Friday, January 29, 2010

I Love Adam Sandler

This really isn't very arthritis-related, but I felt the need to share something.

Adam Sandler, especially in his earlier films, has a unique way of capturing how the common person feels about certain issues. A lot of his songs don't translate all that well to the piano, since he generally plays the guitar, but you can find the sheet music for my favorite AS song online if you look hard enough (I was going to link to it, but I can't seem to find the site I found it on originally, haha). It isn't all that hard to figure out on your own either, if you have the ear for that sort of thing.

I wanna make you smile whenever you're sad
Carry you around when your arthritis is bad
All I wanna do is grow old with you

I'll get your medicine when your tummy aches
Build you a fire if the furnace breaks
Oh it could be so nice, growing old with you

I'll miss you
I'll kiss you
Give you my coat when you are cold

I'll need you
I'll feed you
Even let ya hold the remote control

So let me do the dishes in our kitchen sink
Put you to bed if you've had too much to drink
I could be the man who grows old with you
I wanna grow old with you

Wednesday, January 27, 2010

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 the 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?

Tuesday, January 26, 2010

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 spill-age. 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.

Oh, and courtesy of my friend Shelby, please enjoy these pillows. {Because of Shelby's awesomeness, you can expect a new feature on most posts - a funny, random thing to make you smile. :) }

Monday, January 25, 2010

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.

Sunday, January 24, 2010

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.

Saturday, January 23, 2010

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 an holistic therapist and, when 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.

Friday, January 22, 2010

First Week of School

Well it's (almost) official - I've made it through the first week of school (as of this afternoon).

I'm sure that this has something to do with the fact that I was sick and that I've been out of school for a month, but I'm super exhausted. Last night after work, it was just so difficult to walk around and I found myself very tired very quickly. Waking up this morning finds me virtually no different, although I may actually be feeling worse since it is the morning. My joints are all very stiff, but my knees, ankles, back, and shoulders seem to be the biggest weak points right now.

I'm sure that it doesn't help that I've jumped right back into working right away this week and don't have much time to recover.

I have also oddly noticed that I'm hungry more often. It could just be that since I was sick I didn't have a lot of an appetite and, now that I'm getting better, it has finally started to return. Whatever the reason, I clearly need to go eat breakfast before class.

Thursday, January 21, 2010

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.

Wednesday, January 20, 2010

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.

Tuesday, January 19, 2010

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.

Monday, January 18, 2010

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.

Sunday, January 17, 2010

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 (right) and partner-in-crime Vic Reeves

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.

Saturday, January 16, 2010

Physical Activity

I am really frustrated with my body right now.

I haven't really done a lot physical since I came down with bronchitis right before Christmas. I'm really at the tail end of it right now, so it's more like I just have a cold. The last big physical thing I did was go to the mall a few weeks ago.

Yesterday, while showering, I totally nicked the back of my left ankle in a couple of spots. It bled for a while and didn't seem to want to stop. I had to tape some gauze on the back of my heel to stop the bleeding after a good ten minutes of applying pressure.

Last night I went to a basketball game with the boyfriend and his dad at my university. It was pretty cool. My school won and all in all it was a pretty great game. We got to sit court-side, which was pretty awesome. The seats weren't the most comfortable, which was not a big deal. I was pretty worried about how close we were because I didn't want to get in the players' way, so I kind of twisted and bent my ankles to keep them off the court. Apparently that was a really stupid idea.

The boyfriend and I went to Discovery World today, which was pretty awesome. If you haven't gone, it's definitely a fun thing to eat up a couple hours of your day. It does involve a fair amount of walking though... which shouldn't have been a problem right?

Apparently I'm wrong about that. I am super wiped out physically right now. We were only in DW for not even three hours and I was wearing sneakers. I started feeling the urge to limp pretty quickly unfortunately, but I wasn't going to let it stop me from enjoying my time.

I feel fatigued, sick to my stomach, and I definitely have rash all over my face. My eyes have also been redder, which worries me since I have had a history of arthritis interacting with my eyes. It always bothers me when I feel like I can't do normal people things without feeling completely and utterly wiped out.

