Friday, April 29, 2011

A Royal Day

So, I kept telling myself I could care less about this royal wedding, since really what significance does it have in relation to me? None. But after watching the hype for the last four days (as I tried to avoid it before that). I woke up this morning (nope, not at 3) but at 6:30 and was super exicted to see Kate's dress. There is nothing more fairytale than watching as a royal couple comes out onto a balcony for a  kiss. We always dream for our prince as little girls and here is a story book come to life. I wish them well, I wish them to skip the ugly fate that has plagued too many royal couples. So not only do I wake up to a long awaited sunny day but also to beautiful wedding photos and fairytale kisses (or pecks).

The second part of my day and the real highlight that I have been looking forward to was a visit to the Chiropractor. I have never been to one, but I had decided I was tired of living with this stupid hip pain that has bothered me off and on for the last five years. I spend so much time trying to fix my lungs that I avoid all the other broken things on me. Which maybe having fixed this sooner it might have helped my lungs. In any case, no looking back because again, hindsight brings us nothing to fix where we are at.

I walked out of there feeling almost lighter, it really felt great getting my spine and hips cracked. Now I will admit I was a little scared. I didn't know how the whole cracking thing would go and I have to laugh at myself because I gave this great loud UGH everytimes she cracked something, but it felt good. It was just this weird natural reaction to make that sound. I will go back again next week and work on this hip. It already feels about 40% better since I left there. I also found my muscles are like rocks in my upper back and near my hips. So, now having done it just once I am an advocate for everyone going at least once, I still felt like she was going to break my spine but, she didn't and I feel better for having gone.

So, if you question going because you have back or shoulder pain, and like me have had x-rays or MRI's that show nothing, then go to the Chiropractor, give it a try and see if they can help. I am sure you will be walking on air, kind of like royalty, when you leave.

Cheerio my friends.

Wednesday, April 27, 2011

Someone else's eyes

I never like to visit my doctor, not that there is anything wrong with him. As a doctor I couldn't ask for better, as a person I think he is a good human being. But I don't like to see him because I don't like to see the truth. It is always through his eyes that I see how I am doing. Today was not a good visit.

I saw the good Doc today in preparation for the sinus surgery that I thought I avoided but as a good patient trying my best to give a transplant the best outcome I said I would do the surgery, as per the Pulmonologists request. So on May 26th I will have a drill put in my nose and beyond there I really don't want to know the truth. Sometimes an ostrich is a good thing, other times it is not.

As my weight continues to be an issue, which until today I thought I was doing okay but apparently I am not. Through his eyes I see that I am carrying about 5 pounds of water retention because the effect my lungs are having on my heart and my heart has to work harder to make the lungs and the rest of my body happy. Problem is I need more fat, what I thought was fat is not. I honestly don't like looking at myself in the mirror anymore, because I can see what I have lost especially in my upper body and my arms, but I have refused to do anything about it, to really push to get it back. Why? Well because I am tired and I am still trying to work and I am still trying to live a "normal" life. I continue to try to survive on my 3 square meals a day and frankly it isn't working. Eating my big supper makes me feel awful and effects oddly enough every part of my day. See if I eat at 5:30 a big meal than my food sits there and I have to wait until 9 to do my vest which takes an hour, then it takes me almost 30-40 minutes to get into bed after rinsing nebs and normal get to bed things, sometimes I eat, when I don't it goes a lot faster. But if I don't get to bed until after 1030 then it makes getting up harder and if I can't get up until 7 then the whole day is off once again. I don't know why I can't fix this mess, I am frustrated that I can't seem to find away out of this mess but yet is it that I can't or that I am refusing to change?

I don't come from a family of grazers, I don't know how to eat 8 times a day. I don't know how to eat Camembert (that would be fancy cheese with incorrect spelling) on crackers. I don't know how to eat like that, I don't know how to find the energy to exercise beyond my 30 minute treadmill, I don't know how to get muscle back and I need to do all these things. Through the docs eyes all these things need to be fixed to help me have a more successful transplant. I just don't know how to get there. I feel scattered and disjointed everyday. Some days this fight is so hard and then days like today when the reality of what I know but chose to ignore hits me in the face, I crumble.

