tag:blogger.com,1999:blog-16262743221341278172011-09-13T15:38:47.301-07:00Welcome to Kelly's Vasculitis Blog! I've created this blog to spread the word about Vasculitis -- please share the link to this blog with everyone! Knowledge is power!KellyBhttp://www.blogger.com/profile/00597590910467757329noreply@blogger.comBlogger111100tag:blogger.com,1999:blog-1626274322134127817.post-61695165474703951662009-11-20T08:32:00.000-08:002009-11-20T08:34:03.252-08:00The 2nd RI chapter meeting was a success! It was attended by 8 people this time and we hosted a guest speaker - Dr. Paul Monach from the Boston University Vasculitis Center. Topics of his presentation included: a review of the types of Vasculitis, medications used to treat them, and the science and art of tapering off these medications. <br /><br />Based on the feedback I received from those attended, a good time was had by all! Gift bags containing literature, bracelets, and stickers were given out as well. The two-hour meeting went by quickly as we wished we had more time! <br /><br />Next meeting is scheduled for Spring of 2010. Hope to draw a larger crowd each time!<br /><br />If you know of anyone who would benefit from this blog, please forward it along! Thanks for your support!<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1626274322134127817-6169516547470395166?l=kellysblogri.blogspot.com' alt='' /></div>KellyBhttp://www.blogger.com/profile/00597590910467757329noreply@blogger.com1tag:blogger.com,1999:blog-1626274322134127817.post-27292638449180216172009-03-07T17:40:00.000-08:002009-03-07T17:50:11.357-08:00Today has been an exciting day with some exciting news!  With help from my friends at Cycle Essence in Cumberland, the location and date of the first Spinning for Vasculitis fundraiser has been secured!  It will be on Mother's Day at Effin's Last Resort in Smithfield.<div><br /></div><div>Details are still being ironed out but it will be an event to be enjoyed by all!  There will be Spinning, music, food, and definitely plenty of fun for the whole family!  What better way to spend Mother's Day with the family than having fun and raising money for a worthy cause!</div><div><br /></div><div>If you are interested in participating in the event, or volunteering, please let me know!  I can be reached by email at kellyb947@cox.net.</div><div><br /></div><div>More details to follow...</div><div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1626274322134127817-2729263844918021617?l=kellysblogri.blogspot.com' alt='' /></div>KellyBhttp://www.blogger.com/profile/00597590910467757329noreply@blogger.com0tag:blogger.com,1999:blog-1626274322134127817.post-15145089436510557632009-03-07T17:30:00.000-08:002009-03-07T17:39:43.665-08:00Hello everyone!<div><br /></div><div>Well, my mom is home now!  My dad and I picked her up on February 27th from Oak Hill Nursing Home.  With the temperature about 50 degrees, she was more than happy to ride with the windows open on the way home (fresh air is not over-rated)!  It was a great day for all of us but especially great for my mom - as she achieved the goal she set out to accomplish - walk out on her own two feet.  Although assisted by a walker, she walked from her room on the 3rd floor to the car in the parking lot of the nursing home - with teary residents wishing her well along the way!  Once she was comfortably seated in the car, she yelled "YAH HOO" loud and proud!  </div><div><br /></div><div>Free at last, free at last!  </div><div><br /></div><div>She been home one week now and adjusting nicely to her home again.  Everyone in the house is glad to see her home - even the kitties!</div><div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1626274322134127817-1514508943651055763?l=kellysblogri.blogspot.com' alt='' /></div>KellyBhttp://www.blogger.com/profile/00597590910467757329noreply@blogger.com0tag:blogger.com,1999:blog-1626274322134127817.post-88017735074844193652009-01-25T06:47:00.000-08:002009-01-25T07:16:06.628-08:00Here's the latest update from Oak Hill...<div><br /></div><div>Last Tuesday, Dad &amp; I went to see Mom.  She was commenting about the time it's taking to adapt to the new wing of the nursing home.  It seems as though she's dealing with staff that aren't as attentive as they should be (or as attentive as the staff on the other wing!)  She's also dealing with the frustration of being 'institutionalized' since May.  Dad &amp; I attempted to lift her spirits.  We reinforced the fact that the sooner she's walking, the sooner she'll be home.  </div><div><br /></div><div>Her challenge:  getting herself from a seated position to a standing position.  I told her that it won't be long and she mentioned that the chair push-ups that they've been having her do are starting to work -- her butt is starting to lift about halfway off the chair.  I also told her:  I'm just waiting for that phone call from you saying that you stood up on your own.</div><div><br /></div><div>Fast forward to Wednesday...</div><div><br /></div><div>I'm at work, in a meeting.  I come out of the meeting to find a message on my phone from Mom -- asking me to call her back when I have a chance.  Figuring the topic of the phone call was to add something to my shopping list, I called her back.  </div><div><br /></div><div>"Ask me what I did today?" she calmly says after a cheerful greeting.  </div><div><br /></div><div>"This is NOT the phone call I was waiting for, is it?"  I exclaim.</div><div><br /></div><div>"I stood up today" she said calmly.</div><div><br /></div><div>And the day seemed a little better from that moment on!</div><div><br /></div><div>Keep Mom in your thoughts and prayers.  Hopefully, she'll be home within the next couple of weeks!</div><div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1626274322134127817-8801773507484419365?l=kellysblogri.blogspot.com' alt='' /></div>KellyBhttp://www.blogger.com/profile/00597590910467757329noreply@blogger.com0tag:blogger.com,1999:blog-1626274322134127817.post-35252873514274380992009-01-12T19:03:00.000-08:002009-01-12T19:17:17.630-08:00Here's another update from Oak Hill.<div><br /></div><div>Today, I received a phone call from my mother.  She started the conversation by saying "What would you say if I told you that I walked 60 feet today?"  Needless to say, I was excited and my response was "WOO HOO!"