Are you an IC Angel?? Would you like to be one??

[icnmgrjill]

It came as a surprise just a moment ago as I was updating the drug assistance resources on our website, that we are facing a sad anniversary on our site. Just two years ago we lost one of our IC heroes, Diane Manhattan-Lopresti. She passed suddenly at a young age, on October 16, 2003 of a lung infection (not IC related). For those of you who knew her, I know that we share great comfort in her memory and love. For those of you who didn't have the chance to know her, I can only offer that she was one of my best IC friends.

Diane was a bundle of energy who, though she had major IC, contributed greatly to our movement. Despite coming from a very humble background, she was excited to help other IC patients. She was the first person who found the ICN and offered to help me build this community. In the five plus years that she worked at my cyberside, she created many new areas of our website, including our drug assistance program area, our low income assistance area and many more.

Diane was someone that you just want to sit and talk with. Comforting and encouraging, she always found time to say Hi to people and to ask how they were doing with their IC. She would go through these boards at about 4am to give them a good kick off for the day before running off to do her early shift as a waitress. At her funeral, we discovered that she also had a secret... that she had been giving money to patients who were struggling and, for some, paying for their prescriptions. Most amazingly of all, she proved that you could do so many things even with IC. She taught herself how to use a computer, how to write a computer program, how to maintain and build a webpage, how to use the National Library of Medicine and so much more.

In her memory, we created the IC Angels program. An IC Angel is someone who believes, in their very heart of hearts, that no one should suffer alone. Someone who is willing to lend a helping hand, a moment to talk, a supportive email, a chat in our chat room or an orientation for a newly diagnosed patient. An IC Angel is also a role model, a patient who is active and involved in the IC movement. They may run a support group or perhaps just offer support by email. When an idea strikes, they share it with others to get them motivated and involved. They might write an article, create a new resource or share a helpful tip. An IC Angel believes that by working together we can make a difference.

Being an IC Angel isn't a huge, daily job. They are small acts of kindness that can be temporary or may just need one task done. These are the projects that Diane and I had talked about doing before she passed. Real needs for real IC patients of all ages. You might help by running a support group or by contributing a story that helps to explain IC to children.

What's needed?? VOLUNTEERS!!!!

(1) Support Group Angels
Would you consider starting a support group in your town or state??? This is such an important need. Even if you just work with a handful of patients twice a year, you can help break the isolation of others, offer support and encouragement and truly make a difference. It's the most important gift of all! Please visit our activism corner to review our support group guide to see if this could work for you. If not, read on! There many other ways that you can be an IC angel!

(2) Support Group Coordinator
We need an IC angel, preferably one who has already run a support group, to help facilitate good relationships between support group leaders so that they can share their success stories and have their own opportunity for support. Must be a self starter and just want to hang out with these lovely people! You may do an SGL newsletter or just encourage occasional meetings so that support group leaders can talk to each other about what issues they face, what great programs they run, etc. etc. Where does a support group leader go for support? Let's fill that need now!

(3) Newbie Angels
We need some seasoned IC patients to help guide newly diagnosed patients in a positive, supportive and encouraging way. You can't be focused on your health.. you have to be able to focus on giving unconditional positive support to newly diagnosed patients in need. The emphasis here is a POSITIVE, ENCOURAGING & HOPEFUL attitude. If you have done your reading, know your therapies, and understand basic self help, you can be someone, like Diane, who gives comfort to someone who is confused and frightened. The more the merrier.

(4) Angels for the Children with IC
We need a volunteer or team to help create new resources for children with IC, age 12 and under. We've begun a new Kid's Corner that will offer age specific information and, hopefully, a rewrite of our children's book so that it talks about IC for a child with IC in an easy, hopeful way. Are you a mom of a child with IC? Help us to help other moms by sharing your wisdom on another parent can survive. This person may run a special mailing list just for parents of children with IC.

(5) Teen Angel
Just imagine being a teenager with IC. In addition to the embarassment of leaving class, just imagine how difficult it might be to socialize. We need your help to create our new TEEN ZONE that covers school, dating, socializing, and a teen cool diet.

(6) Senior Angel
Imagine having IC and being quite elderly and unable to speak for yourself. Worse, your judged as having dementia just because you have to use the restroom. There are so many issues that need to be explored here. How do we care for a senior citizen who is diagnosed with IC but is in a convalescent hospital? How can we help those families?? There's great room to do some real research here.

