Archive for April, 2010

Was It Just A Remicade Dream?

Friday, April 30th, 2010

Where would you rather sit if you were having a Remicade infusion?  Here:

waiting room chair

Or here?

infusion-chair

Yeah, me too.

I belong to a couple of online RA discussion boards.  Every once in awhile, a frightened Remicade newbie will post a question about the infusion process.  The community generally jumps in with reassuring responses and descriptions of how the whole thing works, describing friendly infusion nurses, recliners, TVs, even snacks.  And I sit there reading them, thinking, “Really?  It doesn’t go that way for me…”

Yesterday, I got to find out how the other half lives.  See, my infusions are normally done in my rheumatologist’s office – a nurse comes in on Thursdays to do them.  But about two weeks ago, I got a call saying that the nurse wouldn’t be available on my scheduled week, and could I move it a week earlier or later?  The other dates, unfortunately, didn’t work for me.  I’ve also been pretty unhappy with my infusion experiences, and have been curious about how other people do it.  So I asked if there was someplace else I could go, and the medical assistant reluctantly said that I could have it done at the hospital.  She did warn me that it would be more expensive, but I thought it would be worthwhile just to see what it was like.

And boy, was it different. 

When I get Remicade at my doctor’s office, this is the drill:

I am shown to one of the regular examining rooms, which are really tiny, and I sit in a wooden chair very much like the one in the first picture except older and shabbier.  Recently, someone moved the furniture around in the examining rooms, so the chair now sits awkwardly behind the open door, where the door bumps my chair if anyone tries to open it wider.  The nurse comes in and starts my IV.  Most of the time, he doesn’t take my vitals, and he never asks me any questions.  Then he hooks up the Remicade bag and leaves.  I generally don’t see him or anyone else again.  I sit and read a book or listen to music on my iPod.  At a certain point, I feel pain in my arm and look up to see that the IV has run completely dry.  So I get up, drag my pole out into the hall, and flag someone down to try to find the nurse.  If he’s not in the middle of something (which he usually is), he comes in, flushes the line with saline, and bandages me up.  Otherwise I wait awhile, then go back into the hall to repeat my request. 

Since he has so many infusion patients in one day and also has another job to get to after he’s done, the infusions have been getting faster and faster – they now take less than an hour and a half.  I’ve told him before that fast infusions make me feel awful, but he claims that the Remicade drug rep told him that speed isn’t an issue, and that some people just react that way to the drug.  (Funny, since I only started reacting badly when he started speeding up – also funny, since other people on the boards say they have the same problem.)  After my infusion, I go down to the car where my husband is waiting.  I am always depressed and shivering and my hands are icy; my husband has to turn the heat on in the car, even if it’s hot out.  I feel like I’ve been hit by a truck.  We go home, where I collapse and sleep for hours.  Sometimes I wake up the next day still feeling awful.

 Now, here’s how yesterday went:

I got to the hospital and went up to the infusion room, which turned out to be on the oncology floor.  (I do have to admit that seeing “CANCER CENTER” on the wall when I got out of the elevator did bum me out a bit… the one negative in all of this.)  I walked into the room and saw about four or five blue recliners and two other patients, who were there for chemo.  The nurse, who was incredibly friendly, weighed me and took my blood pressure and temperature.  Then she asked me a whole bunch of questions about how I was feeling and went over my chart.  She had a list of my medications which my rheumatologist’s office had faxed over; about half of them were wrong, and she made the appropriate corrections.  (Okay, this worries me – time to have a talk with them.)  I found an empty recliner, which had a pillow waiting for me and a big table next to it for my things.  I told her that my infusions usually take about an hour and a half but that I don’t do well at that speed.  She reacted with horror and said that the Remicade guidelines are pretty clear on the importance of going slowly to minimize the chance of infusion reactions – she usually takes about three hours.  She started my IV and let me get good and hydrated before hooking up the Remicade bag.

At all times, there was at least one nurse in the room, and all of the nurses I saw were friendly and kind.  They came right over to each of us several times to ask how we were feeling.  They ordered lunch for us from the hospital cafeteria.  Several times, they passed out chocolate, and also offered to go get sodas if we wanted them.  The recliner was really comfortable.  There was a TV, but I didn’t watch it.  Instead, I had a great conversation with the 87-year-old cancer patient in the recliner next to mine – we turned out to share a common interest in opera.  My IV didn’t run dry – the nurse came over before the Remicade bag was completely empty and flushed the line.  I never had to go looking for anyone. 

When I came downstairs and got in the car, my husband remarked on how different I looked.  I was warm and happy and felt cared for.  (The chocolate zinging through my system didn’t hurt either!)  My hands weren’t icy.  I went home and felt mildly tired, not exhausted.  I didn’t need to nap.

Now I don’t know what to do.  I love my rheumatologist; he is smart, kind, spends lots of time with me, takes a team approach to my care instead of dictating to me.  He seems to know everything – I will come to him with what seems like a vague symptom, and he knows immediately which tests to order.  He has come up with some things that seem like they’re completely out of left field, and always turns out to be right.  He is, quite simply, the best doctor I’ve ever had.

But there are problems with his office, more than just my issues with the infusion process.  Twice now, I’ve gone to my infusions expecting my dosage to be raised, and learned that someone forgot to call the insurance to authorize the increase – so I had to stay at the lower dose.  The medications listed on my chart are usually wrong – I’ve called to have a prescription filled and found that someone forgot to note my new medication in my chart, resulting in a delay.  Medications have also been called in at wrong doses or in wrong amounts.  The billing office is more than six months behind – a big problem, since my FSA has deadlines.

