You’ve Just Been Diagnosed with Rheumatoid Arthritis, Now What?

02.9.14

The moment when you’ve been diagnosed with RA can last an eternity. You’re sitting in a rheumatologist’s office and the doctor is explaining to you what Rheumatoid Arthritis is, and probably what it was. Because what RA is and what RA was are two separate things.

Sitting in the waiting room can be a terrifying experience. Elderly men and women in wheelchairs, on walkers or sporting canes, gnarled hands and shuffling feet. RA was a different disease 15 years ago. It was a different disease 50 years ago. When your doctor tells you that you have RA he or she is probably also telling you that what you see in the waiting room is not your future. You are unlikely to hear that so I’m going to tell you now: Disease modifying drugs have changed what it means to have RA. Don’t panic. There’s a good chance you and I will keep all our original joints.

Immeditatly upon leaving the doctor’s office call your mother and complain to her. RA has a genetic component so either your mother passed it down to you or she picked the man who did. Either way mothers are easy to guilt and if you call her whiny the odds are pretty good she’ll come and cook you dinner or send you gifts. You’ll need that dinner cooked too because at the time of diagnosis the odds are good that you’re in a lot of pain, have fatigue or both.

Something that no one told me about the day you get diagnosed with RA is that it’s quite likely the worst day you’ll ever have. If you have a good doctor (and if you have to beg, borrow, steal or max out credit cards to get a good doctor I recommend it) this should be day one of the upswing. You’re likely to leave the office with anti inflammatories, possibly pain relievers, possibly steroids (short term don’t panic) and a fist full of paperwork including referrals to specialists.

When you go check Dr. Google you’ll land on the NIH website and see this image.

rheurmatoid arthritis hands NIH

In fact you’ve probably seen images like this one at your rheumatologist’s office. Maybe even people with hands and feet like these in the waiting room. You are not necessarily looking at your future. Biologics have changed the way the disease progresses but they’re a new class of drugs so the folks whose disease was active 20 years ago couldn’t have the benefit of disease modifying biologics.

Don’t bother telling people you have rheumatoid arthritis. They’ll start telling you about their bum knee from high school tennis and you’ll want to punch them but that would hurt your hand. Or they’ll mention something about getting old… again… punching people when you have RA is really painful so just don’t mention it to folks that will never understand.

Do bring your spouse, sibling or close friend with you for at least one of the initial appointments. There’s a lot of information that the doctor will be giving you and it’s easy to get confused particularly when you’re in pain.

Do get an RA notebook. Bring it to every appointment and take notes. Again, being in pain makes it tough to keep track of things and you’ll be pelted with information that you’ll need later. Make sure to date the pages on it so that you can keep track of progress, what works and what doesn’t. A sturdy notebook goes a long way.

Don’t take advice from anyone who hasn’t been to medical school. You will get calls and emails from friends letting you know about alternative therapies: everything from juice fasts to liquid silver and elimination diets. Although a good diet can be helpful and complementary therapies like acupuncture, diet and floating have helped me a lot they are no substitute for medical intervention. Alternative therapy = bad. Complementary treatments = good. It’s more than semantics kids. We’re trying to be healthy here.

Do get a second opinion. Even if two doctors tell you exactly the same thing it will have been time and money well spent. Remember it’s the art and science of medicine. Not all physicians are created equal.

Do pick an office that feels right to you. I visited three rheumatologists in the beginning and ended up staying with the doctor whose office was always on time (which also means that if you run late you will lose your appointment and have to pay for it) and where the doctor writes long and complete reports after each appointment. He speaks to me and then repeats everything into a voice recorder and it’s entered into my records. Other specialists seemed a little warmer but less organized. This was the right office for me and if you’re in the Santa Monica area I’d be happy to privately share his information with you. You’re going to spend a lot of time with your rheumatologist until the disease is controlled. Find the right person to be your partner.

Don’t go on message boards. Think about it: when do you talk about RA? I talk about it when I’m hurting, when I’m pissed that I’ll never run another marathon and when insurance is acting screwy. I don’t talk about RA when I’m feeling good. I all but forget that I even have it on good days. You’ll read about people having adverse reactions, fear of wheelchairs, depression (it comes with chronic pain) and job loss. Skip it when you’re feeling down.

Do continue moving. If you have access to a pool just get in it and walk on bad days. On good days exercise until you feel pain. Not muscle pain, when you feel that you can keep going but the second you feel joint pain stop. Joints aren’t like muscles, we can’t train them to go farther, work harder or get stronger. When your joints hurt do listen to them. Stop what you’re doing, apply some ice and be gentler to yourself the next day. We’re running a new kind of marathon here.

