Michele's Blog

Wednesday, February 28, 2007

I never said I was a little ray of sunshine.

That last post hurt to write. It took all my energy; the black depression tsunami hits me and I go under.

I still cry my eyes out. I'm alone way, way too much of the time; many of my trusted friends are long gone.

There are a few people I can confide in, but even those relationships--well--I hear the clock ticking.

Okay, ya know, I meant to write something cheerful today and that just ain't happening! So I'm gonna stop. Oh my heck, my kids sure are cute though. That's a happy thought.

I'll have a bowl of granola and watch an episode of Scrubs. Enough of this!

Monday, February 26, 2007


I am useless.
I will never have a happy day again. I will never be completely understood, accepted, and loved--loved madly, completely, ecstatically.
I am disposable.
I want to die.

Saturday, February 24, 2007

Welcome to Withdrawal Hell!

Since the Tysabri has apparently kicked most of my headache to the curb--how on earth it did that I don't know, but I'm happy-- I'm doing my absolute best to taper down from all that Dilaudid I've been on.

Withdrawing from this stuff really hurts. From addictionwithdrawal.com:

Withdrawal symptoms from Dilaudid can occur four to five hours after the last dose. Dilaudid withdrawal symptoms usually last 7 to 10 days.

And what are those symptoms? From drugabusehelp.com:

Dilaudid withdrawal symptoms can be severe and include: anxiety, insomnia, profuse sweating, muscle spasms, chills, shivering, restlessness, yawning, disturbed sleep, irritability, anxiety, weakness, twitching and spasms of muscles, restless legs, nausea, anorexia, vomiting, intestinal spasm, diarrhea, repetitive sneezing, hot and cold flashes, severe back, leg and abdominals pains and cramps. Frequently, an increase in body temperature, blood pressure, respiratory and heart rate may be present.

I also hallucinate, usually from 3 am to 7 am every morning. That's the scariest part for me.

In November, I took as much as 32 mg of Dilaudid a day. Since Dilaudid is approximately 8 times more potent on a milligram basis than Morphine, that translates to...256 mg of Morphine a day.

Right now I'm down to 12 mg of Dilaudid. Someone out there give me a medal for this...

What else... my left arm is perfecto. No numbness or tingling anywhere. My vertigo is also not so bad, either.

Friday, February 09, 2007

Me & Hubby in Oahu

We had a lovely dinner on the beach. I think this was January 3rd, 2007.

Thursday, February 08, 2007

Our Oahu Vacation

We went to Oahu for Christmas break. Here are a few photos.

Wednesday, February 07, 2007

Happy Birthday, Jason!

Just putting out a big congrats to my little brother who turns 30 today.

Jason, dude, you are OLD. You probably can't read this without glasses. I'm proud of you and everything--you aren't in prison or rehab. But you should know that just because you are a doctor with a beautiful family, you are OLD. Next up? FAT. You are going to be old and fat.

I love you, Jase.

Let's Update This Thang!

I'm still alive and morbidly depressed here in Oregon. ; )

I kept the Rebif going, never missing an injection, until my new neuro (Dr. Bourdette at OHSU) told me to ease up for a while because the side effects were painful.

So... I stopped the Rebif in July, and then... well... I'd like to say the headache disappeared, but it didn't. If anything, it seemed to get worse. Constant head pain can drive you mad. I tried Topamax, Lyrica, and Cymbalta to nuke the headache; nothing worked. What does work is Dilaudid. I know that's one of those opiates that should hardly ever be used, but it works.

My beloved grandmother passed away unexpectedly in March of 2006. That sent most of our family into a state of bereavement and shock. We depended on her emotionally. She was from Wyoming, and she was so tough, so fiercely loyal, and so smart that I was afraid of her even though she was only 5'2" and 100 pounds! Her passing ripped a big hole in our hearts and lives.

Grandpa, her husband, passed away a few months later--in November of 2006. He was a three-star general in the Air Force, but without his sweetie his health declined. We gathered around again for another goodbye...and a funeral that included fighter jets overhead in formation, and the gun salute.

We are all so fragile and precious. Rest in peace, Grandma and Grandpa.

I'm on Tysabri now for my MS. Yup, I'm on the big T. I had my first infusion almost two days ago. I feel better! I am not quite so fatigued. 'Bout time.

The kids: Eric is 4, and beautiful. And potty trained! Yes! No more diapers, he is a big boy! Bayley is 11 and still my beautiful, kind girl. She's tall...! She started the sixth grade at a private college prep school and is doing very well.