I have a long road ahead of me, I have the a difficult blood type for transplant, I have antigens, I lack some antibodies. This could be a long wait and I have to try to tie the knot at the end of my rope and hold on. I just hope I can keep holding until that call comes. I don't like to feel this sad or this unsure, but when I see myself trough the good doc's eyes I can't ignore the truth. I just can't let him win with the feeding tube discussion, I have had to do so many difficult things already, I am not ready for that one. Just give me one thing I can do on my own dear God, give me my love of food back and help me find ways to get fat back and find some answers..

Whipping cream, here I come.

Friday, April 22, 2011

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 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.

Thursday, April 21, 2011

The Wave

My first memory of waving good-bye was when I was three or four, which made my brother five or six. My brother was heading off to wait for the bus just at the end of our driveway. I remember I was holding my little red and white drawstring purse/bag with the metal buttons on it and telling him I wanted to go to school with him. I remember my mom next to me as we talked to him out the upstairs living room window. I didn't know what school was but I am guessing my playmate was leaving me and that had as much to do with me wanting to go to school as anything. It was from that window that I waved him good-bye as he went off to a day of school while I stayed home with Mom.

The wave was something my family has been doing forever, well from at least my first memory of that day with my brother. We always stand in the window, and wave when someone leaves. It didn't matter if it was for a couple hours, a few days, or a journey ahead, a wave was as important as the hug or kiss before leaving.

As I stood in my open doorway tonight waiting to wave as my parents headed back home I thought about all the times I have waved and been waved to.  If it wasn't the door it would have been the window, it's just an unwritten rule and it has followed all of us kids from our youth to our own homes.

I guess waving is like saying, I am still thinking of you, I love you and wish you safe travels, please come again. It is nothing for us to wave and wave until the last second when we can no longer see the person leaving drive down the road. Every house my parents have lived in they find a door, or a window to wave from, not not an option. I remember when Chris left home from our town-home for the first time and I waved from the dining room window. I also remember how I felt the first time he waved to me out the window as I left, it meant the world to me that he would take the time to wave, and we continue it today.

If there is a will there will be a wave. I guess it is as much about knowing that there someone is willing to give you those few extra seconds or minute to say one last goodbye, to not just run off but to let you know that you will be thought of even after you are gone.

It's a simple gesture, but a loving one.

Wednesday, April 20, 2011

Oh, where did my patience go?

Having an ECHO is probably one of the easier tests their is, unless you have a heart, or lung problem and you have no body fat on your torso. I can't stand to lay flat, unless I am sleeping, for any amount of time and yet the ECHO requires about 1+  hours of laying flat. While the technician tries to take pictures of your heart with a little a rolling device, end the size of melon baller. Problem is it seems that they have to push, REALLY hard to get the picture and frankly my ribs don't like to be pushed between when there is no fat to cushion, like he's trying to pierce my skin with a knuckle. Then to add to the fun discomfort they 'hold your breath' circus begins, where ever second of breath holding is like an eternity, followed by a rapid catch my breath before the cycle begins again. Seriously, I am on oxygen for a reason and holding my breath is the equivalent of putting a present in front of a five year old and telling them they have to wait fifteen minutes to open it, just watch them squirm.

I just don't have the patience to lay, to be uncomfortable with the wand, to cough or try not to cough too much as to make his job harder because I sure know I don't want to stay for longer than necessary. Then to have an IV stuck in me for a two second test at the very end. I guess when a healthy person lays there it probably isn't a big deal, but then if your healthy, you likely aren't laying there. I hate that I can't relax and just take the moment as it is, but being uncomfortable is not something I seem to be able to tolerate a whole lot anymore. I tried to put it in perspective when the nurse told me of another heart test where they put a scope down your throat, well that made me pause because I would hate that a WHOLE lot more than I hate this.

