search this site

 

 

 

 

the sixty-four colors book
is now for sale!

++++++++++++++++++

Unless otherwise stated, all words and photos on this blog are by me. If you use a photo of mine, please link back to this site to provide credit. Please do not copy and re-post the text of this blog without my written persmission.

This is a for profit blog. Some links on this blog and my other social media sites are affiliate links, which means I like a product enough to share & recommend it. If you purchase a product through an affiliate link, I receive a small commission. The opinions expressed here & on all my other sites are always my own.

+++++++++

header font is 'asterism' by molly jacques erickson

Tuesday
Oct292013

Ainslie

Name: Ainslie
Location: Nutley, NJ
Age: 29
Diagnosed with Rheumatoid Arthritis at age 26


+++++++

 

1. How has your condition affected you?  Living with RA has impacted my life in many ways, both positive and negative. While I have had to give up some things that I used to love to do, I have gained a greater appreciation of myself and respect for my body. I am much more attune to my body, I eat healthy, and I maintain an active lifestyle though I am conscious of my limits. I have met some amazing people and made some wonderful friends through RA. I have become connected to the RA world here in New York and I try to stay informed and keep up with research, news, and treatment options. I am also not shy about talking about my condition and I have taken several opportunities, both formally and informally, to be an ambassador for RA. I feel that the more I talk about my experience and share my RA story, the more people will be aware of RA and the realities of autoimmune diseases.

 

2. What would you like for other people to know about your condition?  One of the biggest challenges of an autoimmune disease is that it is an invisible illness. While I look young and healthy, I am not always able to do things. It is especially difficult living in a fast-paced and aggressive city like New York. Having RA has made me much more aware of invisible illnesses and I try to be conscientious of those around me. Certainly for me the worst thing is being bumped or jostled on the crowded sidewalks. There have been times when I have been hit with a purse or a passing shoulder and this has sent me into a flare that can last several days. I always try to be aware of those around me because, aside from my own protection, every fifth person is dealing with some form of arthritis.

 

3. What would you like to tell someone who is recently diagnosed with your condition?

It gets better. Trust me.


I lived with symptoms of RA for about six years before I was finally diagnosed. I had X-rays, tried insoles in my shoes, saw different doctors until I finally met a doctor who truly listened to me. When she said to me, "I know what this is and I am going to help you" it was such a turning point in my life, a glimmer of light at the end of a long, dark tunnel. Getting that diagnosis really gave me hope. Knowing what it was that I was dealing with allowed me and my doctor to establish a course of treatment and work towards our goal of getting me back on my feet – literally and figuratively. Many people say that being diagnosed was a terrifying moment for them. But for me it was hopeful and almost liberating. 

In terms of treatment, be sure to consider all of your options and don't be afraid to try new things. There are so many options available – both drug treatments and natural supplemental options – and so it is possible to maintain a life with RA that is free of disability and joint deformity. It is very important to establish a balanced course of treatment, so find the right drug cocktail and combine that with eating well, seeing your rheumatologist regularly, and then stay active and just keep moving!

 

Always remember that RA, or any chronic illness, does not define you but becomes a part of who you are. Once you can accept it for what it is, you will be able to move forward and learn to live with it. 

 

Thanks so much Ainslie!!

Tuesday
Sep032013

RA Guy

Name: RA Guy

Location: United States and Bolivia, South America

Age: 40

Diagnosed with rheumatoid arthritis at age 32. (Symptoms started at age 29.)

 

+++++++


How has your condition affected you? I'm at a good place right now, and can definitely say that my condition has changed me for the better...although this hasn't always been the case. I've learned the beauty of slowing down, of going out to breathe fresh air, and of taking nothing for granted. I've also learned that so many people are there to help me and support me when I need it, and that counts for a lot. I'm in no way trying to underestimate the effect that the pain and disability has had on my life, which has been serious indeed...but as with anything else, it comes down to staying positive, and focusing on what I can control. I used to yearn for the life I might have had, had it not been for my rheumatoid arthritis...but I've since learned to appreciate the stronger person that I've become due to the health challenges that I face on a regular basis, and wouldn't change a thing.

 

What would you like for other people to know about your condition? I'm not a patient who suffers from rheumatoid arthritis. I'm a person who LIVES with rheumatoid arthritis.

