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.

RA and Non-Remissions

07.16.13

I hate the word remission because I’m not in one. I’ve never been in one. I mean technically the first 38 years of my life were a remission and the next 50 will be something else.

Today’s an injection day and one of the reasons I’m grateful for an every 25 day injection schedule is that I only feel like a patient every 25 days. For some reason aches and pains don’t make me feel like a patient. Fatigue does. I find the fatigue to be the most debilitating part of this disease and it depresses me to no end.

Today is a little different. Right now I’m leaving my injector pen out of the refrigerator for 20 minutes before I shoot up and I’m feeling mostly grateful that I just threw out a full bottle of Tramadol. After a year those pills expire and of the 30 pills I picked up at the pharmacy I think I only took four of them during the course of the year and one might have been for menstrual cramps. Normal people might take three narcotic tablets in a year. I’m not in remission, I’m not without pain but I’m in the normal zone and brimming with gratitude.

I haven’t been for acupuncture in a while because I haven’t had a flare but I’m a terrible patient and an ignorer of pain. There’s a dull ache in my shoulder that I should probably tend to and my tennis elbow is close to zero. I’d changed my tennis membership at the club over to a fitness membership and I’m hopeful that in a month or two I’ll pick up a racquet again.

I feel like crap (and get fat) when I eat wheat and sugar but I eat wheat and sugar. I’m flawed. Deeply. Tomorrow I see the rheumatologist and it’s long past time for me to have some wrist and foot x-rays. I’ve been able to run… okay jog about a mile on a padded track without excruciating foot pain the following morning but there is pain and I need to talk to my doctor about what sort of risk that really is. I love to run but a body with Rheumatoid Arthritis has a limited number of steps it can take. And no, I do not wish to swim. Pools for for floating.

This sort of non-remission is pretty good stuff. My body isn’t a total hostage but it’s not completely free. Or maybe I am captive to my immune system and I just have some sort of Stockholm Syndrome where I used to hate it but am growing to accept it.

I’m Completely Unable to Keep My Commitments

06.18.13

I just don’t have enough hours in the day.

Jane is now a seasoned CIT with exactly one day of work under her belt. When I picked her up from camp yesterday at three she plopped into the passenger seat and started talking. At 4.30 she stopped talking. It was abrupt, she was finished. She had observed that five year olds don’t have filters and they tell you the truth. They also tell the truth when playing things like Fireball. They admit to being out when the ball grazes them. She thinks that kindergarten will cure them of their honesty in both good and bad ways. Five year olds are cute, really cute (according to Jane) and she is convinced that her group is the cutest group because their moms are all models. This may or may not be true I’ll need to call the owners of the camp.

This morning Jane wasn’t feeling well and didn’t want to go to camp. She wasn’t sick, just worn out. Completely worn out. Alexander is trotting off to tennis camp joyfully and still somehow has energy to spare.

The kids don’t have homework in the summer, which is obviously fantastic, but I hadn’t realized just how much I relied on that quiet homework hour to get my own stuff done. I’m behind on posts, I barely use twitter anymore and don’t even ask me about exercise. I’m just behind on my life.

I spent the morning filming for a show I can’t tell y’all about but here’s a hint, it’s part of Glass Elevator Media and it’s going to force you outside your comfort zone (I know, shocking). After filming the talent and I (I’m so Hollywood that I can’t tell you her name but I can call her The Talent) went to lunch to talk about what had just happened and sat down next to two women I’d gone to middle school with. These ladies are perfectly maintained (not surgeried but they look pampered) which made me think that I need to get my ass in gear. This whole “natural” look isn’t doing me any favors.

Tangentially, I’ve been to Australia twice this year and recently wrote a post for iVillage AU about the onset of my Rheumatoid Arthritis. I’m really not sure how to talk about it today because I am in a completely fucked up place with my hands but I just read the world’s whiniest post ever about living with RA and it leaves me with little sympathy for the people I have the most in common with. Does that even make sense? Also Kelsie is having a hard time and it makes a little joint stiffness seem like a cake walk. Part of me just aches with empathy for her and the other part of me is aggravated that I can’t visit, not at her, just really annoyed by the situation. I get the fuck cancer sentiment, I really do.

I’m going to miss the Window’s Champion Webinar today because I’m the worst Champion that Windows ever hired but I can tell you one thing you need for summer travel. XE has an app for Windows 8 and it’s fantastic. I’ve always used XE.com for currency conversion. The app features live rates but it also stores your latest update so if you’re out of range (as travelers tend to be) it will still work. Also if you’re headed off to school and have a .edu email address Microsoft will chip in 10% of the cost of a new computer when you set up a chip in campaign.

microsoft chipin

I’ve got to grab Jane from the movie theater, she and her friend Rob are seeing The Purge (you can judge me now) and then pick up Alexander from camp. I’ll throw some food his way and then take the kids to a screening of Monsters U. I’m going to not sleep in the movie. I’ve learned to try and set attainable goals for myself.

 

How to Ignore Pain and Hurt Your Body More: A Lesson in How to not Live with RA

04.3.13

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.