Cane Thug + Ruth Agnes
My friends knew me as a skateboarder, dirt bike rider, BMX dork, comic geek, video gamer, writer, actress, and a diesel femme tomboy of sorts. In short, I’m a bit of a nerd. Now I’m known to strangers as the girl with the cane. I’m in my early twenties and I have Rheumatoid Arthritis. I read once that having RA is like having an invisible life partner (hence: the overbearing Ruth Agnes). Time with RA: 13 yrs.
Read More: http://canethug.blog.com/
Spectacles and Retrospectives
I enjoy living the creative life. I capture and savor moments in the form of photographs. I’m a book nerd and enjoy the pursuit of knowledge. Dr. Pepper is my favorite beverage. I love music. I especially enjoy singer/songwriters who craft narrative lyrics. I am a young adult living with autoimmune diseases. This blog is a collection of stories inspired by the journey.
Read More: http://redheadedjennifer.blogspot.com/
I’ve never been a big fan of mainstream Hollywood movies. Sure, they often leave us feeling happy inside, win many awards, and earn a lot of money…but for me, personally, they are a little too predictable. Instead of spending my viewing time feeling intrigued and wondering what will happen next, I can normally be found marking off all the check boxes on my mental list titled “formulaic plots”.
Quite often, when I sit down to write my blog posts, I have in mind both “what I wish I could write” and “what I actually need to write”. I sometimes wish that all of my blog posts communicated news such as a decrease in pain, an increase in mobility, or a lessening of depression. I wish that I could talk about the latest tech gadget that I just purchased, especially after listening to all of the podcasts from the Consumer Electronics Show that took place in Las Vegas this past week. I wish I could write about how my medicines are providing complete and immediate relief, with (get this!) no side effects. And then, last but not least, I wish I could write about a rainbow spreading out across the sky as I walk (or jog? or run? actually, it would be limp) into the horizon, with lots of birds and animals dancing around me. (Okay, I better stop…things are getting a little too Disneyesque.)
But the fact of the matter is that my story is would be much more appropriate for an indie film than for a summer blockbuster. (I’ve stopped expecting that phone call from Marvel Comics!) The plot of my movie would be very unpredictable. Things would get worse…and worse…and worse…before they got better. There would not be the standard transition from problem to resolution to happy ending. At times, it might even seem like the film projector had been set on repeat.
“Full of twists and turns” critics would acclaim, as well as “gritty…but real!”
It would definitely be low (how low can you go?) budget! And whatever money there is, well that would be earmarked for health benefits, and not for the latest technological device…but I’d continue to learn to be more resourceful than ever. Over the past year two of my ultra-mobile laptops, including a MacBook Air, completely died on me. Two months ago I also lost my iPod Touch, leaving me only with a heavy-as-heck 17″ laptop computer that I purchased five years ago (and that it too heavy for me to carry on most days). But this laptop still works, and it allows me to do what I need to, including but not limited to writing this blog.
Parts of it would play like a lot of the pharmaceutical commercials that are oh-so-common in the United States…[snark alert!] full of promises, followed by a long list of all the possible side effects (which in a few rare cases have proven to be life-threatening…or so would say a soothing voice-over). A few members of the audience might call some parts of the movie “slow” — almost no action, and lots and lots of dialog. Sometimes the dialog might not always be too audible, but no need to check the speakers…it’s either the silence of pain and depression or the muffling caused by cries. True independent film aficionados, far from being bored, would be riveted.
And while there would not be your typical happy ending (and they lived happily ever after…), there still would be a happy ending. It may not be too obvious, but it will be there.
So my life on the big screen would not be typical, it would not be predictable, it would not be perfect, it would not be glossy and it would not be big budget. But it would be real. It would be interesting. It would be fascinating. It would be full of fun. It would be full of surprises.
Most importantly, in would be my life…and I’ll continue loving each and every second of it.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
“The best cure for an off day is a day off.”
Once again, I have been asked by my physical therapist to not move any more than is absolutely necessary – my left leg is so inflamed, that the muscles and tendons are pressing against the sciatic nerve, causing an exponential jump in the levels of pain that I am currently experiencing. Over the past week I did notice an increase in the levels of inflammation in this part of my body, but things got really “bad” last evening…so much so that all night long I was unable to find a comfortable sleeping position.
