Posts Tagged ‘Denial’

Two Graduations

Friday, May 20th, 2011

P1020838

As some of you know from reading this blog, I completed my doctorate earlier this year. This week, I attended my official graduation ceremony (pictured above). It was an incredible day on so many levels.

There were times when I thought it would never happen. I entered my doctoral program as a young, healthy single woman. I left it as a married woman with a child and RA. In many ways, my memories of my years as a doctoral student are inextricably tied with my journey with RA. I struggled with the label “disabled,” fought against the idea of using the disabled services offered by my university. This struggle lasted right up to the end, when I accepted a disabled parking permit for my graduation day but still insisted on walking in the ceremony itself, instead of taking disabled seating. I also did something foolish – at the end of the ceremony, my friends got impatient with the logjam at the steps leading down from the bleachers where we were seated, and opted instead to jump down the bleachers themselves. I jumped with them, and paid for this decision with two days of pain. Maybe this was worth it for the chance to feel like a regular, non-sick person for a day. Or maybe it just shows that on some level, I still wrestle with denial.

Either way, I am still amazed that I made it. I was diagnosed with RA and also got pregnant during my first year in the program. I had to learn to slow down, pace myself, accept the reality of a later graduation date than I had originally anticipated. I learned to use voice-activated software and used it to write a large chunk of my 227-page dissertation. I also had to balance all of this with taking care of a baby. Nothing went quite the way I planned it – but I finished, and now my son calls me Doctor Mommy. :-)

There was also a second graduation in recent months, one that was a little harder to take. I graduated from this:

new disabled temp

 …to this:

new disabled perm

Logically, I know that this is a good thing. With the temporary permit, every six months I had to deal with the logistics of getting the documentation from my doctor and then endure a miserable, frustrating trip to the DMV, plus pay a fee. Now I can renew by mail in two years, without having to provide any more documentation or pay any money. But still, the idea that I am “permanently disabled” is hard to swallow.

The reason this came to pass is that the law in my state says that a person cannot have more than six consecutive temporary permits. The fact that I have means that I have been using disabled parking permits for three years now. That, too, was hard to face. I really never stopped thinking of myself as “temporarily” disabled; I guess the state sees it differently. I know that this doesn’t mean anything from a medical perspective, but it was sobering to realize that it really has been that long.

In time, I would like to be grateful for the second graduation and the conveniences it brings. For now, I will focus on celebrating the first graduation.

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…

My Inner Geek

Thursday, June 17th, 2010

Star-Trek-Voyager-p35

Okay, I’m about to reveal my true geeky nature to my blog readership… any fellow geeks out there?

Lately RA has given me (or forced on me) quite a bit of couch time, and I’ve been using some of it to catch up with reruns of Star Trek: Voyager.  Although I was a faithful follower of Star Trek: TNG, I never got interested in Voyager when it was actually on.  I started watching the reruns somewhere in the middle of the series, and they’ve come and gone on different TV stations over time, so there are still early episodes I’ve never seen.

For those of you not familiar with Voyager, the basic premise is this: The Federation Starship Voyager, while on a mission to track down a renegade enemy ship, is swept by a powerful alien force into a distant part of the galaxy called the Delta Quadrant.  The alien responsible for this promptly dies, leaving the crew stranded.  Traveling at top speed, it will take them 75 years to get back home.  The enemy ship is there too, and the two crews decide to join forces and make the journey together.  (There’s more to it than this, but this is the basic idea.)

Recently, I was watching one of the first-season episodes – the sixth episode, actually, which is titled “The Cloud.”  At the beginning of the episode, the captain, in a log entry, says, “Our journey home is several weeks old now, and I have begun to notice in my crew, and in myself, a subtle change, as the reality of our situation settles in.”  She discusses this with her first officer, and he mentions that the crew is going through a natural grieving period.

I don’t know why, but this really struck me.  A grieving period.  Suddenly, I realized how much Voyager is like life with RA.

In Voyager, the crew’s whole life is suddenly changed by a force outside their control.  They are light-years from the lives they knew, and may never get back there.  They have to learn to coexist comfortably with enemies.  They have limited resources, and need to learn to use them carefully (spoons, anyone?).  The future is a giant question mark.  Their relationships change, too.  In a later season of the show, when the crew finally finds a way to communicate with people back on Earth, they find that some people have given them up for dead and moved on with their lives, while others are still waiting faithfully.  They also form new relationships with each other and with new people they meet during their travels, some of which are stronger than the ones they’ve left behind. 