(7) IC Angels of the Airwaves
We need PR and lots of it. IC and bladder disorders need more and more public relations because there are still patients suffering in silence at home alone! We can reach them... and each article published that talks about IC does! All it takes is a phone and/or a note to your local paper. Ask them if you can tell your story about IC and why your community needs to be more informed and compassionate. I want this to be a committee of about six or more patients who won't take no for an answer. We're going to start with nothing and building something new... so if you have experience in PR or you just want to make sure this happens, volunteer to be on this committee.

(8) Angels for Low Income Patients
Let's admit it... having any medical condition can cost enormous amounts of money. Diane and I have always been passionate about creating resources for patients who were hurting financially. There's nothing worse than having to choose between buying food or buying a medication. The IC Drug Assistance program guide helped patients find sources for affordable meds. We need someone who will continue this tradition and create more real life low income tips! From finding food banks to rental assistance programs, we can help each other.

(9) Angels for the Holidays
Our ICN Holiday Program has helped to send holiday meals to families in need, and presents for children who would otherwise have nothing on christmas morning for more than five years. We're always looking for volunteers who might want to help. More on this later!!!

If you'd like to be more involved, please let us know!

Jill :)

[traceann]

Hey Jill! I am interested in possibly being a newbie angel, what do I need to do, or what info do I need to have? Thanks!!!

Hugs!!!

[SandyRN]

I'd like to have some help starting a support group here in the Western part of North Carolina, so I could be a support group angel/coordinator, plus I'd love to be a newbie angel. I'm also interested in the holiday angel program...really, I'm interested in just about anything that I can do to help!

Just let me know what I need to do :)

[Dixiefireball]

Guys I could use some help over on the low income boards to find more *updated information.* while I was so sick I wasn't able to keep them up as well. Exp. with the hoilday season comeing up more families need help more then ever!
I'm back in action now, but could still use the help getting things back up todate!

Every Angel helps So Please guys jump in, and Help the areas where you feel you can do the most good.
Come on guys help out PLZ!

[Babs RN]

II would love to be a newbie angel.

Hugs,
Barb :grouphug:

[Sarojini]

Jill -- I emailed about being either a newbie angel or an angel of the airwaves, as I've been writing to papers, magazines, etc for some time now. HOWEVER, Sandy, if you want help starting a NC support group, count me in as your co-founder (if you want). We could possibly have meetings between the northern and southern areas of the western NC area -- perhaps somewhere in between??

[SandyRN]

Jen,

I think that would be wonderful!! Gives us something to talk about after my appt with Dr. Evans....not that we'd have trouble finding things to chat about! LOL

Sounds like fun!!!!!!

[karen10300]

Jill, I've worked and have done hands on care with seniors for about 20 years or so now. I'm pretty new to IC but like all the other's here I am learning out of neccesity. I'm not real sure what your ideas are in this area but I would be glad to help in whatever way I could. It's so sad to see an elderly person who can't get a thought or point across to someone who won't listen or doesn't take the time to try and understand them.

[icsonja]

Jill, I emailed to become an angel awhile ago, but it may of been missed. I would love to become an angel. In fact I feel complelled to help , others have helped me,including yourself and without this support I would of been lost.
I will volunteer wherever there is a need.
I am writing a autobiography and have my life story being looked at my several production companies,I also try to get any attention brought to IC in my local area that I can, I have written the Governor, senators, and represenatives about IC disability issues.I and one of the other ladies at chat Tuesday were speaking about a campaign to get restroom acess using the Americans with Disabilities Act. So I am ready!
But think my heart lies at one on one support, thanks to my dad (who is a minister) I have been given the gift of gab, I try now to respond to those who seem to need a ear so being an andel would be an honor.
And as I have been thru a-z of treatments, noe beginning Bion trial I have been there done that with many of the treatments my fellow ICers are going thru or thinking of trying.
OK, have I begged enough???? :bow: :bow:
I need this as much for myself as for others , so use me, I have nothing but time and a new computer thanks to FINALLY getting SSI Disability!
It would be an honor to honor your friend.
Sonja :angel: in waiting

[Imustpee]

Sign me up! I can help with any of these... :)



(3) Newbie Angels
We need some seasoned IC patients to help guide newly diagnosed patients in a positive, supportive and encouraging way. You can't be focused on your health.. you have to be able to focus on giving unconditional positive support to newly diagnosed patients in need. The emphasis here is a POSITIVE, ENCOURAGING & HOPEFUL attitude. If you have done your reading, know your therapies, and understand basic self help, you can be someone, like Diane, who gives comfort to someone who is confused and frightened. The more the merrier.

