Wednesday, July 22, 2015

2015 so far...

Gotta Keep Chugging:

2015 as year has been amazing, but also difficult at the same time. I love the achievements, happy memories, and celebrations that have or are happening. For example: I turned 30 years old in April. If you don't remember, check out the photo album from it on my CF Facebook page. We turned my birthday party into a Bowling CFF fundraisier, raising $400 for our Great Strides Walk! In June, I also hosted & organized Princeton's 2nd CF Walk (first official Great Strides Walk) and we raised over $22,000 for the CF Foundation. And of course, ANDREW & I ARE GETTING MARRIED in August!!!

As promised here are a few more photos from our wedding shower-


It was a beautiful shower, THANK YOU!

It has been an amazing year!!!!


But, it has its rough patches too. I've had lots of GastroIntestinal Issues, was on IV meds that I didn't respond too, was on steroids and over 11 nebulizers a day for a long time... And I only saw a slight increase in my health.. In fact, on top of that my arthritis has been flaring up, my liver enzyme levels have above normal levels for over 6 months straight... However, I've been off prednisone and the extra antibiotics for a few months... I'm hoping next week they will check my levels and they will be down.

I was super excited to start this year without a G-tube! After having it put in at 13 years old, I've been VERY grateful for it. But since 2013 I hadn't been using it, I didn't seem to need it anymore. On top of that I had other reasons I wanted it finally taken out. The area/ hole around it keep gettting raw, sore, and was bleeding. The surgeon said the hole was slowly getting bigger and my stomach acid would leak out.. It ruined a lot of clothes, but most of all was painful. Stomach acid getting into raw areas of skin. Owie. It would leak anything I drank, even food sometimes. So I was getting scared to drink or eat in public. So Doc understood it was time for it to go, espeically since I wasn't needing to use it. I took 9 months of not using it, but keeping it as a back up, to prove I didn't need it. Then on that Beautiful day, the surgeon took it out!

I had complications, it didn't heal up, I had developed a fistula. and long story short (read about my surgery & gtube HERE) I had a surgery in October to fix that. I got sick in November, then again in Jan -March off and on.. I lost a lot of weight when I was sick and worst of all I was having bad GI problems.

My GI doc put me on a very restrictive diet that did the trick, but then I dropped to 97 lbs and started basically feeling like I had no energy... So my CF doc said I had to slowly add things back. Well the problems came back slightly (but not nearly as bad). At this point I'm just trying to get my weight and lung function back up to where I want it.

I'm not sure if the GI problems, liver problems, and lower lung function are connected, but I'm sure they all affect each other. So as of now.... I'm not eating dairy, greasy, high fat, or buttery foods to help with GI. I'm trying not to take any Tylenol or extra over-the-counter meds and absolutely no alcohol (not a big deal to me, I don't really drink) to see if it helps my liver... I'm trying to eat over 3,000 calories a day (have a phone app for counting calories, I think people use it for weight loss, but eh it works...) to gain weight. I think it is a solid plan!!

AND I'm exercising more to bring up my lung function. You may remember me blogging about my lil rehab in this post HERE. I've been trying to keep up with it since April!!! Well here is an update...It's been a month, I still swim when Andrew has the day off and the pool is open, I do arm weights once a week at least , and I have been walking every day for almost a week.

Today I walked .67 of a mile in 9 mins. I'm not very fast, but I'm working up. The first walk I did was around the block and back... So eventually I hope to get back to where I was in 2012. Doing a 5K in 47 minutes. I took me 4 months to get to that point in 2012, so I'm hoping in can do it in 3 months this time!

I have to believe I was so healthy just 2.5 years ago.I refuse to let the negative thoughts cloud my mind. I'm 30 years old. I'm going to remain positive. I do not think I have the start of CF related liver disease (which happens when your liver ducts are blocked up with mucus). Yes, Lungs, liver, pancreas all over taken by mucus. yuck. . I will continue to believe its just from the meds I was on and my lower health currently.

It's going to take a while and it's going to be frustrating I'm sure. I can't expect to see results fast. Just gotta stay focused. next thursday is my next CF appointment!

Make sure to check out my facebook page: Cheriz: My Life with Cystic Fibrosis - I posted some CF Foundation news & an informative poster comparing CF lungs to other's lungs.




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