And last but not least, my husband: He deserves much of the credit for keeping us all together and safe this year. He is amazing, my rock, and I have had to rely on him more this year than I ever thought I'd have to for emotional support. When you're contemplating the uselessness of your life, there's nothing quite like having someone to hold you and say, "I love you. Stay with me. I love you."

Thursday, March 16, 2006

Feeling more in control at the moment.

Earlier today I felt like the world was going to end. I don't know why. I thought about checking myself in.

But I got some rest today. I feel better. I love my nannies.

And my lab results came back; they're all perfect. Great liver, great thyroid, no antibodies to the Rebif.

Wednesday, March 15, 2006

So tired.

Yesterday I had my labs drawn; they'll tell me how my liver is handling the Rebif. I think the results will be in sometime today.

Annnd--this is a good thing--I now have a Primary Care Provider.

I also managed to get an appointment with her yesterday. How did I manage to get in to see her so soon, you might ask? Weeeeellll... the secretary asked what I wanted to come in for, and I said, "Depression."

"Oh." She seemed to suddenly get very serious and I heard lots of typing in the background.


"I think she's got a 2:00 available."

"I'll be there."

"You'll like her. She's good."

I think I owe that secretary flowers or something. I didn't name drop, cry, threaten, anything; and she got me in.

So then I went to the appointment. I took a little typed-up medical history with me... my list of doctors and all the stuff I'm taking. Rebif, Adderall, Xanax, Klonopin, Lunesta, Percocet (10/625's), Allergy shots, Multivitamin, Benadryl, Tylenol, Celebrex.

Got on the scale. Lost five pounds, whoops... wasn't trying to do that. I thought I was eating more.

After I met the medical assistant, I met my new physician. She cut to the chase immediately. I liked her right away for it. And here's something I learned... You can think about suicide, but telling someone that you have an actual plan--and telling them some of the details of that plan--gets you admitted to the psychiatric ward. I learn something new every day.

Of course I have a plan. Duh! I think it would be stupid NOT to have a plan in my situation. I have a plan, it's a pretty good plan--ya gotta be stone cold dead way before the paramedics arrive--and I do not plan on never having a plan. I have MS, and because I am always symptomatic I will know exactly where the exit door is, and I will always sit very, very close to it. I'm not stupid.

It's like this... being diagnosed with Multiple Sclerosis is like being locked in a dim room with a very, very large spider. Every so often that spider gets hungry, so it comes over and poisons you... sickens you... paralyzes you a little here and there. It doesn't kill you off entirely, it keeps you somewhere between life and death so that it can continue to grow while you get weaker and weaker.

The spider is a loathsome, filthy thing. It doesn't have just eight bulbous eyes, or eight legs... it has many more. Some of those eyes are always watching me, even when I sleep. For long hours it appears completely frozen in its corner. Is it dead? I move, and it twitches. It is hideous. I can smell it with my eyes closed.

The room has one window. People can come and wave at me, and talk to me, but nobody sees the spider except me. So trying to point it out to them, it's... well... it makes me sound crazy.

I don't want to sound crazy, so I make small talk with the occasional visitor. Most of the time, I'm alone. The only person in the room is me.

So HOW is it selfish of me to want to have a way out? I would never, never, ask someone else to live this way. From all I can gather, I shouldn't end my life because somehow that will hurt *them*. My own continual suffering and fear seems not to matter. I don't want to hurt anyone else, I just need my own hurting to stop.

Maybe when they're locked up with their own spider they'll understand.

I got put on Zoloft.

I also had to promise not to hurt myself until my next appointment (fine) which is TODAY (interesting) at 5:30.

Monday, March 13, 2006

I finally had the courage to ask for help today.

And I was completely rebuffed.

I haven't been wanting to say, "Hey, I'm depressed" to anyone, out loud. But at this point I do think I'm depressed.

So, I called my neurologist. I know that depression is very common in multiple sclerosis, and very VERY common with people who take interferons, so I figured he'd have a handle on what would work for me. That, and he also knows the other meds I'm on (Rebif, adderall, etc) and would know best how to avoid any weird interactions. I called my neurologist and left a message with his nurse.

After waiting all day for an answer, I got a call from his nurse around 4:30 pm. "He doesn't write prescriptions for things like depression," she told me. "You need to call your primary care provider."

There ya go.

I don't have a primary care provider.

And whaddya wanna bet that when I manage to see one, he or she will look at my medical history and say--"I don't know what you need. Why don't you ask your neurologist?"

Sunday, March 12, 2006

"Romeo, Romeo... Wherefore art thou Romeo?"

