Rare Disease Day 2012

The last day of February each year is designated as World Rare Disease Day. In the U.S., a rare disease is one that affects fewer than 200,000 people. There are nearly 7,000 rare diseases affecting nearly 30 million Americans, with 75% of those diseases affecting children. In other words, as many as ONE in TEN Americans are suffering from a rare disease. There is NO cure for ANY rare disease and there are only approved treatments for 5% of the rare diseases. Shocking, isn't it? Yet, we are still being ignored. When Gage was diagnosed with Wolman's Disease, there was no cure or proven treatment. We did the bone marrow transplant with the desperate hope that it would somehow work. And it did. But it also lead to his death. We HAVE to do better than this! There HAS to be a better way!

The weight of it all

Here is a secret about me: Until a few months ago, I had not lost one pound of baby weight from all 3 of my babies. I had gained weight, kept it on, had another baby, gained weight...for all 3. Gage was 5 weeks old when he got sick, so I hadn't even been allowed to exercise yet after my c-section. Then I sat in a hospital for months and ate and ate and ate. After Gage died, my husband and I turned to food. We went out to eat...a lot. We got food delivered... a lot. I think this happened for a couple of reasons. Number one: we did not want to sit down at our kitchen table and stare at the empty high chair. As long as we kept going out, we didn't have to do that. Another reason was that we did not want to deprive ourselves of something we wanted. I know I felt like I deserved to be able to eat all the donuts and fast food I wanted if it made me happy. We kept up this trend for a while. In January 2011, my husband and I joined a gym. He was very excited while I had low expectations for myself. I started Z.umba and LOVED it...until I experienced two herniated discs in my back and had to stop for a while. Charlie kept with his rigorous routine while I fell back into old habits. Fast forward to July 2011. The two year anniversary of Gage's death. I suddenly realized that I really wanted to be healthier and look better. Charlie and I decided to really buckle down and eat better. He bumped up his work out routine from 3 days a week to 4.(He is a completely changed man, by the way) I started going twice a week. But the biggest difference for me was the food. No more processed foods, no more restaurant or fast food (except on cheat days) and no more sugary drinks. I started a free program and where I can record all my food and it keeps up with my calories and my progress. I am now eating 1400 calories a day. I don't follow any particular diet I have to stick to, just common sense. I have lost 41 pounds! And I really want to lose 20 more. It feels really great to let go of some of my "grief weight" as I like to call it. Sometimes I feel like I can't see the difference in my before and after, but Charlie took a picture of me last night and then showed me a pic of myself from May 2011. I am starting to see a difference now. So I am going to share these pictures. Yikes!