But what interests me most is the captain’s approach to the mission.  Her primary goal is to get her crew back to the Alpha Quadrant, and she never gives up hope that this will happen.  At the same time, though, she takes advantage of the opportunity to explore this new part of the galaxy, even though doing so sometimes takes them further away from their goal.  She also encourages the crew to make their lives happy and enriching along the way.  They don’t spend every moment focusing on the need to get back home.

Sometimes, especially in the early shows, the crew believes that they have found a way home, and are crushed when it doesn’t pan out.  (This always reminds me a little of Gilligan’s Island.)  As the show evolves, less time is spent on this kind of plotline, and more on the life they have built for themselves in the Delta Quadrant.  And yet, this isn’t accomplished by giving up on the goal.

I’ve often wondered if this is possible with RA.  It seems like the perfect way to be, really.  On the one hand, I never want to give up on the goal of remission.  On the other hand, I don’t want to be so obsessed with it that I miss the opportunity to make my life as rich as possible, right here, right now.  If the Voyager crew had spent all seven of their years in the Delta Quadrant focusing on nothing but getting home, it would have been a boring show.  It also would have been boring if they had given up hope and settled on a nice planet somewhere.

I guess I just wish I knew for sure whether or not I’m going to get “home” someday.  But that’s not the way it works in real life.

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.

The Acceptance Experiment

Friday, March 19th, 2010

Bunsen-Beaker-web

I was feeling tired and fed up last week.  I felt that my world was getting smaller all the time because of this stupid RA, and I was sick of it.  Then I read this post by Rheumatoid Arthritis Warrior, and I could really, really relate.  I would have loved to just press that eject button RA Warrior described – just quit the whole damn thing – but, of course, I couldn’t do that.  Still, I needed a break, and badly.

So I started thinking about what kind of break I could take.  I’ve done the Denial Experiment before – the one where I decide that for a week, I will just act as if I don’t have RA and live life like a normal person.  Well, that one never lasts long – by about the third day (often even sooner), my body lets me know that it just ain’t gonna happen.  So what could I do instead?  And exactly what kind of break did I need?

I thought about the things that were bothering me most, and the main thing that jumped out at me was this: RA had become the central fact of my life.  When I wrote about my world getting smaller, one of the things I said was that I no longer had anything to talk about with friends except illness, and that illness just isn’t that interesting a topic to most people.  Also, I know someone who talks about nothing except her aches, pains, and health problems, and I can’t stand to listen to her.  She’s never happy, never positive, and never interesting.  I don’t want to be her.  But lately I have become exactly that person.  (My husband kindly points out that no, I haven’t – the person I’m describing complains but never does anything to try to make it better, and keeps putting off surgery she’s needed for about three years now.  So okay, I’m not EXACTLY the same as her… but still.)

So I decided that RA was just plain getting too much airtime in my life.  My husband agreed that we seemed to spend most of our time talking about it and almost nothing else.  I was getting tired of listening to myself sound whiny.  I was spending too much time every day reading RA blogs and discussion boards.  I was feeling exhausted and burned out and didn’t want to post on my own blog.  I just needed a mental break from the subject of RA.

Here’s what I decided to do:

If denial didn’t work, maybe acceptance would.  Just for a week, I would behave as if I had already reached the acceptance point, and RA had become an integrated part of my life.  I would take my meds every day, do the things I need to do to take care of my health, not push myself too hard or pretend I didn’t have RA.  But I would also stop talking about it.  If I had a bad flare, I would tell my husband that I wasn’t doing well and would ask for help, but then I would stop complaining.  If I talked to a friend and they asked how I was doing, I would give a very short, honest answer like “About the same” and then talk about something else.  I would also stop reading RA blogs and boards, just for a week.  It would be, I hoped, like hitting a reset button.

So how did it go?

First, I learned that I really do complain a LOT.  Complaining words were on the tip of my tongue way too often.  So I think it was good for my marriage and my friendships to cut back on this.  

But it was hard, too.  Really hard.  Three days in, I had a day when I was in a lot of pain, and I didn’t say anything.  By nighttime, I ended up crying.  (I rarely cry.)  My husband gently reminded me that the idea of the experiment was not to pretend I was fine – it was okay to say that I was in pain and needed help.  So I did, and found that saying it once was enough to get what I needed.

I learned that I really DON’T  have enough other things in my life.  It was hard to find things to talk about.  It also felt good when I actually did find topics, and my husband and I had better conversations this week than we have in awhile.  We both really needed to talk about something else, and I think we still do. 

