Real Profiles of Rheumatoid ArthritisPhotos © Krystle Smith
Massillon, Ohio, United States
How long have you lived with RA?
I’ve been battling RA for 25 years. I was one of the youngest patients to ever be diagnosed in the northern Ohio area (at 9 months old). Luckily, I’ve had an amazing support system to stand beside me through all the trials and hard times that have been sent my way because of RA.
What advice would you give to someone who has just been diagnosed with RA?
The best advice I ever received was to try to stay as active and as positive as possible, even when it feels completely impossible. My parents always tried to provide me with as normal of a childhood as possible, and although I knew I was different from other kids my age I never felt out of place. However, there were many times when I felt alone and would question God’s reasoning behind all my health complications. Connecting with other RA warriors has been a great help for me. I no longer feel alone and love talking to people who actually understand. I would tell anyone who has been newly diagnosed to keep that positive attitude and connect with other people who have the disease because unfortunately, most people don’t understand the disease unless they have personally dealt with it. I’ve tried many times to explain what is happening to my body to my friends, but some of them just don’t get it. Hearing the word “arthritis” is completely deceiving when it comes to RA. I don’t think anyone realizes just how much of a person’s life the disease impacts.
Do you use any mobility aids?
When I was younger, my biggest problem joints were my knees and wrists. My knees were locked at 90 degree angles and my family was told I would never walk again. I slept in leg braces every night and fortunately I am able to walk.
How has living with RA helped to improve your life?
Although sometimes I feel like my younger years were stolen from me, I try to stay appreciative of the things I do have and the things that I can do. I know that for me, this has litereally been a lifetime illness but God has a reason and a plan for me-I hope I can figure out exactly what that is sooner than later.
Do you have any visible signs of RA?
I have visible contractions of my wrists and they are stuck in one position. This makes it very difficult to do simple things like open bottles, to cut vegetables. As I’ve gotten older my neck, back and elbows have become more and more bothersome.
Can you please describe some of your favorite coping strategies for living with RA?
I try to count my blessings and remind myself that things could always be worse-but having an understanding support system has made the biggest difference in coping with RA.
Can you please describe your current medical (traditional and alternative) treatments?
My current treatment consists of Enbrel injections, plaquenil, steroids & lots of vitamins to boost my immune system & treatment really takes a toll on my body. Because I haven’t seen much improvement, my meds will be changing once again.
Is there anything else about yourself that you would like to share?
I have days where I literally cannot turn my head. I was also told I have visible bone thinning (osteoarthritis) now on top of everything else.
Come along on my journey as I live life artfully while battling chronic pain and illness due to a chronic inflammatory disease called Ankylosing Spondylitis. I write authentically about the challenges of inflammatory arthritis and how I am learning to rise above them with chronic gratitude. I also write about motherhood, faith, loss and healing, and art and creativity.
Read More: http://livelifeartfully.blogspot.com/
On the Ground
30 year old female, now working a ‘real’ office job. I spent my late teens and 20′s training and riding everything from GP jumpers to AQHA halter horses. Quit riding professionally in 2005 due to Rheumatoid arthritis (RA), but have started re-riding and showed AQHA on my HUS gelding in 2010, Lucas. Recently sold Lucas, and dealing with progressing RA, while still trying to stay involved with horses.
Read More: http://justaplainsam.blogspot.ca/
My RA Diary
My perception of life has also changed since. I now cherish every little moment of my life with family and with life, as unpredictable as it can be, I want to share my knowledge, honest experiences and thoughts, inspirations, motivations as well as any bits and pieces about improving life with RA. Regardless if a ‘cure’ is even possible with RA, my goal of recovery is a total remission! And I strongly believe I am closer to this goal every day I live here-forth…
Read More: http://www.myradiary.com/
The Girl With Arthritis
Hello! I’m Elizabeth. I have a friend named Arthur. Juvenile Psoriatic Arthritis, is his full name. I’m a teenager aspiring to be an artist who is just trying to get by day to day without too much pain. I want to help other kids and adults with arthritis reach out and feel accepted.
