Rheumatoid Arthritis Articles

If you have Rheumatoid Arthritis the chances are pretty good that you live with a certain amount of pain. My doctor is always asking what it is on a scale of 1 to 10 and I’m pretty content at a 1 or a 2. I’ve learned to live with it and enjoy my life. Maybe I’ll get into remission one day but it’s entirely possible that I won’t and my life will still be filled with mostly great days.

After the initial diagnosis I got immediate relief from various medicines. Some of them worked like miracles for me and others didn’t work so well. I take a few pills each day and most of the time I forget that I have RA. I have little aches and pains that acupuncture does a good job of lessening. Every 25 days I have to give myself an injection. Every 25 days I feel like a patient. Twice a year that injection isn’t covered by insurance (it’s only FDA approved for use every 30 days) so twice a year I beg every physician I’ve ever met for a sample since it’s a $2,500 injection. Twice a year I get really bitter.

In any event I’ve had a good year or so and I’d upped my tennis to about four days a week. I was playing well and loving it until my elbow started hurting a bit so I slowed down. When I slowed down to twice a week my elbow hurt less but it still hurt so I went ahead and booked the acupuncturist twice a week and added another tennis match to the schedule.

I suspect you’re seeing the problem here?

Well I went ahead and bought a tennis elbow strap. I’m always seeing people in them and my FSA covered it so I thought I’d give it a go. It worked miracles so I added another day a week.

Now I’m back to four days a week of tennis plus an elbow strap and two days a week of acupuncture. I’m uncomfortable, after a match my pain is at a 3 or a 4 but I have Celebrex so I can knock it down to a 2-3 and add a little ice. I enjoy tennis. I love to compete and I’m going to just ignore this elbow and live my life.

I had a terrible plan.

About a month ago I was playing a match and my racket fell out of my hand. My stomach dropped, that’s exactly what happened when I was first diagnosed with RA. I picked up my racket and finished the match. The next day I played again and every time I hit the ball it was like the ball was hitting my elbow and I was fighting back tears.

I finished the match. This is a sign of weakness not strength. I was too embarrassed to tell my opponent that I was in a lot of pain and needed to stop. I hate having part of my body not work and my refusal to acknowledge it makes everything worse.

I went home, iced my elbow, took my first Tramadol in nearly a year and called the doctor. An appointment confirmed it is, in fact, tennis elbow and it’s an injury that typically develops over the course of several years and may take up to a year to heal.

So then I left and got into my car and cried.

I’ve begun OT, I’m resting and icing and taking fists full of anti inflammatories but I’m upset with myself that I keep repeating the same pattern and seem to never learn. Three months ago this might have been a much smaller injury. I’ve just put a three month hold on my tennis club membership. I’m guessing I’ll need more months off than that.

The problem is that I listen to my body and then I basically talk back to it. The conversation sounds something like this:

Hey, I’m your elbow and this is hurting me you should probably ask the doctor why. 

Oh, I’d love to treat you well but right now I need some endorphines so can you shut up and play tennis please? 

Sure, but I’m going to hurt again all afternoon so be sure to listen to me then. Okay? 

Okay. I promise I will. 

And then, you know… I’ve lied to myself, ignored it all and I’m left with this mess.

I’m pacing myself and not over committing this year. I’m spending more time with my IRL community and less time online.

The crazy thing is that my online content isn’t suffering. Maybe with fewer twitter updates I’ll actually have something to blog about? I ended up getting a new car last night and it wasn’t the Lexus. I’m kind of bummed because I did love my Lexus but now I’m on to loving something else. I’m sort of trashy that way in my ability to love lots of cars.

We’re having uniform issues. Alexander has a jacket for school that is practically new but has paint on it so he refuses to wear it. Instead he’s been wearing his sister’s sweatshirts to school and leaving them there. It’s 40 degrees in the mornings and both of my kids are freezing while a perfectly good jacket with two little bits of paint sits in my son’s locker.