(4) Angels for the Children with IC
We need a volunteer or team to help create new resources for children with IC, age 12 and under. We've begun a new Kid's Corner that will offer age specific information and, hopefully, a rewrite of our children's book so that it talks about IC for a child with IC in an easy, hopeful way. Are you a mom of a child with IC? Help us to help other moms by sharing your wisdom on another parent can survive. This person may run a special mailing list just for parents of children with IC.

(5) Teen Angel
Just imagine being a teenager with IC. In addition to the embarassment of leaving class, just imagine how difficult it might be to socialize. We need your help to create our new TEEN ZONE that covers school, dating, socializing, and a teen cool diet.

(6) Senior Angel
Imagine having IC and being quite elderly and unable to speak for yourself. Worse, your judged as having dementia just because you have to use the restroom. There are so many issues that need to be explored here. How do we care for a senior citizen who is diagnosed with IC but is in a convalescent hospital? How can we help those families?? There's great room to do some real research here.

(7) IC Angels of the Airwaves
We need PR and lots of it. IC and bladder disorders need more and more public relations because there are still patients suffering in silence at home alone! We can reach them... and each article published that talks about IC does! All it takes is a phone and/or a note to your local paper. Ask them if you can tell your story about IC and why your community needs to be more informed and compassionate. I want this to be a committee of about six or more patients who won't take no for an answer. We're going to start with nothing and building something new... so if you have experience in PR or you just want to make sure this happens, volunteer to be on this committee.

(8) Angels for Low Income Patients
Let's admit it... having any medical condition can cost enormous amounts of money. Diane and I have always been passionate about creating resources for patients who were hurting financially. There's nothing worse than having to choose between buying food or buying a medication. The IC Drug Assistance program guide helped patients find sources for affordable meds. We need someone who will continue this tradition and create more real life low income tips! From finding food banks to rental assistance programs, we can help each other.

(9) Angels for the Holidays
Our ICN Holiday Program has helped to send holiday meals to families in need, and presents for children who would otherwise have nothing on christmas morning for more than five years. We're always looking for volunteers who might want to help. More on this later!!!

[melcarol]

jill, i would love to be an ic angel, i have been diagnosed for 12 years and have seen,done or tried it all(except interstim)- i feel that maybe some of my varied experiances fo example--3 docs before i found the right one, have had 27 cystos to date ),could be of help to someone. please respond if i may be of service-
hugs, smiles, most of all prayers
Melanie McQueen--- (e-mail)ohsbball@otelco.net

[icnmgrjill]

Awesome! Diane would have been so excited to have a support group started as a result of just this one chat! Awesome!

I'll right everyone next week about what we need help with... plus I REALLY NEED an Angel Coordinator!!! Anyone interested in working with me personally and helping to manage the projects??

Jill :)

[HazelEyesGirl]

I would love to be a NEwie Angel.. Ive been throught it all I know all about ic.. how to direct newies. Ive done it in real life I go to a support group 3 times a week.Let me know.....

[icsonja]

Jill, I'd love to be your right hand woman, I need things to keep me busy so just say the word and I am yours! I am pretty good at organizational skills (12 years of PTA)
Sonja

[green_the_fish]

Hey, Jill :)
Do you think you could use me as a Teen Angel? I'd be glad to help!

[Babs RN]

Jill,
I would love to work directly with you as the Angel coordinator! With Lindsey in school, I have been looking for something worthwhile to do with my time. That sounds perfect!!! Please consider me for the position!

Hugs,
Barb :grouphug:

[Dixiefireball]

Hi Jill,
I would love to be able to help you by being an Angel Coordinator. That would really help keep some unwanted time off my hands. Just tell me what I need to do to help.

[traceann]

LOL, you can count me in too, jeepers, how many angel coordinators can we have??LOL!!! ;) I just want to feel useful and think (shoot, I know it does! ;) ) it would bring me great joy just to help someone else out, let them know my experiences and maybe learn from them that there is always hope - any time I can give someone hope is a good day for me! :)

HUGS!

