My LUPUS is…
As difficult as living with health challenges can be, I feel lucky to have ‘met’ some pretty amazing people along the way. Today’s post is going to be about recognizing those people for their contributions toward me getting a ‘grip’ on what my life means today and motivate me in offering them through MLWT to others. I want to list blogs, websites and general resources along with individuals who are either living it, living among it or are simply listening and responding to those of us who do.
I’m certain that I will miss someone, but if you visit me/MLWT through any of the social/blog/networking sites like Facebook, MySpace, Twitter, BlogCatologue, LinkedIn or blognetnews.com/PortlandOR, and where we are mentioned on the other blogs you might visit, you are bound to see more great people.
In no particular order, here’s the short list that gets added to daily…
my rheumatologists, (personally) Dr. K, who made the comment “You don’t look so good” that pissed me off. You were the one who finally listened and helped me find out what was going on. Now, its Dr. S, who doesn’t understand why I don’t have health insurance, but then becomes outraged once I remind him of my situation and offers me support in the decisions I feel I have to make. Although he is less supportive (and understandably so) when I make changes without telling him (I hear you, Dr. S)
my nephrologist, (personally) Dr. W, who was instrumental in me making it through my kidneys shutting down. The person who has gone above and beyond making certain that I received the support, the procedures, the medication and the encouragement to gain my health back. The one who can bring me back to reality every time I stray into ‘pityland’ with a quick “…but do they work?” Yep, and I’ll just be happy with that, Dr. W.
my family, who live with the best (and very worst) of what I have to offer – that can sometimes fluctuate on a daily basis. They still continue to love me and give me the chance to try harder, be better and find peace in sometimes the simplest things.
my friends, ‘old’ and new, who are an important key in keeping me looking to the horizon
Pat, MLWT’s very patient webmaster and portal to Web 2.0-land. He offers me hope in thinking I’ll be able to figure all this tech stuff out
my C.I. comrades, all those voices over the internet (and in person) who share my story- listen to my story – tell their story – share their knowledge and resources – laugh with me – cry with me – get frustrated along with me – inspire me. These sites (to name only a few) offer me regular encouragement to keep on trying~ and I thank you:
- Leslie at Getting Closer to Myself
- Sara at Despite Lupus
- Jenni at ChronicBabe
- Lisa at Rest Ministries
- Rosalind at C.I. Coach
- Sandy at Fighting Fatigue
- Christine at But You Don’t Look Sick
- “HtCwP” at How to Cope With Pain
- Dr. Rob at Musings of a Districtable Mind
and my friends elsewhere on: Twitter, Facebook, MySpace, BlogCatalogue, LinkedIn
my Community
- MLWT Advisory Team (see “About MLWT” page on this blog)
- Betsy at Clackamas Community College, Oregon
- Beverly on the Oregon Coast, who always has great info and resources for FM
- Local volunteers, individuals and businesses for supporting our lupus advocacy, fundraising and awareness campaigns (those not local also!)
- Darese, for her spirit and courage while going through her preparations for a kidney transplant – where she makes what I go through like nothing
the Internet , where we can find information and lifelines that help us do what we need to do in order to take care of ourselves. These are some of the basic sites we with lupus should know and visit:
- Lupus Foundation of America, Pacific NW Chapter (for us here)
- Lupus Foundation of America. org
- S.L.E. Foundation
- National Kidney Foundation
- Skin Cancer Foundation
- National Fibromyalgia Association
- Arthritis Foundation (Pacific NW Chapter)
- Firstgiving
Obviously, this list is small and doesn’t include everyone – the idea is to add to it. Please add the blogs and sites that you feel deserve special mention for those living with lupus or lupus-related illnesses. The more we offer, the better it will be for everyone – especially those who are just starting out with it. In Oregon, we don’t have a localized listing for resources and its time we did. For those of you outside our state, we need your help in creating one here.
Wow, it has been too long since I’ve thought about all the people who I have relied on over the years…I’m sorry it took so long to say ” thank you“.
