Journey Of Hope - Helping to pave the way for HG sufferers

The HER foundation contributed letters from our forums members for a show that featured Hyperemesis as a topic. The show aired in April of 2007.

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Journey Of Hope - Helping to pave the way for HG sufferers

Postby JourneyOfHope » Feb 27, 2007 8:20 pm

Dear Dr. Phil,

I am writing to you, like all these other women, to tell parts of my story in the hopes of getting some real help. We have all suffered with a pain that I can only describe as heart shattering. I have had three experiences with HG, none successful. No words could possibly explain the overwhelming saddness I have felt trying to heal. There is an emptiness that will never truly heal as I accept the fact that I am terrified to ever try again.
Though I have many memories from the illness, I will tell the ones that stand out in my mind with such vividness that my heart aches now even two years after my last attempt.
I believe with everything in me that I would be dead now had I kept on trying.
The most painful memory stands out with my third attempt. I could not make it past 4 months. I lost approximately 40 pounds. I was throwing up blood and bile at least 30 times a day, and for the last few weeks had blood not just trickling from my nose in nosebleeds, but spraying out violently as I wretched. All day and night.
At first I was suffering at home, trying several medications. None worked, not even the one I had to administer myself by needle into my leg and arm muscle. I was weak, unable to even think about eating or drinking even a sip of water, and unable to get a handle on any of it. I was on 4 medications in hospital. They managed to get my symptoms under control at about 3 months for 2 days and told me I was fine and should go home. The only reason I was fine was because I had a chemical soup being fed to me through I.V. So when they took me off everything, all at once, after only 2 days of peace... of course a few hours after being removed from medication, I was even more violently ill than when I had originally gone in to hospital. They could not get me stable again.
I would dream about swimming through a sea of orange juice when I could manage to fall asleep at all... I guess my body was so dehydrated that it started telling me I needed vitamins, liquids, nutrition.
They hooked me up so I could hear my baby's heartbeat, and it was beautiful. I felt such a saddness knowing that with the way things were going I wouldn't make it and knowing I would have to choose. I can still hear my baby's heartbeat now. I will never forget it.
One afternoon, I went to the washroom to splash some water on my face, got dizzy, sat on the toilet to stabilize myself, and woke up in the bathtub beside me. I rang the call button, and nobody came. So I pulled myself out and crawled to my bed on my hands and knees, crying and dragging the IV machine behind me, too tired to walk and no energy to stand, I sat on the floor by my bed and waited for someone to come, and cried. I called my mother and told her I knew I was dying and asked her to help me. The helplessness she must have felt.
At this point, I couldn't sleep because the motion in my mind from my dreams would send me into fits of wretching for hours.
I ended up terminating my pregnancy out of what I thought was necessity to save my own life due to lack of proper resources. After leaving the hospital in wheelchair, I concentrated on physical recovery. It took a week and a half before I could really even swallow water, or anything else because of the pain, due to rips in my esophagus and lesions and tears in my throat lining. Even a full year later I developed problems with my gallbladder.. I've since learned is due to the illness.
The second attempt left it's own set of scars that fuels me now to do something about the injustice these sufferers were, and are still faced with. I was sent a psychiatrist while 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. It makes me sick to think about. How could the medical profession that I came to for help kick me so hard while I was down? I even had a nurse angry with me for throwing up after she'd given me an entire dose of gravol through I.V. (Gravol made me feel even sicker... and I told them that, but surprise, they didn't believe me).
I far from received adequate care and resent being told I didnt want my children. Having a doctor pat your leg and tell you you are a wasting use of the hospitals beds as "there are a lot of other people much sicker than you dear", made me feel horribly alone. As one Emergency ward doc put it after observing me for a total of 5 minutes and taking no blood and conducting no tests.
It's taken me two years to be able to talk about it. Now I have vowed to myself that I will do whatever I have to do to spread the word and help as many women suffering with this illness as I can.
On June 24th of this year me and best friend will be walk/running from London to Toronto, Ontario, ending at Sick Kids hospital where a helpline is located for women suffering and their families. This is all to raise money and donate it to HG research. It will take 6 days, 50 kms per day, 5 kms per hour for 10 hours a day. We are calling it 'The Journey of Hope - to help pave the way for HG sufferers and their children.' We know its not as far as some others have gone for other illnesses, but it is as much as time will allow for now. I would walk around the world and back to find a cure to end this needless suffering. That will be followed by a fundraising dinner in which I am trying to gather as many guests as possible. Dr. Phil.. would you like to come? :)
I thank the HER foundation with everything in my being because after losing 3 children, it was the only place I could find that told me, without a doubt, I am not alone. There are no words that can express my gratitude. There are others. It is not in my head, and I did and do want my children, and I pray that I have even a quarter of the strength as Anne Marie and her co-founders have, so I too will be able to fight right along side them to help even just one woman.
Thank you Dr. Phil for any help you may give us. Please help separate fact from fiction with this illness once and for all... We need to be told by a medical professional that it is not just a figment of our imaginations, because the pain is so real it is absolutely unimaginable.