Another discovery was that I really, really, REALLY missed the RA blogs and boards.  They have become a big  part of my life, and cutting them off left me feeling isolated and sad.  I do think that I’m on the computer too much, and that I need to cut back, so I really shouldn’t be checking them as often as I do.  But they serve an important function in my life.   

I’m still not sure exactly what I learned.  I felt both better and worse this week as a result of pushing RA to the background.  I guess the main lesson was one of moderation.  I need the RA online community, but I don’t need to check for new posts several times a day.  I need to vent, but not all the time.  I need to be honest and speak up when I am having trouble, but I don’t need to repeat it over and over.  And when I’m burned out and need a break from the whole thing, the Acceptance Experiment seems to be a better choice than the Denial Experiment.

The “D” Word

Tuesday, February 16th, 2010

handicap

On a lovely warm summer day in 2008, I was sitting in a restaurant with my sister-in-law.  She works at the same university at which I am a doctoral student, and summer classes had just begun.  I was nibbling self-consciously at my sandwich, aware of the 40 prednisone pounds I had gained since she saw me last.  All week, in fact, I’d been painfully aware of those pounds, experiencing again and again the shocked looks on the faces of classmates who hadn’t seen me in a year.  Since I was keeping silent about the RA, I had to live with the knowledge that most of them probably thought I had just let myself go.

My sister-in-law, who did know about the RA, asked me how I was doing.  I told her that so far, I was holding up pretty well, but I was concerned about my upcoming doctoral comprehensive exam.  Not because I was feeling unprepared, but because it would involve close to four hours of longhand writing.  There would be breaks, but still, I didn’t see any way I could possibly do it.

“You need to go register with the office of disabled student services,” she said, matter-of-factly.

Disabled?  Who, me?

“I don’t think those services are for me,” I said.

“Yes, they are,” she said.  “They do test modifications, so you won’t have to do the writing.  You’re entitled to them.  You need to do this.”

So, reluctantly, I went to the office.  They gave me forms and explained that my doctor would need to verify my disability before they could provide services.  So I called my rheumatologist’s office and spoke to his medical assistant.  And I have to admit, I thoroughly expected her to say, “No, those services aren’t for you – you’re not really disabled.”  But she didn’t.  Instead, she told me that this is done all the time for RA patients, and told me to fax her the forms.

About a week later, I was called in to the office at the university to meet with the director of disabled student services.  He stood up to greet me and held out his hand to shake, and it was immediately clear that he was blind.  Feeling embarrassed, foolish, and deeply fraudulent, I sat down in the chair across from him.

“So how can we help you?” he asked me.

I said, “I have rheumatoid arthritis,” and was surprised (and a little bit horrified) to find myself getting slightly teary-eyed.  Still deep in denial, I had said those words out loud to very few people.  I fumbled around for awhile, explaining that since it was still a relatively new diagnosis, I wasn’t really sure exactly what I needed – I had no experience with disabled services.  “A lot of the time, I’m completely fine,” I said.  “It’s just that sometimes, some things are hard to do.  But I don’t think I need much help…”

He was silent for awhile.  Then he said, “I always feel sorriest for students with conditions like yours.”

What?  This blind man felt sorry for ME?

He went on to explain that conditions like RA are hard to manage because they are both unstable and progressive.  Unstable, he said, because they change from day to day – you never really know how you’re going to feel, so it makes it very hard to plan, and also very hard to adjust.  Progressive, because they tend to get worse over time.  Then he told me the story of the degenerative illness that took his sight.  Each time things worsened, he had to adjust to a whole new set of modifications – first, getting larger-print books, then reading with magnifying glasses, then having someone read to him, etc.  Finally, he was completely blind.  “Believe it or not, things got easier then,” he said.  “I knew what the limitations were, and I could make permanent adjustments.  The hardest part was the way things kept changing, and it was kind of a relief when they stopped.”

I had a lump in my throat.

Then he asked me not to think about the days when I was doing well.  “I need to hear about things at their worst.  We’ll make a plan that fits those circumstances, and have it in place for you.  That way, it’s there if you need it, and you don’t have to use it if you don’t.”

I heard myself describing days when it seemed impossible to get out of bed.  I talked about the time when I had to have shots in the soles of both of my feet and couldn’t walk at all for two weeks.  I talked about swollen fingers that prevented me from being able to write longhand, and made typing painful and difficult as well.  I talked about the deep fatigue and brain-fog that made a four-hour exam seem like torture.  It sounded to my ears as if I were talking about someone else, someone who actually needed help.  Someone who just might be disabled.