Upon completion I drown my sorrows in McDonalds. Which didn't exactly help but it at least helped the hunger I was feeling. And now I can crawl back into my comfy clothes, and try to shake off the frustration of the morning.

I just wish I could be more patient, I am sure I will visit this topic again in the future as it seems to be so bothersome to me. I used to be able to tolerate so much, have I just been worn down, is it just because I spend so much of my day feeling like shit that I don't enjoy adding to the discomfort. Yet, I feel like I should try to get some control on this because after transplant there will be a lot of pain to deal with and many clinic appointments to start. I wonder though if I will, upon being able to breathe, lose a lot of this patience issue. It will be interesting, to say the least.

Now I am going to go see if I can find patience for sitting and working. Guess this patience things goes beyond the clinic...

Tuesday, April 19, 2011

Life's little treasures

I wonder what it will be like post transplant to be able to sleep in, or even go back to bed after getting up to do something and not start coughing. I wonder if I will ever get rid of this stupid guilt I feel when I don't think I am doing enough. By enough I mean getting enough activity, like sitting and reading a book now a days for me is like a guilty thing because I should be moving and keeping my lungs clear.

I struggled this morning after my vest with staying awake or laying back down, initially I sat hunched in the chair like that was some sort of sleeping compromise, a short nap in the chair versus a longer one on the bed. I gave in after two seconds of staring from my chair to the bed in front of me, I swear it was calling my name. So I gave in. Nothing feels better when you are so tired, or sore (which yes even being awake an hour at that point having done my vest) I was both things. I curled up under my blanket and drifted of to dream land. Which my dreams now a days have morphed, I used to dream frequently that I couldn't find my class at school, or forgot my locker combination, or heaven forbid it is the end of the semester and I realize I have spent no time what-so-ever in/on/or at one particular class and I panic. Well I now have dreams, as I did going back to bed this morning, of not finding my way around the clinic/hospital. For some reason I seem to have a room at this 'hospital' that resembles nothing of the hospital I stay at, and everything looks so sterile and nice and yet much like an office. I always end up in a weird or broken elevator, or with interesting people who are healthy and I walk around in a gown and don't seem to fit the situation.

I guess I will simply decide that these dreams are of things yet to come, of the confusion or uncertainty that the transplant will bring me. Probably to Freud, he would say this is to simplistic, but sometimes life just is. I have days where I worry about the transplant and scare myself, and I have other days like today when I can't seem to get this diesel warmed up to get going, that I wish the call would come. I am scared for the unknown but this is so hard to keep fighting somedays. I just want to sit down and do nothing but I can't because I could have a whole year to wait and I am not going to gain or maintain anything by doing nothing.

So, this weather doesn't help either. I need sun and warmth to help my body feel like it can keep fighting this till that call comes and snow and cold doesn't help at all.

But I try to take notice of the little things in my life that are important each day to focus on. I have my family, I have my house, and I have my mind. Even though I can't find my way out of today's fog I know, and always know there will be a better tomorrow, whether it is literally tomorrow or six months from now. Thing always gets better and if I don't believe that then there is nothing to live for.

So even though I am frustrated today I also know what a treasure it is to have it, because without today there is no tomorrow.

Wednesday, April 13, 2011


Spent over an hour tonight alphabetizing records, 99% of them 33s. I have wanted to alphabetize them since we bought our record player back in december. Seems whenever I wanted to find something I had to go through so many records and in the end listen to something completely unexpected, which is a sense is a good thing. I counted over 150 records, some with covers/sleeves that are in really good condition, other still in plastic and other so dirty my hands felt awful after touching them (wonder where those were stashed). For the first few years of marriage the records were in our attic space and we always figured we would create a listening station in the spare room, we never did.

