Posts Tagged ‘RA Community’

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!

Butt on Bench

Friday, January 18th, 2013

(This title will make sense to you in a little while, I promise!)

Today I read this great post over at The Seated View. Lene writes about her goal of writing a book, and how to balance that goal with the realities of chronic pain. One of the goals I’ve set for myself this year is to write more, so this post came at just the right time for me.

About a decade ago, I read the book “The Artist’s Way” by Julia Cameron. The author talks about the practice of writing “morning pages” – three pages a day of free, uncensored writing done longhand first thing in the morning, a pure spill of thought/emotion onto the page. (Lene refers to a similar practice described in “Writing Down the Bones” by Natalie Goldberg, another book I’ve read.) This was before I had RA, so I was able to do the morning pages with no issues. A few years ago, I revisited “The Artist’s Way” and tried to do the morning pages, but found that there was just no way my stiff wrists would let me write three longhand pages first thing in the morning. The author was very clear on the importance of writing longhand, pen on paper, to activate the creative flow. So I wrote to her and asked if she had any thoughts on how to adapt this exercise for someone with a disability. I never got an answer.

Lene writes, “So what’s a writer with chronic pain to do? You mess with the rules to find a way that works for you.” And she’s right. I think this is something I haven’t always been willing or able to do. But I’m working on it now. When I set my writing goal at the beginning of January, I made a list for myself of different types of writing tasks and different ways to do them. This gives me options on days when I’m not doing as well, so at least I can do SOMETHING every day.

Lene also talks about the Dorothy Parker quote: “Writing is the art of applying ass to seat.” Which brings me to one of my other goals:

P1060148

 

The pianist’s version of Ass to Seat – what I like to call “Butt on Bench.”

Operation Butt on Bench has been going on for several months now. Before that, I was engaging in all-or-nothing thinking about my practice. I used to practice for at least three hours a day, and that hasn’t been possible for a long time – so I stopped practicing at all. For a professional musician, this isn’t acceptable.

So now my butt is on the bench every day, for ten-minute blocks. If it’s a bad day, I only do one block. Even on a good day, I take it easy – I am focused on building stamina slowly and carefully. What I do when my butt is on the bench also varies. For the first block of the day, and whenever I am having a bad day, I practice in exteme slow-motion. (This is good for the brain and the body, anyway – slow practice is highly recommended by a lot of musicians.) On a really bad day, I might study a score, watch YouTube videos of other pianists, or listen to recordings instead of playing. The point is to spend time being a musician every single day, for at least a little while.

It takes discipline for me to do this. It actually takes two different, opposing kinds of discipline. The first is the discipline of getting my butt on the bench when I don’t feel like it. The second is the discipline of getting my butt OFF the bench so I don’t injure myself or get into a flare. Both of these things are a real struggle for me.

Anyway, I’m grateful to Lene for sharing her thoughts. And I can’t wait to read the book that I KNOW she’ll finish.

Anybody Out There?

Wednesday, September 26th, 2012

It’s been a long time.

I haven’t posted in several months, because life got really complicated and difficult. Then there were technical problems that caused the blog to disappear for a little while. Between these two factors, I’ve probably lost a lot of audience members.

So I’m curious – is anyone still reading this? Please comment if you are. I’m still going through some rough times, and it would be nice to know that people are still out there. I’ll try to be better about posting, too.

Bye-bye, Facebook!

Saturday, February 4th, 2012

Just letting everyone know that I have disabled my Remicade Dream Facebook account and page, and I will probably be deleting them after awhile – I’m giving myself a grace period to see if I change my mind. There are a few reasons I’ve done this:

1. I’m spending too much time on Facebook as it is, and am trying to cut back. I already have a personal account that I check constantly. Having a second one just ended up feeling like pressure.

2. I’m really unhappy with some changes to Facebook’s privacy policies and bugs in the new Timeline. On my personal account, I’ve seen things slip through my very tight privacy settings because of bugs in the program. So I’m minimizing my Facebook presence in general. I still have a personal account because, unfortunately, it seems to be how all of my friends communicate these days and I would miss out on too many things if I stopped using it altogether. But I plan to post very little, and definitely nothing I don’t want everyone in the world to be able to see.

3. I’ve friended several different chronic illness-related groups and people on my Remicade Dream account, and I’m finding that every time I do go on there and start reading, I get stressed. There seems to be a lot of infighting, rivalries between groups, and general unhappiness. I don’t want to get involved.

