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!

Fun snow pictures

Well since I have been bitching that we never get snow I thought I would post pictures of the 3 inches we got LOL!!!  It's better than nothing :)  And it looks so pretty...now if we could just get the 2 feet I want sheesh!!!!!!!

President Obama

Well today history was made.  President Obama was sworn into office as our first black president.  I have a good feeling about him.  I think he will bring us much needed change and reform.  I was  unable to watch the entire inauguration since I was at work.  But I was able to at least see him take the oath.  We had it streaming on our main computer at work in the conference room so everyone that wanted to watch could.  It was very choppy though and we didn't see it all, just enough to get the gist of it.   I will look for it tomorrow and hope to be able to watch his speech.

I am quite happy with the turn of events and look forward to the next 4 or maybe even 8 years!

Photo Tag!!!!

You have to love these games haha!!!!

I was tagged by Christy :)  Thanks hun I always seem to get them from you!!!!!!

Here are the rules:

1. Go to the 4th folder in your pictures folder and select the 4th picture there....no exceptions!!!!  (ok I will allow only one...if you are naked or doing something dirty/naughty)!!!

2. Post the picture with an explanation and link it back to the tagger.

3. Tag 4 people to do the same!

                                           

Here is my photo.  It is from my friends, Carrie and Dave's, son Carter's 3rd birthday party back in July.  Phew did you get that?!?!  That is the ferris wheel birthday cake my SIL made!  tell me it doesn't look yummy!!!!  All you sweet toothed people like me are drooling!  Carter is the one holding the pretzel in the striped shirt.  My nephew is in the forground in the green shirt with the lollipop.  LOVE them both!!!!!!!!!!!!!!

Now for my 4 people!

I choose:

Lisa

Bree

Tara

Jenn

There are more I would have loved to link to but rules are rules!!!

Enjoy ladies!!!!!!!

<3

Clinic Appointment

Well today was clinic.  And I am NOT getting locked up!  I was actually a little surprised, though I woke up this morning and felt better than I had in a few days.  I am stable right now.  First numbers are today the ones after are last appointment on November 24^th.  

FEV1 - 1.24L (40%)  1.26L (40%)

FVC - 2.11L (57%)  2.40L (58%)

FEF 25-75% - .55L (15%)  .49L (14%) 

My numbers are down very slightly.  But nothing that is worrisome.  

And holy shit I gained 3 pounds!!!  I now weigh 121!!!!!!!!  I  have never been so heavy in my entire life!  The dietician said my ideal weight is 125-126.  I said phooey I am staying here!  

I talked to him about the TOBI and my tightness and he put me on Singulair and Symbicort.  He said to stop the Serevent and just do Symbicort.  My airways are inflames and reactive so hopefully this will help it so I can tolerate TOBI and keep kicking the PA’s ass.  I am also to do Albuterol before I do TOBI (as normal) then do the Symbicort then put Albuterol in my TOBI and see if that helps also.  If it doesn’t help I am to call him and he said we will figure something else out to combat it.  Fingers crossed it does though!!! 

Let’s see what else?  Hmm.  Oh I asked about the blood in my stools and he said it sounds like hemorrhoids (ahhhhh!!!!!!).  But that is normal given all the coughing that we do.  So that is nothing to worry about.  He said or it could be something like the enzymes not dissolving completely where they should and when they get to my colon/intestines they are breaking down the tissue there.  They don’t have any clue it is body tissue and not food so it just does its job.  So that is a possibility too.  

BUT the fun part of the appointment was…he is trying to get in contact with the colon guy at HUP.  Apparently they are doing some sort of research on families with genetic colon cancer.  When I told him about my family’s history all he could say was “wow”.  I guess we had never told him the extent of the genetic link.  He was floored that it is basically in my genes to get it.  He could not get a hold of the DR while I was there so he is going to call me back at some point and let me know what the DR says.  So now I am going to call my Grandmom and see who had it and all the fun lineage stuff. 

That was it.  OH yeah I had my dermatology appointment this morning too.  She prescribed me a medicated face wash and cream to use.  So I have to go back in 8 weeks to see if it helped at all.  I am hoping it does.  Not that my acne is all that bad but it is leaving purples spots all over my face and I look polka-dotted!!!!  

Below is a picture of Philly from my view stuck in traffic at 30^th and Market street.  Fun times!!!  And also a couple from Sunday when Rocky, Maggie and I were all cuddling in my bed reading.  So cute!!!!  And little Owen from Sunday too.  He is adorable!!!!!!  I have a video of him crawling and if I can figure out how to upload it I will!

