Inspire, by Valerie Harper

I try to inspire, influence, and give meaning or hope. This evening as I am watching Nightly News I see a story on Valerie Harper, Valerie has incurable cancer and was told she has months or maybe weeks to live. So I am inspired… At the end of this persons life she refuses to quit… Valerie is on the up coming season of Dancing With The Stars, and she is doing it to inspire folks that have incurable illnesses that their life is not over just because of that fact, they have incurable illness and some may be dying. She is doing it to show that even sick, even at the end of your life you may and probably do have much to give, for what else is there but to inspire, influence and to give???? Valerie Harper has given, influenced and inspired me, I hope in a small way I can do that for you, even though I’m not dying, just by pushing on, not quitting, despite incurable and pain!!!!

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The World Wide Web, Social Networking, Mothers and IBD. A tribute.

With permission from my friend MB…

The World Wide Web, Social Networking, Mothers and IBD. A tribute.

by Marybeth Lonnee on Monday, September 24, 2012 at 2:04pm ·

 These are some of the most important gifts I have received from the world wide web.  At the same time my world has become both bigger and in some ways actually quite smaller.

I can remember back in 1980, walking into my first meeting ever of The Minnesota Chapter for Crohn’s and Colitis, an overwhelming feeling of community.  Oh my gosh.  I thought I was the only one besides my high school friend Mary Ruth Wagner who founded the Minnesota Chapter, that had Crohn’s disease.  There were tons of people!  All of a sudden we were all identifying with others, yes others who walked into the same bathrooms as we did every day and spent a whole lot of time there.  People who understood.  People who wanted to find a way to pro-act for themselves. There were also lots of family members there who showed up wondering how in the world to pro-act for their loved ones.  Around the same time,  Personal computers were just coming out into the market and the world was changing and it was easier to find people with like interests.  We developed support groups, and started raising funds, never ever loosing site of the fact that our community was growing larger each year and never losing one bit of hope that a cure would be found.  Being involved in a community of people who shared similar experiences made us all feel like we had people to talk to, to lighten the load of our family and friends who were also trying just as hard to cope with the fact that their loved ones were so desperately ill.

Fast forward to early 2007, the Internet was blooming and social networking sites were starting to pop up.  My Space started and then my college kids started using Face book, but they told me it wasn’t for Moms.  The Internet all of a sudden became the best resource in the world to find out what was or wasn’t happening with research for Inflammatory Bowel Diseases.  I was doing a search one day and came across a site called Wearecrohns.org.  I was member number 17.  It was a place made in heaven. I was hooked immediately.  I had found “my people”.

 I had just had to “medically retire” and go on disability to maintain a better quality of life after a very rewarding career in teaching. I missed the daily interaction with students and other faculty.  I had just spent a couple years seriously ill and was feeling a bit better and very ready to interact with people again.  Going from a career filled with talking and teaching too many people on a daily basis to virtual aloneness was difficult. I was feeling better but very lonely. I immediately became friends with people all over the world and of course the United States.  The people I met became friends.  Really good friends.  Lasting friends.  Friends that you long to invite over for a cup of tea, but they can’t because they live in Canada or Australia or England, or Chicago, or Seattle. 

But we did drink tea together on-line and it became just like our friends were right there with us in our living rooms, kitchen, beds, and toilets….( gotta love a laptop ).  We have done bowel preps together, tried different drug therapies at the same time, reported on diets, and fads, and explained procedures and have shared some of the most gory pictures of our surgical scars, and stomas, and fistulas, and ports.  I started helping people with cooking questions and it blossomed into myself making cooking videos and inspirational videos for the members so they could put a face and a voice on my posts.  We have shared our personal lives with each other and held each other up through out flares, and dating mishaps, and doctor appointments, and the waiting.  

There is always lots of waiting in our lives, so we shared time with each other during that.  And that is when we really got to know each other. We had groups for everything; groups for the emotional aspects of dealing with IBD, groups for Cronin’s, groups for colitis, groups for different kinds of medications, groups for diets, groups about laughing at ourselves and our diseases, groups for new on research and groups for parents and friends and families of folks with IBD. Our community grew and grew and I met more and more absolutely wonderful people.