Sincerley and forever grateful,

Janis Moher
London, Ontario. Canada
(519)933-5148
Last edited by JourneyOfHope on May 30, 2007 6:45 am, edited 1 time in total.
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Postby JourneyOfHope » Mar 01, 2007 2:42 pm

If you are interested in taking part in some other ways to raise money and support, please see the Journey of Hope - Walk, Dinner and art sale posting set up by my sister. Or maybe think about walking or attending the dinner yourself... thank you so much.
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Postby Irene » Mar 01, 2007 3:12 pm

:hugs: Your story is horrific! I am so sorry for your suffering and loss. Thank you for sharing. I would walk with you if I could!
Emily Ann 05-2004 Severe HG
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An Outside View of HG

Postby Amber101 » Mar 01, 2007 3:54 pm

I have been there for my Sister through three excruciating cases of HG. I am thankful she is still alive, as I know she would have died if she did not take action into her own hands and stop the Doctors and Nurses from allowing her slow death to continue. Her cases have been THAT severe.

Words cannot explain what it was like to watch my Sister, someone I love more than myself...my baby Sister go through what she has gone through with this illness. Words cannot explain the rage that I have felt with the medical profession in the way they choose to handle cases such as hers.

My Sister had to suffer alone at home with this very violent illness, unable to get out of bed, shower, make something to eat IF at some point throughout the day she thought she could stomach something. I remember her sharing with me one story that still haunts me the most. She was home alone, and she was so dehydrated, she knew she needed to force something down, even if it meant being sick for hours. She was so light headed that by the time she reached the half way point down the stairs, she passed out and woke up at the bottom of the stairs. There was no carpeting in the house to help soften the blow.

Where were we you ask? We had to work to make sure she had the financial backing that she would need since she couldn't. It killed me everyday knowing how sick she was and how helpless I was to it. She pushed on so hard and tried so hard to keep herself in good spirits. Even while being sick for hours, she would still manage a smile and keep on toughing it out. It broke my heart to see her in such pain, so sick...throwing up parts of herself over and over because there was nothing left in her stomach.

The severity is different with every case, and with my Sister, she suffered it to the extreme. Anyone that wants to challenge that will have to come through me, as I saw it first hand. ANY motion would set her off...just walking by her in her bed would make her violently sick. Loud noises, bright lights, ANY kind of smell...you name it, it would make her even more sick than she already was. She needed 24 hr care, and even that wasn't good enough.

I am so thankful that Dr.Phil is stepping in...a high profile, highly respected individual to bring light of this illness to the forefront and stand up for these Women, these Families that have gone unheard for so long.

I thank Everyone at the HER Foundation for taking these steps and I thank Everyone brave enough to share their stories in these message boards...to not let it go...to not forget. You are what will bring help to this very real issue for so many Women, their Mates, and their unborn Children.

In addition to my Sister's run/walk, I have kicked of a donation drive to hold a craft/art sale at the dinner that my Sister is planning. I can't go on the walk with them, so this is what I will be doing to help contribute.

Anyone interested in donating some of their art? Handmade creations? Paintings? Photographs? Whatever you've got, we'll take it! Please send me an email at amber@blurrzone.com. ALL of the proceeds raised from this sale will be donated solely to this cause, and any items not sold during the auction will remain up for sale after the fact, to continue to raise awareness and donations for research of this illness.

Thanks for reading this and thank you for your support! Spread the word, spread the love and help get this illness known around the world...please! :)

THANKS!!
Forever Hopeful
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Postby JourneyOfHope » Mar 01, 2007 3:57 pm

Even if there are only two of us that physically do this walk, all of us are there. We are all here walking together everyday.
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Postby JourneyOfHope » Mar 03, 2007 2:38 pm

50 people and counting...
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Postby justme » Mar 06, 2007 11:20 pm

I have had a hard time reading many of these stories and have finally came across yours. I am so sorry - and so very thankful for your efforts to help this wonderful site, without which many of us would be lost thanks to hg. I am so sorry for your losses.

God bless,
Karen
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Postby JourneyOfHope » Mar 08, 2007 10:01 am

Just an update...

The details are all coming together now, and the guest list is growing. I know it is hard for people to travel, but in case you are interested, here are the details. Please send me your e-mail address so I may send out the proper invites once they have been made up.