First think this morning, I called my physical therapist, and a little more than an hour later she was here at my house. First she applied heat along the length of my lower leg (nice), and then she massaged the areas right below my knee and right above my ankle (ouch). We then pulled out a Sharpie marker and she marked three sets of four dots. These spots indicate where I am supposed to place the electrodes of my personal TENS machine. I’m supposed to stay in bed all day, and continually rotate the application of analgesic current through these three most-affected areas of my leg.
So I’m spending the day in bed, and I’m loving it! I just ate lunch. I’m almost finished reading Emma Donoghue’s Room: A Novel (which I just started reading yesterday). I’ll probably watch some television this afternoon, and I’m already looking forward to tonight’s BCS Championship football game. Plus, it’s Monday…what better day is there to spend in bed?!
I found myself in this exact situation about three weeks ago, with the exact same problems in my leg and with my physical therapist asking me not to move too much. Then, it was my second-to-last day of class (I ultimately ended up canceling classes), and I had to give two final exams the following day. Christmas was less than a week away, and I had done absolutely no shopping. Last time, my stress levels were quite high. Now, I’m in the middle of a month-long vacation, and my stress levels are low.
While ideally I’d love to not have to experience this current pain and immobility, I’ve come to realize that it’s not the end of the world.
Today is a day that I can spend in bed. I can rest and relax. I can pamper myself. (My husband deserves a lot of credit for pampering me as well!) I can continue to do activities that I would do on most days, such as: reading, watching television, surfing the Internet, and listening to music/podcasts.
If I approach things from this perspective, my day today actually ends up being a better day than most! This is quite nice, especially considering that my pain is high and my mobility is low. I think I’m getting a hang of things.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
A Nation Unaware: We Need To Increase Juvenile Arthritis Awareness
by Ashley Boynes
“She’s just a hypochondriac.”
“It’s all in their head. They just want attention.”
“Oh, you’re too young for arthritis.”
These are all phrases that children and teens with juvenile arthritis will, unfortunately, come across many times during the course of their lives and their illness.
Even the adults that these kids look up to – parents, teachers, doctors – tend to lack the understanding and/or knowledge needed when dealing with a juvenile arthritis patient.
As a whole, the general public is still vastly unaware of juvenile arthritis, despite the work that JA advocates like myself and many countless others put in to increase awareness – and, despite the fact that it is the 6th most common childhood disease, affecting some 300,000 kids in the United States.
Juvenile arthritis (JA) refers to any form of arthritis or an arthritis-related condition that develops in children or teenagers who are less than 18 years of age.
Impact of Juvenile Arthritis:
- Approximately 294,000 children under the age of 18 are affected by pediatric arthritis and rheumatologic conditions.
- State prevalence numbers for pediatric arthritis and rheumatologic conditions are available in the “Prevalence of and Annual Ambulatory Health Care Visits for Pediatric Arthritis and Other Rheumatologic Conditions in the US in 2001-2004”.
- Ambulatory care visits for pediatric arthritis and rheumatologic conditions averaged 827,000 annually.
- Juvenile arthritis is one of the most common childhood diseases in the United States.
- Arthritis and related conditions, such as juvenile arthritis, cost the U.S. economy nearly $128 billion per year in medical care and indirect expenses, including lost wages and productivity.
Read More: Arthritis Foundation: Juvenile Arthritis Fact Sheet
Jenna’s JRA & Uveitis
This is the story of Jenna. Diagnosed at four years old with Juvenile Rheumatoid Arthritis and Uveitis. This is her journey….
Read More: http://jennabeansjourney.blogspot.com/
Kids get arthritis too!
Jess was diagnosed with JRA (juivinile rhuemitude arthritis) when she was 18 months old, but has had it all her life. We created this blog to spread awarness about arthritis in children.
Read More: http://findacureforjra.blogspot.com/
Gavin’s Story! Living with Juvenile Arthritis…
Gavin was diagnosed with Juvenile Rheumatoid Arthritis when he was 21 months old. He also has Uveitis.
Read More: http://gavinsstorylivingwithja.blogspot.com/
Arthritis and Bruce
A year in the life of Bruce with Arthritis.
Read More: http://bjdarthritis.blogspot.com/
Our Journey with Juvenile Arthritis
I am setting up this blog so that friends and family members can follow our journey with JA [juvenile arthritis] Jackson was diagnosed in November of 2009.