 A lot of these people were Moms.  Really awesome moms.  Dad’s too.  And sisters and Aunts and children of IBD patients.  But some really cool Mom’s who were there to learn everything they possibly could to pro-act for their son’s and daughter’s who had Crohn’s or Colitis.  Committed Mom’s who wanted and demanded more information than what they could get at their doctors.  They wanted to know other patients experiences.  They wanted info from a patient such as myself who has lived a great life despite the Crohn’s to tell them that everything would be OK.  I couldn’t always do that, but I tried to be as positive as I could with them and I never minced words about the realities of living with long term chronic illness.  I deal with reality only.  No sugar coating from Marybeth.  Just straight facts and a lot of advice that was learned over my own personal 40 year battle with Crohn’s disease.  

These Mothers wanted to know how to pro-act for their child and what questions to ask.  These Mothers reminded me each and every day how lucky I am/was to have a Mother like them.  I have lived for over 43 years with IBD and my Mother, God bless her heart is still alive.  And so is my Dad.  I do not know what I would have ever done without them during this long journey.  The hours these two precious people have put in, just at the end of my hospital bed is mind boggling.  But it is what you do when you are a Mom or  dad.  It’s difficult to explain the bond that you have with your Mom or Dad when you are ill, but its intense.  It’s a beautiful thing.  It doesn’t mean that they do not love their other children any less, but until you become a parent yourself, it’s so difficult to comprehend the heart break and enormity that is having a child diagnosed with an incurable disease.  It makes every life experience just a little more poignant because you know what a struggle and triumph it is to get to these places.

 I met Mothers from all over the world.  I met a lot of Mothers that were around my age or a tad younger.  I met Mothers who had IBD as well as their own child or children in some cases.  I met young women with IBD who wanted to become Mothers, and watched some of these women have children of their own.  Not only did these Mothers of IBD patients and I become friends, we become dear friends.  Girlfriends. The miles and miles between us, disappeared somewhere between our keyboards and computer screens and all of a sudden, there we were, virtually drinking tea together and chatting about everything that girlfriends do.  We went through our children’s or my flares together, we prayed together and most importantly we laughed together.  Our lives became meshed together as if there were no distance in miles between us.  We were part of a vital loving community.  We were part of a group of people who both laughed and cried about poop and were not embarrassed to do so. We updated our group with news  right from emergency rooms and hospital rooms.  

Friends and family would come on-line to report on a members progress when they were unable, as did my own Mother after I almost lost my life 4 years ago when I had extreme complications from my port and had to have emergency open heart surgery. And a lot of patients without family, a lot of us became Mother’s, and sisters and brothers to those who had none.  We became extended support systems to each other.  We made ourselves into a true and loving community.  I was honored to have been the site maestro, and I will never forget the love and acceptance I found at WAC.  Somehow I became everyone’s hero, when at the same time; each and every one of the members became heroes to me.

 After 3 years WAC closed due to financial issues, became infected with malware, and one by one we all started to join Face book.  While we were happy to re connect and continue our interactions with each other there, it was simply not the “safe” haven WAC was.  Our “normal” friends are confounded and puzzled about all this talk of poop. They find it embarrassing, and quite frankly so we do.  It’s not all we talk about, but sometimes, ya just have to.  Face-book just is not conducive to putting your medical details out there, although it is excellent for advocacy. Many different secret groups were formed where you could speak freely, but it just hasn’t been the same.  Except for the unity, love and friendship we retained from WAC and the lasting friendships we formed while there.  That is the glue that keeps us together as a community.

