacation. It seems that even people way closer to the center than I am who use words like "unborn" to describe fetal tissue, understand that millions of living, breathing human beings will benefit from this important research. Check it out.
  
• Montel Williams appeared on the Oprah Winfrey Show to talk about living with MS. While I thought it was very important to bring MS to such a public forum, I objected to the description of MS as a "life-threatening" neurological disease. I felt incredibly grateful when I heard about Montel's constant pain. I would NEVER trade my visual impairment for pain. Check it out for yourself.
• The BBC has been covering a story about a woman with Multiple Sclerosis. Apparently, she brought a case in the British courts that would enable her and her husband to travel to Switzerland to commit suicide. I'll let you hear it straight from the woman's mouth. Here's a link to the video. I do not live in this woman's body nor do I have the knowledge to comment medically on her case but, I resent MS being moved into the category of diseases that are so horrible that people would rather die than live with them. These kinds of stories are why, when I tell people I have MS, they say stupid stuff like "Oh no. What are you going to do? What about your kids?" or tell me about their aunt her "died" of MS 20 years ago.
• I've heard a lot of talk about MS meds that will not require an injection. When searching for updated news today, I found this story about buckeyball technology used to create new meds. Interesting although I strongly object to the characterization of MS as a disease that slowly paralyzes and then kills. I also found a company in Berkeley, California that has filed for a patent for oral MS meds. So...what's next? What comes between patent and production/sale? Big Pharma may not be angelic but they are the ones with the money to make a difference. Merck is funding new research, too. Hope their merger doesn't slow it down.
• There are also research going on to reverse nerve damage caused by MS. A drug used to fight Leukemia is showing promising results.
  
• March is Multiple Sclerosis Awareness Month. There are many different activities going on, including education, events, and activities. If you are looking for a way to raise awareness and money, I would be happy to provide you with an opportunity to do so. I have formed a team -- Team Lazy -- to participate in the Boston MS Walk on April 5. Join the team or make a donation.

Happy 1st day of Spring!

Rest in Peace, Dad

My father died at 3:45pm on Friday, March 6.

I'm so grateful that I said everything I needed to say to him when he was alive and conscious during the years before his death. I repeated all the stuff I thought was really important when he was no longer conscious and dying at the Sarasota Hospice House.

It was a horrible death. He suffered for each breath during his final week. He was less than 100 lbs. and not able to do anything, even open his eyes at the end. It was painful and even the high doses of morphine couldn't totally relieve his pain until he finally took his last breath and slipped out of his body.

But he is no longer in the ravaged body of a man with emphysema. I want to imagine him breathing big deep breaths and smiling in heaven with Goober, Luke I, and all his other dog friends that died over the years. He is sailing and hunting and fishing and being outside. He is telling stories and smiling at those he loves. He has a head full of curly black hair again and he is showing off with push-ups with a clap in the middle like he used to do in the driveway when I was a little kid. He has started a Craigslist in heaven so he can keep making deals and getting bargains. He is at peace.

I think I am, too...with his passing, that is. I miss him but I know that he is in a better place. That does not mean, however, that I am not a little nuts right now.

I am bruised and wounded by my family's craziness while he was dying. I'm horrified by my ability to pull the dead dad card whenever I want to say or do something inappropriate. I am sad that, for all intents and purposes, I am now an orphan. I am guilty and a little mad that everyone won't agree because my mother is still breathing. I am determined to work through all these feelings and try not to get sick. I want to be kind and gentle with myself and not abuse my body, mind, and spirit with old patterns and escapes. I want to be with my feelings without being filled with self pity.

I'll let you know how it goes.

My Dad is Dying

I'm in Florida...again, sitting by my dad's bedside in a hospice house, waiting for him to die.

