I haven't had days like these in a long time.
Days where my husband and I wake up and have the opportunity to spend the entire day together. Where we can take our time gettin goin in the morning, then head out for breakfast together (our recent breakfast place of choice -- Waffle House). Days where I feel good enough to be up for anything! Days where we head to the beach, a mere fifteen minutes from our apartment, to get in my workout for the day.
You heard me. I'm working out. And I'm doin it on the beach.
To most of you this may not seem something worth making a big deal over. Definitely not something worth dedicating a blog post to. But for me? This is a huge deal.
Pathetic, isn't it?
My life pre-transplant was undoubtably pathetic. As I have mentioned before, getting up to walk to the bathroom was a workout and cause for a ten minute recovery session which consisted of a breathing treatment and suckin on oxygen, occasionally followed up with a thirty minute nap. I am not kidding. Needless to say, getting out and spending the day with Chris wasnt really in the cards.
Our life had been reduced to him working 10-12 hour days, while I laid around either in bed or on the couch strapped to O2, doing 4-6 breathing treatments throughout the day. On the random occasion I might scrape up enough energy to drive the 4 blocks to the grocery store, at which time I was reduced to scootin around on the motorized shopping carts (which, if Im honest WAS sorta fantastic...I can't help it. Feeling good or feeling bad - Im seriously the laziest person on Earth and up until I was forced to, it was always a dream of mine to use those motorized shopping carts at the store....my day had finally come. Yeah...pathetic remember?)
When Chris would get home I would be too exhausted to do much of anything. Which really just upped the pathetic quotient since I hadn't actually DONE any thing all dang day. How I was even remotely tired is beyond me, but I was exhausted 90% of the time, and in tremendous amounts of pain as well. Occasionally we would go out to dinner, but not often. Usually it would just be he and I laying around the living room watching tv, night after night. I was miserable so I can't even say we enjoyed each others company. We were just existing...it was pathetic.
But now - talk about a 180! Im fighting pain and discomfort while my body heals (and Im getting pretty impatient with it to be honest. How long does this crap really need to finish healing anyway, geez!). This past weekend I closed my foot in a car door of all things, so Im walking with a limp which is making other parts of my foot hurt. My sleeping patterns are all over the place thanks to the prednisone Im on for immune suppression/antirejection. And if youve had a chance to catch my latest Facebook posts, youve had the opportunity to see the face explosion I am currently fighting. And by face explosion, I mean the fattness of my face -- thanks again prednisone!
But still, a180! Did you know that its been over ten years since) I was able to walk on the beach? Oh Ive been to the beach plenty of times since then, but actually getting out and WALKING on it? No way. I could (barely) get myself onto the beach, just enough to get to the spot for us to set up, then I would plant myself in a chair under and umbrella for the rest of the time. Only time I even move would be to go to the ocean to cool off. But now, I can walk. Chris and I are enjoying our opportunity to just BE together, and we have taken that opportunity to the beach.
Now dont misunderstand - this isnt a relaxing, afternoon under the sun! Because of the meds I am on, I have to limit my exposure to the sun and canNOT get sunburned. Between the sensitivity it causes to the sun, which could mean I would burn much easier, the immunosuppression increases my chance of developing skin cancer SIGNIFICANTLY. So for now, while my med doss are so high, I hafta be super careful. Sunscreen, hat, fully clothed, etc. Usually we try to go earlier in the AM or later in the afternoon when the sun isnt as strong, or we choose a cloudy or rainy day. But being able to get outside, and WALK and not get tired AT ALL....its incredible. Every time I go out there I just keep repeating "I cant believe I can do this!" Im sure Chris is wishing I could think of something better to talk about, but for now I just cant. Its completely unbelievable to me. And a welcome change to the oh-so-boring walks I usually do on the treadmill.
We have a route we do every time - park at 16th street, then walk the beach all the way to the pier and back. Total distance - 3 miles. Time we take to walk it - 1hour. So I am officially walking a full HOUR at once, never getting winded or tired or anything! And THREE MILES! Last time I traveled on foot 3 miles was during cross country in high school. Craziness...
