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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Stress and Your Bones

Finals are approaching a little too fast for this scared little college girl.  And even though my joints have been doing much better these past couple of weeks, I’ve notice some swelling in my wrist and a couple fingers, and that awful throbbing pain that likes to surprise my system at the most random of times has made an appearance.  Could my stress and arthritis pain be linked?  I’ve done a little research, and according to the web, it can.

I found a great article on About.com on stress and rheumatoid arthritis written by a couple who both have the disease, and together have over 57 years combined experience living with arthritis.  Here’s what they said:

“Patients often report that episodes of stress or trauma preceded the onset of their rheumatoid arthritis. While stress is nearly impossible to measure, some researchers have suggested that stressful life events, such as divorce, job loss, death of a loved one or accidents, are more common in people with rheumatoid arthritis during the six-month period before disease onset compared with the general population.”

Why is this so?  An article on Every Day Health clears this mystery up for us as well:

“Research shows that stress may play a role in the actual inflammation that causes pain. Inflammation in RA is partly caused by molecules called cytokines. While cytokines can be released for a variety of reasons, stress also releases them. If you’re stressed and are releasing more cytokines, you probably will develop more inflammation. This may result in more pain.”

It seems RA patients get the short end of the stick when it comes to stress.  Because ordinary tasks can be difficult for us to accomplish, work can stress us out easier than a normal, healthy individual.  RA patients are prone to depression as well, which can turn a stressful situation  into a nightmare (the Arthritis Foundation discusses RA and depression here).

It’s important for us to learn how to effectively cope with stress and to ultimately prevent it all together in order to maintain our health.  Helpguide.org has a fantastic stress management plan, and I have a few tips of my own:

  • Know your limits.  I’m terrible about biting off way more than I can chew.  I like staying busy, but its hard for me to find the border between busy and overloaded.  In order to prevent this in the future, I’ve dropped a lot of the classes I had sign up for this summer and fall (13 this summer and 18 this fall have now turned into 7-10 this summer and 15 this fall).  It’s all about time management, something us college students could tell you a lot of.
  • Stay organized.  I learned to do this once I got into high school and started taking tons of honors classes at once.  I keep myself organized so I don’t forget any assignments by keeping a planner.  I write absolutely everything that I may otherwise forget into my planner, and I take it to every class, every student activity meeting, and every event or interview I cover for the newspaper.  The notes section in the back is great when I’m on the go and need to jot down a few reminders.
  • Understand that sometimes you just need a break. If you get frustrated with a project, chances are you’re going to get more and more irritated as you work on it.  Even when working on a strict deadline, its always best to take a break from what you’re working on.  Do not allow yourself to think about the project at all, instead, watch a favorite tv show, eat a snack, or surf the web (heck, you could even play some online games real quick, just don’t get addicted!).  I like to draw or paint when I’m stressed because it requires all of my focus.  When you come back to your assignment you won’t be as stressed out about it and will therefore be thinking clearer, which could be the difference in getting the project done on time and doing a better job on it.
  • Reward yourself for a job well done. I discussed rewarding yourself for doing difficult tasks during a flare in a previous entry.  But we should reward ourselves whenever we reach a personal accomplishment.  Besides, who doesn’t enjoy a little shopping trip from time to time?  🙂

Stay healthy and stress free!

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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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A True Arthritis Survivor

Author Melinda Winner has overcome several debilitating diseases to achieve her dreams of being a successful writer and cook, having published two cook books and won many prestigious competitions as well as appearing on the Food Network.

The Pittsburgh native attended culinary school as well as film and television production school in North Carolina in her early thirties. Winner worked as an art department coordinator and then as an art director for several years until returning to her true love: food service. However, Winner feared her ambitions had come to a permanent halt after being diagnosed.

Winner was diagnosed with Rheumatoid Arthritis at 25, although she believes she may have had it as a young teen as well. Over the next several years she was diagnosed with reflex sympathetic dystrophy syndrome in her left hand, arm and both feet, followed by fibromyalgia, osteoarthritis and degenerative disk disease.

An arthritis advocate, Winner met with members of congress to discuss reinstating the consultation codes so patients can see a specialist. She also asked congress to support the arthritis prevention, control and cure act of 2009 and the preventive health care Medicare fracture prevention and osteoporosis testing.

Q:  Could you describe your experiences when you were first diagnosed with RA?

A:  When I was first diagnosed I thought it was no big deal. I thought it was just an ache and a pain that I could handle. I was wrong. Because I did not take the meds, I have a lot of deformity. My disease progressed quickly. Then I felt sorry for myself and gained over 100 pounds. Then I got mad, I began to research, and knowledge is power. I lost the weight by cutting fats, snacks and breads. I began walking short and slow at first and then faster and longer as time went on. That was 16 years ago and I kept the weight off. I was on almost every drug out there for RA and my other forms of arthritis and nothing worked, until Enbrel. I have been on Enbrel for about four to five years, it worked wonderfully and I have my quality of life back. I would like to stress the importance of early diagnosis and treatment. If I had listened to my physicians I would not have as much damage as I do.