On February 14, I arrived to visit my dad and have fun in the sun with the kids during their February vacation. It was a good visit. I was surprised by how skinny Dad was and how much his wife drank, but it was a good visit. We talked a lot and "Grampy Baker" chauffered the kids and me to the beach every day. When I returned to Boston on 2/20, my dad had a cold but was still very much awake and alive. We discussed Obama's stimulus package and the sour grape Republicans who semed to be obstructing change just because they didn't win in November.

A couple days later, I got a call from my sister saying that my dad's cold got worse and he had been hospitalized with double pneumonia. Apparently, he was conscious then and reluctantly told his primary care doctor that he would be willing to be intubated if need be. And, of course, that's the way it went. The oxygen mask wasn't doing it, he kept trying to rip it off and, when Linda went to the bathroom, she came back and he had been intubated.

I was shocked to learn that, although he had been diagnosed with emphysema/COPD several years earlier, he did not have an advanced directive, a living will, or had not even dicussed his wishes with Linda, his wife.

Much to everyone's surprise, the ICU was able to excubate Dad and put him back on just the oxygen tubes in his nose. But he never fully regained consciousness. They don't know if he had brain damage as the result of lack of oxygen to the brain or if he suffered a stroke. Either way, his eyes were open on and off and he was moaning but he was no longer able to focus on anyone, communicate, or even respond.

We switched him to hospice status on Wednesday but we chose to do it at the still in the hospital. Discovered today that the nurses weren't automatically giving his morphine. He's being moved to a Hospice House outside the hospital now. May he rest in peace soon. I told him he didn't start out that way but he is a very good dad and I love him very much. I've told him everything. Now we wait...

A Valentine's Day Challenge

I learned about this 6-Word Valentine's Day Memoir Collection on NPR and I thought I would put it out there to all of you...with a twist.

In six words, say what you love about having Multiple Sclerosis.

Ok. I know this seems a bit nuts but, hear me out! I remember going to a body image workshop once where we all had to identify parts of our body that we hated and then say three things we liked about that particular, hated body part. It really helped and I have a much different relationship with my ass as a result of the exercise.

I also really enjoy the challenge of using limited words to express myself. As regular readers know, brevity is not my strong suit.

Here's mine:

I now give myself permission to rest.

Give it a try!

Video from the "I Have MS and I'm Fabulous" Group on Facebook

I found this video in a new Facebook group I joined--I have MS and I'm Fabulous.





I really want to get that MS tattoo with the Superman symbol!

A Multiple Sclerosis Haiku

I tell them the news.
Head tilt. Arm squeeze. Tearful eyes
"But you look so good!"

What the Hell is Private Pain?

I don't think I have always been an exhibitionist. I did visit a nude beach quite often one summer in college but everyone else there was naked, too, so that doesn't really count. I never streaked or flashed or had sex in a public place...not that I remember, anyway.

But that's not really the kind of exhibitionism I'm talking about. My name is Julie and I'm an emotional exhibitionist. I don't know how to feel anything intense without telling the world. Except, that it's not always appropriate. I rarely give a shit about that sort of thing but sometimes it's about other people. If my inappropriate over-sharing drags another person into the realm of over-sharing without their consent, is that fair?

But it's my blog. I have the disclaimer in a sidebar about people who know me running the risk of showing up here so, in a court of law, I'd probably be covered. But what about other people's feelings? Is is, after all, not all about me. So, I write in abstract and feel like I'm drinking near beer or decaf or I let it rip and possibly cause pain or embarrassment to people I love.

So, there's the dilemma. And how does one have a dilemma without tweeting, updating Facebook status, and blogging about it? I have real friends to, who I actually speak to on the phone and see in person. I've been talking to them often the last several days. That is no longer enough.

How do other bloggers/writers handle this problem? Do you have a separate, secret, unlinked blog to share the real dirt? Do you revert back to writing in Word or even with pen and paper? Do you just say "screw it" and put it all down for the world to see, read, and judge...even when it's not just you that will be judged? Do you create fictional characters that represent you and the other real people? Do you practice restraint of tongue and pen and simple talk out loud to those you can trust?

