Michele's Blog

Saturday, December 31, 2005

It's New Year's Eve!

2006 is only a few minutes away. I hope you're all out there having a great time with people you care about.

2005 has been a year of ominous changes for me, but I had plenty of good times this year, too. I went to Hawaii in January and Ireland in June. I got in shape: I worked out 4 days a week, lost nearly 40 pounds, and had a resting heart rate of 59. I have amazing friends and a sweet family who've rallied around me. Oh, and did I mention that I have a new house, too?

I was handed a bad diagnosis. True. But I have much to hope for. I don't think a cure is around the corner, but treatments continue to improve.

And my little boy has suuuuuch a cute fuzzy haircut, I can't stop rubbing my hands on his head! : D Todd and Bayley went to a New Year's Eve party, I'm quite happy (relieved, actually!) to be home with my heating pad, and life is good.

"I can live with doubt and uncertainty and not knowing. I think it is much more interesting to live not knowing than to have answers that might be wrong." ---Richard Feynman

Happy New Year. ; )

Friday, December 30, 2005

I enrolled Eric in daycare.

Fortunately a nice school* downtown had an opening. I signed him up on Wednesday. I'll take him for his first full day on January 4th.

I'm paying for him to attend full-time, but I'll only take him on Mondays, Wednesdays, and Fridays to start. I think 8:30-3:30 should be about right. I'll give myself the Rebif shots on those days. Since I'm going up to 44 mcgs next week, Eric's being there will help me considerably.

I'll admit it: I feel some guilt about this. But my sense of relief is stronger.

We'll see how it goes.

"Even in a state of crisis, everything is perfect. We make it so by adjusting to things as they are, then uplifting the circumstances with compassion." --Stephanie Russell, Everyday Zen

*Bayley went in, took a look around, and smiled. "I think Eric will have fun here."

Thursday, December 29, 2005

One bleak moment...

...was the moment I saw my MRI.

You know that feeling you have when you see a bad photo of yourself? "Ew... I'll hide this. I definitely look way too chubby in this picture. I can lose weight, though! I can work out. Besides, the angle was bad, I was tired, and what was I thinking when I put on that shirt!" etc, etc.

My MRI films, with their lesions and stripes, were completely exposing. They were obscene. I wanted to take them down from the wall, I wanted to deny that they were mine. Because I couldn't explain them away, I couldn't excuse them, and I couldn't change them by losing weight, working out, putting on more makeup, having lipo or getting a tan.

I saw them and turned into a pillar of salt.

"Once he finds out who he is, what can console him? ...for on Earth Everyone who lives, lives in a dream." --Calderon de la Barca

Wednesday, December 28, 2005

Rainy Wednesday.

Incredible how much water we've been getting here. I guess there's even talk of possible flooding. Yeesh.

On Monday I met another person with Multiple Sclerosis. She's the younger sister of my friend J, and she was visiting J from Seattle. K was diagnosed about 2 1/2 years ago when she was 32. She was lovely. She was wonderful in every way. We talked for an hour. I felt more hopeful after meeting her than I've felt for a long time... she also told me that she spent the first year after her diagnosis crying and afraid. I guess I'm normal in that way.

I don't cry every day anymore, but sometimes it just gets me. So I do what Teri Garr does: I look at the clock, and I tell myself that I can wallow in self-pity for 25 minutes (NEVER in front of my kids, by the way!). After that, times up, no more. It works. I get to have my cake and eat it too.

I had another Rebif shot yesterday. I gave it to myself. I felt fine until I was in the grocery store at 4:30, and then I was ready to fall over from exhaustion. The fatigue comes over me like a black cloud. I can't go forward, I can't go back. Sometimes I struggle to remember what it is I'm doing.

I went home. Todd came home about an hour later. I took a nap. By the time our friends came over at 8:00 pm for cookies and a movie (Wallace & Gromit's "A Close Shave"), I felt much better.

Today I can't say I feel great. Monday I felt great, though.

I took Eric to Great Clips for his first real haircut this afternoon! He looks adorable.

Bayley is doing Tennis Camp this week. And she loves her new video game. I try to balance out her sitting-in-front-of-The-Box time with physical activity.

How do you know if you're a good mother? When do they tell you? What if I do everything and everything I do is still wrong?

When is my cure coming? If not now, if not for me, can in be here in time for my kids?

Monday, December 26, 2005

I had a great Christmas, Rebif & all.

Todd gave me a shot in the morning and then we unwrapped presents! Bayley & Eric had fun. Bayley's main present was a videogame. Eric's was a train set, although he plays more with the King Kong puppet and his new big T-rex (they fight quite a bit, then they become friends, then it starts all over again).

