Expect The Unexpected

Submitted by Laura on Fri, 02/10/2012 - 12:43am

So, if you have been reading my prior blogs, you've probably noticed that I have not been feeling that good the past 2 months.  I was getting concerned, so I bumped up my doctor's appointment from March to today.  I was expecting to come out of the appointment today with lower PFT's (lung function) and the doctor recommending a hospital stay for a 'tune up'.

So, I headed in with Paul to do my PFT's.  The look in Paul's eye when I finished told me that it was not good news, but then he said, "They're better than last time".  I said, "You're shitting me?!?!?"   See, if my PFT's are better, it means my LAS score will go DOWN, meaning a LONGER wait for transplant, because I'm HEALTHIER.  I know, I know, this IS a blessing, but it's also a curse.  Now I have to live in this world where my life is treatments, working out, sleeping, eating and feeling like CRAP.  I'm not any closer to new lungs and being able to breathe.

I should be glad, though, because it's always better to keep your OWN lungs for as long as possible, since lung transplant is risky and unknown.  It's just funny that I've been feeling so crappy, but all my tests say I'm healthier.  What the hell?  This disease is CONFUSING!

So, I met with the doctor after my PFT and his advice is to stay OUT of the hospital since I'm not bringing up any more sputum than normal and my numbers are up.  In his experience, end stage lung disease means one day you're up and the next you're down with no rhyme or reason. He suggests to keep plugging along, being 110% compliant, exercising and just staying positive like I have been.  I think he's proud that I've remained stable this whole past year.

So, okay, fine, I'll deal with whatever you've got for me, Life.  Bring it on.

On a lighter note, the doctor shared with me that he had a brief in-patient hospital stay a few weeks ago and he has a whole NEW appreciation for what his patients go through!  His list included, but not limited to: TERRIBLE food, constant beeping machines, waiting 10 minutes for someone to turn off the beeping, being woken up at 3 am for a blood pressure reading, and lack of assistance when trying to use the facilities (staff acting like they're doing him a big favor by helping him to the bathroom).   He's always been super caring, but I'm secretly glad to see he has gotten some real perspective to help him relate even more with his patients.   I introduced the concept of starting a CF Advisory Board at the clinic, and I think this experience has made him even more open to it!  I will be sad when I have my transplant and I no longer need to see this doctor....I really like him!  We were chatting for 45 minutes today.  I don't feel like seeing this doctor is a chore, I love going! 

If Only It Were That Easy.....

Submitted by Laura on Sat, 01/28/2012 - 6:33pm

Two nights ago, I had a dream.  In this dream, I was in the hospital waking up from my transplant surgery.  I opened my eyes and immediately took the biggest breath of my life and it felt great.  So great, in fact, that I threw back the covers, hopped out of bed and danced a little jig. Then, I woke up.

If only transplants were that easy....what the dream failed to showcase is the abundance of tubes I am sure I will have coming out of my chest, a breathing tube, a massive incision, and a very weak Laura.  However, I think my dream proved a very important point...I simply cannot focus on those things that aren't so pleasant.  I have to think positive and keep reaching for the day when I get to dance my jig.  

Speaking of dancing, this is one of the activities I miss so much. I cannot wait to get healthy - I think I will join a fitness dance class.  These are the days I wish I were 22 again, so it would be appropriate to go to night clubs to boogie down. It's a good thing my group of friends, whom I celebrate most holidays with, don't mind a good 'house dance party'.  It's hard for me to watch dancing on TV.  Sometimes I get really overwhelmed and I cry because I want to be able to dance to a song that I'm really enjoying or even just dance to make Joe laugh...I miss those days. I miss my old self.  She's still in there, just taking a 'breather'....

Rough Month

Submitted by Laura on Thu, 01/12/2012 - 6:26pm

In an effort to keep my sanity, I am going to vent my frustrations I've had over this past month. Warning: this is just a spill of all my thoughts as I'm typing.  What you read may not be pretty! Maybe laying it all out will get me out of this funk!

The week before Christmas, I started getting a cough and more short of breath than usual.  This has started to occur during "that time of the month", so I figured when that was over, my cough would subside (as usual).  I was really worn out the week before and after Christmas - I didn't shop for gifts, I didn't wrap, I didn't cook, I didn't bake - this is pretty unheard of for me!  I didn't go to rehab for a whole week and the next week, I only went once. I felt like my time with Joe was wasted (he took off work the week after Xmas), because all I could do was lie around with cramps, no breath and sulk. So, that didn't help my mood, feeling like I just simply cannot do anything. Since then, I've barely made it to rehab once a week.  I've been pretty down on myself for not sticking to my rehab these last 4 weeks.

