Remicade Dream

I’m pretty sure the answer is “no,” at least in the way I understand remission.  But these days, I am questioning my understanding of remission.  This is definitely a case in which I’d like to get input from you, my readers who also have chronic illnesses.

I don’t think that I am experiencing a “true” remission.  I am still very much dependent on many different medications to keep me working.  We actually increased my Remicade a month and a half ago (seven vials – yowee!), so I’m definitely not anywhere close to drug-free remission.  That may not be a realistic goal for me, although it sure would be lovely.

But am I in drug-induced remission?  This is what I’m trying to figure out.  If I am, it’s not like I thought it would be.  My idea of remission was one of two things: either I would go back to feeling the way I did before I got RA, or I would feel great, like I do when I’m on high doses of prednisone.  Since I’ve had very little permanent joint damage, those ideas didn’t seem that unrealistic.  But that’s not what I’m experiencing.

Here’s how I am: my bloodwork looks great.  My joints look great.  I haven’t needed a cane in ages, and I’m beginning to feel that I might not need my disabled parking permit anymore either.  I haven’t had a flare that truly knocked me down in awhile now.  I have tapered completely off prednisone and didn’t go into a flare when it was done.  Little by little, I am regaining my ability to do things I couldn’t do before.  I think I really am getting better, but so slowly it’s been hard to notice.  And I didn’t think it would be like that.  I thought that once we reached the right medication combination or dosage, I would see an instant, dramatic improvement.

I don’t really know what’s going on.  I still have fatigue, and I still wake up stiff and take awhile to get moving.  Also, I had a stressful day yesterday, and had what sure seemed like a stress-induced flare today.  Very interesting, since I have never had one – it’s usually doing too much or getting too little sleep that make me flare (or, sometimes, just randomness).  It was a mini-flare, nothing like the flares I’ve had before, but I felt awful this morning, took a long time to get moving, and my left knee is very sore.  Doesn’t being in remission mean that you don’t get flares?

I am seeing my rheumatologist tomorrow, and am interested to see what he has to say about this.  I still think a lot of my fatigue and achiness come not from the RA being active, but rather from the after-effects of the RA having been active for so long.  I am still about twenty pounds overweight, and my muscles have tightened and atrophied over time from disuse.   I am still recovering from adrenal insufficiency.  I also have a few other conditions that have been acting up, like asthma and interstitial cystitis.  Am I feeling mildly crummy because of them, and not because of RA?  Sometimes I forget that there are other reasons besides RA for feeling bad.  

I don’t want to go swimming in that river in Egypt, and I feel that I’m in some danger of doing just that.  But I also don’t want to live life like I’m sicker than I really am right now. 

Your thoughts?  What does ”remission” look like?

I’ve been feeling lonely lately – not a single comment!  Then it dawned on me that the comments stopped right when I added a new anti-spam feature to my blog.  So I logged out, tried to comment as a different user – and it didn’t work!  Voila!

Anyway, I’ve disabled the anti-spam feature until I can figure out what the problem was.  Feel free to comment if you want to!

“The Fabulous Sugar Doll Blogger Award” has been making the rounds, and I’ve been nominated!  A big thank you to WarmSocks and Wren, whose blogs I love and read regularly.

According to the rules of this award, I’m supposed to tell you ten things about me that you don’t know, and then nominate five blogs for the award.  I’m going to stick to fun and/or silly things – it seems to fit the spirit of the award!

1.  I used to be an Irish step dancer – in fact, there’s even a video of me dancing at my wedding on YouTube, huge white gown and all!  (I didn’t post it there, and no, I’m not going to provide a link!) 

2.  I am OBSESSED with chocolate!  I’m going to have a chocolate-themed party for my 40th birthday.

3.  I am afraid of balloons!  Ridiculous but true.  I’m always convinced they’re going to pop and freak me out!  Mylar balloons are okay.

 4.  I like to make up ridiculous songs to sing to my little son, my cats, and other random loved ones.  One of my favorites boasts the lyrics, “Small and smelly, yes I am/So I have to take a bath/I don’t wanna take a bath/No, I’d rather be small and smelly!”

5.  I have two cats named after opera characters, Marcello and Musetta.  Bonus points to anyone who can name the opera without looking it up!

6.  Just like Helen at Pens and Needles, when I was a kid, I kept a “spy notebook” and wrote down all kinds of random things I saw people doing.  This led to a lifetime “notebook” habit – I still keep one, but now I call it a “journal” - sounds more adult, no?

7.  I wrote fiction a LOT when I was younger, and wanted to be an “author” from the moment I knew what the word meant.  I somehow drifted out of the habit in my twenties, and am now thinking it’s high time I took it back up again.

8.  My parents were professors, and I used to create “magazines” out of the blank exam blue books they left around.  My brother and I published rival magazines, and got into a huge fight once over slanderous stories we wrote and whether or not they were true.  My mom took out a big black marker and taught us the word “censored.”