Our big family present to ourselves was a 42-inch flat-screen plasma TV. Yeah. Now we can watch South Park the way it was meant to be seen. ; )

Later that day we went to the H's house for dinner. They had grilled the turkey somehow... it was seriously the tastiest turkey of all time. Whoa. They have three little girls, so Eric & Bayley have fun at their house.

But at about 7 pm my energy level went from 6 to 0! So we went home. I was in bed by 8. The muscle aches & chills & headache woke me up at about 1 am... I took some Tylenol & Celebrex. Then I went back to bed.

Today I feel pretty good & energetic. Unfortunately the vertigo is still intense.

Now I need to put this kid to bed. He's not looking sleepy at all. Oy.

Saturday, December 24, 2005

22 mcgs = Ouch, ouch, ouch.

Todd gave the shot to me yesterday morning around 8:25. For the first coupla hours I felt fine. No side effects! I was feeling pretty groovy.

Around noon I started to feel it... aches... headache... general total misery. By 1:30 pm I was longing for oblivion. So I stopped being brave, cried "Uncle," and admitted to myself and Todd that Rebif was in fact kicking me to the curb. He made me take some Tylenol and Celebrex. The drugs took a few hours for to work, but by about 6 pm I felt okay.

Yesterday we spent the afternoon & evening at our friends' house. They fixed a great holiday dinner--we brought a salad and the mashed potatoes--and Bayley & Eric had fun playing with their kids, K & M. They have lots of train toys, which Eric is really into. We stayed until Eric started "melting down" around 7:30.

Mostly I just sat in a chair & watched the Eric & M play... I felt kinda useless because I was pooped. My left hand is numb, chopping and mincing seem beyond me at this point, so I didn't participate much in the food prep--not that I ever really did, ever in my life, even before MS got me. I like holiday gatherings because I simply like being around people. I like it when they talk to each other, and I can just listen. I'm not much of a contributor in most social situations these days--I don't like to talk. I have less charisma than a potted plant. I just want to be there, in my corner, with my book.

Anyway, I'm rambling now! I can't believe it's Christmas Eve. I think a South Park Christmas Marathon starts tonight...kewell... I have to have another shot tomorrow morning, but I'll take the Tylenol beforehand.

Thursday, December 22, 2005

Neuro appt. went well.

I asked him everything I meant to ask him. I took my list.

I'm so nervous tonight. Tomorrow morning I go way up on my Rebif dose: from 8 to 22 mcgs. I think Todd will have to give me the shot.

I'm very nervous. The side effects aren't gonna be pretty. Argh. Really, though, what are my choices? What choice do I have? When was the last time I felt well? What wouldn't I do just to feel well again? Yeah, I'd do this. I'll do this. I just have to hang on.

Wednesday, December 21, 2005

IQ test done!

The woman who conducted my exam said that I did very well; she said I was one of the best she'd ever tested. Kewell. Still... I wish I coulda used a calculator on the math part.

The only word I missed on the vocabulary part was synecdoche. Do you know what it means? Well, do ya, punk? I didn't think so. ; )

My left hand is too numb. My vertigo is slightly better today, though... and my fatigue is muuuuuuuch better.

I have a regular check-up with my neurologist tomorrow morning. What should I ask him? I need to type out a list of my concerns & questions. Right after I lasso my toddler and put him to bed...

Tuesday, December 20, 2005

Christmas Shopping Almost Done

It's a jungle out there. I still have a few more presents to get... I might even have to go back to Barnes & Noble *shudder*.

This morning I gave myself the last of the "baby" shots of Rebif. Friday morning I'll give myself a more serious dose... I go from 8.8 mcgs to 22 mcgs. The side effects are supposed to be much worse. I am nervous. I've been lucky so far. Let's hope that my luck holds. For the sake of my brain, I need to be able to accomodate to the higher dose!

Bayley & Todd have been decorating the house this evening for Christmas. They love doing this. I am more of a wet blanket when it comes to decorating, because I know I'm the one who has to pack it all away when the holiday season is over... grumble... murmur... ; )

Tomorrow is part #2 of my neuropsyche test. I'll spend 4 hours in a room with someone who'll try to assess my brain function as I'm asked question after question after question after question. I'll have an IQ test. I don't even want to know what my IQ is anymore... there's no possibility of it being as high as it used to be.

Hey, I need to put Eric to bed! Where does he get his energy?

Monday, December 19, 2005

It's windy out there!

