When I was first diagnosed and told how rare this disease is and what is coming my way I felt so very isolated and freaked out. I know I would have loved to have some first hand stories to give me some insight into my 'new life' from real people who are dealing with the same thing. Because WG is so rare there are few if any face to face Weggie support groups as we tend to be quite spread out throughout the globe, so this might be a good alternative.
Since Wegener's affects everyone differently, the drugs cocktails affect us all differently, and we all have very similar but also very different stories, I think it would be great to put that out there to be that shoulder to lean on that we all needed for someone else. There are amazing successes stories, and also great battles fought every day by Wegener's patients.
Stay tuned, and please contact me if you wanna be part of this fun, exciting and hopefully worthwhile project.
Oh yeah, profit generated from sales of said book will go to research for WG.
THE OUTLINE IS READY IF YOU WANNA PLAY -
Section 1. Just the facts ma’am /sir
Short answers to help with the illustration at the beginning of each story. I will use these as the intro to each person using actual illustrations and a photograph that you supply. Send a photo of the person that you remember before the ‘new normal’ hit.... something that you really really like. What I want to show here is the fact that this disease will hit anyone, anytime, anywhere... it does not discriminate and doesn’t chose based on any preconceived ideas of health and lifestyle. ANYONE, ANYWHERE.
1. First Name:
2. When did you get diagnosed? (What year)
3. Age at diagnosis:
4. Where were you living at time of diagnosis? City, Province/State/Region, Country.
5. What parts of your body were affected that started your search for diagnosis? (I will use this both as an illustration and as point form later on, so you can put the info in how you want to – be specific though so that I can put down dots on an illustration of the human body)
6. Where do you currently reside and receive treatment?
7. Photo: send a digital photo (the higher the resolution the better) or if you don’t have a digital photo you can send me a hard copy by mail or get a photo company to scan it for you if you want to ensure it doesn’t get lost in the mail. For those of you that are shy (Jack) maybe you can send me something that doesn’t show your face but something that shows you before diagnosis – if you know what I mean.
Section 2. The Story
This is where you get to tell the story. In your own words. Tell it the way it happened to you and how it made you feel. No holds barred. The idea with this is to get the human experience side of it out. Make it as long or as short as you like. We’re all different, our stories are different, we tell our stories differently, and the disease hits us all differently, be yourself and be honest. This is where the guts of the book are and where it will help the most people. I’m just jotting down ideas as they come to me to help tweak your thought process and get as many answers for the newly diagnosed and their loved ones – maybe even the doctors who’ll be helping out new Weggies in the future. You don’t have to answer all the questions, just tell it like you remember with what sticks out in your mind and what you think will help others. Keep within the overall outline though so that there is a coherent style and flow to the collection.
- You – The Bio: Short (as short or long as you like) snapshot of the person you were before you got struck by the ‘lucky stick’ . Where were you born, what was your childhood like, what did you like to do for fun, work, family life, spiritual/religious life... what made you who you are? What made you sparkle inside?
- The start of the rollercoaster ride. How did it all start? What were your symptoms and where did you go for help? How long before anyone took you seriously? How were you made to feel by the medical profession? Any misdiagnosis along the way? How did the good doctors impress you, and how did the bad doctors drop the ball?
- The diagnosis. So how did it all unfold? For most if not all of us, this is a very contradictory time. It’s both a time of relief in that finally there’s something concrete to hang your hat on, but it’s also not a very good diagnosis to be given. It’s full of stress, pain, uncertainty, chaos, fear, love, and a lot of other things that the human mind can conceive of. But I project. How did it unfold for you? What happened when the medical profession found out you have a very rare disease? Did you all of the sudden start getting different treatment? Did the experience improve or get worse? What was the final medical procedure that gave the final positive diagnosis? Was it a single doctor or a team that diagnosed you? Medical student? Nurse?
- Treatment and Doctors. What was the treatment regime you were put on and how was it presented to you? What medical specialty is your quarterback? How did you get your doctor? Was he passed on to you/ assigned to you or did you have to search out your own medical team? Did you have any doctor mishaps along the way? What have been your biggest challenges with dealing with WG and the medical profession? How long were you on the first method of treatment and how did it change as time went on.
- Drug side effects and life as a Weggie. The drugs we are on are crazy, and the side effects are crazier. What has your experience been – positive or negative or neutral? How have you dealt with the physical/aesthetic manifestations of the drug side effects? What was your initial drug regime? How did you wean and how did it go for you? Pred weaning effects vs. a flare vs. having a cold or flue vs. having an infection. Any words of wisdom? This is the trickiest part for a newbie and people’s various experiences will be priceless for patients, family, friends and doctors.
- Flares? Have you had any flares since you started treatment? What have the time lines been between initial treatment and any subsequent flares? Have you noticed any pattern that you think sets off a flare? What has been your experience with flares and how they feel at the start? Any advice for new patients on getting on flares as soon as possible? Do you have access to your labwork? Do you keep track of symptoms and/or lab work? Do you find any correlations between those two and a flare? Apparently with most WG patients the first couple of years are when you’re tweaking drugs and trying to figure out the patterns and nuances of the disease. Do you find this has been the case with you?
- Life after Wegener’s. How have things been for you since the day you heard the phrase “You have Wegener’s Granulomatosis”? How tough have the tough days been? How good have the good days been? How has it changed your life for the better and for the worse? What do you consider accomplishments after diagnosis? Some are perceived as big in the outside world while others are perceived as insignificant in the outside world, but we know that every little thing is an accomplishment, so write them down... big or seemingly small. Crossing the living room for a cup of tea, walking down the street with your toddler or climbing Mt. Everest – they’re all huge.
- Your own personal advice to the newly diagnosed. What are some words of wisdom that you wish someone would have passed on to you when you were first dealing with this? Anything goes. What do you wish your doctors would have know and done in hindsight? What do you wish you had done differently if anything in hindsight?
- Thank you’s. Any docs, family, friends, loved ones you want to single out? We wont put the names of the nasties in here, but I think it would be great to put down names of people who have made this as positive an experience as it can be. Totally up to you though.
Once you pass me all of your information, I will lay it out in a consistent format and pass it back to you to ensure that I haven’t misrepresented anything, and that it is all to your liking. I would like to keep as much as the copy as possible in your own words, but will get an editor to ensure that it is grammatically correct and understandable (mine will be the biggest challenge I’m sure.)
You can pass me all of your info to my home email account ( or if you have any questions at all)
Thanks a ton for being even remotely interested in playing this game. I really think something awesome will come out of it.
Marta.
P.S. I will also need your contact info. This of course will not be published, but I’ll be contacting you to ensure that once this goes to publication we’re all legal and tickety boo.
Full Name:
Mailing Address:
Phone Number:
Email address:
Mailing Address:
Phone Number:
Email address:
