Weekly Link Roundup 09/14/2011

1. Advocacy For Patients — Amazing amazing resource! AFP, created by a lawyer suffering from multiple chronic conditions, offers free advice and advocacy services to those suffering from chronic illnesses, focusing on everything from health insurance to social security matters to discrimination in the work place. I am linking to AFP’s blogspot, where you will find a link to their .org site. Even if you do not need this resource now, it is a link to tuck away just in case. Such a valuable wealth of information!
   
   
2. Psychology of Chronic Illness — Psychologist Nicoletta Skoufalos, Ph.D.,  discusses various facets of living with a chronic illness, written with the intent to serve as “thought provoking discussions.” Very interesting link for those of you interested or studying psychology or more specifically, the psychology of chronic illness/living and coping with a chronic illness.
   
   
3. Lupus Family — Created by a devoted husband whose wife suffers from SLE. Lupus Family was designed to serve as a “safe haven” of sorts; a “community of support for lupus patients and their friends and families” while providing a “safe haven.” A link to send to a family member or friend who is struggling to be a care taker or on looker of your disease, or a great resource for those suffering to get an idea of what it is like to be in the opposite role— a role that is equally helpless. Geared towards Lupus, but adaptable to similar conditions.
   
   
4. International Still’s Disease Foundation — The only organization I was able to come across that advocates for Still’s Disease. ISDF is a nonprofit organization that provides nearly all the information there is to be had related to Still’s Disease, from research to lab results, to support resources and the latest research. Definitely a site to keep bookmarked if you have Still’s or to send to family/friends.
   

*Send me your favourite blogs you think should be advertised as blog of the week :) Not only do you get to show off your favourite blogs, but I will have more to look at and stay busy with after surgery! As always, shoot me an email if you would like your link removed or altered in any way.
                       

Surrounded By Silence: Chronic Illness and a Lack of Support

"Things change, friends leave, and life doesn't stop for anyone" -- The Perks of Being a Wallflower, Stephen Chbosky

The Chronically Ill Friendship...

It does not matter how slow you go so long as you do not stop. — Wisdom of Confuscius

I’ve been thinking about this quote a lot lately and how important its message is to the chronically ill or in pain. What does it mean to “stop” when you have a chronic illness? And how does one accept having to slow down? Perhaps one of the most important subjects I will touch on…

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…

Weekly Link Roundup 07/06/11

1. Reach Beyond RA— The 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 Project — The 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.

Bad Day Blues and Breaking Points

Rheumatologist appointments are always a nerve-wracking experience for me. It seems that between each appointment I develop absurd amounts of new symptoms I had no idea were related to my autoimmune diseases. I am constantly holding my breath wondering if today is going to be a good rheumy day or a day of poor blood results and bad news— a bad rheumy day. Today was one of those bad days…