I feel so safe and cozy in here though.

We just got back from dinner at a friend's house. They're great company. Plus, they have four boys, so Eric plays with all their toys and feels like he's in Boy Heaven!

I went to physical therapy @ 12:45. Basically, my therapist fired me because she doesn't think what she's doing is helping me at all. In fact, she tells me there's a good chance she could be making it worse. So... it's just me and my vertigo again. I wonder what my neurologist is going to say about that.

I also went to three daycare facilities this afternoon. Two of the places had immediate spaces available, but it made me sad to think of Eric there. So I think I will put his name on the waiting list for the place I liked and hope he gets in. : / I'm nervous that he might not get in for a while... and I'll need him to be there soon, because I start increasing my Rebif dose on Friday. And by January I'll be on a pretty big dose, and I'll need as much help as I can get.

Two of my brothers called me today to check up. They're funny. "Why couldn't they have picked a better name for that drug?" said R. "Injecting yourself with something called 'interferon' makes it sound like you're being taken over by aliens. The interferons are coming!" Lol... Well, maybe you had to be there.

I think my vertigo and fatigue are returning to their pre-flu levels. Which is a good thing. But I would literally give a limb to have it go away permanently.

Sunday, December 18, 2005

Todd's band played last night...

...at a Christmas party for one of the hospitals. All of the members of this garage-rock band are also doctors. They play covers of oldies like "Jumpin' Jack Flash" & "Mustang Sally" as well as newer hits like "Are You Gonna Be My Girl" and "Short Skirt Long Jacket".

'Twas a fun party. I stayed mostly in a back room that had big windows where I could see & hear everything that was going on. I was with three friends... we had a good time checking people out and being the fashion police. I wasn't too tired, but my balance is still a joke. My one attempt at dancing didn't go over very well. : / Still. I was glad I to be there. The party was my first "appearance" at a large social event since my diagnosis. I think I did okay; I fielded a few condolences. People are very kind.

The only awkward moment I had was towards the end of the party. The sound engineer for Todd's band asked me what it was I'd been diagnosed with--he didn't understand what multiple sclerosis meant, who does really?--and before I could explain it to him a woman next to him poked him repeatedly and said, "Remember? Remember? She's the one I was telling you about!" ....which weirded me out a little bit because a) I'd never seen her before and b) just what had she been telling him?.... Hmmm. Oh well.

We spent most of this morning hanging out at our friend's house. Eric played with their son, Bayley played with their daughter, K. Todd will be taking the Bayley & K to see the Narnia movie later today. They might be there already, actually. I've heard good things about that movie, so I hope they have a good time.

I gave myself another Rebif shot this morning. I'm a little bit sore, but other than that no side effects.

Vertigo still mind-blowing: 8 out of 10. Fatigue level not as bad: 5 out of 10. Left hand definitely more weak & numb: 5 out of 10.

Someone, someone, someone please find a cure.

Friday, December 16, 2005


Hard day. Walking in a straight line takes concentration. Walking through a parking lot is almost terrifying.

Tried to get some Christmas shopping done. I left the house around 12:15, tried to pace myself, thought I was doing a fairly good job. But by 3:30 I was nearly insane. I was so confused. I went to the post office to mail presents home to my family in Utah, and I couldn't quite remember the address... the address where I lived from the age of 8 to 17. And I actually misspelled my maiden name. I was completely, I can't explain it, tired, confused, wires crossed, where's this? where's that? I know the people at the post office were watching me carefully.

I went home and cried.

Today for the first time I am considering putting Eric in daycare, at least part-time. He needs to play with other children. I can't keep up with him. It breaks my heart. I feel like a failure.

On the plus side: Rebif injection this morning at 6:30, virtually no side effects whatsoever. That's a big deal.

I'm still blaming my vertigo/fatigue exacerbation on the flu last week, fwiw.

Thursday, December 15, 2005

Veeeerrrry tiiirrrred today.

I am exhausted. I had energy from about 8 am to 10:00 am, and then it was like somebody pulled the plug on me. I want go to bed, but unfortunately Eric's bedtime is three hours away, and he's got plenty of energy left. Gotta keep going as long as he does.

Wednesday, December 14, 2005

I feel good today.

I haven't felt this good since before I came down with the flu. Nice.

The vertigo thing is still icky. But I ran some errands: delivered some flowers to a friend, went to see my therapist, went to the annual Cookie Party held by the association I'm in. My kids had fun. I felt like I had enough energy to do everything, just not quite enough physical "balance" to feel completely at ease. I think I'm favoring my left leg now, but you can't really tell most of the time.