He described the options available to me, and put all of them into the official plan, to be used as needed.  I was entitled to use voice-activated software for my doctoral exam, and would take the exam in an adaptive lab instead of with the other students.  I would be given extra time to complete the exam, as well as breaks “for fatigue and pain management.”  I also had the option of using a “human scribe.”  (This one seemed bizarre to me – my sister and I later cracked jokes about how she could be my scribe, and I would buy her a funny hat, snap my fingers at her (if I could) and call, “Oh, scribe!” when I needed her.)  If I needed to, I could take the exam over two days instead of one.  I was entitled to record lectures or have someone assigned to take notes for me.  I could even have a research assistant, who would run around the library gathering books for me.  I could get a disabled student parking permit once I got a regular one from the DMV (it had never occurred to me to do this).  I still couldn’t believe that I was actually entitled to these things, that I might actually need them. 

That was when my denial (the other “D” word) began to crack for the first time.  I went home after this conversation and cried for a long time.  I felt all kinds of things – strangely humiliated, sorry for myself, aghast and guilty that the director had felt sorry for me.  Still felt fraudulent, too.  And I was still surprised that it had gone so easily, that both the doctor and the university agreed that I needed all of this help.

The exam came and went, and I did end up using a few of the modifications.  I continued to feel guilty and horrible as I sat in the adaptive lab, using the voice-activated software, surrounded by students whose disabilities were more visually obvious than mine.  I also felt frustrated by how poorly the software worked, how the computer kept freezing up, how little tech support there was for this tiny little lab.  I started to understand that while it was great that the university offered disabled services, they still had a long way to go before things could be considered truly equitable.

Confession time here – I’ve always said this blog will be completely honest:  I am a college professor, and in the past, I felt a secret frustration whenever a student handed me a sheet from the disabled student services office, describing their test mods.  Of course, I always complied, and I believe I was always pleasant and professional about it, but every time I saw one of those sheets, I knew that it was going to mean extra work for me.  So it was hard for me to go to the professor in charge of the exam and give her my sheet, knowing that she, too, might be frustrated by the extra work.  Now, of course, I’m ashamed of those feelings.  (Do you think less of me now?)

A few months later, my sacroiliac joint flared up and I had to use a cane to walk.  One day during this time, I drove to the campus where I teach and couldn’t find parking anywhere except at the bottom of a big hill.  The only way up that I could see was a large concrete staircase with over 100 steps.  I hobbled up the steps with my cane and arrived at the top exhausted and in pain.  The next day, when the situation repeated itself, I found the “accessible” route from that parking lot – a long, winding wheelchair ramp up the hill.  Great for people actually in wheelchairs, but the distance was MUCH longer for someone walking.  So, finally, I bit the bullet and asked my rheumatologist to fill out the forms for a disabled parking permit.  And again, I was surprised when both he and the DMV granted it, easily and without question.  Seems denial was still alive and well…

Although my denial still comes out to play fairly often, things have changed somewhat since that time.  I have gotten used to the parking permit, and use it more often than I expected to.  I’m not quite guilt-free about it, so I try not to use it when I’m doing okay, and I still feel weird when people watch me getting out of my car.  I used the free disabled shuttle when I went to the zoo.  And a few months ago, I was in Costco with my toddler and a full cart when overwhelming fatigue suddenly hit.  (Don’t you love how RA does that?)  I went over to the customer service desk, smiled at the person there, and asked, “Is there anyone who can help me get my things out to my car?  I’m disabled.”  No tears in my eyes, no lump in my throat – the word came out surprisingly easily.  And the Costco workers were happy to help.

Rebellion

Tuesday, December 29th, 2009

jamesdean

 Buckle your seatbelts… this one will be part pity party, part confessional, part angry rant!

A few weeks ago, I set out with the intention of circling my wagons and writing a series of posts about the many things I do (or don’t do but would like to) to manage life with RA.  So I wrote a post about my organizational tools, and another post about exercise.  But then a funny thing happened.  Somehow, writing about these things (especially the organizational tools) made me depressed.  Maybe seeing it in print made me realize how big a part of my life this RA thing is, and how much I actually resent having to do all this stuff.  (Guess I’m still camping on the banks of that river in Egypt after all – when do I finally get out of that stage?)  And the sad thing is, these two posts were only the tip of the iceberg of the many, many things I need to do to stay well.

