Even though I didn’t mention as much here on my blog, most people who follow me on either Facebook or Twitter are probably already familiar with the fact that I was flaring this past weekend. On the scale of flares it certainly wasn’t one of the worst that I’ve had, but then again that doesn’t necessarily say too much…as each and every flare is indeed its own event.
Earlier today, on my way to my Monday morning physical therapy session (trust me, it’s the best way ever to start the week!) I noticed a new pain; a pain that I was quite unfamiliar with. You see, while over the past few years I’ve had pain in almost every joint in my body (including me jaws), there was one set of joints that had not been affected by pain and inflammation: my hips.
They were sort of like the Switzerland of my autoimmine-ravaged body: 100% neutral, and completely happy to be so!
And just this past weekend, as I was showing my RA Bingo (Flare!) to a friend, I quietly chuckled to myself and wondered if I would ever be able to mark the squares labeled “right hip” or “left hip”.
This morning, I got my “wish”. My hips were flaring…for the first time ever. And just how I’ve learned to distinguish shoulder pain from elbow pain from wrist pain from finger pain from knee pain from ankle pain from shoulder pain, and so on and so on, I’m now learning exactly what it means to have hip pain. (On a serious note, there’s actually something to be said for trying to differentiate these different pains…for me, it seems much more manageable than trying to deal with one overwhelming swath of pain.)
And let me just say, if your hips are one of the joints where RA attacks the most, I now have nothing but the utmost admiration for you. You are, indeed, my superhero.
Now I know, pain in any of the joints can be quite excruciating…but even with all of the problems along the entire length of my left leg, I’ve never quite been in the situation–as I was earlier–where I couldn’t even lie comfortably on my back. Just the pressure being exerted on my hip bone by the weight of my leg seemed too much to bear, and was quite difficult to alleviate.
Luckily, I was (once again) in physical therapy when this new pain presented itself. Rheumatoid arthritis can be many things, but today I learned that it can certainly be, among others, a real pain in the…hip! (Although at times I’d like to use another three-letter word to describe it…)
On the bright side, at least my chances of winning at RA Bingo have now increased. Blackout, anyone?
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
NYC Sick Chick Club
An informal group for younger adults (20-50) who suffer from autoimmune diseases like Rheumatoid Arthritis, Lupus, Fibromyalgia, Ankylosing Spondylitis, etc. Our goal is just to get together with other people who “get it” when it comes to dealing with an invisible illness. This group is not limited to women. We’d love to have some sick dudes join us, too!
Read More: http://nycsickchickclub.blogspot.com/
Mutiny on the Body
I am just an average woman, married with daughters in college and diagnosed with autoimmune diseases (Rheumatoid Arthritis, Sjogren’s Syndrome, Raynaud’s Syndrome). I have spent years trying to figure out how to turn living with autoimmune diseases into a positive experience. Then a friend suggested that I share some of my personal struggles and insights about living with autoimmune diseases. I thought about it. She was right. I am not the only person with a variety of autoimmune diseases. I can learn a lot from others with autoimmune diseases and hopefully they could learn from me. Also, I should probably put my college education to use-English and journalism major. I hadn’t written any thing for publication for over 20 years. I took a big step and started this blog. My skills are rusty and I am still looking for my voice, but I hope that you will hang in there with me.
Read More: http://www.mutinyonthebody.net/
From This Point. Forward.
I started writing this blog in September 2008. To deal with RA, I decided in my very first post that I would have to start by taking my life one day at a time. Since then, this blog has been a very honest record of trying to adjust to life with RA by always trying to look forward.
Ride with PsA
I was diagnosed with Psoriatic Arthritis in July 2010. My husband and I had just returned to the UK after living in France for 8 years. I had recently given birth to my youngest son and it was during my pregnancy that the pain started in my left wrist. It grew steadily worse until, by the time my baby was born in February 2010, I could barely lift him. I went to the doctor in France who told me it was tendonitis and advised me to wear a wrist support and take paracetamol for the pain.
Read More: http://ridewithpsa.wordpress.com/
What Is This Mom Thing???
I’m a stay at home mom. I love crafting and my husband and my son. Recently relocated to Syracuse (is 3.5 years recent?). I still miss my family and friends. I live with Rheumatoid Arthitis and Fibromyagia and try to keep and open heart through it all.
Read More: http://www.whatisthismomthing.blogspot.com/
Even thought I’ve been a designer in some form or another for most of my life, I have never considered myself to be a comic book artist. So during these past few weeks, as I worked on my blog’s new layout and design, I found myself re-reading Scott McCloud’s seminal work Understanding Comics. (I had previously read this book many years ago, when it was all the rage in the web development and interface design community.)
One part of this book that I really enjoyed this time around was the discussion of motion lines, originally called ‘zip-ribbons’, which are used to represent the movement of objects through space in a single panel. (For complete information on the history and different styles and methods of showing movement, be sure to check out the book!)