9.  I never feel settled in a new home until I have baked TollHouse cookies in it.

10.  I get fiercely competitive when I play games.  My husband loves games, so we play a lot of them.  If I lose, we can’t go to bed until I’ve won a round of SOMETHING.

Now for my nominees.  This is MUCH harder, since there are so many blogs I love!  I’m going to stick to people who don’t yet have the award posted on their blog – but even so, this was a hard choice!

Laurie at A Chronic Dose

Amanda at All Flared Up

RA SB at Confessions of an RA Superbitch

Leslie at Getting Closer to Myself

The Thousand Teeth

Monday, April 9, 2007

“You have rheumatoid arthritis,” the doctor said.

I looked at him.  He waited for me to speak.  I looked down at the table, at the long silver tray where the hypodermic needles lay waiting, loaded with hydrocortisone.  The doctor was a hand specialist, and I had come to be treated for what I thought was tendonitis in my left thumb and right index finger.  My mind reached back to the mother of an old boyfriend – she had rheumatoid arthritis.  What did I know about her?  She didn’t seem to have much wrong with her.  I remembered that she had a massage therapist come to her house every week, and that she told me that she needed to avoid stress because it made her condition worse.  From this, I had developed an impression of rheumatoid arthritis as something mild and possibly psychosomatic. 

Then I looked over at the nurse.  She looked stricken, as if the doctor had just told me something terrible.  Why? 

The doctor explained, slowly and gently, that while he could still give me the hydrocortisone shots, they would only help things temporarily, and that the problems would almost certainly come back in another joint.  He showed me my blood test results.  Something called the “rheumatoid factor,” which was supposed to be below 14, was listed as 468.  He used words like “severe” and “aggressive” and “damage,” and told me that I needed to get in to see a rheumatologist as soon as I could.  I just stared at him, trying to put what he was saying together with the impression of my old boyfriend’s mom.

I declined the shots, took the phone numbers he gave me, thanked him, and left the office.  I went to my car, sat down inside, and called my husband.  “He says I have rheumatoid arthritis,” I said.  There was a lump in my throat and I didn’t know why.

The ironic part is that I turned down the shots because I was afraid of needles.  I had no idea what was coming.

Thursday, April 12, 2007

My husband and I sat in the rheumatologist’s office.  I liked it – it was messy, a trait that for some weird reason, I had always associated with creativity and intelligence.  Under his white lab coat, the doctor was wearing a loud plaid shirt with a clashing tie.  For some reason, I liked this too.

He fired information at us quickly, so quickly I could barely take it in.  Words like “rheumatoid factor” and “sed rate,” “DMARDS” and “biologics” and “prednisone” flew through the air.  Again, like the other doctor, he mentioned “severe” and “aggressive.”  He kept saying, “We need to get this shut down.”  I had done a little research by then, and what I had read scared me to death.  The things he was saying didn’t make me any less scared, although he seemed pretty calm.

Then he said, “And, of course, you can’t get pregnant while you’re on these drugs.  Were you planning to get pregnant?”

“Yes,” I said.

“I’d like to see you wait about two years.  That should give us enough time to get this under control, and we can go from there.”

Two years?  I was 36 years old, almost 37.

In an examining room, a nurse gave me two shots, one called Toradol and the other called Depo-Medrol.  So much for avoiding the needles.  She sent me home with a lab slip ordering more bloodwork (again, more needles?) and four prescriptions. 

I called my mother and cried on the phone.  “Two years!  I can’t wait two years to have a baby.”

“If these drugs are really that dangerous, you should really take a pregnancy test before you start them,” she said.

“I don’t think I’m pregnant.”

“Just do it for me.”

Friday, April 13, 2007

Early morning.  I left my husband sleeping in our bed and went into the bathroom.  I took a pregnancy test out from under the sink.  It was a cheap one; one of my friends had bought them in bulk when she was trying to conceive.  I peed on the stick and left it lying on the counter, then went into another room and tried not to think about it.  I hadn’t even missed a period; it was due in about four days.

A few minutes later, I realized that I had forgotten to set the timer.  “Crap!”  A lot more than three minutes had gone by, and I knew that the results were no longer considered valid if you waited too long.  I looked at the stick anyway.  It looked like there was a faint line in the test window, but it was too hard to tell.

I took out the expensive Clearblue Easy test I’d been saving.  It was going to be two years of waiting – might as well use it now, right?  This time I set the timer.

There it was, in words clear as day – “Pregnant.”

My heart was pounding.  I went into the bedroom, woke my husband, and said, “I think I’m pregnant!”

“Really?” he said.  He looked excited and happy.

“I don’t know,” I said.  Then I started to cry.  I cried because I was happy, because I was mixed up, because this wasn’t the way I had wanted this moment to happen.  I cried because my husband’s birthday was in six days, and the timing would have been perfect – I would have just missed my period, and this could have been a wonderful birthday surprise.  I cried because I had gotten two shots the day before and had no idea what they might do to the baby.  Most of all, I cried because I didn’t know what was going to happen to me.  Would I be okay without the medications for nine months?  Would I be able to take care of the baby once he or she came?

We were only four months into our marriage, and everything had changed.