Who Are We? 
When my children Joshua and Sarah were still toddlers, I became ill with
a rare and incurable disease called interstitial cystitis (IC).
Overnight I went from being a typical 26 yr. old mom to a depressed,
crying, in horrible pain mom.
Since that day in early 1991, my children have learned something I
already knew from past experience. Life isn't fair. What this disease
has done to me isn't fair, and what it's done to them isn't fair. They
are often disappointed that I can't go along on field trips, or stay at
all day events, or ride bike with them. The fact is, I am pretty much
housebound, and it's their father who takes them on hikes, to birthday
parties, swimming...
Joshua is almost 13 now, and Sarah 11. They see me in pain, taking
handfuls of pills everyday. They see the heavy toll IC has taken on
their parents' marriage. And yet, we are still together, the 4 of us.
The commitment Chip and I made to each other almost 15 years ago is
there still. The children have travelled down this bumpy road together
with us, but the important thing is that they've seen the loving, too.
Before the babies came, I had never even considered the possibility that
I could be a disabled mother. Parenting is hard work. And when you live
with never ending pain, and the resulting depression, the job becomes
that much harder. But wev'e learned some good lessons along the way.
Here are just a few of them:
1. Take life one day at a time
2. Dwell on what you CAN do, not on what you can't
3. Don't judge others. What you see is not always what IS
4. Helping others takes your mind off your own troubles
5. Love each other
6. Have compassion for others
I pray that IC has not damaged them emotionally or spiritually, rather,
that Joshua and Sarah will be shaped to become whole in every way. What
mother would want that her children should face hard trials? Yet, as we
pass through the fire, we are refined as pure gold.
~%~Terry~%~
My name is Wendy. I am mother, a wife, a cook, a maid, a nurse, even a mechanic or electrician if needed. I am also very sick. A year ago I was a full time Manufacturing Engineering Coordinator working for a GM manufacturing plant. I had a career that was actually going well, I was a cub scout leader for my 9 year old son's pack and I was the mom that was always there at my 5 year old daughter's gymnastics and ballet classes. That all came to a screeching halt. At age 32 I was diagnosed with a fatal heart condition. I had been told this condition was just panic attacks until I started passing out last year. Within 3 days of diagnosis I underwent heart surgery. And then 2 more surgeries after due to complications. Now I am plagued with a condition called Congestive Heart Failure. Sound familiar? I got there differently though. Most people with this condition are much older than I. I was attached by a simple virus, something like an upper respiratory infection, nothing major. The major factor here was that for so many years my heart was being over worked and it was weak so a simple virus was able to attack it. Now I no longer am able to lead my son's cub scout pack, and I am notalways at my daughter's events. My children now 10 and 6 have had to take care of mom at times. But we have found ways of spending time together and now that I am at home all the time they see me more. Although there are times I am sure they wish we weren't seeing so much of each other. If you too are a parent and have ever been sick then you know we get a bit cranky!! I will see my children grow up and become parents because I am determined to do that. I will grow old with my husband because I am determined to do that too. I will also be there to give a friend a uplifting word when they are in the dark parts of their lives because I have been there and I know that it can be very frustrating and very scary and none should have to go through this alone. And even when you are surrounded by family and close friends sometimes you are still alone because they are too close to the situation they too are hurting. Okay maybe I ramble, the point is People like us can learn and help each other through the tough stuff.
Take care of yourself and those you are required to take care of will get the care they need because you will be there.
My name is Romane.My story for a father's input. I am not an author, so my style is a little abridged, as you will see.
I am male, now 47 (almost 48), married with a gorgeous wife and adorable daughter, and now have an ileostomy as a result of Ulcerative Colitis. I live in Brisbane in Australia.
I started bleeding from the anus when I was around 18 or 19. On my first contact with a doctor I was told if the bleeding got worse to come back. That began a period of years where there was nothing, followed by periods of bleeding. Nothing severe, enough to notice. Why bother with a doctor when they weren't interested or going to do anything?
Got married when I was 30. Clear at that time. Couple of years later, bleeding began again. More examinations, a sigmoidoscopy, and treated with suppositories. More a discomfort and an inconvience, though on one occaision, when I was flatulant at work, I unexpectedly followed through. Embarrassment, mess. All-male macho tough-guy environment, so picture for yourself how I felt.
