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