My Moments to Breathe

Thursday, August 8, 2013

Work, meds, WORK!

I am home now and still not feeling the best. I still have a hack and stuff stuck that is rattling around. I got some of it out a bit ago and, yes, there was quite a bit of blood in it. FRUSTRATED. I am sick of being sick.

I was blue sitting in the hospital (hearing the helicopter go back and forth) thinking how I wish I could just feel better. And the thing I have to look forward to is a transplant. Meds aren't cutting it like they used to. Heck, I can't even take oral antibiotics anymore to help fight crud. I can't take care of my daughter like I should be able to. She is in MI right now and I miss her like crazy, but think of how glad I am that at least she is being well taken care of and can be a kid without so much worry (I talked to her and was coughing, poor baby asked if I was OK and if I got rid of my CF yet?) I don't want her to worry about her mom and her health. I feel so guilty. The thought pf a shower is exhausting, and not even mentioning any trip to the grocery store. I just want to be a normal person. I want to be able to do the little things again. I hate this.

Jer Jon has been so good this past week. He even made me homemade scones and brought them to the hospital. Plus brought me Arbys...YUM! I am thinking (dont tell him) that tomorrow I will make him an awesome dinner followed by sitting outside and enjoying the last part of summer in peace and quiet. (or maybe invite people over!) Thanks for everything you do, even when it is a pain!

I am now back to the point and healed enough from the dry run that I am ready for my phone to ring.. NOW...ok...NOW! Hmmm, a watched phone really doesn't ring. I am not sure I will be fully healed from the drama that went on during those 24 hours until the real deal is done (not to sound like a cry baby.) But little things hit me, like...when I was coming home I was thinking about it should have been coming home after transplant mending and feeling better. Not going home in hopes to feel better and get enough 02 in those lungs to last until the next call. 

I know I am not the first, and by far not the last person to watch themselves slowly die...but it doesn't mean it is any easier. It is scary. I am not scared to die, because I know that my Savior will greet me with open arms and I will feel no more pain. Really that doesn't scare me. What does scare me is all the things left behind here. Laila needs a mom and how can I do that to her. She is so strong, she really is. And I know she is going to be such an awesome woman one day, But she needs a mom too. I want to be that Mom and I want to watch her life and be there to support her. I need to tell her things that my mom told me. Maybe I just need her more than she needs me...who knows. 

I am looking forward to having a sanity break this weekend. YAY for visitors to help Jeremy and I get our minds away from CF and on to some fun things. Even if I am on 02 and sitting in a wheelchair for part of it (or at least walking veeery slow and taking breaks) I will have a good time. I will get dolled up and go out. I will be the old me. PLUS I GET MY GIRL BACK!!

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