This famous line is often misquoted or misunderstood. Juliet is not asking where Romeo is, she's wondering why his name is Romeo.

Bad vertigo day.

Friday, March 10, 2006


Good days, bad days. I have no control anymore. Everything is random. Nothing matters, nothing works. The spinning. I don't care what's causing it-- and I think the allergy hypothesis is bullshit.

The FDA is bringing Tysabri back. I know what the risks are. 1 in 500 of PML. I'm ready. I would rather not live than live this way. I don't want my life.

I'll get everything lined up first. Living will/estate stuff is started, but there are some details to be worked on; PML is a horror.

For this to have happened to me? What did I do, what did I do?

Thursday, March 09, 2006

So... I should be PUT DOWN?

I don't usually post twice in the same day, but this was too funny.

I picked Bayley & Em up from school a few minutes ago. (Em is Bayley's friend). On the way home we talked about the upcoming fundraiser for the school. It's an auction. One of the items up for bidding is a basket filled with different kinds of gourmet coffee beans.

"My mom would really like that basket, because she really loves coffee!" Bayley said.

"My mom wouldn't, because she's trying to quit coffee," Em said.

I then explained to both of them that I've actually been trying to quit drinking so much coffee, too. Although coffee is good for people with gallbladder problems (which I have), it also raises the levels of inflammatory chemicals in the blood of people who drink it. You can read more about it here.

Em's mom has rheumatoid arthritis and I have MS, so we both have an interest in keeping our immune systems as quiet as possible. We try not to consume substances that might aggravate whatever-the-heck-it-is we have. I tried to explain this to the girls, but I guess in the process I made it seem like my disease (MS) and Em's mom's disease (RA) aren't so different...really...

"But Mom, what you have is worse than what she has," Bayley said.

"Well, yeah, most people tend to agree with you," I conceded.

"Because YOUR immune cells are attacking your BRAIN, not just your hands or your feet or something. That's a lot worse, Mom."

"I know. It's worse." OKAY, okay, it's worse. Given the choice, I know what most people would rather have.

And then the two girls started talking about friends they knew who had to put down various pets because those pets had certain illnesses. After a few minutes of listening to the particulars of why Fido and Morris and Splooshie had been euthanized, flushed, or otherwise put out of their misery--I said, "Wait a minute here! How did we go from talking about having sick parents to putting down pets? Are you kids trying to tell me that I should be put down already?"

We were all cracking up. Maybe you had to be there. I know it sounds like the conversation was a wee bit on the morbid side, but in the end it was quite funny. As punishment, I made my daughter hold still while I took her picture with my camera phone. (Note her attitude: 23% guilt, 32% awareness of cuteness, and 45% unrepentant glee at having gotten her mother's goat.)

Just to be fair, here's a camera-phone photo I took of myself a few minutes ago. No make-up, completely unaltered photograph. Attitude? 100% self-conscious. Enjoy.
He who believes is happy. He who knows is wise.
--Bulgarian proverb

Speaking of Calvin & Hobbes...

...this is one of my favorites. Click on it so you can make it large enough to read Calvin's, uh, "poem":

My husband flew back to Salt Lake City last week for a few days to attend a Vocal Point reunion at BYU. Vocal Point is a 9-man acapella group; Todd was one of the original members. He was inducted into their Hall of Fame on Saturday. Not too shabby.

I flew my mom up from SLC to keep me company while he was gone. We had a great time. We cooked and cooked and cooked. Now I have two freezers filled with dinners that I can instantly heat up whenever I'm feeling tired.

Eric... *sigh* what can I say? Cute, but will he ever be potty trained? I'm bribing him with gummy worms now.

Bayley's piano & tennis skills are coming along well. Curiously enough, so are her video gaming skills... she wants to be a video game designer/developer when she grows up.

Sunday, February 26, 2006

Ya know, I really like Calvin and Hobbes.

That Watterson guy really cheers me up.

I feel much better tonight than I felt last night. Woke up dizzy, but I'm slowing down.

Also worth mentioning: Todd admitted me to his pain clinic at the hospital on Friday (before the party, of course). He gave me some steroid injections; my left sacroiliac has been hurting for the past 3+ years. And now-- even though I have the munchies (thanks to the steroids), my SI joint feels great today.

I had fun last night with our pizza-and-a-movie friends...except...I realized once I got home that the big flannel pants I had on had a big tear in the crotch. Arrrgggh! I'm going to call my friend tomorrow and ask if anyone noticed. If anyone did, I guess I have a few phone calls to make. *sigh* Just one more embarrassing moment to add to my list of Lifetime Achievements in the Field of Self-Humiliation. Great, great, just brilliant, ack.