4. I’m trying to take a step back from too much online RA information.

This last one is a tricky one. I’m in (knock wood) a really good place with my RA right now – this is the best I’ve felt in years. I have a strong desire not to disappear entirely from the RA community; I think that seeing people doing well gives us hope. (I know it always gave me hope in the past when I wasn’t doing well.) But I also feel the need these days to reclaim more of my life outside RA, and I want to put more time and mental energy into other things. So I plan to maintain the blog, keep checking in on an online group that has become very important to me, and keep reading the RA blogs I already read – but I don’t plan to seek out any new ones for awhile.

Anyway, I don’t think anyone will really miss the Facebook page. It didn’t get a lot of action anyway.

Inspired

Tuesday, November 1st, 2011

Every day I follow a whole bunch of blogs written by other people with chronic illnesses. Most of these blogs can be found on my homepage, in a sidebar called “Adventures in the Autoimmune World.” Since I don’t tend to leave comments as often as I should, some of these people have no idea how they inspire me, teach me, move me, or make me feel less alone. So today, I thought I’d mention some of the great ideas I’ve gotten from other people’s posts lately.

In honor of World Arthritis Day, Rheumatoid Arthritis Guy presented a challenge: Reclaim one thing. (You can read more about it by following the link.) In response to this challenge, I have decided to work towards taking back something that used to mean a lot to me: Irish dancing. I stopped doing it for practical reasons when I was first diagnosed with RA – I was having problems with my feet and it just became too hard, too painful. I stayed away from my dance friends and dance events because it made me too sad. Later, when my feet started feeling better, I still didn’t go back. I had simply gotten into the habit of thinking that I was limited, and I assumed that I wouldn’t be able to do it.

Now I want to challenge this assumption. It’s true that it might not work out. It’s true that Irish dancing isn’t necessarily the best thing for my joints. But I feel that I gave up too early and too easily. I don’t want to assume that I can’t do it – I want to KNOW whether or not I can.

One of the tools I’m using to work towards this goal is an online game called “Superbetter,” which I also learned about in a post by Rheumatoid Arthritis Guy. It’s in beta-testing right now, and out of respect for the programmer’s privacy, I won’t say much about my experiences so far with the game. In a nutshell, the game provides a framework to help you achieve health-related goals that you set for yourself. You can learn more about Superbetter here.

In this post, Carla from Carla’s Corner tipped me off to another great tool – www.myfitnesspal.com. This is a good FREE way to track your eating and exercise. I’ve only been using it for a little while, but they seem to have a great database of nutritional information. They also have a cool iPhone app, but I don’t have one – I still have a Dumb Phone.

Finally, WEGO Health has declared November National Blog Post Month. I’m too busy right now to do this, but some of my favorite bloggers are trying to post every day this month, and I’m looking forward to reading what they have to say. It’s made me think about participating in blog carnivals – something I generally don’t do. 

Anyway, I’m hoping that all of these ideas will help spark something in me. I’ve been feeling pretty unmotivated lately, and I really want to make some changes. I’m grateful for this community.

World Arthritis Day

Wednesday, October 12th, 2011

120-36-41.

If you don’t know what these numbers mean, please check out this page. In honor of World Arthritis Day, bloggers like me are posting their numbers, blogging, Tweeting, Facebooking, etc. to spread awareness about autoimmune arthritis.

By the way, please come and “like” my Facebook fan page! It’s getting very lonely over there!

In honor of this day, I am also reprinting the story of my diagnosis. This was originally posted in April, 2010 under the title “Rheumaversary.”

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.

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.

RA Superbitch

Tuesday, June 14th, 2011

I don’t even know how to start this post.

Late last night, I learned that one of my favorite bloggers passed away. Her blog, Confessions of an RA Superbitch, was funny, irreverent, and said so many of the things I’d love to be able to say. I don’t know the details of her death. A few months ago, she wrote that there was “some rather scary stuff happening with the RA.” Then one of her friends posted this week that she died peacefully at home with her husband and son. From this, I can only conclude that she died of RA complications.

This has really thrown me for a loop. When I read the news last night, I couldn’t stop crying. I didn’t know RA SB in person; I didn’t even know her real name. I’m not the type to cry when, for example, famous people die, or people I don’t know well. In general, I don’t cry much at all. So my emotional response was pretty intense and unexpected.

I think it’s pretty clear why. RA SB and I were close in age, both had young sons, both taught college. We commented on each other’s blogs because each of us tended to say things that resonated with the other. She even observed once that she, Rheumatoid Arthritis Guy, and I, who are all around the same age, seemed to experience flares around the same time. I related to her. I loved the spunky way she wrote about her illness. And the fact that she probably died of the same disease that I have is just too much for me to face right now. My heart is breaking for her husband and son. Her last post, back in April, broke my heart even then – it’s even harder to read now.