Read More: http://arthritisgirl.blogspot.com/
Dancing in the Rain
It’s not about waiting for the storm to pass, it’s about learning to dance in the “RAin” when you live with Rheumatoid Arthritis and other Autoimmune Diseases.
Read More: http://idanceintherain.com/
Then one day it dawned on me,“why don’t I start up my own blog and document my arthritis journey?!” Writing this blog is not only my way of getting things off my chest when I am feeling particularly frustrated, but it could help another young person in the way I was hoping for myself a few months ago.
Read More: http://porcelaindoll-xo.blogspot.co.uk/
More resources and blogs: www.rheumatoidarthritisguy.com/links/
At the start of this New Year, I find myself writing to you on a very personal note.
As many people who follow my blog and my Facebook page know, even as I continue to improve my ability to manage and cope with the challenges of living with the pain and disability, my rheumatoid arthritis continues to progress. While I have surrounded myself with some of the most caring health care professionals that one could imagine, including but not limited to my rheumatologist who made a house call this past Sunday, my current treatment options are no longer proving to be as effective as they once used to be.
My personal situation is further complicated by the fact that treatment options are quite limited in the country where I reside part of the year. In order gain access to any of the newer treatments, I must travel to and explore options either in other countries here in South America, or in my home country of the United States. Once you add in my very limited financial resources that result from my inability to maintain gainful employment, it is quite easy to understand the magnitude of this challenge that I currently face. (I did apply for Social Security Disability benefits more than three years ago; I have been denied twice and am currently in my third appeals process.)
Over the past couple of days, I have made this promise to myself: one of my top priorities in the coming weeks and months is going to do everything with my control to gain access to the health care and treatment options that I so very need. I am asking you to please help me achieve this goal. I am not asking for money. I am only asking for five minutes of your time. I will soon be submitting financial assistance applications to various well-known medical institutions within the United States, and want to guarantee (as much as possible) that my applications get noticed!
Here is how you can help me:
• Write a brief character reference letter (1-2 paragraphs, guidelines/hints included in first comment below.)
• Sign your letter with your name and country of residence. (Complete address is not required.)
• Email your letter to firstname.lastname@example.org
• Please note, these letters will be attached to the financial assistance applications that I submit. They will not be shared in any other manner.
I hope to start submitting some of these applications as early as the end of this month. If you could please send in any letters of support before January 25, 2013 this would be greatly appreciated.
Thank you so much for your friendship, help, and support. I wish each and every one of you a very happy and healthy New Year!
THE BEST OF 2012
Our Hand Can! Photo Book
Walking Across the Brooklyn Bridge
RA Guy Sculpture
Meeting–In Person–Some of the Supportive People Who Read My Blog
Show Us Your Hands!
More Info: www.showusyourhands.org
THE WORST OF 2012
Cease and Desist Letter
Thanks to each and every person who helped make 2012 a wonderful year here on Rheumatoid Arthritis Guy!
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
Right around this time of year, it’s customary to start sharing our resolutions for the New Year; those things that we’ve been wanting to accomplish but have not done so far. In this blog post, as 2012 comes to a close, I’m not going to be sharing any new resolutions. Instead, I am going to affirm the things that have worked for me so well, up until now.
This isn’t just some trendy term from the Harvard Business Review. For me, it’s become an integral part of my life, and has actually become somewhat of a miracle worker. You see, most of us are familiar with the aspect of disappointment that results from not having achieved what we had hoped to, but I think what exactly we hope for is a part of the equation that often goes less unnoticed. Now, I’m certainly not advocating for losing hope or for lowering one’s expectations…in fact, what I would advise is the exact opposite. It is absolutely essential, however, to not only set realistic expectations, but to set expectations which are in line with one’s own capabilities. If I wake up thinking I’m going to accomplish ten things on my to-do list, chances are I’m going to be disappointed. While it might be possible to accomplish five to seven things, I’m probably going to finish in a worst state than which I started. Figuring out the two or three things I want to do, and doing them well, it going to increase my chances of being able to do the same tomorrow, and the day after that, and the day after that, and so on. (And on those days when my list of accomplishments is limited to getting out of bed, taking a bath, grooming myself, and getting back in bed, I do indeed feel a sense of complete success. What’s the use of burdening myself with thoughts of failure?)
