So much going on!

I have neglected the blog for a while. There is a lot going on and I am not able to catch my breath most of the time any more. Most of it is very exciting. But of course, there are things that are getting in the way of my life, Mito really. I guess it just goes to show you how much chronic disease really does affect your life. I am looking for more quality of life lately and I am hoping that I will have the opportunity to pursue such very soon.

I have seen Dr. E, the surgeon. He did an Endoscopy, but it didn't show anything terribly abnormal. While that may be a good thing, it also sheds no light on what could be causing all of this. Dr. E also thought it was possible that I might also be having issues with my gal bladder. They did a HIDA scan, which basically judges how well my gal bladder is working, or isn't working. That all came back fine, which again sheds no light on what is going on with my GI system. I have already talked to Dr. E about this and explained to him that I am having some very real issues with digestion and don't feel like I digest food well in any way. I have long suspected some form of gastroparesis, which essentially means either my stomach muscle is completely paralyzed (which is not the case) or simply does not work in the way it's supposed to.

I had the opportunity to serve as a counselor and camp nurse at Northern Pines Christian Youth camp in June. It was a wonderful and spiritually enriching opportunity to help the campers grow in their faith and become closer to God. There were so many wonderful moments and I am looking forward to next year already. I went to Northern Pines as a high schooler for two years and ever since then the camp has always held a special place in my heart. It was beyond amazing to see people I haven't seen since I was a camper, and it's always wonderful to meet new people. I was a little nervous because our last camp nurse was absolutely amazing and phenomenal and I knew I had some big shoes to fill, but it seems as though I did pretty well. At least, they didn't tell me I can't come back next year.

Unfortunately, it looks as though my insurance will be restricted for an undetermined period of time. I am still going to try and fight it, but I'm really not sure how that will go. Basically since this has happened, my appointment with Urology is out, my gastric emptying study is out, and so is going to the U of M for research and hopefully a more clear diagnosis With this, I'm really struggling. I don't know how much more diagnosis and testing I am planning on pursuing. There is no cure for Mitochondrial disease and no really effective treatments. I don't really know what to do any more. I really want a life outside of hospital visits/stays, doctor appointments, medications and testing. I know that this is par for the course somewhat with Mito (or any chronic disease for that matter). But I'm starting to wonder when enough is enough.

Another thing that has happened, that I've been hesitant to say anything about, is my new partner in crime, Justin. He and I met about 5-6 months ago and instantly hit it off, becoming best friends. However, it was clear to both of us that there was something more there. I was hesitant to even try to date because I've been through so much and because of my health. But, he won me over and I'm dating my best friend. I am so very much in love with this man. He has blessed me beyond my wildest dreams, and treats me wonderfully. I thank God every day I have him by my side. There are definitely some good points to life also.

Please continue to keep these issues in your thoughts and prayers. More things to come later.