I will miss you, Superbitch. I don’t know what else to say.

Appreciation

Thursday, May 5th, 2011

I recently learned that my blog has been named as one of  “40 Excellent Blogs for Arthritis Support” by NursingDegree.net. This has really made me think. It’s also given me the kick in the pants I think I needed to start writing again.

The list is divided into blogs of two types. The first are called “Informational Resources.” Many of my favorites are included in this list, and I really value what these people do. Sometimes I feel guilty that my blog isn’t more like these – I feel that I should be doing more to help others with RA.

But then I look at the second part of the list, called “Living With Arthritis.” This is the category to which my blog belongs. And there, again, are so many blogs I love to read. And I remember how many times someone has written to me to tell me that my blog puts into words (or sometimes music) the very things they think and feel. Some have shown my blog to their partners, family, or friends, and said, “This is what I’ve been trying to say – this is what it’s like for me.” And that, I realize, is of value.

I have been hiding out because things have been hard lately, and I’ve been pretty depressed. I guess I haven’t wanted to put that out there; so many people in our community work hard to stay positive, and I admire them. I also tend to go silent when things are wrong, even with my real-life friends. (This is something that started with the RA – oddly, I used to share everything before.) But, unfortunately, sometimes depression is part of the deal with chronic illness, and if I want to be honest about my experiences, I have to include it. There are some things I still don’t want to write about because they are too personal, but there are plenty of other things I could share. Some are good, some are bad, but they are all part of the deal with RA.

So I will try to do better. I’m so grateful to those of you who continue to read my words and come back even when I’ve been silent for awhile. I’ve been silent across the board – not participating in RA bulletin boards, not commenting on other people’s blogs. I want you to know, too, that if you’re on the list of blogs on my homepage, I still read you whenever you post. I’ll try to be better about commenting – it’s nice to know that people are out there!

Privacy and Pain

Saturday, March 12th, 2011

privacy

 

In this article about Mark Zuckerberg, creator of Facebook, author Lev Grossman describes the early days of the internet as follows:

The presiding myth of the Internet through the 1980s and 1990s was that when you went online, you could shed your earthly baggage and be whoever you wanted. Your age, your gender, your race, your job, your marriage, where you lived, where you went to school – all that fell away.

By contrast, the viewpoint espoused by Zuckerberg, and the concept on which Facebook is built, is “the fact that people yearned not to be liberated from their daily lives but to be more deeply embedded in them.” Today, it’s all about connecting, networking, sharing everything with everybody. You don’t get to be different people in different places – you have one online persona that you present to everyone.

Well, fine, but I don’t really think life works that way. Not all of us want to share everything with everyone, but at the same time, it’s not fun to be left out. So we do a sort of delicate dance between the right to a private life and the desire to be connected to people. Since becoming sick, I have discovered in myself an intense need for privacy that I never realized I had.

This blog is anonymous – my real name is in no way connected to it. This has given me the freedom to talk about my disease and its details in a way that might be of help to others who are going through the same thing, and it’s given me an outlet. But over time, this privacy has eroded somewhat. There are one or two people in my “real life” who have also seen this blog, and I need to be conscious of them when I write. There’s also another problem – I have become “Facebook friends” with several of the people on one of the RA boards I frequent. I have not shared my health issues with any of the people in my professional life, and so I never mention them on my Facebook page. The people from the RA board know this, and so far they have been completely respectful of this boundary. But it does leave me feeling strangely vulnerable – people from my “sick life,” who I have never met, have access to my “real life.”

I’m finding myself at an awkward spot with this right now. I’ve been going through some incredibly painful things in my personal life right now, things that are not about my illness. I have not even shared them with most of the people in my “real life” – just a select few. This blog could be a place to talk about them, if not for those few readers who actually know who I am. The RA boards could also be a place to talk about them, but I’d be concerned that someone might make an accidental remark on Facebook.

I don’t know how to explain why I can talk openly on this blog about the details of my illness but them clam up when it comes to other aspects of my life. When I was first diagnosed with RA, I was completely silent about it for about a year, only telling my immediate family and a few close friends. Maybe I needed the time and privacy for processing. It’s possible that the same thing is happening here. I’ve been reading blogs from others in the chronic illness world who are sharing their struggles more openly than I am right now. Reading them helps me, and I am grateful for them - maybe they are braver than I am? But I’ve also read blog entries by others who are wrestling with the same privacy issues as myself.

Right now, I feel a strong need for an anonymous place to talk about everything, but I am struggling, always keeping in mind that I don’t necessarily have complete anonymity here. The result has been complete radio silence on this blog for a long time.

Darn you, Mark Zuckerberg.