Welcome to the Journey of Hope Blog!
This blog has been created for Sufferers/Survivors of Hyperemesis Gravidarum. I have created this blog in dedication to my Sister, a Survivor/Sufferer of this violent illness.
She will be embarking on a charity run/walk this summer, trekking from London, Ontario, Canada, to Toronto, Ontario, Canada. We will be using this blog to post about her/our experiences through this expedition, as well provide an outlet for other Sufferers/Survivors to join together to spread the word, share the love, and offer support to others.
What is Hyperemisis Gravidarum? Here are a few links to give you more information:
HER Foundation - Hyperemesis Education and Research
NORD - National Organization for Rare Disorders
Wikipedia
BBC Health
Medline Plus
She will also be organizing a charity dinner to be held in Burlington, Ontario, Canada, so if you are interested in attending, please contact Janis via email at cosmo57@hotmail.com. She is still in the beginning stages of preparing for this, but she will keep your information and contact you when she has more details, and we will also be posting updates here at the Journey of Hope Blog.
I will be organizing the Journey of Hope Craft/Art Sale effective immediately. I will be accepting donations of any form of artwork that you would like to contribute. ALL money raised in this initiative will be donated to this cause. If you would like to donate or have any questions, please feel free to email me at amber@blurrzone.com.
More to come, this is just the beginning! Thanks for your support and thanks for visiting!
2 comments:
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 5 months. I lost 46 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
Testimonials
The Voices of HG from Around the World
All around the globe, HG women are speaking out.
Physical Effects of HG
"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."
"I am a nurse. My first pregnancy, I had HG the entire pregnancy, barely treated resulting in IUGR. My last pregnancy was severe. No food for about 3 months. I lost about lbs in 2.5 weeks. The only thing that kept me going was knowing each minute I stayed pregnant, was one step further ahead than if I aborted and started over. It is a never ending battle of wills between my desire for more children and my medical knowledge that another pregnancy could be catastrophic to my health." Yvette K., RN, Colorado Springs, CO
"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."
"I lost 10% of my bodyweight and as of now, 33 weeks along, I am still 18 pounds below my starting weight." Ruth, Newport Beach, CA
"[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 lived on my bathroom floor with my down comforter over me or in the hospital getting an IV... My life turned upside down... I went from a vibrant, happy, loving, spontaneous, career driver type A personality to essentially - nothing." CR - Mill Valley, CA
"[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
"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
"I felt that during my pregnancy my body had betrayed me and that I would never have the family I dreamed of." C. H., Colorado Springs, CO
"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
"When I was around 3 1/2 months. I [started] TPN. and stayed on it until the day my daughter was born. I lost about 25 pounds. I literally didn't eat or drink once my [TPN] line was put in. [just] ice chips to wet my lips.." Garnet C., Davenport, IA
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
"I'm on short term disability but I'm waiting to be fired at any moment. This of course just adds to the stress. Friends and family try to understand but they think I have just a case of morning sickness"
"I wanted this baby but it's been so long since I felt that because I've been so sick that I can't even bond with it."
"After the pregnancy I really crashed, I was having full blown panic attacks."
"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!"
"Emotionally I was hurt that in the waiting room at the OB's office everyone who was pregnant and "typical", looked at me like I had leprosy. Aimee-Ohio
"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
"With no family or support, we reluctantly put our daughter into daycare because I was unable to care for her." Danielle O., Knoxville, TN
"I went through several different emotions... I hated myself, the pregnancy, my life. I had panic/anxiety attacks because I felt so trapped in my own body. I felt like I was going to lose my mind." Danielle O., Knoxville, TN
"People stop calling, they stop coming around, they just don't understand and that's when depression sinks in." LJ, Australia
"I speak with my husband and think about having another child everyday... Others say often, "it's only 9 ½ months" but if they could have seen me, or what those surrounding me went through then, maybe just maybe they would understand. 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!"
"My insurance will only pay for Zofran one month at a time, and only after I tried a lot of other medications that [were not] effective. After the second hospital stay, I guess they discovered paying for Zofran would be less expensive than another hospital stay." Jessica Z., Lenexa, Kansas
"I almost died due to inadequate care."
"[I] went completely unmedicated because my doctor kept saying 'It gets really bad before it stops! Come back in two weeks!' over and over and over and over!"
"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."
