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As of now, I have chronic adhesion colic, fibromyalgia, Ehlers Danlos and NCS which is a form of dysautonomia. Click on the banner below to go to the Dysautonomia Youth Network of America’s website to learn more about Dysautonomia. Life isn't always easy, but hey, don't sweat the small stuff! I believe in taking things 1 day at a time. There will be bad days and there will be good days when you’re dealing with a chronic illness. You just have to make the best of it and live life to the fullest. I don’t believe in letting a chronic illness get you down. Granted there are days when you feel terrible, but there will always be a light at the end of the tunnel. Sometimes its hard to stay positive. But I try and remember to be happy for the many things that I can do and I try and learn to accept the hard days with patience.
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My Story
As a kid, I always had joint problems. I would dislocate practically any joint without problem and without cause too. I’d be walking and the joint would just give way. However, a visit to the Chinese doctor usually fixed it. They would just “crack” my joint back into place, wrap a bandage around it and I’d be good to go. We never thought much about it or to see a doctor about it. In fact, we thought that I was weird for having this problem!
Then in late 2001, it started with a tummyache. I was busy studying for my “A” level exams and I started having this pain in my tummy on the right side. We went to see my doctor and he sent us off to the hospital saying that he suspected it was appendicitis. Within a couple of hours, I was admitted to the hospital and sent off for my 1st surgery. They removed the appendix, and it was a totally uneventful recovery. Within 3 days, I was discharged and went home.
We thought it was over. But the tummyaches started up again. It was back to the hospital for more tests and checks. They deduced that I had a complication from the surgery. Fibrous scar tissue had started growing inside me and that was sticking onto my intestines causing it to twist. I was in the hospital several times again and finally in June 2002, they decided to do surgery again. The aim was to free the adhesions that were causing me pain. It was a big surgery and I carry the scar that runs across half my tummy. I was in the hospital for a week and it took about a month for me to recover fully from it. Again, we thought it was the end. But within the month, I was back in the hospital for tummy pains. And so it has been since then. There was a point where I was in an average of once a month, but it has started to spread out since then. When you go in, they usually keep you nil by mouth until the tummy issue resolves itself. Thankfully in my case, it usually does, eliminating the need for more surgeries. In Febuary 2006, I had surgery to put in a trial spinal cord simulator to see if that would help with the bad tummy pains I was getting. However, the final decision was to put off having the spinal cord simulator permanantly implanted for now. Too many compications that could arise from it.
In 2003, more problems started. I did have some episodes of passing out as a kid. However, it was nothing too bothersome. However, these episodes started to increase with frightening frequency. I went to see a cardiologist who ran the usual battery of tests and nothing came back positive with the exception of the tilt table test. However, he could give me no answers and medications were not helping. He told me he didn’t know how to help me anymore. Stuck and frustrated, I found DYNA. I was able to see Dr Abdallah in Virginia. He studied the results of my tests and told me that I had Dysautonomia. It is a malfunction of the autonomic nervous system. This explained the passing out, the rapid heartbeats and the overall lousy feeling and fatigue I’d been feeling. He prescribed Florinef and Midodrine that I’m still on and it seems to be helping a little with the symptoms. The dysautonomia seems to be affecting my tummy. I have periods where I'm really nauseous and can't eat a thing. This lands me up in the hospital for long periods and we almost started TPN. But as of now, I'm hanging on and trying to avoid that.
He also told me that my joint problems were due to Ehlers-Danlos. I had all the symptoms of it. The joints and the elastic like skin. Apparently, a lot of people with Dysautonomia have Ehlers-Danlos too. There seems to be some sort of connection between the two. For this, I have recently started PT in the hopes that it will strengthen my muscles holding the joints together so that I dislocate less.
So that’s my story in brief. It has been a long and rough journey and right now, there’s still no end in sight. With most of the stuff I have, there has yet to be a cure. I deal with dizziness, passing out, joint and muscle pain, dislocations, swelling, nausea, brain fog, fatigue and many other symptoms daily. I have the weirdest dietary requirements, high salt and low fiber. And it is very hard to live life like a normal person.
However, this journey has taught me so much; Patience, hope, courage and the meaning of living life to the fullest. Today I might be able to do something, but it doesn’t mean that I’ll be able to do it tomorrow. And that is very frustrating. However, I’ve met so many people, both in person as well as online, and I have learnt much from them. Living each day as if its my last. Hoping tomorrow will be better, accepting if its not. But never failing to dream. My favourite quote would be:
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