Real Profiles of Rheumatoid ArthritisPhotos © Megan G.
Ottawa, Ontario, Canada.
How long have you lived with RA?
Diagnosed at 16, in 1991, so 20 years.
What advice would you give to someone who has just been diagnosed with RA?
Listen to your doctor and listen to your gut feeling. Your doctor knows RA, and you know yourself. Advocate for yourself. If something isn’t working with your meds or a test result doesn’t make sense, ask and ask again. Take the meds your doctor prescribes, and then determine if they work for you. Life is too short to live in significant pain. Find support in your community or the Blogging community. You are not alone, and there are others out there offering support and understanding. Talk to your family and friends. Let them in. Help them understand your struggles and let them know when and how they can help. Ask for help. I’m still trying to improve in this area. Talk to your manager at work. My experience is that it has only been positive and helpful.
Do you use any mobility aids?
I occasionally use both working and resting wrist splints and I haveused a cane (a long time ago), but recently it is looking pretty attractive.
How has living with RA helped to improve your life?
Some days, I can’t see that it has improved my life. Other days, I know that I am a stronger person. I don’t take things lying down. I am a fighter. I am not afraid to ask questions of my doctors and treat them as equals. I am more empathetic. I am a better planner. I am less fearful of the unknown. I am more patient with myself and others. I am more humble. I know myself well.
Do you have any visible signs of RA?
A six inch scar on my left shoulder from my joint replacement from 2009. Soon to be scar on on my right shoulder to match. Two-one inch scars on my right knee from an arthroscopic synovectomy in 1999. Prednisone “hump” on the back of my neck. Ulnar drift in both hands.
Can you please describe some of your favorite coping strategies for living with RA?
I walk on the Trans Canada trail and listen to music. I sing at the top of my lungs when driving. I blog – which has been one of the biggest outlets for me recently. I talk issues over with my husband and or family and friends. My Yoga practice has helped, but I seem to be able to do less and less of it due to my shoulders.
Can you please describe your current medical (traditional and alternative) treatments?
Meds: Actemra – about to start, Prednisone, alternate day low dose. Diclofenac, daily. Actonel, monthly to prevent bone loss.
Pills: Multi-vitamin, daily. Vitamin D & E, daily.
Other Treatments: Massage therapy. Acupuncture (at times). Naturopathic Doctor, with some success.
Is there anything else about yourself that you would like to share?
I am married to a wonderfully supportive husband. He has been known to put my hair in a pony tail and help me get dressed when I can’t manage alone. I am a mom of two funny and beautiful children, ages 4 and 6. They have a world view that is very simple, showing me that life doesn’t need to be complicated. I have amazing parents. They are here for me, all the time, no questions. I blog about my RA life (Sticks & Stones) as a therapeutic and documentation exercise, and to connect with the online RA community.
By taking lists of potential side effects out of the hands of the drug makers, the startup is letting people know what their pills might be doing to them in a more open way than big pharmaceutical companies ever have.
AdverseEvents, a California-based startup, is pushing the debate out into the open with a centralized database of how many side effects are happening from what drugs and what the patient outcomes are–and according to cofounder Brian Overstreet, “it scares the crap out of the pharmaceutical companies.”
“The FDA has some of this [side effect] data, but it’s unstructured, not searchable, and not standardized,” explains Overstreet. AdverseEvent’s proprietary algorithm, which took 18 months to build, takes into account data from the FDA, direct patient reporting, and even information from social media sites (AdverseEvents analysts are alerted to side effect discussions on patient discussion boards, for example, and try to extract data).
AdverseEvents, Inc. (AEI) is the first service provider to deliver accurate, real-time information on adverse drug events reported to the FDA. AEI utilizes a unique data sourcing method called RxFilter™, a proprietary 17-step data refinement process that standardizes and normalizes the data from the FDA’s Adverse Event Reporting System (AERS) into a user-friendly, fully searchable, database of over 4,000 approved medications.
More Info: http://adverseevents.com/
Dance Shoes And Pill Bottles
A little bit about me…I’m an 18 year old college student with Rheumatoid Arthritis. I was diagnosed with JRA when I was 6, went into remission at one point, and now it seems that my RA is coming back with a vengeance. I’m a dance major and a dance teacher which most of the time doesn’t agree with RA but I love it so much that I’m going to do it as long as my body lets me.
Read More: http://dancemajorwitharthritis.wordpress.com/
Life And Times With Art
Every day, every decision I make has an effect. I have rheumatoid arthritis in all my joints. This chronic condition defines who I am today, yesterday and tomorrow. It has defined me for 33 years. My sparring buddy is called, Art. He is not my enemy, nor my friend. Sometimes he wins. Sometimes I win. But I will not let him bring me undone. He may just well bring me down some days, but he will not bring me undone. This is my story … and I guess Art’s as well.
Read More: http://lifeandtimeswithart.wordpress.com/
It’s My R.A. And I’ll Cry If I Want To!
I’m a 26-year-old, currently living with Rheumatoid Arthritis. It’s turned my world upside down, and this is my journey of trying to get it right side up again. The good. The bad. The ugly. And of course, the pretty.
Read More: http://julitaylor.blogspot.com/
I’m a life explorer, the crazy one, the fearless one, ready to jump into a new life at the drop of a hat-so many unbelievable stories in one short time span. At last count I’ve lived in 77 different places, and not yet ready to settle down! If you are reading my blog- please know upfront that I am not filtering my emotions at all- this is a therapeutic blog for me, so expect raw honesty, politically incorrect sarcasm, cutting humor and ANGER without limits.
Read More: http://www.raredhead.com/
Hi! My name is Jeanine. I am 28 years old and was diagnosed with psoriatic arthritis in 2010. I have labeled myself a PA warrior because I refuse to be a victim, sufferer, or whatever depressing word other people want to label me. I know nothing about blogging but I have started one of my own for a few reasons.
Read More: http://fightingpsoriaticarthritis.blogspot.com/
More resources and blogs: www.rheumatoidarthritisguy.com/links/
“My name is ‘With RA’ – ‘Thrive With RA™.’ This James Bond-like introduction is offered in jest; however, using my Rheumatoid Arthritis Community Name as my identifier – a pseudonym – is entirely serious, out of necessity of preservation. The need for this anonymity is because I am a Severe Rheumatoid Arthritis Patient, am still employed, receive health insurance from my employer, want to preserve the option to cultivate opportunities for employment without prejudice and maintain my health care economically. I am not the only person that has chosen this route. Sadly, there are many suffering from illness in the world who also lead a ‘covert op’ as part of their lifestyle every day. It’s not being disingenuous or untrue to oneself, but rather, a necessary method in the madness that is the reality of dealing with injustice against those living with illness of any kind, or disability.”
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