Rheumatoid Arthritis Articles

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’ve hardly blogged because this week has been a whirlwind of activity. The folks at GoPro brought a few bloggers and invited MSM to join them on an expedition with some rocket scientists while we launched weather balloons into the night sky.

Here’s how it unfolded.

Monday:

Bring the kids to school. Go home and pack everything I own plus some of my friend Alison’s stuff into a bag. My tennis partner has offered to drive me to the airport. This, I think is awesome, later I will remember why this is not awesome.

At 3pm I leave Los Angeles for Seattle. Bulkhead seat and a non chatty seat mate. Huzzah!

I spend the dinner hour in Seattle eating something and wishing I was there already.

Score! I’m in First Class from Seattle to Fairbanks. I have four hours of a flight attendant being nice to me. I try to watch the Descendants. Maybe on a big screen it’s not a terrible movie? I realize that I’ll never like things the rest of the world enjoys and I take a nap.

Arrive in Fairbanks close to 11pm, the sun hasn’t set fully. I’m relieved to meet some of the folks on the trip. Everyone is nice. Everyone is smart and interesting. This is unusual and lovely.

Tuesday:

Breakfast and a trip to the grocery store. I spend the next four days pulling organic apples and baby bel cheese out of my purse for anyone who might be feeling peckish.

Not everyone has arrived and we can explore Fairbanks for the day. We decide on the Chena Hot Springs and I’m all Reddit told me this would be good… you know because everyone should plan their trips with Reddit (and they should).

We toured the hot springs, the ice sculpture museum and the geothermal energy production. They are completely off grid and producing their own lettuce and tomatoes year round. At the ice museum we enjoy appletinis. I don’t typically enjoy appletinis but these are not to be missed.

After soaking very briefly in the hot springs we head back to the hotel for a powernap. On the way back to the hotel we see a moose. Kelly and I scream MOOSE so loudly that our host surely must be rethinking his entire career.

We have dinner, a few more people arrive including Stefanie and at 11 pm we head out to launch the first of three weather balloons. This is the map we use to get there.

Remarkably we get there. Apparently there aren’t many roads in Fairbanks. We pile out of a fleet of Suburbans and stand around waiting for something to happen.

The scientists fill the balloons and attach the payload. The payload is a half dozen GoPro Cameras, a GPS, some bacteria and an American Flag. The balloon will go about 20 miles up before popping and we’ll track it with the GPS and retrieve it.

At about midnight an arc appears in the sky. It’s light green, almost lemony looking. At the southernmost point of the arc red spikes start to glow. I think it must be the city of Fairbanks but then I realize that it’s the show. During the next two and half hours the sky swirls and explodes with rays of light turning red, green and purple. They shine and dance and we crane our heads and delight in what we are seeing.

I stand with Dr. Bering and ask him about what I’m seeing and he explains solar flares, solar storms, plasma and energy. I nod and I understand what he is saying but know that I am unlikely to remember. I wish my husband was there.

Reluctantly we leave at 3.30 in the morning and try to get some sleep. Sleep is hard to come by. We’ve just seen the majesty of science and I’m too excited to sleep.

Wednesday:

It’s too hot for dogsledding in the afternoon so it’s been pushed to 10am. We have a 9am breakfast and we pile back into the Suburbans.

Dogsledding is awesome. The dogs are small, the sleds are fast the mushers are Alaska’s version of surfers. They’re all passionate, fit and adventurous. The only unfortunate part is that the dogs are incredibly affectionate and they smell slightly worse than goats. I refuse to believe that Junior is related to them.

After dogsledding we grab a quick lunch and regroup. There is an optional trip to snowshoe out to retrieve a payload that had been launched a few days before. It’s approximately a mile away from the road. Maybe a three hour trek.

There aren’t enough snowshoes. At first I try being polite and saying I’ll do what’s best for the group and then I remember that this is my first and possibly my only trip to Alaska and I really want to go snowshoeing. They come up with another pair of snowshoes and we hike in to the middle of nowhere.

It’s magnificent.

Sometime around 8pm I’m lifting my leg out of two feet of snow and warm washes over me. This is the first time in two years that I’m not arthritic. I’m fighting back tears and I’m standing at the edge of the earth and my hands, hips, knees and ankles don’t ache. I’ve ached for so many years that I fear I’ve forgotten how it feels to not hurt.

There’s snow to my knees, my coat is too heavy for the relatively warm weather, I’m dripping with sweat and I’m crying a little because I think, just maybe, that I’ve hit that magical remission that the doctor had said we might get.

Here is the payload.

We get back to the Suburban by 8ish and pile in wet and smelly. Heroic we join the other 20 or so folks at a really nice restaurant in Fairbanks. Dr. Ben Longmier holds the payload over his head victoriously and everyone cheers.

There is a curious absence of ego. Perhaps that happens easily in a room where everyone is highly accomplished?

After dinner it’s back to the hotel for just 15 minutes and then back to our hilltop site to launch two more balloons.

This night the northern lights give a show that makes one woman weep. There are rays of light zooming into the sky with such power and such force that it’s hard to believe that we aren’t in a movie theater or an observatory.

Luke Kilpatrick took some amazing photos with a camera loaned to him by Robert Scoble. Luke was incredibly generous with his shots and shared them with everyone asking only for attribution. He explained that Robert had lent him the camera and he would share with same openness.

Which brings me back to the fact that this experiment costs approximately $1,500 for the first trial and significantly less thereafter. Science doesn’t require a million dollar lab.

I was tired and folks started leaving at 3ish. Back to the hotel at 3.30 again and it was a little easier to fall asleep this time.

I was sad to leave Alaska but thrilled to be reminded of the magnificence of the universe.

Thursday:

7am wake and pack.

7.45 go to the airport.

8.30 am Score first class and settle in to sleep. I don’t realize the plane has taken off. I didn’t know there was a delay. I was sleeping. Wake up ravenous and the flight attendant gives me a plate of scrambled eggs. I touch them to my tongue and realize they are shit. I am starving and eat them anyhow. I quickly fall back asleep.

Noon: Disembark the plane knowing we are late for the next one, look around and realize we are getting back on the same plane. I moan about how shitty my seat is and score another first class upgrade. Lucky me.

12.30 board the plane with a splitting headache.

12.45 lose breakfast.

12.55 apparently there was more breakfast.

1.15 angry flight attendant takes pity on me and gives me crackers she’d brought from home

1.25 goodbye crackers

At this point all of first class is using the lavatory at the rear of the plane. I’m too tired and puny feeling to even be embarrassed by this.

3pm in the taxi line at LAX and I have to let three cabs go. They smell so awful that surely I’ll retch. After some frustration I tip the guy at the curb nicely and find a cab driver that neither douses himself in cologne nor smokes.

5pm I’m cooking dinner at home. Because… ya know… they’re hungry.

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.

The numbers are staggering. We have very good insurance, and I’m grateful for that. I’d like you all to see what it costs to live with RA and Mr G’s totally routine outpatient shoulder surgery.

This is one calendar year of healthcare costs for a family of four in one of the richest nations in the world.

I’m speechless.