“Progress in understanding the cellular and molecular mechanisms of rheumatoid arthritis (RA), together with the availability of new therapies, has changed the way we think about RA. The paradigm shift in RA therapy has been from controlling symptoms to controlling the disease process with the abrogation of inflammation. Challenges that are still unresolved include the issues in disease prevention, treatment specificity to restore tolerance, approaches to facilitate tissue repair, and treatment optimization to fit the individual patient’s disease phenotype and comorbidity context. This review summarizes the pathogenesis-related rationales for the current therapeutic strategies in RA and for emerging therapies and potential approaches to restoring immune tolerance in RA.”
What advice would you give to someone who has just been diagnosed with RA?
Get your support system together as soon as possible. Get a list of questions together to ask your Doctor and don’t feel pushed out of their office. To many times early in my visits I would feel rushed then as soon as I would get to my car I remembered a question that wasn’t answered.
Do you use any mobility aids?
How has living with RA helped to improve your life?
Wow what a question, well I always get a great parking spot with my handicap Plaque. Seriously I guess I can say to slow down, I love to build projects in my garage. With my hands hurting I have to split my projects into smaller more achievable goals.
Do you have any visible signs of RA?
My fingers point in a couple different directions and swollen hands.
Can you please describe some of your favorite coping strategies for living with RA?
Laughter, Love and support of my family. And understanding that I define myself I will not let RA define me.
Can you please describe your current medical (traditional and alternative) treatments?
Plaqnil, Enbrel and I started a supplement routine in August with good results.
Is there anything else about yourself that you would like to share?
I work full time in the construction industry as a sales/tech rep. I have good and bad days but thanks to my two kids and my amazing bride of 20 years I’m a survivor. Together with knowledge and support you can get through it.
I had big plans for this morning. First, I was supposed to wake up early to take my dog Alva to the vet, so that we could check her blood sugar levels. Then, later in the morning we were going to do some shopping, followed by lunch at whatever restaurant happened to be in the vicinity of wherever we found ourselves at noon.
[For someone who used to cross the world with specific restaurants in mind, and who once ate black moss in China (it was actually quite good), I now find myself being more and more satisfied with whatever eating spot happens to be across the street!]
As soon as I was supposed to wake up, however, I knew that something was wrong. The first thing I did was mentally reschedule the visit to the vet; we could just as easily go on Monday as we could go today. I was unwilling to cancel my late-morning and lunch plans, though. My partner immediately suggested that we go ahead and reschedule these plans as well, but I preferred to “wait and see how I felt.”
And these were the last words I spoke, until I finally woke up many hours later, at 12 noon.
During those intervening hours, I experienced one of the worst flares that I’ve experienced in a long time. No matter how bad things might get, I’m rarely willing to think of my rheumatoid arthritis as being in charge. (I can’t control a lot of things, but I can always control how I react to what might be going on.) This morning it wasn’t even a contest, though…and apparently my calls of forfeiture went completely unheeded, as I got absolutely walloped for the next few hours.
A couple of aspects of my reaction to what was happening stand out.
First, while I was in the worst of my flare, even though I was asleep, I was still quite aware of what was going on. I could do very little; even turning around in bed seemed next to impossible. While all of this was going on, I was somehow able to put my mind and my thoughts in a good place, so much so that I started dreaming that it was move-in day at the college dorms. (No matter how old I was, during the night before starting another year of studies, I always used to feel like a little kid on Christmas eve!)
Second, as soon as I woke up, I found myself starting and moving on with my day as best I could. Yes, I have to cancel my first afternoon session of tutoring, but I did follow through with my second session later in the day. It used to be that flares such as this one, and losing my entire morning, used to put me in such a foul mood that I would not only snap at everyone around me, but that I would also feel depressed if not for days, then for weeks.
Today, I didn’t feel such a thing. Even as I experienced the wide-eyed amazement that naturally arises from knowing that I once again went through *that* much pain, I felt okay. Part of my was proud, when I realized how well I had gotten through this latest episode. Another part of me was humble, when I realized exactly what I had just, once again, gone through.
I continue to learn one of the most important lessons of living with this crippling disease:
Even when I have no control over my body, I have absolute control over my mind.
And as long as I continue to know this thought, believe this thought, and practice this thought, I know I’m going to be okay. It’s become, in a way, my own personal serenity prayer.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
Today feels like one of those “pivotal” days, probably because–as I will explain in a while–this day is inextricably linked with some of the days that followed my diagnosis of rheumatoid arthritis, many years ago.
As I started my day by going to the lab to get blood drawn so that my rheumatologist could establish my new baselines, and as I finished my afternoon with another session of physical therapy, I couldn’t help but feel how “normal” all of this has become. It used to be that all of my medical appointments and all of my rest breaks would get squeezed in between all of this other things I had to do. Now I know that there are many other things that I’m still able to do, especially when I’m having a “good” day, but by and large taking care of my body and taking care of my (physical and emotional) health has definitely become something which I now perform on a full-time basis. It has, in way, become my job.
I am a year and a month away from turning 40. As I look around to many of my classmates who I graduated with from Columbia and Harvard, I see a lot of executive titles, industry leaders, and high-paying jobs. It used to be that I hated having to spend so much time on my health care, and I hated that over the past decade my career continually had to play second fiddle to my health. (I recently saw someone write something along the lines of “you know you have RA when you too sick to even telecommute!”)
