More Rheumatoid Arthritis & Sjogrens Syndrome Blogs

Neo-Jon Says Bring It On
My life with juvenile idiopathic arthritis…and sisters.
Read More: http://neonjonsaysbringiton.wordpress.com/

Surviving Sjogrens
Over the past few months people have asked me what is Sjögren’s Syndrome and funny enough since I don’t look sick some people find it hard to believe I have an illness at all. Education is key!! This will be a place for me to share my story and provide as much information as I can about the disease. More to come in next few days!
Read More: http://survivingsjogrens.com/

Charlotte’s Life with Rheumatoid Arthritis
Hello there! My names Charlotte Stacey and i’m 17 years old! I’m just like any other 17 year old in the world, except i’m living with Rheumatoid Arthritis. This is just my blog where I like to write about the daily battle, so take a look, have a read, watch my videos and enjoy my journey!
Read More: http://charlottesrajourney.blogspot.com/

Virtual Cup of Tea
Everyone loves to sit at a kitchen table with friends & a warm cup of tea. We share stories, advice, laughter & tears. My goal here is to make this our kitchen table. A place to pull up a chair, grab your favorite mug & make some friends. Lets share experiences & advice and help one another by making life a little easier and more pleasant. Welcome to my kitchen table!
Read More: http://virtualcupoftea.blogspot.com/

More resources and blogs: www.rheumatoidarthritisguy.com/links/

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Lifestyle Changes & Eliminating The Blame Game

Earlier this year, during the midst of what has definitely been my worst flare ever, something interesting happened: I suddenly realized how much time, energy, money, and hope I was spending on my desire to make my pain go away. And even though I knew, firsthand, the ravaging effect that rheumatoid arthritis often had on my body, for the first time ever I fully recognized how determined (stubborn?) I was to not make seemingly simple accommodations that would lessen the negative impact that chronic pain and disability had on my life.

For years, I hesitated from seriously considering many options which fell under “lifestyle changes” for one main reason: by accepting that there were certain things–within my control–that I could improve through change, I felt like I was implicitly blaming myself for my illness. Yes, I had this disease, but it was this disease–and nothing that I was actually doing/not doing myself–that was causing all of my problems. Case closed. (Or so I thought.)

A few people who are close to me had previously introduced a certain question into my life, a question which I had come across myself many times while reading about chronic pain, rheumatoid arthritis, and disability: how much of my pain was caused by the disease itself, and how much of my pain was caused by my reaction to/rejection of this disease?

Once again, such a thought–at the time–only served to move me dangerously close back to the realm of self-blame. Of course *everything* that was wrong in my life, all of my pain, all of my depression, all of my financial problems, could be (and were) blamed on my rheumatoid arthritis. Just read all of the medical information sheets: chronic pain, no cure, loss of mobility, expensive medicines…and the list just goes on and on!

Fortunately, during this past year, I’ve finally opened up and have allowed myself to try to answer such a question, without feeling the need to place any blame on myself. Yes, there are many problems that result from living with an immune system gone wild…and if we’re looking for an actual cause of the pain and disability, we can go all the way down to the molecular level. I’d finally had enough of the blame game, though. I wanted solutions; I wanted a better life.

As I started looking at my life and my daily activities through this lens of trying to make things better, as opposed to through the lens of guilt and blame, I was amazed at how many evident solutions were right in front of me. Ahh…the dreaded “lifestyle changes” had finally become…well…quite liberating! (And no, they didn’t–and never will–”cure” me of my disease…but they’ve certainly made things a heck of a lot easier…and in my case, at least, they have actually helped to lessen the severity of my RA symptoms.)

And by lifestyle changes, I’m certainly not advocating for snake oil remedies. I’m talking about important changes that might seem frightening and/or impossible up until the moment they are made, but that deliver overwhelmingly positive (and obvious) results as soon as they are implemented.

Some of these changes could be “big,” such as my decision earlier this year to stop teaching at a local university. Originally I was jumping into the unknown, and had no idea how I was going to be able to support myself financially. I have since established a tutoring business that not only allows me to work from home, but that actually pays better than my previous job. And the best part of all? I no longer have to push myself to leave the house each morning, flare or no flare. By eliminating this constant stress trigger, I have achieved not only increased peace of mind but also improved health.

Some of these changes could be “small,” such as my decision to stop moving when my body is in a flare. I used to do the exact opposite, in order to prove to myself that I could indeed actually continue to move. I still remember those moments of panic, when my hands began to curl and my knees stopped working. Instead of laying down and giving my body the rest it needed, I would start pacing around the house. I’ve since learned that true victory doesn’t mean not stopping…it means accepting the need to stop when my body tells me to, and appreciating these moments of physical stillness.

I continue to spend as much time, energy, money, and hope as I previous did…but instead of working *against* something, against the presence of chronic illness and pain in my life…I now find myself working *for* something, for a future that continues to improve with each and every new day.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

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Amanda-Gibson

Amanda Gibson

Real Profiles of Rheumatoid Arthritis
Photos © Amanda Gibson

Name?

Amanda Gibson

Age?

25

Location?

Lauderdale, Minnesota, United States

How long have you lived with RA?