 It makes my heart simply smile when I think of instant messaging chats I had with Moms of patients.  Right off the bat I met Brenda Hines Dumont, Mother of Lejla who had just been diagnosed with Crohn’s. Brenda was from Medicine Hat Alberta, Canada. She was hungry for every last bit of info she could get about Crohn’s and how to advocate for her daughter. We became extremely close right off the bat due to our many similarities and interests.  I met Sue Dorroh from California, who is the mom of DJ. When I met Sue, her son DJ was also recently diagnosed and very very ill.  His story paralleled my story back when I was in high school and that made my heart go out to Sue.  And through that we too became very close friends.  I met Lynn Durbin who was the Mom of Jennifer Gurley who is also a Crohn’s patient. Although I became friends with Jennifer, my interactions with Lynn warm my heart.  I met a young gal by the name of Taylor Brooks right away and then met her Mom, Marilyn Reed.  I met Becky Butler Connel and her Mom, ……both of whom also had Crohn’s. Her Mom passed away about a year ago and we were all there for her. I even got to meet Becky when her and her husband came to Minnesota to vacation and there is not a day when I wished I lived right across the street from her.  I just recently met Maureen Heather from New Zealand, through Brenda, who is the Mother of three children, two of them with Crohn’s disease.  All of these women, including my own Mother, Elise are Super Moms.  Moms with love so large they would give their own lives just for a simple day with no pain for their child suffering from IBD.  I also met many women who became wonderful Mothers who lived with Crohn’s disease.  Our ties that bind were that most of us were told we could not have children, and we did.  I was able to share with them how I managed raising my girls through flares and resections, and home TPN and eventual disability.  These Mothers with Crohn’s and Colitis are Super Moms of the greatest kind.  They have started families despite the diagnosis, and I have watched them blossom.  Women Like Taylor, and Heidrun, and Lisa, and Robin, and Lynn and Rachel, and Sherri and Shirla and Addriene.  There are so many more.  And there are women who long to be Mothers, but just are not physically able right now because of the seriousness of their health.  And there are other women like Kristan, and Francine, and Sara, JoAnna, Jilly, Oka, Jill, Jenn and Kristy.  Strong women who are trying to live as large as they can despite their challenges.  These women are my internet girlfriends and hero’s.  Please know there are just as many wonderful men I have met and made friendships with.  I have just as much love and respect for them.

 This week my small tight loving community on the Internet was shattered by the news of two totally unexpected deaths of two very special Mothers.  This past Monday, we were all sent an email by Brenda Dumont, telling us the very sad news that Maureen Heather had passed suddenly.  She did not know the details and we all wrote back and forth frantically trying to decide if we should say something “on-line” right away.  It’s not like you can find out quick from family for someone who lives across the world and halfway back again.  We wanted to be as appropriate and loving before we posted any information. Brenda had also developed a strong and loving relationship with Maureen and this summer and had even hosted one of her sons who were in Canada.  I spoke with Brenda a lot on the phone and she was always in admiration of Maureen and how she raised her boys.  She thought the world of her and was simply devastated by this news.  And the rest of us who knew Maureen were too.  All we know today is what we know from Maureen’s Obituary.  We all grieve for her family.

  HEATHER, Maureen . On 16th September 2012, (suddenly) at her home Dargaville. Dearly loved wife of Ted. Loved mother of Jared, Ryan and David. Loved step mother of Koral, and Donna. Loved grandmother of her many grand children. Aged 57 years. RIP. Her Funeral Service will be held at Sacred Heart Catholic Church, Hokianga Road, Dargaville on Friday 21st September 2012 at 11:00 am followed by Interment at Redhill Cemetery, Te Kopuru. All communications to 839, Te Maire Road, RD 1 Dargaville 0371. Hart Funeral Services Limited FDANZ Dargaville.

 My extreme and sincere condolences to Maureen’s family. She left us far too quickly, but left an imprint all over the world of love and kindness.  A Super Mom, indeed.

 And then just a couple days later, another Super Mom was abruptly taken from us. Right out of the blue.   Brenda Hines Dumont suddenly and tragically contracted meningitis and died almost immediately from it.  Our small community all over the world is weeping.  We are so very saddened as a collective group around the world, and we are so stunned, we really do not know what to do about this.  Stunned doesn’t even begin to describe our loss.

 If anyone were to have an Internet bff, well, Brenda would have been mine.  And I am proud to add that there are some other women who feel the same way about their relationship with Brenda.  She was a true friend to many. She was everyone’s Internet bff. 

