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.

Mmm, a well rounded day

An early start to the day as I was to the hospital by 6:30 for my second bronchoscopy and biopsy, I will say I was a bit nervous. Considering my last bronch which came back with rejection that I didn't even prepare myself for. So, today I hoped for the best but know with transplanted lungs anything is possible.

But today I have no rejection, I am so thankful and slightly more relaxed. On top of that good news I made my first batch of cookies with my mom, Sarah's pecan puffs, no not my recipe, and can I say they taste pretty good. Last night we made Carmel corn, let's talk addictive when it comes to Carmel corn. Sometimes I wish I had more than one stomach as the one I have fills up way too fast. I really look forward to the day when I can eat and not be uncomfortable, but that to will return. Kind of cruel to want to eat all the time but the body disagrees, guess I am used to that.

Not sure what cookies we'll make tomorrow, have about 5 or 6 more varieties at this time. I can't wait, I think I'm more excited about the holidays for eating than anything.

Happy baking, and eating!

The Lottery

I was riding home today from Target, yes still riding in the back seat until my ribs heal, and the thing about riding is I get to observe things around me and today it was the lottery sign on the frontage road near Quality Woods on highway 52.

The lottery sign said, "What's Your Dream?" Or something similar and for a second I thought about what I might buy with $100+ million and as quick as my mind went to answer, it stopped. I thought what in this world would I do with that kind of money but more importantly what could it buy that I don't already have. Life is so fragile that anything I might buy is pointless if I died. So that last part might seem morbid, but after all money just buys stuff, it doesn't buy more time with the ones you love, it doesn't buy you more time on this earth, it doesn't take away pain and it doesn't bring back the ones you love and miss the most. It doesn't bring you forgiveness, or a closer relationship with God, it just brings you more crap that someone has to do something with once you are gone.

Don't get me wrong I love buying stuff as much as the next person, thus the reason I go to Target, but in the end I groaned about the price of makeup powder and opted for a price in between cheap and absolutely ridiculous, that and it was the only name brand makeup that gave me an option. 

I guess what I am trying to say is I realize that money, however important it is to pay the mortgage and bills, beyond that it isn't important how many cars I have, the size of house or the stuff I buy to fill it. Forget trying to win the lottery just try to enjoy each day for what it is and what you already have and when you see all the things you already have and the important people in it, that's when you know you have won the lottery.




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The weekend

Today is Friday, which means the weekend is here, yea, or is it. Since being home from transplant I have an issue with time on my hands and I know I shouldn't complain seeing as I wished for it for so long. But this is unusual, part of it I suppose has to do with my body not letting me do things I want to, like standing for a length of time to do something, such as painting or work in the kitchen. Standing is tiring work, more so than doing the treadmill, which is also tiring but in a different way. I am also at my parents so it's not like being at home where you can putts around and do nothing but yet something, ya know. 

I still feel guilty when I sit and do something, like I should be doing something more productive, so now I have picked up knitting, I seem to have a bit of trouble on my yarn overs adding more than one stitch at a time, but practice makes perfect, right? I would bet my friend Karen is saying why did I pick up knitting when quilting would be an even better pastime, and I have thought of it. Frankly there are too many things I could do and want to do that I need to figure it out. I am usually out of the clinic by early afternoon so I have a whole afternoon to do something. I should head downstairs and finish painting my sisters painting so she can have it sooner rather than later.

Just a few short weeks ago my life was full of therapy, and therapy, and therapy and now there is none, I repeat NONE! So, see I can't complain because I got what I wanted and I don't know what to do with it.

As an update on my lungs. I was in clinic today, my weight has gone up a pound, which could be water retention but regardless I have been above 100 for over a week now and I will take it. My FEV1 continues to go up, that is my for forced expiratory volume in one second, I am currently at 64% lung function (maybe a bit more as I forgot to ask the percentage today), to put that in perspective, on June 13, the last time I had an FEV1 with my CF lungs I was at 15%, now how's that for a reason to be on a ventilator because the next day I crashed and two days later I a had the vent on me. I hopefully will continue to increase that over the months, potentially the next year.

I go in on dec. 8 for another bronch with biopsy, and pray there is no rejection, a bit nerve wracking. One day at a time, right. I am settling in a little more with my lungs, it is still hard for me to know when to say something is wrong or doesn't feel right. With my CF lungs there was always a pain or odd feeling or coughing something up that healthy lungs are hard to understand, it's getting better as the weeks go by. Now life will really be different when I wake up with no pain, that will be a day for celebration.

Ok, enough for today, between wanting to eat Christmas cookies that haven't been made and wanting to do way to many things I think I need to put my focus somewhere other than the computer, though I am still looking for good holiday crafts, oh what complaints huh?

Happy days to you all!

- Posted using BlogPress from my iPad

Can There be Too Much Art?

On Saturday I spent two hours working on my sisters triptic, I have put a lot of hours into it and really thought I was mostly done...I was wrong.

The last time I painted on it was in September I believe when I was in the hospital but I hit a wall and refused to work on it further, I believed I would one day finish it outside the hospital. I certainly believed I would and I am nearly there, at this point anyone who can mix two colors together could finish it but I am so happy to see it come together as it has.

