Posts Tagged ‘Doctors’

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!

Medless

Thursday, December 15th, 2011

No medicine

I will explain the title of this post in a minute, but there’s so much else to catch up on. Where do I begin?

This year has been so full of change that it’s hard to know where to start. Those of you who read my blog regularly know that my family and I moved across the country back in September. So far, it has been an incredibly positive change. I can’t even begin to express what a difference it has made in our lives to have supportive family around. I can bring my son over to my parents’ house and go have a long, luxurious lunch with girlfriends. My husband and I can go out on dates. We can get to my doctor and hospital visits without bringing our son or worrying about who we can get to watch him. Best of all, my son is thriving, and his bond with his grandparents is a truly beautiful thing to see. There are negatives, too – we miss our old friends, and the cold weather has been a rough adjustment. But on the whole, it’s been wonderful.

My health has been confusing. For a long time, the only real symptoms I’ve been having are terrible headaches and some weirdness in my fingers. I finally had an MRI and they found damage in my cervical spine, which may or may not have anything to do with the RA. I had two cervical epidurals, a month apart. The first one was amazing – I was totally pain free for almost a month! I really couldn’t believe it. When the pain started coming back, I had the second one. Then, unfortunately, I fell down the stairs a few days later and was so banged up that I couldn’t really tell if it had helped or not. I did know that I was having headaches again, though. I went to the pain management doctor who had done the procedure, and he checked my range of motion and nerve function. He concluded that the epidurals had done their job – the problems in my hands were completely gone – and that the headaches were coming from something else, most likely muscle tension. So I’m going to see a headache specialist in January. On the bright side, he prescribed some Zanaflex to tide me over and it really does help when the headaches hit – looks like his theory is probably correct.

Next came a good news/bad news kind of situation. For the past week or so, I have been experiencing terrible pain and a new level of fatigue. My feet have been killing me, and pain radiates from my back all the way down my left leg. It was frustrating to find myself limping around again – it’s been awhile since I had lower body symptoms. So I saw my rheumatologist yesterday. The good news: my bloodwork looks great, and he couldn’t find any joint inflammation at all. The bad news: he thinks this may mean that I have now developed fibromyalgia. I am very resistant to this idea – I really, really don’t want another chronic condition! Anyway, we are holding off on drawing any definite conclusions for now. After all, I did fall down the stairs a few weeks ago, and we both want to see how I do after some more time passes. In the meantime, I want to see what massage, gentle yoga, and good sleep can do for me.

Okay, so now on to the medless part. My husband and I have decided that we would like to try to have another baby. We talked to the rheumatologist about this yesterday, and he approved. My RA seems to be in a really good place right now. It’s possible that it’s been in a good place for quite awhle, and that the headache and muscle pain were confusing the issue. So right now we are in the process of stopping all of my medications, with the exception of Pulmicort for my asthma, and seeing what happens.

Being medless is weirdly exhilarating, like hang-gliding. I push off from the cliff and hope that my remission-like state holds me up, at least until I become pregnant. (I went into remission when I was pregnant with my son, so I’m hopeful that it will happen again.) The freedom is dizzying – no more med side effects, no more panicking if I forget my pills. There are still vitamins to take, but it’s not the same. My med-free body feels great, healthier. At the same time, I know that like hang-gliding, it’s risky. It’s a race against time, and one that I can’t be sure I will win.

hanggliding

When Necking Just Isn’t Fun Anymore…

Wednesday, September 7th, 2011

Spine

Cool, huh? You can see my BRAIN! (Unfortunately, you can also see the fat rolls on the back of my neck – thank you, prednisone!)

