Getting On My Nerves

Instead of sharing some of my experiences today, I’m asking you about yours.

In the four, almost five years I’ve had RA, it’s never effected any nerves.  A couple nights ago I was typing a lot, and my right wrist began to swell some.  I kept typing, and eventually I started to notice that the skin around my wrist and ulna bone was extremely sensitive.  I’m not quite sure how to describe it, really, because it wasn’t exactly painful but it wasn’t pleasant either.  It almost felt like a tingling sensation, but not.

My mom thought it was carpal tunnel at first, but after googling it I found out that carparl tunnel effects your palm and thumb more than anything.  Then I started to wonder if the swelling in my wrist had pinched a nerve.

It seems to be better today, although my wrist is still a little swollen and at times the sensation comes back.

Do any of you experience something similar?

Will You Waste Your Rheumatoid Arthritis?

“Be kinder than necessary, for everyone you meet is fighting some kind of battle.” – Anonymous.

Today I flitted through some old posts on the blog The Sullivan Four.  It a family’s “story of God’s faithfulness as [they] traveled the road of cancer and the loss of a child,” Hannah, who was a former classmate of mine.  Hannah’s grace and the grace of her family was and continues to be an inspiration to thousands.  I wanted to share something Jill Sullivan, Hannah’s mom, had found and posted to the blog.  While it is written about cancer, Jill had stated “I actually think there are a lot of words that could be substituted for the word ‘cancer’…These ten points could apply to many storms we face in life.”

I’m sure you understand what I want you to replace “cancer” with.  8 out of 10 of these points directly apply to our lives.

“John Piper writes about life after his diagnosis of prostate cancer. The list below and the full article (found at desiringGod.org) suggest purpose for any Christian in the midst of cancer. It is a time not for defeat and despair but rather it is a powerful experience to reflect on our purposes in life. This means that Christians are to seek to glorify God even when circumstances are most difficult.

1. You will waste your cancer if you do not believe it is designed for you by God.

2. You will waste your cancer if you believe it is a curse and not a gift.

3. You will waste your cancer if you seek comfort from your odds rather than from God.

4. You will waste your cancer if you refuse to think about death.

5. You will waste your cancer if you think that “beating” cancer means staying alive rather than cherishing Christ.

6. You will waste your cancer if you spend too much time reading about cancer and not enough time reading about God.

7. You will waste your cancer if you let it drive you into solitude instead of deepening your relationships with manifest affection.

8. You will waste your cancer if you grieve as those who have no hope.

9. You will waste your cancer if you treat sin as casually as before.

10. You will waste your cancer if you fail to use it as a means of witness to the truth and glory of Christ.”

I don’t like having RA, and I never will.  However, I strongly believe this disease has changed me for the better.  I’m not sure of who I would be if I had never been diagnosed with RA, but I’m certain I would not have as close of a relationship with God nor would I understand the importance of being kind to others (whether their storm is invisible, like mine, or not).

We can let this disease get us down, we can let it defeat us, we can wallow in the “what ifs” and “what life used to be’s”  or we can realize that we’ve been given an opportunity to better ourselves and others through our storm, as Hannah Sullivan did.

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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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10 Fun Summer Activities for RA’ers

RA'ers can fly kites too!

Summer is here, summer is here!! Okay, so it may not be technically summer just yet, but that summer sun is definitely shining this week.

….Why is no one else excited?  I know I am.

Yes, some of the fun things we used to be able to do in the summer time are a little out of Rheumatoid Arthritis patients’ reach.  This is no cause for sadness, because even though we cannot do some beloved hobbies, we have the chance to explore and find new things to love.  This my sound like quite the challenge, considering any activity is going to require joint usage, but with a little alteration and a lot of creativity,  you’re guaranteed to have some fun in the sun this summer.

For today’s post, I’m counting down the top ten summer activities for RA’ers.

10. Sun Bathing – Read a book, play chess, take a nap.  Whatever you do, do it in the sun!  Several studies suggest that Vitamin D deficiency is linked to the diagnosis and aggravation of Rheumatoid Arthritis, and sunlight is an important source of vitamin D.  Sunlight exposure also releases endorphins.  Just by sitting in the sun, you can cure your case of the blues, which can be so common among RA patients.  Getting quality sun time also improves your sleep patterns, which can also be thrown off by RA.

9. Take a Drive – Explore your city or a surrounding city with a friend.  Roll the windows down and enjoy the fresh air and warm breezes.  Create a soundtrack for your adventure (classics like Steppenwolf’s “Magic Carpet Ride” are always fun).  I find aimless driving to be relaxing, and it can be fun bonding time with friends and family.  And it is most certainly better than sitting in the house.

8. Fly a Kite – Remember those fun activities we did as kids?  Kite flying, tossing a Frisbee, chalking, blowing bubbles….who says we can’t still play with these toys?  I know what you’re thinking, all these activities sound like they involve a lot of movement and a lot of energy.  But with a few adjustments (sitting while playing, limiting wrist movements, etc.) we can have some childish fun as well.  I recently bought a kite from this online store, and I’m very excited about taking it out for a spin very soon.  The great thing about this kite is that it is designed so that five year olds can fly it.  It’s super light weight and is meant to catch even the slightest of breezes.  And once its in the air, you can sit back, relax, and have fun guiding it through the air.