It’s bizarre and to me seems a bit unreasonable that he doesn’t want to wear a stained coat. He’s not being persnickety he’s genuinely uncomfortable with it and now I have to figure out a way to get paint off the jacket or just staple the damn thing to his shirt so he has to wear it. By the way, it’s house paint. If anyone knows how to get paint off of fabric without ruining said fabric I’d be grateful.

Since it’s been freezing cold (I understand for your northerners that’s a relative term), I haven’t played much tennis. I’ve turned into an exercise class lady. Which is weird. I remember going to Jane Fonda’s Workout with my Dad’s friends when I was 10, 11 and 12 and wondering why anyone would exercise in a room, in a row and without a score. But I’m come to enjoy one of the local cardio classes. I’m still mostly uncoordinated and zig while the others zag but I’m getting there and it’s something to do when it’s too cold to sensibly exercise outside.

I’m still trying to figure out how you exercise a body with RA. It’s mostly depressing because I need the second hour to feel good and these joints just don’t have a second hour in them anymore.

The Auto Show wore me out. I mostly forget that I have RA these days. I have this baseline amount of pain that’s really quite tolerable. It keeps me from doing stupid things like handstands but it’s not enough to remind me that holding this camera for six hours will hurt my wrists.

When I say “hurt” I don’t mean ache. I mean the kind of searing pain that makes you want to cry like a 3 year old. When I overuse my hands they go cold and then they go numb and the only sensation that pokes through the numbness is the burning pain that also serves to totally depress me.

When I was first diagnosed with RA that was the pain I was living with day and night. So even though it infuriates me that my body has betrayed me like this and the pain is back it also reminds me of how incredibly lucky I am to have a (mostly) well controlled disease. Yes, I’d like to be in a remission but the reality is that I may never get there. I’d like to arrest the disease and make sure it stays confined to my hands and feet.

In any event I’ve found that the most magnificent, albeit time consuming, way to control both the pain and inflammation is acupuncture. I don’t even believe in acupuncture. I’m pretty sure I show up for an hour, a crazy lady with perfect skin puts a couple dozen needles in me, I listen to Howard Stern (you know to get my qi flowing) and fall deeply asleep for an hour while the acupuncturist and her assistant sit around giggling about the stupid people with needles in their faces.

But even with that it helps. I’m typing today and I haven’t taken a narcotic in almost a year, since the time I discovered acupuncture for flares.

I’ve also started juicing.

If you smell a whiff of patchouli on me or hear me mention “recycled clothing” for the love of all things holy please do an intervention.

I was diagnosed with Rheumatoid Arthritis almost two years and 15 pounds ago. When I was diagnosed I had already gained a few pounds and I attribute that to the lethargy. Upon my diagnosis I started with steroids (prednisone) and then a whole host of other pills that have you gaining weight. The Prednisone was the worst as far as weight gain but the best as it offered relief quickly.

When I went off the prednisone I lost ten pounds pretty quickly but another ten sort of stuck with me. Also I love to eat. I wake up in the morning, lay in bed and plan my meals. I really LOVE to eat. When I went from being a long distance runner to a woman who couldn’t walk up the stairs in her own house almost overnight I didn’t stop eating the way I had in the past.

That caught up with me. I need to lose weight.

I don’t need to lose weight to look good in my clothes. I look fine and I know how to dress around my “flaws”. I don’t need to lose weight to look good in a bikini, I’ve found that everyone on the beach who is remotely close to my age is so worried about their own looks that they can’t be bothered with anyone else’s. I just enjoy myself.

I need to lose weight because every extra pound stresses my joints. My ankles and toes don’t do well in the mornings. If I can knock off a decent percentage of weight I should have that much less pain.

Also, I’m told that some foods are really reactive if you have inflammation issues. Someone told me to give up tomatoes… after I got done sobbing at the loss of a beloved fruit I gave them up and lost my chronic indigestion. My friend Carley told me she’d been wrongly diagnosed with RA and that after changing her diet all of her symptoms disappeared. Another friend Tracey told me of her 30 pound weight loss after giving up foods she was sensitive to. They both took a blood test to determine food sensitivities. Neither one of them feels like they are on a diet, they’re just eating healthfully.

