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 the disease and pain I felt terrible, and when I didnt think about it, my pain felt better for the most part, although it still has a mind of its own sometimes!

But this past fall I took that theory one step further, by accident of course. I ventured into a get fit program with Carlye that consisted of boot camp type exercises including push ups, pull ups, weight lifting, etc. All of the typs of things that because of my progressively worsening bone disease in my left arm, I had to stop doing all together. To be a supportive partner I signed on anyway and figured I would do what I could and see how the pain was as I went.

I took it easy at first as the pain crept up and some days were worse than others. I forged on, distracted by the fact that I was hungry i guess, and several months in to the training I had an amazing realization…I was in the best shape of my life and I couldnt remember the last day I had severe pain! I didnt know if it was a coincidence, a physical reaction with my nerves, muscles, and bones, or a mental reaction to behaving like a perfectly able bodied person.

Whatever the reason, I was feeling great, so I continued on with my training, until I went on vacation to Hawaii in February where I was about to do an unplanned experiment and rule out the coincidence theory for the absent pain! As most people do on vacation, I stopped training and enjoyed myself…all except for that nagging pain in my arm that I hadnt felt in months!

My pain got very bad for a week or so after I returned and was almost unbearable at points. Feeling terrible, and not wanting to do anything, much less go workout, I made myself do it. My pain persisted for a day or two but your not gonna believe it…I havent had a bad day since! Its been about two weeks and I am feeling great again!

I still dont know if its a result of something physical or mental, but its something and I hope it continues to work! I dont know what my future holds but I am excited to have something that is helping my pain right now. I will continue to stay positive and know that there are bad days to come but hopefully a lot more good ones!

This is the kind of hope that I want for all of my melo friends, especially the kids, and its the reason I am so passionate about fundraising for my disease. We have a long road ahead of us to find treatment and a cure and it starts with funding the research of a cause of melo. I have done some fundraising in the past and it is very humbling and difficult.

But with the help of friends and family, there is so much going on right now as we prepare for our first annual golf tournament! I am so grateful that I have such supportive friends and family to plan this thing because its a lot of work. I am so excited to have a regular fundraiser to bring money into the melorheostosis association because quite frankly, we (i say we because the association is just melo patients and family members) have very little, and without funding, the future is bleak.

As patients of a very rare disease, we have no cause, no cure, and no treatment. We dont even have doctors we can go to or medicine we can take for our severe pain. So we do what we can, which is reach out to new patients, teach the doctors that donate their time to us, and fundraise.

I hope everyone that gets involved with our efforts realizes what an impact you are making. Decades from now when there is a cause, cure, and treatment for melo, they will look back to right now and the efforts of all of us. No words can properly express how that makes me feel, so Im off to workout…

6 Comments for this entry

• 

  Mykel

  March 19th, 2010 on 6:39 am

  You truly are an inspiration to us all. I have a feeling that motivation speaking is in your future. Have a great workout, love you!!
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  Susan

  April 7th, 2010 on 1:03 pm

  You are an amazing person, and I am proud to know you and to help get the word out! I am forwarding this site, which looks great by the way, to everyone I know!!
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  Kathleen

  April 8th, 2010 on 8:42 am

  You are an inspiration and a joy to all who know you. Your perseverance and determination bring hope to every melorheostosis patient and to every parent of a child afflicted with this debilitating disease. Thank you for who you are and all you do to help find the answers that are so desperately needed.
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  Robin

  April 21st, 2010 on 4:30 am

  In reading your blog I only wish I knew you! You are so full of life and energy. I have melo in my right leg and there are days (like yesterday) it was all I had to walk around. And like you there are good days/bad days. It’s so frustating to have something so many know so little about. I don’t take pain meds, don’t want to be doped up all the time, I just deal. I am going to try the exercise though. I basically gave up doing everything because of the pain but maybe if I can muttle through it it may end up helping. So thanks for the encouragement
  Good luck with your Golf Tournament!
• 

  Dee

  September 1st, 2010 on 8:52 am

  I am feel so blessed to be able to know you and help out with this. I love fundraising! The golf tournament was amazing! I walked away feeling that this was the best group of people ever. I was so happy to help and looking forward to our next venture. Keep strong. dee dee
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  Sandra

  January 22nd, 2012 on 8:11 pm

  Reading your blog for my daughter, she’s 14 and was diagnosed 2010 in her right ankle. The pain was severe and caused her to stop cheer, volleyball and athletics. It’s so hard to deal with all the depression and heartache she faces. I would love for her to meet you one day at a conference if we can go. Thank you for all you are doing for this terrible condition.