Is it MS or Just Julie?

My week began by falling ALL THE WAY down one flight of stairs at the side entrance to my condo on Monday morning. (I have a row of huge bruises on my butt and hamstring to show for it.) Was it MS or just rushing in heels?

I dropped a full half-gallon of milk all over myself and

the kitchen floor at work yesterday. Was it MS or just clumsiness?

Ow! My Aching Back.

I've had a busy week. Here are the highlights...or should I say lowlights:

On Monday, Ken and I had multiple misunderstandings via phone and email and I wondered if I was going to have to find a new Halloween costume (we're going to a party at Teacup's house as Sonny and Cher tomorrow night). Because he is a guy, he didn't necessarily go to the it's-our-first-fight-and-because-something-sucks-it-must-be-all-over-place where I visited momentarily. Needless to say, we made up...well, sort of...we tabled the misunderstanding and decided fighting didn't feel very nice. My counselor has suggested I cut him some slack and only revisit the subject with a time limit on the discussion. Ya, that'll be a piece of cake for me.

On Wednesday, a sexy neurology resident named Dr. Thomas made me lay on my side wearing a hospital johnny and no underpants....(I bet you're wondering where this is going, aren't you?) Then, after sticking some small needles with what was supposed to be numbing solution into my lower back (just above my one fish, two fish, red fish, blue fish tattoo), he stuck a much thicker and longer needle into the space between two vertebrae to remove some of my spinal fluid. He actually had to perform the lumbar puncture twice since it didn't go well the first time. After the needle went in, I started having sharp pains and twitching in my right leg as if I was struck by lightning repeatedly. Needless to say, it wasn't fun. The female intern in the room saved me from my panic by asking me what I was listening to in my earphones. It was (of course) Counting Crows, which got me talking about the band, my favorite concerts, my close encounters, etc. which helped relieve the nausea and made me not really notice very much when the needle went in the second time. I hope the mighty (and handsome) Dr. Thomas, learned something from his nameless female intern. Instead of just saying "Breathe, breathe," and expecting me to "toughen up," she did something really radical: she talked to me and got me talking to her which relaxed and distracted me. The remote reiki probably helped, too. Thanks, Laura, and AWOL sister.

Ok. So, that was two days ago and I'm still in pain...when I walk, when I sit, and sometimes, like now, when I lay down. Dr. Cho, my regular neurologist, who also happens to be very cute and likes to wear purple shirts and ties, thinks that the lumbar puncture exacerbated an active MS lesion in the area. I feel pain and tightness in my lower back, my butt, my legs and the knobby part of my spine up by my neck. This sucks. I have to go for yet another MRI of my lumbar region this time. Can someone tell me WHY they didn't just do an MRI of my entire body to find EVERYTHING in one fell swoop????

I still wonder what the hell happened to me????? I mean, I thought I had pink eye for cryin' out loud!!!!!!!!!!!!!!!!!!!!

The other day Christina told me she had a dream that I told her I dreamt that I had MS. In other words, it was all just a bad dream. The, Ken told me he had a dream that I got a shot to cure the M.S. Ahhhh. If only...

I'm reading Eat, Pray, Love and trying to focus on the present and the opportunity within this rancid pile of crap called MS. Is it wrong to think Elizabeth Gilbert had it easier suffering and growing in Italy, India, and Indonesia?

On the plus side, Sandra cleaned my house for the second time today and my refrigerator is SPOTLESS. Well worth the trade for the Buick and I still have 8 weeks to go! Please let me know if you need a housecleaner in the Greater Boston area--she's looking for other clients and she's fabulous. Then, Ruby, Zane, and I ended this crappy week having fun at the Academy Avenue Halloween Parade and Party tonight. Ruby was a purple witch and Zane was a black Power Ranger. I didn't want to blend in with all the normal parents, so I wore a glitter mask and a purple punk wig.

Have a nice weekend.

MS Humor

I just found this posting on one of the MS community websites I visit and I thought it was hysterical...in a really sick and kind of bitter way. This is not meant to offend anyone who has said any of these things to me. I am just making myself laugh and thought you might want to read it.

When somebody says: "But you look so good!"
What they really mean is: "You can't be sick, you're just faking it."
What you should say is:
1. "Then why do I feel so bad?"
2. "You on the other hand look terrible. Have you been hitting the Twinkies a little hard lately?" 3. "If ignorance is bliss, you must be happy as a clam."

When somebody says: "I know this person who has MS. She leads a perfectly normal life."
What they really mean is: "Why can't you? Quit whining about it."
What you should say is:
1. "That's what she wants you to believe."
2. "Obviously she's one of the lucky ones."
3. "I guess that the holes in my brain and the $10,000 per year that I spend on medication are figments of my imagination then."
4. "I've never been there, but the brochure looks nice."

