About Me

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I am a wife and mother who also has cystic fibrosis and a mitochondrial disease.

Sunday, March 17, 2013

French Fries fix everything...until you eat too many

So a lot has been happening in the world. Family has been sick and friends are hurting, it has been a tough year so far. Through it all, a problem has been niggling in the back of my mind. I am getting worse. I have been trying to rate my pain and fatigue every day. The fatigue has stayed the same. But the pain hasn't, the past few weeks I have not been lower than a 5. I have been taking lyrica every day, and a vicodin at least once a day (usually to help me sleep).

I love my primary care doctor, I think she is wonderful.She absolutely thinks outside of the box, which is what a zebra like me needs. Some of you know the reference but for those who don't; zebra is a slang for a surprising diagnosis. Although rare diseases are, in general, surprising when they are encountered, other diseases can be surprising in a particular person and time, and so "zebra" is the broader concept. It came from the saying, "When you hear hoof beats behind you, don't expect to see a zebra". http://en.wikipedia.org/wiki/Zebra_(medical)

So as I said, I need someone to think outside of the box. But I also need a specialist. So I contacted one of the doctors that discovered my mutation and wrote an article on me (http://www.ncbi.nlm.nih.gov/pubmed/12400067). I'm excited that she says she is going to see me! I can't wait! Don't get me wrong, there is no cure and I know that. Not yet anyway. But there could be a better way to treat this pain and discomfort.

In other news, our new dog is doing well. My daughter has a job in a kitchen, and loves it. My husband is doing well too, except he fell down our steps the other day. He only fell down the last 4 but he landed flat on his back. He has been sore for the past few days but he seems to be doing better. I also got to hang out with my BFF, Jessica. I have been resting and not really doing anything, but when I had the chance I hung out with her! She lives far away, I could drive to her house more often....if I could drive more often. Anyhow we went out and got french fries which are a cure all. That is until you eat to many, then they are the problem! Jessica and I lost touch for years, and a few "best friends" filled in. But they paled in comparison to Jess. I'm not saying she doesn't have flaws, but her flaws compliment my own.

All in all, I really do have a blessed life. What is illness when you have the kind of family and friends I have?