Oh, the month of May

It was a year ago this week that the nightmare started of what would become my new reality. It was the Tuesday after the CF walk of 2011 that I came down with a head cold, who knows where it came from and why I had to pick it up but it did and that is how life rolls.

It was the head cold from hell that three weeks later put me in the hospital and, which come June 1st I will likely be blogging about that day as well - it's been an interesting year.

In any case, as of late I have been spending some time on some old internet stomping grounds, I guess you could say, the cystic fibrosis forums. I used to spend a lot of time reading through questions, posting questions, learning about all things related to CF and others who have CF. It's been a long time since I have been on there, I don't think I visited it but once while was on the vent and not since then. But I realized something strange or different - I have a whole different perspective now of what having CF meant/s, and how drastically life is different, and yet in someways the transition was way easier than I would have expected pre transplant.

I guess I didn't realize how much CF lungs are vial, filthy creatures. Not their fault, genetics made them that way and yes they gave me the 34 years I have had - so I don't hate them as much as I see how difficult they made my life. I see videos of other CFers, hear them talk, watch them cough, try to catch there breathe and think, wow, that was me. How did I do that and how difficult it is to watch that, how painful and utterly heartbreaking. I feel such compassion for those who continue to fight this battle daily, those you find themselves in the hospital once again to try to get some sort of comfort and care so they can go back to living a 'regular' life, even though their regular is much different than everyone else's.

It's really little things that make the difference, just having a good nights sleep, or being able to eat a meal and not feel stuffed and breathless. It's walking up stairs without having to drag a plastic tube behind that gives you the only comfort when the stairs feel like trying to reach the mountain peek. Those are things that we just accept and deal with having CF and lungs that degenerate in a fashion that we adjust and don't realize that we are heading down a slippery slope. No one wants to have a transplant, and no one wants to admit that their lungs are failing, because even though these CF lungs are going to give out they somehow make us think that they are giving us a better chance at living a life then having someone else's lungs inside of us because God only knows there is no guarantee, transplant is fickle. But the true reality doesn't hit until the deed is done, transplant is over and it has become your new life.

I have been on this roller coaster, I have had many ups and downs with these lungs and still some days I am caught off guard when my brain processes the fact that I am breathing because someone else once breathed with these lungs inside of me. It is a mental exercise is acceptance and emotion. Whatever time I am given, whatever direction this all goes these last few months have been better months than the last five or more years of my life. I may have some pain, but it is not chronic and daily pulling me down mentally and physically. I may not breath perfectly but I breath the best I have in over 10 years, and I am not breathing through muck. I am enjoying doing things that I can do and not sacrificing myself for doing them.

Daily I feel the strength returning, weekly I find something new and bewildering about this new world I am living in. Monthly I look back to think where I have come and as my brother said, what transpired six months to a year ago seems like a decade ago. How utterly touched and honored that I am still here on this day to walk the earth. Whatever capacity, in however I chose to spend my day I have been given the greatest of gifts. Until your life is nearly snatched from you is it hard to truly grasp how special each and every day is, and how trivial some things in life really are.

This day is always the only day we have, and even though I have my days where I forget this blessing and let the unimportant things in life bother me, we need to realize that it is a special day no matter what we are doing, working or playing. This day will be the best day of our life, everyday has that chance.

I pray for all the CFers out there tonight struggling to breath, fighting another day to beat the big bad beast that is CF. I may no longer fight the nasty lungs but my heart aches for others and prays that one day CF will no longer be the vial creature that it has a tendency to become.

Tour de Elton Hills

That is a misleading title post but I needed something different. In reality my bike ride today was about an eight to ten block ride, which is way better than the one block ride I took the day I got my bike. It was a gorgeous day today and I spent all of it inside until about an hour ago. Why you ask, would one waste a day like today being inside after such a nasty weekend? That my friends is a good question. Mostly because I had things I wanted to do inside, and since I am really not to enjoy the sun too much for fear of you know cancer, I opted to wait until this evening to take my bike ride. Which in the end was quite nice, it reminded me a lot of growing up rural as a kid and going for bike rides in the evening with our dad. I remember how we would go up and down the hills and always in the bottom of the one hill, just below below Emrick's driveway , the dip would have that cool evening air. I can still feel it when I think about it.

In those days we didn't wear helmets, and considering we were always riding on gravel or around the yard we never even gave such a thought to anything like a helmet, and mostly because there wasn't such thing when we were kids. We just rode to enjoy and didn't worry about getting injured. So, tonight as I rode my bike, again sans helmet, I thought how crazy I probably look to the world riding without my safety net. I will get a helmet and after having had one on this weekend while riding the Segway, I decided I don't actually hate having one on.

In reference to the Segway, the CF walk on saturday was good as usual. I don't have final numbers for what the Rochester site raised, but I know Chris and I raised over $1,600 thanks to all our great family and friends. We had a little smaller turnout as far as walkers this year, but the weather wasn't exactly inviting. It was cloudy, chilly, and damp.

