Rheumy Appointment #1

Posted on by Grayson
So I had my first rheumy appointment in forever today. Here’s the short synopsis of what went down:
  • Got there perfectly on time and the nurse was ready to take me back before I was even fully checked in
  • Found out I lost like two pounds, haha
  • Kicked a dude out of the examination room we were going into
  • Went over medical history with doctor’s assistant and then the doctor, which took forever
  • Changed into a medical gown for the first time since I was like 7
  • Physical exam – not invasive at all, DR was really nice
  • Pee test!
  • Blood drawing for complete lab work – they took TEN vials
  • Cranberry juice!
  • Hospital pants and robe
  • X-rays – 3 on each hand and foot, and two on each knee
All in all it was pretty exciting. Everyone at the hospital/Medical College was really, really nice. I even took this awesome picture for y’all to see:
The pants were entirely too big, haha, but whatevs – they were comfy.
I was pretty woozy after the blood business. I haven’t really been good with needles since I had to be around them all the time when I was little and my disease was still a mystery to us. I’d also like to point out that I have one heck of a migraine right now. Awesomeeee.
My follow-up appointment is on April 8th.

FML

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Sunday, I had a pretty swollen ankle – to the point that I actually broke out the ACE bandage/wrap thing. Monday, the pain had traveled into my knee and was pretty bad. Today, though, I almost couldn’t take a shower because I couldn’t lift my knee high enough to clear the tub. Unfortunately, my ankle is hurting now too. There’s just no good way to deal with this. I’ve taken two Aleve and two ibuprofen and been using my Liquid Freeze.

I need better painkillers or possibly a new left leg… though I’m sure the latter would require the former.
Also, I’m pretty exhausted/tired.
Blech.

Doctors and Me

Posted on by Grayson

I don’t think it’s any secret that I’m not the biggest fan of doctors. If you’ve read some of my past posts, you know that I was misdiagnosed at the age of six with leukemia and told that I either needed to start chemo right away or I would be dead within six weeks. My mom says that’s why it’s called practice – sometimes doctors don’t know what they’re doing. For a good two to three years, I was getting blood drawn and other tests done all the time in an effort to figure out what was wrong with me. All in all, I’m pretty doctored out.

Wednesday, I had my first real doctor’s appointment in like forever. I really only went to get a referral, but the doctor only touched me twice – to look at both of my knees. There was no blood drawn, no peeing in a cup – nothing. I obviously don’t remember going to the doctor when there wasn’t anything wrong with me, but it just seemed really odd.
I have my first rheumatologist appointment in forever on March 9th at the medical college. I’m really hoping that it goes well. I’m sure that it will, but I guess I’m just nervous. No doubt you’ll hear all about it.
I have so many things that I feel like I need to talk to the rheumy about and I just have no clue where to start.
As a side note – there are still two celebrities to cover with arthritis, but I probably won’t be posting on that subject until mid-March. I’ve got a string of projects due for school, including my capstone project that I have to focus a little more on here. Also, since I’m already going off on tangents, I got into the University of Wisconsin’s graduate school in Madison. I start in the fall and I’m pretty ecstatic about it.
Oh and your smile-bringer today? Just a little self-promotion.

Oi!

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One of the hardest things to deal with when you have arthritis, especially at a younger age, is the opinion of the people around you. It can be really difficult on days where an ACE wrap around your elbow or another visible spot could help with the pain. You get odd questions – “Oh.my.gosh, what happened to your arm? Are you okay?” It’s hard to explain why the wrap may be there one day and not the next.

Taking pills and other medicines can also be a problem. I take OTC pain meds, which are not as noticeable but can be if you end up having to take them a lot. It can also be embarrassing when you use ointments like Bengay or Icy Hot. Going to class smelling like a poor person’s version of a York Peppermint Patty always gets exciting.
And then there’s the fatigue. You can’t do a whole lot to combat this except to try and push through it. Unfortunately, that doesn’t always work. Others probably shouldn’t follow my example, but I tend to drink a lot of high caffeine beverages as a result – coffee, Dr. Pepper, Mountain Dew, etc. I probably crash pretty hard because of that when I do crash, but for me right now there seems to be no other alternative.
Working out can give normal people more energy, but it seems as though the opposite is true for many with arthritis. When I work out, I feel great right after (unless I manage to hurt myself doing, which as a clumsy person is very possible). The next day and the day after though, I’m completely wiped out. This doesn’t even take into account the pain that happens while working out. The best types of workouts for people with arthritis tend to be those that improve range of motion (dance), strengthening (weight training), and aerobics (bike riding). If you have bad knees, however, dancing and bike riding don’t help a ton. One of the hard things about working out is knowing how far to push yourself also. “No pain, no gain” can only go so far before there’s negative gain.
So why this focus right now? I should be getting ready to go play with a bunch of awesome second-graders a few blocks away. Instead, I’m sitting in my apartment with ice on my knees, an ACE wrap on my elbow, and Liquid Freeze on my shoulder. It’s hard to know when to push yourself and when to sit out unless things get really painful/bad. Usually, I can tell when things are going to end up affecting me this way later. Unfortunately for me, this is how I woke up today.
Even when you try to plan for everything, it’s hard to remember that arthritis can be such a random disease. Planning won’t help with everything.

Oh.My.Gosh.Really?

Posted on by Grayson
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

Posted on by Grayson

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

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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

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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

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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

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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.