I feel like my writing is my release.What I express here is my authentic self. How do I put that back in the can? I don't know how.

Facebook 25 Random Things

Facebook has this somewhat disparaged thingamajig floating around called "25 Random Things." Two well-respected journalistic forums, Salon.com and The Huffington Post, have published articles in support of this widely-distributed social networking feature. I've really enjoyed reading my Facebook friend's revelations and thought I'd share my own here. Don't get too comfortable because you're next.

1. My parents did not give me a middle name at birth. I was told that girls didn't get middle names because we would get to use our maiden names WHEN we got married and took our husband's last name. At 18, I legally changed my name to include the Marie I took as a Confirmation name after my Grammy Marie passed away. I was born Julie Baker and I will always be Julie Baker.

2. The first time a boy asked me out was in the 6th grade. I had just moved to the neighborhood (either Racine, Wisconsin or Sparks, Nevada). His name was Duane Johnson and he wanted me to go to Dairy Queen for a cherry dip cone. I said no because I was nervous.

3. I am a sucker for men who write poetry and/or music, especially if it's inspired by their feelings for me.

4. I am legally blind in one eye.

5. I used to be freakishly strong (carrying my end of the sleeper sofa up a flight of stairs) but now I only possess normal physical strength. Emotionally, though. I'd like to believe I'm still freakishly strong...with the help of my peeps and my HP.

6. If Ruby was born a boy, her name was going to be Adam Monroe.

7. Zane weighed 2 lbs. 13 oz. at birth.

8. I have tattoos: One Fish, Two Fish, Red Fish, Blue Fish on my lower back.

9. In elementary school, I stayed inside for recess to participate in spelling bees--the boys against the girls--and, more often than not, I won first prize. I liked spelling but I think I liked the prize more, a Tootsie Pop.

10. Although I have my Bachelor's degree, I have never successfully completed a college-level math class. Like Barbie, I hate math. That's probably the only thing we have in common.

11. Boogers come out my nose when I cry. I'm an ugly crier.

12. I love freecycle and craigslist free stuff and I have furnished 3/4 of my house from my finds.

13. My favorite candy is Good n' Plenty.

14. I believe in a Higher Power but I don't totally understand or need to understand what he/she/it is all about. I can tell you how it makes me feel to trust and feel loved and cared for and see this source working in my life, but I can't explain it beyond that.

15. I do a really good impersonation of Edith Bunker singing the theme song for All in the Family, Those Were the Days.

16. My first paper route was at the age of 8 and it was illegal. My older brother delivered newspapers for the Hartford Courant and, when he went to Lake Tahoe to visit my grandfather for the summer, I took it over. I had to pretend I was a boy, though, since the Hartford Courant had a policy at the time that girls were not allowed to deliver papers (I think it was 1972). One day, my hair fell out of my baseball hat and a customer reported me. When the newspaper said they were going to fire me, my mother told them she would take responsibility until my brother returned. At the age 12, I was fired from my last paper route. Although I had always been conscientious before then, I started dumping my papers in the woods so I could go hang out with my friends after school. I came home one day to find my route manager sitting with my father in the living room with a pile of dirty papers at their feet.

17. I picked and "sewed" tobacco the summer I turned 15 for the Consolidated Cigar Company in Broadbrook, Connecticut.

18. The first short story I remember writing was in 6th grade and it was a fable about Rattlesnake Mountain in Nevada which I could see from my house in a nasty little suburb called Sparks.

19. The first poem I ever wrote was about a boyfriend who went to sea in the Navy and it was really, really bad. I still remember the beginning: "He's gone away for a time. I want to say it's all just fine. But, God, so long before we speak, I hear a song and start to weep." The last poem I wrote was yesterday and I think it was only slightly better.

20. My mother wouldn't let me get my ears pierced so I snuck off and did it anyway when I was 13. I hid it successfully for about a week by wearing a bandanna on my head and covering my ears.

