Thursday, May 26, 2011

Back in pain

Literally, my back is in pain once again. A great day of coughing up crap. Love days when it just comes out with not too much fuss. But I guess I coughed maybe a little too hard or something, so here I am back in back pain once again. Since last time the pain was not something they could see on an x-ray I am taking this pain tomorrow to the chiropractor...wish me luck. I am hoping it is just a muscle or a displaced disk, sounds nice, but anything but a lung issue. Maybe it's just a mucus plug, not the pregnancy kind but similar. I have had a couple plugs come up and am hoping that I just have a nasty big one stuck and it just needs to POP out. So I say POP already, I am tired of this torture.

So last night I was standing at my basement door waiting once again for Mr. Marco. It was raining so I just stood leaning out the patio door under the deck as the rain dripped down all around me. The leaves on the trees were moving with raindrops and I was always thinking it was something moving in the tree. You would think after like ten times of saying to myself, 'oh what's that?' and answer for the tenth time, 'oh, just the rain' but nope I kept looking for something and I am  not really sure why it mattered or why I cared. We have a very bird filled backyard. So even on that note why would it matter if it was another wren, or cardinal, or chickadee? I guess I must just like seeing things. And just like that my wish was fulfilled, it wasn't just a bird, it was one I have yet to see in our backyard, there in the dreary evening rain in front of the most fragrant lilacs, a hummingbird. I blinked as I thought I was imagining it, wondering if it was my imagination but no, it was really real. It only stayed long enough for me to believe I was seeing a hummingbird and then it was gone.

So a small sighting with a large benefit, but it made my day. Hope you see something just as marvelous that puts a smile on your face.

Tuesday, May 24, 2011

Day Brightner

The one thing I never think to do when I am feeling unwell but seems to be a great mood booster, is listen to music. A couple months ago I saw Adelle's new video and I was hooked. I have since put her in my Pandora Stations and am serenaded with her and others similar. Here is the one that really lifts my day. It has to do with the piano, drum beat and of course her fabulous voice.

I hope you enjoy her as well.

Sunday, May 22, 2011

My own party tonight

Tonight is pity party night. After a day of not being able to breathe, a stomach the feels like someone piped a line of air directly to my gut to inflate it to that size of a beach ball, still struggling with eating, a rotten disgusting cough, a green tube that follows me from room to room only to get caught and make me retrace my steps, and most importantly rapid swing of emotion.

This roller coaster I am on is beginning to make me hate roller coasters. I spend my day with bodily fluids, checking them, calculating them, and waiting for them to change. I spend all day waiting for my "lung butter" to clear up, or make sure my input of water is in cahoots with my output, ie my kidneys are working. And the other part I will remain mum about because the just crosses to gross.

I am pitying myself where I am. I hate doing that. I hope that you can all spend your day appreciating those things you don't even question, like a sneeze or like what you bring up when you cough or do you care and should you care what it looks like.

I writhe in misery in one chair and  yet my body does not want to sit. I stand and I want to sit. I am in some sort of purgatory, no up nor down, or left or right that can move out of this stupid entrapment of how I feel. Every time I have a good four hours I get excited only for my body to begin fevering again and shutting me down one joint at a time. Why fevers effect my joints I don't quite know, but it is irritating.

I know there is a rainbow somewhere with my name on it, I know there is the end to this damn roller coaster but some days it gets harder to hold on and wait till it comes to a halt and you hit your head on the cushioned headrest before the pneumatic release of the bar that keeps you secure, hisses.

I am just fed up with myself and one can't remove them self from the situation. It isn't like being on a date from hell and just getting up from leaving. Nope, it's like living with the most depressing, uninspired, frustrated person ever and realizing that person is me. Me can't run away from me.

Until I feel better I think my posts might be a little unhappy. Just a warning. Proceed further readings with caution.

Friday, May 20, 2011

Blue Skies

No blue skies today. But inside the clouds are clearing. The excruciating pain I experienced earlier in the week is all but gone. In it's wake it has left me with the fullest cough, which coughing crap out is good it just takes a lot of energy. One of the hard parts is getting back to eating all those calories. I think all the weight (like 2) pounds I gained I lost with being sick, but I sure tried to eat fat small thing when I did eat. It's really hard to eat when you end up coughing afterwards and spend the next 30+ minutes trying to keep the food from revisitng. So far today my hot chocolate has stayed put. Of  course I look at the clock and realize it is nearly 11 am and I have only devoured about 200 hundred calories. I got a long way to go today.