So between my working out and my weekly appointments at Mayo, I am really doing nothing else other than healing. So, like the title of this post says, life is pretty dull. Well, I guess to you all its dull. And I guess its dull to me in terms of the fact that things are actually going really well, and my life isn't in a complete state of disfunction and pain and misery. Just call me McDonalds, cause Im lovin it! ;)
My last visit to Mayo for PFTs showed they were UP again (whoo hoo!) to a whopping 86% of normal. EIGHTY SIX PERCENT PEOPLE. Less than two months ago I was circling the drain at 21%. That is a 65% increase! And I can feel it all the way to my toes when I breathe. Its incredible. I cant wait for next week for my next PFT. If it is any higher Im gonna freak out. I just can't imagine it being any better, but they keep telling me it will still go up, prolly for another few weeks and then it will level out. If I get to 100%...Im not sure what Im gonna do, but its gonna be drastic and I'll prolly get it on video. Oh and Im gaining weight finally! Today's weight was 135.5, the highest Ive been in years. Havent hit that high since prolly two or three years ago and then it was only 132, and very short lived, as I got sick and dropped 20 pounds almost immediately. Im ten pounds away from high school weight of 145, and Im hoping to put that on muscle-wise...my face is getting PRETTY round and Im sure most of it is the prednisone Im on, but apparently I ate 6000 calories of food yesterday (appetite stimulation is another side effect of the prednisone - finally a side effect I actually dont mind!) soooo the fat face could just be that - FAT. Who knew I was capable of fat? Not me! So stay tuned...fat girl walkin! (and hopefully soon, runnin!)
Here are a few pics for those not following me on FB...you can see the fat-face transformation pretty distinctly...its gettin quite ridiculous really.
Beach day pre-trans with Chris
REALLY enjoyin myself during the hospital stay the week prior to my transplant...had no idea my life would change so dramatically just a few days later!
A few days after being discharged from the hospital post-transplant...you can see the full face beginning to emerge...
Chris and I on the beach before one of my work-out walks...yup its fat face city over here...honestly I look like a chipmunk.
And finally, the latest and greatest. My cheeks have officially surpassed the boundaries of the rest of my head. They have a life of their own. Ridiculous is the only word to describe these things. They could blow at any second.
As my face and body continue to expand and my lung function continues to increase, I'll keep you updated...I'll have to cause if I dont you may not recognize me when I finally see you in person again. Lol!
Much love...
Erin
Days where my husband and I wake up and have the opportunity to spend the entire day together. Where we can take our time gettin goin in the morning, then head out for breakfast together (our recent breakfast place of choice -- Waffle House). Days where I feel good enough to be up for anything! Days where we head to the beach, a mere fifteen minutes from our apartment, to get in my workout for the day.
You heard me. I'm working out. And I'm doin it on the beach.
To most of you this may not seem something worth making a big deal over. Definitely not something worth dedicating a blog post to. But for me? This is a huge deal.
Pathetic, isn't it?
My life pre-transplant was undoubtably pathetic. As I have mentioned before, getting up to walk to the bathroom was a workout and cause for a ten minute recovery session which consisted of a breathing treatment and suckin on oxygen, occasionally followed up with a thirty minute nap. I am not kidding. Needless to say, getting out and spending the day with Chris wasnt really in the cards.
Our life had been reduced to him working 10-12 hour days, while I laid around either in bed or on the couch strapped to O2, doing 4-6 breathing treatments throughout the day. On the random occasion I might scrape up enough energy to drive the 4 blocks to the grocery store, at which time I was reduced to scootin around on the motorized shopping carts (which, if Im honest WAS sorta fantastic...I can't help it. Feeling good or feeling bad - Im seriously the laziest person on Earth and up until I was forced to, it was always a dream of mine to use those motorized shopping carts at the store....my day had finally come. Yeah...pathetic remember?)
When Chris would get home I would be too exhausted to do much of anything. Which really just upped the pathetic quotient since I hadn't actually DONE any thing all dang day. How I was even remotely tired is beyond me, but I was exhausted 90% of the time, and in tremendous amounts of pain as well. Occasionally we would go out to dinner, but not often. Usually it would just be he and I laying around the living room watching tv, night after night. I was miserable so I can't even say we enjoyed each others company. We were just existing...it was pathetic.
But now - talk about a 180! Im fighting pain and discomfort while my body heals (and Im getting pretty impatient with it to be honest. How long does this crap really need to finish healing anyway, geez!). This past weekend I closed my foot in a car door of all things, so Im walking with a limp which is making other parts of my foot hurt. My sleeping patterns are all over the place thanks to the prednisone Im on for immune suppression/antirejection. And if youve had a chance to catch my latest Facebook posts, youve had the opportunity to see the face explosion I am currently fighting. And by face explosion, I mean the fattness of my face -- thanks again prednisone!