Don’t be a martyr, when you have pain slow down. Living in chronic pain will make you cloudy. Be careful with Tylenol (acetaminophen). Your doctor will talk to you about never taking acetaminophen when you’re drinking (not even a little bit) because it’s affects on your liver can be disastrous. Your doctor will talk to you about ibuprofen, naproxen or prescriptions like Celebrex. I don’t want to give medical advice, they all have their pros and cons. All I know is that acetaminophen is far from benign and people with Rheumatoid Arthritis take a lot of pills. This is why you need your RA notebook. You will get a lot of information from your specialists.

Don’t panic about pricing if you have private (non government) insurance. Almost every medicine on the market that doesn’t have a generic equivalent will have cost support program. If you’re taking Humira you can pay as little as $5 a month, Enbrel is free for 6 months and then maxes out at $10 a month thereafter and Simponi is $5 a month. Most branded medicines in the US have cost support, here’s Lunesta for free if you have private insurance (which would still leave you paying an awful lot). It’s expensive having a chronic disease. Take advantage of programs like these. Enrollment takes minutes, sometimes just seconds.

Don’t give up. Getting a diagnosis of Rheumatoid Arthritis is possibly the worst thing that’s ever happened to you. The fear of it is worse than the reality. The reality of RA is that you can be out of pain (or mostly out of pain) and live a pretty normal life. It’s shocking and it’s scary and it’s creepy to imagine that your body is attacking itself but it doesn’t have to stop you in your tracks. It might slow you down but only temporarily.

 

Do You Play Through the Pain?

01.31.14

I’ve had a lifetime of joyful physical activity. From a childhood on the beach with hours spent in the ocean, on bikes, in the sand playing soccer and volleyball or hiking in the cliffs, there was never a day we kids weren’t in motion. As a teen I learned to love running and as a college student I took up mountaineering and cycling, both on the road and on the trails. Early adulthood brought me back to running and it was only during the 2007 City of Angels Half Marathon that I thought to myself, “If I play tennis there’s a pretty good chance that I’ll win. If I keep doing these runs I’ll never win a thing.” And because I missed competing I took up tennis. In retrospect it’s also the first time I knew that something was wrong with my body. I felt fatigue and joint pain and intuitively knew there was a problem, a big problem and decided to ignore it.

I’m not a great tennis player. I’m not even very good. I’m a solid 3.5 club player and the only reason I’m a 3.5 and not a 3.0 is because when we get to the third set I’m not tired. I’m just starting. My body is built for distance. I’m happy running (now quite slowly) for a couple of hours. My lungs feel like they’re full of glass the first 20 minutes but sometime around 30 minutes in they feel full and sweet with air and near the end of the first hour I feel a surge of lightness and joy and that’s when I know I’m about to have fun.

When I exercise I stop thinking in words and that’s the most important benefit that exercise has given me. This brain shut off comes around the end of the first hour and it’s a joy unlike anything I’ve ever known. It’s higher than any drug and sweeter than any candy. You know the sound of a baby’s laugh? My body feels like that laughter has been bottled and injected into my veins for a full hour. It’s bliss. Golden bliss.

Except that a year ago my tennis racquet fell out of my hand. And I dropped a dinner plate because my hand couldn’t support it. And the acupuncture that I was having three days a week wasn’t taking the pain away and I’ve completely forgotten what it’s like to live in a body that doesn’t hurt. I don’t even miss the pain free feeling anymore because it’s so unfamiliar, so lost.

My elbow hurts. Most days it only hurts a bit. I’m still having acupuncture and doing the physical therapy that was prescribed to me a year ago. I haven’t required a pain pill and I’m using topical anti inflammatories only. I can pick up a plate and I even bowled right handed (though the score is really no better than when I use my not dominant left hand). I miss tennis and I’m ready to get back to it. Perhaps even with a small ache in my elbow.

I’m going to beg the doctor for a cortisone injection next week and live my life again. I can’t be a runner again. Yes, I can run about 3 miles straight and not ache the next day but if I run the fourth it’s impossible to get out of bed the following morning. For some reason the side to side, sprinting and bouncing of a tennis court hurt a lot less and quite often not at all.

When I was younger and wanted to run faster, jump higher or just look better I trained through the pain. But before rheumatoid arthritis the pain wasn’t debilitating. It was the sweet pain of muscle growth. This new pain is the pain of joints deteriorating and I have to decide if I want to be happy now or later. Part of me knows that getting back to tennis without being 100% healed will hurt me down the road, but the other part of me really needs to play. It’s the part that needs to compete and is bored silly with Pilates. I’m at war with my own immune system. Hopefully my rheumatologist can give me secret weapon next week.