[Romans8:28]

I would also been interested in helping. I would really like to start a support group in our area. My URO is the only one in town so all the IC patients here go to him, so I probabaly would have to talk to him about it! Since I am the first patient in town to do home instills, they called this week to get my info to start another. I really want to ask the nurse to give her my # to help her through! I see them tomorrow, I afraid it may be a little more intense appoinment, but hope to at least ask the nurse about sharing my #. Could you share with us exaclty how we would start a support group?
Would we actually start one on our own or under ICN? I like the idea of actually meeting about twice a year, with lots of phone and e-mail support in between..., you have been a support group leader, what works best?
I am also interested in writing some articles and am working on the one preservative free instill meds. currently! Things have been crazy but hope to get it done this week!

[emilyrose197377]

I would like to be a newbie angel.

[dancemomof2]

Jill with some help I have family that runs a radio statio here in WV and would love to get PR work out there, wiht your help of course. and would comsidered co angeling the holiday angels I will pm you my number

[mayray518]

Jill, I can do telephone support in the evenings if anyone needs someone to talk to. If you will move me out to Santa Rosa I will work for you every day (ha).

[Tina K]

I would love to start a support group in Maryland, could you help me on how to get started with that. I would love to lend a hand to those who are having a hard time and could use the support of others going through the same thing.

Feel free to contact me!

[JenG]

:) Jill,

I would love to be one of your Angels of the Airwaves! I don't have a PR background, but since getting ill I have been writing congress, insurance companies, doctors, etc., and would love to continue, to help out the ICN.

Let me know if there is anything I can help you with. I am off work now and staying home with the kids full time, so I can work from home on whatever you need. :angel:

[Casi]

Hi Jill, I would like to start a support group in Maryville TN and/or get our message out to newspapers, TV news, talk shows, etc.
I have known about my IC since Mar '05 and have severe IC. I'm 26 years old, my whole life is ahead of me and I often want to end it b/c of this stupid disease. That may sound harsh, but Im sure most inderstand. I have a husband and a 3 year old son. Maybe if I helped others I could better help myself. this disease is so depressing and so lonely. I work a full time job , I should say I'm supposed to work a full time job, but I'm out all of the time. my intermitent FMLA is almost exhausted and our ADA cooridinator wants me to try for disability. I don't want to go on disability, but fear I may have to. I feel like such a failer if I do that I want to work but simply getting up and getting in the shower and getting dressed every morning is pure hell most days. I haven't been very positive lately, maybe I'm the one who needs help here. I really do want to help others though. Im crying as I type this, I need to get involved. I want to fight and keep on working and go to work everyday despite the pain. Im so thankful fo this site. I would really like to do something. In Knoxville (20 min away from here) there is a support group every other month, but I would really like to start one in Maryville, b/c for diff. reasons not everyone can go to the one in Knoxville. I swear just writing you this I'm starting to feel better. Ive been in bed for 5 days straight, the new (50mcg instead of 25mcg) duragesic patches are making me vomit and Im still in pain. I want to help others. Right now if you could just give me hope or send some hope my way I would be greatful
Please Please write back Jill, I tried the bladder instills for 6 months and they didn't help and I'm still taking ELmiron and don't feel it's helping. I wonder if I should start instills again, I do home instills and am thinking about doing one in a minute, what could it hurt? I have my own home, but have been staying with my mom for the past 2 days, she used to be a nurse and does the istills for me. Right now I feel like I'd do anything to make myself better. I hope I don't sound too negative I just absolutely dislike this disease, it sucks. I almost feel like giving up b/c nothing has been working, but I know this disease takes work, there are no off days with this. I coud type forever, but please email me back and if anyone else wants to its appreciated . Ifeel as if Im at the end of my ropes and somthing's gtta give. I can't live life like this.
I really hop to to hear from you. Thanks for reading my loooong msg! God Bless you all who fight this everyday I admire that. :angel:
I tried to add my signature, but it didn't add, I don't know what I did.
My current meds:
Effexor 150mg 2x
neurontin 300 mg 3 x
elmiron 100 mg 3x
klonopin 1 mg 2x
hydroxyzine 50mg 4x
percocet 10/325 every 4-6 hours as needed
Duragesic Fentanyl patches 50 mcg

[icsonja]