So I didn’t just fall off the wagon – I jumped off the wagon, then tipped it over and kicked it, hard.

This is a bit of an exaggeration, since I haven’t abandoned all of my healthy habits.  For example, I didn’t stop taking my pills – but I did get a little careless with the times at which I took them and with the steps I usually take to protect my stomach.  And I went faithfully to my Remicade infusion last week – a really negative experience I’ll write about another time, since I think it set off this whole rebellious phase I’m in.  I’ve been keeping my promise to exercise more, and I’ve also been going to my physical therapy appointments.

But all sorts of other things, big and little, have fallen by the wayside.  I’ve been eating really badly.  I haven’t been keeping my health journal.  I’ve stopped using my neti pot – this was something I started doing to give myself a little extra protection from colds, flu, and allergens, and it really did seem to do the trick.  I’ve stopped putting Refresh PM gel in my eyes at night, which I am supposed to be doing for my Sjögren’s Syndrome.  I’ve stopped eating yogurt to protect my stomach from my meds and have abandoned my fiber supplements.  On my last methotrexate day, I neglected to drink extra water before, during, and after taking the pills, and was completely flattened by nausea, headache, and all sorts of ickiness; ruined the whole day.  And I know better by now.  There are other things too, but this gives you a general picture.

Yesterday was my wedding anniversary, and my husband and I had planned a one-night getaway (without our son) to a resort hotel and casino.  I wore a sexy skirt that was a bit too tight, and knee-high boots that used to be perfectly comfortable before RA.  Boy, did I get to see how things have changed.  I barely made it through dinner before we had to go back to the room so I could change – and what a relief it was to throw on jeans and my Dansko clogs!  But it also upset me a lot.  I remember the days when I could tolerate a slightly-uncomfortable-but-cute outfit.  After that, we went down to the casino and played slot machines and other games, went back to the restaurant for cheesecake, and generally had fun before collapsing in exhaustion around 3 AM.

Things came to a head this morning.  I woke up feeling like a bus had hit me.  Okay, we did stay up until 3 AM – but we also slept until 11!  Hardly a serious sleep deficit.  And the other sad thing was that I didn’t have a drop of alcohol all night.  We also stayed pretty sedentary for most of the night – didn’t go dancing, didn’t walk far, didn’t do anything more strenuous than pushing buttons on slot machines.  So this horrible, hungover feeling didn’t feel… earned. 

The worst, though, came at breakfast.  We went down to the restaurant around noon.  I usually take my pills at 10 AM, and I was really feeling it.  So we ordered our food, and then I decided – stupidly – that since the food would be coming in just a few minutes, I could go ahead and take my pills.  (This is a lesson I thought I had learned early on – I absolutely have to eat before taking the pills.  I guess maybe the lesson needed repeating.)  Well, the food came pretty quickly, but the pills beat it to my stomach, and I started feeling incredibly nauseated, dizzy, and generally awful.  I had ordered French toast, which looked wonderful, but I could barely get the fork to my mouth.  I forced myself to eat some of it and got a glass of milk into my stomach, knowing that it would help, but had a truly miserable half hour before it worked.  And now it’s night, and I’m STILL not feeling well.

Now, this is where the angry rant comes in.  IT ISN’T FAIR.  My “wild night out” was incredibly tame to have caused such suffering.  My husband had the same night I did and feels perfectly fine.  Friends of mine can stay out all night drinking, get hardly any sleep, and yes, they feel crappy the next day - but then it’s gone.  If past experiences are any indication, I will be paying for this for days. 

I just want some NORMAL LIFE.  I want to be able to overindulge at Christmas.  I don’t want to have to do a million little stupid things every day just to keep this body working.  I want to be able to have the occasional night out without so much suffering.  I want to be able to drink alcohol.  I want to tire myself out running around shopping, going to parties, doing all those fun holiday things and just have it be NORMAL TIRED, not bone-crushing pain.  I actually did very little running around this year, and still paid for every minute of it.

I really thought I had made peace with my trade-offs.  I knew that because of the prednisone I am taking, going off my diet for even a short time would have much bigger consequences than it normally would for me.  I had decided that I was okay with gaining extra pounds, and was willing to work hard to take them off when the holidays were over.  I knew that every event I chose to attend meant at least a day of recovery.  But somewhere along the line, I stopped being okay with these things.  I am NOT okay.  I am ANGRY.

