10-12-10

World Arthritis Day was yesterday, October 12.  I was originally planning on writing an entry devoted to arthritis awareness, and then posting a link to it on my Facebook so my friends could learn about arthritis, but I changed my mind.

I have had a lot more problems with nerves in my right forearm.  I’ve had to miss a lot of school and actually stayed at my parent’s house for a while.  I went to my rheumatologist who then decided it must be my swollen wrist compacting nerves, so she prescribed me predinsone (I’ve been wondering when I’d get my turn at this drug…).  My friends had been concerned, and they knew I was getting pretty bummed about the situation.  More crap to deal with, more missed classses, yadda yadda.  They were very supportive, and while talking with them I realized their knowledge of RA was beyond impressive.

When I was first having problems, they would ask, “Do you think it’s broken?  Or is it the RA?”  With these two comments, I realized this particular friend knows the symptoms of RA well enough to understand I might be flaring, and they said “RA” instead of “arthritis,” which can have different connotations to people without RA.

Another friend asked me about how it would impact school.  They realized the effects the disease has on me.

Other friends knew I needed cheering up.  One constantly reassured me, and told me that they didn’t hope everything would be okay, but that everything WOULD be okay.  Another suggested I go play in the rain.  The rain?????  I’ve hated that junk for almost five years now.  It always makes me feel louzy. That’s how I usually feel about rain.  But this time I trusted my friend, slipped my rainboots on, and went splashing through puddles for a good twenty minutes.  And it was FUN!

While at the doctor’s, I was texting my friends to let them know things as I found them out.  I thought it was so sweet that they all wanted to hear from me, but I was really taken aback when I found out that these friends were texting each other to make sure they all heard.  Wow!

Arthritis awareness among my friends is completely unnecessary.  It didn’t happen overnight, but my friends now have a good understanding of RA and what I need from them when I’m flaring.  I’m incredibly lucky to have such great people in my life who care about me enough to learn about this disease.

I know many of you feel like no one understands what you’re going through, and that you can only get support from others with RA.  But I think this is proof that this is not the case.  It’s gonna take some time, and you’re going to have to forgive them if they do not understand sometimes or if they get something wrong.  But good friends care about each other, and even when they get things wrong they’re still trying, so don’t give up on them.  With a little work on both ends, you can have a loving support group, too.  Awareness should start with those closest to you.

Magnets: Myth or Medicine?

This past weekend was the annual arts and crafts fair in Hot Springs.  I hadn’t been able to go for the past two years for various reasons, so I was extremely excited to go with my Mom on Friday.  We didn’t have long (it seems like we always get there late) but we managed to find a few fun things.  One thing I didn’t think I would see was a huge yellow sign reading: Magnetic Therapy!  For back pain, migranes, carpal tunnel syndrome, arthritis, rheumatoid arthritis, fibromyalgia, restlessness, sinus problems…

Wait a minute…did that sign say rheumatoid arthritis?

Of course that caught my eye.  I had heard of magnetic therapy and was open to learning more about it and possibly trying it, if only for the sake of crossing another remedy off the list of possibilities.  The guy at the booth was wearing a magnet necklace, bracelet, and he said (although I didn’t see for myself) that he was wearing one on each ankle as well.  He handed my mom and I a pamphlet.  According to the pamphlet, magnetic therapy “works with the iron found in the hemoglobin of our blood.  Research tells us it acts as a catalyst to improve chemical reactions occurring in our body.  It aids in increased oxygen carrying capacity, blood circulation, and decreasing inflammation.”  It does go on to say that magnetic therapy itself in not a cure and should never replace treatment from qualified medical professionals.

I ended up getting a double stranded bracelet for my right wrist (my worst joint, generally, and also the first joint that was affected by RA).  The particular bracelet I got has  triple strength magnets, according to the man at the booth.  How am I supposed to know it’s anymore powerful than the others?  Well, I don’t.  So he very well could have been lying, but I was okay with taking that chance.

I was instructed to only take the bracelet off when showering or working on the computer, but at all other times to wear it, even when going to bed.  He told me that some people see a change in 24-72 hours, but to give it at least a week before writing it off completely.  He also said that if the bracelet was of no benefit to me that I could mail it back and receive a full refund.

When I first put it on it made my wrist feel funny. It felt like when I was a kid and I’d wear a bracelet while I rode my bike.  The vibrations from the handlebars made my arms and therefore the bracelet vibrate too.  It wasn’t painful at all, but maybe a little uncomfortable.  It didn’t last very long, though, and even when I take the bracelet off to shower that feeling doesn’t come back.