Maybe that was a good thing because here in this house, it is perfect. So enjoyable to have our main living space be not a TV watching room but rather an easy relaxed listening room. Somedays we work around here listening to the likes of Johnny Cash, Rush, Creedence Clearwater, Neil Diamond, Journey, and Chicago to only name a few. Just realized we have no Kenny Rogers, guess we are going to have to find some. KISS seems to have the greatest number of albums in the collection followed by John Denver.

It is so great to listen to the crackling of the records and knowing that I have to sit through the songs I don't like to get to the songs I do, I can't just hit skip, and frankly it is too dangerous for me to move the needle. I am way to shaky. Everytime I tried to do something small and careful my hand starts shaking like I am making my first surgery cut. In any case, it is kind of cool to just let things be as they are for once. We are so used to just changing something if we don't like with this digital age. Mind you I don't completely understand electricity and radio waves, I know I have had these explained to me a million times but it still perplexes me. Well frankly so do records, how on earth do you get music out of little lines on a piece of vinyl?

Don't get me wrong I love listening to Pandora on the computer, I can put in any genre or singer and have music instantly. But there is something about the historical significance to records and the relaxed attitude that comes with listening to it. Or when listening to Journey the need to belt out at the top of my lungs each song I know (or shall we say, think I know) the words too.

So now that I have practiced my alphabet and saw records that I would love to listen to, but after 150 records I kind of forgot which ones those were. But the nice thing is I can start at A (Al Martino) and walk my fingers to W(Walt Disney) and find something in there that will suit my mood...or desire to sing.

In honor of Journey - Don't stop believing....

Sinus Surgery

All my worrying over sinus surgery was for nothing. The ENT doctor said the same thing he did three years ago when I was there. I comes down to the fact that I am not bothered by my sinuses, and even though they are not fantastic, aside from getting ride of the sinuses all together, there isn't a good reason to clean them out. My best job is to rinse them daily and when the time comes I do get headaches or the like then he will be happy to do something. I was always under the impression that sinus surgery was a must for transplant patients, I guess I was wrong, or somehow I have golden sinuses.

In any case as long as it is the right thing, I am okay with the decision. Wasn't looking forward to it anyway.

Besides, even though I don't have sinus headaches, I have enough 'headaches' just with life in general.

Here's to April showers.

Sunday, April 3, 2011

Playing Catch

I was standing on the deck last evening waiting for Marco. It was a little damp and cooling off, the sun was beginning to set and then I heard the thuamp of a ball being caught in a glove. Everything about that moment reminded me of a kid playing catch with my Dad in the yard. I miss those days.

I remember that I always dreamed, as kids usually do, that I was going to be the first female outfielder for the MN Twins. I would go along with the greats of Kirby Puckett and Kent Hrbek. I was probably 10 when I was dreaming that but I always tried really hard not to throw like a girl, that was like the worst absolute comment anyone could make. I remember even in school when we would play ball that it was in my every effort to throw that ball like a champ, not a girl.

My Dad was always a good teacher whether it was playing catch or how to start the lawn mower he always had the utmost amout of patience. I enjoyed spending time with Dad doing anything, didn't matter if it was playing catch, or following him around the yard or house doing various projects. Come to think of it I really had the best of both worlds. I had a Dad that fulfilled the tom boy part of me and a Mom that taught me the refined girl things. I would spend hours watching my Dad dig holes, or cut trees, or finish the country basement and so many other things. I would go shopping with my Mom, sit in the kitchen and chat while she baked and tried my hand at baking from time to time, and learned to iron on Dads hankys.

I guess today that is why I feel I have the ability to do, or learn to do just about anything. If I weren't forced into submission by this lack of oxygen and low energy I would continue to push to do things daily. I had great teachers for sure and I enjoy all the memories I have of of being a kid.

The air last night felt just as it did in the cool evenings when I we used to play catch all those years ago. Funny what can trigger a memory. Somehwere out there some child that I can't see, but can hear, is playing catch with his Dad. I hope he remembers some day how special this time is.

Play ball!