Thankful

Being at home as much as I am, and alone, I have a lot of time to think. This can be a good thing and a bad thing. When I have time to be in my 'studio' I keep the music playing just to drown out my thoughts.

Last week Wednesday afternoon I was sitting with a new doctor, a hypertension and nephrology doctor. My blood pressure has been high and my kidneys are working at about 50% of what they were before my transplant. So my current standing is this, diabetic, hypertensive, high cholesterol, kidney issues, and bone density which has decreased instead of increased as hoped. So never having met this doctor and he not having read my chart AT ALL, before coming in he was surprised to hear my whole story in about three minutes. What I walked away with other than three new prescriptions is that my life before the ventilator has become a blur. I am not sure if that is because that life no longer effects this one because I don't have those lungs or what. Every time he asked a question it was, 'I think before the vent' or 'maybe it was on the vent', I just don't know. Call it PTSD or just plain forgetfulness but how does one whose life consisted of such turmoil day in and day out forget so much?

I spend many days going between two thoughts, time on the vent and my new daily life.

Having been on the vent is such a long time ago it has been over a year since my transplant. I however can put myself back in that room in a heart beat if I let my mind. I have moments in time that I remember. I have memories of my aunt being outside my window across the street waving, that was priceless and also one of my best memories. I remember my grandma's last visit, and sadly her funeral via internet from my room as my brother set up so I could watch it as it happened. I remember when the panic would set in every afternoon toward, the end, as my mom would wash my hair, suddenly I felt like I couldn't breathe. The fear of having a machine breathing and being in control is scary. I remember the night RT Ashley sat at my bed side while I fought with the vent, feeling it wasn't in sync with me.

I remember the night before my transplant when the article came out in the paper, for the first time in months I felt calm and didn't go to sleep wondering when it would come. Chris and I had finished Seven Brides for Seven Brothers, Mark was my RT, and Nicole was my nurse. Thanks to my pastors for bringing me to a point of contentment too, I was ready to leave this earth if that was the plan, I was tired of struggling, tired of waking up at six every morning to the same routine, and hating every suction and every beating and every vest time. The best part about RT was the therapists, not all mind you but the good ones know who they are. The lack of control in everything was the worst, when you are always in control it is a nightmare to let go.

Skip forward 12 months. This past week being Thanksgiving and all about being thankful, I was blessed to spend the time with all my family this year. First meal back at my mother-in-laws house since Spring of 2011. This Thanksgiving my siblings and their children all came for Thanksgiving and I got to spend every day with them. I even had my brother, sis-in-law and the two nieces over for lunch and we got to do some artwork together. As I was moving about that day and up and down stairs I couldn't help but think how great this was and how lucky I was to have these days with all of them. I sometimes stop and wonder what would be going on if I hadn't made it. It doesn't plague me, but I do wonder. I also know that someday that will be the case, but I will cherish these moments. I will cherish the things like Kai saying the word 'her' instead of 'she', or the way he crinkles his face. I will cherish the way Josie always finds a way to be close, even as she gets older she isn't afraid of laps or hugs, or any form of affection. How Grae sits and reads a book so big I would have cried at her age if someone gave me it, but she loves it. The girls laughing together is like music. And Cooper the one who didn't get to stay, that boy has so much love in him and he is so sweet.

Each moment is priceless, and my family means the absolute world to me. I would be nothing without them, they have been through hell and back with me.

So maybe there I days I think too much, but I maybe that is a good thing. I get to chance to relive the worst part of my life but followed by the best part of my life. It may not be perfect but being able to have one more day is better than anything.

Old Lungs

WARNING: Here are photos of my old Cystic Fibrosis, bacteria ridden lungs. The creamy colored parts are pus that has collected in the airways and the open 'holes' are airways that obviously not functioning as they should. My doctor said they were basically two bags of pus, and he was right. But my nurses and rts knew that when they suctioned me. Healthy lungs are pink.

Fair Warning: Complaints Ahead

I have decided to rant today as usually I do pretty well staying positive with all that has gone on. I think I have done a good job of keeping things in perspective most days, I have had a few days of being crabby but I think today has finally risen all frustration, angst, anger, and resentment to the top, I am boiling. I feel this way because I feel miserable. I have had it with having to do, medical things, I am tired of this pain that constantly plagues my chest, my stomach that can only take small amounts of food before it feels so awful that the only thing I can do is lay down. I have lost weight five pounds, again and will likely have to use my mic-key tube again to get the calories back, which I really don't want to do, even though I have it for a reason. Seriously, sinus surgery was the last thing I wanted, and it feels like it set me back about a month.