I was pathetically grateful for the way I was treated at my infusion yesterday – I was ready to get down and kiss the nurses’ feet.  I almost felt guilty for getting such good care, as if I somehow don’t deserve it because I am not a cancer patient.  I question whether it was worth it, given the difference in cost - am I just being won over by chocolate and kindness?  (I don’t know exactly what the cost difference will be – I’ll know when I get the EOB – but our PPO only pays 90% of costs, so it’s bound to be expensive.)  My husband points out that we always meet the out-of-pocket max on our insurance anyway, and what does it matter if we meet it a little sooner?  My mom points out that infusions are, when you really think about it, a pretty terrible thing to have to go through, and that the least they can do is make the experience as comfortable and pleasant for me as possible.  And what’s wrong with a little chocolate?

I have much to think about.

I Don’t Think Anyone’s Ever Called Me A “Sugar Doll” Before!

Tuesday, April 20th, 2010

Sugardollaward

“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

Rheumaversary

Wednesday, April 14th, 2010

Blue_candles_on_birthday_cake

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.

Becoming Visible

Thursday, April 8th, 2010

invisibility-cloak

For the most part, my illnesses are invisible.  I’m not in a wheelchair, I don’t need to walk with a cane except on rare occasions, and I don’t have visible deformities.  I’m the type of person who gets dirty looks when I use my disabled parking tag.  There have been huge (massive, really) changes in the way I look since my onset, but only people who knew me before would know that.  People seeing me for the first time would probably just see a fat woman, unless they’re really familiar with the distinctive look of steroid puffiness.  (I find that I can now spot it on other people.)  And although it rankles that most people who knew me before probably just think I’ve really let myself go in the past few years, I appreciate the fact that I can choose whether to disclose my illness or not – it’s not obvious.

But now…

I’ve written before about the fact that I’ve now been diagnosed with adrenal insufficiency.  This is probably a direct result of the RA, in one way or another - whether it’s because of prednisone overuse or because my adrenals have been attacked by the RA isn’t clear at this point.  (Probably the prednisone.)  But the bottom line is that because I have shown no improvement in the two months since it was discovered, I am now on hydrocortisone, and will be for quite some time.  And since adrenal insufficiency is a dangerous thing to have, it means that last night I had to buy one of these:

medic alert  

Yes, I know that lots of people wear these – most diabetics have one, and people with things like peanut allergies wear them too.  But can I be honest here, and tell you how much this step bothers me?  It announces to the world, “Something is wrong with me.”  It takes something private and makes it public.  It takes away a small piece of my choice – I know that I still don’t have to discuss my illness with anyone, but I can no longer pretend I don’t have one.

And yes, most people are pretty unobservant, but I teach piano.  I sit right next to students and they look at my hands.  There is no way they won’t see this.  And I just don’t want to talk about it.  I’ve worked hard to keep my health situation private at work, and I plan to keep on doing so.

I just feel as if another little piece of my “normal” has fallen away.

Yesterday I had a long, long, conversation with my husband (okay, more like a vent TO my husband) about feeling as if there’s a sharp dividing line in my life between the old me (pre-RA) and the new me.  My husband and I have been married for three years and four months, and we dated for two years before that.  Next week marks the three-year “anniversary” of my diagnosis, and for some reason, this made me realize that we are past the tipping point – he has known me for longer with RA than without it.  I wonder if he even remembers me the way I was.  (He tells me that he does, and that he still sees so much of the “old me” in me today – isn’t he sweet?)  But it really, really bothered me to realize that the dividing line is getting farther and farther behind me, and I feel as if all of my achievements, all of the good things about me, are behind it.  I don’t know why, but this bracelet just feels like a symbol of that, a visible daily reminder that I am not who I once was. 

In one of those weird acts of synchronicity that frequently happen in blog-land, I saw this post from RA Warrior yesterday, AFTER this conversation.  And it was comforting.  It reminded me that whatever I am feeling, whatever I go through in this crazy funhouse called autoimmune disease, someone else has been there too, and understands.  And that may not make it all better, but it sure helps.

P.S. – I recently saw a friend that I haven’t seen since the summer, and finally told her about my RA.  She said, “Yeah, you really looked sick last time I saw you - I wondered what was wrong.”  So much for my cloak of invisibility!

Her Diamonds

Friday, April 2nd, 2010

“Her Diamonds” is a song by Rob Thomas, written about his wife’s struggle with an unnamed “lupus-like” autoimmune disease.  I first discovered this song back in July by reading Rheumatoid Arthritis Guy’s blog, and was impressed at how well it captures the essence of a couple living with a disease like this.

So why do I bring it up now?  I’ve been going through a rough time physically, and strangely enough, this song has been following me around.  After a long period of not hearing it anywhere, it suddenly seems to be everywhere, and appears at times when I’m having particular trouble.  I was driving home from a difficult and painful bodywork session when it came on the radio, and I pulled into a parking lot and cried.  Then on another day, I was in the drugstore filling a new prescription, which felt like a defeat since I’ve been trying to reduce meds, and there it was again.

Rheumatoid Arthritis guy writes about it here, and he also includes a video that shows the words to the song if you’d like to read them.  But I want to show you the other video, the “real” one.  To me, it seems to capture perfectly the feeling of being trapped inside a body wracked with pain and fatigue. 

YouTube won’t let me embed it, unfortunately, but here’s the link:

Her Diamonds