And, oh, just for kicks, my older brother used to think he was Captain Caveman back when we were growing up. Heh. If any of you remember this cartoon character, you're showing your age!

Saturday, February 25, 2006

Sicker than a dog today.

Worst vertigo/nausea day ever. Most of day spent on couch.

I feel like I'm going to throw up.

Party last night fun.

Going to friends' house in an hour. I'll spend most of the evening curled up in a ball on their sofa, but they're the understanding types.

Friday, February 24, 2006

Had a great day yesterday.

The morning started off a little rough because I didn't take my Adderall. I had an appointment with my neuro and I wanted him to see me "Adderall-free". Maaaaan... I looked bad. The appointment went very well in general. Todd was there, and my neurologist gave me plenty of time to vent my concerns. He told me that taking Adderall is not something I should feel ashamed of. But I do. I am planning on getting away from it somehow. I am plotting my escape. Bwaaahaa haa haa!

Anyway, here's the point of my post today: there were 10-minute stretches of time yesterday when I DID NOT FEEL DIZZY. Alert Matt Drudge. Call the President. Hallelujah. Wow. I was me again, the "me" I remember from last year. I was on solid ground, speaking quickly, vicious confidence back.

I took Eric on a field trip with his preschool class this morning. We were supposed to go to a museum, but it was too crowded so the teacher decided to take the kids to a park instead. Eric ran in the sun with a herd of other three year-olds for two hours. On the surface it was a chaotic scene, but on a deeper level it was very peaceful: this is the way kids are supposed to be.

I had the spins the whole time (I retched towards the end of the last hour), but I stuck it out and we made it home alive. And even though today I'm back on the vertigo un-merry-go-round, I'm hopeful. I might really be on the mend. Maybe the allergy shots & Benadryl are working? Maybe the Rebif is helping? Maybe something rhymes with orange? I don't know. Stay tuned.

Speaking of Rebif, I'll have some blood drawn Monday. My neuro has to make sure the Rebif isn't damaging my liver or thyroid; it's the standard check-up for every person on this drug. I might also have a low WBC so that'll be checked too. Ahhhh... Isn't it precious, boys and girls? What a heart-warming joy it is to be on a drug that could fry my liver at any instant! : P /sarcasm

I hope all the results look good, because... although I whine and moan... I don't want to not be on Rebif. The shots haven't been easy. True. But I am completely committed to the fight. I am standing my ground. I Am Eowyn:

'Come not between the Nazgûl and his prey! Or he will not slay thee in thy turn. He will bear thee away to the houses of lamentation, beyond all darkness, where thy flesh shall be devoured, and thy shrivelled mind be left naked to the Lidless Eye.'

A sword rang as it was drawn. 'Do what you will; but I will hinder it, if I may.'

'Hinder me? Thou fool. No living man may hinder me!'

Then Merry heard of all sounds in that hour the strangest. It seemed that Dernhelm laughed, and the clear voice was like the ring of steel. 'But no living man am I! You look upon a woman. Éowyn I am, Éomund's daughter. You stand between me and my lord and kin. Begone, if you be not deathless! For living or dark undead, I will smite you, if you touch him.'

--The Lord of the Rings: The Return of the King; book five; chapter VI: The Battle of the Pelennor Fields

Todd is working in the pain clinic today. He'll be busy. Tonight we're going to a party for some of the docs who are retiring.

Bayley went to school this morning in a quiet mood. She told me her head and throat hurt, so I think she's coming down with something. I gave her some Motrin and Tylenol. I haven't heard anything from the school yet...

Okay, I have GOT to go. Here's a picture of Eric on a horse. It was taken in October 2005.

Govern a family as you would cook a small fish - very gently.--Confucius

Monday, February 20, 2006

Eric was fine!

He woke up this morning before I did. He had great energy all day long; Todd took him to the toy store and bought a humpback whale toy for him. That kid and his love for sea life! The potty-training thing doesn't seem to be progressing very quickly anymore, though. Patience... patience...

Newsflash (uh, not!): kids depress parents. You can read about it here. From the article:

"Society tries to tell us parenthood is the greatest fulfillment of all times," Jeffers tells WebMD. "That is not true for a majority of people. One can find wonderful things about having children. But people are not talking about the negative effect it has on your life. And it is very hard on relationships..."

"You lose your peace of mind, your extra money, your privacy, and on and on and on," Jeffers says. "The worst part of it all is how much you love them, because you worry a lot and you have to keep learning to let go and let go and let go."