I’m going to go ahead and schedule that test. I’m not looking to be cured of RA but I’d like to see if I could get just a little more comfortable.

It’s come to my attention that I’ve mentioned my training with Loren a few times, and I’ve even shared a video with you that will explain why I’m giving up on flip flops forever, but I haven’t really shared with you some of the wisdom that I’ve acquired over the last three weeks.

Exercising with arthritis is like fast forwarding your joints about 40 years. The elliptical that used to be your BFF for low impact days actually hurts your hips. HIPS, like the thing my grandmother broke.

Want to lift weights? Forget about it on a rainy day, my hands are simply not up to the task.

The first week that I worked out with Loren I was just trying to find my rhythm. I’ve become competent in a few basic exercises so that now we can get through a circuit. Although I clearly chose the trainer that’s best for me I noticed that all the trainers at 24 Hour Fitness are using circuit training to some degree. There’s one guy who is always there at the same time as me and his trainer is either trying to make him Mr. Universe or trying to kill him. They do just about everything I do except with massive amounts of weight and he’s got like no body fat.

Circuit training is when you go from one exercise to another and keep your heart rate up. It sort of kills two birds with one sweaty stone. It’s an aerobic workout and it builds strength.

If you have RA like me working with a trainer might be more necessity than luxury. It’s very important to build strength and to keep unnecessary weight off your frame. Our joints are wearing out faster than people without Rheumatoid Arthritis so we have to be proactive in protecting them.

There are two things Loren and I have been focusing on: core strength and balance. These are my two least favorite things because they are hard for me. I’m like everyone else, I like to do the stuff I’m good at and I love to avoid the stuff that challenges me.

One of the circuits that I do for core consists of the following three exercises: Russian Twist, plank and V-set. I do 40 of the Russian Twist, 40 seconds of plank and then 40 seconds of V-Sets. Then we repeat that two more times for a total of three runs through the circuit. I often do this first with Loren BUT I don’t meet with him until I’ve done 10 minutes of cardio, so it’s not from cold. This is a great circuit to do at home and I’ve included images of a modified plank. RA hands and wrists just aren’t up to the task of supporting my whole body weight.

I’m including two pictures and a video of me exercising that are extremely unflattering. I do everything for you people.

This is plank for RA.

My elbows are under my shoulders and my heels are at a 90 degree angle. I’m probably not doing this perfectly so I’ll ask Loren to make a quick video of the three exercises together. I’m supposed to be squeezing my tush but I’m not ready to guarantee that I was. Also, it’s really hard for me to do this without holding my breath. I need to work on that.

This is what a V-Set looks like

Basically you keep your feet up and your core engaged while pulsing your arms up and down. It is positively exhausting and my form falls apart quickly. It’s fantastic to have a trainer for this exercise.

Here’s a video of the Russian Twist. I want to add a disclaimer that says something to the effect of my belly is all scrunched up so it looks extra fat… but the reality is that my belly could go down a bit. So I’m going to suck it up and cry mean girl if anyone but me mentions it.

I’m not like exploding my clothes fat, and you might not even look at me and be like, “there goes a fat chick.” But I’m fat.

I’ve never been this big without having a baby in my belly and this is a problem that needs to be arrested before it can blossom into a bigger one.

I’ve had this slowdown of exercise in the past year or so but I haven’t slowed down my eating. It doesn’t take a rocket scientist to see the problem here. I’ve thought about dieting and I’m using the VEEP plan with some success but I wake up in the morning thinking Chicken and Waffles! I’m going to take the kids to Roscoe’s because Mr. G has his man-date tonight. I seldom get out of bed before I plan my lunch and dinner and trust me when I tell you that breakfast is also good.

I guess you could see where this might put a few pounds on the old girl.

