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!
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.
I have been waiting and waiting and waiting to post because I felt as if I needed to have something meaningful to say. Well, I don’t. So I guess I’ll just do a brief catching-up-type post and then hope that inspiration strikes at some point!
My dissertation defense was a success, so you can now call me Doc! It still feels really strange to be done after all that work and time. I’m a bit at loose ends, trying to figure out what to do next. I’ve had a long period of rest – more than a month – and am starting to feel as if I’d like another project.
As for the RA, things have actually been pretty good. My doctor did raise my Remicade to 8 vials, and it really seems to have helped. On the whole, I’m doing very well. I also got off prednisone completely, which was a bumpy experience, and I hope I can stay off it for awhile.
Not much else to add. I’ll try to write something more profound next time!
Just wanted to let you all know that I’m still here! I’m getting ready to defend my doctoral dissertation, so I haven’t had much time for anything else lately. As for the RA, things are still not too great, but I’m not in the major flare anymore. I’m having another Remicade infusion on Thursday – we are increasing my dose to 8 (!) vials. If this doesn’t do the trick, it’s going to be time to change medications. More about that when I have time!
In other news, my server is going to be migrating soon, so this blog will be offline for a short time. But it will be back, so don’t go away!
Some of you have expressed concern about my long silence – thank you for that. I know that I worry too when my favorite blogs are quiet for too long. Wish I could tell you it’s because I’m out running and jumping and playing… oh well! But things aren’t so bad, either.
I’ll write more soon, I hope!
I’m sorry it’s been more than a month since I wrote. It’s been a tough time and I’ve been very sad.
For those of you who were left hanging by my last post, the doctor declared it not remission, but a “near-remission experience.” My bloodwork did look great, and my symptoms were on the whole SO much better, but joint examination showed that there were still just a few joints that were in a state of active inflammation. That’s still great, amazing progress for me, and we were both in a very hopeful place.
Then the flare hit. It began with an IC (interstitial cystitis) flare that wouldn’t get under control and soon triggered a full-on RA flare. Fevers every afternoon, swollen fingers and knees, brain fog, exhaustion, the whole nine yards. It’s far from being the worst flare I’ve ever had – the IC was actually much more difficult and painful to deal with this time around than the RA – but it’s not a good development. Whether I got rundown from the IC or from stress (there’s been a lot of it lately, which I won’t go into) isn’t clear, and maybe isn’t even important. The point is that I’m back in a bad place now. I’m also back on prednisone, which I worked so hard to eliminate. This really broke my heart, especially since it’s not a good step in the battle against adrenal insufficiency, which I was winning beautifully. On the bright side, the adrenal problem was really caused by long-term daily pred usage. Since this is intended to be a short-term pred taper, and since my adrenals have recovered almost completely, it’s not likely that it will trigger the same problem again so quickly.
My Remicade infusion is on Thursday, and I hope it will quiet this down. I also had labwork done on Friday, so we’ll see if it shows anything new, and talk about medication changes if it does. In the meantime, I guess all I can really do is hang on. I’ve been here before, and I can do it. I’m just disappointed.
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?
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…
Where would you rather sit if you were having a Remicade infusion? Here:
Yeah, me too.
I belong to a couple of online RA discussion boards. Every once in awhile, a frightened Remicade newbie will post a question about the infusion process. The community generally jumps in with reassuring responses and descriptions of how the whole thing works, describing friendly infusion nurses, recliners, TVs, even snacks. And I sit there reading them, thinking, “Really? It doesn’t go that way for me…”
Yesterday, I got to find out how the other half lives. See, my infusions are normally done in my rheumatologist’s office – a nurse comes in on Thursdays to do them. But about two weeks ago, I got a call saying that the nurse wouldn’t be available on my scheduled week, and could I move it a week earlier or later? The other dates, unfortunately, didn’t work for me. I’ve also been pretty unhappy with my infusion experiences, and have been curious about how other people do it. So I asked if there was someplace else I could go, and the medical assistant reluctantly said that I could have it done at the hospital. She did warn me that it would be more expensive, but I thought it would be worthwhile just to see what it was like.
And boy, was it different.
When I get Remicade at my doctor’s office, this is the drill:
I am shown to one of the regular examining rooms, which are really tiny, and I sit in a wooden chair very much like the one in the first picture except older and shabbier. Recently, someone moved the furniture around in the examining rooms, so the chair now sits awkwardly behind the open door, where the door bumps my chair if anyone tries to open it wider. The nurse comes in and starts my IV. Most of the time, he doesn’t take my vitals, and he never asks me any questions. Then he hooks up the Remicade bag and leaves. I generally don’t see him or anyone else again. I sit and read a book or listen to music on my iPod. At a certain point, I feel pain in my arm and look up to see that the IV has run completely dry. So I get up, drag my pole out into the hall, and flag someone down to try to find the nurse. If he’s not in the middle of something (which he usually is), he comes in, flushes the line with saline, and bandages me up. Otherwise I wait awhile, then go back into the hall to repeat my request.