When somebody says: "I know this person who has MS. She's in a wheelchair."
What they really mean is: "You're not. Obviously you're not sick."
What you should say is:
1. "Thank you for reminding me about my future.
2. "Obviously she's one of the unlucky ones."
3. "Aren't we the Little Ray of Sunshine now then?"

When somebody says: "I need a scooter like yours."
What they really mean is: "Come on, you really must be faking it."
What you should say is:
1. "You can have mine if you'll take my disability too."
2. "Step in front of me and say that."
4. "Come here and let me breathe on you. You'll need one in no time."

When somebody says: "I don't have time to be sick."
What they really mean is: "I'm stronger than you. You're just a loser."
What you should say is:
1. "Then you've obviously never really been sick yet."
2. "I'll remember that next time I can't walk/see/sleep/get up."
3. "Does it hurt to have the surgery to remove your head from up your *ss?"
4. "Step a little closer to me and I'll send you to the Emergency Room."

When somebody says: "You're so lucky not to have to work."
What they really mean is: "Congratulations on working the system."
What you should say is:
1. "Being on the poverty line is so much fun."
2. "The best part about it is not having to be around jerks like you."
3. "What makes you think that hanging around doctors' offices isn't work?"
4. "It's so gratifying to pay into the system for so long just to get a pittance in return."

When somebody says: "You're so lucky to park in handicapped spots."
What they really mean is: "Congratulations on really working the system."
What you should say is:
1. "Take my MS and you can have my parking spot."
3. "Yes, the ADA makes sure that we can boldly go where everybody else had been before."
4. "I wouldn't mind if they weren't always full of idiots without handicapped tags."

When somebody says: "It's all a matter of attitude."
What they really mean is: "I don't believe you're really sick."
What you should say is:
1. "Then I guess I'm wasting my time with all these doctors."
2. "Then I guess I'm wasting my money with all these drugs."
3. "Is that a cure for cancer too?"
4. "Yes, and you're not helping mine."

When somebody says: "Don't your injections make you feel better?"
What they really mean is: "You must be cured now."
What you should say is:
1. "No, they make me feel like sh*t."
2. "Sometimes the cure is worse than the disease. This is not one of those cases. But the injections suck, just the same."
3. "Having flu symptoms 2 days a week is trivial compared to MS."

www.gratefulness.org
WORD FOR THE DAY
Friday, Oct. 19

Paradoxically, we achieve true wholeness only by embracing our fragility and sometimes, our brokenness. Wholeness is a natural radiance of Love, and Love demands that we allow the destruction of our old self for the sake of the new.

- Jalaja Bonheim, Aphrodite's Daughters

I feel broken and fragile today. (But, according to the Word for the Day that Theresa just sent me, I'm supposed to "embrace" it. ) Hard day at work yesterday (whatever could go wrong did) and my right leg, from my hip to my toes is simultaneously crampy, numb and tingling. It's going on day 2 so I'm pretty sure it didn't just "fall asleep." I called the neuro to ask if I should just suck it up and say "this is another thing I hate about MS" or if I'm supposed to come in and/or do something. I'm waiting for a call back.

The woman who bartered her housecleaning for the Buick is coming over this morning. (Hmmm? She's VERY late, but she doesn't have the car yet.) I'm mortified because I couldn't clean before she came...or even pick up the piles of dirty laundry. Uggh. I think I'm going to put stuff in my room and make that off limits this time. Baby steps, baby steps.

We're going to Karen Teacups for a turkey dinner tonight. I'm making and bringing the stuffing. Karen and Richard said I could leave Ruby and Zane there for an hour or so when I go to my second chapter meeting of the MS Society. Dr. B (who is an MS Neurologist and beloved by the MS community) is going to speak.

When One Car Door Closes, Another Car Door Opens...

So Muhammed was real. He took a plane to Boston with cash and a Canadian license plate and drove my van home to Toronto today. He's a retired Canadian of Eastern Indian descent who was looking for an adventure, I think. Maybe I should paint a bunch of different cars and advertise them on the AARP web site. "Are you bored with retirement? Shake it up! Your grandkids will be happy to have you leave them this freakmobile when you kick the bucket." Ken's glad it's out of his driveway but I was a little sad to say goodbye.

I'm loving the Volvo, though. Did I mention what Ruby calls it? Let's just say she has noticed the linguistic similarity between the make of my new car and a female body part that rhymes with Mulva.

Karen Teacup and I had a photo shoot (work it baby, work it!) last week when the kids and I went to her house for dinner. She just sent over the pictures so now I can show off my new ride....and my Partridge Family jean jacket. (FYI: My "pose" is not early MS-related spasticity or muscle rigidity. Apparently, I'm just not that graceful.)

