I wanted everyone to note that Ashli McCall, author of 'Beyond Morning Sickness' who generously donated 50 books to be sold at the dinner was spotlighted on CNN yesterday, Wednesday May, 30th. The link has been removed from CNN.com now, but I am working on getting a copy. I'll keep you all updated! YAY to more progress! Thank you Ashli!
"Pilot"
Walk of Hope – Family Raising Awareness for Rare Pregnancy Disorder
By Amy Woolvett
The Coastguard
On Saturday May 5th, Gerry Moher walked alone for 5 and a half hours to raise research money and awareness for a condition called Hyperemesis Gravidarum. A condition, his daughter Janis Moher suffered three lost pregnancies through. The walk from the Shelburne Municipal Building that raised $375 is a warm up to prepare for the much longer walk his daughter has been organizing in Ontario to take place between June 23rd and June 29th.
Janis, her mother, and two of her closest friends will be walking a Journey of Hope from London Ontario to Toronto finishing up the 230 kms outside the Hospital for Sick Children where a group will meet their arrival.
Gerry will be walking with them for the last three days of their journey, estimated at 50 kms per day.
Hyperemesis Gravidarum is a debilitating, potentially life threatening pregnancy disease marked by rapid weight loss, malnutrition and dehydration due to unrelenting nausea and or vomiting with potential adverse consequences for the newborn(s).
“Pregnancy should be a time of joy, not a time of pain, agony and dread as it is for the women who suffer from HG”, said Gerry Moher.
According to Janis, some of her Doctors looked at her extreme nausea as a psychological disorder.
Recently Dr. Phil had a show that spotlighted the condition and the medical professions approach to it.
Janis wrote her letter to the show explaining her own story and the lack of support she received.
“I was sent a psychiatrist in Hospital with my second attempt who would wait outside my bathroom door while I wretched to tell me I was overreacting. I was just pregnant and that I must not want my baby.” She wrote.
Her three attempts for a baby were fraught with extreme sickness and weight loss.
“I could not make it past 4 and a half months. I lost 40 pounds. I was sick with blood at least 30 times a day, all day and night.
It has taken Janis two years since her last pregnancy to be able to talk about it and now she has vowed to do all she can do to spread the word and help as many women suffering with the illness as she can.
She says more research is needed to go towards finding a cure and more education to the medical field on how to treat women suffering from the condition. She hopes her walk will do that, and all funds raised will go towards research and support for women with HG.
Following her walk, there will be a fundraising dinner to help raise funds. Janis hopes the money raised will help pave the way for future women with HG so they will not have to go through what she did.
“It’s an absolutely horrible situation. Pregnant women, very ill, being told they must not want their children or must not love their husbands when they are truly fighting for their lives. It is not morning sickness, and we are trying desperately to be heard.” Explains Janis.
She has found support through the website http://www.helpher.org/ where many women suffer similar stories and let her know she is not alone.
I have recieved multiple requests for information on counselling and 'in the know' Doctors available to HG Sufferers in Canada. Sadly, I have not found any one particular resource. My personal suggestion to get the care you need (and if you've experience HG you DO need it)...
1) Search for Grief and/or Loss counselling.
2) E-mail the name of your chosen Counsellor or Therapist to me at JourneyforHG@hotmail.com, including their FULL mailing address.
3) I will then contact Ashli McCall with the information, and she will send out one of her books with a letter from Dr. Wall.
4) I will send out another information package to the counsellor or therapist including pictures of all our efforts with the run and dinner and general info.
***(Please allow 1 month between the time you find a counsellor or Doctor, and date of first appointment booked for mailing time.)
This is an attempt to inform the medical community BEFORE you meet with them. If you come in contact with ANY medical practitioner that tries to tell you the illness is 'in your mind', or that you 'don't want your children', or 'must not love your husband'...ect...
DO NOT LISTEN and find someone else!!!! You know the truth, and we are here to back you up.
We will go through this process as many times as needed until you recieve the proper care. Hold your heads up!!!
Ashli McCall, author of Beyond Morning Sickness, has generously donated 50 books to be sold at the dinner with 100% of the sales to be donated to our cause. To learn more about this wonderful book written about her own personal experiences with HG, please visit www.beyondmorningsickness.com.
She has also offered to send a copy of her book, with a letter from her Doctor to any Canadian Doc. we can give her the name and address for. Please e-mail your Doctors name and address to JourneyforHG@hotmail.com , so we can spread the awareness to the medical community, and perhaps increase the level of care and understanding given to women sufferers. This truly is the ultimate goal. Thanks everyone!!!
From left to right: Kimber, The Doc, Ann marie and her husband Jeremy.
Thank you so much. We would have had nowhere to turn without you.
"Castle"
Hurricane
-Recoil-
Acrylic on Canvas
8x10
I can't wait to see what else she comes out with...I may very well be her biggest fan. ;)
"My 19 year old daughter died on March 19 2002. She was 13 weeks pregnant. and had been to the hospital twice the week before and diagnosed with Hyperemesis Gravidarum." - Mother of HG Sufferer
"I am terrified. and praying every night that this won't happen to me again." - HG Sufferer
I was hospitalized my entire pregnancy. I had to give up eating completely and was fed through TPN 24 hours a day.