21. I joined the U.S. Army when I was 17-years old as part of the delayed entry program. I was supposed to leave for basic training after I turned 18 to become a teletypewriter repairer. I didn't go.

22. I've had three different boyfriends named Ken. I only fell in love with one.

23. I smoked cigarettes for 20 years--from when I was 12 to when I was 32.

24. After I had my last cigarette, I signed up for the Boston to New York AIDS Ride. It was the year they did 4 days instead of 3 and it was the hardest year of all. I rode my bike 308 miles from Boston to New York through hurricane force winds and rain. After finishing the AIDS Ride, I knew that I could do anything if I set a goal and worked toward it.

25. I am filling this out now to distract me from my conflicted feelings.

Now it's your turn.

Join Team Lazy!

I formed a team to participate in the 6-mile Boston MS Walk. I would love to have you join Team Lazy as a participant or a supporter. If you can be in Boston on April 5, visit the website and join Team Lazy. For a limited time only, anyone who signs up to join our team will get a free ride in a horse-drawn chariot with a sexy servant (of either gender) to fan you and feed you grapes as you travel through the city.

Ok. Not really. But you will have a fun day and get a purple Team Lazy t-shirt, compliments of moi. And out-of-towners who I know, like, and trust with my children can even have a pull out sofa and/or floor space to sleep on.

If you aren't up for the 6-mile walk or live too far away, I hope you will consider making a donation to the cause. My personal and Team Lazy fundraising page can be found here. No contribution is too small because every little bit helps in the fight against Multiple Sclerosis.

We are walking and asking you to donate so the MS Society can find a cure. It will be a great day when no one else has to be pulled into a private room to hear those dreaded words, "You have Multiple Sclerosis."

It's funny. They pull you out of the hall to tell you in private but just the fact that they are pulling you out of the hall kinda gives you an indication that the news is not good. If test results are negative or benign, they just tell you in the hall...right?

But I digress.

As you know, I rarely use this forum as a fundraising arm for the MS Society or any other group. This is different. This is personal. Since I was diagnosed 16 months ago, I've tried to take this disease and use it to transform my life...in a good way. My goal has been to wring every bit of awareness and humor out of the lesions and symptoms, and the changes they've caused in my life. I can actually tell you that I'm grateful for the MS because it's brought me back to my writing and on the road to a truly authentic life. But now that I'm here, I'm kind of ready to let go of the MS so let's find a cure, shall we?

Seriously, though. I've tried to help others and increase awareness of MS so people won't do the arm squeeze, head tilt, and puppy dog eyes and make all of us with the diagnosis feel like we received a death sentence. It's been a pretty selfish pursuit. I've done it to stay positive and sane. Now it's time to give back. I hope you will help me do that.

Which do you want to hear first? The good news or the bad news?

Every now and then I have a major realization about my MS. This time it came from a very hopeful article about using our own stem cells to reverse the damage (including vision impairment) caused by MS. The part that kicked me in the butt, though, was the line where the author said that, after out 10-15 years of having relapsing and remitting MS, the disease progresses to secondary progressive. It was stated as a universal fact.

Is that true? Is it 10-15 years after the diagnosis or the onset? And, if you aren't sure when the disease came alive in you, how will you know when you're time is up? And, since this is an unpredictable disease how the heck to you prepare for it to get worse? If you build wheelchair ramps and you go blind, you are shit out of luck. How will learning Braille help if you lose all short term memory or bladder function?

When I was pregnant with Ruby, I had 40 weeks to prepare. I bought diapers, took an infant CPR class, saved up sick time for maternity leave, and decorated a nursery. I read a ton of baby books and, after she was born, I kept reading, trying to stay a month or two ahead of her latest development.

When Zane was born 12 weeks early, I obviously didn't have as much prep time, but it was ok. I had done it before. I knew how to breastfeed and change diapers, and, in the 8 weeks he was in the NICU, I had tons of time to learn from the nurses, read preemie books, etc.