:kissing: Casi, Im not Jill, and will never be as good as her at this, but I read your post nd my heart went out to you, you are right, I have many times thought of ending my pain once and for all, but thank God I have not. I have the support of a loving family and my IC friends and God and that keeps me keeping on.
For me, I got mad, really mad, at this disease and its control over me, I am using this anger to search for help for myself and others.
I understand about the pain patches I was on 75mcg Duragesic every 12 hrs and it was awful,put me in the ER, where they said I was ODing on pain meds and gave me Narcan(that is what they give heroin ODs( it was really a bad time. You need to check the FDA has put out recalls and warnings about patches , I know there was an annoucement about it on the home page here on ICN, but look under Pain managment on the boards and the very first one is about pain patches and the FDA warning, check it out, I was among those withthe faulty patches and idnt have any idea.
I do instills as well, sometimes they help alot and other days they dont :headbang: . That is part of IC, it is not only individual, but is different for many day to day, and there comes the frustration and depression.
Please join with us at chat on Mondays or Tuesdays it helps me sooo much and I never log off without feeling better, I always get a laugh, which is much needed and it is great to just talk to people who really understand.
You are 26, yes you have your whole life ahead of you and it will get better, you may have to work at it, but it can, I promise.
So Amy email me if you want at icsonja@sbcglobal.net and I would love to talk with you. It helps me to be of help to others, so don't feel that it would be a bother, it isn;t in fact it is an honor.
Your Sister in IC,
Sonja

[icnmgrjill]

Hey Casi,

Call me and let's talk! I'm in and out of the office this week... but would like to see if I can help! Plus, you've got exactly the desire... and that's half the battle!

Jill

(707)538-9442 - ICN offices

[icsonja]

HI all, I couldn't figure where to post this so I chose a board that is being read alot, sorry if it is in the wrong place.
But I have been doing some browsing around and came up with these stories that all are about IC, you may have seen them already but if not here are the addresses to read them
First is one from ABC News Health Matters web addy is www.abc.net.au/health/minutes/stories/s1350170.htm
next is wwww.MedicineNet.com (story title: New Hope Against Chronic Pelvic Disease)
third http://www.tribstar.com/articles/2005/06/16/features/health_and_fitness/health01.txt
last, but not least, www.iol.co.za (title:Cystitis raises risk of Depression-Study)

I hope the addresses are right, if wrong let me know I will re-check them.
I am going to search some more. I printed all these out and I am compiling a folder of any IC related story, if you find one please send me the address or how I can get it. Thank you, I am hoping with more and more stories being done, that a major Paper or TV show will sit up and finally take notice of us. Lets bombard them with information, let them see what and who we are!!!!
Sonja :woohoo: :woohoo: :loco: :loco:

[traceann]

Thanks for the links Sonja!!! ;)

Hugs!

[jaime15]

Casi,
There is support for us Maryville gals.........at the University of TN, in Knoxville, a group of IC'ers meet in a conference room. If you want, e-mail me and I'll have the group leader add you to the list so you'll be contacted ahead of time for the meetings.
Take care!

[icsonja]

Any one living in West Texas or the Panhandle or South New Mexico, we are trying to get a support group up, since we will be covering a huge geographical area, we will probably be online meeting, but we want to work as a grass roots orginazation to educate the Doctors Nurses, Hospitals and clinics (especially the many rural ones) about IC and it's symptoms and treatments.
We (me and a IC sister in Lubbock, you know who you are!! She is shy :) are really wanting to do this, so please contact me at icsonja@sbcglobal.net subject line TX IC.
And we need advice about a letter to send out, what it should say and what not to say , etc. Also any recommendations about literature, I wish we could send a book to each Doctor, but we have a budget of, well, we don't have any money to have a budget,lol/ So any help from other group would be helpful.
We are hoping to be able to give Doctors flyers and/or put them up in the offices, can anyone send me drafts of ones they have used?
I know I am asking ALOT from evreyone, but I promise it will be put to good use.
IC is almost unheard of in these rural areas from the medical profession to the potential IC sufferers who don't have clue about what they may have, and are not getting properly diagnosed due to ignorance by the medical profession about IC.
The two of us in the group have had to explain IC to every medical professional we have dealt with. Which is why I travel 400 miles to get care. It is a shame that we cannot go to a ER anywhere in 400 miles and find a soul who knows what we have. (Though many "think" they know, and when the RX pad comes out for yet another unneeded antibiotic course, it makes me sad.) So we with your help are trying to fix that situation.
Has anyone tried phone confrences w/ DR.s? We have such a huge area, I am hunting ways to cover it.
email me with ANYTHING that might help at icsonja@sbcglobal.net
Hoping and praying to find more IC friends for our fledgling group,
Sonja
PS; I swear this started out as a short reply, it just kept coming out of my fingers , apparantely I am unable to stop talking and so I just keep going and going...................................help, I may need my batteries pulled out. Now I am laughing and typing and the PS is the size of a post....throw water on me. maybe I'll melt!!!
Bye, truely it is I swear, I am finished
Sonja

[icsonja]

:biglaugh: :biglaugh: :biglaugh: :biglaugh: :biglaugh: :biglaugh: :biglaugh: Oh, laughing at "quick reply" button. Think I should look up meaning of quick.
Sorry all :bow:

[Amyinagony]

I would love to help out too. :)
I think everyone here is an IC Angel already. There is always so much concern, so much support, so much help, and SO much love on this message board from everyone.
Sonja-you're too funny. LOL!