We will kick off the walk/run June 24th from London to Toronto, Ontario Canada.
Come and welcome us by meeting us at Sick Kids Hospital in Toronto upon our completion, on Friday, June 29th... we are working on getting media coverage of some kind.

Then the Dinner/Dance...
Journey Of Hope - Helping to Pave the Way For HG Sufferers
Dinner and Dance/ Art auction and Craft Sale
Where: Holiday Inn Burlington Hotel and Conference Center
When: June 30th, 2007
Craft and Art sale will begin at 4:00 p.m
Reception with Cash Bar 6:00 p.m.
Speeches and Buffet Dinner 7:00 p.m

I am currently working on getting negotiated rates with the Hotel, so will update when it is confirmed.

Please send me your email so I may send out proper invitation mass e-mailings. It will be a very exciting few days and one that is meant to be enjoyed by all.
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Where's the daddy?

Postby JourneyOfHope » Mar 11, 2007 8:26 am

I just need a spot to vent a little. I realised now that I never mentioned the father in all this. We have not been together for a little over a year now. We were engaged and planning a family.. and developed serious problems once all of this happened.
I got an email from him this morning telling me he had to confess something..he now has a 5 month old baby girl and sent along some of her pictures. I think maybe he is missing a sensitivity chip. Now I am having temporary feelings that somehow I am broken.
I wish I could have gone through all this with someone that knows how to stand alongside another person.
Just wanted to post this as an example of family relationships dissolving, in case it helps someone else out.
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Postby BethersinMN » Mar 11, 2007 9:37 am

I am so sorry for all you have been through. That is horrendous!!!! I too, have lost 3 babies due to mismanaged HG and poor medical care. Please know we all support you here and are so very proud of your efforts.

Thank you for being another angel I have found on this site.
God bless, :hugs: :hugs: :hugs:
Love, Bethers

p.s. is there a link where we can donate funds to your walk?? I was confused on that part. Please let me know.
p.p.s if you ever want to talk please pm me. Again, I am truly sorry for your losses.
BethersinMN- Justin 1/9/96 SEVERE HG (9 wks-36.5 wks) Ryan 4/18/09 (HG & Severe Preeclampsia and Hellp at 25 wks emerg c-sec 29 weeks) and 4 beautiful angels 05/21/04, 11/16/04, 7/28/06 & 10/6/12 forever loved with God & my parents till we are all together. We have begun another journey to bring another Baby-Love home. God please grant us faith, strength, courage, patientence and love through this each and every day.
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Postby JourneyOfHope » Mar 11, 2007 10:20 am

Thank you very much for that. As for donations, I am still in the process of figuring that part out. I will know all the details by the middle of this week. I may take you up on your offer to talk because some days I feel like I can't take anymore, and things just keep coming..
Lucky for me, I've learned how to just keep pushing through.

I too am sorry for your losses. Thank you for the support.
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Postby JourneyOfHope » Mar 31, 2007 6:18 am

I have been getting some questions about donations, so thought I would post an update...

Donation info can be found at www.journeyofhopeblog.blogspot.com
Cheques can be made payable to Journey for HG.
They can be sent to:

Journey For HG
247 Upper Queen St. P.O Box 234
Thorndale, Ontario
N0M 2P0

Please include your name and address as Sick Kids Hospital will be issuing tax receipts at the end of the year for donations over $20.

You may also pay through paypal. Please send money to JourneyforHG@hotmail.com. This should be a familiar process for you e-bayers out there:)

Thank you very much all:)
We can roll over and feel unlucky, or we can put on our runners!
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Postby JourneyOfHope » Apr 16, 2007 2:46 pm

So I went to the Dr. to get nutritional information to prepare for this run properly and told him what I was running for. His response? 'I've never heard of anyone running for THAT before. My wife had that, she was sick once a day...' Are you kidding me?
We can roll over and feel unlucky, or we can put on our runners!
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Postby simplekelly » Apr 16, 2007 7:42 pm

I think maybe he is missing a sensitivity chip. Now I am having temporary feelings that somehow I am broken.
I wish I could have gone through all this with someone that knows how to stand alongside another person.
omg. :twisted: :twisted: :twisted: :twisted: he absolutely does NOT know how to stand alongside another person and never will. gosh. i am so mad for you.

and that drs comment really shows how ignorant the medical profession is regarding HG. and that's just sad. and irresponsible of OB's to not know about HG.

thanks for all you are doing to help get the word out there!!!

:hugs: :hugs: :hugs: :hugs: :hugs: :hugs:
Kelly
mama to
Jake (1-9-02) MS to wk 13
Justin (6/13/03) NO MS!
Addison (2/16/07) HG wk 8-birth
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