Tonight my sister and niece are coming. It is the weekend we scheduled that I would get to spend time with Josie. I wish I felt better or was more exciting for her. Now this is the girl that helped me make it up onto the quarry at Quarry Hill this past fall, by finding me a walking stick and an assured arm around my waist the whole way and she was only 10 at the time, and before I had oxygen. But my sister assures me that Josie and I could just sit and stare at each other and we would have a great time. I hope I can offer a little more than that, but it is good to know she just loves being with me, and of course I her. Just that beautiful face makes me smile from ear to ear.

Today I have a link that some of my regulars might enjoy, the story of a 52 year old who is 13 years post transplant.
Hope it works, if not let me know.

Hope your weekends are full of joy and blue skies wherever you are, real or figurative.

Wednesday, May 18, 2011

On breath at a time

I found myself having an x-ray again today. I have been to the clinic a lot lately, I suppose I should just get used to it. My stupid head cold has traveled it's kind self into my lungs and today gave me such pain, I was for sure it was a collapsed lung. Luckily, it was not. Instead I have a lung pulling on my diaphragm due to all the mucus trapped in my lower lobes. Exciting, eh? Problem is I just need get it out and frankly that isn't always easy.

I hate being in pain, it effects the whole body when one area is under attack. Tensing up in order to not feel the pain in one spot causes further pain in another. Why is that my pain always related to coughing or breathing - oh yeah I have CF. Duh. I am drained today, nothing more I can give, the couch and various soft objects to sit on are my only friend. I do not look forward to the morning and the first few minutes to hours of my day, it is an endless cycle of frustration.

I used to be a morning person and I am sad that I am not any more. I love the smell and sound of the earth as it awakes but now all I awaken to is lying there assessing every inch of my body. From my head down to my lungs, my hip and my legs. Like the tin main oiling all main points, I make sure that all points are working in proper order and when I find one thing out of whack, my whole day is turned upside down.

It is all these little things that I lose along the way that I hope I will regain, at least to some reasonable amount, after transplant. I would love to wake up, do my body assessment and say, gonna be a good day. Get up and get the day going. I realize this could be a long way off but I think it is a good goal to hope for.

Some days I wonder if I am a baby, like does my amount of hurt really qualify as that painful. The clinic has pain scales and I have never chosen  a 10. I hope I never do :-) I always figure there is more room for pain. And yet I am the one whose chest was sewing shut around a chest tube without being numb. Mind over matter, I was desperate at that time and was willing to tolerate anything just to get the job done. But then maybe I am not that strong. I don't think I could ever cut off my own arm to get out of a desperate situation, and then again maybe I would. I guess that is the thing about human nature, one never knows the extent of their willpower until they are forced in a situation that leaves no choice.

Have I ever thought about giving up on this whole journey, I would be lying if I said no. There are days where I don't know how much more I can take. This day was one of those days. But what exactly can I do about it, other than stop all the things that keep me alive. Frankly I think I am more scared of stopping all of it then dealing with each day as it comes.

I sit on my deck these nice days and think about my life but also absorb the beauty that is around me this day. If I have one clear second of the day when the breeze blows and the trees rustle, the birds sing, it is in that second that I know what life is all about.

Monday, May 16, 2011

Floating on the breeze

I was standing in my backyard yesterday just watching Marco show another piece of wood who the boss is as he has about 35 pieces of various wood laying around the yard and I had a flashback to being a kid. I don't know what triggers these memories, sometimes I think maybe it is the smell in the air. Yesterday was cool, yet warm depending on the location I was standing in the yard and the slight sent of floral wafted through. Seeing as my sinuses are slightly plugged, I don't know if I was smelling lilac or lily of the valley. But in any case in that moment I was transported to the dock on lake George and I was about 12 years old.

Lake George was located just behind where my grandparent's lived for some time in SW Rochester. We, my brother, or dad, or whoever else was visiting at the time, would take a short trek to the lake to fish. We used all sorts of crazy things, corn, bread, hot dogs, to name a few, never really anything from a tackle box other than maybe a couple times. There we multiple places around the lake that had docks. The dock right straight off the walking path where the paddle boat was always tied. I always wanted to go on the paddle boat, but it was someone else's, so I just always wondered what that would be like - seriously always. There was another dock that was a little more secluded around the SW side that we didn't go to very often and then there was the tall dock that you could dangle from and you were higher up in the air. So as a kid I probably thought it was really high, in reality it probably wasn't.. I caught my first Bass from that dock.