 I think this happens to most people with RA once in awhile.  We just get angry, and tired of the whole thing, and start pushing at the boundaries to see where they are.  Some people go farther than I did and just stop taking their meds.  (I’m not talking here about people who choose not to take meds because they want to treat their RA naturally – that’s a whole different thing, and a choice I respect.)  Some people do things like continuing to drink alcohol regularly even though they are on methotrexate or have liver conditions.  My forms of rebellion are smaller than these, and this is why it upsets me so much that they have had such a huge effect.  I NEED all of these little maintenance things, and it really pisses me off.

Anger – another one of the stages of grief.  This is not the first time I have visited this stage, and it probably won’t be the last.  I am tempted to censor this blog entry.  It’s not positive, it’s not proactive, and it doesn’t put a happy face on RA, or make me look particularly strong in my coping.  Anger isn’t pretty or easy.  It is where I am right now, though.  And I did promise that next time I had a pity party, I would invite you!

So here I am, good and angry.  Here I am, paying for every moment of fun I’ve had over the holidays, tallying it up and realizing that it’s such a pitifully small amount of fun for so much angst.  RA SUCKS.  It just does.

*Whew* 

I am still trying to decide what to do about my wagon train.  It has become clear to me that I have to resume my healthy habits.  They were doing more for me than I thought they were.  Maybe I was just hoping they weren’t necessary.  I don’t know if writing about them will just set me off again, or if it will be good for me.  Maybe both?  Maybe this angry phase is necessary to move out of the denial I keep thinking I’m not in.  (Denying my denial?)  Maybe I need to stay with it, move through it.  Maybe it can unblock me, get me writing music again, get me feeling things I haven’t been letting myself feel.  I also know that when I’m in a better place emotionally, I realize that I’m lucky that there are things I can do that actually make some difference in how I feel.  So maybe I will resume writing about the wagon train.

Just not tonight.

Wagon Train Part One: The Organizational Tools

Friday, December 4th, 2009

As promised, I’m going to be writing about my circle of wagons - the things I do (or don’t do but want to do) to help me manage life with RA. Some of these things are purely practical, some are mental, emotional or spiritual, and some are physical. I’m writing this mostly for myself, as a reminder of my own goals, but maybe some of the ideas will help you too! And I’d love to hear yours along the way.

When you are managing a chronic illness, there’s a lot of information to organize. Call me crazy, but I enjoy reading about other people’s organizational systems – I sometimes pick up new tricks, and sometimes just find validation for what I’m already doing. So here are some of the things I do.

Wagon #1: Health Journal

 Boy, did I resist this one at first.  I think it was my old friend denial again – I didn’t want to admit how major a part of my life my illness had become.  But when I was at various doctors’ offices, I had trouble remembering how long specific symptoms had been going on, how long I had been taking certain meds, etc.  I tried keeping a loose sort of log of symptoms, but found that my information was incomplete – I would often overlook or minimize things that turned out to be important.  So I finally gave in and bought this:

Health Journal

For a long time (and even now sometimes) I jokingly called it “The Hypochondriac’s Dream Journal.”  For each day, it provides two pages of space to write down all kinds of specific information, including front-and-back drawings of a human body for marking places that have pain, skin issues, etc..  My worry was that it would make me intensely focused on my symptoms, and sometimes I think it does do that.  But on the whole, it keeps me organized, and it’s been really useful for those doctor visits.  There’s a section in the back that lets me make notes about questions I want to ask my doctor, so I always go in prepared, and anything he/she asks me can easily be looked up.  It also doubles as a diet journal – there’s a whole section for recording what you eat, with blank columns so that you can choose to track whatever you wish (calories, fat, fiber, WW points, carbs, etc.).

Here’s what the inside looks like:

Health Journal inside

Since it’s designed for people with a variety of conditions, I don’t use all of it – for example, I don’t need to monitor my blood sugar.  I don’t write in it every day, either – just when things change.  Unfortunately, it’s one of the wagons I tend to fall off, especially when things are going badly.  It’s ironic – when I’m flaring, I seem to lose the will to keep this journal going, and that is EXACTLY the time when I most need to be keeping track of symptoms.  Anyway, I’ve started it up again, and ordered a new one for the new year.  I am also making it a goal to view the journal differently – instead of worrying that it will put too much focus on my symptoms, I would like to see it as a place where I can record them so I don’t have to think about them again.  Close the cover of the book and get on with my life…

Now, on to Wagon #2:  Managing my Medications

I haven’t fallen off this wagon, amazingly enough.  It’s been tricky lately because I recently had to start two new meds that must be taken twice a day on an empty stomach, while my other meds are taken twice a day with food.  Since “empty” is defined in this case as “no eating 2-3 hours before or 1 hour after taking,” this means that I now have to remember to take pills FOUR TIMES a day.  The morning dose of the new drugs is easy to handle – I just take them when I wake up and don’t eat for an hour.  The night dose, though, is no fun to schedule, especially if I end up eating dinner late. 

