Drunk octopus wants to give you fluids.
(Or: The art of having to go pee in the middle of a Remicade infusion.)
***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.
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.
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.
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!
Another one of my long radio silences. This one is harder for me to write about. Wren sometimes calls RA the rheuma-dragon, and I’ve been looking for a good name for the beast who’s been visiting me lately. I think I’m going to go with Depression Zombie.
Depression and RA seem to go together a lot of the time. Several other bloggers I admire have written about it, and I’ve appreciated every word. But when it comes time for me to write about it, I get stuck. For me, one of the symptoms of depression is deep shame about being depressed. When I’m not depressed, or when it’s happening to somebody else, I understand that it’s a medical condition like any other, and that you can’t just will yourself out of it. But when I’m in it, I can’t see this. Somehow it’s my fault, or means that I’m weak, or… well, the self-attacking thoughts go on and on.
While the Depression Zombie had its bony fingers in my brain, I happened to read this post by The Bloggess, and it is an exact description of what I was feeling. I love The Bloggess – she is awesome – and although she’s not really an RA blogger, she does have RA. And what she said about depression really resonated with me, especially this part:
When I’m in a depression I want to write about it, but I usually can’t. I’m too overwhelmed and paralyzed and exhausted. I end up writing 100 angsty drafts that never see daylight and I convince myself that no one cares.
Anyway, I hope Jenny (The Bloggess) won’t mind me borrowing her words. I just can’t seem to find them myself, and hers are pretty much a perfect description of what’s been keeping me away from my blog. Please read her whole post, especially if you are dealing with depression too.
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.
(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:
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.
Goodbye, 2012. I will not miss you.
It’s been a humdinger of a year. The last few months have been especially brutal. So much of what has happened has been outside my control; this is always a hard thing for me. Attitude is important, but the fact is, sometimes things are just bad. And sometimes it’s important to be able to say so. So I will: Many things this year have been bad, and I was unable to do anything about most of them.
I am ready for a new year. I will do my very best to fill it with good and wonderful things. I am counting blessings and concentrating on the things I can control.
I want to thank those of you who have stuck around and are still reading this blog! I will try to make it worth your while this year.
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.
A strange topic, I know.
I was doing very well for the past several months. It was starting to look very much like remission. I was able to go out and have fun with friends, to enjoy playing with my son, to go for long walks. I was even able to get back to Irish dancing, something I had to give up when I first got diagnosed. I experienced bursts of creativity the likes of which I haven’t had in years.
And you know what? It stressed me out.
For years, I’ve been telling myself, “If only I didn’t have RA, I would do this and this and this and this…” So eager was I to get back to “my life” that when I finally hit a point where it looked like I could, I was overwhelmed. So many possibilities! So many choices! So much pressure to seize the day, to make every beautiful pain-free moment count.
I danced, I sang, I played the piano, I fiddled around with my guitar, I jammed with a friend, I contacted old friends, I hosted a game night, I took long walks, I got errands done… And every night I lay awake, unable to relax, riddled with anxiety.
When you have RA, you know that there isn’t a cure. You know that the good times may not last. Sure, some people have remission that lasts for years. Still, even these people can wake up one morning, suddenly unable to move. I know one woman who had a 25-year remission, and the beast still came back. I’ve also seen this theme showing up on a lot of the blogs I read lately – people whose periods of remission, or something like it, have come to an abrupt end.
Anyway, it may be coming to an end now. I’ve been in something strongly resembling a flare for the past two days – low-grade fever, extreme fatigue, trouble walking, a big ganglion cyst on my left wrist. My interstitial cystitis, too, has been miserable after a very long period of quiet. I had to miss dance class tonight, to my heartbreak. I am hoping that this is just a bump in the road, that it will pass and I will get back to the state I’ve been (sort of) enjoying for the past few months. Stress or not, it has been so wonderful just to feel good.
Hard to say if it’s a flare, because there are other things going on – for example, recent lab tests showed that my adrenal insufficiency has returned with a vengeance, and I know that this can sometimes cause symptoms very similar to those of RA. (More on all of that in another post.) Either way, I’m no longer well. Maybe, oddly, this will relieve some of the stress?
Nah, maybe not.
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.