It's not just how I feel physically though. How do I go about turning down something fun because of how I think I might feel? I'm one of those people who likes to try new things all the time and go out and be active. Unfortunately, it seems as though my body doesn't quite share my enthusiasm.

Since I feel down the stairs right before Christmas, my arthritis has gotten worse. I guess that, in the past, I haven't really had to put very many limits on my physical activity. Unfortunately, until (or, the worse option - unless) the disease begins to be more dormant again, it seems like I'm going to have to learn to listen to my body's warning signs just a little better. For now, I have an ankle to ice and keep up.

David Prowse

You may not know it, but you've seen this guy everywhere. From movie theaters to the small screen, he is one of the most important science fiction/fantasy actors of the last forty years. Yet, no one seems to know who he is.


Prowse is one of three actors who brought Darth Vader to life, the other two being of course James Earl Jones (voice) and Sebastian Shaw (unmasked Vader). He was also a bodybuilder and has trained actors Christopher Reeve (Superman) and Cary Elwes (The Princess Bride).

Prowse first suffered symptoms from arthritis at age 13, but they seemingly disappeared while he was bodybuilding. As of 1990, the symptoms returned. By 2001, both his left and right arms became paralyzed and he was diagnosed with septic arthritis. He blames this on a prescription he was given for NSAIDs that he ended up being allergic to. The reaction he had to this medication nearly killed him. He has lost four inches in height because of his arthritis and surgeries resulting from it. Both of his hips have been replaced - and worked on several more times - and one of his ankles is fused.

As if his life wasn't hard enough, Prowse was diagnosed with prostate cancer in March of 2009. As of right now, he seems to be in remission. He works with many arthritis-related organizations and is the vice president of the Physically Handicapped and Able-bodied Association.

For more on David Prowse, see his website.

Friday, January 15, 2010

Tina Wesson

Tina was the winner of Survivor: The Australian Outback in 2001. She never had a vote against her and always tried her hardest to get things done. I was behind Colby Donaldson 100% during the show, but if I had known about her RA, I'd definitely have cheered her on more. As I recall, she never really complained... even though she was diagnosed with Rheumatoid Arthritis in 1994.


She is now a spokesperson for the National Arthritis Foundation and leads a very active life. She has won the Tennessee racquetball championship twice, won a state doubles tennis championship, and came in third place in the state singles tennis championship. She has also run marathons in Ireland and Honolulu as a part of the NAF's Joints in Motion program. Here is an excerpt from an interview with Tina about her battle with arthritis:

"I never wanted to be the poster child for arthritis, because my case is so mild," she says in response to criticism from patients with severe cases who have posted angry messages on the foundation's Web site. Yet, she's speaking out to encourage undiagnosed sufferers to seek medical attention.

For more about her life and what she's done since Survivor, take a journey over to her website.

Thursday, January 14, 2010

Dorothy Hodgkin

Born in Cairo, Dorothy was a prominent British chemist. She advanced X-ray crystallography, protein crystallography, and confirmed the structures of cholesterol (1937), penicillin (1945) and vitamin B-12 (1954). In 1964, she was awarded the Nobel Prize for the latter of these accomplishments. Five years later, she discovered the structure of insulin. No doubt, this woman has touched the lives of thousands through the breakthroughs she made in chemistry.


As a 24-year-old, she complained of persistent pain in her hands. Her parents accompanied her to the doctor's, where she was diagnosed with Rheumatoid Arthritis. However, she never let the disease get in her way. This diagnosis came before she had even discovered the structure of cholesterol. The disease would later cause terrible deformities in both her hands and feet. The following except from her obituary shows Dorothy's determination in the face of disability:

A woman of indomitable spirit, she refused to let even severe arthritis call a halt to her scientific activity. Only last year, although wheelchair-bound, she flew to an international crystallography conference in Peking, to the astonishment of the other delegates who attended it.

Dorothy was also a big supporter of education and very involved with social justice. She traveled from place to place after her discoveries and preached the importance of insulin for those with diabetes.