But still, a180! Did you know that its been over ten years since) I was able to walk on the beach? Oh Ive been to the beach plenty of times since then, but actually getting out and WALKING on it? No way. I could (barely) get myself onto the beach, just enough to get to the spot for us to set up, then I would plant myself in a chair under and umbrella for the rest of the time. Only time I even move would be to go to the ocean to cool off. But now, I can walk. Chris and I are enjoying our opportunity to just BE together, and we have taken that opportunity to the beach.
Now dont misunderstand - this isnt a relaxing, afternoon under the sun! Because of the meds I am on, I have to limit my exposure to the sun and canNOT get sunburned. Between the sensitivity it causes to the sun, which could mean I would burn much easier, the immunosuppression increases my chance of developing skin cancer SIGNIFICANTLY. So for now, while my med doss are so high, I hafta be super careful. Sunscreen, hat, fully clothed, etc. Usually we try to go earlier in the AM or later in the afternoon when the sun isnt as strong, or we choose a cloudy or rainy day. But being able to get outside, and WALK and not get tired AT ALL....its incredible. Every time I go out there I just keep repeating "I cant believe I can do this!" Im sure Chris is wishing I could think of something better to talk about, but for now I just cant. Its completely unbelievable to me. And a welcome change to the oh-so-boring walks I usually do on the treadmill.
We have a route we do every time - park at 16th street, then walk the beach all the way to the pier and back. Total distance - 3 miles. Time we take to walk it - 1hour. So I am officially walking a full HOUR at once, never getting winded or tired or anything! And THREE MILES! Last time I traveled on foot 3 miles was during cross country in high school. Craziness...
So between my working out and my weekly appointments at Mayo, I am really doing nothing else other than healing. So, like the title of this post says, life is pretty dull. Well, I guess to you all its dull. And I guess its dull to me in terms of the fact that things are actually going really well, and my life isn't in a complete state of disfunction and pain and misery. Just call me McDonalds, cause Im lovin it! ;)
My last visit to Mayo for PFTs showed they were UP again (whoo hoo!) to a whopping 86% of normal. EIGHTY SIX PERCENT PEOPLE. Less than two months ago I was circling the drain at 21%. That is a 65% increase! And I can feel it all the way to my toes when I breathe. Its incredible. I cant wait for next week for my next PFT. If it is any higher Im gonna freak out. I just can't imagine it being any better, but they keep telling me it will still go up, prolly for another few weeks and then it will level out. If I get to 100%...Im not sure what Im gonna do, but its gonna be drastic and I'll prolly get it on video. Oh and Im gaining weight finally! Today's weight was 135.5, the highest Ive been in years. Havent hit that high since prolly two or three years ago and then it was only 132, and very short lived, as I got sick and dropped 20 pounds almost immediately. Im ten pounds away from high school weight of 145, and Im hoping to put that on muscle-wise...my face is getting PRETTY round and Im sure most of it is the prednisone Im on, but apparently I ate 6000 calories of food yesterday (appetite stimulation is another side effect of the prednisone - finally a side effect I actually dont mind!) soooo the fat face could just be that - FAT. Who knew I was capable of fat? Not me! So stay tuned...fat girl walkin! (and hopefully soon, runnin!)
Here are a few pics for those not following me on FB...you can see the fat-face transformation pretty distinctly...its gettin quite ridiculous really.
Beach day pre-trans with Chris
REALLY enjoyin myself during the hospital stay the week prior to my transplant...had no idea my life would change so dramatically just a few days later!
A few days after being discharged from the hospital post-transplant...you can see the full face beginning to emerge...
Chris and I on the beach before one of my work-out walks...yup its fat face city over here...honestly I look like a chipmunk.
And finally, the latest and greatest. My cheeks have officially surpassed the boundaries of the rest of my head. They have a life of their own. Ridiculous is the only word to describe these things. They could blow at any second.
As my face and body continue to expand and my lung function continues to increase, I'll keep you updated...I'll have to cause if I dont you may not recognize me when I finally see you in person again. Lol!
Much love...
Erin
I can't wait to see you! I think you look beautiful. You can't fake that sort of happiness, it seems too ooze out of you!
ReplyDeleteYou are beautiful and always have been! We all love you.
ReplyDelete