Sunday, June 14, 2015


Getting Some Answers:

My wedding planning is over and the wedding is coming up soon. We get married in 2 months! Also, the CF Walk I'm in charge of is on June 27th, so two weeks and that is done (if you want to donate to it, here is my page: ). The Clinical Trial I'm on has two more weeks as well and its done! Life has been so busy lately, that even though I love everything that has been going on... I can't wait until life is a little simpler. But I guess life isn't really ever simple.

The clinical trial is going pretty well. I miss being on hypertonic saline, but it's only a four week trial. The actual breathing treatment/ trial med doesn't take that long to do. So that is nice. However, the trial med has a
more rigorous cleaning/sterilization process after each use. That takes time to do and makes traveling a bit harder.

That didn't stop me from going to visit my sister for a few days. She moved to a new place on Saturday, so I helped her pack & move. It was pretty tiring, especially on moving day. But, I loved spending time with her and I'm glad I got to see her new place, it is really nice.

I'm getting a little better at finding food I can eat, not hating it any less though. haha of course. But I am catching on quicker at restaurants to what I can order. I'm hoping though Doc will have some better solutions. He said we are going to discuss it Wednesday at my clinic appointment. That's right, I have a clinical trial meeting & my clinic appointment too in 3 days. Hope my lungs and weight are slightly up or at least the same. It's annoying when they keep going down.

With my inability to eat high calorie foods and gain weight, I'm wondering if I made a mistake getting my G-tube taken out last fall. It was leaking, raw, sore, and kept getting worse. But, now I wonder if I should have just dealt with it, since my weight loss is a bigger problem then a leaking tube. Weight being down is correlated to overall health and directly affects it. If my weight goes down, typically that means I don't get nutrients I need. While I take vitamin supplements (8,000 units A daily, 50,000 units of D on Sundays, and Vitamin E daily), I know my iron and calcium have to be low from not eating meat & dairy. So I have a lot to discuss with Doc Wednesday. I may even suggest I put a tube down my nose for a while. I really want to get my weight back to 108 before our wedding and that is impossible without extra calories during the night.

I guess it could be worse. I've been trying hard the last few weeks to maintain my weight & my family has been super helpful. So I've been hoovering around 100 even (slightly before up to 100.4). But, I've been a lot worse before. I was 80 lbs and 38% lung function in college. So I gotta just keep at it. I don't want to end up there again. Focusing on that will help.

One thing that is helping (I hope) or will anyway (down the road) is the fact that I'm tying to "work out" more. Now, I don't mean the usual jogging or weight lifting, but I go swimming sometimes, or out for a walk. Nothing big, but again I do what my body will allow me too. If you read my last couple posts below you will know more about my lil rehab plan I have put together.

Not sure how fast it will help, but my goal is to be 108 & healthy by my wedding. I want to dance without needing drinks or an inhaler in between every song. Especially since we are picking out some of our favorite songs for the reception.

I guess a lot of my questions will be answered on Wednesday. I'll keep everyone updated. Thanks!

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