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.

Duck!

I had NIH this past Wednesday, and tomorrow the fam and I are headed on vacation. I am so excited! NIH went well, I got lectured about doing my treatments and I have a sinus infection (again). But my Lung Function is 82%!

The lecture came about because after speaking with my doctor she had said that if I missed a treatment or two not to worry, because my lungs were sounding clear. Well, I twisted that to mean that I did not have to use them if I was feeling ok. Stupid, I know. I’m trying to get back on track with them. She had me double up on my antibiotics for the next 2 weeks, because of the sinus infection. I had a fever when I went in and I have been having some nasty plugs from my sinuses.
As far as my mitochondrial disease is concerned my CF doc is still trying to get someone to take notice and treat me. Hell, I’d be glad if they’d just studied me. Just so someone else could watch what’s happening and hopefully figure out why and how it’s happening. I understand there is no cure and that it is progressive…but there has to be some kind of treatment. Even if it’s just to help me sleep. I have such a hard time getting comfortable enough to fall asleep.

On to the best news…

Tomorrow we are going on vacation for a week! We are going to Duck, NC and I am so excited. We are going with our friends Chris and Damon and their kids (Alexander and Devin). The beach house is close to the beach, so I won’t have to walk far to get there. Frank was saying he might even drive me as close as he can so that I can save spoons (energy). I just can’t wait to be able to watch the sun rise, and feel the energy. I know it might sound weird but I feel as if the beach is sacred. It is a place where the energy of the land meets the energy of the ocean and I just feel closer to Nature. And for those who don’t know my beliefs…I feel that God and Nature are synonymous. (I also say I feel, rather than I believe because the truth is, I do feel it.)

I am taking a camera to catch as many memories as I can! There is internet access there and despite my want to be active, I’ll probably get online and maybe even post some pictures of my Facebook page. I’d love to go out every day, but I know I won’t! The house has a deck so I’ll probably spend a lot of time sitting out on it, breathing in the salty air and just being closer to my family and God. Nothing could be better.

Playing catch up...

My last entry was back in February; so I'm going to try to catch you up. I wasn't feeling well for a while. As I started to feel better my friend Chris offered Frank and I her condo in Ocean City for a week. So we decided; since we haven't been on a vacation in a while, that we were going to go! I really love the beach, a lot more than I did when I was younger. It is just a relaxing and peaceful, and our trip was wonderful. My little brother Pete went with us (as well as Kate of course) and everyone really had a great time! We came home to new living room furniture (sofa and love seat) which was nice, and then we all got sick the following week.

That brings us to today, where everyone is definitely feeling better! I'm excited about my birthday coming up (Thursday); I'll be 34. It seems like just yesterday that Kate was born and I got married! So this week I have been on a big gratitude trip. I am so thankful for my life, and I have been so blessed with my family and friends. Frank and Kate are taking me out for my birthday on Saturday, but I have no idea where we are going! I think they are going to blind fold me in the car! I don't get a hint either, when they asked what I wanted I said to spend time with them. So I'm guessing that's what we are doing, going to spend the day together. Other than that I have no idea! It will definitely be a surprise!

I also have to post about my daughter. Kate and I both lead teams at our local Great Strides CF walk, but last year I just couldn't participate. (I wasn't feeling well and my grandmother had just passed away) This year we were talking about it and Kate said she'd like to take over my team this year and lead it for me. So she did. She and I worked on a montage for the walk this year and so far it seems to have gotten a really good response!

Make video montages at www.OneTrueMedia.com