Holiday Wishes to all!

Happy Holidays!

I hope everyone is enjoying the holiday season as it slips out of our grasp -- yet again another season is nearly gone!

My mom is going well in Oak Hill and enjoyed her Christmas.  My dad, my boyfriend and I brought her Christmas dinner (and presents!) and celebrated our Christmas at Oak Hill.  My mom also delivered her own Christmas gift to us by walking 12 (assisted) steps this week!  She's a fighter and is really ready mentally to come home -- just working on the physical part now.

Our local Rhode Island chapter is taking some steps of its own as well!  Jim Bornac has volunteered to create and maintain a website for our local RI chapter.  This is wonderful news and provides a great way to keep everyone updated with the latest news, meetings, and events scheduled for our chapter.  I'm in the process of working with Jim to add content to the website so check back soon -- I'll be posting the link to the website.

This year, the Vasculitis Foundation has moved their awareness week from September to May.  With that said, I've been thinking about planning an awareness and fundraising event for May.  With Spinning so near and dear to my heart, I've been thinking about a Spin-a-thon of sorts.  To facilitate this event, Peter Vasconcellos of Spin-Works has agreed to host our event in one of his Spinning studios.  Details for this event are still in the works so check back soon as I'll post the details here!

So, as the holiday season is ushered out, 2009 is ushered in with some exciting activities to look forward to!  If you have some time and would like to help out at our awareness and fundraising event, please contact me at kellyb947@cox.net.  

RI chapter of the VF is on it's way!

Since I haven't updated this blog in quite a while, I figured it was long overdue!

Since my last post, I've been busy.  In early November, I attended the Boston chapter of the Vasculitis Foundation.  Needless to say, I was very impressed with the meeting -- it was informative, had a well-known physician who has treated patients with Vasculitis as a speaker, and I even got to meet three people with CSS!  The meeting had a good turnout (about 25 to 30 people).  The leader of the Boston chapter is happy to lend advice for getting this chapter off the ground and for that, I am grateful.  Some of the Boston chapter meeting members are meeting in January 2009 to discuss details and tour the site of the Vasculitis Awareness Walk slated to take place in May 2009.  If I can attend the meeting in January, I will post some details on this blog for your reading pleasure!

The task of forming the RI chapter of the VF is starting to take shape.  The VF has sent out letters to all of their contacts within the RI radius stating that a local chapter is forming and asking for interest.  I've already gotten some positive responses!  With those positive responses, I've starting looking forward to the first meeting after the holidays.  The first meeting will be quite informal -- more of a forum for everyone to meet each other and discuss what they expect to get from the group.  At this point, I'm looking to starting building a list of physicians in the area that may be able to help our group raise awareness.  My mother is even recruiting some of the medical staff in the facilities that she's been in!  So far, I've gotten three doctors to agree to post some brochures in their offices.  I'm confident that the group can make a difference!

Now - for an update on my mother:

On December 6th, my mother transferred from the Rehabilitation Hospital of RI to Oak Hill Nursing Home & Rehabilitation Center in Pawtucket.  So far, she's really liking this facility.  They were able to stand her up between the parallel bars today (12/9/2008) so that's a good start.  She continues to maintain a positive attitude and that helps tremendously!  Today she started her outpatient dialysis treatment.  Every facility that she's been in so far has had in-house dialysis but since Oak Hill doesn't, she's going to Johnston for treatments three days a week.  Progress continues slowly but surely!

I think that's my updates in a nutshell.  I'll post again soon!

Starting a new Rhode Island chapter of the VF!

My mother was diagnosed with Churg-Strauss Syndrome (CSS) about two months ago now and is currently in rehab for the neuropathy that she's suffering from in both legs and her left hand.  I've seen CSS turn a healthy, active woman in her fifties into someone who suffered from problems plaguing just about every organ in her body.  She has gotten all three stages of CSS but is currently working her way into recovery.  As a family member, the most frustrating part of this ordeal was the inability to find doctors that have heard of CSS -- let alone know how to treat it (she went to three different hospitals before we could find someone to treat her once diagnosed).  I wonder if doctors in the area were familiar with the symptoms, would she have gotten to stage 3?  Would she have suffered like she did?  Would she have the use of her kidneys and not have to be on dialysis?

These questions have motivated me to contact the Vasculitis Foundation to see if I could somehow raise awareness (and funds for research) of this LIFE-ALTERING condition.  Awareness is key to identifying vasculitis and choosing a proper path of treatment before irreversible damage is done to critical organs.

That being said, I am working with the VF (Vasculitis Foundation) to form a Rhode Island chapter.  I'm looking for anyone in the RI area that would be interested in contributing ideas for awareness and/or fund-raising events.  I'm also gathering together a list of names of patients (along with their family members) that have a form of Vasculitis in this area so that we can exchange treatment and physician information.  It's always good to know what has worked for some as well as what hasn't worked for others.

Please pass on this blog address to anyone whom you feel may benefit from it.

Thanks for the support!  Check back often for updates!

Vasculitis Foundation - Rhode Island Chapter

Hello Everyone!

This is just the beginning of an exciting venture. Since my Mom has been diagnosed with Churg-Strauss Syndrome (or CSS for short), I have felt the need to spread the word about Vasculitis Awareness. I have contacted the Vascultis Foundation about starting a Rhode Island chapter and they were more than happy to provide guidance.

Check back often for updates!