At one point, my mother was taken aside and told to say goodbye to me and notify family members that I may not live until morning.
At seventeen years old, a picture of health and vibrancy, I was reduced to wearing adult diapers, using a wheelchair, my grandfathers walker and bedside comode and needing an electronic hospital bed to sit myself up to vomit.
It was torture. - HG Sufferer
I looked like a skeleton and felt like I was dead. HG Sufferer
"[She] has been bedridden in darkness - with no TV, no ability to read, barely able to talk, for the last 7 weeks. A steady and heartbreaking moan can be heard coming from her room. she hangs on, because she knows if she terminates, she will never have the courage/strength to try again." Gail, NJ
"[My OB said "It would be prudent for you to go on some psychiatric medication because this sickness is connected to your psychological condition." She then told the ER doctor to send me home-that I was fine and the sickness was in my head." Ruth, Newport Beach, CA
Just wanted to say a special thank you to my closest friends and sister who are always here to walk right beside me through life. Thank you Amber Moher, Melissa Wilk and Crystal Rieger...
Here's me loving you:)
"Even the most severe stomach flu could not compare to the horror I was experiencing."
"I weighed 96 lbs at one point and looked like walking death. I wouldn't wish it on my worst enemy."
"I made it only to the 7th week, then I ended it. I was violently ill. like nothing I had ever experienced before, I had very low blood pressure, 59/39 at one point, a uterine hemorrhage, and a kidney infection, and vomiting 15-20 times a day. I was on 6 different anti-nausea drugs, and they did nothing. I still can't believe how sick I was."
"My muscles have broken down from being unable to walk without vomiting, I fractured a rib, tore my esophagus, damaged my eyes and need ten root canals."
"I was in pain from the dehydration and bawling and pleading for some relief. I went 4 weeks without eating one bite of food."
"[At] 22 weeks. [my] PICC line was removed and I was eating broth and crackers for every meal. then I got preeclampsia and was put back on bed rest. Because of my deconditioned state I never really felt like myself again... I fell and broke an ankle.. and developed a blood clot in my leg. they feel I may have actually gotten when I [had] HG." Amber D., Waukesha, WI
"I was hospitalised [from] 5 ½ weeks [until] 17 weeks with admissions till delivery, the emotional [and] physical toll were horrific. [I was] vomiting 70+ times a day, nose bleeds, torn esophagus, burst blood vessels in my eye. I gave up work, couldn't walk, couldn't eat, and lost aprox 30 pounds. I looked like a skeleton and felt. like I was dead. I tried to slit my wrists at 17 weeks but something stopped me. There is no abortion in Ireland otherwise I would have. I was so depressed after having him I couldn't work till he was 7 months old. My son has special needs." Jacqueline M., Ireland
"Some family members and friends. said that I had an eating disorder because I could not control the sickness." Kristie R.
"I now have arthritis and some "minor" bone density loss. I have lost most of my hair during pregnancies due to malnutrition. This is with nutritional IV treatments." C. H., Colorado Springs, CO
Beyond the Physical
"I would sleep on the floor of the bathroom most nights. My husband didn't understand what was happening at all and got very irritated with me. I would just cry all by myself and other times I was too sick to even react to anything at all. I have never felt so alone in my entire life." M
"There just wasn't any point in trying anymore. No one could comprehend the sheer hell I was going through. I felt so guilty because I actually wanted a miscarriage even though this child was planned and wanted. This condition is very expensive and my insurance company actually called me at my home on several occasions to ask me when I would be getting better, as if I knew!"
"A close family member asked me if I was actually bulimic and was not eating on purpose. Another accused me of just doing it for attention." Marcie H. Denver, Colorado
"Every week the home health agency would call and ask how I was feeling and if I was ready to come off the PICC line all because the insurance company was pressuring them." Angie N., West Orange NJ
The experience is so raw and scary and yes the outcome is glorious but the journey almost killed me." CR - Mill Valley, CA
Medically Misunderstood
"My doctors accused me of having an eating disorder."
"[The doctor] told me it was a mental problem and. made me see a psychiatrist. He told me. that somewhere deep inside I didn't really want to have a baby!"
"I almost died due to inadequate care."
"My best friend (24 years old) died from what I believe was HG. She died over a year ago and her condition went 7 months undiagnosed before she died. Serpil
"I can not get any treatment for this, because my doctors are saying that this is mental."
