Oh.My.Gosh.Really?

WARNING: I’m going to rant a lot right now and use some “unsavory” language.

I am so tired of the misconception that arthritis is a disease for old people. There are so many stories on the fact that this is so untrue. One of my favorites is this one from New South Wales Young Adults With Arthritis. They also have a fun article about the perils of being involved with “Arthur.” And, one of my favorite features on the site is their section for family and partners.

Obviously, I know that there is a problem with people knowing about arthritis’ effects on the younger population, and that’s why I have this blog. This disease has forced me to stay home when I’d rather be out being a young adult and enjoying myself. It has made me contemplate suicide and the value of life on more than one occasion. I try to think about how things could be worse, but then all I see is a vision of myself waking up one day paralyzed or blind and unable to do anything. I feel like I am slowly losing my dignity and I don’t understand why others seem to care so little. [Background: one of my ex-boyfriend’s dick friends made a comment: “Arthritis? What are you, 80?”]
I’m tired of feeling like I don’t want to do anything. I don’t like not being able to exercise as much or even walk to my classes without being in extreme amounts of pain. Last night I was super sick to my stomach because I fucking ate spaghetti – SPAGHETTI! I’m Italian, I love spaghetti. I had rash all over my face and hands while at work, which is just embarrassing.
This disease is one of the most terrible and debilitating. To know that things could get ridiculously worse in an instant often overshadows any feeling of gratefulness I have for being as “healthy” as I am. It is ridiculous that I don’t have the ability to do normal things when I want to, but instead have to plan out things like trips to museums and even a nice summery walk outside. I am in pain almost 24/7, with medicine barely doing anything when I take the “recommended dosage.” I constantly worry that I’m going to OD on Aleve and Advil. I know that my body can’t handle the side effects of other medicines any more than it can handle the pain I’m generally in.
So what can I look forward to? A cure? They don’t even know what causes the disease really, so why would I think that a cure is going to come in my lifetime? No, instead I can look forward to more pain. I’ll have to modify my life even more as time goes on and arthritis gets worse. I rarely dance anymore as it is, but I doubt that’ll happen someday when I’ll probably end up in a wheelchair. I’ll more than likely end up with hands that look like claws, but I don’t have Renoir’s persevering spirit. Any intimate relationship I have is going to be virtually ruined by the disease, not to mention the fact that 85% of marriages with one partner having a chronic disease fail (the actual statistic is from the description of the above link on another page). The relationship that I’m in right now is wonderful and that is the last thing I want to think about. Still, I go between wanting him to know everything about what’s wrong with my body (and mind) to not wanting to tell him anything because I feel like I’m burdening him and I don’t want to push him away… to trying to push him away a little. I just don’t know how to handle it.
I wouldn’t wish this on anyone else. Still, I can’t help but wonder why in the world I get to be one of the people with the disease. Why was it decided that this one family gets to suffer through this disease and others related to it, while another gets to be full of star football players or ballerinas? I’m sure that anyone can see why, as far as a deity goes, I’m an atheist – how can a god be present in a world where there is injustice all over the world and so much pain for people?

Update

We’re down to the final two big-name celebrities (that I can find) with RA. Look for those sometime soon.

Unfortunately, I’m super exhausted and it’s only Monday night (Tuesday morning?). My right shoulder started aching like crazy Friday night and it’s been pretty difficult to keep the pain under control – something made worse my pain in my knees and ankles. I’ll be honest, I’m trying to not take medicine as often because I know I’m taking more than the recommended dosage. I also know that I’ve built up a tolerance and have to take more in order to get the desired effect.
One of the most useful tools in my pain-fighting arsenal is a minty roll-on liquid. I have no clue where or when my mom found this wonderful thing, but it has definitely saved my sanity on more than one occasion. There is a spray and a roll-on. I only have experience with the latter. I have only ever had two problems with it – reaching the right spots on certain joints (i.e., my shoulder) and a minimal amount of spillage. That said, the product is a wonderful thing to keep with you just in case you have a flare-up that doesn’t seem to respond as well to medicine… or if, like me, you have a somewhat unhealthy relationship with your OTC pills.

Jamie Farr

Farr is one of my favorite actors. He spent eleven seasons entertaining us on MASH.