For some reason this article cracks me up... I mean, what, do most people not already know this? And yet we have children anyway. Why? Is it guilt? Do we do it because we're "supposed" to? Because it's the next thing on the agenda? Because our friends are having them? Because the clock is ticking?

I'm feeling relatively good today. I went to the gym.

Sunday, February 19, 2006

Sick Day for Eric/ Does Aluminum Cause MS?

By lunch I noticed he hadn't had a thing to drink and only a small yogurt to eat. And he wasn't racing around the house at lightspeed in his usual way. I knew something was up, but getting Eric to talk is difficult.

"Eric, do you have an owwie?" He shook his head.

He shook his head, but he wanted me to hold him and read his favorite dinosaur book... So I held him all afternoon and read that book over and over and over and over. Finally by 4:00 pm I could start to feel a fever... not much, just a viral-esque fever. I tried to get him to drink. He cried when he swallowed. Then he said, "Kiss it, Mommy, kiss it! Owwie," and he opened his mouth. Truly a cute and pathetic scene. "Is the owwie in your mouth?" I asked. He nodded. Yes, I tried to kiss the owwie. ; /

So... he must have a sore throat. If he wakes up febrile in the morning I'll take him in.

Interesting news about multiple sclerosis and aluminum from the UK:

People with the relapsing-remitting form of the disease were found to have very high levels of aluminium - up to 40 times those seen in the group who did not have MS.

Do they make still make soda cans with aluminum? I stopped drinking all soda drinks about 2 months ago. I wonder what other sources of aluminum are in my diet that I'm not aware of? Makes ya think. And--thinking more here--does this mean that I should consume more aluminum & iron to make up for what I'm losing, or should I avoid both because I have a metabolic intolerance for them? Eh! Who knows. Wake me up when they've figured it out... ; )

A good laugh and a long sleep are the best cures in the doctor's book. ~Irish Proverb

Saturday, February 18, 2006

Massages are a very, very good thing. : )

For Valentine's Day Todd booked an appointment for me with a fantastic, um, massage guy. (I'm sorry, but calling him a masseur is something I cannot pull off. Maybe if I lived in Manhattan and had a doorman and a thing for tiny dogs with special hair needs I could do it, but until that time, no.)

Okay, aaaaanyway, the massage was great. Ahhhh.

Bayley is at a birthday party... not sure where Todd and Eric are right now. I might go catch a nap.

We saw "Match Point" last night, the new Woody Allen movie, very interesting. I read Dostoevsky's "Crime & Punishment" in June--I had no idea that Allen had used it with this movie--but once I figured it out I was delighted. I won't spoil it for you in case you haven't seen it. But... it would help if you read the Dostoevsky first. Hey, why NOT read a 700-page novel for the sake of a Woody Allen movie? It's just a little film prep. Not a problem! ; ) Scarlet Johannsen was delicious, and you won't anticipate the plot twists, even if you have read the book.

Sunny day. Tomorrow, who knows. I'm dizzy... but I'm Xanax'ed, so I'm not distressed about it. : ) Maybe that's the real reason doctors prescribe benzodiazepines... maybe the whole thing about Xanax and Klonopin "helping my vertigo" is a sham. "Yeah, what you have, that's just awful. No way around it. Can't cure it, can't give you a great prognosis, you're in deep doo-doo. But what I CAN do is give you 500 pills that will make it much easier for you to distance yourself from the reality of your situation. Enjoy."

Better living through chemistry.

And is that so bad? It feels merciful to me now.

Here's my favorite pic of my son from April of 2005. Yes, he looks like me. It is my fondest hope that although he resembles me on the outside, on the inside he is like his father:

Making the decision to have a child-it's momentous. It is to decide forever to have your heart go walking around outside your body. --Elizabeth Stone

Thursday, February 16, 2006

Feeling somewhat more normal today.

I just took it easy. Cleaned the house. My new sofa was delivered this afternoon, I love it.

I saw this quote, and I really think it describes me: "An Atheist believes that a hospital should be built instead of a church. An atheist believes that deed must be done instead of prayer said. An atheist strives for involvement in life and not escape into death. He wants disease conquered, poverty vanished, war eliminated." ---Madalyn Murray O'Hair


Wednesday, February 15, 2006

Vertigo. I just can't get a break.

I'm so desperate to feel normal, I'll try anything once.

This doc on this website seemed to have quite a bit of advice on dealing with allergies... I, still hoping that my vertigo is due to some allergic reaction and NOT multiple sclerosis (please oh please oh please), thought that I'd give his recommendation a try:

Instant ‘Allergic Ear’ Relief!