[hoping4acure]

Jill,

If it's not to late, I would like to be a newbie angel. Since I announced my remission, I have been getting emails left and right. I love talking to newbies and encouraging them. It feels so good to know that I have made a difference in someones life and to know that I will always be there to listen, support, or just talk.

Thank you, please let me know.

Louann

[vm]

That's great, Louann. :)

[pandahbebe]

i would love to help with teen angels. it is really hard, i'm newly diagnosed myself. i'm not sure that i completely understand everything myself or am completely coping yet.. but i think this would be a good way for us all to start.

i actually stopped going to school for awhile because making frequent bathroom trips became too embarassing for me.. it hurt more than you can imagine. i'm back in school though.. one day at a time

[Casi]

Hi Jaime15!!
Here’s a quote from my post:
In Knoxville (20 min away from here) there is a support group, but I would really like to start one in Maryville, b/c for diff. reasons not everyone can go to the one in Knoxville.
I appreciate you inviting me to join in the support group you go to.
I guess there are a few in Knoxville then, because the only one I knew about was the one at UT Medical Center (where my uro is). I work in Knoxville 5 days a week and I don’t want to and I’m not able to come all the way back to Knoxville for a support group. There are various reasons why I wouldn’t be able to come to Knoxville and I know there are others that are the same. That’s I want to have one in Maryville, it would be so convenient for many with IC, a lot of ICers can’t get to Knoxville for various reasons, like I said above. And for some reason I feel very strongly about starting one in Maryville and it’s been weighing on my heart for sometime to do this, so I’m going to try and see what happens.
:angel:

[icsonja]

:bow: :bow: :bow: :bow:
:woohoo: :woohoo: :woohoo:
Jill is this wonderful or what? I have cried and laughed and most of all I have never been so proud to be a part of such a wonderful group of people!!
It is a humbling experience and one that shows just what my quote says, that "brothers and sisters are born when we have distress' you are my brothers and sisters (ihave none of blood) and wow you are amazing.
I am in awe, and speechless at this outpouring of love. (and that isnt easy to do..
Love to you all, Sonja

[traceann]

Know what you mean Sonja, I too am basically an "only child" (I have a half sis whom I have never met yet and just found out about 3 years ago), so it's like one big family I have never had!! LOL ;)

[chris_marie]

Hey Jill, my name is Chrissy, and I just joined this cite. I am 20 years old, and having just recently been a teenager dealing with IC, I would love to be a Teen Angel. If you could give me some info on what to do or how to help, I would love to make a difference. I would love to be there for someone...give them what I didn't have.

Thanks,
Chrissy

[hoping4acure]

Good Morning Jill,

Just wondering if you still need newbie angels...I will more than happy to help in any way I can. :)


Thanks.
Louann

[Dusty]

I'd love to do the IC angels for the holidays. I have done programs here and taken part in the Marine Corps toys programs. I feel very child should needs a gift and the whole family. This is an area that Coloradians are so good at..helping those that need.
Let me know when this starts and how we do this.
Thanks,
Dusty

[Dixiefireball]

Dusty get in touch with Jamie or email Jill at jill@ic-network.com. Either one of them should be able to tell you how to help out.