Since he has so many infusion patients in one day and also has another job to get to after he’s done, the infusions have been getting faster and faster – they now take less than an hour and a half. I’ve told him before that fast infusions make me feel awful, but he claims that the Remicade drug rep told him that speed isn’t an issue, and that some people just react that way to the drug. (Funny, since I only started reacting badly when he started speeding up – also funny, since other people on the boards say they have the same problem.) After my infusion, I go down to the car where my husband is waiting. I am always depressed and shivering and my hands are icy; my husband has to turn the heat on in the car, even if it’s hot out. I feel like I’ve been hit by a truck. We go home, where I collapse and sleep for hours. Sometimes I wake up the next day still feeling awful.
Now, here’s how yesterday went:
I got to the hospital and went up to the infusion room, which turned out to be on the oncology floor. (I do have to admit that seeing “CANCER CENTER” on the wall when I got out of the elevator did bum me out a bit… the one negative in all of this.) I walked into the room and saw about four or five blue recliners and two other patients, who were there for chemo. The nurse, who was incredibly friendly, weighed me and took my blood pressure and temperature. Then she asked me a whole bunch of questions about how I was feeling and went over my chart. She had a list of my medications which my rheumatologist’s office had faxed over; about half of them were wrong, and she made the appropriate corrections. (Okay, this worries me – time to have a talk with them.) I found an empty recliner, which had a pillow waiting for me and a big table next to it for my things. I told her that my infusions usually take about an hour and a half but that I don’t do well at that speed. She reacted with horror and said that the Remicade guidelines are pretty clear on the importance of going slowly to minimize the chance of infusion reactions – she usually takes about three hours. She started my IV and let me get good and hydrated before hooking up the Remicade bag.
At all times, there was at least one nurse in the room, and all of the nurses I saw were friendly and kind. They came right over to each of us several times to ask how we were feeling. They ordered lunch for us from the hospital cafeteria. Several times, they passed out chocolate, and also offered to go get sodas if we wanted them. The recliner was really comfortable. There was a TV, but I didn’t watch it. Instead, I had a great conversation with the 87-year-old cancer patient in the recliner next to mine – we turned out to share a common interest in opera. My IV didn’t run dry – the nurse came over before the Remicade bag was completely empty and flushed the line. I never had to go looking for anyone.
When I came downstairs and got in the car, my husband remarked on how different I looked. I was warm and happy and felt cared for. (The chocolate zinging through my system didn’t hurt either!) My hands weren’t icy. I went home and felt mildly tired, not exhausted. I didn’t need to nap.
Now I don’t know what to do. I love my rheumatologist; he is smart, kind, spends lots of time with me, takes a team approach to my care instead of dictating to me. He seems to know everything – I will come to him with what seems like a vague symptom, and he knows immediately which tests to order. He has come up with some things that seem like they’re completely out of left field, and always turns out to be right. He is, quite simply, the best doctor I’ve ever had.
But there are problems with his office, more than just my issues with the infusion process. Twice now, I’ve gone to my infusions expecting my dosage to be raised, and learned that someone forgot to call the insurance to authorize the increase – so I had to stay at the lower dose. The medications listed on my chart are usually wrong – I’ve called to have a prescription filled and found that someone forgot to note my new medication in my chart, resulting in a delay. Medications have also been called in at wrong doses or in wrong amounts. The billing office is more than six months behind – a big problem, since my FSA has deadlines.
I was pathetically grateful for the way I was treated at my infusion yesterday – I was ready to get down and kiss the nurses’ feet. I almost felt guilty for getting such good care, as if I somehow don’t deserve it because I am not a cancer patient. I question whether it was worth it, given the difference in cost - am I just being won over by chocolate and kindness? (I don’t know exactly what the cost difference will be – I’ll know when I get the EOB – but our PPO only pays 90% of costs, so it’s bound to be expensive.) My husband points out that we always meet the out-of-pocket max on our insurance anyway, and what does it matter if we meet it a little sooner? My mom points out that infusions are, when you really think about it, a pretty terrible thing to have to go through, and that the least they can do is make the experience as comfortable and pleasant for me as possible. And what’s wrong with a little chocolate?
I have much to think about.