"What matters most is how well you walk through the fire" -- Charles Bukowski

Friday, July 22, 2011

Drinking With Autoimmune

 What do you do when you feel like your autoimmune disease is taking over your social life? 

Weekly Link Roundup 07/21/2011

This week’s link roundup focuses on the loved ones of those with chronic illness. Coping tools and resources for your friends and family— they need to accept and cope with your illness too. A little bit of guidance, education, and kindness goes a long way.
  1. Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend: Written by Lisa Copen (who started National Invisible Chronic Illness Week), Beyond Casseroles explores different ways to help and understand a loved one who suffers from a chronic illness. A great read for anyone not sure how to be helpful to someone who is sick. Remember, little things go a long way. Though this book does have a religious foundation, do not disregard it— there is value in the book’s content regardless of your religious or spiritual beliefs.
  2. 10 Tips for Visiting Someone Who Is Sick: This article details ten specific tips for making a hospital or home visit more comfortable for both parties. Discussing topics such as what to bring, when to visit, and what to do— this is great for friends and family that seem somewhat uncomfortable when spending time with you and with your diagnoses or disabilities.
  3. Well Spouse Association: WSA is a nonprofit organization that advocates for those caring for a chronically ill and/or disabled individual. Organizing support groups and providing online chat rooms, coping skills and various resources, this is a definite resource to share with your spouse or anyone caring for someone that is chronically ill. WSA also provides volunteer opportunities and can direct you to a local support group— or aid you in starting a WSA group in your community.
  4. But You Don’t Look Sick Caregiver Support Forum: a great forum for caregivers to seek support, connect with others, and discuss resources. 

Blog of the week: Cupcakes and Cashmere— Not RA related; posts about design, delicious recipes, LA fashion, and DIY.

Rheumatoid Arthritis Patient Survey

Rheumatoid Arthritis Patient Survey ›

Take time to fill out this survey! Every little bit & input counts.

The Rheumatoid Patient Foundation (RPF) exists to serve people with RA. Although there have been numerous organizations existing over the years for other rheumatological conditions (such as Sjogren’s syndrome or Fibromyalgia syndrome) and other autoimmune arthritis-type diseases (such as Lupus or Ankylosing Spondylitis), the Rheumatoid Patient Foundation is the first and the only non-profit organization just for RA patients.

This survey is a first step at beginning to quantify valuable information contributed by Rheumatoid Arthritis patients via RA blogs like this one, and via social media such as our Facebook page and Twitter rheum community. With our first survey of RA patients, we can begin to identify our similarities and greatest needs. This first survey is simple and will only take you about 10 minutes, but it will be invaluable to our new organization.

In many ways I depend on you - people who are not sick...

In many ways I depend on you - people who are not sick... ›

“…I need you to visit me when I am too sick to go out. Sometimes I need you to help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the store. You are my link to normalcy of life. You can help me to keep in touch with the parts of my life that I miss and fully intend to undertake again, just as soon as I am able.”

A letter to those without chronic pain from those with.
Please take a moment of your time to read this.

check out chronicillnesscat! Hilarious memes, totally relevant.

Weekly Link Roundup 07/13/2011

*I've been quite sick, so these are a bit delayed.

  1. KevinMD Social Media’s Leading Physician Voice; A link for my followers interested in science, medicine, new breakthroughs in the medical world, health care, and heartfelt true stories and articles written by different physicians. I lovelovelove this blog and learn quite a bit from reading it.
  2. Warrior4JRA- Jordan’s Story — Jordan is an 8 year old RA Warrior battling Juvenile Rheumatoid Arthritis with bravery most children have no understanding of. Follow her journey through childhood with a chronic illness— she’s a special girl :)
  3. Ra Warrior’s Methotrexate Index— Since I’ve had such a large amount of MTX-related questions: articles that examine all aspects of methotrexate: FAQ, side effects, folic acid, injections, etc. A great place with easy-to-read content for those of you with questions.
  4. Hand Exercises for RA Sufferers — On good days when my pain isn’t so bad, I try to do these simple exercises to maintain range of motion in my hands. This link provides a slide show of images to show you exactly how to perform the simple exercises correctly. The Arthritis Foundation will also send you a free booklet with simple range of motion exercises if requested.
Blog of the week: RASuperbitch— This beautiful woman shared her journey through rheumatoid arthritis. Many of her posts resonated deeply with me and her story has touched hundreds in the RA/Autoimmune community. Unfortunately, she passed away this summer. My heart goes out to her husband, children, and loved ones.

*As always, please message me if you would like your link removed :)

College and Chronic Illness: The Basic First Steps to Take: Part I

Going to college can be a scary experience for anyone, but throw a chronic illness (or multiple) into that mix and you’re bound to feel lost at some point.

This will be part one of a long series. I will do specific in-depth posts on certain aspects— dorm life, for example, will be a singular extensive post. For now, here you have The Basics: Preparing for School Part I

Wednesday, July 6, 2011

Weekly Link Roundup 07/06/11

  1. Reach Beyond RAThe UCB RA Scholarship Program recognizes and rewards exceptional students who take control of their rheumatoid arthritis (RA) and do not allow it to control them.
  2. Invisible ProjectThe INvisible Project highlights the day-to-day experiences of pain survivors through photographs […] photographers will capture the struggles and triumphs of these brave pain survivors. […] the goal of this project is to create pain awareness, empower survivors and generate change.
  3. Forgetting the Pill-- Site with any kind of cute/silver/adorable/unique/plastic pill box you could possibly think of. Forgetting the Pill also sells timers, pill splitters, pill crushers, and more. Definitely will be investing in a small silver box for my purse.
  4. The Spoon Theory— Most of you will be familiar with this link, but some of my friends following this definitely are not (if you know me or someone else with chronic illness: read this). So, if you’re reading this or if you’ve heard me say something along the lines of “I’m out of spoons,” this is what I’m referencing. While I don’t support all of the Spoon Theory or the twinge of negativity it holds (in my opinion), it definitely helpful in explaining my energy level and restrictions.

Blog of the week: Miss Ginger Lee— full of snark, sarcasm and wit, I’ve been following this lovely woman for a while now. She battles chronic illness with a unique perspective and humor that I’ve yet to see anywhere else. :)

*If I post your link and you would like me to remove it, please send me a private message so I can do so.
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