As a kids summer lasted forever and to me that lake only exists as a summer memory. I don't remember ever going back by the lake in the winter, ever.  I don't remember waiting for seasons to change like I do now. I do remember vividly being scared to death of dragon flies as they swooped past us and floated over the water. I always thought they were some sort of bee and it took me years to know that they weren't. I also hated taking sunnies of the hook, always getting stuck with their poky, barbed fins. To this day I have to take a deep breath before quickly snapping my hand around a fish. I have though become an admirer of dragon flies.

The real thing that I think of with Lake George, is my grandma. I can still smell her home, always clean and smelled of fresh laundry or just wasted dishes, yes the warm dishwasher steam had a clean smell. I think of how she encouraged us to go fishing, giving us bread to take down there. I remember her even walking down there with me a few times. I suppose I recall all this so much because I spent a lot of time with her. I think about her almost everyday, something triggers a memory of her and I always pause and absorb the moment. I remember what it is like to kiss her cheek and today I begin to feel the same cheek when I kiss my mom. Grandma always a warm embrace and a word of encouragement and always, always love from her.

For a woman who lived with such pain for so long and who dealt with so many bumps in life, she never gave up or stopped trying. She always made everyone a  priority, even if she hurt while doing it. I don't know how she dealt with the pain of arthritis when there were few drugs to help. I know what it's like to push and try but I don't think I have an ounce of the strength she did. I also know that on her lasts days it took all she had to say she was done fighting. I think at some point we learn when to say enough is enough.

I think somehow my grandma floats on the breeze, just like the dragon flies. Maybe that breeze is her saying hi and that she is never far from my heart or memory. Maybe the breeze is just her way of reminding me to just fight a little longer, be stronger just a little longer, silently the cheerleader.

Saturday, May 14, 2011

Po's Wall

I love Kung Fu Panda. Mostly I love Jack Black as Po, he does a fabulous job creating this sweet lovable character with just his voice. Po has no hope of becoming the Dragon Warrior but finds himself the chosen one.

In the beginning of the movie we see Po working so hard to climb the steps to reach the location of the Dragon Warrior selection. Huffing and puffing he makes his way up the stairs, but gets there only to find the doors have been closed and the concrete walls are impenetrable. This is that spot at which I realized I am in the same place that Po is. No, I am not trying to become a Warrior, I am just trying to see over the wall. I have climbed and climbed these stairs of my life and huffed and puffed along the way winded and bedraggled I have reached the wall with little energy to make my way over to see what is on the other side. All I want is to see the other side, to see what wonders lie ahead.
I have spent the last five days fighting a stupid head cold, which is ugly and irritating in itself but I woke up Wednesday and to add insult injury I had the worst lung bleed I have had in the last three or more years. So bad that I panicked and call, who else 'Mom'. Chris was already at work. I had no warning no sense of this happening it just came out of no where, just like when you bend over and a blood nose starts. Same thing. So, I spent my whole darn day at the clinic waiting for CT results.The results, were...nothing new. I had no active bleed, the one in the morning stopped after about five minutes of coughing fits and hadn't returned. That is good news, but I was given strict orders, due to my head cold (from being to close to the kiddos), to keep my distance from my nieces and nephews the most awful thing I can ever imagine doing is not kissing there little necks and so soft, unblemished skin.

Here begins my journey, post transplant life is already starting to work it's way into today's life. Post transplant the doc feels my biggest challenge will be keeping away from the kids. Masks will be the new norm. I guess of all the things I will be sad to give up with the transplant will be loving up the kids. Not touching their skin to my lips sounds like the ultimate punishment. But, yet the reward is that I get to spend many more years with them, and that means a lot.

Transplant is my wall just like the wall that Po has in front of him, he is desperate to get to the other side to enjoy, see, and experience all the festivities with the others. I am desperate to see my life on the other side of the wall, the land of transplant. What will it be like? How will I be different? How will I be the same? How will I view life? Will I ever stop waiting for the next bad thing to happen? The hardest part of life is the not knowing. Once Po reached the other side of the wall he found what he dreamed of. I hope that I will find a wonderful life, one I never dreamed could exist for me but with all the things that make my current life full.


Wednesday, May 11, 2011


I love Minnesota, I think it is a beautiful state and it has a lot to offer. But for crying out loud our weather sucks. We spend all of April cold and rainy and the first part of May, then wham a day of hot and humid.

The longer I live the more I dislike winter. I get cold very easily and can't warm up, going outside just makes me anxious. Too many layers the jacket and then carrying a purse or bag (for oxygen) when I can never seem to find my shoulders to actually hold things on. And with so many layers I can't bend down and I always feel constricted to move. I go out at night just to go shopping or something and I shiver so bad I want to throw up. So, no, winter isn't my favorite season and I wait, wait, wait for warm spring and summer.