In any event I need some help fixing things so I asked 24 Hour Fitness if they’d get me a trainer. I’ve been going to 24 Hour Fitness since Alexander was about a year old and I used to be a much more diligent gym member. Actually it was easy because Alexander so loved the daycare there that I’d end up trying to fill up two hours with work out stuff(it was $4 for two hours and he’d cry his eyes out when it was time to leave).

It took a few weeks (two months really) but they were able to find a trainer who really understands RA and has been a trainer for 25 years. Unfortunately he isn’t at my gym, he’s at a gym closer to the kids’ school. It actually replaced my favorite grocery store so walking into it felt like I was cheating on my favorite grocer, you know, the one who sharpens your knives for you while you shop even though it’s supposed to take 24 hours. That grocer.

Can I tell you that this gym is light and bright with new equipment and a locker room that is immaculate and dry. The manager is a new dad with 17 month old twins and we talked babies and poop and he bragged about his wife, and I got to thinking that I’d like to get back to a place where Mr. G could brag about me.

I spent an hour with the trainer today and he knows how much I weigh… which means I’m going to have to be nice to him. We’re going to start with sessions post Oprah so that we can get a good momentum. I know a lot of bloggers will share the numbers. I’m not sure I’m ready for that but I can tell you that there are 15 pounds that really need to go.

I think I’ll feel better when we just get to working out regularly because this planning and thinking about it just makes me hungry.

It was a long day with the doctor yesterday. Everything is okay, but it’s not good. Good being “remission”. My hands are swollen, my hips ache and I can’t walk well the first hour of the morning. Maybe that’s not actually okay?

I’m not a good patient. I am not good at taking pills… recreationally who isn’t but this whole thing of two pills on an empty stomach isn’t working very well. I never have an empty stomach and I don’t want to wait an hour for breakfast. But I try to wait that hour for breakfast because they tell me it will make me feel better. Then I have a pill that I take two of on even days and one on odds. I take that with food. The food part is easy. I am always eating. Of course there’s the monthly injection. Even though it doesn’t hurt much anymore it’s the most depressing part of it all. I hate that injection and I hate seeing the syringes in my refrigerator. I’ve considered buying a small refrigerator just so I don’t have to look at the medicine every time I eat (which as you might imagine is often).

My hands are still in bad shape. I’m going to see an acupuncturist tomorrow for some short term relief because I really need to avoid the prednisone and I’m tired of celebrex upsetting my stomach.

The doctor wants to add back methotrexate which I’ve taken before and not liked. With “not liked” being a massive understatement. Part of what worries me about methotrexate is the liver damage. I don’t want to live with RA but I can live with RA. You can’t live cirrhosis.

I’m not filling any prescriptions just yet. I’d really like to celebrate my birthday with a glass (bottle… jug???) of wine and travel without worrying about side effects.

Here’s hoping.

Running hurts too much. I’ve got this weird space in my life where I love to run and being in motion makes me feel centered and sane. Unfortunately running is doing permanent damage to my joints.

I feel great when I run. Who doesn’t? It’s an incredible feeling when both feet are off the ground. Unfortunately by the end of a run I feel throbbing in my feet and then an hour later in my hips. The next morning my toes feel like they’re on fire. This is the arthritis telling me to slow the fuck down.

This weekend I ran on the sand and I had no pain whatsoever the next day. I’m not sure that I’m willing to make a commitment to being on the beach four days a week just to get my exercise. This puts me back at the gym, stuck on the elliptical.

Since AT&T has begun throttling my “unlimited” data plan I’m having to download my podcasts on wifi rather than streaming Sirius. I do not have words for how entertaining it is to listen to Howard Stern while simultaneously watching actors preen for one another at the gym. With Sirius not an option I need something else to make the gym not suck. 

I need podcast recommendations. I’m totally depressed about giving up the running so make it something wonderful.

I have RA. That’s Rheumatoid Arthritis. Had I become symptomatic twenty years ago I’d be disabled by now and unable to type. Because of science and research (and insurance) I’m in really good shape. I take a handful of pills each day and an injection each month. Once in a while you’ll hear me moan about the medicine, but for the most part I love the medicine, hate the disease, love the medicine.

