CF flipping sucks

While one life, Garran, is being extended wonderfully (he is doing fabulous and last report is he is off the vent and walking around less than 24 hrs after tx!).  And another is on the way out.  Our friend Jenn is on the vent after a severe lung bleed.  It is only a matter of days or hours until we loose her.  We are all so sadden and heartbroken.  It happened so fast.  She has been in the hospital for a few weeks working through some medical issues, and waiting to be listed for a lung transplant.  And now this.  

I feel so distanced, so removed from it.  Like it isn't happening and it is just some bad nightmare.  Talking about it doesn't seem like it is her.  Like it is someone else, or a TV show.  

I don't want her to go but I don't want her to suffer.  

I pray to God that she is not suffering and that her family has the strength to get through this.

We all love you Jenn and are pulling with all our might that a miracle might happen and bring you back to chat with us.

<3

So many prayers needed please!!!!!

7 year old Garran got his call yesterday and was transplanted.  He now has 2 fresh new lungs to breathe!!!!!

Here is his caringbridge site so you can all see what an amazing boy this G-man is!!! 

Please keep him, and his family in your thoughts and prayers so he can continue to do fabulously!!!!

Also, please pray for Officer Chris Jones' family.  I had not blogged about this before.  One of our brave officers here in Middletown was killed Thursday in a traffic accident while he was on duty.  The viewing and funeral are set for Wednesday and Thursday.  He was the first officer for us to loose in the line of duty here in Middletown.  

Some amazing news!

Well I am going to blog about some interesting information I discovered last night.  I went to dinner with my dad and step-mom.  I was able to fill in all the information needed about my family’s colon cancer history.  I was floored at it!  I knew of some of them but was completely in awe of just how many people have had it.  So here is my list, just first name initials.  Keep in mind this is all from my dad’s mom’s side of the family.  The x2 means they had it twice! 

- Dad

- Dad’s mom

- Aunt J (dad’s sister)

- Aunt P (dad’s sister)

- Aunt L (dad’s sister)

- Uncle J x2 (dad’s brother)

- Aunt L (dad’s sister)

- Great Uncle B (dad’s uncle – died from it)

- Great Uncle J (dad’s uncle – died from it)

- Great Uncle J x2 (dad’s uncle)

- Great Grandmom (dad’s Grandmom)

- Great Grand-dad (dad’s grand dad - died from it)

- Cousin D (dad’s cousin died when 14)

What this means is that I really need to consider being tested for the gene and getting a colonoscopy done.

I also found out that my dad’s cousin B had CF!!!!!!!!!!!!!!!  I am going to call my Grandmom and get some more information though.  It was my grandfather’s brothers daughter and my dad said she lived to be fairly old.  So I need to get some info about that. 

I will  be sure to post any and all information that I find!

But you don't look sick - The spoon theory

Spoon Theory

I decided that I would blog about my lack of energy.  I had a discussion with a friend of mine earlier this week about how people, mainly friends, don’t seem to understand that I just can’t get up and go, that I can’t hang out all night and be at their houses every night.  It frustrates me to no end that they just don’t get it.  I’m sorry but I need to reserve my energy for the weekends when I can then get the things done that I need to get done – like food shopping, cleaning and relaxing.  

Upon deciding to blog about this I thought I would copy and paste in “The Spoon Theory”.  But since it is copyrighted and I have no desire to go to jail, I am just going to link it here.  And give my summary of it. 

So this goes out to all my friends who bitch when I don’t come out enough or when I don’t want to spend every waking moment with them.  It is also for my other CF friends who know EXACTLY what I am talking about! 

The spoon theory is about a woman with Lupus explaining what it is like to be sick to a healthy person.  She hands her friend 12 spoons and tells her that is the limit she gets for the day.  Once she is out of spoons she is done for the day.  You can borrow from the next day but you never know if you will need them the next day etc.  She explains that even the simplest things, like getting showered and making breakfast, require spoons.  Each move you make throughout the day needs to be thought out and decided ahead of time.  Nothing can be done spur of the moment.  These are things a healthy person takes for granted – the ability to just GO.  At the end of the story the friend began to understand why it was so hard for her friend to come out.  But she also realized that when she did she her it was that much more special because she used one of her precious spoons on her. 

