Taking a Negative and Making a Positive
by Sarah of OI Resource

There is a lesson in life that I have been trying to learn for a long time. It shows itself very clearly to me in my experiences with Chronic Fatigue Syndrome (CFS)/Orthostatic Intolerance (OI). It is that no matter how bad the circumstances look now and how many doubts I have about the future, God is always working behind the scenes to bring the next answer into my life. It will come suddenly and without warning and often in unexpected packaging. I never know where the next answer is going to come from, but I do know that no matter where I am, He can get the answer to me. There are so many days that it sure would help if I would remember that and look forward to and hope for future improvements in all areas of my life without getting caught up in how badly things seem to be going!

My life has been affected by CFS/OI since I was nine when my mom got sick in 1988. Then I also became sick with CFS/OI when I was fifteen in 1994. We had the similar experience of having a healthy, successful life with lots of plans for the future, but we both woke up with the “flu” one day (over 6 years apart) from which we did not recover.

In 2000, after about five years of having been diagnosed with CFS and being mostly bedbound, some information came across my bed that would change the direction of my life. I was reading Dr. David S. Bell’s CFS newsletter (The Lyndonville News) and he started explaining OI and its relationship to CFS. He had been working for several years with a specialist, Dr. David H. Streeten, who had been investigating OI for a long time. This information was revolutionary to me. Over the years I had looked at other illnesses, but I did not fit their patterns. OI was the one problem that could tie everything I'd experienced together and could explain most, if not all, of my remaining symptoms. It explained why lying down had become my best treatment option. It explained why being up was so hard and other variations of awful. It was also exciting because there is such a simple test for it. I failed! Finally, things started making sense and I could see how previous experiences fit together into a whole picture.

Early the next year, I read Dr. Bell’s book, Faces of CFS, as I searched for treatments. I had been learning about OI, but I was still surprised by one of Dr. Bell’s and Dr. Streeten’s experiments. First, I was surprised by how easily just standing replicated CFS symptoms, and then I was surprised by how simply putting pressure on the legs and abdomen relieved symptoms during standing. There was a problem of mobility with the pressure pants being used (in their experiment, MAST trousers). That was when God gave me the idea of a g-suit.

I did not know exactly what a g-suit was, but I found out that g-suits are pants that fighter pilots wear to push blood back up to their heart and brain. (NASA also uses g-suits for the problem of OI with their astronauts. They are also pursuing other treatments to keep blood from pooling in astronauts' legs.) Pressure pants were originally invented in 1903 for use during surgery by Dr. George Crile. A g-suit sounded like it might help me, but how was I going to convert a g-suit from military use to medical use?

In August 2001, I started wearing a g-suit daily and have had much success with it. I have put together a website (www.OIResource.com), which includes all of the research I collected from many sources about OI and g-suits. It also contains information about an exciting possible treatment for those with orthostatic intolerance called an Impedance Threshold Device (ITD. It is a small, simple breathing device that was invented for CPR in the 1990’s. I use an ITD and it has helped me improve. With the help of a g-suit and ITD, I have been able to pursue more in-depth testing and treatments, and I've participated in several research studies.

I hope in the future to always remember that no matter how long it has been since I have made progress, God is always working in my life. In particular, He has many doctors and researchers in place who are dedicated to understanding and treating OI successfully. Through my website, I would like to help people find out if OI is causing problems for them and encourage them to find the best possible treatment. I know from experience that OI treatment should add tangible quantity and quality to everyday life. With current treatments and future developments, I know that my time is coming and I will get to show my full potential again and live my life full of learning, creativity, and energy!

Sarah
contact@oiresource.com
www.OIResource.com

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