At my last visit with the rheumatologist we decided to add another pill to the mix. Like I said, I’m in a good shape but I’m only 41 and If I look at the other women in my family that means I’ve got another 55 or so years where I need these joints to function. Slowing the disease down is good, but we’re going aggressive, we’re looking to arrest the disease.

Here is the conversation we had.

MD: You’re still menstruating, correct?

ME: Yes.

MD: If we add this medicine I need to know that you’ve got birth control that is 100%. The birth defects would leave a baby incompatible with life.

ME: Oh I’m covered. I’ve got an IUD, this is a closed up shop [waving over my middle]

MD: And those are 100%? [he’s still writing notes in his pad and to be fair most of his patients stopped menstruating long ago] I’ll just need to contact your OB.

ME: You don’t need to contact him.

MD: [a little startled and looking at me quizzically] I just need to confirm…

ME: [interrupting] You really don’t need to confirm. I have an IUD the chances of me getting pregnant are miniscule and if I did get pregnant on that drug I’d have an abortion.

My doctor looked confused, like this wasn’t the discussion we were supposed to have but it was the discussion we needed to have. I’m 41, my “baby” is ten and I’m done having kids. If I wasn’t a pharmaceutical dumping grounds and I got pregnant I’m sure I’d be happy, or I’d find a way to be happy… maybe. But there’s a time in everyone’s life to have babies. I went on ad nauseum explaining to him why this wasn’t my time to have babies and I assured him that I wanted to be better. I want to be well and that no babies would be part of the equation. I have two great kids to raise, I wouldn’t stay pregnant just so they could watch a baby die.

I’m 41 and I didn’t want my Rheumatologist hopping on the phone with my Gynecologist to get a promise that I wouldn’t get pregnant. I’m a mother of two and a wife of one. I’m middle aged, middle income and I used to be politically moderate.

And then everyone wanted to get involved with my uterus.

I used to love running. Running has been my link to sanity in every difficult moment of my life. I ran as a child, as a teen and as an adult. I ran short and long distances and I’ve always loved running in the hills. I love running downhill and taking flight almost as much as I love running up hill and feeling fire in my lungs.

When I can’t shut my brain off I go for a run and it fixes everything. It’s been my meditation, my therapy and my joy.

With he onset of Rheumatoid Arthritis I went from running a few miles a day to not being able to walk upstairs in my house almost overnight. In addition to the toll it took on my body there was a huge price to pay emotionally. Without being able to move well I was antsy, grumpy and sad all at once. I’d watch people run past me and stare wistfully.

In the last few months a combination of medicines has allowed me to exercise again. I can take long walks and hikes and still feel okay and I can even run a few miles without aches.

I’ve worked up to a four mile run. Rheumatologists will tell RA patients that you should exercise only to the point where you don’t feel joint soreness an hour or a day afterward. What’s been difficult for me as a former athlete is that my old mindset was to exercise to the point of pain. Not extreme pain, but in order to grow muscle strength you need to push it and feel something, a strain, fatigue… light pain.

Exercising when you’re an RA patient means stopping before there is pain and it’s a wholly unsatisfying experience.

Today I did a flat four miles of interval training. I would run at a slow but steady pace for 3 minutes and then walk for one. My hips didn’t hurt, my ankles and toes felt fine an hour later and even this evening. I never lost my wind. I never felt a burning in my chest and I never lost track of time.

My new normal isn’t leaving me happy.

I’ve signed up to run a half marathon in April and it looks like I’ll need to readjust my goals. I won’t be running. I’ll be walking because it’s the only way that I’ll be able to make the distance without injuring my joints.

I should be incredibly grateful that I have the ability to do this long walk. I’m not there yet. Maybe this race (though I’ll hardly be competing with anyone) will be a milestone that can help the disappointment dissipate.

I wish I was running. I’m trying to not look at walking as a defeat.