When I was first diagnosed with Churg Strauss Syndrome (CSS) all I wanted to do was run away. Run away from the diagnosis, run away from reality, run away from my body.
After speaking with my doctor which quickly multiplies to be many doctors I was so confused, scared and just wanted answers. Nobody seemed to have any, there were no clear cut medical protocols for CSS and I was the first CSS patient for most of my doctors. I realized I had entered a tunnel… a long dark tunnel.
I was so ignorant of CSS and all that came with it. I relied heavily on a Yahoo group for information and glimmers of hope. SO many wonderful people told me things would be OK and helped me stand on my own while navigating the new world of specialist appointments and uncertainty. At that time there were no Facebook groups about CSS. I would say I had come out of the tunnel but the Winding road laid ahead.
I spent many, many hours at a local medical library getting research articles and reading everything I could find. I ordered medical textbooks just to read one chapter on Vasculitis and CSS. I was becoming an unofficial medical student out of necessity to understand my illness. The road was less traveled but with each piece of knowledge I felt more empowered. The information was both hopeful and doom and gloom. I read it all… I kept researching, I needed to know everything to be in control.
I attended Vasculitis Conferences put on by the Vasculitis Foundation and tried to understand everything the medical experts were presenting. What I did not understand, I looked up and studied. The more educated about CSS I became, the more at peace I became. I stopped running (although sometimes when new things pop up I still feel an urge to run). I realized that for me education was the key to becoming empowered and calm about CSS. (link to my conference notes from 2014 UCLA conference on Vasculitis)and ( 2016 UCLA conference) and (link to my Jacksonville FL conference notes)
Fast Forward ten years. The internet is now so vital in researching any rare illness and there is such a wealth of information out there. There are many good sites out there and many Facebook groups to ask other people with CSS questions.
For the past few years I have felt the need to share the knowledge that I have obtained and try my best to share things in these Face Book groups. I try to read the articles and then pass them along with summaries or my own comments. I get to share how I cope or things I find may work. I get great pleasure out of taking complicated information and breaking it down to easy to understand parts (it’s the teacher in me coming out again).
I have found two other wonderful site and blog that seem to compliment what I do with my own web site and FB blog. These are not big medical center sites — these are 2 sites run by CSS patients so they speak from the heart and understand what we are going through.
First off, Michael is from the UK and has a wonderful down to earth site about CSS/EGPA. He speaks in free flowing language that is easy to understand and poses things in question and answer format. He also does his own artwork which is very quirky and fun. If you have never seen his EGPA pages I highly recommend you spend some time investigating them.
Second is a FaceBook page called Vasculitis Journey. The writer is newly diagnosed and writes totally from the heart. She is not putting on a show, she writes about her experiences and it is like reading a travel journal of her adventures with CSS. I love her style and her positive attitude. You can tell she is searching for answers and scared. By sharing this we see that she that she is actually a little bit of each one of us. Scared and searching for answers. She is a person that someday I want to sit in a coffee house with and talk for hours.
I appreciate the positive messages of both these sites and love the idea that our 3 sites are such compliments. Michael’s EGPA.info is great info and full of resources and factual information. My site and blog are personal experience with links to information and research. I write from my heart and try to link it with information we may be craving about CSS. Vasculitis Journey is like reading a wonderful book. Chapters are her posts about life events and challenges with CSS as she continues her quest for answers.
I hope these three personal CSS sites/blogs will help you navigate your winding road of CSS and may help you get out of a tunnel, if you are stuck there.
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