It is very difficult to get off, though.

It’s been a little over 48 hours so far and I’m not sure that I’ve seen any change so far.  I’m not giving up yet, though.  I’m committed to see this bracelet experiment through for at least a week, and I might go as far as to try two weeks.  I guess that’s because I really want it to work.  And if it does, I’m going to purchase a necklace, anklets, and another bracelet.  Lol!  I’m being sure not to get my hopes up, as I’ve had way too many let downs in the RA department.

But, as I said earlier, if anything this will be another RA remedy to cross off my list of things to try.  I’ll update in a week as to how the magnets have performed, and I’ll let you know if you should buy one or not.  🙂

Surviving School

Hey readers!  I don’t have a lot of time to devote to writing this week, but I did want to answer this question really quick.  If any readers have suggestions of their own please feel free to comment on this post!

“Thanks for writing. I am hoping that you can give my daughter some hope. Although the pain started two years ago, she finally got diagnosised a month ago. She is a junior in HS , besides fighting for a 504 and elevator pass, any suggestions for making HS easier?”

First thing’s first, get a note from your rheumatologist and give it to the secretary of your high school (if you haven’t done this already).  That way when you have to miss several days due to RA flare ups, you’ll be excused.  Since I had that note, everytime I missed school I had my mom write me a note to take to class the next day.  That suficed and excused my absense since we already had a doctor’s note.

At my high school, we did a lot of walking in between classes outside.  Walking on the grass as opposed to the cement sidewalks was easier on my feet.  This is very beneficial to me now that I’m in college, too.  Generally, walking on the grass instead of staying on the side walk gets me to class faster, saving my knees a few steps.

Good shoes are also a must if you walk around a lot.  Shoes like converse are stylish (I have so many pairs!) but they do nothing to help your feet out.  If you’re a fasionista like I am, look into finding some comfy inserts to those uncomfortable shoes.

If carrying books is a problem, ask to keep each book in the classroom and for a second set at home.  If not enough books are available, ask if it would be okay to share books with friends in class so that way you can keep your set at home for homework.

Communicate with your teachers about how you are doing lately.  This doesn’t have to be during class.  I didn’t want any of my classes to know about my RA, is usually my parents or I would email my teachers to let them know if I was having a severe flare up and that I would be gone for X amount of time.  By doing this, my parents could pick up my homework and I wouldn’t fall behind in class (In fact, even though I missed a ton of school, I graduated with a 4.2 gpa and received an honors diploma).  In order to help teachers understand RA, you can show them this.

Look into online classes.  This is more of a college tip rather than high school, but if you flare constantly, it’s a good alternative to live classrooms.  They’re usually really, REALLY easy too.  And who doesn’t love a gpa booster?

If morning stiffness is a problem (like it still is for me) see about adjusting your class schedule an hour or so later.

What If

It’s a question I ask myself often.  And I’m sure you do, too.  Everyone does at some point.

Life before RA.  It’s a little harder for me to remember since I’ve had it so long now and because I was so young when I was diagnosed.   But I still have some memories of being able to run and jump and of having bounds and bounds of energy.  I remember playing the drums and it not hurting.

That’s really the hardest for thing for me, in all honesty.  I know I would’ve pursued drums further without RA.  When I found out I had it (at 15), being the best I could be at my instrument dropped from my mind.  Being the best turned into make it through my high school’s band program.  Learn enough to be the best at my school so I could be drum line captain.  And if I can make it to that, suffer just enough to achieve that goal, I’d hang up my sticks.

And so I did.  Now that I’m in college and no longer a part of band, it really sucks.  It didn’t at first, for some reason.  I enjoyed listening to the Razorback Marching Band from my dorm room at the University of Arkansas.  I’d try to sit as close as I could to the band at games.  But I guess it wasn’t hard because it was my freshman year.  The memories of high school were still fresh.

I’m a junior now, and I haven’t gone to a football game in a long time.  I could hear Henderson’s drumline play at a game one night from my apartment.  The cadence they were playing was very similar to one from my high school, and after hearing it a couple times I could play the song by tapping my feet.

It’s enough to make one really, REALLY sad if they think about it too long.  But we can’t. Fact of that matter is, we have this disease, and in some strange way it plays a part in God’s plan for us.

Without RA, I probably wouldn’t be a writer.  Looking around as I type this, I have almost 25 articles hanging up on my apartment walls from working on my school’s newspaper.  I’m an editor this year, and over the summer I was an editor of my school’s magazine as well.  We’re taking several trips for media conferences, we have contests we can enter, and I’ve made so many incredibly gifted, awesome friends.  So many doors are open to me now that I’m pursuing a career in writing, and its all so exciting to me.