Word from Theresa

My good friend Theresa sends me a Word for the Day occasionally. I always seem to get the message I need to get on the day I need to get it.

http://www.gratefulness.org/
WORD FOR THE DAY

Monday, Oct. 15

The most beautiful people are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.

- Elisabeth K. Ross

I want to be beautiful!

Did Too Much Today

Ok. Since when should a person be overtired after sleeping 8 hours at night, sitting on my butt in a meeting for an hour and a half, perusing a bookstore for a couple hours (most of it reading in a comfy seat or sitting on the floor in front of the bookshelves) and buying way too much stupid household and Halloween crap at K-mart? I feel like a ran a marathon! I feel old. I feel like I have MS. :-(

I only got home 10 minutes before John dropped off the kids, too, so I just had time to put away all the stuff I bought and go down to the lobby. We had a gourmet dinner of chicken noodle soup and crackers while Ruby and Zane told me all about the circus. After playing and jammies, Zane and I read The Little Engine that Could and Max's Chocolate Chicken and when I checked on him at 7:30, he was sound asleep. (WOO-HOO!) Ruby has been coloring and working on her the rainforest section of her animal journal (her own project). I just sent her to brush her teeth and to TRY to get all the unidentifiable stuff out from underneath her fingernails and then we'll read the next chapter in Charlie and the Great Glass Elevator. I can't wait. Willy Wonka, Charlie, Mr. and Mrs. Bucket and the Grandpa Joe, and the three grandparents in bed were just about to enter the U.S. Space Hotel at the end of the last chapter.

Ruby just came out of the bathroom, saw her name on my computer screen, and read what I wrote about the stuff under her fingernails (she made me change "crud" to "stuff"). She wants me to remind you that she is only 8-years old. She's afraid she will be embarrassed if this part ends up in my book and the book ends up in the store and people will think she is older and that they will laugh at her having stuff under her fingernails. I assured her that they/you would not laugh at her because all of us have had unidentifiable stuff under our fingernails at one time or another. I think I'm going to close my computer faster next time. Everyone's an editor!

The buyer of my hand-painted minivan arrives from Canada tomorrow. I will believe this when I see it but Muhammed (who won the van in an eBay auction) SAYS he is flying into Boston and will take the Logan Express bus to Braintree tomorrow afternoon. Hopefully, Ken will be able to come with me to meet Muhammed and take him to the van. I've made it very clear that I expect to be paid with either cash or a bank check and Muhammad says he is ok with me sending him the title after I get it in the mail from the RMV. Hmmmm. I know I loved driving the minivan and seeing all the reactions for 2 years and it is my brainchild and my family and friend's mobile art project, but I'm not sure I completely understand why someone who did NOT create this one-of-a-kind vehicle would pay $1500 and the cost of an international flight for a 6-year-old minivan with 107,000 miles on it and no AC, and an AM/FM stereo. What do you think?

My Saturday "Schedule"

I seem to have fallen into a new routine on the Saturdays that the kids go with John. I sleep...a lot...and watch too much TV. Right now I am watching an old episode of Sex and the City. I feel guilty and lazy but I also feel smiley and peaceful so it tells ms that my body needed the break. Eventually, I will shower, get dressed, pack a bag, maybe do some errands, and go to Ken's for dinner and a sleepover. But now it's back to Carrie and Miranda talking about Big vs. Alex. :-)

Gratitude

I had an online conversation with a woman last night who, like me, is a single mom with MS. Unlike me, she has been diagnosed with terminal cancer on top of and unrelated to the MS. She has been given less than a year to live. Her attitude is: I'm already living my life how I want to and I have no time to focus on dying. She has decided to focus on living instead. I really have no right to complain.

P.S.

I just got off the phone with my college friend, Rachel. She made me laugh, think, and feel cared about. (Good luck at dinner, Rachel, and don't forget: You have people who love you exactly as you are--a beautiful, kind, intelligent woman.) Ruby and Zane took advantage of my phone distraction and "decorated" their faces. :-)

TGIF

Tired. Wicked tired. Dropped the kids off, went to counseling, came home, had a conference call for webinar planning and fell asleep for 2 hours. Is it MS fatigue? Is it flu-like side effects from the Rebif meds? Tonight will be my fourth injection. I think I will go with the fatty part of my upper right arm. I've done both thighs, I've done the left arm...gotta keep it moving.