"My plea to the world of non-HGers: quit suggesting crackers! That may help for regular morning sickness, but is like suggesting a band aid to someone with a broken arm." EG , Seattle, WA
"I had seen a dozen of doctors at least. They just told me it [happens] sometimes. and it could be psychological. The illness is nearly unbearable, but the negation of that illness is simply destructive." Virginie M., France
"Even after the child's catheter was rejected by my collapsing veins, we came to the realization that I was going to have surgery [to] have a catheter placed in my chest." Danielle O., Knoxville, TN
"I feel I took the 'easy' way out and ended up terminating my pregnancies, I am ashamed to admit. The emotional scars. are horrific, my life will never be the same. I can't afford Zofran. Surely it costs more to have a patient in the hospital than to reduce the cost of medication." LJ, Australia
"I was bounced from doctor to doctor who made me feel like I was actually making myself sick. They gave me oral medication (which of course never stayed down) and I had 13 [hospitalizations]. I felt like I was a nuisance to them and that they quite frankly didn't know what to do with me." Danielle O., Knoxville, TN
"I ended up losing my job and my life for nine months. was told it was in my head. little treatment was offered... at 6 weeks pregnant. all i wanted was the pain and sickness to stop and was told I would have to. terminate. I have grieved every day for that loss. with awareness. and proper [information] maybe people. [with HG] can be taken seriously and given proper care. doctors can do operations that you'd never think. possible, yet they cant stop [HG]. its heartbreaking, and soul destroying." K.N., Lancashire, England
"HG started around 4 wks but was not diagnosed until maybe around the 10th week. Here I am pregnant and taking Zofran a cancer drug for nausea and on TPN, another treatment for cancer. And the real kicker is they put me on the cancer floor in the hospital because the maternity ward was full...." Amber D., Waukesha, WI
"I also developed ptyalism and one doctor was so disgusted that I would not swallow my saliva he told me I had to and sat to watch, then left when the violent vomiting returned." Aimee-Ohio
"One girl. was admitted to the inpatient psychiatric unit during her 6th month because of HG. [HG] can be managed and treated if recognized.
"Each week my doctor had to communicate with the Insurance Company explaining why I still needed the feeding tube etc.for the first four months. Susie J., Littleton, Colorado
Thank you very much for the scrapbook donated by Scrapn4u... It is beautiful. Each page is a work of art!
"Heaven Said Hello to Me This Morning" 8 x 10
You are a wonderful, giving person, thanks so so much! :)Please send ticket payment and donations in the form of cheque or money order to:
Payments for tickets being accepted A.S.A.P so tickets can be sent out on time. Deadline for purchase is June 20th, 2007.
Journey for HG
Janis Moher
247 Upper Queen St. P.O. Box 234
Thorndale, Ontario
N0M 2P0
Paypal payments can be made securely at http://www.paypal.com/ and sent to JourneyforHG@hotmail.com. Include your name, those of your guests, as well as mailing address so I can send out your tickets.
Here are some details of the exciting events to come....
The run will begin June 24th, 2007 from the corner of Nissouri Rd. and Dundas St. in London.
We will be on the move for 6 days, and need to cover approximately 200 - 230 kms. (118 miles).
The finish line will be located at The Hospital For Sick Children in Toronto by the front entrance. Should any of you want to be there to welcome us in... Estimated time of arrival is 4 p.m.
The address at The Hospital For Sick Children is:
555 University Avenue
Toronto, Ontario
Canada
M5G 1X8
Details for the Dinner and Art Sale
Date: Saturday, June 30th 2007.
Where: The Holiday Inn Burlington Hotel And Conference Center
Price: $40 (includes buffet dinner and dance)
Ticket purchase info. to come.
4- 6 p.m. - Art and Craft Sale
6 to 7:30 p.m. - Reception
7:30 p.m. - Dinner and a Few Words
8:30 - ? - Dance
If Hotel reservation is required, please call the Holiday Inn Burlington's reservation co-ordinator at (905)639-4443 ext 4676, or simply ask for reservations.
Be sure to mention that you are with the 'Journey of Hope' group, and quote this block I.D number 53692 in order to get negotiated rates.
Note:** Any rooms not booked by Wednesday May 30th, 2007 will be charged regular room rates!!! Book A.S.A.P!
Thanks everyone!
Please help me in the organization of all this by putting a post in response including your name, number of guests and their names and contact info. so I can start to track exact numbers. Even if you are my best friend, mother, sister or father..LOL.. please verify your attendance here so I only have to go to one place for all numbers of attending guests:) Love you all!!!
I've had some thoughts swirling and buzzing about in my head this morning that I wanted to share here.
I'll be blunt: Woman don't HAVE to be able to have babies to be a Woman, and Men don't HAVE to be able to fertilize an egg to be a Man.
They are Women and Men regardless. It doesn't mean they are broken or they are faulty in any way at all.
For me, when I hear of a Woman who cannot conceive or who cannot go through pregnancy, the thought that something is "wrong" never crosses my mind. Different people can do different things. Yes, the majority of Woman can conceive and carry on through pregnancy, but that doesn't mean that ALL Woman can...just as not ALL Men can fertilize an egg.
I know it's a deep and meaningful subject for many, but I wanted to send a message out to those Women and Men who are having a hard time with the ability to conceive and have their own biological children...you are not faulty and you are not broken. Please don't let your inner dialogue tell you otherwise.