I’m pretty organized with my medications.  I take about 20 pills on an average day; some pills are daily, while others might be taken four times a week, once a week, or once every several weeks (like the Zyrtec I use to pre-medicate before Remicade infusions).  Then there are the “wild cards,” like the times when I have to do a pred taper or take an antibiotic.  I didn’t enjoy opening all the little bottles every day, so I decided to buy a pill kit and stock it every week.  I haven’t gone to a four-a-day one yet – I just keep the bottles for the empty-stomach pills next to my bed.  This is the pill kit I use for all the others:

Pill kit

Rheumatoid Arthritis Guy has a much cooler one, which he shows in this post.  Maybe for Christmas…  (Okay, that was a little depressing – I don’t want a pill kit for Christmas!) 

I found that all of the different pill schedules were getting confusing, so I also designed an Excel spreadsheet to help keep them straight.  I make a new spreadsheet every month – across the top are columns with the names of all the meds, and down the side are the dates.  Then I fill in the quantities of each pill for each day.  This also doubles as a medication record – at a glance, I can know exactly how many months ago I took that antibiotic, or how long I’ve been on a specific med.  I was going to show a picture of one of my spreadsheets here, but it was too big – and besides, I’d rather not post a list of my medications on the internet!  (If you really want to see one of the spreadsheets, you can ask me.)  On Saturday nights, my husband and I get out the spreadsheet and all the bottles and we stock my pill kit together - he opens the bottles for me, hands me the pills, and tells me how much of each one to put in.  Then he double-checks it for me, in case my brain fog has taken over!  Doesn’t that sound like a romantic date?  ;-)    

To help me remember to take my pills, I have recurring alarms set in my cell phone.  (Fortunately, my phone lets me store 5 different alarm times!)  The music I chose for my pill alarms is pretty, almost elfin.  Cheers me up a little, especially when my son dances to it.  Most of the time, I am home at the times when I need to take pills.  For those occasions when I have to be out, I bought myself this pretty little pill box for my purse:

Pill box

When I went onto Amazon.com to buy one, I was amazed by the incredible variety of available pill boxes.  They had them for just about every conceivable interest, and I considered ones with pianos on them, or cats, or ones with amusing photos of bad girls that double as condom holders.  In the end, I picked this one because I liked the image of the healing hands – I’m interested in things like Reiki and other energy healing modalities, and I thought it might be nice to store my pills in a place that gave them a little extra good energy!

Now for Wagon #3:  Keeping Track of Medical Expenses

This wagon could use some serious patching.  Before I had RA, this was something I never thought about.  A bill would arrive from a doctor’s office and I would pay it – simple.  I never thought to look for mistakes, and never looked at the EOBs the insurance company sent – I don’t even think I knew what they were for.  When I started developing multiple medical problems, all of this changed.  Also, we opened a Flexible Spending Account with a credit card attached, and the FSA people started asking us to provide receipts and/or EOBs to justify our expenses.  So it became important to pay attention. 

My insurance company’s website allows clients to download all of their EOBs, so I keep them in my computer and shred the paper ones that come in the mail.  I’d like to go paperless on this, but they haven’t offered that option yet.  Every Monday, I check for new EOBs, look through my inbox for new bills, and compare them.  And yes, I have started to find mistakes.  One doctor billed me twice for the same visit, one for procedures I never had, and the insurance company has occasionally failed to cover things they should.  So there can be quite a lot of work in tracking these things down.  I keep my bills, receipts, and other paperwork in an expanding file folder, which gets bigger all the time.  The FSA information is also online, so I check that too, making sure my payments have cleared and don’t require receipts.  If they do, I get them together for faxing.

I have to admit that I didn’t enjoy starting to check the EOBs.  The first time I saw my Remicade appointment listed as “chemotherapy,” I got pretty upset.  But reality has to be faced…

Even though I’ve gotten better at this, I’m still not good at keeping track of visits and remembering what happened.  My rheumatologist’s billing office is regularly MANY months behind, so by the time I get the bill for a visit, I can’t remember – did I get shots?  Have blood drawn?  Was it a Remicade visit or a regular checkup?  The bills are usually full of mistakes when I compare them to the EOBs, so it would be good to know exactly what really did happen. 