I am still in constant pain/discomfort with my ribs and nothing seems to help, my brain is tired of trying to trick my body into feeling better. My best distraction all week has been watching Hot Tub Time Machine, and for anyone whose seen that movie knows it certainly isn't an award winner but it does distract, especially John Cusack, which I guess that would be the highlight of my week. We both get older and he still looks great.

How does God or the universe of whom ever think that I can keep dealing with these issues, my body is exhausted mentally and very much physically?  I know I have come a long way, I have gained muscle in my legs and that is huge, I am becoming much better at knitting after thinking I was going to drop that hobby like a bad habit almost as soon as I started it. I just don't know how to keep up with myself. I just really want to sleep and yet that is something I can't do all day because I need exercise to keep these new lungs going.

Every time I think CF was better than this my dad gently reminds me of where I was at before these new lungs, and he is right and then I try not to go down memory lane of the vent unit and my life at home before this all happened. I tried to watch White Christmas last night, my all time favorite Christmas film only to realize half way through that Rosemary Clooney was on the same vent unit as I was before she died, so I had to turn off the movie. Maybe next year it will all be behind me. I have always loved Christmas and our family being together, I love talking and laughing and having a good time together and this year will be different due to my immune supression, but I do understand and I know my siblings do as well plus they have new plans this year and I wish them happy travels.

So, I guess I have reached my limit and want to have a break for awhile...from myself and that is unlikely to happen. I just wish and pray that this chest discomfort would be gone when I wake up tomorrow so I can go back to functioning and do things that will bring me joy, like painting.

Saying "When"

The hardest part for any CFer is knowing when to say 'when'. By that I mean when to say I can't do the things I love because they take too much out of me or when to say when before CF gets to the point that it will take too much out of you. I have been there. I have been in the spot, especially when it comes to work, that I put work before I put myself and I refused to believe that there was any corelation between working too hard and not feeling well. There is this ability to push and push and push and not acknowledge that things have been slipping away a little at a time. First it's the getting out of bed, you used to love early mornings and at some point the idea of rolling out and getting the day started sounds as about as exciting as a poke in the eyeball with a sharp stick. But you push through, then it moves to trying to get things done around the house, the dishes stare at you and you stare back cursing food and the necessity to eat under your breathe - do yourself you stupid dishes. Then you find pulling weeds that the summer before wasn't super easy has become harder than the year before and you just say it must be a bad day. Excuses roll out of your head like a red carpet at a hollywood event. There is always an excuse for why things become harder but at no point are you willing to say, it's CF, it is taking hold and I am heading down a path I don't want to. You think that you are going to wake up one day and it will be better, it was all just a cold or something settled on your chest that just has to pass, because it used to do that - but why isn't it doing it anymore?

I worked my butt off for six years, going to work with bleeding lungs, even a collapsed lung and tried to get back to work as soon as I could after an absence, which never were very long. I was determined to live as much of a normal life as CF would allow me but also pushing when I shouldn't have. But then you also stop and say, what is the determining factor in how hard we push, in the end this disease is going to take us down and our choices are to live it the fullest as much as we can, or hold onto what we have by not doing the things that we know will harm us. It isn't easy always telling people no you can't do something, but when you know that you will likely feel like shit for two days or two weeks after you do something or attend something that is a big decision.

I don't think most cystics see the reality of what has happened until it is too late and yet not all cystics are the same, some will live a long life with their own lungs and have families - because that's just how different this disease can be. But for those who struggle for years with collapsed lungs, infections, and bleeding pulmonary arteries, you learn to make concessions.

After six years of pushing I am ready to give up the one thing that likely helped put me in this position I am in. I am not saying it harshly or that I have regrets, because I don't. I am pleased with what I did, and where I brought design at work but I am ready to conceed, I no longer want that stress, I no longer want it to take from me because there isn't much more of me left to give and what little I do have I would like to reserve.

As CF takes things away, it also gives something...it gives insight. Insight that life isn't the job, it's about the sun filtered through the tree casting a shadow on the house, or the flowers stretching and unfurling after a long fierce winter, it's about the dog sitting on your lap as you type because he loves you more than his rawhide or his own bed, or the roof over your head, or the soft couch under you. If only we could make money on those things we would be more rich than any job we could ever have.

I am here another day and that is enough for me.