Eustachian tube block can often be dramatically relieved with nasal sprays containing a strong decongestant, such as Neo-Synephrine (0.5 percent). Tilt the head back and to one side, turn the spray bottle upside-down and get enough of the spray into the nasal passage so that you can actually taste some of it in the back of your throat. Then turn your head the other way and repeat, using the other nostril. This technique is often dramatically effective at ending allergic ear problems, because it passes the decongestant directly over the entrance to the Eustachian area located in the nasopharynx. During plane flights, this should be done one-half hour before a scheduled descent. For children, it should be done at the first sign of pain or discomfort, repeated in 4 hours and then repeated again if symptoms reappear. This will often abort painful episodes of otitis media. Drinking more fluids on a regular basis will greatly reduce the unnecessary use of antibiotics.

Seems like it makes sense, right? Well... I did it and got one of the most intense headaches of all time. Ohhhh. It really hurt. For about three hours I wanted to be unconscious. I cancelled my appointments... called my friend to see if she could pick Bayley up from school...

Todd had a short day, so he was able to pick Bayley up from school and take her to tennis. Right now Todd & Eric are playing the airplane video game together. They like things that fly.

I'm so tired today. What is wrong with me? I feel like I've run a marathon, and I've hardly moved.

I woke up at 3:30am and couldn't get back to sleep. I think I need to change the schedule of my Rebif injections.

If I could, you know I would
If I could, I would
Let it go...
--U2, "Bad"

Tuesday, February 14, 2006

A girl! It's a girl!

I found out a few days ago that Todd's younger sister, Amelia, will be expecting a baby girl in June. Woo hoo! Bayley will have a little girl cousin on my husband's side. Lovely, lovely, lovely. I already know that the baby will have long dark hair when she's born, just like Bayley did. My niece and my daughter are going to look very much like sisters instead of cousins. Whaddya wanna bet.

Amelia and her husband live in France (if that's not romantic, what is?); I imagine my new niece will be surrounded by a doting family... and of course a nursery decorated in very, very good taste. : D

We visited France in June of 2004. Here's a picture of Bayley in Brittany. She had just turned nine:
And Todd was 36, and Eric was about 18 months old:
Speaking of babies, I think that Eric might be leaving part of his babyhood behind. Yesterday morning when I dressed him for preschool he absolutely refused to wear a diaper. He screamed, kicked, wouldn't do it. He had to wear underpants. So... I let him wear underpants to preschool. I've let him wear underpants around the house, but I've never, ever let him out in public without a diaper. I was nervous.

I picked him up from preschool three hours later, fully expecting to find him in a diaper and the spare pants I gave to his teacher ("just in case"). But lo! He was completely dry. He'd been perfect for over three hours, at school, without me, and all I can say is-- WOW. I was practically flipping out with glee. Wow.

Last week he told me he loved me. Another first.

Here's Eric. The photo was taken in October. Make a wish:

And hey--it's Valentine's Day. Happy Valentine's, everyone.

How am I doing: Well... after that last post, I was feeling brave. So I ran around town, doing errands that I'd have done when I was perfectly healthy. At about 2:30 I was in Old Navy, shopping like a normal person, and the store just started to spin. It was very, very maddening. So I went out to my car and got myself under control... and then I went to a restaurant to have something to eat. I hadn't eaten anything all day, and I just had to try to eat something, anything, I dunno. I also decided to have a glass of wine. Like a normal, healthy person, right? Bad idea. The Rebif and the wine hit me at the same time, and I actually had to call a friend to drive me home. I was a mess. Vomiting, crying, the whole pathetic scene. I am lucky to have a friend who will a) pick me up and b) hold both me and the bowl while I retch. You really can't buy friends like her. So thanks. I hope I can keep scenes like that to a minimum in the future.

My left hand is numb and tingly. My right leg is worse; tingling up to the hip now. I can't really feel three of my toes. My vertigo. The vertigo. It's just not, it's just not, not not not going away.

It's sunny again today though, and I feel pretty good overall.

Friday, February 03, 2006

$1 million bucks to OHSU for MS research. Nice.

This story from Oregon Health Sciences University is amazing. It bolsters my faith in humanity. Basically, a guy in Portland gave a million dollars to OHSU for MS research. His daughter Laura has MS, and I love her comment:

"I'm convinced that MS can be cured in my lifetime," she said, "but only if scientists have the freedom to pursue their most creative ideas. The way research is funded today, that freedom has to come in the form of community support. If the public knew how close they really are to discovering better treatments - even cures - at OHSU, I know they would be lining up to pitch in."