Q:  Your MySpace page says you have “five forms of arthritis and a birth injury.” Could you explain this further?

A:  The birth injury is to my right arm. When born I weighed in at well over 12 pounds. My Mother was a diabetic; they are notorious for large babies. My shoulder was crushed as I passed through the birth canal causing severe nerve damage. I have no feeling in my right arm or hand. My right arm is shorter and I cannot lift it any higher than my waist and cannot extend it out forward or backward.

Q:  After being diagnosed, would you have ever thought that you would become a published author, despite having RA?

A:  No, I actually thought at first this was it for me, so much pain and deformity and I already had the birth injury. I simply thought this was the end of the line for me. Who would hire me? I was worthless. Again wrong, that’s what I get for thinking. Actually, having RA had made me a better person. I am more compassionate and caring. I value life. Dedicating my life to helping others like myself transition and learn how to regain their independence in the kitchen and just enjoy life has been a blessing. I have met the most wonderful people with loving and giving hearts despite their illness and pain, true arthritis survivors.   I am honored just to have met them.

"A Complete Guide to Cooking With Arthritis" is available for purchase on Amazon for $17.93. The Kindle edition is $9.99.

Q:  What inspired you to write both of your cookbooks?

A:  The first was a group of construction workers in Mississippi helping after the Katrina disaster. I made them gourmet lunches and delivered them daily. They would tell me all of the time: you should write a book, so I did: “Yankee Cooking with Southern Charm” (I was born in the North but live in the South). I loved both styles of cuisine. After writing the first one I knew I wanted to write another but was not sure what kind.

The more people I met that had arthritis, chronic pain and/or injury that were settling for pre-cut and pre-packaged foods and were experiencing great deals of pain and swelling as I was made me realize that just because we were sick we didn’t have to settle for instant foods that were making our health worse. So I began to experiment with different foods. So many other folks asked me how I could make breads and cakes from scratch while in pain. Then it hit me. I had been preparing foods my entire life incorporating almost every part of my body. Hence my second book: “A Complete Illustrated Guide to Cooking with Arthritis.” It not only has recipes from everyday to gourmet but also color photos with step by step directions how to prepare the recipes using items found in the home and other parts of the body, not just the hands.

Q:  How is your second cookbook different from your first?

A:  The first is simply great recipes and the second is a first of its kind, a self help cookbook for those who have arthritis, chronic pain or injury. It also contains a culinary resource guide, terms section, my personal story and tips for living with arthritis. This book also comes with a free audio download version. The recipes are different, such as red cabbage cake, Moroccan potato salad, Bayou view sludge cake, etc.

"Key Lime Bunts" Yummy!

Q:  What kinds of recipes will readers find in your cookbooks?

A:  Everything from every day to gourmet. Breads, cakes, pies, barbeque sauces, red cabbage cake, Moroccan potato salad, Bayou view sludge cake, stuffed chicken egg plant parm, potato salads with chicken, bacon and cheese, stuffed portabella mushroom caps. Many sea food recipes.

Q:  What is an example of some of the tips readers with arthritis or another disability will find in “An Illustrated Guide to Cooking with Arthritis”?

A:  How to slice apples, squash, pears and potatoes using the forearms. How to transfer water, move laundry and trash cans using a plant stand. How to arrange the kitchen to ease on pain. How to prepare spices and herbs for later use using an ice cube tray. How to make a loaf of bread from scratch without kneading by hand, roll out pie and tart crusts without using the hands.

Q:  What was your favorite part in creating your cookbooks?

A:  Getting to share all of the new creations with my friends, family and neighbors, and of course, the tasting for myself.

Q:  What was your biggest challenge (RA-wise) in creating your cookbooks?

A:  Typing! My hands were purple and some days I just could not type because they were so swollen. Finding a publisher was not really easy either. I must have sent off 30 book proposals before hearing back from one with a yes. The stress of waiting to hear took a toll on my RA.

Q:  Is another cookbook in the works?

A:  Not really a cookbook. My next book is a collection of inspiring stories from many arthritis survivors. How they have triumphed over pain and of course their favorite recipe will be added at the end of their story. I am a true foodie.

Q:  When you’re not cooking, what do you like to do in your free time?

A:   Travel, spending days at the beach with my family, horseback riding when the pain allows and boating and chatting with friends.

Q:  What is your philosophy on living a life with Rheumatoid Arthritis?

A:  You live until you die and what you do in between is your choice. Meaning God gave us one life, so live it. I believe whole heartily, no matter what your age or condition, it is never too late to become what you might have been.

Winner hosts the Arthritis Survivor’s Network on Facebook, a page dedicated to creating a community for arthritis patients, spreading arthritis awareness, and, of course, sharing recipes.  Both of Winner’s cookbooks are available on Amazon.

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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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