We're trying out a new babysitter for Eric. Today was her first day. It's hard to make Eric happy, he likes to have the same babysitters--now we've got three, and I think it's just a bit too much for him to adjust to them all. But what else can I do? I think it will all work out eventually. We'll find some sort of routine.

Peace out. : )

Tuesday, December 13, 2005

Gave myself the Rebif shot today. : )

I did it! What a relief. I can do it. I can give myself an injection. Whew. I just couldn't give myself that first injection on Thursday, I had to have Todd do it, but today I went ahead and did it myself. So I feel like I've conquered something. Give me a gold star.

Isn't it weird? I'm an RN. I've given other people shots, no problem. But when I had to give myself a shot last week, I just froze up. Hey all you diabetics out there, I have new respect for you. Y'all give yourselves injections several times a day. Amazing. May they find cures for all of us soon.

Today I went to physical therapy, only to have the therapist tell me to go home. I was too dizzy already to do any of the exercises. I feel like I let her down.

Eric went to preschool today. The teacher's assistant says he's participating more with the group now. He's the youngest one in the class--the next oldest pupil is at least four months older than he is--so he doesn't quite have the focus or the attention span that the other students have. But he loves school. And I hear him singing the songs that he learns there. Hearing him sing is about the cutest thing, ever. He has so much energy.

Bayley still hasn't gotten the flu that took the rest of us down last week. Amazing. That girl is carved out of a rock.

Speaking of rocks, I don't know what I'd do without my friends. They take Bayley to school, they bring her home, they take her to piano lessons, they bring her home... they bring me food... they call me to make sure I'm alive and they give me uplifting jewelry and funny books. I have been so amazed at the level of support I've gotten since all this started. I have to put in a big thank-you here. Thanks guys. I hope some day I can do the same for you.

I spent about three hours going through bills... we have quite a few medical bills, as you can imagine. : ) But I think I've gotten them under control.

Todd took us out for dinner tonight. Eric had to go in his dragon costume. Picture him sitting in the booth at the Mexican restaurant, occasionally saying "Rawr!" to people who pass by. Yup, that's my boy.

Monday, December 12, 2005

She was great!

Bayley sang her part perfectly, according to Todd and my friends who attended the Christmas program. How cool is that! I should be able to see her performance on DVD soon because someone recorded it.

I went to the neuropsyche test today. I think I did well on some parts, not on others...but we'll see. I have to go back next week for four more glorious, fun-filled hours of testing.

Before the computer tests began, I talked with the psychotherapist for over an hour. I told him that I was in his office because I had been diagnosed with multiple sclerosis, and I wanted to be proactive about my mental health--I wanted the tests to be run as sort of a baseline, so that if my mental functions deteriorate significantly we'll be able to quantify the changes. I told him that most of my worrying & anxiety were related to my diagnosis. But...I felt like he wasted time searching for some OTHER cause for my anxiety & concerns.

Having MS isn't enough? Let HIM get this, let his T-cells start to eat his brain and let's see how HE feels. I think my despair at this point is a reasonable response. I have an incurable disease. Current therapies are only marginally effective, and they have miserable side effects... I woke up with a whopper of a headache again; do I have Rebif to thank for it? Researchers don't know what causes MS. They aren't close to a cure. And it's genetic--I may have passed this wretched brain-erasing disease to two of the people I care most about: my kids. So yeah, I'm a little bummed out.

My vertigo was the worst it has ever been today. I am to the point of nausea. I blame the flu and the fever.

Eric was in a great mood today. He discovered the joy of Rice Krispies Cereal with milk. He's also very into King Kong--I gave him some little plastic animals, and he was thrilled because one of them was a gorilla.

Todd had the day off, so he was able to get some Christmas shopping done. He'll have a busy day tomorrow.

Sunday, December 11, 2005


No, it's not a radio station--that's how high my fever got last night. I'ml wiped out today, but I'm not nearly as miserable as yesterday. My vertigo is the worst it's ever been, though. I'm on the verge of nausea.

Todd's working today; he left around 7:30. He did manage to trade away a few hours in the afternoon so he can take Bayley to school. The Christmas program is today. She's in a play--A Christmas Carol--and she has her own little solo and everything. I wish I could be there, but even if I weren't getting over the flu it's just not the place to take a high-energy three year-old like Eric.

I'm going to take my second Rebif shot today. Not sure when, though. I need to take it soon because I want to be at my very best tomorrow: I have a neuropsyche evaluation that runs from 10:45-3:00 pm. I need to be well-rested, no headache.