My cough never really went away and so I've been on Cipro (antibiotic) for 2 weeks, hoping that it would clear my cough and bring me to baseline.  Tomorrow is my last pill, and I am feeling a little better, but I have to see if I continue to be better or if my cough returns.  I've been extremely exhausted, spending a lot of my time sleeping or lying around.  I can't seem to get any energy or motivation.  Time just flies during the day - I have all these things I want to do, but as soon as my body is ready to do them, the day is over.  Another day lost where I didn't work out, or I didn't eat properly, etc.

Taking care of myself is just getting really exhausting.  My chest, lungs, back and neck hurt all the time.  It's easier if I just don't move - which obviously isn't good for me).  I'm totally stuck in a rut and need something to turn my attitude around quickly.  Even though I am feeling like crap, my LAS score went down ever so slightly (indicating I'm 'healthier'), which was just the final straw after the month I've had.  My breakdown ensued a few nights ago - crying, screaming, throwing myself into bed, thrashing, then calming down and hugging my dogs.  Then, I changed the bed sheets to prove to myself I wasn't useless (took 30 min., but I did it). Sometimes you just need to let it out.  I need a punching bag (although I probably don't have the energy or breath to even punch).

I'm lost in a fog right now, just going through the motions.  I've managed to cook dinner twice so far this week (plan to again tonight) and do laundry. I really need to put the Xmas decorations away. 

It's getting harder to be with people and make plans. I never know if I can commit to leaving the house. I usually can't be ready to go anywhere till 3 pm.  My brain has been less able to handle conversation.  I don't know what it is - it's hard to explain - but my tolerance for things out of my immediate control - I don't want to hear about (with some exceptions - all health and life issues welcome ).  I hate to be in my own little bubble, but there's only certain things that I am capable of letting in right now.  I don't want to be that person that thinks, "that's your biggest problem right now? Your TV doesn't work? You are complaining to me about that?", because I truly understand that everyone has something they're dealing with, no matter how big or small, and if it is important to them, it IS important to me.  I don't want to lose that quality in me, but I feel like that quality has taken a temporary hiatus for now.  Don't get me wrong, I don't want people to stop calling me, stop telling me what is going on in their lives (b/c there's nothing going on here!!), but if I don't absorb all of it, just know it's not you. My ears are open for good gossip and good news though!  If anyone is wondering what they can do for me, I would say making plans to come by my house for a couple hours, bring a meal and entertain me would be a nice gesture (call first, but after 12 noon - Tue and Thurs/weekends are generally better days ).

This blog has totally been a rant and a spill out of all my thoughts today. Hopefully by getting it all out there, I can start tomorrow on the up-swing and get out of this rut.  I know it is normal to feel this way sometimes, and I think I have allowed myself enough self-pity for now.  I'm going to give myself a good slap in the face and move on with my day. At least there is a new Big Bang on tonight - something to look forward to.   As a final note, I love all of my friends and family and will always care about what is going on in your lives - I love to care - please don't take this post as a reason not to call me or visit me.  Sometimes you just have bad days, ya know?

XO

Crazy Month!

Submitted by Laura on Fri, 12/16/2011 - 5:38pm

It has been a crazy 2 months! I don't even know what I've been doing, but I feel like I've had no time to unwind and relax.  Maybe it was all of the preparations for last weekend's fundraising events or preparing for the holidays, but it's been a whirlwind.  I can't believe it's less than 10 days until Christmas and 3 days until I turn 31!

One thing I learned this weekend is you never know who you will meet and where you will find kindness.  I met a lot of wonderful and giving people this weekend who opened their hearts to my story and didn't hesitate donating to my fund without even really knowing ME.  I know how generous this is considering the hard times a lot of us are experiencing.  I also made some new friends this weekend, just by them swinging by the raffle or stopping to talk to me in the mall.  I was so happy to spend time with my friends this weekend, too - even though we were 'working' - it truly didn't feel like work and I had a lot of fun with everyone.  I truly feel blessed for all of the love around me!