Jameel Joseph Farah was born into an Antiochian-Orthodox-following Lebanese family in Toledo, Ohio. His first film was Blackboard Jungle, where he played the mentally challenged student Santini. He appeared on several different television shows with bit parts and that’s actually how he was cast as Corporal Klinger – he played a character in one episode and the producers liked him so much that they kept him on. He went on to star in AfterMASH and in Cannonball Run and its sequel.
Farr was diagnosed with Rheumatoid Arthritis in his hands in the early 1990s. This hasn’t slowed him down, though instead of acting these days, he focuses mainly on charity work. In 1984, he helped start up the Jamie Farr Owens Corning Classic, which has donated millions of dollars to charities.

Pierre-Auguste Renoir

Most people don’t know that Renoir had Rheumatoid Arthritis. His arthritis was some of the most crippling I’ve heard described… and yet, he managed to bring such beauty through his art.

When Renoir was 57 (1898), he suffered what appears to have been his first major flare up. During the winters, he stayed in the warmer region of southern France. During the summers, he would try to get as much medical treatment as possible. After not very long, Renoir experienced deformities and terrible dry skin.
By 1904, Renoir had shrunk to a tiny 105 pounds and found it very difficult to sit. By 1910, he was forced into a wheelchair when crutches became too hard for him to use. His hands were claw-like and could no longer pick up his paintbrush. Instead of giving up, he had someone else wedge the brush between his fingers and he continued to paint everyday… unless he had a major flare up and couldn’t even get out of bed. Because of how much pain he was in, he even had a wire contraption around his bed to keep the covers off of his body.
From time to time, he would be paralyzed from his arthritis. After this would subside, he would continue painting. He had a special easel which helped him to reach more of the canvas. By 1912, Renoir’s left arm became permanently paralyzed. He began to create sculptures, with others doing the hands-on work. In 1915, Renoir was finally able to paint again, though he now had to be carried to his easel. He later died in 1919.
His story is one of immense pain, but perseverance. To think that he only stopped painting for three years, despite his deformities and suffering, is just amazing. He really is my new hero.

James Coburn

If you’ve ever seen Westerns from the 1960s and 70s, you probably know this actor. He’s also in one of my favorite cult movies, Hudson Hawk (you should check it out, only if it’s so you can see David Caruso as a mime).

Coburn enjoyed a very vibrant career throughout the 60s and 70s. In 1979, he was diagnosed with Rheumatoid Arthritis. By the mid-80s, his disease forced him to limit how much he worked. As an actor, he was featured in mostly action films, so I’m sure that didn’t help how his disease progressed at all. At its worst point in the late 80s and early 90s, Coburn’s RA nearly robbed him of his ability to walk.
In the 1990s, he began to see a holistic therapist and, when in an interview in 1999, claimed to be cured of RA. His treatment consisted of deep tissue massages, treatment with electromagnets, and the naturally occurring form of sulfur known as methylsulfonylmethane, or MSM. MSM is a normal part of the human diet and is found in all sorts of things.
Before you go out and decide to take MSM, research it. While the bulk of people on MSM were shown to have a lower pain level than those on placebos, there is really not enough medical research being done on it to say that it is a cure. Since MSM is a nutritional supplement and not a drug, it doesn’t have to go through FDA trials. While this makes it more readily accessible for the public, it also can lead to a lot of false claims.
In my opinion, MSM didn’t cure Coburn’s RA. That combined with his other treatments simply helped him to feel less pain. Sometimes if someone wants something to work really well, it will. I know that I have felt less pain at times and then considered that the RA could’ve gone away. Sadly, I am always proven wrong.
Coburn died of a heart attack at the age of 74 in 2002 while listening to music with his wife. She died from cancer shortly after, in 2004.

Camryn Manheim

Manheim is one of my favorite people. I love her acting, but I love her personal sense of responsibility to others even more.

She works a lot with human rights charities, especially those pertaining to feminism, body image, and gay rights. On her personal website, she has a lot of links to different charities that she gives to and encourages others to do the same.
I will let Manheim speak for herself (mostly) about her arthritis (from October 2005):

Teaching sign language in her son Milo’s preschool class last year, Camryn Manheim felt a sharp pain in her left hand as she tried to form a word to a favorite tune. “We were singing ‘Old Mac-Donald had a farm/ E-I-E-I—ouch!’ ” she recalls. Manheim, who played attorney Ellenor Frutt in The Practice from 1997 to 2004, went to several doctors to find out what was causing the stiffness and pain in her hands. After eight months of searching, she got a surprising answer: At 44, Manheim had rheumatoid arthritis, a disease that affects about 2 million people—70 percent of them women. Finding relief through twice-weekly injections, Manheim, who lives with 4-year-old Milo in Venice, Calif., is once again swimming and Rollerblading—and hoping to help others receive a faster diagnosis than she did.