Now, however, I’m on the opposite end of the spectrum: I’m grateful that recent lifestyle and work changes have allowed me to prioritize taking care of myself, above everything else. Yes, my career has suffered, as has my money-making potential. But in the end, I’ve achieved something which has no price: I’ve somewhat successfully figured out (even though there continue to be many speed bumps along the way) how to live with this painful and debilitating disease.
Years ago, soon after being diagnosed with rheumatoid arthritis, I was prescribed methotrexate. At the time, I certainly wasn’t ready to accept the fact that this illness with which I live was chronic. Looking back, I also don’t think I was prepared to take such a powerful drug. I wasn’t even aware of the fact that I should take omeprazole an hour before taking my stronger medications; something which is now a given, but back then I was a complete newbie. (While Superman gets abs of steel, I’m left with a stomach that seems to be made of tissue paper.)
Later this evening, I will once again start taking methotrexate. I think this is why I’m in such a pensive mood at the moment…because while the act (taking a few MTX pills) is the exact same thing that I did at the start of my RA “career,” everything else about my situation is completely different…and being able to make some of these connections between the past and the present allows me to see exactly how far I’ve come over the past years.
I’ve accepted what I have. I’ve accepted what this means. I’ve accepted this will never go away. Such simple words, words which will never be able to accurately communicate just how hard it is to reach some of these levels of acceptance.
I’ve also accepted, though, that the most important thing for me to do is to continue to take care of myself, above everything else. And as I return to taking methotrexate later today, this is exactly what I’m going to be doing.
I’m going to be taking care of myself, as best I can.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
Last night, I dreamt that I was having dinner at someone’s house. I remember, in my dream, looking at my hands, and crying because I was in so much pain. Before I knew it, (in the real world) I was being shaken awake. I was in fact crying, and my hands were indeed experiencing intense pain. The routine nature of this episode is what strikes me the most: no bedside lamps were turned on, and very few words were exchanged. I just rolled over, and went back to sleep.
When I woke up, I was actually feeling pretty good. I went through most of the morning and afternoon without any major issues. I had a gut feeling that my episode during the night might be a sign of worse things to come…but with each hour that passed my nervousness started to subside, and my confidence continued to grow. When I jumped in a taxi at 3:30pm, I even started to think that I had made it through yet another day without any major flares.
Of course, we all know what happened next.
I had a major flare that was so strong and that came on so quickly, that I was barely able to walk when I stepped out of the taxi less than 10 minutes later. Now my left knee has always been the most affected joint in my body, so much so that during my visit with my rheumatologist last week he recommended that I start looking into the possibility of getting an arthroscopic cleaning. As such, my right knee has always come to the rescue, and has always (grudgingly) accepted the extra pounds whenever I have to distribute weight off my weak knee.
My right knee let me know today, though, that it’s not too happy with this situation. (Come to think of it, I can’t really blame my right knee for reacting in such a way.) Just a few steps away from my physical therapist’s office, it stopped responding to my mental commands to move.
As I walked into the door, I told myself that I was not going to cry. (I can’t even count all of the occasions when I have shown up with tears rolling down my cheeks.) Today was going to be different, I told myself. Even though I was obviously in pain, I would force a smile. I would do anything, but I wasn’t going to cry.
But the more I told myself not to cry, the more I needed to cry. And once again, as my tears flowed and as I silently sobbed, I was welcomed with gentle words and soft caresses. As I was eventually helped up onto the bed, I couldn’t help but feeling some sense of panic over the loss of use of my legs. (By this point, my left leg had joined in on the party as well. Even after laying down, I wasn’t able to move either. Electrical currents were eventually applied, but the muscles still would not respond. My legs were, in fact, *completely* down down for count.)
And right at that moment, as much as I’ve tried to not think such a thought for the past few years, I felt like a loser. And then I felt angry with myself for thinking such a thing. And then I decided that such thinking wasn’t helping any…so I just tried to stop thinking completely. But as I watched my physical therapist move my legs, and realized that were it not for my sense of vision I would have no idea they were even being moved…well, everything just seemed all too confusing, and I really didn’t know what to do.
I did know that panicking wasn’t going to help any. So I closed my eyes, and started taking deep breaths…within a few seconds I was so relaxed, that I actually dozed off.
I was woken up, exactly how long later I don’t know, by my partner walking into my PT room. At first I couldn’t figure out what he was doing there, but then I remembered calling him, in the few minutes after arriving at my physical therapist’s office. (I’m not even sure what I said when I called him, I just remember having an overwhelming need to let him know that I had safely made it into the office.)
I’m feeling better now, and I’m back in the comfort of my own bed. I’ve written previously about just how quickly these episodes can appear (a month or so ago, it happened when I was at the grocery store); today’s episode only emphasizes this reality. When I left my house, I was doing so well that I actually thought I’d be okay with just with my cane. I told myself, however, that I had better be safe, and ended up taking my crutches. And in the span of taxi ride during which I am barely able to listen to two or three songs on my iPod, I went from being able to walk with no problems, to barely being able to walk, to a few minutes later not being able to move my legs.
I don’t know how to close this post. I don’t have a good statement about another lesson learned. I just needed to get these words down, I think, to remind myself in the future that this episode actually took place. It may sometimes feel like a dream, like the one I had during the middle of the night…but just as I saw last night, even when it feels like I might be dreaming, what is happening to my body is all too real.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!