To prove that I actually wore a helmet and rode the Segway here is a picture. And no I didn't run anyone over, however I did try a couple times, those things really need horns. Thankfully I learned quickly how to stop and avoid hurting the innocent.

CF Walk 2012-Segway (Me and Chris)

And the Winner is!

Thank you to all who took part in donating to the CF walk and a chance on winning the painting. As promised the winner was randomly selected and the winner of the painting is, Michael A. Siebenaler.

I am so thankful for all of you that participated. You helped me raise more money than my goal. We raised over $1,000 in this last month because of all of you.

May God Bless you all!

-Sarah

Being Me

Today I looked down at my feet and smiled. Not because I haven't seen my feet in awhile, but because I painted my toe nails and doing so just makes things seem so much better. Just like a few weeks ago when I first painted my fingernails and got all excited, this is the same thing - yet different.

As I looked down at my little pink toesies, I felt this over whelming sense of me. What does that mean exactly? It means that somewhere along the way the last few years the Sarah I knew got lost, the Sarah that had fun and did fun things, and painted her nails, fingers or toes, purples, pinks and shimmery colors got lost in all the crap of feeling like crap and trying to live each day just to make it through. I think I got lost not only in being sick all the time but in trying to also be the good wife and do all the daily things wives (of the 1950's) do.

For some reason when I looked at my shiny toes I had a flash of the last seven years. I recalled how I used to go for walks in the morning before work when we lived in the town home and how absolutely shitty I felt walking and how my chest would hurt and I would have so much pain, but it became the norm. It was an awful norm and to think that is seven years ago. Because I thought I was 'well' then and in reality I was not. I guess after I had a part of my lung removed back in 2004 things changed. I was so focused on wanting to get the wedding over so Chris and I could start 'living'. I guess the first year was okay, my health stayed fairly stable but that second year as we moved to the new house all hell seemed to break lose and I was sick a lot.

I guess until one looks back on things they don't realize what exactly they have done, changes made to make my life 'easier'. Like planning trips up the stairs with laundry, or planning how many trips to the basement, or not going somewhere with friends or doing something late at night because all of it will in some way cause you pain, discomfort or just plain ill feeling. I don't know how many times I bowed out of doing something because of how I felt, it wasn't always because I didn't WANT to do something it was that I didn't want to face the consequences of doing something that would in the end make me feel like crap when I already felt like crap.

So, little by little my world changed and morphed into something that was no longer me. I disappeared a little everyday and I didn't know it, but now I do and I refuse to let my life be ruled like that completely again. Not that my health won't dictate me but I will do my best to do the things that bring me the joy I once had.

Today I found out my bronch showed no Acute rejection, meaning A0, but it did find Chronic or C1 rejection. What exactly does that mean? It might just be because of the current infection, that's what the doc is thinking, because some result say I have healthy lung tissue. And I refuse to Google it. So for now I am putting the C1 on the back burner until Monday when I go back in. For now C1 is nothing more then a combination platter at Hunan Garden that is part of the Happy Family menu. I refuse to let it ruin my weekend as I have a lot planned.

I have felt more like the old Sarah in the last week then I have in years and I rather kind of like it. Now if I could just break out of my shell and buy a polish color that is something other than pink or purple.

Simple Seven, Simply Retro!

I have a new friend! She is going to help improve my overall health, take me on journeys to magical places, and mostly put a smile on my face every time I see her.

Henrietta or Henri for short!

I am so excited to get in shape enough to actually ride her further than around the block and actually up the hill. I took her for an inaugural spin yesterday, glad I decided to just try the block rather than a discovery trip through the neighborhood. I apparently thought that even though I can walk 3 mph on the treadmill and run for five minutes that somehow I would have the thigh muscle to push up  a hill, I was very much wrong.

But all things take time, right? Guess I will just have to go around the block everyday, or many times a day and when I can finally get up the hill I will move on to two blocks and then three and then one day I will find myself on the other side of town. I will be so excited I made it that far only to realize I have to go back the same distance as I came because in my excitement I will have forgotten that part!

I have also been informed by my sister and niece I need a helmet, wrist guards, knee pads and likely bubble wrap to keep me safe. At this rate I think I need to add training wheels, you know, just to make sure I don't topple sideways.

Thursday is my six month bronchoscopy, I am really trying to be hopeful and positive. It isn't alway easy to do when there have been so many bumps in this road but I keep telling myself a positive attitude is needed here, if I think negative, negative happens. So only hopeful thoughts.

I will keep you posted on Henrietta's and my journeys through the neighborhood and some day around Rochester.

Six Months

Six months ago today I went into surgery to receive new lungs. Can you believe it has been six months already! I remember just about three or four weeks after transplant sitting at my parents house wondering how on earth I was going to make it through. I was sore, underweight, tired and scared to death of these new lungs inside of me. Will I ever feel normal? On top of that will I ever know a life without pain and will these legs and lungs of mine ever work again, happily.