About a year and a half ago, I just wasn’t feeling myself. I was feeling aches and pains in my hands, which was upsetting to me because I’m a sign-language interpreter—I use my hands all the time. I could hold a pen or a cup of coffee, but it was difficult. I was starting to feel fatigued too. I had to have somebody run alongside Milo when he was learning to ride his bicycle without training wheels. I had somebody else in the pool with him. I had somebody else doing hula hoop with him. That’s not the kind of mother I wanted to be. I don’t know that he could tell I couldn’t be there for him as much as I would have liked—certainly not in a way that he could express. But it was clear to me and that made me sad.

So I went to an orthopedist and his response was all these little tendons in my fingers were tight. And the doctor said, “Well, maybe you’re being a little overactive with your son.” That was not the answer I wanted to hear. So he sent me to hand therapy, and I went for several months. It wasn’t really improving my hands. Then the therapist gave me hand braces that kept my fingers folded down into the palms of my hands. It didn’t help.

Her doctor then prescribed steroids.

Immediately I felt some relief because they are an anti-inflammatory. But as soon as I would go off them the swelling and the pain would return. In between all this I did Elvis [the 2005 CBS miniseries]. I took a lot of ibuprofen. But I’m an avid knuckle cracker. I tried to crack them one day and it sent the most incredible pain up my arm. I was determined to find out why I was in so much pain.

Finally, in May, she got a referral to a rheumatologist.

So I get there and he’s like, “Put the gown on.” And I said, “Why do I have to wear a gown? It’s my hands that hurt.” And I’m thinking to myself I didn’t even wear nice underwear that day. He did blood and bone density tests and took X-rays. When he told me it was rheumatoid arthritis I said that’s the craziest thing I’ve ever heard. I’m too young. Well, I learned I was mistaken.

I didn’t know what rheumatoid arthritis was. It just sounded bad and debilitating. But the doctor told me there had been breakthroughs. Now, twice a week I give myself a shot of a drug that reduces inflammation. I think it took about three weeks for me to notice a difference. And then I would say after about the second month I wanted to marry my doctor. What a relief! My son is 4½ now. He thinks giving me my shot is about the most fun thing in the whole wide world. Maybe he’s trying to get back at me for the toy I wouldn’t buy him because he’s always like, “Can we do it again, Mom?” He has a sense that I take medication so that I’m healthy and happy and I can be there for him.

Manheim has slimmed down visibly in the last two years.

I started to add exercise into my life and to add healthy eating and taking care of myself. I want to be a great role model for Milo in everyway, so I had to start with myself. I play racquetball, Milo and I swim, we Rollerblade, we ride bikes, we hike. I still play guitar. I feel great. You know, the thing is you have to get the proper diagnosis and then you can get the proper treatment. Then you can put it behind you and live a full and eventful life.

It is good to see that she, unlike some people, has had a great reaction to her medication and is able to live a (mostly) normal life.

Sir Christopher Lee

This well-known horror actor has been in over 250 films since 1948. It’s an amazing feat, no matter who you are, but especially for an eighty-seven-year-old man suffering from RA.

This recently-knighted actor was literally born into royalty. His mother was a Countess and his father a Lieutenant-Colonial in the King’s Royal Rifle Corps. His mother later married Ian Flemming’s uncle. He went on to join the Royal Air Force and served during World War II.
Lee’s first film appearance was in Laurence Olivier’s Hamlet (1948). He went on to appear in many loved B movies, including Dracula (1958). Most people nowadays know him from his role as Saruman from LOTR and Count Dooku from the second and third episodes of Star Wars. He has also worked a lot with one of my favorite directors, Tim Burton. Lee had a small role in Sleepy Hollow, voiced the Pastor in Corpse Bride, and played Wonka’s father in Charlie and the Chocolate Factory. Lee is also the voice of the Jabberwock in the soon-to-be-released Alice in Wonderland. He has a few more films in the works right now as well… including taking part in a heavy metal musical about Charlemagne.
Unfortunately, while I can find a lot about this talented actor’s work, I can not find that much about his battle with RA. All I can find is from this comic book website:

Although Lee is known to suffer from Rheumatoid Arthritis (which is one reason why his hands are rarely photographed today), at an age [87] when most performers would have already scaled back their work, Lee has virtually reinvigorated his career in the 21st century, posting featured roles in many top box office blockbusters including Sleepy Hollow (cameo), The Lord of the Rings: The Fellowship of the Ring & The Two Towers & The Return of the King, Star Wars: Attack of the Clones & Revenge of the Sith, Charlie and the Chocolate Factory, Corpse Bride, The Golden Compass, Alice in Wonderland and he provides voice work for the popular Cartoon Network animated series The Clone Wars (reprising his role as Count Dooku from the Star Wars films).