Think Before You React
Writing this blog has exposed me to a wide range of different ways of thinking, which I absolutely love. It has also brought me into contact with some individuals who, for one reason or another, vehemently disagree with the way I cope with my rheumatoid arthritis, and who feel the need to tell me as much in words that are not always kind, respectful, or polite. As a normal human being, I must admit that these messages sometimes make me feel defensive; they sometimes make me feel like I personally am being attacked. After a long discussion with my dental hygienist last week (I love that I have ended up with so many multi-functional healthcare professionals in my life!), I finally came to accept (even though many friends have told me the same over the past few years) that such messages had nothing to do with me, and had everything to do with the person on the other end. So I’ve promised myself that anytime I receive such a message in the future, in addition to following the non-engagement policy that has served me so well to date, I will not only not internalize the unhappiness that is being transmitted in such messages, but I will externalize positive energy, in the hopes that *all* of us find peace in the challenges we encounter.
Help Yourself By Helping Others
I always grew up being told that no matter how little we might have, we always had more than many others. As such, we needed to learn how to share, and how to help others. Now that I live in one of the poorest countries of South America, this lesson continues to be driven home. While I’m relatively poor compared to my friends and family in the United States and other parts of the worlds, I’m considered by many to be well-off here where I live. (It’s part of this dichotomy that can be confusing at times; while I am unable to afford healthcare in the U.S. I am able to afford 100% out-of-pocket private healthcare here.) My intent, however, is not to focus on the financial aspect of helping others (even though I have been the recipient of such help many times, and can attest to the huge difference it can to a person who is being forced to decide between medicines, utilities, and groceries). Helping someone else just makes you feel good, and who wouldn’t want that? Most importantly, helping others helps stop in its tracks any feelings of victim-hood. It also does double-duty, as when I am down in the ruts, helping others serves as a reminder of how much I can actually help myself.
Don’t Try To Control That Which Is Outside Of Your Control
(Don’t you just love how some of the most life-transforming beliefs are so simple, yet so absolutely difficult to fully accept and achieve?) Years ago, when I was not keeping up with the challenges of living with rheumatoid arthritis, a close family member would repeatedly tell me: you may not be able to control your pain, but you can control how you react to it. This was not something that I was told just one time, or even a dozen of times. It was something that I heard over and over and over again. With time, it slowly started to sink in, until it eventually became one of the first thoughts that would enter my mind during times of crisis. (Thus pushing aside thoughts such as I can’t deal with this anymore, or what will I do if the pain gets worse?) These words continue to remind me that no matter how much pain I might be in, no matter how upside-down (throw in a few more dimensions and then you might be able to really understand what it feels like) my world might seem at times, one thing will continue to remain unchanged: I am in control of my thoughts. And being in control of my thoughts, especially during times of crisis, is a true gift that I can apply to so many aspects of my life beyond just the chronic illness.
Just as every day is a new opportunity to learn how to best move through this journey called life, so to is every new flare a chance to figure out how to better cope with the pain and disability. Adopting this attitude also goes a long way in removing the fear that I thought was inherent in my future with rheumatoid arthritis. I no longer dread the next flare, the next morning that I’m stuck in bed and cannot even roll over, or the next time that I am completely unable to use my hands. I can’t necessarily claim that I will ever look forward to such items, but I can say that I really do look forward to the opportunity to learn something new when I find myself in one of these situations. I have found that as my rheumatoid arthritis continues to progress, such a way of thinking is absolutely critical. Yes, the pain and the disability continue to present greater challenges…but I am confident that by continuing to build upon what I already have learned, I will continue to be able to meet the challenges that are placed in my path.
Here’s wishing everyone a wonderful 2013!
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!