Early Mornings with Jane

10.31.12

This is the second year that Jane isn’t playing soccer and she’s missing the running. Volleyball is fun and all but soccer was 6-10 hours of running each week. When I picked her up from school she was pissed that she was running six laps in 4.20. “How many laps are in a mile?” I asked her. When she told me there were 10 I sort of gasped too. That’s a lot slower than last year. Probably a minute slower, my girl used to lope and everyone knows the last quarter mile isn’t as fast when you’re 13 (well, almost 14).

I told her I’d run with her. I’m not as fast as I used to be but I can still get in a solid mile or two. She said she didn’t want to just run in circles. I don’t blame her. She said she wanted to go to the gym. She wanted to go on the elliptical. I told her the only time to go would be after dinner because Alexander needs me in the afternoons and we tried to go a few times but we were both just too tired.

I tried to outsmart my daughter and most mothers know exactly how that ends. I told her that the only time I could take her to the gym would be 6am.

She set her alarm clock for 5.45 and yesterday morning I was on the elliptical from 6 to 6.45 while Jane gleefully bounced next to me on her very own. While I worked up a sweat with eyes half closed I told myself I’d  be okay because I had acupuncture in the afternoon and acupuncture is code for nap time. Everyone knows that right?

On the way to school Jane was sleepy in the car, she didn’t quite snore but she definitely rested her eyes. I assumed that one early morning would be enough for her but I’ve just been informed that we’ll be at the gym Friday morning, she enjoys cardio for it’s own sake. At 6am? At least one of us is enjoying it.

 

 

 

Training With RA Update

05.6.12

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.

plank

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.

Oprah, Gratitude and Pocahontas

03.15.12

The travel plans are coming together for Oprah’s LifeClass and it’s not the way I’d have planned it. Yesterday I was grumpy about it, I didn’t understand why anyone would travel in this manner and I was ThisClose to just walking away from the project. I am not a low maintenance traveler and it’s not one of things I’m trying to change about myself.

Well, maybe it is.

This week has sort of conspired against me and I haven’t been able to exercise as much as I ought to. I’ve had a long walk but it was a slow walk because it was a cold morning. I had tennis but it was doubles and that’s not always very satisfying, yoga was a bit of a bust too. These aren’t the biggest problems that anyone could have but moving my body is such a link to sanity for me that having three of these days back to back was crushing. I’ve been cranky and ill tempered.

I complained to Chelsea about the flights and thought maybe they’d allow me to travel on my own. To her credit Chelsea did not say, “Listen lady we’ve got 200 people to fly around you’re not that important.” She did patiently explain that hundreds of people would be flying in, which was something I didn’t understand. Then she explained that there were no airline choices, Ms. Winfrey has a longstanding relationship with United. It started making sense to me but I was still irritated and wondering if taking connecting flights was simply a sign that this isn’t the right trip for me. I told her I’d sleep on it.

Shortly after the LifeClass call one of the Pocahontas’ called and asked how things were and she immediately got an earful from me. I was bitching and complaining and what’s in it for me’ing when she interrupted me with he sage mommyness. She began with, “Oprah changed my life.” And then interrupted my eye roll with a story about how she tried writing down 5 things she was grateful for each day and how it reframed how she looked at her life. I was tired, I was cranky (yes I sound like a toddler) and I listened but wasn’t ready to absorb it all.

This morning I went to the kids’ chapel because Jane thought she’d made honor roll. She worked hard for those grades but part of me was a little disappointed that she didn’t make Dean’s List. Negative much? During Chapel (I know… we’re not supposed to) I was whispering with another mom and she asked about the LifeClass. I complained about the travel.

I complained about being called by the Oprah Winfrey Network. I complained about being taken to three cities and two countries and I complained about the timeline. I heard myself talking like an angry and selfish woman but somehow didn’t have the presence of mind to stop.

I went to tennis, singles this time. As I ran across the court I smelled orange blossoms from the tree that stands near the baseline and a wave of goodness crashed over me. I’ll never know if the endorphins or the scent memory triggered it and I’m not sure it matters.

I am grateful. I stood on the court in that very moment and was grateful for the kind of life that has me playing tennis in a friend’s back yard on a Thursday morning while the smell of orange blossoms tickles my nose. I am grateful for a daughter who is both smart and hardworking. I am grateful that I’m able to move.

In that moment I was able to reframe my position and look forward to trips that are going to feed me with wisdom and knowledge. Just like Pocahontas said, the gratitude didn’t change my life, it changed me.