Mostly though I am excited to be able to focus on something beyond my daily goings on related to my health. I am also able to focus enough to read, part of this has to do with going off the heavy drugs and sleeping pill. Been four nights since I took a sleeping pill, doesn't mean my sleeping is great but I am hoping the quality is better when I finally do fall asleep. Last night I finally gave up after an hour and a half of tossing and turning and went to the couch, fell asleep instantly and stayed there until four am, go figure.

Well I am off to the mall for some activity, aka, black Friday return. Wanting a pair of black boots, can't seem to find what I want except on other peoples feet!

By the way where is the sun hiding these days?

The Good, The Bad (but could be worse), and the Ugly

As with everything in life there are multiple facets, as I have found to be the case with new healthy lungs. 

The good, by far the best, part of this situation is no ventilator, no suctioning volumes of crap a.k.a pus from my lungs every hour like a drippy faucet that won't quit, no vinyl mattress to sleep on, no nurses at three in the morning to hook up a med, on the same note no stupid iv pumps randomly screaming that they need attention just the moment you fell asleep after laying awake for two hours, and of course the ability to enjoy things again like reading, or watching tv, or playing the wii. Also, I am absorbing all my drugs almost too good, that is new. Oh I forgot the best, I can now make it to the basement, well more importantly back up the 16 steps, yay!

The bad (but could be worse), did I mention no vinyl bed or nurses waking me, the bad is I still can't sleep without drugs, still have to get up at least once if not twice to pee during the night which is super annoying especially if I have just fallen asleep, and up until yesterday I dreamt a nurse was at my bedside during the night (no nurse in particular just a nurse), trying to gain weight but avoiding too much salt, and now too much potassium. On the vent unit with my CF lungs I was always low potassium, now I have the opposite problem and it is sad how many things I like to eat are medium to high in potassium. Of course the elephant that still sits on my chest daily from being stretched/contorted in a very unnatural manner, and the sternum that is wired back together, but I say it could be worse.

The ugly, basically that comes down to the reaction to the drugs, the shakiness, which I am afraid will effect my art and detail ability (we will find out today), the broken out or acne skin, I hate that but hope it I'll go away in time, and my favorite 'ugly' the socks I wear to keep down the swelling in my ankles, if you are familiar with Mama, from the show Mama's Family and her rolled down brown knee highs, that's what these are like. Hopefully I won't have to wear them this summer with my shorts, sundress or worse yet, my swimsuit. 

So, there you have it! I think my lists probably could be longer but that's what I am thinking of today. I am off to do something productive, maybe even creative, while I continue to consume my eight daily magnesium pills, yup, I may not be low in potassium but I make up for it in magnesium depletion.

Have a great day, enjoy those Christmas decorations as they start going up today.

Being Thankful

Been busy lately with the clinic and haven't been sure what exactly to write about, maybe that's a good thing for once.

I was in clinic Tuesday and saw a doctor on transplant I haven't met before, I was a little nervous as it is difficult to meet someone new when the same people have been part of your care for the last while. My one doctor has been with me for over 10 years now and he can read me like a book, which is probably a good and bad thing, he calls me trouble and it makes me laugh inside every time. I have a tendency to ask a lot of questions, and worry pretty much about everything. It's a wonder I can make it through this without worrying myself crazy.

I was reading a post today of another CFer who had a transplant over a year ago, I went back to when she had the surgery to see her account of how she felt and coped in the weeks and months post transplant. She was so thankful just within days after her transplant it made me question how I was feeling. It isn't that I am not thankful it's just that I can't seem to wrap my head around this new life I have, or the fact that I have the lungs of someone else inside me. I think of the donor and I pray for their family and the fact that they made the decision to donate their organs as if they didn't I would still be sitting on the vent on MB6F, and only God knows how much longer I would have survived there.

This journey is unknown, many have done this before and have succeeded and there should be no reason I should think otherwise, but right now it is so hard to see the future. Between this constant pain in my chest, the elephant to seems to have taken residence right smack dab in the middle of my chest thanks to being cranked upon like a clamshell. So, even though I am not at a point where I am going to gush over the fact I have new lungs, and my life is so much better, and I can't wait for the future to begin. I rather take this hours at a time, as some day I hope I will tell you that this was the best decision I ever made in my life. Right now I can't say that but I can say that I am so thankful to all the people who have keep me in their thoughts and prayers these months, and that I am off the vent and that I get to see my family in the home setting and celebrate thanksgiving at the table with my parents and husband. It maybe a quiet Thanksgiving but none the less thankful to be celebrating just being alive, for today being alive is enough when every ounce of me wants to sit and relax and let the pain wash away but I push through another minute another hour so I can one day look back and be fully thankful for all this pain as it will one day bring me to enjoying more things that I haven't in years. Things like taking a walk and being told to slow down, watching my nieces and nephews grow, visiting friends and family, and taking a vacation that I haven't done in five years, that is my hope.

I will continue to push forward as there are too many people have hopes for me that probably are greater than my own and I owe them to push onward.

Wishing you all a beautiful, tasty, thankful Thanksgiving.