I even got to take in a show this weekend at the Marriott - "White Christmas" - which I've never actually seen on TV before.  Crazy, I know.  One thing I learned from the play that I've been trying to do since Sunday is this: Count my blessings instead of sheep, and I fall asleep counting my blessings.  It has been working wonders on getting to sleep faster and having a more peaceful night's sleep!  Thanks, Bob and Betty!

So, what will I be filling the next 10 days with? Writing cards, a holiday party, a doctor's appointment, cooking and possibly some baking!  I'm not hosting any parties this year, but I am sure I will be summoned to make something for Christmas Eve and Christmas Day.  Even if I'm not summoned - I will be sure to make my favorite Christmas cookie - Pepparkakar!  Yummy!

Merry Christmas to everyone!   Laura xo

Today Was a Good Day

Submitted by Laura on Thu, 12/01/2011 - 12:57am

Today was a great day.  I spent some time doing things I wanted to do - which I haven't done in a long time, since I've been so tied to my "normal" schedule.  I started out by getting a massage, and wow, did I need one!  

After that, I visited my friend, Sara, and her new baby, Nolan.  He is such a precious gift and a cuddle-bug.  I was happy to spend some one on one time with Sara, because we are usually surrounded by our "group" of friends when we see each other, that it was nice to connect today.

Lastly, Joe and I visited Bill's Pizza and Pub in Mundelein to check out the paper icon sale they are doing for Lungs for Laura (buy a 'sun' for $1), eat some awesome pizza and meet the staff and patrons who have been working so hard to sell the icons.  I felt like an episode of Cheers where everybody knew my name (ok, I'm cheezy).  In all seriousness, I felt really blessed meeting the people I don't even know who are supporting me.  It filled my heart with joy.  I took a picture with some of the staff and patron Steve

Useless

Submitted by Laura on Tue, 11/15/2011 - 5:02pm

I will open this entry by saying that I understand it's my job now to take care of myself and stay as strong as possible before transplant.  Just because I understand that, doesn't mean my mind is fully accepting.  The interesting thing about spending so much time taking care of myself, is that I start to feel very useless outside of the little "me" bubble.  I keep searching my mind for meaningful things I can do during my 'spare time', from my home, that would help the community.  I keep coming up empty, and it's frustrating!  One of the most frustrating things is I never know how I will feel physically day to day, so to commit to deadlines, going places, etc. for charity work is out of the question at this time.

When I don't feel my capacity is fully utilized, I tend to get crabby because I just feel stuck in a rut.  When you go from working 40+ hours a week and having a focus, to pretty much hanging around home, a project is needed!  Things I have considered are looking into schooling options for social work/patient advocacy, starting an organization to help fill a missing gap in CF care, etc.  Right now, though, my mind is just a blur. I don't ever have a solid space of time to sit and research/read what my next steps could be before I'm off running to the next therapy.

After transplant, the world will be my oyster....now I have to figure out what my pearl will be. I hope I find my calling and I hope it involves paying it forward.

Thoughts for Today

Submitted by Laura on Wed, 11/02/2011 - 3:54pm

Wednesday - rehab day!  I am feeling a little better about going to rehab this week now that my horrendous cough seems to be subsiding.  I started a course of oral antibiotics last week in hopes they would help me, so I wouldn't have to go on IV's.  My mom has also been pounding my chest once a day and it has helped me cough up all the mucus that has been causing my cough. Yay!

Last night while we were doing my pounding, at 6:30 pm, the phone rang and the caller ID said "Loyola Medicine"....my heart stopped and I began to sweat.  No medical offices are open past 5 pm usually.....so IS THIS THE CALL???  I answered with a very weak "Hello?" and it was my procurement nurse.  He was just checking in with me and letting me know his last day was Friday, so my care would be transferred to another nurse.  Whew....that was my first 'scare' in getting 'the call'.  He let me know that I am probably #1 or 2 on the list and that really I could get a call any day (depending who is listed higher than me at Univ of Chicago).  Time to pack my hospital bag! =)

Now for something more lighthearted.  Most cystic patients I have met or talked to have a tendency to clear their throats a lot - I don't even hear myself anymore.  Joe finds this awfully handy when we're separated in the store, he just listens for my throat clearing.  So, I wonder, after transplant, will I still clear my throat?  Will I do it not because phlegm is there, but because it has become a subconscious habit?  I really think that I will stop doing it, but who knows.  Joe jokes that it is our mating call so I should not stop.  I think it's time for a new mating call!!!!!

Happy hump day!