Can you imagine waking up one day and suddenly you couldn't eat without getting horribly sick?
It all started on June 4, 2009, I opened my eyes and bolted out of bed nearly not making it into the bathroom. The flu? Well that's what I thought for a week or so but then it didn't go away. I saw my family doctor and he said I had a bad stomach virus, gave me an antibiotic and said I should start feeling better within two weeks. Only I didn't. I felt worse and worse. It got so bad I was only eating a few pretzels or oyster crackers and sipping on my orange gatorade.
So my doctor sent me to a GI specialist where they ran a bunch of tests. I waited for the results, trying my best to eat what I could and when I could but it was a real challenge. Weight started dropping off. Then more weight dropped off. Still having no idea what was wrong.
My entire life I was always small, anyone who knew me back in the day knows I would eat and eat and never put any weight on. When I got pregnant with my daughter I was so pumped to gain weight, get some curves... feel like a woman for once. Honestly, I wanted the weight. I gained over 60lbs (i know!) and I loved it. I finally felt good and wanted to stay that way.
Then that one morning I woke up and everything changed. I sit here today now 5 pounds under my pre-pregnancy weight and I am frustrated.
Finally in late summer '09 after weeks turning into months of waiting... a diagnosis. Gastroparesis. Most likely caused by that 'stomach virus' I had gotten back in June 2009 when all the symptoms started. I was stunned by the news, but so many things started to make sense. It turns out I had other issues going on along with the Gastroparesis which was making it complicated to diagnose accurately. I had bouts of pancreatitis which I was told I would have for life but sit here one year later with two clean scans thinking maybe it's actually gone!
I have completely changed my life, rearranged it and redesigned it to find a solution. I read the label of absolutely everything that comes near my body and I have to super strict with anything that goes in. I have times when my weight gets so low that I drink nearly 2000 liquid calories in addition to eating what I can during the day. I have taken it upon myself to go to a dietitian to setup a plan that I can live with. The insurance company refused to cover it as it wasn't considered necessary so that's a lot of money out of pocket just to get someone to tell me what I should eat.
The gastroparesis (GP) means that food can sit for a very long time in my tummy and not digest properly which leads to malnutrition. To prevent that I get to drink lots of 'meals in a can' and take whatever vitamins I can in liquid form. This makes it a lot easier for me to absorb the nutrients, it may not be ideal but it works. Fatty diets and fruits and vegetables with roughage are next to impossible for someone with gastroparesis to digest. It's low fat, low fiber all the way. That's if you are lucky enough to eat.
Many people with GP have such a severe cases that they cannot eat at all and get tubes put in their abdomen to bi-pass the stomach entirely. Stomachs have a pace maker just like the heart and in GP the pace maker doesn't function properly. So some people with GP actually have a pace maker put in to make the stomach start to digest again.
It has been such a hard road but it makes me want to get the word out about it. I just woke up one day and I was sick. Ten years ago hardly anyone had heard of this chronic illness with no known cure. Now, nearly 5 million Americans
(source National Institute of Health) alone have been diagnosed with it. The only medicines they have to treat it cause severe side effects to the point a lot of doctors like mine will not even medicate you. My only option was to change my life and accommodate the situation.
If you've read this post, I appreciate you taking the time to hear about my journey with this. Awareness is so important for something like this. The more education and the more that we learn about it, then more medical research will be done and one day maybe there will be a cure.
In addition to awareness I wanted to write this post because I have had so many people reach out to me about my weight loss or my struggles. I so appreciate all of you and want to assure you that I am always on top of it. My lovely daughter, my husband and family and all of you keep me on top of it because of all of you I refuse to let this get me. I have a mild form of it compared to most that I know, I get blood work done all the time to keep my nutrition levels good, keep up with specialists and do whatever is necessary to handle this situation. I'm feeling proud of myself that I gained nearly 5 pounds back in the last 10 days that I've been drinking 'meals in a can' again and I thank you for your support!