 

What would you like to tell someone who is recently diagnosed with your condition? Things will definitely change more than you can imagine, and the pain will always be there...but with the right mindset and continued movement, there is a way to continue to live a happy and productive life. Use every challenge you encounter as an opportunity to learn something new about yourself. And always, always, always look on the bright side of things. It may not be easy, but it will be possible.

 

RA Guy’s Favorite Quote: "Go confidently in the direction of your dreams. Live the life you have imagined." -Henry David Thoreau

 

RA Guy’s Blog: www.rheumatoidarthritisguy.com

Monday
Oct152012

Megan

Name: Megan

Location: Ottawa, ON

Age: 37

Diagnosed with Juvenile Rheumatoid Arthritis at age 16

*******

How has your condition affected you? Significantly and every day would describe how I have been impacted by my RA. I have had a knee scope and two shoulder replacements. My shoulder disintegrated before my eyes, and I now beep going through airports. A couple of sentences cannot do justice to the impact joint replacement has had on my life.

There hasn't been a day in my 21 years living with it that I haven't thought about my RA. Can I do this? How much energy do I have? How sore will I be tomorrow? What is the tradeoff? It's only now that I have finally found a drug that works for me, am I thinking less about what I can do and focusing more on just doing it. It's a different struggle, and I am happier to face these challenges. But I still think about my RA every day.

What would you like for other people to know about your condition? Living with a chronic disease is a roller coaster. From one hour, day, year to the next. My emotions have ranged from rage to despair, hope to fear, joy to misery, jealousy to confident, exhausted to elated. It is emotionally and physically exhausting to have a chronic disease. My ability to care for myself and others has ranged from not being able to dress myself, comb my hair or walk to school, to being able to run a 5K race with energy and smiles to spare. I have learned, rather painfully, that there are limits your body puts on you, and there are limits you put on yourself. Only time, trial and error will help align what you want to do with what your body is willing or able to do.

What would you like to tell someone who is recently diagnosed with RA/JRA? Reach out and connect - - there are others in your local community and online who truly understand your struggles and triumphs. I took a longer road reaching out to the RA community, but I have felt nothing but support from everyone I know in the online community. Trust your doctors and follow your treatment  plan - to start. Over time, you will come to know your disease better and be able to make more informed choices based on what is best for you. Research your disease, learn everything you can - be an expert so you can educate others. Eat well and get lots of sleep. Share your struggles with others - family and friends want to help, they just need you to articulate what you need.

Megan's favorite quote: "What doesn't kill you, makes you stronger."

Megan's blog: http://sticks-and-stones-blog.blogspot.ca/

Thank you so much for sharing your story, Megan!

Tuesday
Aug022011

Margery

Name: Margery

Location: DeWitt, NY

Age: 53

Diagnosed with Rheumatoid Arthritis and Sjogren's Syndrome at age 50.

*******

How have your conditions affected you? There are days when I forget about the RA and try to do something that used to be doable (such as walking outside in 90-degree heat, or helping to clear a hiking trail at our daughter's camp), and then suffer for days afterwards. Sometimes, my husband and daughter don't want me to come along on an activity because I slow them down.

Click to read more ...

Wednesday
Jul062011

Christina

Name: Christina

Location: Fleetwood, NY

Age: 32

Diagnosed with Polycystic Ovary Syndrome at 25, Lupus at 29, Type 2 diabetes at 28 and Crohn's Disease at 32

*******

How have your conditions affected you? Lupus is exhausting; I need to sleep at least 9 hours a day. Working in New York City as an Office Manager/Jill of All Trades/Marketing Assistant required far more of me than Lupus would allow. It was so refreshing when I got diagnosed with Lupus because I was justified in the pain I felt as a commuter. I didn't think I was old enough to have such back and leg pain from having to stand on the subway. I knew something wasn't quite right. Six years of that pain and exhaustion caused by Lupus led to anxiety which also led to a bad tempered commuter. I felt bad about needing a seat when I looked like a strapping young woman. It was a blessing in disguise when I got laid off from two jobs in the course of two years. Two companies' finanial troubles were my saving grace. Now working as a Nanny and a Tutor, I get the hours of sleep I need and have a significantly lighter commute.

Click to read more ...