Friday, October 10, 2014

Honesty from the Operation Board Game

ehhhhh My Nose Buzzed: 

As you know I'm having surgery on Tuesday. If you aren't sure why then find out here! I've talked a lot about why I had the G-tube put in during 7th grade, how it has helped me, and discussed how annoying it is that it leaks. Well, that's not really the whole picture. There's much more to this. If you count the bronchoscopies, and minor surgeries, then I've had around 15 surgical procedures. This is my 8th (for lack of a better term) major or "real" surgery.

I feel like the operation board game for crying out loud! 

To be honest:
I understand my life will be full of operations and medical procedures. But, It's FRUSTRATING to need a surgery to fix this hole. Getting the tube taken out in June was supposed a joyous and amazing experience. I kept my weight at 106-108 for months without using my tube!!!!! I can finally say I don't need my G-tube! I was so proud and while none of that changes, it's still annoying it became complicated after it was taken out. I was supposed to be done with, but I'm not. It is beyond weird to have to change my gauze on a hole that goes through my skin into my stomach and leaks my food contents. If you are grossed out, I'm sorry, but this is what I deal with and now you are getting the full picture.

Crazy, I've been leaking out of my stomach like a bullet wound or something for months. I miss laying on my stomach or side, I dislike always having to lay on my back. I can't wait to wear whatever shirt or swimsuit I want. And It hurts, whenever it leaks it stings like crazy. The stomach acid gets in to all the open sores and cuts and really stings. And I've only been telling everyone about how glad I am it is out. But worst of all it has interefered with my social life, my work, and even classes. I've been unable to work (since I took medical leave in June) because the amount it leaks after eating and drinking. I have to take the gauze off after I eat and use paper towels, once its less leaky I put on a new gauze. Even then I'm still changing them too much to be in a work environment. Having a hole through me, leaking from it, it's unreal.  My Boyfriend knows to keep extra gauze and medical tape in our cars. I'm nervous when out in public or have to attend anything where I won't be able to change the gauze when needed. Packing tons of medical supplies wherever we go, keeping meds refrigerated on trips, not forgetting inhalers, lugging oxygen tanks (if needed) or big therapy machines, that's the life of a CFer.

After this surgery I know I will need some time to completely heal. While I can deal with pain and walk through it, I still have problems with going to the bathroom and getting my intestines working properly after every single surgery. At birth they removed a large portion of my intestines due to gangrene and a blockage. Then in 2003, they had to removed another section. Doctors' best estimate is that they have removed 15% of my intestines, plus the scar tissues, and the 5 hernias. My whole abdomin area is covered in hernia mesh. My intestines tend to knot up as well. So needless to say my gut hates me and I know more procedures will be in my future. Actually, a lot of my body hates me, but that's okay, I listen to it and do what it needs Its the only way I can gauge what it wrong and what needs fixed. If you want to read more about my history with CF, Cerebral Palsy, Seizures, Arthritis, Intestinal Problems, Lung infections and more check out my brief history page here.

Feeling like an operation board game,  it was such a fun childhood game, but now its so much more real. I've had so many procedures. And that's regardless of the fact that my surgeon (and my past surgeon) don't  like doing surgery on me, unless absolutely necessary because of my 50% lung function. Which of course makes me a little on edge. I guess I should be a pro at this. In a way I am, I know what to expect. I know I won't end up taking any pain killers due to my gut issues (and my severe pain killer allergies), so it will be painful walking and healing for a few days. I know I'll have secondary issues for a week or two after. I know what's coming. I know a lot, but not everything. So I'm always still a little nervous, but don't admitt it to most people.

I'm more nervous about than usual, its dealing with my stomach organ, not the intestines or hernias like usual. Also, since a few of my friends (including Laura) passed away in the last 2 weeks my mortality has been more in my face. Therefore, I'm a lil spooked about the situation, which is silly. But that is just last minute jitters. But still these are all things I think about and you should know. And I want to be honest in this blog.

People have said "I'm inspiring". I hope its inspiring that I keep loving life and will never stop loving my life regardless of the medical situation. But,  I hope you don't think I'm fearless or always have the courage I should. I try to, but I don't. I don't always, I've cried, screamed, and acted crazy over certain issues thanks to CF over the years. Luckily, I always have someone there for me. In my past it was my mom. She'd just hug me and tell me she loved me and it was okay. And now I have Andrew. He understands, listens, and always knows exactly what to do.

I know that as soon as this surgery is over I have nothing to worry about. Everything just gets better from here. I'll heal up and get to reap the rewards of not having my G-tube or the hole anymore!

As soon as I can, I'm gonna sleep and lay on my stomach. I'm gonna hug people like never before and love wearing swimming suits. I'll be healed hopfully by Oct 27th, that's Andrew and I's 2 year (dating) anniversary.

Until Tuesday... I'm gonna do everything I can to get myself the healthiest I can be & make sure everything goes smoothly. So here's to trying to get my healthiest : Doing nebs. eating as much as I can, and going on walks to give my lungs a workout.  Stay tuned to here how my surgery goes on Tues!  I can't wait to be better and attack the world again (in a good way)!






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