by Gemma K. Nicholls
I was diagnosed with the chronic disease Rheumatoid Arthritis at the age of sixteen. I was a young, fit and healthy teenage girl before I got diagnosed, I had the world at my feet. My world was blown apart when i got diagnosed with Rheumatoid. I had to stop doing everything that I loved, I had to grow up sooner than I should have. Lost my confidence and my self esteem. I had to let go of the person I was before I got diagnosed. I had to adapt to a new life and a whole new way of thinking. My book talks about the truth about the awful disease Rheumatoid. To help a lot of people who has been newly diagnosed with the illness. What emotions you go through, the truth about what happens to your body. What to expect.
More Info: Fighting Rheumatoid (Amazon.com)
A couple of years ago, a breath of fresh air entered the RA blogging community. Even though we emailed many times (how I loved all of the questions she always asked me), I don’t think I ever got to know her real name. Like myself, she wrote under a pseudonym. Many of us knew her solely as RA Suberbitch. I always looked forward to her blog posts, which usually cut to the chase, eliminated the niceties, and put a voice to our thoughts.
It was with much sadness that I received news earlier today that RA Superbitch passed away last week. (I have no direct information beyond what is available on her Facebook fan page.)
RA Superbitch, you will be missed.
“I am so sorry to post that the RA Superbitch passed away this morning. She was peaceful at home with her husband and son. I know that she would want you to know. This site, her blog, and her RA friends on each of those have helped her in so many ways throughout the years. You were able to understand a side of her & support her in a way that her real life friends were unable to. I don’t know how much detail her husband would really like me to post on here. I will check with him in a few days and repost any info that he would like me to. Please keep her family in your prayers.”
June 4, 2011.
Facebook Memorial Page: http://www.facebook.com/pages/RA-Super…
Updated 4:05pm to include RA Superbitch’s 1st Blog Post.
“She is Frequently Kind, and then Suddenly Cruel.”
November 14, 2009
So I have rheumatoid arthritis…yeah, it pretty much is horrible. When people can’t understand why I’m having a bad day, I often say, “Hey – here is an idea…Why don’t you… try smashing a brick into your wrist? Oh? That hurts? Well, too bad; you’re just getting started. You’ll have to smash that same brick into your other wrist, of course, but then also each knee, each hip, all ten fingers, all ten toes, your shoulders if you can still lift anything at this point, your elbows, and finally, your jaw…yeah, both sides. When you are all down with that, come back and tell me how you feel, but try to stay positive! No one likes a whiner! You know, you can affect how you feel by how you envision the pain! It is really all in your mind!”
Of course it does. Yet, we that live each day with a disease called RA (short for rheumatoid arthritis) are asked to do pretty much the same thing on a DAILY basis. Not only that, but many of us would have learned to jump up after the brick incident and go to work or play with our kids or make dinner. And dare we complain for one second, any number of people would accuse us of “feeling sorry for ourselves.” Gasp!
As one can imagine, there are MANY times during the day that I want to tell these people to go jump in a lake. In fact, there are SOOOO many things I want to say about this disease and about the public’s attitude towards it…but I don’t. Like most of you, I was brought up to be polite. And I care too much what others think. God forbid I be grouped into the “whiney” category. And I also know that if people think you’re not helping yourself, they will not help you. This is ultimately very important because if you have RA, you will find yourself having to do things to survive you would never have begun to believe before you were sick, and one of those things is to let people say crazy, hurtful things based entirely on their ignorance about your own horrible disease. You let them impart their “wisdom” so that you can make them feel better about watching your kids when you have an appointment, or giving you a job, or even picking up the tab so you can continue to send all your money to the insurance company.
But I’m so so tired of keeping my mouth shut. It is who I AM in my real life, the woman with the brave face and enough optimism to keep everyone smiling when I’m limping, the consummate cheerleader, Rebecca of Sunnybrook Farms, Suzy Sunshine… and let me tell ya, it is sickening to my alter-ego.
And here she is – my alter-ego. I have brought her out for purposes of this blog. She is mean. She is cranky. She should be; she deals with constant pain and limitations. She gets told “no” a lot. She swallows over twenty pills a day, and is pushed around by her family, strangers, insurance companies, co-workers and even doctors who think she should accept her reality. And now, she is fed up with the hand she’s been dealt. She has “snapped,” so to speak. She is about to say what she’s thinking about this messed-up disease and she will take no prisoners! She is going to let it all out without fear of consequences. She is going to make people angry and then sit back and smile that she did. She will say it like it is so that the rest of us can hear it. She is essentially Gabby Solis from Desperate Housewives with an auto-immune disorder, and she is ready to blog.
