Archive for the ‘Melorheostosis’ Category
Its about time!
Its about time I posted a new blog because it has been way too long! I avoided posting for a long time because anytime I focus on my disease, the pain gets worse! I love going to the conferences each year but my pain is always so much worse around that time so i tend to disappear for a while after its over! There is no help for the pain we deal with and there are no doctors to visit that can give us any help or even understand what our disease is. But recently I have come to realize how powerful the brain can be and that I may actually be able to have some control over my pain! This is a very exciting revelation for me because in addition to the chronic pain melo patients deal with, we also have to battle the daunting fact that there is nothing we can do about it as it progressively worsens. When I allow myself to get caught up in these thoughts, (which doesnt happen very often but occassionally I cant help it!) I get overwhelmed with depression, emotional fatigue...and pain. So over the past few years I began noticing that when I thought about ...
Most people sit across from their doctors to look for answers, we sit next to ours.
Its Sunday morning November 9th at 8:37am. I have posted some pictures from my wonderful trip to Washington DC a couple of weeks ago for our annual Melo conference. On the left is the White House, in the middle is me standing in front of the Washington National Monument, and on the right are some of my Melo friends. Jen Gordy from Colorado is on the right, her husband is on the left, and Sajjad from Bangladesh is in the middle. Sajjad is one of many people who came a long way in hopes of finding some answers about his rare disease. What he found out is what I already knew, there are no answers. What he did find were doctors that knew how to pronounce the disease and who would love to someday have some answers for us. What he also found for the first time were fellow patients like me. There is something so powerful about finally looking another patient in the eye because without even speaking, you understand each others daily struggle. I go back ...
Pain
It is Thursday night, October 2nd at 7:20pm and I am compelled to write my first blog on my web site (long overdue I know), because today I find myself in an extraordinary amount of pain. I dont know if it is more frustrating that there is no obvious reason for the pain or that there is nothing I can do about it. Those who know me well, know that I very rarely express to anyone that I am hurting. But today, figuring in some way it might help, I told lots of people. I suppose it did help, and everyone that cares about me is so wonderful and sympathetic, but there is no way I can make them understand how it feels. I guess in some way I feel like if I can describe my pain so that they can relate it to something they have felt before, that they would really understand and that might justify me feeling so badly. Everyone feels pain in their life at all different levels. I guess what is so difficult about pain associated with a rare bone disease like mine, with no established cause, cure, or treatment, is that there is a feeling of ...
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