Tuesday, January 28, 2014

Acceptance?! Kinda not really

Accepting the fact that your not able to control your disease is a hard pill to swallow

Realizing your at the mercy of cf and everything it does to you and your not able to make the improvements in your health like you use to. Learning to cope with your new baseline is beyond disappointing in so many ways. I become disappointed in myself, my health team,my decisions..shoot at times my life. 

I always knew this was a progressive disease but I started out so strong and now I see the toll this has taken on my body. Never thought I'd be where iam today

Even though it sounds like I'm sad I'm really not. I understand it's just the way it is... I can only control so much. It makes me enjoy everyday a little more because I never know what tomorrow will bring. 

I'm laying In bed at my parents cause of my iv schedule it's hard to handle it myself and get the rest my body demands. My husband is working nights and quite frankly I don't like to be alone at night. That's when my mind gets the best of me. My demons show up and sometimes they are stronger then me and take over my mind. It's easier to be surrounded by my family and dogs. Even if they fart a lot. (The dogs not my family)

I know every cough my mom hears even from a dead sleep. That's a cf momma right there. A damn good one too. So when I sleep over I sleep great but her on the hand sleeps with her ears listening to every cough and noise. Uneasy sleep. But a complete feeling knowing we're all together. 

Peace love and hello kitty to all
 And to all a goodnight 

Sunday, January 26, 2014

Can I please have your attention...

Attention everyone; I'm trying to get fat. 

Please bring all doughnuts cake and carbs to my home. I currently am taking donations in the calorie department and I'm also seeking any one who would like to donate some weight to me. Just come on down!

I wish it was that easy. 

I have gotten myself in trouble. I spoke my opinion at clinic last week about finally stepping up and starting my tube feedings again. It's been close to 18 months without using then religiously. My weight is solid at 110 but I'm struggling with my lungs. They are hovering around 50% to 60%. That's unacceptable. Not only is it low numbers for me but it's also hard to function. I'm gasping for air constantly and I have little to no energy. So why not get fat and see if that helps. What's the worse that could happen?

 ( blood sugars go crazy or late night tube feeding leaking or the awesome over fed feeling that leads to throwing up. Then you cry cause you just threw up all your calories.)

This decision was hard and it's a true sign that I'm getting older and making decisions based on what's best not easiest. Hopefully I can stay in this frame of mind and get the weight back on. 
Wish me luck and lots of pounds!

*saying "getting fat" or the term "fat" is my sad attempt at humor and by no means do I think by doing my feedings I will get fat*

Sunday, January 19, 2014

2013 compared to 2014

What a difference a year makes. This time last year I was admitted for a lung bleed that landed me a hospital stay for my 26th birthday 

Today on my 27th when my head hits the pillow I will be in MY home. With my husband.

I spent the day surrounded by my family enjoying my new home. Showing everyone all the work everyone has done and the gushing over how hard they worked to make this house our home. 

On my 26th birthday I sat in an empty hospital waiting room with my closest family and ate cold food but it was happy times because we were together. I feel asleep that night hooked to an iv pole and a bed that wasn't mine. 

I'm amazed at the difference a year makes but I know it could change tomorrow and I could be back in the hospital with out any regard to my personal life. But health trumps all. 

I'll fall asleep tonight humbled by the love I'm surrounded by. The opportunity to have a home and feel some independence is something I never thought I'd experience. But as with many things I know it isn't promised for forever. 

The home I live in is definitely built and surrounded in love. I find myself at times stopping and saying "I'm a lucky girl" and with tears in my eyes I know it's all mine and thank god for the love of my family. Without them this life wouldn't be what it is today. Perfect. 

Friday, January 3, 2014

Your love vs My love

I wrote this Christmas night
 Better to post it late then never. 

Dearest Matthew 
Your sleeping like a rock and I'm struggling to find a position that doesn't make me burst into tears. I hear you snoring and even though it's hard to get use to I love that sometime I enjoy the comfort in hearing you sleep even if it's noisy. 

I'm sorry I have been unwell lately and even though you say it's not something I need to apologize for I need to say these words regardless. I'm sorry for when I'm not feeling well and you take the brunt of the stress and fatigue.

It's easy for me to look at myself and see very little but I sometimes I don't see the wife you deserve. I just see a broken girl with a broken soul trying to love someone who loves in the most deepest and unconditional ways possible. 
Being sick is our biggest burden but it's not your burden it all falls on me. 

I struggle to be the daughter your parents deserve and the sister your brother and sister need. I struggle with being the wife you deserve.

I'm tired of telling you I don't feel well. It makes everything feel so depressing and makes everything so much more negative. And that's why when you ask how iam it's easier to lie and cover the pain because I don't want you to worry. 

I know when our families look at us they see such different things. Your family sees me as this "well" looking young woman but they don't see the struggle. So when I come up missing in family events I hope they give me the benefit of the doubt. I choose not to let your family see me weak. Iam more then a weak person and I hope they see how much I do love being part of their family. 

My family looks at you and sees love beyond all limits. The way you are to me makes them proud to have you as there family and I just proud that you are mine. 
I have disappointed you again by not coming to Christmas dinner tonight and I 
know this won't be the last time. 

Sometimes I wish I was able to pick my good days and bad days. You deserve to have good days that benefit you. 


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