I’ll never know what my life could have been like.  But, at the end of the day, I’m not sure that I would want to.

The Great Debate

To exercise, or not to exercise?  That is the question, fellow RA’ers.

The problem is, when you don’t feel good, there is no way in heck you’re gonna do anything active.  And when people suggest to us that we would feel better if only we would exercise, we get offended.  “Do you see my joints?  Do you know how much they hurt?  I’m not hoping in a pool anytime soon, no matter how much you promise me it’ll help.”  That’s usually our take on exercise.

I’ve been pretty closed-minded about exercise.  I put limitations on myself that I didn’t even know were true or not.  “Swim for an hour?  I’d probably pass out of exhaustion after ten minutes, maybe.  Hike up a mountain?  You know how much that’d kill my knees?  I can’t do that.”

This is a picture I took at Yellowstone less than a year after I was diagnosed. We had to hike to see it. If I had decided the hike was too much for my RA, I never would have seen this magnificent view!

It is important for us to listen to our bodies when we hurt.  If we are performing an activity and something begins to hurt, it’s time to stop.  But we can’t assume things are going to be bothersome.  It’s when we put more limitations on ourselves than necessary that we start to let the RA control us.

Since the beginning of the new semester, I’ve been trying to become more active.  And it’s easier  to make myself follow through because I have an active roommate this year.  Every opportunity I had to go swimming, I went.  And it felt really great to move around freely without feeling any pain or stiffness.

Yesterday we tried to go swimming again, but with the rainy season upon us in Arkansas, it was way to cold to feel comfortable swimming at all.  Instead, I remembered a recent visit to my new (and improved) rheumatologist.  She explained the importance of exercising, and that her patients that exercise and much better in the long run than her patients that do not.  She said it was the difference in whether or not those patients could walk or not.  My rheumatologist told me not to run, EVER, but to swim and to ride a bike.

As a kid, riding my bike was my absolute FAVORITE activity.  I took pride in my bicycle.  Every so often I would even clean it (I thought I was so cool!). The thought of starting the sport again was exciting to me.

When the pool was too cold to swim in, my roommate and I ventured over to our university’s recreational center.  We found the stationary bikes and plopped down.  I started limiting myself immediately, without evening thinking about it.  “I’ll probably have to take breaks pretty frequently,” I said.  “I’ll probably only go two minutes at first.”

I started without any resistance and found it boring.  The machine was kind of complicated so it took me a while to figure out how to change the resistance, but once I did I set it to five instead of one.  It was just challenging enough for me.  I watched the clock slowly tick away on the machine, and I didn’t feel any pain coming.  Next thing I knew I had biked three miles!  My muscles were tight, but there was no pain whatsoever.

I was AMAZED.

Apparently I didn’t exercise long enough, because my muscles aren’t even sore today (although my Dad said it could creep up on me late tonight or tomorrow, so I’m skipping the bike today until I figure out if it will or not).  I haven’t felt any bike-related pain.  I remember my elbows hurting during dinner last night, along with a few other random joints, but nothing that could have been derived from the workout.

I’m not saying exercise is for everyone, and I can’t promise that you’ll feel as great after the workout as I do.  If you have any swelling I would definitely talk to a rheumatologist before trying any activity involving that joint.  But if you haven’t tried exercise, don’t write it off.  It’s worth the try.  That way if it doesn’t work, you can cross it off the list of things to try.  But if it DOES work…wouldn’t you want to know?

I’ve been swimming as often as I can since the beginning of school, so about three weeks.  It may take you that long or longer to see any benefits, but if exercising doesn’t irritate your joints, keep at it!

So I guess to answer the “Great Debate” – it will help some, it won’t help others.  But the main thing to remember in this argument is that you never know until you try.

Just a Thought…

I’ve been considering sharing this story with all of you for a while.  I’ve finally decided that, even though it’s a little more on the personal side, this might help some of you.  And that’s the most important thing.  So here goes:

If you flip back a couple posts in my blog you’ll see this picture of my swollen and very painful left hand.  This is what both of my hands and feet looked like last March-April, but my whole body was in pain.  It was by far the worst and longest flare up I had ever had, and it had been building since as far back as November ’09.

My RA is not the constant flare kind (thank goodness…), and I had been doing fairly well before.  I even went into a little remission for a while and quit taking the Methotrexate (chemotherapy).  I think quitting this med is what brought the flare up on, so I know now that I should never miss a dose of mtx, no matter how much I just wanna chunk it out the window.