WarmSocks over at ∞ itis recently shared a snippet of the spreadsheet she uses to keep track of her medical visits.  (She has great organizational systems – she’s shared others before.)  What a good idea!  Given that I have spreadsheets for my pills, you would think I would have considered doing this before!  She keeps track of the date of visits, the provider, the purpose, charges, etc.  I’m going to borrow this and start one in the new year.  Since every insurance company handles things differently, I might modify the columns – for example, I have a PPO which covers only 90% of most procedures, so it’s important for me to have a column showing exactly what was done in the visit so I can see if it was charged accurately.  Anyway, thanks, WarmSocks! 

 I also keep copies of all of my lab reports, but have fallen apart a little on this – I designated a binder for them, but keep forgetting to put them in…

By the way, Jenni over at ChronicBabe.com offers a “Chronic Babe Toolkit” that has all kinds of useful suggestions for organizing your information, as well as a weekly “Goodie Bag” newsletter.  You can sign up for them here.

Acceptance or Giving Up?

Friday, November 13th, 2009

Stivers-10-8-05-Acceptance

I saw an article posted on an RA discussion board recently.  The headline read, “Acceptance of Chronic Illness Helps People Move On: Hoping for recovery may actually prevent happiness, researchers say.”  The article went on to explain that there is a “dark side” to hope, since it sometimes keeps people from getting on with their lives and making the best of their situations.   

This leads me to a question I have often pondered:  What is the difference between acceptance and giving up?  People use words like “fight” and “battle” to describe illness – as in “So-and-so passed away after bravely battling cancer for years.”  As seen in the example I just gave, “battling” is no guarantee of winning.  Yet society seems to expect it of sick people.  It’s seen as “braver” to “battle” a disease rather than accepting it.  But with a chronic disease like RA, is this really the right idea?

On the other side of things, dealing with RA is often viewed as a grieving process.  Since the disease is progressive, the stages of grief are sometimes visited again and again as we lose abilities.  The five stages of grief, as defined by Kubler-Ross, are denial, anger, bargaining, depression, and acceptance.  I’ve shuttled back and forth between the first four, never quite reaching the fifth.  But the article I just read suggests that acceptance is an important part of being able to move forward.  A lot of other people with chronic illnesses agree, and say that their lives are better and happier since they have stopped fighting reality and decided to adapt instead.

Recently, I was talking with a friend about my RA for the first time.  She was very understanding, since she had known someone with RA.  But when I mentioned that I had a cane now that I rarely use, she exclaimed, “Don’t use it!”  Then she explained that using the cane would send a signal to my brain that I needed it and make me dependent on it.  She talked some more about the power of the mind and spirit to influence the body, and urged me to fight the disease. 

Sometimes I agree with this.  This is why I fought so hard when my physical therapist urged me to begin using wrist braces and a cervical collar.  (Well, that and my denial.)  I also fought the concept of getting a disabled parking permit, which I now use and appreciate.  I fought the concept of buying clunky but comfortable (and expensive!) Dansko clogs, which are now the only shoes I can wear without terrible foot pain.  Did the shoes create dependence? 

My husband would say no, and remind me that I was limping around, unable to walk any sort of distance, until I got those shoes.  He reminds me that all of the adaptations I mentioned came about because they were NECESSARY.  The cane, too, was necessary when I got it.  It isn’t anymore, and it sits in a corner.  Doesn’t that prove that I didn’t become dependent on it?

I don’t know where the line is between “battling” the illness and just plain denial.  I don’t know where the line is between “acceptance” and giving up.  I know that I would like to settle these issues so I can choose a path and commit to it.  Right now there’s a certain amount of waffling around and second-guessing that wastes mental energy.  I think I am afraid of choosing wrong. 

I think that something exists out there that embraces the best of both – accepting the reality of the illness while still hoping and working towards a possible future without it, or at least with a lasting remission.  I have no idea how to get to it.  I know that it’s not much fun for me, going from denial to anger to bargaining to depression and back again.  I’m clear on the fact that it’s not healthy for me to chase pipe-dream “cures”.  I know that whenever there’s a med change and I tell myself, “This time it’s really going to work for good,” the disappointment is sharper when it doesn’t.  I also know, though, that positive thinking is good.

I have no answers here.  I guess I’m just using this space to wrestle with these thoughts.