Saturday, December 10, 2005

I've got the flu today.

Not feeling so good right now. Started with being totally exhausted last night--pretty bad fatigue, even for me. Tossed & turned, had a fever after 2 am. Joint achiness. Took some Tylenol. It helped.

Todd took Eric on a walk 20 minutes ago--that kid has so much energy; he needs to get out of the house. When he does, he just runs and runs. Eric's zippiness lifts me up. Life does go on.

Good news: I've actually started the Rebif. Todd gave me my first injection Thursday night at 11 pm. Other than developing a major headache, no side effects. Of course, I only took 8.8 mcgs; I'll be titrating up to 44 mcgs over the next month.

I feel terrible. I'm going back to bed.

Wednesday, December 07, 2005

Not a bad day.

My husband feels much better today; he actually went to work. Crazy that. He's still taking ibuprofen, but it looks like it was a mild kind of flu after all. *sigh of relief*

I took Eric to Jitterbugz this morning; we met some friends there. (Jitterbugz is an indoor playground geared towards the toddler set.) Eric found a bird suit in the costume pile and put it on. He loved having wings! He flew around for over an hour. Gosh, he's so cute. He turned 3 on Saturday. He's big, tall, but so gentle with the littler kids.

I went to my daughter's school this afternoon for an awards assembly. They presented her with The Reading Award for the Fifth Grade. I was a very proud parent. Bayley loves to read. Her teacher tells me that she needs to focus more on non-fiction now, so I am trying to find books that she'll be interested in--I got her a book about cockatiels.

My vertigo is still a huge problem for me. Walking from my car to the gym where the assembly was held was a challenge, even though it was only about 200 yards. The sidewalk was uneven, it was partially covered by wet & slippery leaves, and sometimes when people passed by me they bumped me just a little bit. I had to focus, focus, focus not to fall over. It's like I'm playing that game where I'm trying to walk across a river on a revolving log... I really hate feeling this way but I know things could be worse.

In fact, some of my symptoms do seem better today. The numbness and tingling in my left hand is subsiding. My right leg feels better, too--like it's more "there" than it was just a week ago. Last week when my physical therapist first evaluated me my right leg was definitely weaker and slower than my left. I wonder if it still is?

Tomorrow night will be my first injection of Rebif. I know I keep putting it off, but I really think I'll do it tomorrow night.

Tuesday, December 06, 2005

Rebif? Not Yet!

I was supposed to start my Rebif today. Got the meds delivered this afternoon & everything! I'm nervous but excited, too. Nervous because of the side effects, excited because this drug could possibly slow the progress of my disease.

Buuuuuut... I didn't start today because my husband is very sick. Seems like he has the flu. He went to work at 8:00 this morning, feelin' fine, but by 10:00 he had a fever, chills, and was aching all over. He came home this afternoon and he looked bad. I haven't seen him this sick in years! The last time he called in "sick" to work was 1999.

So I decided to put off the Rebif thing for a few more days... one of the major effects of Rebif is flu-like symptoms. We can't have BOTH of us down & out, who would take care of the kids? My daughter could make her own way, but my son needs at least one of us to be functional.

I'm worried I'll get the flu now. This scares me. Flu makes MS much worse, and I also just finished with a course of IV Solumedrol last month w/a prednisone taper. *sigh* We all need a vacation or something, don't we? Lol.

I went to physical therapy today. I hope it helps me eventually, but I just don't know. My vertigo is pretty bad, and I'm feeling like it's permanent now. I also went to "mental" therapy today, and I do think that helps. I started this therapy about a month ago, because I figured that I needed someone with a clear & professional perspective to help me sort things out. She's been great. She helps me organize, prioritize, etc. More on that later. Time for bed!

Monday, December 05, 2005

September 28, 2005

That was the day I was diagnosed with Multiple Sclerosis. It was a Wednesday.

I didn't see it coming.

Have you ever seen The Sixth Sense? Remember that moment at the end of the movie when Bruce Willis realizes he's actually been dead the whole time? That's the level of shock I felt. Shock and fear. Everything in my life changed in that instant, but like in The Sixth Sense--my diagnosis didn't just change my future--it changed my past as well.

...rewind, replay, what was that?...rewind, replay, rewind, replay...

Sunday, December 04, 2005


This is my very first post on my blog. Isn't it exciting? Well, okay--it's only exciting if you don't have anything else to do. Still. I need someplace to record my life (or what remains of it, considering my diagnosis), and why not a blog?

Here I am with my kids in September 2005, just a few weeks before my diagnosis: