Posts Tagged ‘Pain’

The Juggling Act: When Diseases Collide

Sunday, November 2nd, 2014

http://www.dreamstime.com/-image394379

***Some parts of this post may be TMI.

I don’t know why the guy in the above picture is smiling. I really don’t.

RA is a very sociable disease. It likes to invite lots of friends along. As RA patients collect new diseases and complications throughout the years, it means new medications, new treatment plans, new diet or exercise changes, etc. etc. etc.

Fine – but what happens when the treatments are incompatible?

I’ve been having some issues with my heart for awhile. My blood pressure has always run on the low side, but I started getting episodes when it would be REALLY low – for example, 80/50. After one of my Remicade infusions, I tried to stand up and had a weird sensation of my heart going BUMP, followed by a feeling of intense dizziness that made me sit down. The doctor called it a vasovagal episode and recommended increasing my infusion time to three hours, which has helped a little. At another, more recent infusion, my blood pressure was so low when I first came in that the nurse insisted on pumping me full of saline before she would even start the medication. (It worked.) I also had a lot of episodes of standing up and blacking out, racing heartbeat keeping me awake at night, etc.

After two abnormal EKGs and one (thankfully) normal echocardiogram, a cardiologist diagnosed me with Postural Tachycardia Syndome, or POTS. This is actually very good news, since it means that nothing is wrong with my heart – just my stupid autonomic nervous system. Not shockingly, it is often associated with autoimmune diseases, including Sjögren’s Syndrome, another fun friend that my RA decided to invite along.

There are medications for POTS (beta blockers are popular), but most cases are manageable with lifestyle changes, and that’s the route I wanted to go. So I started implementing the changes my doctor suggested – increased salt and water, increased cardio, etc.

And that’s when the juggling got fun.

I started drinking two big bottles of SmartWater a day. SmartWater has electrolytes and was recommended by other people with POTS. I took the suggestion of one of these people and started chugging one bottle before I even got out of bed in the morning. It worked. I felt great.

Except…

The added minerals in the SmartWater drove my interstitial cystitis (IC) absolutely crazy. My bladder went berserk, and I could no longer sleep at night because of the urinary urgency and pain. Before this, my IC had been quiet for almost a year – I had actually started to think I didn’t have it anymore, because the treatments were working so well. I couldn’t stand it.

Out with the SmartWater.

So I concentrated on the exercise part, and started a pretty intense cardio regimen. My joints were behaving beautifully, I wasn’t injuring myself, and I felt better and more energetic than I had in years. It worked. I felt great.

Except…

The intense exercise regimen drove my pelvic floor dysfunction (PFD) absolutely crazy. (Pelvic floor dysfunction is good buddies with interstitial cystitis – boy, these diseases do love their friends!) Again, up all night with pain, urinary urgency, etc. I saw the urologist who treats my IC and she confirmed that my bladder was fine – it was definitely the pelvic floor muscles, which were in major spasm. She didn’t have a great solution for the exercise problem, except to say that I should probably knock it off until the muscles relax. She prescribed a nightly low dose of Valium, which is apparently a common treatment for muscle issues like this. I wasn’t happy to add another drug. I also started spending a lot of quality time with my heating pad. (See what I mean about the TMI warning?)

Out with the intense cardio regimen.

That one really stung, because I was worried that the RA would be the obstacle, and instead my joints were perfectly happy. It was working. I felt great. I felt strong and powerful and able to do anything. I loved it, to my surprise. I really did.

Obviously I can still exercise, and will, but it has to be a lot more gentle, which probably won’t help the POTS nearly as much. I can still increase my salt and water, but the SmartWater was so easy, so convenient, and worked so quickly and well. It’s just frustrating.

I really, really, REALLY don’t want to take medication for the POTS. I was not at all happy to have medication added for the PFD. And my RA is actually in drug-induced remission. I want to enjoy this. It has made me so happy.

RA, I think it’s time for you to consider a more introverted lifestyle. These buddies of yours have got to go.

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!

HALT

Saturday, March 16th, 2013

Halt

There’s an acronym used in self-help and recovery circles – I think it originated with Alcoholics Anonymous. When you find yourself feeling low, you’re supposed to assess yourself to see if you are feeling Hungry, Angry, Lonely, or Tired – H.A.L.T. Any one of this four states can weaken resistance and put people in a vulnerable position.

I’m lucky enough not to have issues with addiction, but I think H.A.L.T. is a useful tool for pretty much anyone. I know that when I let any of those states get too far, and especially if I’m experiencing all four at once (which has been happening a lot lately), I sometimes make decisions that are counterproductive, even self-destructive. I deal with Hungry by grabbing huge handfuls of M&Ms. I turn being Angry inward and end up with migraines. When I’m feeling really Lonely, I isolate myself. And, of course, when I am Tired is when I most resist going to bed on time, much like a toddler. The relationship isn’t always linear, either – being Lonely or Tired can also get me reaching for the M&Ms. When I am feeling all four, I generally make poor self-care decisions – I don’t eat, sleep, or play well, and my mood gets pretty bleak.

I feel the need to add one important variable to this list: Sick. (Also In Pain, but “HALTS” sounds better than “HALTIP”!) When I am sick or in pain, good decisions become really hard for me. My plans and goals fly out the window. I feel helpless and out-of-control. Also, I develop a strange blind spot – I don’t realize at all that being sick or in pain is the reason for my emotional state. I came face-to-face with this yesterday – it was the day after my Remicade infusion, and I woke up feeling amazing. (This doesn’t always happen.) Birds were singing. Colors were brighter. It was like this.

I used to have all kinds of systems in place for times when I wasn’t doing well. I used to take methotrexate once a week, and because I knew in advance that I would be feeling terrible that day, I had a whole routine set to go. But my RA has actually been doing pretty well for awhile now, and even though this is a great thing, it means I get thrown for a loop more easily when things aren’t good.

It’s not just my own Sick that gets me down. I have a five-year-old son, and he’s been bringing all kinds of germs home from preschool. It seems like one or the other of us has been constantly sick for months. We just seem to pass the bugs back and forth, even though I know that’s not how it works. And when my son is sick, I end up home alone with him, day after day, getting run-down and exhausted. Not to mention that thanks to Remicade and the immunosuppression, and his normal five-year-old tendency to need lots of cuddles when he’s not feeling well, I almost always end up sick too. (That’s a topic for a whole other post – probably my next one.)

I’m struggling with how to make H.A.L.T. work under these circumstances. The idea is that you recognize how you’re feeling and take action to meet the need. It’s clear (although not always easy to do) that you need to eat if you’re hungry, sleep if you’re tired, etc. Anger and loneliness are a little bit trickier, but there are still proactive things you can do to address them.

So what do you do when you’re sick, or your kid is sick, and it’s relentless and constant and it’s depleting you in all of the other four areas too? What do you do when the pain isn’t responding to meds? How do you take care of yourself and protect yourself from coping mechanisms that aren’t helpful in the long run?

This question isn’t philosophical – I know people will want to respond by talking about faith or religion or positive thinking. I’m not discounting those things – it’s just not what I’m asking. I mean, what are some practical things I can actually DO in these situations? What are some things I can do other than reaching for the M&Ms or withdrawing into myself? How do you make yourself do the things that you know are healthy?

I really want to know. It’s clear that I need some new tools.

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.

Musical Interlude

Sunday, May 16th, 2010

CB0629294

It’s been awhile since I wrote a new song.  The last few months have been especially rough - flares, low energy from the adrenal problems I’ve been having, exhaustion and discouragement and malaise.  So I figure, why not make something creative out of it? 

I had some trouble coming up with a title for this one.  It was originally called “Flare Song,” because that’s what it’s about.  Right now the working title is “Hit The Ground,” but I’m not sure about this one either.  Suggestions? 

***Update – I have changed the name to “Easy.”  Thanks, Lene!  This was one of the titles tossing around in my head, but when someone else said it, it just clicked in.

This also marks the debut of Little Martin!