It was hard to do anything.  Hard to sit up in bed, walk, eat, even sleep.  Here’s where I had a thought: it’s important for us to move around just enough to keep from getting too stiff, which can cause more pain.  When you’re in that much pain, however, moving around at all is almost impossible.  It is an inescapable cycle.

Because I was diagnosed at 15, the only rheumatologist I’ve ever seen specializes in JRA.  When my mom called her office asking if there was anything else they could give me, they offered me trammadol, a slightly more effective NSAID than naproxen.  I saw no difference.  My mom called again, but they refused to give me anything stronger.

I was unable to attend school, scared to death I would fail the entire semester and lose my scholarship.  I remember crying to my mom, so desperate for help from my doctor, but they couldn’t give me anything else for me to just try.

During this time I went to see my general practitioner.  It’s been so long ago that I don’t even remember why I went to see them.  I try to keep them as updated on my RA as possible, so I explained what had been going on and showed them my swollen and extremely tender joints.  My mom and I asked about prednisone, curious as to why my rheumatologist wouldn’t let me try it so maybe I could go back to school.  After discussing different options, they agreed to give me a limited supply of darvocet, a much stronger pain medication, but told me to only take it when I absolutely needed it, otherwise I would build up an immunity to it.

I realize my rheumatologist did not want to give me darvocet because it is so strong and it should not replace the daily NSAID.  My mom called them before I took the darvocet, and they were completely against.  I believe they told my mother “We don’t give our kids that.”

I never intended on staying on the darvocet daily, you simply can’t.  But taking the darvocet made the pain so much more bearable.  I was able to wash my hair again, walk around the house, and hold a fork for longer than sixty seconds.  I’ll be eternally grateful to my doctor for helping me keep my scholarship.

I only needed that darvocet for three days before the flare was gone.  I went from absolute hell to feeling better than I had in months in DAYS.  Can this really be coincidence?  Or could controlling the pain long enough for me to move around and relieve the stiffness do the trick?

I know my rheumatologist would never have given me a stronger pain killer, so I can’t help but wonder what would have happened if my general practitioner didn’t give it to me.  How long would I have flared?  Would it have progressed further?  Would I still be in a flare, like so many of you are?

I don’t know if there is something to my discovery or not, but I feel that it is worth looking into if you are in a similar position that I was in a few months ago.  Ask your rheumatologist or your general practitioner for a couple weeks worth of darvocet or something like it.  Call me crazy, but it may be worth trying.  Even if it doesn’t work, at least then you’ll know.

I’m not a doctor, but I know how desperate some of you are to feel even the tiniest bit better.  I truly hope this can work for someone.

Stay healthy, everyone.

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An Experiment For More Effective Communication

It’s  no secret that a lot of us RA’ers have a hard to opening up to new people about our disease.  In general, most people don’t understand, and it’d difficult for them to understand the severity of RA.  Now, now, we mustn’t blame them, after all communication is a two way street. (I’m taking Interpersonal Communications this summer, and I’m really enjoying the class.  Can you tell?)  Let us analyze the situation for a moment.  Where does it go wrong?

Remember back before you were diagnosed, you probably didn’t know much about RA either.  Back then, if you heard the words rheumatoid arthritis, you probably associated it in you mind with those extra strength Aleve commercials or something (I know I did).  Rheumatoid arthritis is just like any other form of arthritis.  Then BANG!, you got it, and you didn’t know what hit you.

So I imagine most people think of something similar to those Aleve commercials when they hear me say I have RA.  We can’t expect them to automatically know what RA is.  When you tell them you have rheumatoid arthritis, the word “arthritis” will trigger several thoughts, probably something along the lines of an elderly woman outside in her garden wringing her hands,  popping a pill, and then giving a big smile before getting back to potting her petunias.  Of course, this is wrong, but this is what’s associated with the word “arthritis.”

Now that we’ve looked at the situation, let’s fix it.  What if we explained our disease backwards?  In other words, instead of telling them what we have and what it does, start with what it does.

Imagine it from their perspective: “I have a chronic immune disease that can cause me a lot of debilitating pain and fatigue.  It can be completely unpredictable, but that keeps life interesting, huh?  I take some pretty heavy duty meds for it too that also has some nasty side effects.  It all hinders what I can do on a daily basis, but that’s life with rheumatoid arthritis.”

What do you think?  I haven’t had the opportunity to test my theory out yet, but maybe this simple tweak in communication might help us change the way people view our disease.  Gimme some feedback on this one, especially if you test it out yourselves!  😀

Stay healthy!

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