I picked Ruby and Zane up before 3:30 today. We came home and met a new babysitter so I can go to a meeting every Tuesday night. Abby is a nursing student and a mom and Ruby and Zane approved of her. :-) When I asked John if he could keep the kids for an extra hour and a half on Tuesday nights--his regular weekday evening with them--he said "that doesn't work for me." Grrrrr. (Have I mentioned lately how glad I am that I was not diagnosed with MS when I was still married?)

I'm starting to notice that it's a little weird to have conversations with people who regularly read my blog. I love that people are reading it but it feels strange that they have the information edge. They know so much about what's going on it with me and I don't have the same level of info about them. Is this the work of a narcissist who wants it to be "all about me?" Hmmm. I guess all writers of autobiographic books are a bit self-absorbed. I mean, obviously, we think our lives are worthy of other people's interest. Is it arrogant to think that my life is interesting and amusing enough for that kind of attention? Hmmm. Deep thoughts by Lazy Julie.

Have a nice weekend. I am kidless from 9am tomorrow until 5pm on Sunday and I'm looking forward to resting, having a grown-up dinner out with Ken tomorrow night, going to meetings alone, and maybe taking a nice, long walk. How about you?

Me to Jill to Andy Kaufman to David Letterman to Kevin Bacon OR me to Ilene to Suzannah Hoff to someone I'm sure who knows Kevin Bacon!

Five different, nice people sent me this article today and, in the process, I realized that I am WAY less than six degrees of separation from Kevin Bacon. :-)

http://www.cnn.com/2007/LIVING/10/09/bacon.heroes/index.html

Are you FR%&*EN Kidding Me??????

WARNING: FOR THOSE OF YOU WHO LIKE MY INSPIRATIONAL, POSITIVE POSTS, THIS IS NOT ONE OF THEM. I AM PISSED OFF AND I DON'T WANT TO TAKE IT ANYMORE!!!!

Ok. Anyone who has spent even a day outside of work with me knows that I love iced coffee. Winter, spring, summer, fall...I need my iced coffee. I would guess that many of my friends would be able to tell you how I take my coffee: Large, regular flavor, extra skim milk and 2 Splenda. I try NOT to buy from Dunkin Donuts since they give way too much money to the Republican party, but the prevalence of DD drive-thrus on the South Shore makes it tough. I go to my favorite non-DD drive-thru whenever I am in North Weymouth. My nickname for Coffee Express is the Slutty Mary Lou's because it is the antithesis of another South Shore coffee place that features wholesome, beautiful, blond women in pink clothes. Coffee Express, on the other hand, has almost all brunettes working there, who wear black and exude sex...to everyone, women, men, children. They are just sexy women. Not the teasy kind that you get at Mary Lou's. These women look like they like their not-perfect bodies and know how to have a good time. (I mean no insult at all by this nickname. I am, after all, a brunette woman with a not-perfect body, who also knows how to have a good time and never in my life have I been called a tease.)

So anyway, Coffee Express, Mary Lou's, DD, Starbucks...wherever I go, I get my iced coffee the same way: Large, regular flavor, Ken has even purchased a box of Splenda packets for his home so when I stay over his house I can have my coffee to my liking in the morning.

Well, I have just learned that Splenda and Equal (my preferred sweetener prior to the invention/availability of Spenda) may be, if not at the root of my MS, negative contributors to my MS symptoms. I repeat: ARE YOU FR%&*EN KIDDING ME?????!!!!!

Check it out: http://www.issplendasafe.com/top7reasons.html

I am doing a lot of reading about nutrition and MS, particularly since I am taking these HEAVY DUTY meds that, after just 2 self-injected doses, make me have chemical-smelling night sweats. I feel the need to balance that out with something healthy and natural. Anyway, I am finding out that I may need to give up gluten and sugar (I am already ALMOST dairy free--beside the skim milk in my FR#&%EN coffee).

I am not there yet, but I am GETTING willing. I am in the research phase, reading and talking to people about transitioning to a totally different diet to make sure I am doing all that I can do to be symptom and side effect free from MS and the meds so I can live a long healthy life as Ruby and Zane's mommy and a woman in my own right.

So, ok. I'm getting there. I even started picturing using next Saturday and Sunday, when the kids are with John to clean out the cupboards and restock them with gluten free, dairy free, and sugar free healthy foods. And, now this!!!!!!!!!!!!!!!???????????????????? What the h%## am I going to put in my coffee?

I already feel like this MS makes me not me, but this is the last straw! I have to give up my feeling of invincibility, I have to give up my sense of physical well being. I have to give up some of my eyesight for cryin' out loud! I have to give up SO MUCH WITH THIS GD MS AND NOW I HAVE TO GIVE UP MY ICED COFFEE WITH SPLENDA!!!!!!!!!!!!!!!???????????????????????