It seems though we can't actually have a spring this year, we went from winter into some season that really should have it's own name (miserable maybe). Then a slap in the face of the heat and humidity of a typical MN summer day in the middle of July. I found myself yesterday equally as uncomfortable in yesterdays heat as I do in the middle of -10 degree day in January. I was so hot, I couldn't hardly do anything but sit still, on top of that I woke up with a head cold yesterday and that always makes me feel clammy. So, even though I was looking forward to some heat, I have to say, yesterday was not what I was wanted.

Now, had our air conditioner been hooked up, the day might have turned a little different. But when our furnace went out and was replaced in January, the AC was disconnected. So, on the coldest day in January we lost our heat, and yesterday on the hottest day in May we have no AC. It was 86 in our house and all windows and three fans did their best to keep us cool. The place that gave us respite was the basement, it had to be at least 25 degrees cooler down there. If only there was a bed down there, how nice that would have been.

So, I guess it comes down to no matter what the weather is I will complain. I really just would like 80 with a slight breeze and sunny. Seriously, is that too much to ask for? Oh, wait, it is because this is Minnesota and there really are only two season: frigid cold and humid hot.

Friday, May 6, 2011

Loving Friday

Went back to the chiropractor for my third visit to day, regarding my hip issue. It was a quick appointment but it yielded wonderful results. I did notice when she cracked my back how easily the spine cracked and it just sounds like a stick on a fence, brrrrupp. What an awesome feeling but it wasn't that that excited me as much as my hip popping. She has pulled that left leg each visit and it was tight as can be but today she pulled and this loud POP rang out and I went, 'ahh, did you hear that', I think she must get that everyday from people. I have waited years to feel that relief. Oh, it is like christmas and birthday all rolled into one. Who knew something so simple could make ones day so much better.

Anyway, next week I go for a massage to work out these awful knots in my back - wonder what difference that will make. I can only imagine.

I am off to keep picking up clutter in the house as we have company this weekend for the CF walk. We are already at a record, for us, $2,000+. I am overwhelmed by the generosity and support of people. There are a lot of great people out there, just too bad that all the negative ones get the attention.

Thanks everyone!

Tuesday, May 3, 2011

My crazy Hawaiian vacation

I had the same dream last night that I have had repeatedly over the last three or four years. I don't know what triggers it, and even though the story is the same basically, I am in a different place. I have this dream that I am either trying to fly to Hawaii, or I have already made it to Hawaii. But in the case such as last night and tends to occur everytime I have this dream I get there and I realize I have no medicine, no therapy vest, and now no oxygen (that's new). I also couldn't find my luggage on the carousel from the airplane, so now I am in Hawaii with nothing but the clothes on my back. Funny enough I can breath just fine even though I am not wearing oxygen, and yet apparently I supposedly have three oxygen tanks with me but I am not sure how I got them there. Three tanks will only last me about nine hours and I rationalize this in my dream.

I have had this same dream but instead of making it to Hawaii I get stuck at the airport realizing once again I forgot my vest at home. For crying out loud, after having this same dream how many times don't you think I would learn to travel with all my stuff packed?

It really isn't new for me to have dreams over time that are essentially the same each time. I also have the re-occuring house dream. That I started getting when we were trying to sell our house, that one still revisits me, different house, same people. I also use to have the can't find a bathroom dream, where the only bathroom I can find is in front of everyone and the ones that are private are broken or just plain weird. Or the locker dream, of not remembering my combination. I would guess somewhere in all those dreams there is probably a thread, something that ties them all together - or maybe not. Maybe each one of them ties themselves to something different in my life. I always think that I decipher these dreams too easily. Such as the idea that being able to travel with all my 'tag-a-longs' is something I can't comprehend. I will always be tethered to something and will never be free to do things without having a sense of obligation.

Whatever the case maybe, I realize I would like to go back to Hawaii, now 23 years since we last visited. But I really don't want to go if I feel overwhelmed like I do in my dreams, it is to be, pretty, warm, and peaceful. So, who knows maybe someday I will get back there, but without the oxygen, vest, or inhaled paraphernalia. One never knows.

Sunday, May 1, 2011

CF Walk 2011

In case you are a reader and would like to donate to the CF walk, Great Strides 2011, walk for a cure here is the link  Online donation is easy and of course always appreciated!

I also ask if you are a walker, and haven't yet, please go to the Great Strides website and register under my team name.

We are off to a fanstastic fundraising goal this year, thanks to so much generostiy. It doesn't matter if you donate .50 or $50 every cent is important.

Thank you all.