For more on her life, see this article from the International Union of Crystallography.

Wednesday, January 13, 2010

Erik Lindbergh

He's Charles Lindbergh's grandson and he is very into aviation. He is a flight instructor and commercial pilot as well as being a spokesperson for several organizations like the Arthritis Foundation.


Erik, like Billy Bowden, was diagnosed with Rheumatoid Arthritis at the age of 21. For 15 years, the disease left him virtually crippled. He had to use a cane, otherwise he was virtually unable to walk. After starting on Enbrel, Erik was able to gain back more of his mobility and has become very active as of late.

It is nice to see that Enbrel has helped him. Still, there are a lot of side effects and possible problems, so it is definitely something to talk about thoroughly with your doctor.

Erik's personal website shares more about his life.

Tuesday, January 12, 2010

Billy Bowden

Billy Bowden was a cricket player in New Zealand, who has now had to turn to umpiring because of his Rheumatoid Arthritis. He also had a cameo in Slumdog Millionaire.


As an umpire, he has had to alter certain signals usually given because of his arthritis. The picture above is an example of this. As a young 21-year-old, Bowden began to notice symptoms and subsequently be diagnosed with RA. This left some of his fingers bent.

Here are some interesting words from this courageous man:

Until four years ago, when he became an ambassador for Arthritis New Zealand, he didn't talk about it publicly. "Was it because I was embarrassed, because I was a failure, my faith was tested... because it was why, why me?" he says. "I was healthy, only 21, my life was in front of me, and it was an injustice. I wasn't happy."

Eventually, his strong Baptist upbringing allowed him to reach a more positive conclusion. "Arthritis has been good for me, because I am sitting here now talking to you about something I would probably never have done if I had been healthy and played cricket. God has got a plan for everyone, and that was my plan... my arthritis has changed my life and turned me into someone I might not have been."

__

Ignore the capering: he's clearly a dedicated professional. Nowadays, for example, his ascetic lifestyle means he barely feels any pain from his arthritis. Bowden is virtually teetotal (except for a South African drink called amarula, he prefers a mixture of ginger ale and pineapple juice), he doesn't smoke, he gets at least seven hours' sleep, does 30 minutes of exercise a day and follows a diet planned by Jenny. "Some people think I'm on something, some kind of pill or tablet, but I just tell them that I'm high on life."


How he can make it through the day without taking a lot of medicine is amazing. He has definitely learned to take this debilitating disease and turn it into something that doesn't define him. It is easy to feel like he did as a 21-year-old (seeing as I am one) and think about how unfair it is that I have this disease that can, as we have seen, ruin lives. Sometimes the pain is almost too much to bear. I think that after researching how he has tried to continue living life normally, I have a new hero to look up to.

Here's the interview I retrieved Billy's words from.

Monday, January 11, 2010

Melvin Franklin

You might not know his name, but you've no doubt found yourself jamming along to some of his songs. Melvin was the bass in the hit Motown group The Temptations.


Melvin is the fancy dancer on the left.

I couldn't find a lot about his battle with arthritis, so this paragraph from his wiki page will have to do:

In the late 1960s, Franklin was diagnosed with rheumatoid arthritis, the symptoms of which combated with cortisone so that he could continue performing. The constant use of cortisone left his immune system open to other infections and health problems; as a result Franklin developed diabetes in the early 1980s and later contracted necrotizing fasciitis. In 1978 he was shot in the hand and in the leg while trying to stop a man from stealing his car. On February 17th, 1995, Franklin lapsed into a coma and died six days later on February 23 of a brain seizure, at the age of 52. He is survived by his wife, Kimberly English, and his four children: David Jr., Davette, Felicia, and Niqous. Franklin is entombed in an outdoor crypt at Forest Lawn - Hollywood hill Cemetery.

He was in a wheelchair at one point as well. The article above doesn't seem completely accurate, as most people don't have side effects from cortisone injections. Most likely, the immune system problems related to the arthritis were more of a culprit in Franklin's health than medicines used to treat it. Whatever the case may be, Melvin's privacy about his condition can definitely be understood.