</div><div><br /></div><div>I had talked to her earlier in the day to find that her day was not starting out so well.  She was recently moved into a new room in a different wing of the nursing home.  Adapting to the new nursing staff was not as smooth as it should have been, therefore she was a bit frustrated.  I don't blame her -- I would have been a little short-fused had someone switched on my light at 5:30 AM to ask me if I had to go to the bathroom!  Safe to say, they won't be doing that anymore (and live to tell about it)!  </div><div><br /></div><div>The day for Mom got better when in her physical therapy afternoon session, she was assisted to her feet and proceeded to walk 60 feet -- with a walker!  Outstanding progress for someone just 5 weeks ago could barely stand for 30 seconds!  </div><div><br /></div><div>Yeah - 2009 is gonna be a better year for her!</div><div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1626274322134127817-3525287351427438099?l=kellysblogri.blogspot.com' alt='' /></div>KellyBhttp://www.blogger.com/profile/00597590910467757329noreply@blogger.com0tag:blogger.com,1999:blog-1626274322134127817.post-55027376744063629992009-01-04T12:27:00.000-08:002009-01-04T12:35:51.336-08:00I was just reading an article about the recent death of John Travolta's son, Jette.  Did you know that he had vasculitis?  Jette had a type of Vasculitis called Kawasaki Disease, which strikes children.  In the U.S., over 4,200 children are diagnosed with it each year.  80% are under the age of five.  The article stated that Jette was diagnosed when he was two years of age.<div><br /></div><div>For more information about Kawasaki Disease and its symptoms, go to https://www.vasculitisfoundation.org and click on the Kawasaki Disease link at the top of the page.</div><div><br /></div><div>Knowledge is power!</div><div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1626274322134127817-5502737674406362999?l=kellysblogri.blogspot.com' alt='' /></div>KellyBhttp://www.blogger.com/profile/00597590910467757329noreply@blogger.com0tag:blogger.com,1999:blog-1626274322134127817.post-42617458511035570162009-01-04T12:00:00.000-08:002009-01-04T12:11:18.080-08:00Hello everyone!<div><br /></div><div>Just wanted to update everyone on Mom's status...</div><div><br /></div><div>It has been one month since checking into Oak Hill Nursing and Rehabilitation Home.  She has accomplished so much within the last month!</div><div><br /></div><div>Yesterday, my father and I were invited to attend my mom's physical therapy session to witness her walking "assisted".  We were quite impressed to see that she walked over 40 feet between the parallel bars.  Although she was holding onto the bars and the physical therapist was holding onto her, she took each step, one-by-one, until it was time for a break.  Although one of her knees buckled, she took a rest and got back up to walk some more!  </div><div><br /></div><div>The PT staff has mentioned that it may be a couple of weeks but she may be using a walker soon -- instead of a wheelchair!  2009 is shaping up to be quite amazing already!</div><div><br /></div><div>Happy New Year!</div><div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1626274322134127817-4261745851103557016?l=kellysblogri.blogspot.com' alt='' /></div>KellyBhttp://www.blogger.com/profile/00597590910467757329noreply@blogger.com0tag:blogger.com,1999:blog-1626274322134127817.post-3628548681289366002008-12-28T07:46:00.000-08:002008-12-28T08:12:28.181-08:00Happy Holidays!<div><br /></div><div>I hope everyone is enjoying the holiday season as it slips out of our grasp -- yet again another season is nearly gone!</div><div><br /></div><div>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.</div><div><br /></div><div>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.</div><div><br /></div><div>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!</div><div><br /></div><div>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.  </div><div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1626274322134127817-362854868128936600?l=kellysblogri.blogspot.com' alt='' /></div>KellyBhttp://www.blogger.com/profile/00597590910467757329noreply@blogger.com0tag:blogger.com,1999:blog-1626274322134127817.post-88566741162131296642008-12-09T17:37:00.000-08:002008-12-09T18:25:53.795-08:00Since I haven't updated this blog in quite a while, I figured it was long overdue!<div><br /></div><div>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!</div><div><br /></div><div>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!</div><div><br /></div><div>Now - for an update on my mother:</div><div>On December 6th, my mother transferred from the Rehabilitation Hospital of RI to Oak Hill Nursing Home &amp; 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!</div><div><br /></div><div>I think that's my updates in a nutshell.  I'll post again soon!</div><div><br /></div><div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1626274322134127817-8856674116213129664?l=kellysblogri.blogspot.com' alt='' /></div>KellyBhttp://www.blogger.com/profile/00597590910467757329noreply@blogger.com0tag:blogger.com,1999:blog-1626274322134127817.post-63332843055449428212008-10-13T06:48:00.000-07:002008-10-13T07:07:46.783-07:00My 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?<div><br /></div><div>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.</div><div><br /></div><div>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.</div><div><br /></div><div>Please pass on this blog address to anyone whom you feel may benefit from it.</div><div><br /></div><div>Thanks for the support!  Check back often for updates!</div><div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1626274322134127817-6333284305544942821?l=kellysblogri.blogspot.com' alt='' /></div>KellyBhttp://www.blogger.com/profile/00597590910467757329noreply@blogger.com1tag:blogger.com,1999:blog-1626274322134127817.post-28204945907230976612008-10-10T16:53:00.000-07:002008-10-10T17:14:13.965-07:00Hello Everyone!<br /><br />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.<br /><br />Check back often for updates!<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1626274322134127817-2820494590723097661?l=kellysblogri.blogspot.com' alt='' /></div>KellyBhttp://www.blogger.com/profile/00597590910467757329noreply@blogger.com0