Fast forward to today. Where am I and where do all things stand? Let's recap, I have had three rejections, an abscess, and now a return infection of the lovely Pseudomonas and Aspergillus. That's just the crap stuff that happened. Now on to the good stuff. I have traveled to the Twin Cities more times in the last six months then I did in the last two years. I got to see my nephew play hockey for the first time in two years. I went to my sisters house this past weekend for the first time since Oct. 2010. I spent the whole day with my husband in the cities a few weeks ago, eating at a restaurant for the first time in nine months and traveling a whole day without a care or thought. I have painted more in the last six months than I have the previous nine years since I left college. I painted my fingernails, I ran five minutes, and now I am walking on the treadmill at 3 mph daily. I have read more books then in the whole Harry Potter series since transplant and finally walked around my neighborhood. Whew, I am sure there are more things I have done but right now I can't think of them.

My pain is still a daily thing, my chest feels like it isn't part of me most days. I still have issues eating with bloating and a sense of food just sitting there at the end of the day. But I still love food and I go at it like it's going out of style. 

There are many days lately that I am suddenly overcome by the realization that I have someone else's lungs inside of me. People say they are mine now, and to some extent yes they are but there is no denying that I have a part of another being in me. It also makes me nervous when I realize how delicate this whole thing is. I try not to dwell on it. I kind of say a little thank you and take hold of the moment and the day, that I am still here for whatever reason and to cherish this very moment. Then I move on, because dwelling on it will only make me sad for knowing it can all be gone too quick but yet how thankful I am for being given this extra time. Funny though the more days you are given the harder it is to think about losing it all again. But I won't travel that road today. Today I will rejoice that I have had a good day and I got to go to Hobby Lobby and Home Depot with my dad, lunch with both my parents, and finish assembling our new bed with my husband. I can only be thankful.

Happy six months lungs, and thanks for my donor for this celebrated day!

Listen Closely

I have been purposely not blogging for a few days to keep my Donate and Win! post at the top. I will likely post it again to keep it up there, but if you are looking for that post click here this will take you to the site about rules and regs regarding donating and winning the painting. Or if you already know the rules and just want to get to the donation part, click on the Great Strides link to your left.

With that said, I shall move on. This has been a week of many things, not least of which is a lot of thinking and reflecting. Self reflection is great but it can also be difficult. I have had thoughts this week about where my life is at and where it may be going. I know I have talked about this times before but lately it just seems different. 

Today was the funeral for SM, the young woman with CF who passed while waiting for her miracle. It isn't hard to sit here and think that today could have been me just months ago as I withered away on the ventilator waiting and hoping that these lungs would come. I was lucky enough to receive that gift, but as I sat there today in the beautiful church listening to the music, and the homily and watching the family grieve their loved one, I wondered who was luckier, me or SM. I realize we are both lucky and for some reason, which who knows if we will ever know, God has given us this path. For SM she is now standing and breathing freely, no tubes, no machines, no holes in her body, and free from the confines of this earth and it's limits on making her feel better. She is standing with her brother, free. 

I on the other hand am breathing much more freely than six months or two years ago but I don't know what it is that I am suppose to be doing at this point, other than I feel some obligation, not a negative obligation mind you, but a duty or calling to make something of this life I am given for all those who have suffered with CF and lost the battle. I have been given the chance to live another day to do whatever it is that I please, within the confines of new lungs, rules and restrictions dictated to me by the medical community. Which means mostly I can do whatever except eat pomegranates, dirty fruit and veggies, not sit in hot tubs ever again, avoid sick people and a few other things that I probably wouldn't do anyway. 

I am trying to figure out what my role is as an employee, a wife, a designer, and a transplantee. How does one feel so lost sometimes when they have been given so much and have so very much to be thankful for? I sometimes look at people when I am out and about, or when I am on Facebook and see people's posts about the cool things, or the mundane things they do and think how strange it is that all we do here someday means absolutely nothing when we are gone. Yet we are set here to do something with our life, learn, teach, explore, help, all of the above or none if we so choose but life is something and about something. We are here for such a short period of time and yet need to be able to make something of what we are given.

I guess that's why I think SM is sometimes lucky, she is free of these grips we inflict on ourselves, in our lives here on earth. We make a big deal out of unimportant things and not acknowledge the small things that mean the most. Do I wish I would wake up and just know what it is I am suppose to do, you bet. But then there are days like today when a 10 year old boy exhales in surprise at his birthday gift that I painted for him.  I couldn't have been happier that he was so tickled with his gift. And maybe that's my gift to the world, one smiling face at a time, giving the gift of myself to others. God will provide, that being said, maybe his provisions are through love and his tool is me. Maybe what I don't think I know, I already do, maybe what I am searching for has already been found.  Maybe it isn't a neon sign I am looking for but rather a whisper on a breeze. All I can do for today, is listen.

Rest in Peace Stacey!