I hope so.

I went to the gym three times this week. I cannot believe how far I've fallen behind in just 2 1/2 months! Whoa. Resting heart rate used to be 59... now it's 100. Used to do 4.8 miles in 40 minutes... can't even do half that. I'll have to work on it all.

More happy-happy joy-joy news: I got the definitive report back on my neuropsychiatric evaluation. I'm in the 97th percentile for overall intelligence and above the 99th for memory. : D I love it. It felt like I had given my diagnosis the finger. So yeah... I still have MS, BUT... even so, I'm not suffering from the incurable condition of stupidity. Yet.

Of course the bad news on the evaluation was that I'm "depressed". (Ya think? Lol...)

Todd is at the hospital doing hearts today. Bayley went roller skating with her school. Eric is in a new preschool that I adore.

And the sun is out. I should go trim those roses in the front.

"And, has thou slain the Jabberwock?
Come to my arms, my beamish boy!
O frabjous day! Callooh! Callay!'
He chortled in his joy.
--Lewis Carroll, "Jabberwocky"

Monday, January 30, 2006

Every artist is a cannibal

Every poet is a thief
All kill their inspiration
And sing about the grief
--Bono, The Fly

Just a quick note to say that I feel much better this week. I went up to see the neurotologist in Portland last week, and I think he had cheerful news. He said that he felt that my vertigo is NOT, repeat NOT being caused by my MS. He thinks that allergies are the most likely culprit.

And so I have a new gameplan! Allergy shots, a different benzodiazepine (I'll switch from clonazepam to valium or xanax), and perhaps some diamox to relieve the pressure in my ear.

I'm still dizzy, but I'm cheerful. I feel so optimistic. Allergies! It could all be about allergies. Everyone has allergies. Your mother doesn't cry when you tell her you have allergies. People don't take a step back and go silent when you tell them you have allergies. HA!

Eric & Todd are taking a swimming class together. They just got home. Bayley is working on her homework on her new desk. She & Todd went skiing on Saturday, I hear it was a beautiful day with fresh powder...

I haven't been to the gym since November but I'll start working out again tomorrow, methinks. : ) I'll still be on the Rebif, still have a numb left hand & right shin etc, but what the heck. If I get too tired, I'll stop.

Monday, January 09, 2006

Another 44 mcg shot survived.

I took it on Sunday morning and tolerated it much better than the Friday night dose. I *think* I did much better this time because I found some Vioxx and took 1/2 a pill right before I injected myself.

When it comes to controlling pain and inflammation, Vioxx rules. It runs circles around Tylenol and Celebrex. Too bad they don't make Vioxx anymore, though... I have 2 1/2 left. I'll be rationing them very carefully.

I went to Costco with my friend J yesterday.

I'm still just dizzy, dizzy, dizzy. Every second of every day.

I hope the otoneurologist can help me. I see him on January 25th. He's up in Portland, so it'll be kind of a big journey. I'll have to have several tests done up there, even though I've already had them done here: an MRI, a hearing exam, and a VNG. The VNG in particular is really, really horrible. But if this doctor can help me, I'll do it again. I'll even wash his car.

I wonder if I'll ever feel normal again. I wonder if I'll ever get a break. I think about who I was a year ago... we were going to Hawaii, we were excited, I felt great. We spent Todd's birthday together at a restaurant on a beach on Maui. Life was neat.

It all seemed like it happened so long ago, and to somebody else.

The days pass and I lose hope.

Friday, January 06, 2006

I took the big 44-mcg Rebif shot last night.

I thought if I took it at night that I'd be able to sleep through the side effects.

It didn't work.

I tossed and turned. Right now I'm practically falling over, I'm so tired. I almost started crying downstairs just a few minutes ago for virtually no reason whatsoever other than I'm so, so, so, so tired. I'm tired, in spite of the fact that I'm on Adderall, which is a respectably strong amphetamine used to fight fatigue.

I'm really getting slapped around right now.

I took Bayley to school at 7:45. I took Eric to school at 9:30. I'll go pick them up @ 3:00 & 3:30, respectively. My sister-in-law is downstairs playing with my niece E, who is as cute as a bug's ear. Here's a picture of her. My dog, Bella, is in the background:

I am going to bed.

Not that I'll be able to sleep. I'll just whimper for a few hours.

It's a beautiful day.

It's too high to get over (yeah, yeah)
Too low to get under (yeah, yeah)
You're stuck in the middle (yeah, yeah)
And the pain is thunder (yeah, yeah)
----Michael Jackson, "Wanna Be Startin' Something"

Wednesday, January 04, 2006

Injection sites look like welts now.