Sunday, January 10, 2010

Gabi Rojas

You might be saying who? Gabi Rojas was featured on So You Think You Can Dance earlier this year.

(For the record, my dream was always to become a ballerina. The chronic nature of my arthritis along with the fact that I'm very uncoordinated has squashed that dream, but I still love to dance)


At the age of 12, Gabi's mother noticed that her index finger was pretty swollen. As more swelling appeared, a doctor's visit and tests revealed that Gabi had Juvenile Rheumatoid Arthritis. Because of the pain, she often used a wheelchair at school and had to stop dancing. Like many diagnosed with JRA, she had many sleepless nights and tried anything she could to ease the pain. Finally, the doctors found the right mix of medicines for her and Gabi was able to begin dancing again.

She wasn't picked to go any farther than her audition on SYTYCD, but that hasn't stopped her dancing career. She has joined a dance company and continues to work on her movement. She is definitely someone to look up to.

“When I dance I can feel my spirit being lifted,” she says. “When I dance I’m reminded about breath because when that point of ultimate exertion arrives I have no choice but to take in more breath to keep going,” she says. “It’s at that moment I remember my breathing hard isn’t just a moment of recovery but a beautiful reminder that I’m alive, I’m present and I’m me.”

More information can be found at Arthritis Today.

Saturday, January 9, 2010

Famous People With Arthritis

I wanted to start featuring stories about famous people with arthritis and how they've dealt with the change in their lives. Normally I will try to focus on people with Still's Disease or the like, but it's always fun to start out with the sports stars.

Sandy Koufax

Sandy Koufax was one of the best pitchers of all time, of all time! But seriously, when you reduce the list to left-handed pitchers, he tops them all. Sadly, his career only lasted six seasons because of his debilitating arthritis.

The end of his career began with his 17th win during the 1964 season. The Dodgers beat the Braves 5-4 in August, thanks to Koufax. Not only did he pitch a complete game, but he scored the run that started the winning rally in the fifth inning. When he tried to avoid a pickoff throw at second base, Koufax jammed his pitching arm. After he won his 19th game, Koufax's pitching arm was so swollen that he couldn't straighten it. Clearly, this wasn't good.

Koufax was diagnosed with traumatic arthritis, which is cause by a repetitive movement. They pulled him from the remaining games in the '64 season so that he could rest what had become a very valuable arm. He returned to the team during spring training in '65. After Koufax pitched a complete game during training, he woke up to a black and swollen elbow. He was told to take it easy, prescribed drugs to help with the swelling and pain, and heavily used buckets of ice as well as different balms. The '66 season would prove to be his last. Sandy Koufax retired at the age of 30.

Most of the information was found at Sports Illustrated.

Friday, January 8, 2010

Not Necessarily Still's Related

People who have compromised immune systems tend to have more than one auto-immune disorder. Allergies are usually a big part of the situation too. This makes sense when you examine what an allergy is.

If you're allergic to something, your body tries to fight it off. A 'normal' person might not have this same reaction to, say, coconuts. So someone with an allergy would then try to avoid coconuts right? Well what happens if you're allergic to cold medicine? I tried not to take any cold medicine, except that I was getting progressively sicker. Finally, I gave in and started taking some Tussin. Unfortunately, the allergic reaction that my body is having seems to be making me sicker than I was in the first place.

For the record, this sucks. I have been sick since December 16th-ish. Thought I was getting better until I left the apartment and came to work today. I've been debating off and on trying to go to the doctor. I think maybe this next week will finally be the deciding factor on that.

Thursday, January 7, 2010

Knee

So I was talking about the pimply nodules that can appear on the knee in a recent post, and it just so happens that I have one right now on my left knee.


It might look like just a pimple, but it is not. It is one of the most painful things about Still's Disease. You want to pop it, because anytime anything touches it, it feels like a knife into your kneecap. This also makes you want to just stay away from it. Unfortunately, these can last for quite a while. While you probably shouldn't pop it, it is best to do so after icing the nodule and using a sterilized needle in addition to your classic pimple-picking skills.

