Posts Tagged ‘Blood Tests’

Wanted: Pain Whisperer

Friday, October 4th, 2013

Whisper-in-ear

I had an interesting appointment with my rheumatologist recently.

I have a standing lab order at LabCorp; my doctor renews it every six months. (I get blood drawn every six weeks.) Several months ago, at the beginning of a new six-month period, I noticed that the lab technician only drew three vials. (Usually it’s six or so.) So I asked, and it turns out that my doctor dropped several tests on my most recent lab order. Right now the only tests being done are the CBC and two liver tests (ALT and AST). The ones that have been dropped include things like sed rate and CRP. So, as I understand it, I’m mainly being checked for damage from medications – not for any of the markers that indicate inflammation or give an idea of disease activity.

So at my last appointment, I asked my doctor about this. He said that he doesn’t find the blood numbers particularly meaningful, and that he believes that patient reports are a far more important indicator of disease activity. (He does have me fill out a detailed questionnaire every time I come in, and he always does a joint exam.) “You are your own best sed rate,” he told me.

“But I’m not always sure that I really know how the disease is doing,” I said.

He smiled at me. “Oh, I think you do.”

I have my doubts about this. On the one hand, I think it’s great that he really listens to his patients. I know that it’s a very bad thing when the opposite occurs. (Kelly at Rheumatoid Arthritis Warrior has written about this a lot.) But I also hear other RA patients talking about things like the Vectra DA test. I also know that disease activity can continue when symptoms are quiet – I’ve even heard stories of people who thought that they were in remission while serious damage was happening underneath their level of awareness.

There’s another problem with this, too. I have always had trouble interpreting my own pain. I’ve never been athletic, and when people talk about the difference between “pain” from injury and the good “soreness” from exercise, I have no idea what they mean. Even long before the RA diagnosis, I always had trouble with this distinction. Once the RA came along, it got even more complicated for me – is this a flare? Muscle pain or joint pain? Is it the exercise or the RA? Is it caused by stress or depression? Sometimes, especially if I haven’t gotten enough sleep, everything seems to hurt, even though a joint exam and bloodwork show no problem. Other times, I have such a high pain threshold that I don’t even notice it. I once walked around for two weeks on a sprained ankle with no idea, simply because I had gotten so numbed to RA pain that the injury didn’t even register.

Do any of you have this kind of “pain-deafness,” or am I unusually out of touch with my body? I wish I had a Pain Whisperer – someone who could tell me, “This is from the RA.” “This is normal muscle soreness from exercise.” “This is because you hurt yourself.” Someone who would always be right, who wouldn’t miss anything. (I’m thinking back to the many alternative-medicine practitioners who got it wrong during the months before my RA diagnosis.)

In the meantime, I don’t know what to make of this change to my lab work. I’m suspicious because of the timing. I’ve noticed a lot of changes (almost all negative) in the way my insurance handles things since the new year. Right now my Remicade infusion has been delayed because of one of these insurance changes (a subject for another post). So I have to wonder – is this an economic decision? An insurance decision? Or is this how my doctor really feels?

Now I wish I had a Medical Practice Whisperer.

Edit: I just read this post over at Pollyanna Penguin’s blog – seems I’m not the only one with this issue! And I was also reminded of this 2009 post at Carla’s Corner – funnily enough, I see that I commented on it at the time! Guess this is a long-standing issue for me!

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.