"I was vomiting up to 70x a day... and received fluids but no medication. Routinely they would wake me up at 3 o'clock in the morning to weigh me. During this. a nurse actually suggested I have an abortion. [The doctor] told [me] to. eat mashed potatoes. I was sent home with a pamphlet on nutrition for pregnant women, the physician was not at all empathetic and gave me a pseudo lecture on what to eat and what not to eat, as if I could eat at all!" Marcie H. Denver, CO
"The doctor did not want to prescribe [medication] "because I didn't seem too sick yet". This was very upsetting because. my mother and grandmother had both been very ill with their pregnancies." Lori D., Belleville, Ontario
"I was questioned by my midwife and therapist that maybe I "didn't want this baby" and that I "wasn't creating a healthy environment for her to grow in me". I was too sick to fight back. Now I am too scared to try again." Juliette, Warminster, PA
"I was not diagnosed until my 2nd pregnancy. The doctor/midwife just kept telling me "it'll get better." It wasn't until I was entering my 4th month and I had lost 15 lbs that they said, "You really were sick!" Then they finally prescribed me some medication. The first 2 doctors I spoke with had a 'wait and see' approach. That is, let's wait and see just how sick you get." Jo Ann D.
"My plea to the world of non-HGers: quit suggesting crackers! IT is really frustrating that there is such lack of awareness that even some health care providers will recommend things (like crackers) that may help for regular morning sickness, but are like suggesting a band aid to someone with a broken arm. I lost 10% of my body weight in about 6 weeks, have had so many IVs for dehydration that I can't even count. The suggestion of crackers is insulting." EG , Seattle, WA
"[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
"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 have been much more assertive in this pregnancy to ensure that I received the care that I needed and my experience has been much different-still challenging but doable."
"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. Providers continue to treat it as a psychiatric condition or, worse, do not even acknowledge that it exists. If people understood how to recognize it early, perhaps women would not be faced with decisions such as whether or not to terminate their pregnancies, or whether or not to ever have more children." Tristin C., RN, Mobile, AL
"If I would have had an IV at home that hydrated me I would not have needed to be admitted in the hospital and things would have gone much better than they did." Maria F., Round Rock, TX
"I was constantly worried about the baby. Why wasn't my doctor prescribing IV fluids. I hadn't gained a pound. the resentment of my ob/gyn fueled me to change doctors, throw away the useless prescriptions and aggressively take my health and my baby's health into my own hands. However, it was too late. I suffered a 20 week loss of my son. I think we desperately need to expose this issue, so that suffers aren't misdiagnosed and mistreated by family and friends, doctors are more informed and more remedies are developed to help the women who endure this illness.." Cynthia T., Baltimore, MD
"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
HER FOUNDATION
A Need for Help
"I have had 5 unsuccessful pregnancies in a period of nine years. I had my gallbladder removed and had pancreatitis due to the severe HG. I went from weighing 125 pounds to weighing 98 pounds. I do not even know where to get help. I really want to experience being a mother."
"I am terrified. and praying every night that this won't happen to me again."
"I would have liked someone to talk to who knew what I was going through. I think that would have helped a lot because none of the doctors understood about HG."
"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."
"You are screaming inside 'HELP ME' as the doctor is explaining this will all pass in X number of weeks. I feel like I'm dying a slow death."