It has snowed all day today here in Southeastern Wisconsin. With all that moisture, one would probably expect to experience a lot of pain. I am achy all over, but that could because of the bronchitis stuff that I am just starting to shake.

Also, if you're looking for a good indicator of the relationship between weather and arthritis in your town, check out Accuweather's arthritis index.

Wednesday, January 6, 2010

Delicious

I wanted to expand more on the dietary stuff surrounding Still's Disease.

The site that I put up a while ago talked about diets for those with chronic pain ailments, including arthritis. The ten things they list are:
  • Thou shalt have no foods but fresh
  • Thou shalt not become a caffeine addict
  • Thou shalt not treat all vegetables equally
  • Remember omega-3s, and consume them liberally
  • Honor thy yeast, and use it sparingly
  • Thou shalt not eat too much dairy
  • Thou shalt not commit carb overload
  • Thou shalt go easy on aspartame
  • Thou shalt not bear a diet with additives
  • Thou shalt not covet thy coworkers junk food
Obviously, this is not an easy diet to maintain, especially if you are a college student. Heck, I'd love to eat Taco Bell and drink Mountain Dew everyday for the rest of my life at this point. I had mentioned in an earlier post that the only "commandment" here that I really follow is the one regarding aspartame, which I'm allergic to. For more on the main ingredient I'm allergic to, go to my other blog.

Eating anti-oxidants are good for the body, so fruits like apples and strawberries as well as green tea are good things to keep around. Vitamin E, calcium, and proteins are also essential to get in your diet.

Tuesday, January 5, 2010

What's the Worst (Continued)

In my post yesterday, I mentioned the problems that can occur in the eyes of people afflicted with Still's Disease. If you were looking for more information on the subject, I found a very interesting and detailed article.

Also, this is a good article on different treatments for Still's Disease, including diet alterations, alternative therapies, and knowing your limits. Some of the information on other pages of this site is not correct, however, so don't believe everything you read.

There were a few conditions that I forgot to list yesterday.

Swollen lymph nodes can be very painful. These nodes are stations in your body that help to clean the lymphatic system. Still's Disease uses this network to travel all throughout the body, so it is very common to have swollen lymph nodes when one is experiencing a flare up. Here is a map of the lymph nodes:

Picture of Superficial Lymph Nodes in the Body
Taken from this site

These areas can become inflamed whenever someone is ill. Most often this occurs when something is wrong in the general vicinity of the node - a sore throat will bring swelling to the cervical nodes, for example. If the nodes stay swollen for too long (2 weeks the site above says), or if they become hard, you should go to the doctor. However, it is normal for someone experiencing a long flare up to have nodes swollen for a longer period of time. You cannot always believe what you are reading regarding your body, because most articles are not arthritis-specific.

Nodules can also form. If you've ever experienced these, you know that they are extremely painful. A nodule is a collection of tissue in a ball- or knob-like form underneath the skin, generally in more bony areas. These can limit the ability to move, especially if grown near a joint. There can be other complications, including ulceration, neuropathy, and infection. While surgery can be performed, it really doesn't do any good since the nodules can just grow back. Steroids can also be used as treatment. This picture is a little hard to see, but you can definitely make out the extra bumps on Angela's hands. I tend to get them in the knee area, where they also can develop on top of the skin. This results in a pimple- and then scab-like substance, which can be picked, though it can be extremely painful.

There is also deformity to worry about. My fingers have already begun to turn and, on occasion, lock up.

My pinky fingers are curved. Both index fingers are, in the top knuckles, turning towards the middle fingers. My fingers are always swollen, but today seems to be a better day than I have had lately.

There are also emotional problems associated with the disease. Concern and fear of how the arthritis is affecting you is always a big problem. It is easy to become angry and frustrated with the fact that there are 'able-bodied' people who can do whatever they want whenever they want and who, very often, take that ability for granted. One can feel utterly helpless. Traditional medicines for Still's Disease can be very dangerous to the rest of your body and there is no cure. Sometimes it seems futile to even try. Sometimes it seems like no one else understands you or cares that you are going through this. There are even times when you think that the people around you don't believe that there is really anything wrong with you and just think you are a lazy bum. Isolation and depression are constant factors as well.