For more on his life, visit his personal website.

Aida Turturro

If you’ve ever watched the Sopranos, you know exactly who this fun actress is. She’s played several smaller parts in movies and turns up in interesting places – almost like an Easter egg.

Turturro was diagnosed with JRA at the age of twelve. When she was diagnosed, there was literally nothing in the way of treatment – heck there was still very little when I was diagnosed in 1995-ish. She just put up with the pain until she began to learn a lot about her disease and the treatment options open to her.
She has also taken a leading role in the education of others. She hosted a series of free seminars (part of the Joint Effort Against Rheumatoid Arthritis program) for those afflicted with arthritis to come and learn more about the disease and how to deal with life – exercise, diet, and treatments. This has also created a support network for those who were able to attend.
Turturro knows that life can always get worse for her and others with Rheumatoid Arthritis though:

“I’m lucky because my disease hasn’t progressed too far. Sometimes I have good days, sometimes I am in a lot of pain – but I never really let my RA stop me from doing the things I want to do. I know that there are a lot of people out there for whom the disease has progressed to a debilitating stage”.

In 2001, she was also diagnosed with type-2 diabetes. For more on her battle with RA, visit this story.

Matt Iseman

This physician-turned-comedian should be easy to recall for you reality tv nuts out there. He’s only one of the guys on Clean House.

He quit being a physician because he grew to love making people laugh. He doesn’t practice anymore but does frequently entertain other doctors with his personal stories. On Clean House, he is the go-to handyman. When he works on a project, it doesn’t seem as though there is anything wrong with him.
Oh, and according to his bio on the Clean House site, he really likes breakfast.
I will let this interview, featured in Headlines from the Arthritis Foundation, speak for Iseman:
Matt noticed symptoms of pain in his hands and feet during the summer of 2001. First he went to a podiatrist and received some medications for his feet. He then moved on to cortisone injections and continued taking aspirin. But when the symptoms didn’t go away, Matt finally had blood work done. The tests came back confirming that he had an aggressive case of RA.
“My pain was so bad I even tried acupuncture. The acupuncturist stuck 67 needles in me…I became my own voodoo doll!”
So what is Matt’s “Prescription for Laughs?” It’s the name of his stand-up routine that he performs at physician conferences. He also performed at the Arthritis Foundation National Development Conference in 2006, where he joked about his rheumatoid arthritis and had the room in stitches. “I like to use the jokes to give others with the disease hope and to thank those who work to create the cures that benefit me,” says Matt.
When he performs in the medical setting, Matt strives to make people laugh because he wants them “to understand that living with a chronic disease doesn’t mean life is over.” Matt also says that “I want to thank the doctors, nurses, scientists and the volunteers who have tirelessly worked to find these new treatments that have helped me out so much.”
Laughter is definitely one of the best forms of medicine. For more on Matt and what he’s up to lately, please visit his website.

Bob Mortimer

I’ll be honest, I didn’t know who he was before researching RA. He is a British comedian and actor who co-owns Pett Productions.

Mortimer’s mother also suffers from Rheumatoid Arthritis; he was diagnosed in 1989. The 50-year-old actor began to draw attention to the fact that arthritis is not an old person’s disease in 2002 when he began to open up more about the ailment to the public.

In the My Kind of Day column in the latest Radio Times, Mortimer says: “I have to be careful because I have rheumatoid arthritis all over my body. Steroids keep it under control – it’s treatable, but not curable, and it flares up with a major attack every now and then.


“The doctors can only give you steroids and statistics, such as there’s a one-in-ten chance you’ll end up in a wheelchair. (My mum is crippled with it.)”

For more from Mortimer, visit this short BBC interview. For more on arthritis and interesting Still’s Disease stats from the UK, visit this Gazette Live piece.