Considering the flare that I’ve been in all day, I thought it would be appropriate to re-post this video that I created a while ago…enjoy!
Wow, talk about a bad flare day. I’m definitely having one today. One of the things that I wrote when I first started blogging was “12 noon is the new 8am – life with RA.” (On a side note, I think that’s the first time that I’ve put a sentence’s closing punctuation inside the quotation marks…what exactly is the rule on this? A quick online search says its a stylistic choice.) Back to the 12 noon thing, though. Today, this saying could not be more true. All morning long I’ve been thinking to myself, “man are my feet hurting!” Usually one foot hurts worse than the other, one ankle hurts worse than the other, and so on. Not today. Today, both sides are absolutely equal…and while it’s me lower body that is getting most of my attention (ever seen feet that look brighter than a tomato?), the fact of the matter is that everything hurts, from top to bottom.
I don’t find myself getting as anxious as I might have in a previous flare of this severity, which I guess is a good thing. But I do find myself once again being surprised at how much it can actually hurt. (And I’ve probably had hundreds of flares that were as bad as today’s is.) You see (and I am sure that others who live with this will know what I am talking about), there is pain that is so bad that even though it registers in the mind at the present, as soon as it passes, that same mind cannot even imagine how bad that pain was. I guess that’s why I’ve always told people that even though I can find a lot of similarity between all of my flares, each and every one of the stands out as its own singular event.
Writing about this helps. During times like these, when is feels like the whole world is shrinking down on me (I was bedridden until about 1:30pm), it’s nice to have a way of counteracting these thoughts of fear and helplessness that enter my mind. It’s scary..but right around now, I’m just a little bit less scared. And I know that I am going to be okay.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
Real Profiles of Rheumatoid ArthritisPhotos © Leslie Rott
Ann Arbor, Michigan, United States
How long have you lived with RA?
Diagnosed in 2008.
What advice would you give to someone who has just been diagnosed with RA?
I would say that it’s really important to know that RA isn’t a death sentence. And contrary to public opinion, it’s (obviously) not a disease of old age.
Do you use any mobility aids?
Most of what I use are more everyday type things like jar grippers and things like that.
How has living with RA helped to improve your life?
That which does not kill you makes you stronger. I think RA has taught me that being a one woman show isn’t enough, and that I need to surround myself with people who enrich my life in multitudinous ways. I think being impacted by any chronic illness is a test of relationships. And those that stay despite illness are the ones who are always going to be there. RA has taught me that I deserve to feel like a whole person, and that some relationships just aren’t worth salvaging.
Do you have any visible signs of RA?
RA has done a number on my toes, but I try to keep those hidden. My right hip is also a bit deformed, but it’s not like I whip my hip out for everyone to see.
Can you please describe some of your favorite coping strategies for living with RA?
For me, one of the best ways to cope has been through blogging. The online lupus and RA communities, along with the chronic illness community in general, have been immensely helpful for me.
Can you please describe your current medical (traditional and alternative) treatments?
Currently I am on Centrum, Flexeril. Folic Acid, Lo-ovral, Methotrexate, Quinacrine, and Seroquel. I am also on Prednisone on an “as needed” basis. My treatments have mainly focused on the more “traditional” medicine side of things.
Is there anything else about yourself that you would like to share?
By Irwin Lim, Rheumatologist
At BJC Health, we spend a lot of time educating patients about their disease. In particular, we spend a lot of time at the time of diagnosis.
For a person living with a chronic disease like rheumatoid arthritis, understanding the consequences of the disease and what the body is going through is crucial in coping. From a rheumatologist’s point of view, it’s also crucial that a patient understands the need for appropriate treatment to avoid the dreadful consequences of the disease.
A couple of weeks ago, I stumbled onto Rheumatoid Arthritis Guy’s website…This superhero has created a guide on rheumatoid arthritis…I like it a lot & feel it may help my patients understand. What do you think?
NSW Australia – Our unique approach, Connected Care, is about honing the collective expertise of our specialists and allied health professionals to offer holistic diagnosis and treatment.
This approach has come about because our main objective has always been to treat the whole person, not just the site of pain. We achieve this by encouraging our specialists and allied health professionals to work together in connecting the treatment of our clients’ health issues where appropriate.
Each practitioner here is highly trained and adept at his or her own expertise but we have the understanding as well as the ability to integrate care from different experts if required. The benefits of having a well-connected in-house team of health practitioners are invaluable. Aside from client convenience and a more streamlined administration of your overall health, Connected Care allows us to address your health and well-being holistically.
More Info: http://bjcconnectedcare.com/
Living With RA Makes Me Strong
RA Guy on February 1st, 2010
Living with rheumatoid arthritis can, at times, be a lonely experience. Though I continually try to share with those around me what I am going through, words alone will never be able to accurately describe the pain that this disease brings into my life. The erratic nature of this illness also makes it difficult for some people to understand the seriousness of my situation. If I put myself in their shoes, I can begin to see why. After all, if someone sees me walking around with relative ease during the afternoon, it might be easy to dismiss the challenges that I encountered earlier that day, when I was unable to get out of bed due to pain and stiffness in my joints.
- People Magazine: Megan Park: Living With Rheumatoid Arthritis Has Made Me ‘More Empathetic’ As An ActorJune 5, 2015 - 10:30 am
- 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