Then 11 years ago, I was about 36, and began bleeding in earnest. My wife took me to a specialist. He lied to me about the drugs he prescribed and admitted it when confronted, so instead of following through with a diagnosis (hey, who trusts a liar), I saw a Naturopath. He treated and controlled the disease without actually saying "You have got...", but we all had a pretty good idea. Treated for near 2 years - BIG change in diet (which my family voluntarily shared with me), and herbs, one of which tasted so vile that every bottle I got I wrote the word "yuk" in texta in BIG letters on it. But the disease was controlled.
1991, no longer under treatment by the Naturopath, started bleeding again. Finally back to a gastroenterologist and diagnosed as Ulcerative Colitis. Then followed periods of bleeding, followed by periods of remission, the remissions getting shorter, the bleeding for longer and worse. Severe cramps when passing stool. Much diahrea and pain. Insecurity when going out. When I needed to go, it was NOW, not in 5 seconds or 5 minutes. NOW. Going to work on the train was a daily trauma - would I make it or not. The boss was told - I have an accident on the way to work, that's it for the day, forget it, I won't be in. I have an accident at work, I won't be coming back that day after I get home and clean up. The guilt - everyone else had to carry my workload for the time I spent in the toilet.
Treatment with prednesone, sulphasalazine, and finally we added imuran (an imuno-suppresant).
Family outings. What family outings? Ok whilst in (brief) remission. Otherwise, is there a toilet within 10 paces? No outings.
In November/December 1997, we lost control of the UC. Severe diahrea, sever pain, almost constant. Upped the dosage of the steroids again, back under control, start to decrease, blow out again. We finally worked out a dose to hold me steady, and arranged for surgery.
September 28, 1998 was surgery day. Just the feeling of wellness on removal of the diseased part of me was good. Now 8 months, and feeling great. I am not married to the toilet any more, but once again to my wife. We can go out for family days. No more drugs and the wild moods caused by the steroids. We can work together in the garden. I can attend my daughter's school concert, and take her places. And that is just the beginning.
You are reading this having just been diagnosed with a disease? Having just been faced with the choice of surgery? Wondering how the family unit will suffer for the treatment and the affects of the disease? You are not alone. The trick is to retain your sense of humour. The art is to stand back up when everything has conspired to knock you down. We, being all those who post in this area, have travelled or are travelling the road you are now on. Our unspoken support goes with you.
Hi! My name is Kelty and I have Chronic Active Lyme Disease. I'm a 31 year old mother of 3 from Massachusetts. Lyme disease is very complex and widely misunderstood. I have been infected for about 14 years yet only diagnosed within the past year. My symptoms are varied, but fatigue, joint/muscle pain, and cognitive delays are the most debilitating and have resulted in my current state of disability. I am a Special Needs/Early Childhood teacher and the Coordinator of an Integrated Public School Preschool program, or at least I was. I am currently engaged in a very aggressive treatment plan, including long term IV antibiotics. My oldest child will be 9 in July and he is so angry at the Lyme Disease. He fears that he will loose me. We find that being honest with him about our own fears and frustrations has helped to release some of his anger. My kids are young (8,6,2) and cannot always understand why Mommy can't go to their games or take them to dance practice, or run and play in yard with them. This is very hard for me. My husband is a wonderful man, and together we face the reality of complete changes in our hopes for the future. Illness affects the entire family dynamic, and I am lucky to have such wonderful supports around me. Part of that support is found at the PARENTING WITH AN ILLNESS message board. This board allows us to find strength in others with similar stories about struggling to be well and to be good mom or dad. It is such a wonderful place to share frustrations and joys. I look forward to "logging on" every day!
My name is Ellen from North Carolina. I am 31 yrs. old and have suffered with Crohn's Disease for over ten yrs. now. I'ts hard to say who I am, because I have not figured it out yet. I can tell you I am the mother of a 13 yr. old boy, I am the house keeper, the cook, the chauffer, if it needs to be done around my house, I do it. Sometimes I feel like I have no self worth because I do not work, therefore I am not a productive member of society. I have spent the past few years thinking of myself as a person with a disease, instead of just a person. The past year I have taken a long hard look at my life, and I am starting to realize that I am worth something. I am raising a happy healthy child, I am there for my family and freinds whenever they need me, I am trustworthy and honest and I care deeply about the ones in this world who cannot speak for themselves. I must accept that I can only make the best of what I have been given and stop wishing for what will never be. Hopefully this will help me to learn who I really am, instead of being the person I think everyone else thinks I should be.
*Please sign my guestbook. It makes me feel wanted!:)