Read More: http://thearmstrongjourneywithja.blogspot.com/
Brianna’s Journey with JRA
This is the journey of Brianna (who was diagnosed with Juvenile Rheumatoid Arthritis at the age of 16 months) and her Sisters & Brothers! For those of you who are following our journey please start reading from the bottom of the blog. This will bring you to the first day.
Read More: http://tonsoftoes.blogspot.com/
The Sloan Siblings JRA Journey
Many of our close friends and family often ask “how are the kids doing”? Most people do not understand what Juvenile Rheumatoid Arthritis (JRA) really is and how it deeply affects Jake, Hannah, and our entire family! Sometimes all I can do is walk away, hide my tears, and just pretend all is okay! We share this JRA Journey with you and hope you can pray for Jake and Hannah and the other 300,000 children who suffer from JRA.
Read More: http://thesloansiblings-myjraheros.blogspot.com/
Jackson’s Journey with Juvenile Rheumatoid Arthritis
A few months before Jackson’s 3rd birthday he was diagnoised with Pauciarticular Juvenile Rheumatoid Arthritis and Uveitis. Our lives would be forever changed and I could have never prepared for what we were about to go thru!
Read More: http://jacksonmpohl.blogspot.com/
My 9 yr old is an old lady that turns purple (& other fun stuff)
*Raising Awareness* My 9 yr old daughter has Mixed Connective Tissue Disease, (Lupus) which means multiple overlapping autoimmune diseases. She has Dermatomyositis, & Juvenile Arthritis. Yup, arthritis. She turns purple when her hands and feet get cold, which can happen from A/C. Her skin also gets extra tight in places, called scleroderma. She can’t wear any shoes without socks unless the sides are open. Join us on our journey of learning, dealing and living with these issues.
Read More: http://deetipton.blogspot.com/
Chicken’s JRA Story
My name is Lana and I’m a loving wife to my husband, Matthew, and proud mother of two amazing children. My son, Daniel is 10 and our daughter, Sami is 6, and being the mother of my children has been tough but I wouldn’t change a second of it. Daniel has severe allergies and asthma and Sami has Juvenile Arthritis. And since I’m just now starting this blog I’m going to start from the beginning.
Read More: http://chickensjrastory.blogspot.com/
Jacob’s uveitis and JRA Journey
Jacob’s diagnosis of Juvenile Rheumatoid Arthritis at age 5 until present day. The everyday journey of living with a child that has a chronic illness.
Read More: http://jacobsuveitisandjrajourney.blogspot.com/
We Shall Overcome
This is the story of a four-year-old girl who was diagnosed with juvenile rheumatoid arthritis (JRA) when she was 22 months old. This is her journey to complete and total health. This little girl is brave, fearless and an overcomer. She is my daughter, Mia, and I am so proud of her!
Read More: http://weshallovercome1215.blogspot.com/
One Day At A Time…
Hi, this blog was initially started to document my daughter’s trials and triumphs as she lives and copes with an auto immune disease, Juvenile Rheumatoid Arthritis. Although I often update on Ayla’s condition, this blog has become our “family blog” as well. Ayla was diagnosed at the age of 18 months old, she is now three and we are still fighting this battle.
Read More: http://lesli-onedayatatime.blogspot.com/
At the beginning of the summer of 2008, we noticed that Abby would “walk funny” from time to time. We couldn’t really put our fingers on exactly what she was doing but we knew that it wasn’t right. She would only do it for a day or two and would be fine for a few weeks and then she would do it again.
Read More: http://abbys-jra.blogspot.com/
My Teeny Tiny Champion
I have decided to copy specific entries from my private blog in order to share my daughter’s story in a public but annonymous environment. Many people, even friends, have little idea what managing juvenile arthritis really involves. My hope is that the next time you meet a child with arthritis you are just a little more sensitive and don’t say, “isn’t that just growing pains?”
Read More: http://kidsgetarthritis2.blogspot.com/
I’ve been cruising along at the same altitude since my last blog post a couple of days ago. No, I haven’t gotten any better…but more importantly, I haven’t gotten any worse. This most recent uptick in symptoms shouldn’t be too much of a surprise for me, as it coincided perfectly with the end of a Prednisone push that I started in mid-December.