We all know (us sick people) what an average day is like for us.  We need to decide what we will wear.  There are days when I wake up and I feel tight, congested and bloated.  These are not the days that I choose to wear the button up shirt that is a tad too tight on me.  I wear the big baggy sweater that will hid everything and allow me to be comfortable and “breathe”.  I have to decide if I will shave my legs in the shower, or will bending over that much put a strain on my lungs and ruin my day.  I have to decide what to eat.  Not in the “healthy” person way either.  I have to gauge my tummy and see if there are any issues that day, will cereal be ok?  Should I go for something more filling?  Will I need to stop to get a muffin?  How much food should I pack for the day (my goodness its like food shopping in the mornings for me).  And don’t forget mornings also involve treatments that take an hour.  God help me if I wake up feeling a cold coming on, or with a sore throat, headache.  It just means my day is done before it even begins. 

Work is pretty normal for me.  Except that if I am having a bad CF day I have to conserve my walking energy.  I need to figure out what I need before I leave my desk so I don’t make 50 trips back and forth and wear myself out.  I need to space out my snacks so I am not starving by 4pm and spending a small fortune on goodies from the honor snack.  My mornings I can get a lot done and I try to get most of my walking and “heavy” work stuff done then.  I have the most energy and my lungs feel the best.  By the end of the day I am SOB and trying to breathe while coughing constantly (meds should be helping this a little soon we hope).  So I try to stick with my true desk work then.  I avoid the materials library unless absolutely necessary.  

When I come home from work I need to eat and do treatments and still get to bed at a decent hour so I am rested for the next day.  Some nights I need to go to bed earlier than others because I slept horribly the night before from coughing or what not.  

Even my days off are gauged like this.  I can tell after being up for some time if going out that night or afternoon is out of the question.  Most times I just don’t have the energy and if I splurge and go out it will throw off my whole week.  It will take until the following weekend to catch up.  I may not spend the whole day in bed sleeping.  But I may spend the day reading, relaxing or even entertaining myself online.  These have become the activities that don’t require a lot of energy and can be done easily.  If I want to go out or I have a special engagement for the weekend I need to plan in advance so I can allow myself to get enough sleep.  I need to spend the whole day at home, relaxing so I am not worn out by the evening.  

These are the things I want my friends to see and to try to understand.  I don’t want them telling me that I need to come out more.  Or that I am sad, depressed and miserable and that is why I don’t come out.  I am actually VERY happy right now and I choose to stay home so I am not exhausted all the time.  Do I wish I had the energy I did 5 years ago?  HELL FUCKING YEAH!  Do I sit around sulking about? NO.  

I hope that this blog has shed some light on my average day and an average day of someone with an illness.  No this is not all encompassing but it gives a pretty good idea of a day.  I beg of you to spend the 5 minutes reading the spoon theory and really see what I am talking about here!

neb cups

I had to post this picture.  Actually I had to take this picture for the sole purpose of posting it.  I laughed when I looked at it.  So many neb cups, so little time!!!!  But they are all clean and freshly boiled...ahhhhh relief!

TOBI..day 2

Well guess what?!?!?!?  I SLEPT ALL NIGHT!!  With NO tightness!  The meds finally worked!  OMG I am so flipping excited!  I can finally started combating the damn PA again woot woot!!!  I slept great, coughed up some fun stuff this morning BEFORE treatments and now I sit here doing my morning round and coughing even more fun stuff up.  Boy was I filled with some fun goo, ewww!!!!  :)

New blog colors and some other stuff

I wanted to add my own blog background since I have seen some really fun ones but I have no clue where to add the code.  So I opted to change the colors up.  I think the black might be too much so if it is let me know.  I like how my header pops out though...and it makes it look like the title is cut out and the black background is coming through.  I find that awesome looking.  But you are my readers so let me know how it looks to you all!!!!