But most of all she was a Mother that you did not want to get in the way of. She was a force to be reckoned with.  Brenda was a Super Mom in every sense of the word.  She loved her precious daughter Lejla fiercely and completely.  If she had her way, Lejla would not suffer one second longer than necessary.  She would find her daughter the best doctors, the most effective medical therapies, and she would create as comfortable a life as she could for her daughter.   We became immediate friends and we spoke so often about my journey with Crohn’s, so that she knew Lejla could have a good life.  Brenda would call me for advice all the time and we would talk for hours. When I would answer my phone and a melodic voice on the other end would say” Hello Gorgeous” and I knew I had better get comfortable because we were going to have a nice long conversation about everything.  Brenda absolutely loved hearing about my daughters and my grandchildren. I quite often would post a picture of one of my grandchildren on her page so she could have a smile first thing in the morning with captions that read ” Good Morning Auntie Brenda”.  For a couple years, until just recently, I was always impressed by all the hearts she left as comments.  I couldn’t figure out how she did that, and I called it Brenda magic!  I finally learned how to make a heart, and every time I make one I think of Brenda.

If Brenda was not out advocating and pro acting for Lejla, she was doing it for others. Many others.  Brenda wasn’t a casual friend.  She was in it for keeps.  And if she was your friend, then she was going to try to help make your life a bit better, some how, some way.  Quite often, I would get messages from her telling me about various people she had met on the Internet and could I please friend them and answer their questions.  She knew us all very well and would send these messages to her friends that she thought could best help this friend of hers.  So, you knew if you were getting this message from Brenda that you were probably the best resource for this new friend.  And so it went.  Brenda has friends all over the world.  Friends who have such emptiness in their heart from learning of Brenda’s tragic passing.  Friends, though through their wonderful memories of their interactions with Brenda will have a heart bursting with love and memories of her forever.  Our hearts are sad right now, but mine is beating stronger for having known her.  We will all miss the little hearts left on our profiles in the morning.  She never missed a birthday and always left images she selected just for her friends.  She loved people’s photographs and left countless comments but always apologized for loving them so much that they filled up your news feed!  She spent a lot of time each day” checking in” on people she knew were struggling, with no more expectation than to put a little smile on their face.

Brenda’s love of her daughter Lejla, and her two nephews was huge.  She had a huge heart and had room in her heart to love everyone.  She left a trail of smiles where ever she went, whether in person or on the Internet   she made me feel special every time she addressed me saying “Hello Doll”, or “Hello Gorgeous”.  I always giggled when she called little babies ” wee ones” , and simply embraced and loved the way she spoke about things that made her so very unique.

 The sudden loss of Brenda has completely thrown myself and her friends across the world off.  There are no words to express each and every one of our deep loss.  No one ever sits down at their laptop thinking that there mere presence on the Internet is going to make a difference.  How can one person out of the entire World Wide Web touch so many lives?  It’s not something one sets out to do.  But Brenda did that.  And so much more.  

She always made me think of my mother.  That in turn made my admiration for my own Mother even richer and more evident. Her actions as the Mother of Lejla commanded the same love, admiration and respect for my own Mother.  Her kindnesses to others that I witnessed day in and day out were always done out of love and respect for others.  

She has left us a legacy that we all as her dear friends and loved ones will continue to emulate in her honor.  We will make that tiny bit of extra effort every day to put a smile on someone else’s heart.  In her honor.  We will reach out to others, others we don’t know and help them find information that will assist and empower them to live as well as possible within their medical situations.  And I think each of us in our own way will always be there for Lejla, whom Brenda shared us with.  We still want to see pictures of Lejla dancing, visiting, having fun and living her life.  We want her to be able to pick up the phone and like her Mother, ask what we think.  We can never replace the love of a Super Mom like Brenda, but we can hold Lejla’s heart in our hands and never let her forget how dearly and truly her Mother loved her and wished for nothing more than health and happiness for her.

When I think of Brenda, I will call my Mother to tell her how very much I love her.  When I think of Brenda, I will give my own daughters and grandchildren extra special hugs and kisses.  When I think of Brenda, I will reach out to my amazing friends I met through WAC and hug them virtually.  And when I think of Brenda, I see a Mother on the other side trying to orchestrate a cure for all of us down here.  I have this sneaking suspicion that her days of advocating for all of us IBD’ers has simply changed locations.  She has the will, so I know she will find a way. It can’t hurt to have such a fine advocate on the other side!