"Please for the sake of my daughter there must be help for this, I truly am saddened to think she will have to go through what I did to have her own child." Aimee, Ohio
"I hate that this disorder makes me PETRIFIED of pregnancy, that it has to be so life altering, that I have to feel so sick for so long. Every day I think about HG, I feel like I am not the same person since I have endured so much, dramatic as that sounds." Kendis L., Sea girt NJ
"[I]t breaks my heart to see women come to the HelpHer forums after just terminating a purposely conceived, highly desired pregnancy, only to see them realize that with better medical care, personal education and family support they could have endured the pregnancy, being, in fact, only a few weeks from being over the very worst of HG... it is the greatest injustice there is in HG: the woman who finds hope to survive HG days too late - after the termination..." HER Forum Host, Andrea T. Idaho
"[E]veryone told me I would forget all about [HG] the minute they put her in my arms, but they were wrong. It is. forever in my head. was it all worth it? I am torn. Nothing can compare to the love you have with your child. but to say it was all worth it is something I don't feel completely comfortable saying." Angie N., West Orange NJ
"Our home health care costs were around $70,000! I was unable to work . We still carry the burden of debt accrued." Danielle O., Knoxville, TN
"My husband just didn't understand how I couldn't just "stop thinking" about the nausea. It was horribly scary for my daughter." Anna, Laguna Niguel, CA
"[HG went] undiagnosed and all I was offered was Phenergan and bed rest. I missed 2 months of work. I was wrongfully terminated for missing so much work, causing me to lose my income and my health insurance mid-pregnancy. Ruth, Newport Beach, CA
"The only information I found was online [about HG]. was after I'd had HG. I didn't know what was wrong with me. I felt. I was dying of some weird illness. Doctors need to be more aware. and more understanding." LJ, Australia
"I entered this pregnancy believing that pregnancy was a healthy and natural life change and not an illness. I couldn't go to work. my husband had to help to bathe me because I was so weak. since I lost over 30 pounds. my father [came daily] to care for me and. take me to my appointments. my sisters shopped for food." Juliette P., Warminster, PA
"My employer was not understanding at all. I was told that I was disappointing my team members because I would be at work for a few days, then in the hospital for a week, then back at work for a day, then in the hospital 4 days, etc." Garnet C., Davenport, IA
"It has been hard to be a patient with HG because so little is known about the origin and treatments for HG. [We have] looked at the studies on treatments that have been done. Many of them have small sample sizes and as such are statistically insignificant. That leaves women with HG to experiment with their bodies and that of their unborn children." EG, Seattle, WA
"If I go into a store and pick up a plastic bag to have something to throw up in if I am too far from the restroom, they might suspect me of shoplifting, just like if I run to the restroom." Jessica Z., Lenexa, Kansas
Help from HER
"I want to say thank you from the bottom of my heart for organizing this web-site. When this is over I will dedicate my life to helping women with HG. I have found my purpose and will never take my health for granted again."
"Support is just so crucial for women with HG, because HG is viewed so skeptically by people who don't know about it."
"The website was a wonderful source of information, support, and comfort for me."
"I feel empowered by the information from the HG website."
"I felt like a failure and a prisoner in my home.What helps more than anything is knowing there are others out there [who understand] what I am going through."
"I've heard the term "HG" for the first time thanks [the HER Foundation] when I was 5 months pregnant... when the worst was behind me." Virginie M., France
"I think lending a helping hand would definitely help my healing process, and at the same time help other women suffering with this condition."
"Thanks for setting up a serious web site so that maybe more health-care professionals could possibly become a little more serious and aggressive about alleviating the miserable state that hyperemesis gravidarum is for so many."
"The joy of impending motherhood is ripped out from under you as you try to basically survive this and it can become a life threatening situation. I was thrilled when I found the [HER] website because there was nothing out there. I found support, and people who could say "Oh, I know what you are going through, it happened to me!" Women who took the time to talk to me and tell me I wasn't going crazy how I can help myself." Susan C., Bethlehem, PA
"So many women have been impacted by HG, the HER foundation is a home to find that support and information that we so desperately need." Marcie H. Denver, CO
"[I was] scared to do it again but I so wanted another baby. The girls at the HER Foundation gave me the strength and encouragement. and I cant thank those ladies enough. Without them my darling baby girl wouldn't be here. Jacqueline M., Ireland
"If it were not for the forum of HelpHER.org I would have no data about my condition or how to cope with it." Cynthia T., Baltimore, MD
"The HER website has been a life saver! It has critical information that has helped me advocate for myself in the medical system, and I have really appreciated being in touch with other women who know exactly what I am experiencing." EG, Seattle, WA
"I can't say enough how much I appreciate the HG website. I have gotten so much support and information from it - that I don't know what I would do if I hadn't found it. I wish that. I had found it sooner. Maybe if I had, it would have woke her or her doctor up as to how serious HG could be. This just proves that more people need to be aware of this life threatening disease." Serpil
"Had I not had the support of my family, an educated doctor, and the website I would not have the beautiful children I have today." Sarah U., RN, Sunprairie, WI
"I have suffered MUCH stigma about HG. The HER website has helped me educate family and friends on HG. I have helped 4 women. realize that they had HG and went undiagnosed/untreated. I just want to thank you immensely for the HER website and message boards-they have helped me through my darkest times-times when I considered abortion, times when my OB was not giving me good treatment, times when I didn't think I could go on living with HG and felt no love for my unborn baby. The women I've met through this website will forever be close to my heart." Ruth, Newport Beach, CA
"[The HER website] has provided me resources that I cannot find anywhere else, and gives me a place to refer those I love to so that they might be able to somewhat understand." Jessica Z., Lenexa, Kansas
Updated on: Aug. 09, 2006
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