While I'm ranting...have I mentioned my newest symptom of the jabs in the right butt cheek??? You know how you get a splinter or a sliver or a pricker or something stuck in your clothing and you can feel it poking you? Well, I have that feeling on and off in my right butt cheek but there is nothing there???!!!! It feels so real that yesterday I changed my pants and underwear three times convinced that my ongoing optic neuritis was keeping me from seeing whatever was poking me. After a couple hours, it occurred to me it might be one of the lovely brain/nerve tricks that MS likes to play on me. So, I posted something to an MS sites I visit at dailystrength.com and, sure enough, others had the same thing in various body parts.

Ok. I'm done now. Ohmmmm. Shanti-ohm, shanti-ohm....

Lazy Side Effect Sunday

The kids are watching Cyberchase. I just finished my novel. Lazy, headachey day. Pissed off because I got the code for my volvo stereo but the speakers or antenna or something must be broken because there is no sound. Grrr.

I NEED a gratitude list:

• I have two beautiful children.
• I have wonderful friends and a fabulous boyfriend.
• My cat Pepper is still alive and well.
• I have a roof over my head.
• I have a car (actually, I still have 3 until I turn over the title to my new housecleaner on Tuesday and the van title to the Mohammed from Canada on 10/15.)
• I have a higher power.
• I am clean and sober.
• I don't smoke anymore.
• I have food in the cupboards.
• I have enough money in the bank to pay my bills and not be too panicky when I think about "what if...?"
• I have a great job I love with the best boss I've ever had.
• I have health insurance.
• Tomorrow is a holiday so I have another day to rejuvenate before jumping back into work.
• I am already on the couch and the kids are coloring and watching educational cartoons so the world won't end if I fall asleep right now like I want to do...

It's a few hours later. I'm still on the couch. I got up and made a healthy lunch for the kids (I ate turkey and carrots at the counter) and now I'm back. I called nurse Gina and we think the way I'm feeling is the "flu-like" symptoms that the Rebif can cause in the beginning. Side effects. Yay.

I have about 3 1/2 hours to lay here while the kids play, watch PBS kids, color, etc. to get it together to take a shower, go to the store, and buy a green vegetable to cook at Teacup's where we are going for dinner at 5:30. Can I do it?

Going Back to Diagnosis and Treatment

I feel the need to write down a bunch of stuff about the diagnosis and early treatment just to get it down on paper....er...screen for the book.

So, I get the first MRI and hear it could be MS. Then, on 9/17, I get the second MRI, including not only pictures of my brain but pictures of my cervical and therasic (sp?) spine. This MRI took about three hours and I got to listen to music during the spine pictures. I couldn't listen during the brain pictures. It was Elton John. I asked for Counting Crows but I was told they didn't have a huge selection. The radiologist was very nice. Christina waited in the waiting room to drive me home. We ate Wendy's while Ken picked up the kids and fed them dinner. (It wasn't convenient for John. Grrrr.) I now have a CD with a picture of my brain on it. I'm thinking of creating some sort of art project. Maybe project it onto a wall or something or develop a picture and cut it into little pieces to make a collage. Stay tuned.

Oh, the second MRI confirmed the MS diagnosis and showed old and new lesions on my brain, optic nerve, and spine. If there are all these lesions, how long have I had MS? I question EVERYTHING that happened before my optic neuritis started on 8/30.

I remember saying to my ex once that I was a very healthy person but it was weird that, whenever something was wrong with me it had to do with inflammation: tendinitis and lots of different inflammed muscle injuries, ulcerative colitis, carpel tunnel, costracondritis, etc. Were all those things because of MS?

I'm reading now that depression is disproportionately common in MS, more than any other chronic illness. Was my depression that was diagnosed after Ruby was born related to the MS?

I have ALWAYS been clumsy. Is that MS? A few months ago, I fell down the stairs while we were at an audio studio. At the time, I was mortified and joked with my colleagues that it was a good thing the President of the company wasn't below me or I would taken her out. Was that MS? I always have bruises from bumping into stuff. Is that MS?

What about the cognitive issues that can affect people with MS. Sometimes, I say the wrong word (e.g., "closet" instead of "coat") or forget where I put something. Is that MS?

What about the laziness? I mean, people who know me (and like me) laugh when they hear that I think of myself as lazy, but sometimes, I do. I can feel like I HAVE to spend the day on the couch sometimes when the kids go with their dad. Not emotionally, just recharging. Is that MS?