On to other news.  I was up half the night suffocating!!  Dam that TOBI!  But by 9 am I was able to fall asleep and sleep well until 11 am.  So I am going to try again tonight and tomorrow night and see how it goes.  If I still wake up all night then I will call my DR on Monday.  I was fine today which is different than most times so I am hoping I just have to deal with the tight-man-sitting-on-my-chest feeling a few nights.  That I can deal with since I coughed up some GOOD stuff this morning :)  And today I am also having some pain which I am attributing to the TOBI.  It feels kinda like glass in my lungs in varied spots.  And it isn't constant and there is no rhyme or reason.  I  have no clue what it is and it is tolerable so no need to call anyone IMO.  

Hmm what else.  Oh I hung out with my mom all day today.  Well I went over around 2.  We just watched some TV then went to dinner at Charlie Brown's.  So yummy!  I had steak and a baked potato and I love salad bars since they can satisfy the CF hunger!!!!  

Tis all for now!  I will update on how I do with TOBI tomorrow!!!!!

EDITED:

Well obviously I figured out how to change the background and I did!!!!  I love the colors woohoo!!!!!!!  Hope you all do too!

TOBI

Tonight I started TOBI again...we shall see if the new meds worked.  

*fingers crossed*

ASID

I did it!!!!!!! I am a member of the ASID now!!! Sweet!!!!!!!!!!!!! They have study programs for the NCIDQ which I will be taking on October!!! It was a fabulous surprise to see the email when I got to work! One mroe thing off my to do list!

YEAH BABY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Mommy dearest

Today I found myself wanting to move back in with my mom.  I am a woman of indecisiveness.  This I am well aware of.  

My mom told me today that she had to quit her job.  She is going for her third back surgery next month and the doctor told her she can not drive a school bus any longer.  She quit Thursday but didn’t tell me until today.  She said she wasn’t sure what she was going to do.  She will obviously have to look for another job once she has the surgery, unemployment won’t help pay the bills forever.  She was told she will be able to collect so that will at least help for a few months.  She is also thinking of renting a room out.  That would gain some money to help pay the mortgage.  Her boyfriend is working steady now but he is in construction and we all know how iffy that field can be.  He may be bringing in money now but in 2 months he could be laid off for a few weeks and then they are screwed.   I told her if it came down to her losing the house I would move in and help out in a heart beat.  

I love where I am living and I love living with Eric.  Not that he and I are messing around or anything, he is seeing someone, but because we grew up together and its comforting having someone who you took baths with and grew up with in the same house as you.  But I always feel out of place and not like it is my house (which obviously it isn’t).  I was this way when I lived with my brother and his family.  It has nothing to do with how anyone acted or treated me, it was purely an illusion in my head.  But I have it here as well.  

A few weeks ago I was thinking how nice it would be to be at my mom’s and on my days off my mom and I could relax together and read in the family room curled up on the sofas – we are very similar when it comes to this stuff.  I dreamt of how it would be to cook fun dinners on the weekends and have people eat them besides me.  How fun it would be to live in a house with an addition that I designed.  

Despite the partying and the drinking she is my mom and I feel bad for her.  I hate that she can’t work.  She has been at her job for 16 years and has had 3 back operations in the last 14.  All because of her job (she hurt her back when she was 18 but the bus driving has reeked havoc on it since).  I am torn.  I don’t want to move again and she doesn’t want me to have to move again.  My vain reasons for not wanting to move in with her are all pushed aside because she may need my help.  I told her I wouldn’t move in if they smoked in the house and she has already made sure it is contained in the back room and if I were to move in, that would be outlawed as well.  

But do I really want to move again?  It would not be anytime soon!  Maybe by the summer which still gives me some months here.  I don’t know.  But I do know that I would be ready to move if she needed me.  And I am sure that once I made that decision and moved in I could change my mind in a few months and be out looking again!