How is that possible here? I've read a TON of books about MS but they all basically say the same thing. It's a crap shoot. Then, there's the conflicting information. Use disease modifying drugs. Use LDN. Reject all the drugs and just change your diet. Eat lots of protein and low fat. Fast. Rest. Exercise. Keep busy. Rest.

I've figured out how to live with the MS today. I try to digest all the advice, listen to my heart, find people I trust, and take what I like and leave the rest. I give myself 3 injections of Rebif each week; I pray and meditate; I try to keep to a low-fat, low sugar, dairy free, red meat and pork-free diet; I do yoga; I walk; I write; I try to not be my former freakishly strong macho self when it comes time to move a sleeper sofa and other physically strenuous tasks; when I'm not being a "non-compliant patient," I get my monthly Solumedrol infusions; and I try to live one day at a time.

But how do I prepare for the future? Am I being Pollyanna or Annie, to just trust that if I play "the glad game," "the sun will come out tomorrow?" Should I be DOING something?

Mr. and Ms. MS

Who Keeps Moving My Chair?

Do you know how people say, "I was so shocked that I almost fell out of my chair!"

Well, I did. Fall out of my chair, that is. Not once, but twice and shock had nothing to do with it.

The first time was a couple weeks ago at Ken's house. It was a rolling desk chair and I was in the process of sitting down. It was kind of a slow motion thing that ended with my ass on the floor. I thought maybe his desk chair wheels were faster-moving than what I was used to or that he had recently waxed his hardwood floors. Uh-uh. Apparently, it was me. Ken was right there and, although he seemed surprised by my lack of grace, he didn't seem overly concerned with the cause. So, I decided to forget all about it.

Until it happened again.

A week or so later, I repeated the whole thing while sitting down at my desk chair at work. One minute, I was lowering myself into the chair. The next I was on the floor. I work at a very casual office and my office attire usually consists of jeans and a sweater or a blouse and a jacket. On this particular day, I decided to dress up a bit. I'm not sure why, perhaps to give my coworkers a show when I landed on the floor.

I had on a fitted chocolate brown sweater and a straight leather, knee length skirt with an earthtone patchwork design. Thank GOD I was wearing pretty thick, chocolate brown tights and tall boots. Nevertheless, I was rolling around on the floor, in a skirt, trying to get up when I heard my coworker in a nearby cube say, "OH MY GOD! What happened? Are you all right?"
It was kind of hard to blow it off in this setting. First of all, there was a carpeted floor and it was the same chair that I'd been sitting in since I started working there last April.

So, it seems that I have a new MS symptom to add to the list. Falls out of chairs. I'm imagining it's balance related. All I know is that it definitely left a mark--on my ass and my ego.

When I discussed the second fall with Ken, he reminded me about the first fall and I thought Uh-Oh. He also proceeded to give me chair-sitting instructions complete with chimed in advice from his 13-year old son. "You have to reach back with your hand and hold on to the chair, making sure you are looking at your seat before you attempt to sit down," they explained, as if I ws a little slow or had recently suffered a head injury.

I found this all incredibly amusing since I have been sitting down on my own for quite some time, at least 42 out of my 44 years, I would imagine. I didn't know that there were rules to sitting and that, if I violated these rules, I might end up on my ass.

When I pointed out the humor in this advice, Ken clarified, saying that because I'm having eyesight and balance issues, there are new rules.

New rules? Why wasn't I notified? Where's my copy of these new rules? If I'm expected to obey the rules, shouldn't I have an opportunity to study them and challenge the rule makers?

Will there be any other new rules coming my way? Should I give up sitting in chairs with wheels? Or, should I stop wearing skirts and start wearing a crash helmet?

The Up Side of Visual Impairment

I considered writing a list of all the things that suck about losing my sight, but I decided against it. It would be boring and pretty negative. So instead...here's my list of the top 5 GOOD things about not being able to see very well:

1. I often mistake objects for other, more interesting things (e.g., I thought the scarf that my colleague threw on her desk was a colorful teddy bear that she brought to work for some inexplicable reason.) It's kind of like seeing the world as a funky, abstract painting.
   
