Michele's Blog

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.