I met with a neurologist at MGH that I like a lot. It was sometime before the second MRI because he ordered it. His name is Dr. Tracy Cho. He is cute (not that that's the only reason I like him!) and he seems to think I am smart and interesting and worthy of his respect and answers. Kenny Chang was nice, too, but that is not always the case. Kenny Chang's boss, Dr. Teeth, as Ken and I called one of the neuro-ophthalmologists at MEEI, patted my hand and told me not to read so much because it would just make me nervous. He also talking to me in a condescending voice and, when I questioned something, said, "Don't you see?" I responded in what I thought was a completely appropriate manner: "No, Dr., I don't see, that's actually why I'm here! I work as a marketing manager, not a neurologist or ophthalmologist so this is not my area of expertise!" After that, he started talking to Ken who was with me. If he had a bubble over his head showing his thoughts, I think it would have said something like, "Well, she's a real B*&CH and hysterical, too. I better talk to the rational man with her. Maybe he can calm her down." Grrrr.

Ok. Is it more cognitive issues that I'm not sure if I already wrote all of this before but I don't have the energy to go look and see? :-) Whatever!

Anyway, Dr. Cho insisted that, before I select him as my primary "MS neurologist," that I keep my November appointment with Dr. Misha Pless, who is a specialist in MS, which is why I had to wait so long for an appointment. In the meantime, Dr. Cho is caring for me. He prescribed a second round of IV steroids (with no oral steroid follow-up, thank you very much) for my vision which was bad again a couple weeks ago. This time, instead of getting infusions in the MEEI ER (and seeing prisoners led in in handcuffs and shackles who got to bypass the long line), I got to go to an infusion clinic where people go for chemo. This sounds weird, but it was lovely! Not only were the nurses fabulous, but I sat in a lounge chair for a few hours, they gave me snacks, coffee, soda, water, juice, and my own remote to my own Direct TV monitor. I watched HGTV, Discovery Home and all these other channels I don't get at home anymore. I felt sick and worn out afterward, and had hot flashes, flushed skin, and pimples for a week afterward, but it worked and my eyesight improved so I guess it was worth it. I did tell the nurses, they should hire people to give us pedicures during the infusions. They could take a cut and make a mint!

I ordered delivery pizza and a cheeseless calzone for dinner. (I never do that!) The kids are watching Postcards from Buster (I miss everyone in Children's Programming at GBH sometimes) and we are waiting for the bell to ring. Am I just lazy?

A Cool Poem--Click on the Link

I found the coolest poem about God/Higher Power/Spirit: I thought you might like it.

First Stick and Bartering

Friday, October 5: This morning, my fabulous nurse friend, Gina, came over with her son Jack (who just turned 4) to hold my hand and help teach me how to give myself injections of Rebif. Like most things that scare the heck out of me, this wasn't so bad. I had to go in the bathroom to pray and cray and pee just before doing the whole stick thing, pretty sure that I wouldn't be able to do it. Gina assured me that I could do it, and sat next to me while organized my supplies, put the meds in the injection pen, cleaned the injection site, and stuck myself. It was actually quite anticlimactic after all the build up. I wasn't even sure the needle went in until Gina showed me the empty syringe. Wow. So now, I get ready to do it again every Monday, Wednesday, and Friday. I can do this! I AM doing this!

You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. - Eleanor Roosevelt

I also finalized a fabulous bartering deal today. I traded the Buick for housecleaning and laundry. My amazing friend Christina (I am so blessed with great friends!) gave me housecleaning as a gift which was very, very helpful with my initial MS fatigue. Merry Maids did a great job but it's very expensive (MY CONCERN, not Christina's), and they don't do anything "extra." So, as soon as we are done with whatever payments Christina made to Merry Maids, Sandra will be cleaning my house once a week for 13 weeks, as well as doing a couple loads of laundry, folding it, and putting it away. I feel like I died and went to heaven! So now my dilemma is: Do I tell my dad that I took his Buick gift and traded it in for a gift of housecleaning and laundry? Thoughts?

I had two separate, but almost equally embarassing things happen since I last posted. I would like to include them in the book which means I should probably include them here but I think I might die of embarassment if anyone else (I had to share each story with one person). Maybe I can just be somewhat vague and save what little face I have left:

Embarassing incident #1: I left a rambling message for a work colleague yesterday (MS Cognitive Malfunctioning? Tiredness? Middle-Aged Social awkwardness?) that ended with me inadvertently saying something that could have been miscontrued in a sexual way. Thank Goodness, I remembered that, if you press pound, you have the option to erase and rerecord the message. I pressed all the appropriate buttons and thought I was successful. Then, last night I received a weird email from the colleague that makes me think the erase/rerecord didn't take. I chose to ignore it and I'm thinking I'm gong to have to continue to do so until/unless he says something directly to me, in which case, I will DIE.