If you have a good support system, these feelings can be lessened, but still pop up from time to time.

Monday, January 4, 2010

What's the Worst That Can Happen?

Being diagnosed with any disease can be scary. There are some that are obviously more notorious for their effects on a person - cancer, HIV/AIDS, etc. I'm not going to try and downplay any of the pain and suffering that people afflicted with those ailments experience.

Still's Disease does not get a lot of attention. It is not a disease that can outright kill you or immediately change your life overnight (in most cases). There are, however, some very scary things associated with it.

Hepatic (or liver) Disease

The liver is an essential part of your body, one you cannot live without in some way. It cleans and filters the toxins out of your body as well as creating proteins and aiding in digestion (creating bile). There are a number of other tasks that this integral organ performs, but they are too many to list here. All in all, it is a fascinating organ.

The term 'liver disease' covers a number of different problems that can affect the liver - hepatitis, cancer, cirrhosis, and more. It is not quite clear what falls under this term when discussing Still's Disease, but medicines taken for pain are also known to cause problems with the liver. It is important to try and take as little (over the counter) medication as possible in order to save your liver from serious problems later on. I will be the first to admit, however, that this is a very hard thing to keep in mind when one is in pain. In the past few months, I have tried to chronicle when I know I am taking too much medication somewhere, just in case. If you are someone with this same problem, it is not a bad idea to follow suit.

Splenomegaly (Spleen Enlargement)

When one looks at the other possible causes, it is easy to see why Still's Disease would be included on that list. While this seems to be a painful problem, treatment involves treating the cause of this symptom and not the symptom itself. If the spleen cannot be saved, it can be removed. However, because of the spleen's function regarding the immune system, this can cause problems down the road.

Pericarditis

The pericardium is the name of the sac that contains the heart. This is mainly exhibited as chest pain, but can also be misdiagnosed as a heart attack. If this is not treated quickly, the problem can lead to congestive heart failure. Generally, steroids and antibiotics are used to treat this malady, but it can also require other medicines and surgery.

Pleuritis

The pleural cavity is the one surrounding the lungs. If you've ever had the feeling that you breathed in too deep and caused pain in your chest, this could be the culprit. Coughing, shortness of breath, and rapid breathing (as well as turning a nice shade of blue) are the main symptoms of this problem. Normally, over the counter medicines are used as treatment, but doctors can also remove any fluid on the lungs and give a patient steroids if they need to. If the condition isn't treated, other respiratory problems can occur. And I wonder why I have bronchitis...

Other problems:
  • The swelling of the kidneys and other related problems
  • Endocarditis, or the inflammation of the inner layer of the heart
  • Atherosclerosis (more prone)
  • Increased tear production (generally happens one eye at a time)
  • Inflammation of the outer white part of the eye (scleritis) can cause blindness; so can uveitis, the inflammation of the middle layers of the eye (I had this as a youngster, misdiagnosed as pink eye because the rash was present on my eyeball)
  • Anemia. Yes, we've talked about it before and it doesn't seem to be a huge problem. However, behavioral problems in young people can be explained with this disease. It can also affect the heart and tolerance to cold. Living in Wisconsin with anemia sucks.
  • Damage to the nerves and nervous system (peripheral neuropathy and mononeuritis multiplex)
  • Atlantoaxial subluxation, or basically a fracture or other problem involving the first few vertebrae in the neck
  • The above two problems can also lead to quadriplegia
  • Osteoporosis (more prone)
  • Lymphoma (more prone)
  • And the piece de resistance, swelling of the brain. This can lead to dementia as well as, oh, death. Yeah, nice right?
So now you know a little more about the problems facing people with Still's Disease. There isn't just a fear of ending up in a wheelchair or being unable to move one's fingers normally. As one can imagine, staring all these issues in the face everyday is not pretty or fun. Even if someone can come to terms with the fact that these things are a possibility, trying to explain all of the above to people you care about can be pretty scary.