Real Profiles of Rheumatoid ArthritisPhotos © Brad Carlson
I am 46 years old.
My wife and I live in Myrtle Beach, South Carolina, United States.
How long have you lived with RA?
I have had severe pain on and off for at least 7 years. I went to Orthopaedic docs, Podiatrists, GPs, and was always told I had OA or it was just from working too much. I used to be a store manager for a department store chain. I once wore surgical boots for 8 weeks to “stabilize” my feet. I was always given a brace and some pai meds and sent on my way. Two years ago I awoke to my wrists swollen to twice their size. I went to the ER and was put in a cast and referred to a orthopedic doctor yet again. This time I was put through a battery of bloodwork, xrays and mris, then referred to a Rhuematologist. I finally had a dx! RA, PA, Sjogrens and Psoriasis. Since then I have also developed Diabetes from the high dose of Pred I am on as well as Addisons. I also have high BP, and COPD.
What advice would you give to someone who has just been diagnosed with RA?
To someone newly diagnosed I would say that knowledge and support are everything. Make sure you are getting answers to the questions you have from your doctor. Research the internet and join support groups. You can feel VERY alone when you get a dx like this, it effectively changes your life, like it or not. You are not alone, there are many people out there in the same boat as you. Connect with them and share your fears, your knowledge, just connect, it will help a great deal. Get copies of your blood-work and research those as well, I wanted to know all there was to know about what I had, it made it easier to cope with. Depression is very common for people with autoimmune diseases, do not try to just block your feelings, If you think you are depressed, talk to your doctor. I take Zoloft myself for depression.
Do you use any mobility aids?
I use canes in my woodshop, forearm crutches in the house and a Power Wheelchair for any sort of distance or going outside. I had special shoes made by an orthotic doc that fit my feet exactly. I use Knorks (half knife, half fork) and wide handled cooking instruments. I have several pick up tools and aids for getting dressed. I have hand braces to stop my fingers from curling up at night. I also have a recliner that will stand me up when I need to get up. If it helps, USE it! Parking placards, wheelchairs, power chairs or scooters may seem an embarrassment to use. Once you find how much pain they will save you, you will not think twice about using them!
How has living with RA helped to improve your life?
I would say living with RA positively affected my life by slowing me down. I worked 80 hr weeks and commuted 3 hrs round trip a day. I am now on Long Term Disability and SSDI. My wife and I spend much more time together, and I have learned to appreciate the small things in life much more. I have also found many great people online through Rhuemamisfits and My RA central that have become great friends.
Do you have any visible signs of RA?
My hands are always swollen, red and several fingers are twisting. My ankles and feet are constantly swollen and red, and my feet are twisting sideways. I continue to find ways to do the things I love to do. RA will change you, but it doesn’t have to stop you!
Can you please describe some of your favorite coping strategies for living with RA?
My coping strategies, I pray. That always helps, God will not give you more than you can deal with. I also use online support groups, Rhuemamisfits, RA Central, etc. They can really help you to vent and to reach out to help others in the same situation. I also recently became a contributor for RA Central. Putting my experience to work to help others with this disease gives me a sense of purpose that I really needed.
Can you please describe your current medical (traditional and alternative) treatments?
Medical Treatments. I take Orencia once a month, Arava, Salagen, Morphine Sulphate, Oxycodone, Prednisone, Glucophage, Glucotrol, Potassium, Vit D3, Lipitor, Zoloft and a host of other meds. I also take OTC Folic Acid and Omega 3.
Is there anything else about yourself that you would like to share?
I have been an avid woodworker for over 20 years, and while I cannot do work like I once did, I am teaching myself to do small projects again. Currently I enjoy making simple toys for the neighborhood kids! Don’t give up on your life, find ways around the pain and keep yourself up!
We all hurt in some form or fashion, but without hope the pain wins….I am hurting, but I am also hopeful!
I am a mother and wife first, and a patient with Ankylosing Spondylitis second. Even though I have AS it doesn’t have me and I am very blessed. The Lord has given me so many wonderful things in my life, so the positive definitely outweighs the negative! I have a wonderful husband, who is also my soul-mate and best friend of 13 years (we got married at 19!), and two gorgeous kids. I lost my mother to breast cancer in 2000, when she was 45. I miss her so much, and to add to the loss, both my husbands parents passed away recently as well. It is hard raising two kids, while having a disability, and while not having a large family for support. I am blessed to have my father here with us, and he is a wonderful grandfather to my babies. After I was diagnosed with Ankylosing Spondylitis I felt like I had finally found my purpose on Earth…I was meant to be an AS advocate, and I take that very seriously. I hope I can not only teach the world what living with AS is about, but I hope I can help others like me deal with the toll it takes on not only our bodies, but our souls. So with this blog, I hope you can get to know me, my goals, and more about AS. Thanks for reading, and please feel free to leave feedback, good or bad!
Read More: http://hurtingbuthopeful.wordpress.com/
ASAP: Ankylosing Spondylitis Awareness Project
The Problem: Most people have never heard of ankylosing spondylitis. Unfortunately, medical professionals and researchers are no exception. This is surprising because a relatively large number of people, estimated to be between 1 to 2% of the general population, are afflicted with this disease. That means that for every 100 Facebook friends you have, odds are that one or two is a spondylitis patient. It is NOT a rare disease. Its prevalence is similar to that of rheumatoid arthritis. As of December 2009 only 23 active grants funded by the National Institutes of Health (NIH) are related to ankylosing spondylitis. This is 10 to 40 TIMES less than diseases with similar prevalence. For example, there are currently 774 grants that fund research into rheumatoid arthritis. To make matters worse, the NIH has released only one request for applications to promote research into the pathogenesis of ankylosing spondylitis since 1992.