Embarassing incident #2: I broke the toilet (the tank lid AND the internal mechanisms) and flooded the bathroom at Zane's child care center this morning. While I was trying to rectify the situation with a sink-size plunger and an almost empty role of toilet paper, a teacher knocked on the door. Nuf said. If I had more energy and I didn't think it would be traumatic, I would change child care centers. I am DREADING picking Zane up in about an hour.

Still trying to sell the minivan. Loving the Volvo wagon although I really need to get the code for the stereo and order a manual so I can figure out how to do things like turn on the heat. The good news is that the weather will be 80 degrees all weekend and the Volvo has working AC!!!

I'm feeling a little guilty that I played the MS victim card a couple times this week....or did I? When I couldn't go to the workshop at work and someone told me that my employer would be charged money even if I didn't participate, I told her I had MS and wasn't feeling well.

Then, when a committee at the UU church signed me up to host coffee hour on Sunday (without checking with me first), I said that I could bring food but would have a hard time setting up and cleaning up with Ruby and Zane in tow and, when the committee members (not to be confused with MY committee) insisted that everyone who was assigned needed to fulfill their responsiblity or find a substitute, I said that I would try but that I was starting a new MS drug and wasn't sure I would be at church.

Did I HAVE to use MS in these situations to say "no?" Hmmm. Is finding the way to say "no" another gift of MS?

I want to buy Eat, Pray, Love. Oprah (Ok-yes, I'm laying on the couch watching Oprah on my day off!) is interviewing the author and it sounds like this is an amazing book and right up my alley. Ok-I'm a beat or two (or 36) behind the rest of the reading world, but, hey..... I have MS! :-)

Matt's 12th Birthday

I worked from home today. Missed a workshop. Felt guilty but also felt like I had no choice. I hit a wall and couldn't get up.

MS is like a light switch (not to mix metaphors or anything). Or rather, MS makes ME like a like switch or a light bulb, maybe. (Hey, I'm trying to get a handle on this analogy in real time--cut me some slack!) I can either turn it off myself to conserve electricity or, if I leave my switch on too long, my circuits overload and all the power goes out at the worst time. That was today. Well, last night into today. I ran out of electricity and I had to recharge to get any light at all.

My light is dimming now. The kids are in bed. I put Ruby in my room until I go to bed because she and Zane were keeping each other up. I'm watching Private Practice--not as good as Grey's but the cute acupuncturist and the African American doctor (Is it Tye Diggs?) are fun to watch. I'm going to sign off and go pack lunches and pick out clothes in the ads so I can go to bed right at 10pm.

Happy Birthday, Matt!

I HAVE HAD A HEADACHE FOR 24 HOURS THAT IBUPROFEN, TYLENOL, AND EXCEDRINE CAN'T TOUCH. OW.

Volvo-Driving Insomniac

It's after midnight. I'm exhausted but can't sleep. I have a headache that feels like an elephant is sitting on my head. Optic neuritis? MS? Stress? Too much orange sherbet with dark chocolate chips?

I hate questioning everything. Do my legs hurt because the MS is affecting my motor functioning or because I'm getting old? Does my head ache because I didn't eat well today or because the MS is causing new lesions on my brain? Did I forget the name of a colleague today because I was just forgetful or because the MS is affecting my cognitive functioning? Some of the stuff is clear cut. Like my still not perfect vision in my right eye. I know that's MS. I know the electrical charges up my spine are MS.

I bought a Volvo yesterday! It's a wagon, not a KGB car but it is black and I love it! I still have to get the code for the stereo and/or get a new stereo and I have to get a manual for the car and figure out how to work the heat (the AC is ice cold but winter is coming!), but it is registered and insured (not necessarily a given with my history).

Do the advertisers really think that the people watching Friends at 2:45 are "hot, local, singles looking to chat with other hot, local, singles?" Just wondering...

I got my Rebif (MS Disease Modifying Treatment drug) accessory kit today that includes a travel bag, a syringe pen, an ice pack and a card, telling Airport security that I have MS, that I need continuous treatment, and that I always have to carry pre-filled injections, even on trips abroad. The meds arrive tomorrow but the nurse the pharmaceutical company sends can't come until Monday to show me how to give myself the shots 3x week. I am going to try to get into my PCP's office on Friday to see if someone there (preferably a nurse) can show me how. I could just follow the drawings in the kit but what if I have an allergic reaction or something and I'm all alone? I'm anxious to get started because I want the positive effects (it's supposed to send me into remission rather dramatically if it works). I'm also nervous because it might bring on flu symptoms at the start. Here's a picture of my injector pen:

My lumbar puncture isn't until 9/24. I either have time to forget about it, time to get anxious about it, or time to relax. Hmmmm. I guess it's my choice. For today, I am choosing to relax. Here's a picture of a spinal tap:

I thought Spinal Tap was the name of a band...or was it a pretend band...?