2. When I ride on the train, I now talk to the driver and/or strangers to get help with knowing when we've reached my stop. I've realized that Bostonians are pretty nice people.
   
3. Since I don't drive anymore, the kids and I walk to and/or from school when the weather's nice, and I love walking around our neighborhood.  On other days, they get a ride with our very nice neighbor, Stan, who has a granddaughter in Zane's class. I get rides and other help from a lot of friends and neighbors who live nearby which makes me feel really good about my decision to move back to Milton.
   
4. Dirt in my house is less visible.
5. At 44-years old, I may, at last, be able to fulfill every little girl's dream of owning a pony...well, a miniature horse, actually.  Check it out -- I am so NOT kidding.  

If I get a service monkey AND a guide horse, I could teach the monkey to ride the horse. Then, when I'm looking to start trouble, the three of us could go into Star Market with a copy of the Americans with Disabilities Act in my pocket.

Are These Immune Cells Confused or Just Mean?

MS Resolutions

I heard Puzzle Master Will Shortz say an interesting thing about New Year's Resolutions on NPR this morning. He said that if he thinks of a way to improve himself he tries to do something about it on any day and it doesn't have to wait until the new year. Every day is New Year's Day. A true practitioner of the One Day At A Time concept, if I ever heard one.

I kind of agree and try to be the best person I can be each day. When I fail, which I do on almost an hourly basis, I try to check myself, clean up any messes I've made, make any necessary apologies, and try to do better moving forward. I teach my kids that they can start their day over anytime, as well.

So, why is this post about resolutions? Because I would like to make some MS Resolutions. This is what I wish would happen with MS this year. More than wish. This is what I am resolving to visualize happening with MS this year. Obviously, a cure is the best option but since that does not appear to be on the immediate horizon, I will settle for the following in 2009:

• Oral medication. Enough already with the needles. I feel like a pin cushion.
• More access to quality MS-specific medical care like I get at Partners MS Center. I didn't realize until I started going there that I needed that kind of one-stop shopping in an environment that only treats MS. I know that I am very fortunate to be an insured individual in a major metropolitan area. It's too bad I am the exception rather than the rule and access is not equitable regardless of region and insurance status.
  
• A decrease or at least a cap on co-pays for speciality meds. I hear horror stories all the time of people with MS who have health insurance but still have to pay over $100 per month for one maintenance prescription. I would probably have to do without or give up fresh fruits and veggies if my Rebif cost that much.
  
• Federal funding for embryonic stem cell research to find a cure for MS. I feel pretty confident about this one under the Obama administration. I'm very sorry that Michelle Obama's father lived with MS for so long but I'm very happy that our next President and First Lady recognize the severity of this disease.
• On a similar note, I hope that Michelle Obama agrees to follow the request of some pretty vocal MS activists who have asked her to wear orange to demonstrate her hope for a cure. It's a rocking color anyway and will look fabulous on her. If I am invited to an Inaugural Ball (still waiting), I plan to find an orange gown. Or, if I find a really DROP DEAD GORGEOUS purple one, I will wear orange shoes and make quite a statement. (Crazy lady, coming through!)

Happy New Year MS. You're going down!

How about you? Do you have any additional resolutions for MS?

Where the Heck Have I Been?!

I haven't posted to this blog in quite a while. I'm not sick or hurt or anything. Well, I still have MS and the usual fatigue and ongoing visual impairment, but that's not the reason I've been silent.

So, what have I been doing instead of writing here? Hmmm. Quite a bit and a whole lot of nothing all at the same time. Here's just a few of Lazy Julie's non-blogging activities:

• Playing Wordsmith and Scrabble on Facebook.
• Writing on my other blog (A Woman With A View) and submitting essays for publication and/or broadcast.
• Working from home 4 days a week and in the office on Thursdays.
• Adjusting to walking and taking public transportation.
• Doing yoga on my own when I get off my big, lazy butt.
  