RA Guy says we are super-heroes if we are all living with rheumatoid arthritis. He couldn’t be more right. So by day I’ll continue to be an RA superhero. I will raise my family and do my job, and send money to the arthritis foundation and educate myself and my doctors about my condition… but online I will be a rip-roaring, you can’t stop me from saying it, true to my word- Bitch!
So part superhero and part bitch. That makes me a superbitch.
I AM an RA Superbitch, and this is my blog. Enjoy.
RA (Maybe) Mamma
Thoughts & Prayers for RA Superbitch’s Family
Pain, Pain, Go Away
Rest In Peace
The Single Gal’s Guide To Rheumatoid Arthritis
Paying My Respects
Not Standing Still’s Disease
Updated June 21, 2010
“Many have asked about the cause of her death. She had a procedure done (not related to her RA) around two weeks before her passing. She felt tired & a lil off the morning that she passed away so she laid down to take a rest. When her husband checked on her, she was gone. The dr’s believed it was a complication due to the procedure she had done.
I hope that each of you have been doing well. I am sorry it has taken me a bit of time since my initial posting until now. Needless to say, it’s been a rough time for many of us (esp her family) since her passing. Her husband has been reading through your posts & each of your kind words have touched him. It is nice to see what a positive impact The RA Superbitch made to so many others. She is now free from pain & the daily struggles that she faced. She is now an angel that will be looking over each of us.”
During the many years in which I have lived with rheumatoid arthritis, I have learned firsthand the importance of controlling the thoughts that often bounce around my head. Quite often, especially during my worst moments, telling myself that things will get better makes me feel…well, better. And telling myself that things will get worse will make me feel…you’ve got it — worse!
Now, I am in no way saying that I am denying myself the ability to connect with what is happening to my body, nor am I preventing myself the opportunity to experience the highs (yeah!) and lows (I believe that life is not about being happy all the time…) that often mark my days. What I am doing is accepting that being an optimistic realist is one of my most essential coping skills, when it comes to living with this disabling and chronic illness.
It’s easy to remove the obvious, major thoughts of self-doubt and self-blame (or at least it’s easy now, looking back on the past few years). What is a little more difficult is to recognize and eliminate the numerous little voices of non-support than present themselves all too often. Having focused on this finer level of negative thoughts during the past few months, I have been able to see a noticeable improvement in how I deal with the challenges that come my way. I feel much less stressed than I used to, and this in turn makes going through each day not only possible but even more enjoyable.
When I woke up this morning, I immediately knew that I was not going to go swimming. It wasn’t that I was in particularly bad shape; I just felt a little more tired than usual. So without so much as a second’s hesitation, I decided that it would be best to stay home and rest. I made this decision, and moved on with my day. No regret. No sadness. No unhappiness. It’s not like I’m going to stop swimming forever…it’s just that today was one of those days when I needed less physical activity, and more rest. Only this morning did I stop and realize that this was the first time I’ve made the decision to not exercise without feeling guilty, without thinking that maybe I should have just pushed a little more and gone through with my usual morning routine. Experience has shown me that some of my biggest setback were triggered by pushing myself just a little too hard.
Just a little over an hour ago, I experienced a pretty strong flare involving my hands, elbows, and shoulders. As the inflammation increased and my joints and muscles began to give out, I bundled myself up for the event (today is colder than usual) and selected some music (Chopin’s Nocturnes and Golijov’s Oceana) from my iPod to listen to. As I lost the use of my upper body, and as the pain once again peaked, I was surprised at how amazingly calm I was. No, not the “I need to calm my thoughts” state of being that so often accompanies the symptoms of my disease, but a complete and total calm. There were no thoughts of what I should or could instead be doing, no guilt about “resting”. Every thought that crossed my mind was one of 100% support for what my mind and body were experiencing at the time.
All of these feelings are new to me, as is my ability to remain calm during a flare (this is been one of my personal goals for more than a year now). And in certain ways, this newness is still a little bit uncomfortable to me. Not that I’m complaining though…I know that this is something that I can totally get used to!
I can’t eliminate my pain and disability, but I can get rid of those thoughts that don’t provide me the support that I need to continue moving forward!
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
RA: Ready For Action
With the help and support of friends and physicians, I am trying to look at the diagnosis of Rheumatoid Arthritis as an opportunity to learn and grow and not a condemnation to sit and decline.
Read More: http://ra-readyforaction.blogspot.com/
Twists OF Feet
Adventures of a cyclist with rheumatoid arthritis riding across the country!