[jaime15]

Dusty,
Email me at holidayassistance@ic-network.com
And I'll add you to the list! :)

[Lori Campbell]

Hi Jill ,
I just started a support group for the Phila. , Bucks , and Doylestown area . I started being diagnoise in 2000 . My story is long complicated and scary . I have not really told my whole story to anyone . In 2004 , one of my last severed flare up , I was looking for support , first I started with a referal to Dr. Helen Coons , who had a hard time returning my calls for help . Finally in 8/04 , she told me it would be best to find a therapist in my area and to go threw my insurance , which I did . I started to see a male therapist , then in 9/04 , things got worse . I switched therapist and I also started hypno. therapy for pain . Well it was not until I found the I.C. A. , 1-800-help -line , that I started to go on the computer to get info. , insight , and knowledge . So in my next flare up I connected to , Linda McFarlene , who use to run the support group in Doylestown . I also read the story of Beth Getz , and the important roled she played in the Phila. support group . Her husband and her were an inspiration to me . After talking a few times to Linda , then meeting Linda and Camille , in Doylestown , I got enough info . to start to make the phone calls to get peoples input of when and where they would like the support group to meet . So that is why I picked Warminster Hosp. ,and alternating Fridays , 7pm. -9pm. , and Sundays , 2pm-4pm . Tomorrow will be our 3rd. meeting , I even put ads in the Trend , the Notheast Times and the Intelligencer , paper in Doylestown . I hope we have a nice turn out , especially since , I have a guest speaker , and another woman there with her message table to offer Rieki and intergrated energy work on anyone that would like to participate . I never knew of your web site until I met Kim at the conference in Arlington Va. She came to my 2nd meeting , she and another Kim ,arethe ones who put the info . about the meetings on your website . I would like to be more invloved . I use to be self employed . The last thing I did is I was a clown . We did a show at St . Christophers' Hospital , at Easter Time for the kids . We did little skits , dance ,entertain ,face painting , on the kids at other shows . I did promotional work for Circut City , at the holiday time , worked with bands , and with , Out on the Town magazine . I even worked with MTV, on thier Pepsi Pop Culture gig , in Seaside , N.J. So I would llike to work with you doing P.R. I use to love doing this , but I use to perform , but that is why I stopped . I would like to get back to doing this kind of work . As you volenteer with projects , it helps you to feel you are alive and worthwhile indi :woohoo: vidual . This helps you to redefine who we are now . Individuals with I.C. , that can help others and ourselves . My home # is 215-428-3862 , and my cell # is 215-801-3862 . Let me know please , I like to help and do more then I am now . Thank you JIll , this web site has helped me more in the last 2 weeks then the I.C.A. ,could . You are an amazing indidvidual , Thanks again ! Lori

[burningbright]

I'm not sure if this still applies, but I'd love to be a Teen Angel. I'm 20 and in college. I went through HS with undiagnosed IC, so I have a lot of experience I would be able to pass on. Plus, I'm pretty friendly. haha. Let me know. :]

[Dusty]

Ok..I will do that. I haven't been on here for a few days. I just remarried after loosing my late husband to cancer. My hubby has been home the past few days during the day as he is on swings right now..and I don't get on the computer when he is here. I like to be with him and since my late husband died of cancer I know how precious time is and I try to be with him and enjoy our life. I will get this information down and if not please pass my name on to Jill or whomever for that ..thanks,
Dusty

[Imustpee]

Dusty..I lost my sons father to cancer in 1991.....my son was 5 at the time...I too have remarried....

[Dusty]

It is scarry isn't it..as you think this man might get sick and die soon too?
My hairdresser lost her husband to cancer and she just remarried also and she said she
is always afraid he will die to. She asked me if I ever did get scared and I said yes. She said I feel so much better knowing someone understands how I feel. As my friends don't. I said well I have been there.
I am sorry you lost your hubby. It is very hard isn't it. Very hard.
Remarry after that is scarry..and you value your time even more so.
I am so sorry this happend to you also. I am also so glad you found someone too.
Makes life a little easier to go through with someone by your side.
My new hubby is a real sweetie..we married in Sept of this year.
Best of luck to you,
Dusty

[Imustpee]

Yes, it was scary...we have been married for 13 years now...my son is 20 and in his 2nd year of college...my late husband had just turned 40...it was very hard..he had kidney cancer....his mother passed away last week...she never forgave me for remarrying and we didn't talk much..I am still on good terms with my sisters in law tho..