So this is one of  many MRI shots of my neck. This one is pretty cool because you can really see the problem, which is right here:

Spine copy

C5 and C6, right in the middle of the picture – out of alignment, with bone spurring, and bulging a little bit into my spinal column. You can also see the problem in the X-rays, although they don’t show the spinal column issue:

Xray copy

There’s almost no space between those two vertebrae, and they are rubbing unpleasantly against each other and pinching nerves when they do. The spine guy said that he sees two different problems – one with the space between the vertebrae, and another involving arthritis of a facet joint. They are manifesting as two different sets of symptoms. The facet joint arthritis is apparently the culprit behind my miserable migraines; he was able to duplicate the problem in his office (which, unfortunately, meant suffering with the headache all day yesterday – ah, science!). The  nerve being pinched between the vertebrae is causing sensation loss in my right hand, which I hadn’t even noticed until the doctor did some tests yesterday. Ironically, I’ve been noticing a loss of function and dexterity in my LEFT hand when I play the piano – no clear explanation for that – and problems with my left wrist, mostly from a ganglion cyst. I guess they caused me to overlook the issues in my right hand!

Anyway, all of this isn’t that terrible. There are much worse things that can happen to a neck, and the doctor says this is pretty normal stuff – not even necessarily caused by the RA, although the RA certainly doesn’t help the situation. He has two different solutions for the two different problems and is going to start with the easier of the two - an epidural steroid injection, done in the OR under fluoroscopy. This doesn’t sound like a lot of fun, but I know people who have had them, and they really seemed to help. He thinks that this will take care of the hand, arm, and shoulder symptoms I am having.

Taking care of the headaches, however, could involve a facet joint injection, which might mean cauterizing some of the affected nerves to kill them off. This doesn’t sound like as much fun. Right now he’s planning to hold off on this – it’s possible that the epidural steroid injection will also help the headaches, so we’re going to give that a shot first. (No pun intended.)

I’m really not thrilled about any of this – shots in my spine don’t sound like a ton of fun. I’ve had steroid shots in my sacroiliac joints, feet, hands, and wrists before. But my neck? Ook…

I would love to hear from any of you who have had this sort of thing done!

And, just to leave things on a more fun note – one of my favorite MRI pictures! Is it me, or an alien? You decide!

alien

Changes

Saturday, September 3rd, 2011

There have been so many major upheavals lately that I don’t even know where to start. This has led to a kind of writing paralysis, and therefore silence on the blog. So let me try to push through it:

We have, at least for now, relocated to the East Coast. My family is out here, so we have much more support, help with childcare, etc. I don’t know how long we will be here – it depends on several factors. We came out here mainly because of issues with the RA. I have some nasty little things going on with my cervical spine, and I wanted to see a really great spine specialist to deal with them. There’s also a great rheumatologist out here, and I’m hoping that he’ll change things up and maybe get me closer to that elusive remission.

Also, Remicade Dream now has a fan page on Facebook! I am clueless about how to use this page and how to get people to “like” it. If you’re a regular reader, maybe you can “like” it, and let me know if you have a page too!  My page is at:

 http://www.facebook.com/#!/pages/Remicade-Dream/142092942551992

I’m seeing the spine guy and the new rheumatologist on Tuesday, so I’ll check in after that and let you know how everything goes.

Summary

Friday, April 8th, 2011

Pills

In 2010, I had:

29 doctor’s office visits

19 sets of labs drawn

17 physical therapy appointments

8 trips to the hospital for Remicade infusions

3 trips to the hospital/urgent care for other reasons

96 prescriptions filled (not including Remicade)

 

And the sad thing is, these numbers are smaller than I thought they would be.

Is This Remission?

Monday, August 16th, 2010

Question mark

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?

Lucky Seven?

Saturday, July 17th, 2010

642736_lucky_seven

Sorry I’ve been absent from my blog for so long.  I’ve been taking a kind of “vacation” from all things RA, while I am also literally on vacation.  The RA vacation was unintentional.  I’m spending the month at my parents’ house, across the country from where I live, and ever since I got here, I just haven’t felt like dealing with RA.  I’m still taking my meds and everything, but I’ve stopped keeping my health journal, and I’ve been pushing myself a little too hard, trying to feel “normal.”  It’s starting to catch up with me a bit… so here I am, reminding myself that I need to give the RA a little attention.  (Damn… this really interferes with the nice denial streak I had going!)

My rheumatologist recently made the decision to increase my Remicade to seven vials.  I know there have been people on higher dosages, but still, this seems pretty high to me.  It also makes me one of his highest-dosage patients.  I have my fingers crossed that seven will be my lucky number.  I think I’ve been really determined to prove that this is the case, so I’ve been ignoring the slow, creeping return of my symptoms since the infusion.  (The first week, I think, really WAS good.)