Oh, there's more big news! As I write this, Zane is sleeping in underpants (and hopefully staying dry) for the third night in a row! I walk him to the bathroom before I go to bed (which is hysterical because he pees but doesn't wake up) and he is so proud of himself with dry sheets in the morning!

Oh--I'm thinking of trading the Buick and/or the minivan for either Red Sox playoff tix (on Craigslist Barters) or carpet or housecleaning and laundry services. I'm working on the details. Way to work the MS gift, eh?

I should go to bed but I'm afraid to go in there, lie down and have sleep evade me. Or, what if I do fall asleep and then I'm too exhausted to get out of bed in the morning?

Now it's after 1am and Will and Grace is on. Peace

Rabbit, Rabbit

It's 6:33 a.m. on Monday, October 1. My friend Jill used to say "Rabbit, Rabbit" on the first day of a new month. Do people still do that?

My eyes shot open at 5:55 a.m. and I was out of bed by 6. So weird, this new morning person energy. I mean, I've been one way for 43 years, having my parents/roommates drag my butt out of bed from elementary school through college and even work! I did have a couple years of my 4am radio job and I was almost never late. Maybe this is temporary. I'm not sure if I want it to be...?

I started my day with a racing mind which I tried to give to my higher power, but eventually I just decided to get up and start doing other stuff so my mind wouldn't have some much leash. Hence this posting. I might as well let my mind race in writing for this blog/draft of my book. Lucky, lucky you. :-)

I bought another Volvo yesterday...well, I ARRANGED to buy another Volvo yesterday. I am afraid to post a picture or discuss it as a done deal since I have not handed the guy a check or driven the car away yet. I am turning it over. If it is meant to be, it will be. If it's not, I will probably swear and carry on and eventually find the right car or pimp out the Buick.

I am starting to worry that my MS and my focus on all things MS (in other words, my complete and total self-absorbed obsession with my body, mind, emotions, and spirit) could be making my friendships one-sided. I try to listen and ask about others but, depending on the person and the time and what's going on with me, sometimes I'm more successful than others.

I want to get new glasses, but I don't know what to do about the prescription. Mine are wicked scratched but do I go with my current prescription? I have a "new" prescription around the house somewhere from before the optic neuritis/MS started affecting my vision. Do I get my eyes tested again knowing that my vision is a result of MS lesions on my optic nerve and could be temporary? Too bad you couldn't change lenses daily. Wouldn't that be cool? I'd get up, take a shower and look into a machine that would read my brain, optic nerve, and vision, and then push a button to select thecolor-coordianted frames for the day. Then, zoom, beep, beep, click, like one of Jane Jetson's beauty machines, out would pop my glasses for the day. Maybe I should invent it. Hmmm. There are 400,000 people in the US with MS. I wonder how many have optic neuritis? How many wear glasses, I wonder....?

I need to clean my house before the maid comes. My lovely friend Christina gave me a gift of Merry Maids to come clean my house every other week while I am in this exacerbation/episode of MS. (This fact embarrasses me greatly because I am sure people--including you--will think I am lazy and milking the MS). The first visit was wonderful and horrific. Two women showed up and I immediately felt uncomfortable. They were way too much like me--single moms living on the South Shore. I had planned to stay home and do work but I couldn't handle it. I chattered endlessly and inappropriately ("My friend did this for me because I was diagnosed with an illness but don't worry, it's not catchy!" "Are other people's houses this messy on top of the refrigerator?" etc., etc., etc.) I was really fatigued that day (didn't help that I stayed up ALL NIGHT cleaning so I wasn't functioning at full steam and kept going into a room, forgetting why I was there, etc. Eventually, I left, carrying my homemade ice coffee in my leftover DD cup, out to the car. I got to the car and spilled THE ENTIRE LARGE ice coffee with extra Lactaid skim milk with 2 Splenda down my beige pant leg and into my black leather, slip-on shoe. I got in my car anyway, because how could I possibly go back in while these two women were cleaning my house, and called a couple friends who listening and laughed with me. Eventually, I went to DD, got a new iced coffee, got napkins to dry my feet and pants, and went to Walmart and bought new pants--two pair of different being pants because I didn't have time to try them on. I was gong to meet my new neurologist that day I think. Or maybe it was the 2nd MRI...?

So, this is Merry Maid visit #2 and I will DEFINITELY not be here. I am writing this post and NOT cleaning my house like a mad woman (although I should PROBABLY load the dirty, smelly dishes overflowing from the sink into the dishwasher) so I guess that's progress!

Gotta go get ready for work. Have a nice day. Peace.