So why is there so little interest and support for ankylosing spondylitis in the research community? We believe it is a problem of awareness. Ankylosing spondylitis is a chronic degenerative illness that deserves the attention of the research community and funding agencies. More researchers need to be recruited to the cause. Medical doctors need to be educated in the latest research findings in order to make more informed treatment decisions and more accurate diagnoses. Patients and families need to learn to cope with the lifelong impacts of this disease. We are hurting, we need to hold on to the hope that a cure may yet be found in our lifetime.
Our Strategy: We are an online community of AS patients, family members, and friends. We propose to carry out a variety of group awareness projects to help raise the level of visibility and awareness of AS in both the general public and the medical community.
The Spondylitis Association of America was founded in 1983 by people affected by ankylosing spondylitis, a crippling form of spinal arthritis that strikes young people. Prior to that time, there was no support network, no resource for educational materials, not even a single pamphlet for people diagnosed with the disease. SAA was the first and remains the largest resource in the United States for people seeking information on AS and related diseases. Our mission is to be a leader in the quest to cure AS and related diseases, and to empower those affected to live life to the fullest.
There are more than 100 types of arthritis. For over 25 years, SAA has focused on just one – yours. So that no one has to face spondylitis alone.
More Info: http://www.spondylitis.org/
A little under two years ago, I was in an extended flare that lasted months. During this difficult time, my mother traveled from Texas to South America in order to visit me and spend some time here at my house. My blog was just a few months old at that time, and I asked her to write a post.
Voices OF RA: The Mom
RA Guy on September 1st, 2009
I am at the half-way point of my month-long visit with my son, RA Guy.
My husband and I live in a different continent than our son so the only methods of keeping in touch with him are through phone calls and/or emails. Although, I must say that since he moved here about 7 years ago we’ve been fortunate in that we’ve managed to see one another on numerous occasions during each passing year – he’s either visited us at our home in Texas or we’ve met in the San Francisco area, we were together at our daughter’s wedding in Missouri, we visited him here a few years ago, and once we even met up in Paris, France for a vacation. I was so glad when he started his blog because it offered me a way of daily keeping informed of his rheumatoid arthritis.
I am a young women who has had the pleasure of living Rheumatoid Arthritis for the past 10 years. Before the onset of my illness, I was living a fabulous life, working a fast pace job with huge advancement opportunities, married, dressing in sassy outfits, sexy shoes and doing whatever I wanted, when I wanted. My favorite pass time was shopping, hanging out with the girls and getting out enjoying life. Then it hit me, and over the years it hit harder and harder. Eventually, I was no longer on my own time, I was on my body’s time. The outfits became less sassy and the shoes were nowhere near sexy..lol I had to stop working, more and more of my income had to go to medication/treatments, and the bed became a big part of my life.
Read More: http://fabulousandsick.wordpress.com/
Fighting the Invisible
This is my story about fighting an invisible illness. I was diagnosed with Rheumatoid Arthritis in March 2011, so this is a whole new scary experience for me. One that I’m going to share with the world…
Read More: http://fightingtheinvisible.blogspot.com/
My name is Shannan. I am 26 yrs old. I currently live in NYC and am entering my last year of graduate school for my masters in social work. I work full-time at an agency providing services for babies with developmental delays. I am also planning a wedding to take place in the Summer of 2012. My fiance is amazing and although he doesn’t always know how to “help” me with my many pains, RA symptoms, fatigue moments and general moodiness, he tries his best and really that is all I can ask. I am at a point in my life where I can go many different directions, but rheumatoid arthritis, fibromyalgia, chronic pain & fatigue are always having to be considered. This blog will document my struggles and successes (hopefully more of the latter) as I navigate my later 20′s as a student, employee, friend, daughter, animal mommy and future newlywed…and all the “fun” that comes along with that.
Read More: http://shannano.wordpress.com/
Bilateral Hip Replacement
I am 33 years old and received bilateral hip replacement surgery on 8th April 2011. Technically it’s really a Birmingham Mid Head Resection. (The McMinn Centre has some awesome info about the procedure) The decision to do this now rather than in a few years time took some time, consideration and a lot of research. There aren’t too many personal stories out there and there are a lot of people like me – so I have decided to share the journey in the hope that it’s useful to someone else.
Read More: http://bilateralhipreplacement.blogspot.com/
Luke’s JIA Journey
It’s hard to believe that it has been almost a year since this disease entered our lives. I started keeping a journal because I wanted to be able to look back and see all that Luke has been through. It has also helped me to keep track of the information that the doctors have given us, medications and tests. So here is our journey thus far.
Read More: http://lukesjia.blogspot.com/
This got me thinking (you have now entered a field of land mines). Why don’t we have more creative ra wear.
I am not talking clothing but rather things I have been forced to use in my ra world on a daily basis that to put it bluntly look dreadful! No wonder we get discouraged living with RA. I mean, look at this thing! Dreadful…just dreadful! And here is my hate list: hand splints, elbow wraps and knee wraps (canes do have a lovely, wide variety to choose from). I would love to see some creative type out there invent a hand splint that I can “art” up if I desire. Heck I would be happy to be able to pick a color besides black or maybe white (I think one manufacturer makes it in white). What about blue, pink, purple, polka dots, stripes or anything I fancy.
I recently came across LemonAid Crutches, which seems to be doing something similar to that which you write about — they work just with crutches, though. Yes, canes we do have…and I’ve recently made it no secret that I want a Dr. House cane!
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