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

Tuesday, July 5, 2016

Camping in Cook Forest 2016

It's been a while since my last update, I've just been so darn tired.

So in my last blog I discussed my NTM bacteria's, and my experience with Amikacin. They gave my Cipro after that, but oddly enough I had a reaction this time. I've had it before but I think the other antibiotics in my combo made it something I could not tolerate. Two weeks ago my blood work indicated that I needed a blood transfusion. My primary care doctor was out of town, and I decided to just go on my already planned vacation. I did call one of the doctors at NIH, and they suggested that I might have a tedizolid toxicity and that I stop taking it for a week and then get retested. So I went with my family; Frank, Kate, Kearie, Mary, Scott and Seth. We had a blast, it was relaxing and fun and exactly what I needed to get out of the funk I had fallen into. I'm sick of feeling sick. I haven't felt like my self in about 10 months. I had gotten depressed over it, and our vacation reminded me of some things I had forgotten. Thanks to my family, this trip was relaxing, refreshing and most of all fun.

Our car broke down on the way home and we need to buy another one. My mood is better, but I'm still not feeling so great. I put in a call to my primary doctor today, who should have me results from the last blood work by now, and hopefully a suggestion on how to help. At this point my last option is a blood transfusion, as far s I know. She may have another option, fingers crossed. I get IV therapy once a week/every other week so I know the place where I would be getting the transfusion. Additionally I have family who have had this done, but I'm always a little nervous about getting a new medicine or treatment.

In other news, my daughter is home visiting for her summer vacation! That has helped my mood too and I'm excited as we are closer to her graduating and moving home. She'll be moving back in and getting a job in the area (hopefully) and attending college in order to get the business class she needs.


  1. Love you, Chrissy! It is disheartening to see how much you struggle with things that most people (me included) take for granted. And I'm not sure how this comes across, but it felt good to try to pamper you where we could. And it's okay to be pampered! So, just remember, if you really really don't WANT to go out and search for pizza with Frank, you don't HAVE to. LOL.

  2. It is wonderful how a period in the fresh air can help to lift one's mood. Spending time with good friends and loving family members is a real restorative. You clearly have a great deal to cope with as a result of your illness. I do hope you enjoy your daughter's visit and that she decides to stay close by.

    Andrea Wilkins @ Getaway Outdoors