As I read this section, I chuckled and thought to myself that the next time I found myself being once again slowed down due to my rheumatoid arthritis, all I needed to do was power up Photoshop and add some of these motion lines behind RA Guy. Hence, this new image here to the left.
After almost five and a half weeks of little to no disease activity, my RA once again seems to be slowly tapering up. Yesterday, for the first time in months, I left the house with my crutches. My left knee in particular has a tendency to go from ‘fine’ to ‘out of order’ is just a matter of seconds. On my way to physical therapy this morning, I once again found myself trying to figure out the best way to cope with the tremendous pain (which was, thankfully, partly relieved within the hour during my PT session.)
How long this will last I have no clue. I’m less concerned about the fact that my flare-free streak seems to be coming to an end, than I am happy with the fact that I had much more time than usual during the past month to take a break from the chronic pain and debilitating inflammation.
Now, I’ll just have to put my cape back on and get back to work…
In the real world I may not be able to move as easily as I did just a few days ago…but in the comic book universe, I’ll continue to do wonders.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
I started showing symptoms for RA when I was 17, but it took about six months for a diagnosis. I was misdiagnosed with fibromyalgia by the nearest pediatric Rheumatologist (who was a two hour drive away, and never stayed in the room with me longer than fifteen minutes). I was unable to see an adult Rheumatologist until turning 18. But once I got in with a good doctor, I was diagnosed correctly and started on treatment.
What advice would you give to someone who has just been diagnosed with RA?
First off: Take a deep breath. Pour yourself some tea/soda/coffee, cup it in your hands, drink slowly and don’t you dare worry about one thing until you’ve finished your cup. Take five minutes to sit still and quiet.
If you have an overactive imagination and a good friend or family member, begin the research of the RA by asking your friend/family member to do the google search for (or with) you. When I was first diagnosed, my mom did the intense research and then told me what I needed to know. Since just seeing some of the pictures made me sweat and cry, this was a good way to hear bad news in a gentler way. As I got used to the idea of it, I began to do more of the research independently.
Do you use any mobility aids?
Right now I always have a stretchy medical bandage thing for finger physical therapy, and I’ve spent time in and out of braces. I need to invest in a good bottle opener.
How has living with RA helped to improve your life?
I think living with an autoimmune disease can be a gift, because it forces me to live consciously.
Recently I had to have surgeries on my fingers (see below). Before my second surgery, I found myself just laying my hand flat on my desk and staring at it. For those two or three weeks before I thought I’d lose the ability to ever straighten that finger, straightening it was a blessing—it became a miracle. RA makes me appreciate what I have.
Do you have any visible signs of RA?
Pre-this summer, I had significant swelling in my pinky and pointer fingers on my left hand and on my middle finger on my right hand. A few months ago, my joints began to collapse with no warning. I’ve had fusion surgery on my pointer-left, which has left my finger scarred and frozen (won’t bend anymore). I had surgery my right-middle, but unexpectedly the doctor was able to save the joint. This means more scarring and a lot of physical therapy, but at least it still bends. The pinky’s still swollen until later this fall, when I expect I’ll be having a third surgery.
I also have Raynaud’s Syndrome, which means cold and blue feet.
Can you please describe some of your favorite coping strategies for living with RA?
Before the collapse of my joints, I would do small, quiet things that brought me joy at least once a week. For me, that was going to a local coffee shop with a favorite book, buying fresh bread, or hanging out in a book store.
After the collapse of my joints, I’ve found I need an extra push. So I am beginning to do small impossibilities in increasing doses. I try to do one small impossible thing a day (like taking the time to eat a salad or stretch), one bigger impossible thing a week (giving myself the HUMIRA shot or going to a dance class), and one really impossible thing a year (travel abroad or write a book). Since I started doing these things, consciously, I’ve found I feel more in control and confident.
Blogging has also done wonders for me. As a young adult trying to deal with this when my peers were all caught up in the latest fads and gossip, I often felt very alone. Blogging allowed me to express what I felt—the good and the bad. It is also a huge encouragement going forward, as I’m able to look back at some of my entries and remind myself of my optimism (or sometimes remind myself that this pit isn’t the only one I’ve been in). Recently I discovered that by being honest on my blog, I also opened the door for others to be honest in their struggles. It’s a great way to create a community and to get support.
Can you please describe your current medical (traditional and alternative) treatments?
HUMIRA, Methotrexate, Plaquenil, Prednisone, plus tons of vitamins.
Is there anything else about yourself that you would like to share?
I’m in my third year as a college student, getting my undergraduate degree in English/Creative Writing. I work part time during the semester and full time at breaks. I travel a lot, and have gone into third world countries to do aid work. I’ve written three full manuscripts (novels), and hope to one day be a published author. All this to say—RA might try to take our hands, our joints, but it can’t stop us from doing what we love (unless we let it). C.S. Lewis said, “You do not have a soul. You are a soul. You have a body.” I cling to this whenever I feel myself slipping. I am who I am, and RA can’t cripple that.