I was diagnosed 15 years ago, but the onset of symptoms was much younger. It could have been as early as age 2.

What advice would you give to someone who has just been diagnosed with RA?

It can seem overwhelming, and you might want to focus on the things you’re “losing” from your life. Try not to do that! Instead, take delight in the things you CAN do. Any day that you can tie your shoes or cook your food or open a soda bottle are days that you should feel like a superhero!

Do you use any mobility aids?

I don’t have any currently, but I’ve been looking into getting a cane to help with flare-ups. I’ve been falling down a lot more.

How has living with RA helped to improve your life?

As I said above, I try to take delight in the small things. It keeps me positive and upbeat. It makes me fight harder to keep the freedoms I have.

Do you have any visible signs of RA?

I have swan-necking in my hands, and my feet are hammertoed. I have scars from two different surgeries – a right wrist row carpectomy and a total joint replacement in my jaw.

Can you please describe some of your favorite coping strategies for living with RA?

When I feel down, I don’t keep it in. I turn to my friends and loved ones for comfort. They know that it’s hard on me, and they definitely try to keep me from despairing too much.

Can you please describe your current medical (traditional and alternative) treatments?

I take Enbrel and Methotrexate, as well as Advil for the pain and stiffness. I try to walk as much as possible. Swimming and massages are great too! I’ve also started float tanking, where you lie in super-salinized water. It feels amazing!

Is there anything else about yourself that you would like to share?

I’m a total nerd/geek/whatever you want to call me. If you ever want to talk about anything, find me on Twitter at @geeklygibby. You can also read my blog at http://ramandag.wordpress.com.

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BJC Health: Connecting Rheumatology Care

It’s definitely been hard work but we strongly believe that for patients with chronic rheumatic disease, optimum care can only be delivered by a coordinated, multi-disciplinary service. No one allied health professional or doctor can reasonably meet all the needs of the patient. It makes sense to team up health professionals in the same location for added convenience. This then translates to improved patient compliance and improved communication between the team members.

At BJC Health, we call this approach, Connected Care. Connected Care for better patient outcomes.

On one of my slides, I raised the question “Why Bother?”

The final word on this will go to RA Guy:

“When you live with a chronic illness like rheumatoid arthritis, going to all of your different health care appointments can easily feel like a full time job. And to make the situation even more complicated, everything is usually in a different place. You have to go one place to see your rheumatologist, another place to get physical therapy, another place to exercise, another place to get your lab work done, another place to see your psychologist, and so on, and so on.

As I commute from one place to another day after day, I often start to daydream. Wouldn’t it be nice to have all of these services in one place?”

Read More: http://bjcconnectedcare.com/2011/11/connecting-rheumatology-care/

RA Guy’s Autoimmune Wellness Center


Read More: http://www.rheumatoidarthritisguy.com/2011/07/autoimmune…

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Rheumatoid Arthritis And Dental Health

I just left my dentist’s office. After my third visit in the past six weeks, my dental hygienist finally gave me the thumbs up, and declared this cleaning to be over. When I first moved here to my little corner of South America, I was amazed that one procedure didn’t necessarily correspond to one visit; I’ve had previous cleanings that were done over a period of five sessions, and I even had one root canal that took six (one-hour!) sessions to complete. I still remember asking, nervously, how much all of this was costing me. When they told me that it wasn’t costing anything extra, that their goal was to complete each procedure until they achieved the desired results–no matter how long it took–they saw the confused look on my face, and chuckled. They were dumbfounded by my suggestion that I was being charged per visit, and asked me if anyone really charges patients in such a manner. (At that point, as I looked back on all of my medical visits while living in the United States, it was my turn to chuckle!)

Just a couple of days ago, I realized that I had not had a major flare in the past month. Of course, I stopped to wonder what, if anything, was different during the past few weeks. It’s certainly not the meds, as I’ve not taken any since early this year. The weather here in the southern hemisphere is turning warmer as we move into summer; while I know this helps we’ve also had our share of cold, rainy days during the month of November. My diet is unchanged, as are my exercise levels. The only thing that I could think of was all of this dental work that I’ve had done recently; to further bolster this theory is the fact that the exact same thing happened a couple of years ago: after what was then months of dental work (including the above-mentioned root canal,) I had an extended period where my RA symptoms were much lower than usual.

Might there be a connection between dental health and rheumatoid arthritis activity? Even though I haven’t read any of the reports in detail, over the past few years I have seen multiple headlines which referred to a connection between the two. And during the most recent Annual Scientific Meeting of the American College of Rheumatology, I did see many Tweets which talked about studies associated with periodontal disease and rheumatoid arthritis.

My dentist and my dental hygienist both know that I live with RA, and know that when I say that it’s sometimes just too painful to brush and floss, that I’m not just making up excuses. They tell me that my chronic illness is one of the reasons why they want to ensure that I achieve the best possible results during each one of my procedures. “A person’s gums are a window into a person’s immune system,” they told me during my previous visit. I had never heard such a thing…but the more I thought about it, the more sense it made.

So I’m curious: has anyone else noticed a connection between their dental health and their autoimmune arthritis activity?

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

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