[Dusty]

I am sorry about that. I guess I feel that God doesn't want us to live out our lives all alone really. In my case HE brought this wonderful man to me. He is so much like my late husband in his feelings towards family, his wife and so on. So loving and caring. He is very home orienented. He married me knowing I have all this interstim damage and that it is worsening. He didn't care. It bothered me more than him. He cared about me and said the medical problems are a concern for me and my well being, but not for him and how he feels about me. I feel very fortuante. Because with all the medical probs I have I never dreamed I would ever remarry. He said he loves me just he way I am. I am so sorry about your mother-in-law. I am sure she just never understood. You were still very young and had a small child. You deserved happiness once again if it came along for you. So I am glad it did. I know my late husband is happy for me too. He said before he died even that he hoped someday I would consider that and go on. It is hard though as you love them. I always say the lost of a husband is not like a divorce as you did not choose to part. They had to go. So you still love them and think about them. We have my husbands things and his military things about our home as my new hubby has no problem with that. He says talk about him and whatever as he is not threatened by it and he knows I loved him very much. I feel very fortunate to have this new hubby. I am happy for you as well.
Life is short and happiness and what we do for others is important.
Dusty

[Imustpee]

I still think about him everyday....

[Dusty]

Me too and that is ok.

[Lori Campbell]

hi Imustpee,
Just want you to know I run a support group . On 11/11/05 , we had a hypno.-therapist , she gave me extra information sheets and cd's , for relaxation ,and I even have one for surgery. If you are interested I can send you this, you can keep the relaxation , cd and audio tape , just send back the surgery cd.This was very helpful for my surgeries I had in 11/04 and7/05 .I also know someone who after her bladder removal she is doing great ! She has been in remission and has been doing great for 10 years . She only had 2 kidney infections and she is very happy she had the surgery done . Her name is Karen French , her # is 814-364-1822 , shse is glad to talk to anyone concerning this issue .
Good Luck and warm wishes for a healthy and quick recovery,
Lori :)

[greyrabbit2]

I'd love to be an Agnel on the web! :angel:

Diagnosed w/IC Feb 1998
Bladder Distentions
DMSO Treatments
Bladder Neck Polyps Removal Surgery
Endometriosis 1980; 1981; 1983; 1987, etc
Fibromyalgia

Onset IC 1992 Moderate; 1985 Mild
Bladder Pain/Incontinence/Frequency
5+ Urologics/OBGYN

Medications
Elmiron
Amitriptyline
Urised

Am I qualified to be an Angel?

Have I been through enough suffering to be a member?

I have been known to write letters to Congressman concerning IC to get us more funding and more research, and especially educating doctors more about IC. They need to quit trying to eliminate diagnostic testing for IC patients from and make all services covered under insurance. :bow: :biglaugh:

Thanks for being there for me.

Diane

[Dusty]

Diane,
Sounds like your already and angel. Good for you.
Can I ask you also what is...urised?
I am like you and I write letters to Congressmen and women and to senators and so on concerning interstim and the damage occuring to those of us from it. In hopes that someday they will also react and get more out on the problems related to interstim.
I am behind anyone that writes or calls to get good causes and medical information out there. I am glad your taking what is our right as citizens of the United States and acting on it. So many people do not realize we can write and call our congressmen/women and our senators. That is exactly what they are there for.
Congratulations that you do.
Dusty

[Babs RN]

Now that my life is starting to assume some sort of control, I will contact everyone who posted on this thread. I appreciate everyone's willingness to volunteer--it is awesome. I will start getting in touch with people starting tomorrow.

Hugs,
Barb :grouphug:

[DebbieD]

I would Love to be an Angel Just Let me know what to do okay.

Hugs
DebbieD

[Lori Campbell]

Just got told that we most likely will have to get gift certicates for the I.C , people that can not get out for the holidays . But I would like to see ,if we live close to them go and see them and maybe get gifts the need for the kids and wrap it for them . What do you think ?
Happy Holidays to you all ,
Lori

[Lori Campbell]

Hi Jill and Jamie ,
I wanted you to know I sent the gifts out for Melissa , for her 8 & 10 year old daughters . She sent me a Xmas card to let me know she got the packages . So at least you know now that is one successfully done . Thank you for letting me help . Let me know if you are definitely going to have support group leaders able to get feed back from one another , and also after the holidays , I would like to see if I could help with promotions or any other events to help the cause . It has been hard though , for some reason I have been having alot of insomnia ,and alot of lack of energy . That is why I haven't been on the computer very much . Plus when I am on the computer I start to get spasms in my pelvic area . So I have to limit the time on the computer . But I am hanging in there and I still want to be helpful to the cause . I want to do more then just run an I.C. support group . Maybe someday you can give me a # , so I can call you , I do have an idea for our cause , that could give information as well as generate income to the association . WE can discuss this after 1/8/06 . Again , you are great people and I like working with you . Have a Very Merry Christmas and a Happy , Healthy New Year !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!
Hugs,
Lori Campbell