 I have had the great Honor and fortune to meet in person some of my dear friends from WAC.  I have met Glen LaBoyne twice and he is like my brother.  The only difference between Glen in person, rather than on-line is that he is even nicer in person.  If that is even possible! Just as I know everyone else is. We had always hoped that Brenda and Sara and Glen and I could meet up together around the Canada/Washington border.  That would have been brilliant!  But just this summer Sara and Brenda and Lejla met and had the most delightful time and we all lived vicariously through it. 

Brenda of course was high on my list to meet, but I never made it.  That will have to wait.  Until then I take delight in the fact that I will continue meeting more of my wonderful friends in person.  But even if that doesn’t happen, I have the most delightful friends a woman could have right at the end of my fingertips on my laptop.  That makes me the richest woman on earth.  Besides the complete shock and angst over Brenda’s passing, something wonderful has happened on-line.  Folks are leaving messages to each other telling how much they love and appreciate each other. People are realizing how precious life is, to life each moment to the fullest and to be sure to express your love and appreciation to others.  And if that isn’t a wonderful legacy, I don’t know what is.

Now, go hug your Mother.  Hug your Father.  Your children.  Your friends.  These are our biggest fans and supporters, and quite often the people we forget put up with a lot from us sickos. They need to be thanked.  And to all of these supporters, you too are the Brenda and Maureen of your family.  You are as revered and respected as these two women we lost this week.  We are scattered all across the world, but our little community is tight and strong.  We are so blessed.   

Rest in peace girls. We know you are still with us, but we will miss you dearly.  The saying about how people come into your life for a reason, a season or a lifetime.  I know these wonderful women fulfilled this many times over for all of you who read this.  How blessed we are to have been one of their reasons.  Take the reason, the season or the lifetime that both Brenda and Maureen shared with you, keep it close to your heart and go forth and do the same for others.  Pay it forward and we will never ever forget these two Super Moms.

 

Marybeth Lonnee

9/24/2012

 

IBD ANGRY

Angry

 This is just a little note talking/explaining one of many emotions myself and many of the folks in the IBD community feel.It’s very hard to have a disease that was caused by a defect in a persons genetic make up, a disease we did nothing to get except for being alive, a disease for which there is no cure or explanation, a disease where frequently when you ask your doctor a question they reply with a “I don’t know”.

 Yes I am angry, in fact I’m mad as hell. Why am I angry, well because of all the stuff that happens to myself and my friends that have Inflammatory Bowel Disease.What does it do, well first of all IBD is a very painful disease, very painful.There are days that I am so sick and in so much pain that it is a major accomplishment just getting out of bed and dressing ones self. If you make it to work while you are pain you are generally miserable.

  I am angry because of the many gross and disgusting things that have happened such as soiling myself, or having to stop along the road to prevent soiling myself. The nausea and puking are just miserable, nausea is a new symptom for me. Then there are the fistulas… A fistula is extremely painful and terribly gross. What they are or in my case,is an abnormal tube that begins in the rectum and comes out elsewhere in the crotch. A fistula drains fecal matter and puss 24 hours a day year round. 

 Angry yeppers, I am angry because this disease p aces so many limitations on my life and the lives of my friends with Crohn’s or ulcerative colitis. Limitations caused by uncertainty that I can find a loo quickly enough in public, limitations caused by severe joint pain. Joint pain that greatly impairs things I want to do such as playing my guitar or work my garden.

  I’m bitter that I cannot have ice cream, angry that I can’t have salad, frustrated that I can’t eat popcorn or any corn products period. It’s tough to be woke up several times a night with need to go to the toilet or with leg cramps so severe the only way to calm them is to sit in a tub of very hot water. It’s very upsetting when someone say things like”But you don’t look sick” “I wish I could loose weight and eat what I want” “I think it’s all in your head”, “I understand I had the stomach flu/IBS once”.  Yes this is a complain session because I’m angry.

 I don’t like the road Crohn’s disease has put me on, it has unleashed the world of auto immune on me and that makes me angry.Since becoming ill with Crohn’s I’ve contracted several other auto immune diseases. I have Crohn’s related RA, enteropathic arthritis,eye problems and most recently Ankylosing Spondylitis. I really hate what Inflammatory Bowel Disease has done and the pain it cause my friends that have it. It is not a fair disease I/we did not ask for it and did nothing to deserve it, so yes  I am angry

Josh Robinson

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