One of the things that I have learned and continue to learn is the importance of turning negative thoughts into positive thoughts. A couple of days ago, wanting a change in scenery during the afternoon, I transferred myself from the king-sized bed in my bedroom to the twin-sized fold-out sofa bed in my home office. (My three small dogs — cairn terrier, terrier/chihuahua mix, and pug — also thought it was quite a novel concept…each one quickly worked on staking out his or her spot on the “newly” appeared mattress.) As I lay there and put down my digital book reader to take a break, I marveled upon the literally thousands of books that I have amassed in the past decade and a half, since I was in college.
Then, right at eye level, I saw Out of Joint: A Private and Public Story of Arthritis by Mary Felstiner. (I have read this book from cover to cover many times, and have previously written about it here on my blog: Out Of Joint and Out Of Joint, Pt. 2.) I pulled out this book and flipped to a random page. I was struck by the fact that my landing page discussed the importance of turning negative thoughts into positive thoughts.
In a weekend class of volunteers I train to lead a “self-talk” assignment. I’m to write patients’ negative thoughts (“My hands are so weak,” or “My ugly legs are limp”) on the blackboard–except that I’m unfit to write on blackboards; they’re my farewell to arms. Then the self-talk point hits home: transform those nasty insults. “No blackboards for me,” I chirp aloud. “Scribble your negative thought on these 3×5 cards. Then flip them over and rephrase.” My card trick proves a success. We’re speaking to ourselves brutally until we flip sides. My card says:
Negative: I’m so tired. I stupidly nap while everyone else gets stuff done.
Positive: Naptime! I’ve adored it all my life.
And that’s when it hit me–the thought that had been racing around my head all morning was a negative one: I’m not ready for the pain to come back! No wonder I felt so anxious and on edge. I was operating not from a perspective of confidence, but from a perspective of fear. While it was hard from me to tell myself that I was ready for any level of pain or disability that might present itself (especially knowing what I experienced only a couple of weeks ago), I spent the rest of the afternoon doing so.
Slowly, my fear melted away and I started to notice my confidence. I AM ready for whatever might come, good or bad. Even though my pain persisted, being able to experience this type of feeling was absolutely wonderful. Now, instead of the dread of wondering what the following day might bring (sometimes it’s oh so easy to chalk up an entire day as a point for the “loss” column before it even starts, isn’t it?), I actually felt a little bit of curious anticipation. I wonder what tomorrow might bring? All of a sudden I was looking forward to the following day, because I knew it would be an opportunity to allow my newfound confidence to rule…and to put my fear to rest.
At times the negatives are so strong, that it’s difficult to imagine there being an opposite positive…but it’s always there, even if it’s a little more difficult to find. Case in point: Mary Felstiner, just a page or two after the extended quote that is included above, shares her own personal experience of participating in another self-help workshop. When asked what she wrote on the negative side of her card, she responds with “The fear of pain”. When asked what she wrote on the positive side of her card, she answers with “That I can see it coming”.
My past few days have included lost of time resting, some periods of extreme pain where my whole world comes down to my breath, and what can officially be considered my first “arthritis fall” (when getting up from the sofa bed in my home office the other day, my left foot slipped inward underneath me, causing me to tumble to the floor, but not before landing on my left knee–already one of the parts of my body experiencing the most pain–and my left wrist)…but each one of these items has been counterbalanced with a positive, enjoyable event. I cooked dinner last night. I’ve been doing more reading that usual. And last but not least, I’ve actually made a significant amount of progress in the design of a Healing Center–I hope to have something to share in the near future!
My rheumatoid arthritis continues to present negatives, but it won’t get the best of me. I will just have to continue finding the positives…and in the end, this is a good thing. I AM ready for whatever might come.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
- Accepting Chronic Pain: Is it Necessary?March 27, 2015 - 9:09 am
- Harvard Gazette: A Journey Into IllnessJanuary 12, 2015 - 4:19 pm
- Health.com: 11 Famous People With RAOctober 1, 2014 - 9:50 am
- Arthritis Broadcast Network: Spotlight On Arthritis SuperheroesSeptember 10, 2014 - 7:34 pm
- The New York Times: Actress, Artist, Sometimes Both At OnceMay 20, 2014 - 10:29 am