The 8-mcg Rebif doses didn't seem to cause any injection-site reactions, but I've noticed that the 22-mcg sites are leaving red/bruised welts the size of quarters. Not very attractive.

Eric went to daycare today for the first time. He enjoyed it. Such a relief.

Boy, they have to be so careful with Eric's skin though-- they have agreed not to use any soap to wash his hands. He's having a pretty bad flare of his eczema right now; his left thumb and wrist are nearly bleeding. Plus, an area on the back of his thighs is just out of control. This is odd because up until about 10 days ago his skin had been looking great! I suspect one of my new nanny helpers is using regular soap on his laundry or not rinsing it properly. His clothes, blankets, towels and bedclothes all have to be washed with the hottest possible water, with Dreft, and then double-rinsed. NO fabric softener, either. I think someone has been cutting corners and not double-rinsing... It's time for a review of Eric's Laundry Procedures with my staff. : )

So, what did I do with my free time when Eric was in daycare and Bayley was at school? I cleaned Bayley's room. I worked that room for 6 hours straight, no lunch, and still didn't finish the job. I probably took out 5 bags of trash. She's a hoarder.

I thought she'd come home and get mad at me the way she usually does when I clean her room... I haven't cleaned it for over a year for that very reason. But she looked around and said, "Thanks, Mommie!" and gave me a hug. Lovely!

Tomorrow my sister-in-law and her daughter arrive for a visit. D has been married to my brother Jason for nearly 4 years... amazing that someone would be married to one of my brothers for that long! heh, kidding there...maybe. ; ) Jason & D have a little girl, E, and she just turned 1. I'm really looking forward to their visit; I haven't actually ever seen little E in person! And she's my very own niece! I'm excited. They're staying for 10 days. I hope they don't go nuts from boredom.

What else is going on: I double my Rebif dose in 39 hours.

I. am. nervous. This is going to be rough, folks, this is the worst part, hang on. I wish I didn't have to do this, I wish I didn't have to do this, I wish I didn't have to do this, but I have to, and I have to pay $1,495 every FOUR WEEKS for it.

Frodo: I wish the Ring had never come to me. I wish none of this had happened.
Gandalf: So do all who live to see such times, but that is not for them to decide. All we have to decide is what to do with the time that is given to us.
-----Lord of the Rings - Fellowship of the Ring

Tolkien helps me through some tough days.

My vertigo is still pretty bad. But as of yesterday, I've gotten much of the sensation back in my left hand. : ) *That's* exciting.

Monday, January 02, 2006

The kids are back in school tomorrow.

Hooray! ; )

I swear, Christmas break just goes on and on and on...!

In the morning that all ends. Bayley will be picked up @ 7:45 by L, my carpool buddy, and taken to school. At 8:30 I'll take Eric to preschool. Preschool is clear across town, but he loves it. By about 9:20 I'll be back home, and I'll have the house allllll to myself... ahhh... I'll have one hour and 50 minutes of peace. One hour and 50 minutes of solitude. One hour and fifty minutes to think. No one will be around to whine. No one will be around to make a mess in the kitchen--the mess is always in the kitchen, and part of it always sticks to the floor.

No one will be home but me. And that's great. Having the house to myself is better sometimes than a pedicure or a massage--because IF you leave your family in the house to go get the pedicure or massage, you can be guaran-damn-teed that by the time you get back your kitchen will need an hour of rehab , every single toy will be on the floor, someone's diaper will smell bad and someone else will be hungry. And they'll know exactly how long you've been away. Break's over! Back to work!

Ahhh... anyway. Back to my plan for the morning. At 9:30 I'll give myself a shot. Tomorrow, at least, Eric won't be screaming outside of the bathroom door while I do this; screaming is what often happens when he's around (Why is Mommy going into the bathroom by herself? Why is she locking the door? Why can't I come in?), even if I'm only in there for 2 minutes.

That's motherhood, though. If you aren't available 100% of the time you risk wrath.

For one hour and 50 minutes if I want to take a shower, I can. If I want to curl up on the bed with a heating pad, I can. If I want to browse the internet for furniture I can't afford, I can. As long as Eric doesn't bite anyone, I can do whatever I want, for one hour and 50 minutes. No one will be around to watch me or judge me. I will feel no pressure.

Then at 11:10 I'll get back in the car, drive across town and pick Eric up from preschool. I should be home by 11:50.

It's not a lot. But it's what I've got. I cherish it.

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