• Seeing friends and getting to meetings when I can.
• Continuing my search for the perfect magnifying glass.
• Discovering a nearby library with a substantial Large Print section.
• Trying really hard not to react when the Ex acts like a jerk (e.g., leaving before picking up the kids when we were 13 minutes late getting home).
  
• Hanging with Bald Hot Ken who, if at all possible, is balder and hotter than ever.
• Decorating anatomically-correct gingerbread women with my kids and friends.
• Watching Ruby as the stable cat in the UU Church's Christmas play.
• Shoveling and playing in the snow with mostly Zane (Ruby likes the cocoa but not the cold).
  
• Discovering great music on the old boyfriend's online radio show.
• Planning and cooking the most delicious Christmas dinner for my family who, for the first time in my 44 years, came to me for the holiday.
• Going to our Annual First Day Hike at the Blue Hills, eating soup, and hanging by the fire, but leaving before the actual hike because it was 20 below 0 with the wind chill factor.
• Playing hostess to my brother Tom and his family on their way from Christmas in New Hampshire to their home in Hawaii.

I hope to not wait so long before posting again.

Blind on the Short Bus

Doesn't the title of this post sound like a country song? Feel free to use it if you're ever composing something that fits. I'm generous that way and I've always wanted to show up in someone's liner notes.

According to my new neuro-ophthalmologist I am certifiably visually impaired. I have a signed form that qualifies me for the MBTA Ride--think short bus for grown-ups. Yup, I'll be on the short bus with all the little old ladies going to Walmart and the people in wheelchairs going to work...as soon as the Commonwealth of Massachusetts processes and approves my application. Knowing my wonderful state government, that will not be a speedy process.

I was becoming a danger behind the wheel--convincing myself that I could see well enough to go to the store when we needed milk, etc. So, I decided to talk to the neuro-opthalmologist and take myself off the rode if he agreed. It's better than having the Registry of Motor Vehicles make the decision for me. Or worse.

I wouldn't want to be crossing the road with my children with someone with my eyesight behind the wheel. I'm relieved and I'm sad.

Monthly Infusion #1

I wrote this on 12/2 and forgot to post it. Woops! I guess that's a good indicator of how I've been. Scattered and sleepy. My December insomnia has kicked in full force which triggers all my MS symptoms. I've dropped a full gallon of milk, many cups of coffee, and I keep feeling like my hands and feet are asleep. I've turned the tides, though, and slept 7 hours in a row last night!

Today was the first of my monthly Solumedrol infusions at the new MS clinic. The best part was that they had wireless so I was able to answer work email and play a little Wordscraper during the infusion. Ok. The Wordscraper part was fun. The work was...well...work.

My nurse was Debra (that's her headshot from the Website but she is much more animated in person). She was very nice and knew her way around an IV. Good thing, too, since I only let them screw up once. I learned how to set that boundary when I became a pin cushion during my 5 1/2 week stay at the Villa de New England Medical Center when I was waiting for Zane to be born.

But I digress. It was really nice to know that all the other people in the room had MS. Well, sort of. It wasn't that fun seeing the people in wheelchairs and with canes, wondering if they were once mobile like me. Just for today, though, I walked in on my own power and was only infused with the steroid medication and not the controversial Tysabri (MS drug linked to fatal brain infections) or any other meds with heavy-duty side effects.

Not that Solumedrol doesn't have its own list of side effects but, as far as I know it hasn't killed anyone. For me, I sometimes get a headache, a metallic taste in my mouth, increased body temp, and a surge of energy. The drug literature includes a really scary list of additional side effects like hair and bone loss but so far, so good, for me. (Although hair loss wouldn't be awful if I could concentrate it on certain body areas.)

But I'm done and don't have to go back until after Christmas.