 Because of back-to-back UTIs, I wasn’t able to get my infusion when I was supposed to, right before my trip.  So I ended up having to make arrangements to see a new rheumatologist here in the state where my parents live.  My hometown rheumatologist was great about sending him my records and labs, and I also came to the visit prepared with copies and information for him.  I’ve written before about my infusion experiences, and this was a chance to see yet another environment.  But I’ll write about that another time… long story short, it was a basically good experience.

This was the first time I’ve had seven vials, and I was absolutely determined that this time it would work.  I had also just had a landmark birthday the day before the infusion, which doubled my determination.  I feel that in general things have been on an upswing, and the new rheumatologist seemed to think so too.  It’s nice to have fresh eyes looking at your case sometimes, and he said that from my most recent labs and my joint examination, I actually look like things are beginning to be controlled.  There are just two stubborn blood numbers that are going up and not down, but that doesn’t necessarily mean that I am getting worse – sometimes blood numbers just do funny things.  I’ve also been questioning things lately, wondering how much of my fatigue and achiness is really the RA as opposed to my recent problems with adrenal insufficiency, or even muscle weakness due to not exercising.  (The adrenal insufficiency, by the way, seems to be reversing itself beautifully, and I am finally off prednisone!  Yay for something good!)

So all of this determination and pondering and questioning have led to a kind of thinking that goes something like this:  My blood numbers look basically very good.  My joints look great.  My AM cortisol and ACTH levels are now in the low normal range instead of the basement.  Going off prednisone, shockingly, did NOT result in a major flare (Hallelujah!).  Therefore… Maybe my RA is not really active right now.  Maybe I need to start testing this a little and find out what’s really up.  Maybe I need to build up some strength after being unable to do things for so long.

I really don’t know whether this is denial or not.  All I can tell you is that I’m not doing so well right now.  And it’s giving me a chance to look at something else: my deep need for an EXPLANATION.  I can’t just accept that I’m feeling tired and achy and cranky – I need a label to put to it.  I can’t make sense out of feeling this way while my inflammation markers are low.  I’ve always had aggressive sero-positive RA.  I am realizing that it must be damn frustrating to be sero-negative, when you feel like crap and know something is wrong and nothing is showing up on labwork.

Interesting… this blog entry has taken a completely different turn than I expected.  I was just going to come on and write a brief note about hoping that seven will be my lucky Remicade number.  Who knew all of this was going on?

I guess that’s why we do this blogging thing…

Hope

Thursday, May 6th, 2010

Hope is the thing with feathers
That perches in the soul,
And sings the tune without the words,
And never stops at all,

And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.

I’ve heard it in the chilliest land
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.

 - Emily Dickinson

I was in the middle of writing a long blog post, but I suddenly erased it.  It was full of medical details and information, and it made me think of this post that WarmSocks over at ∞ itis wrote.  I think it’s great to share medical details on our blogs - this is how we learn things and support each other.  But today, for this topic, getting into the nitty-gritty is really a defense mechanism for me, a way to avoid talking about what I really need to talk about.

My husband and I have decided that we really want another baby.  The post I deleted got into all sorts of complicated medical reasons why this may not be the best idea.  All of that is interesting, but isn’t the main point.  The main point is this:  Yesterday we went to see a high-risk OBGYN for a pre-conception consultation, and came away from the meeting feeling optimistic and hopeful.  We asked him to give us an honest, straightforward assessment of our risks and challenges, and he surprised us by saying that he thinks that our chances of a healthy pregnancy are excellent.  Even better, he made immediate plans to consult with my endocrinologist and rheumatologist to form a plan for my care that will make everyone comfortable.

So unless things change, we are going to try.  We know that we may not succeed, for all of the reasons I outlined in the post I deleted.  :-)   We know going in that it will be high-risk if we do succeed.  We also know that life with two children will be more challenging than life with one, especially if my RA or other conditions worsen.

But right now, I choose to focus on hope.

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.

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.