Read More: http://twistsoffeet.wordpress.com/
Inflamed: Living With Rheumatoid Arthritis
I’m from Minneapolis, MN and was diagnosed with rheumatoid arthritis in July 1997. The diagnosis was a shocking, devastating blow. The only person I knew who had RA was my grandmother who got it when she was in her 60s, I believe. Growing up I watched her struggle with great pain and become crippled by the disease. The day that I was diagnosed I remember going home from the doctor’s office and crying alone in my room thinking about my grandmother’s ugly twisted fingers and collapsed knuckles. Was that also my fate at age 18? I had been an active kid and teenager. I played basketball, fastpitch softball, tennis, and just really enjoyed being physical and running around outdoors. I also played the piano for nine years and loved to paint and draw and create art. I dreamed of traveling the world and doing so many things. Now with the daily debilitating pain of RA, I felt helpless and alone. How could I possibly live these dreams when I could barely take a shower or get dressed on my own? It didn’t seem fair.
Read More: http://inflamed.wordpress.com/
I Don’t Know…It’s A Mystery!
I’m a 20-something girl who grew up with Rheumatoid Arthritis. Now I’m married, we have two kitty children and I get myself into all sorts of shenanigans. This blog is about those shenanigans.
Read More: http://lydaclark.blogspot.com/
A Steadfast Love
I am a 40 something mother of three college aged sons. I enjoy spending time with sons when their schedules permit. One of my favorite places to be is in the kitchen baking. The fragrant smells radiating from the kitchen are always comforting and welcoming. I am also a person who lives with an autoimmune disease called Rheumatoid Arthritis. It is a debilitating and often painful disease with no cure. I am so thankful for my Heavenly Father who comforts me when no one else can. He gives me strength when I do not have any left. He surrounds me with His peace that passes all understanding.
Read More: http://cammieskitchen.wordpress.com/
Hi, I’m Kelby! It’s nice to meet you and thank you for visiting my blog. I’ve been diagnosed with ankylosing spondylitis for 11 years now and have been on Remicade for 10. If I don’t get my Remicade every 4 weeks, I end up in excruciating amount of pain. Other than that I’m technically in ‘medical remission’.
Read More: http://peacheyplanner.wordpress.com/
I have mixed connective tissue disease. For me this includes Lupus, Rheumatoid Arthritis, Scleroderma, Polymyositis, and Raynaud’s. Just so my nervous system didn’t feel left out I also have peripheral neuropathy. Osteoporosis too. But stick around because this list tends to grow!
Read More: http://autoimmunegroupies.blogspot.com/
About me… Well, I’m a stay-at-home mom of two children. My son is getting ready to start pre-school and my daughter is just beginning to toddle. I’m married to my high school sweetheart. He’s a little goofy sometimes, strong others, and I wouldn’t have it any other way! A little competitive by nature, I enjoy challenging myself and coming out on top. One of the biggest challenges I’ve been faced with is Rheumatoid Arthritis. These days, I do my best to not let it get in my way. I love to be on adventures and try to figure out mysteries. Tending to be a little more on the analytical side of things, I believe there always has to be a reason for everything or it doesn’t make sense. Somedays, I wish I could shut this part of me off. Then again, I don’t think I could be me without it!
Read More: http://dreamzncolor.wordpress.com/
Lissa Rachelle Robillard
I am an Artist. I am a wife and mother. I am a self-seeker. I have RA but am not defined by it and I believe that anything worth doing,is worth doing with passion!
Read More: http://lissarachelle.com/
Young Arthritis Network
No matter how many time’s I’ve seen my rheumy over the years I still leave disappointment and please don’t get me wrong my rheumy is fantastic he’s given me a new lease of life but I always leave feeling deflated. I ask myself why I fell like this? Is it because for many years I was told I would grow out of JA ?Do I expect too much?Or maybe I forget my rheumy is not god he doesn’t have all the answers or at least the one I’m looking for the big C – Cure . Am I alone in feeling like this ???
Read More: http://youngarthritisnetwork.blogspot.com/
The Raw Food Cowgirl
I am an artist/photographer, animal lover, horse breeder, organic gardener, wife, and mother. In 2007 I became a RAW FOODIST with the hope of curing my rheumatoid arthritis and fibromyalgia. Within months I was able to quit all pharmaceuticals. My chronic pain was significantly reduced and I lost 70 pounds. This is my continuing story.
Read More: http://www.rawcowgirl.blogspot.com/
Adina, age 30.
Diagnosed with rheumatoid arthritis at age 29 and lupus at age 30.
Photo © Jodi McKee
Brian, age 47.
Diagnosed with rheumatoid arthritis and degenerative spondylolisthesis at age 38.
Photo © Jodi McKee
View the complete project at www.jodimckee.com/portrait-project/
“I was diagnosed with Rheumatoid Arthritis in 2008 and started this portrait project of people who have RA and other autoimmune diseases as a way to cope with my illness and spread awareness about invisible illnesses. My hope for this project is to show the world that there are a lot of younger people out there who are dealing with complicated and often painful chronic illnesses. Also, I think it is so important for the newly diagnosed to be able to see all of these beautiful, happy faces and know that they are not alone.” -Jodi McKee
If you are interested in participating; please contact Jodi.
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