Get the Flash Player to see the wordTube Media Player.

Her Diamonds

Friday, April 2nd, 2010

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

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

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

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

Her Diamonds

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.

Wagon Train Part 2: Let’s Get Physical

Tuesday, December 15th, 2009

In an ironic twist, I have fallen off the wagon-circling wagon.  There are reasons for this, which I may get into in another post.  But for now, I’d like to jump back on and talk a little about my next set of wagons – physical activity.

Exercise is a seriously tricky proposition for a lot of people with RA.  On the one hand, we know that it’s a really important part of maintaining joint health – sometimes it very literally is “move it or lose it.”  On the other hand, when the joints are in flare or already damaged, things can get dangerous.  Another annoying thing about RA is its changeability – the line between just enough activity and too much is razor-thin and seems to move around all the time,  making it hard to stay consistent.  At least it sure works that way for me, and for a lot of other RA folks I know.  So I have to admit that after going SPLAT a few too many times from overdoing, I have erred on the side of doing… well, nothing. 

(Sheepish grin)

I was going to write a somewhat lengthy post that covered all of these different thoughts I’ve had about exercise over the years, but I’m really tired today and so I will get right to the point, which is my plan to change this.  I’m realizing that as time goes by, I’m getting weaker and have less and less energy, and that I’m beginning to have new muscle problems in addition to my usual joint problems.  While I do realize that my illness has a lot to do with this, I want to be proactive about the parts I might be able to influence.  I also want to model something better for my boy than a sedentary lifestyle.  So here are the wagons I plan to start circling:

Wagon #1: Water exercise

Esther WIlliams

(Okay, so I may never be Esther Williams, but I think the picture is cute!)

A long time ago, my rheumatologist said that swimming would be good for my joints.  Problem – my “swimming” is really more like “trying-not-to-drown.”  So then he suggested low-impact water exercise – for example, the Arthritis Foundation Aquatics Program (AFAP), which offers gentle range-of-motion exercises for people with all different forms of arthritis.  I learned that it was offered at several different local YMCA’s, as well as a few other places.  Around the same time, my husband and I thought that it would be a good idea for our son to take baby swimming lessons.  One of our friends had taken her son to the Y, so we checked it out.  And then, in one of those beautiful events of synchronicity that makes you think things are meant to be, we saw it:

AFAP class and Infant Swim, Saturday mornings, same time, same pool.

So off we went on Saturday mornings for a little family exercise.  At first I felt a bit ridiculous, since I was by far the youngest person in my AFAP class.  It was a little awkward explaining to people why I was there, since most of them were osteoarthritis patients.  But it didn’t take long to get comfortable, and I really enjoyed the sensation of being in the water, which is kept at a soothing 90 degrees.  And it was so sweet to look across the pool and see my baby splashing away in my husband’s arms, loving his swimming class.  He was a natural water baby right from the start.  Sometimes he would catch sight of me, and I could see him laughing and saying, “Mama!”  The little old ladies in the class loved seeing him, too.  And I liked knowing that his father and I were being good models for him.

Unfortunately, I had to stop going to class for a loooooooooooooong time because of problems with non-healing wounds and repeated infections – a really unpleasant story I won’t share here right now.  (Fun times, let me tell you - aren’t immunosuppressant meds great?)  Then we just got busy and involved with other things.  But two weeks ago, we decided to start going back.  This time we joined the Y as a family (we were guests before) as part of a bigger commitment to exercise.  The AFAP classes are free to Y members, and the Y also offers free childcare to members while they are working out, so I would like to start going more than once a week.  (That’s if my son, now a toddler, will cooperate with the childcare thing – something we are working on.)  I’m also encouraging my husband to start swimming during the week - he likes it and hasn’t done it in years.  And we’ll keep up our family Saturdays, which are good for all of us. 

Well, I was going to write more – there are at least three more wagons in this particular part of the circle – but to tell the truth, I’m in a lot of pain today, and I’d still like to get something posted.  So I’ll sign off here, and tell you about the others when I’m able.