7. Stargazing – Warm summer nights means one of my favorite past times, stargazing.  With a star map (like this one you can download onto your iPhone), you can spend the night outside locating your favorite planets, stars, and constellations.  Websites update daily with stargazing tips and certain stars to look for.  For example, StarDate Online says for 4-22: “The Moon slides between the planets Mars and Saturn the next few nights. Tonight [April , Mars is to the upper right of the Moon at nightfall. It looks like a bright orange star. Golden Saturn is a good bit to the lower left of the Moon.”

6. Picnics – Gather up some close friends and have them each bring  a different food item or drink to a nearby lake or park.  Take a blanket and eat a bite of lunch in the grass while you catch up with your buds.  Themed picnics are even more fun!

5. Photography – It’s hard for us artistic RA’ers to have creative outlets when our joints are swollen and tender.  I’ve gone from playing the drums to scrapbooking to painting and drawing, and now even that can be difficult.  Which is why I’m thinking of taking photography back up.  I was really into photography in my early years of high school, and clicking a button seems to be much easier than drawing for a few hours.  And all the pretty summer flowers make for great models.

4. Create a Terrarium – Bending over and playing in the dirt tending to baby plants’ needs can be hard on RA patients’ backs and hands, but there’s no need to give up this hobby entirely. Terrarium’s are fun, indoor gardens that require little upkeep, but are tons of fun to create.  And because it’s gardening on a smaller level, it’s easier on your hands, and you can create your terrarium at a table, eliminating stress on your back.  You can learn how to make a terrarium here.

3. Geocaching – Geocaching is a modernized treasure hunt on a global scale. Players use a GPSr’s to locate geocaches, and then connect online to share their stories and pictures of their adventures. It’s a great new game that is becoming more and more popular all the time.  And geocaches can be found almost anywhere.  About a year ago my boyfriend and I found one next to a local Chinese restaurant.  You can also select a geocache based on difficultly, i.e. “a difficult hike or an easy adventure,”  according to the sport’s homepage Goecaching.com, where you can find out more about this fun activity.

2. Baseball Games – “Take me out to the ball game!”  Even if you don’t like baseball, when you’re watching a game in person it’s hard not to get into the game, especially when you bring all your friends along to heckle the opposing team and pig out on hot dogs and nachos.  America’s favorite past time is a summer must, and all that’s required of you is to sit back, relax, cheer along and eat some food.  Be sure to take a seat cushion or a pillow if you have back problems, and every few innings stand up and get a good stretch in to prevent stiffness.

1. Swimming – There are very few people who do not enjoy swimming, and it’s the thing to do in the summer time.  This is good news for us, considering swimming is an RA-friendly exercise and is recommended by many rheumatologists.  Even if you don’t have the enjoy to swim from one side of the lake to the other, floating and general movements in the water can be great for your joints, and the cool water is refreshing on hot summer days.

Remember, most activities after performed for long periods of time have the potential of causing  tenderness and pain.  Please keep in mind that these activities should be performed in moderation, especially when these activities require joints that are already tender and/or painful.  If a doctor recommends discontinuation of an activity or limited use of a joint, it is probably in your best interest to heed their warnings.

Stay healthy!

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Battle Scars

All of us RA’ers know that arthritis can sometimes leave a mark, whether it be inflamed joints, disfigurements, or nodules.  This sort of “mark” can be recognized by the Non-Ra community as arthritis (even though some, if not most, will not understand it in its entirety).

But there are other sorts of battle scars, if you will, that RA patients may bare.  One of mine, for example, are bruises on my legs (see picture on right).  This is an after product of Enbrel, my biologic of choice, taken by injection twice a week.   In this picture, you can see the bruises of not only this week’s Enbrel injections, but last week’s as well.  These bruises have always been embarrassing to me.  For a long time now, I’ve disliked going swimming without a pair of shorts or a long T-shirt on to cover my battle scars, I usually don’t wear shorts (and even when I do they are almost to my knees), and I don’t wear dresses as often as I would like (I absolutely adore summer dresses).

Today was the first day that I wore shorts that showed my bruises in public.  I’ve been on Enbrel for almost four years, so this was a pretty big deal.  Even though I only went to two classes and the office of my apartment building, I was pretty nervous about it.  I pictured one of my classmates asking me about them, and wondering what I’d say back.  “Oh, I have Rheumatoid Arthritis.”  If I were them, I’d think I was full of you know what.  How does arthritis justify bruises?

But I don’t think anyone even noticed.  And even if they did…why do I care so much?  It’s time for me to put this silly fear behind me.  Sometime this week, I’m going to wear a summer dress in public.  😀

Yes, I have Rheumatoid Arthritis, but RA should never define us.  RA can put a limit on what we do, especially if we’re in the middle of a flare or if you avoid certain activities like I do to try to prevent a flare.  Therefore its silly to limit ourselves more than what is necessary, and I’m going to work very hard to make sure I never avoid something I want to do and that I’m fully capable of doing just because of embarrassment.

Lesson learned!  Life’s too short for such things.

Stay healthy!

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Excuses, Excuses

What’s my excuse for not posting in so long?  Ladies and gentleman, I give you exhibit A:

My apologizes for the low quality, but it was rather difficult to take this pic.  It’s actually the only one that didn’t turn out blurry, and I didn’t even try to get a picture of my right hand, I already knew that’d be impossible.  But, good news!  My hands and feet are doing much better, and I’ve been working on something special for my next post that I am very excited about.

I hope you all are enjoying the pretty weather as much as I am!  By the way, does anyone know where you can buy a kite?  😀

Stay healthy!

Cari

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