Mucus...oh the joys of CF

I am mucusy...yuck.  Full of fun yellow/green goo.  I think there is a 50/50 chance I will be thrown inpatient on Wednesday at my appointment.  If so I am gonna ask to go in Thursday so I can at least come home and pack and tell work.  I am NOT packing a bag so I have the option to go in the next day.  Besides I am not totally sure he will want me in.  I might be ok.  I guess we will see how far my numbers dropped.  

So until then I will continue to spit the yummy goo and cough till my head explodes!!!!!!

<3

So very tired

I have been sitting at work all day trying to concentrate but I can’t. I’m just so tired. Partially because I was up kinda late reading. Partially because I am just tired. Worn out. Done. I keep thinking about how nice it would be to work 4 days a week and only 5 hours a day. Or 5 days and 4 hours. Something small and little and short like that. But instead I work 4 days a week for 10+ hours. And I only do this because I NEED health insurance and I can’t afford to get it on my own. Besides COBRA is 18 months. Again with this whole shit I know. Are you sick of reading about it because I am tired of writing about it?

After the holidays, we all came back to work and those people that were gone for the full 2 weeks were happy to be back. I was not one of those, though I was close only being in 2 days between Christmas and New Year’s. My cubby-buddy commented that she could never stay home all the time because she would get bored not working. Me, I think I could get used to it. The ONLY reason I stay is because of the health insurance. It is fabulous. And the only reason I don’t go part time is because I lose my health insurance and have to COBRA it. It’s all or nothing with my company.

I don’t want to work anymore. I don’t. Plain and simple as that. I am tired of getting up at 5:15 to do an hour of treatments before work. Then working all day, coming home eating and doing another hour of treatments before I climb into bed to read for an hour. And I’m tired of still not being able to fully function when I do my treatments. I’m tired of spending my days off in bed or lounging around because I have no energy and want to conserve what I do have. Maybe I am feeling this way because I woke up with a nasty sore throat and swollen glands that won’t disappear.

Where do people go that have no where to live and no one to support them? I don’t trust living with my mom. She is too financially unstable to feel comfortable staying there. I would end up having to loose something of mine so I could help with bills more than I could afford. That would totally suck. I would consider my dad but they don’t have a lot of room. And I don’t want to impose on my brother and SIL even though they said I could always go back to living there. I am in no way asking any of my friends to help me out. That is too much to put on someone. They have families and kids of their own, no need to adopt a 28 year old kid too.

I wish there was a place like senior living that was based on income, offered in-house everything like laundry and was close by. I wish I could live in those assisted living places. I wish I could afford to stay out on my own. I wish I was married. I wish I didn’t have CF.

Haunting

So I had the WEIRDEST dream last night and I needed to share it before it escaped me.

As everyone knows my step niece was killed in a car accident back in June.  Well last night she was in my dreams as a ghost and haunting me.  When my phone would ring she would be the picture and the ringtone would be her saying "hi Amy".  When I would try to drive my car she took over the car and would not let me steer, driving me into other cars and embankments (never fast just as sport it seemed).  I told my dad and step-mom and they wanted to see it and hear it too.  It was SO weird!!!!  In my dream I was also working back at my waitressing job and she was there the whole night screwing me up.  I eventually had to have my SIL take over for me so I could leave because I couldn't do ANYTHING.  The dream started out as me and my family trying to rent out the 3rd floor apartment in hour house (does not exist in real life but on the family farm the 3rd floor is haunted) but it was haunted and it was finally realized that it was her who was doing it, my step-niece. 

I'm telling you this was such a wacky dream and I can't for the life of me figure out if she was visiting me in my dream or I just decided that I was too be a weirdo in my sleep.

Who knows but we miss you Ashley!!!!!!  <3

Harrisburg - Inauguration

Today was the inauguration.  It was really cool.  Of course we could not actually GO in the house but they had TVs set up everywhere so anyone could watch it.  The whole process took about 30 seconds for the new representatives to swear to uphold the law blah blah blah.  But it took a while to actually GET to that point!  We got to Harrisburg around 11:15 and we left around 2pm.  We wondered around the capitol building for a little while then went to the Ryan Building where Frank had tables set up for us.  Each representative had a space designated for his “fans”.  We had stickers to recognize us.  It was like a big kids field trip!!!!!  HAHA!!!!  I took a bunch of pictures and I will post some of them here.  Since we couldn’t get into the chambers to watch them sworn in I took pics of the TVs!!!  

        

  
    

being sworn in!!!!!  We have NO idea where he was actually sitting LOL!!!!!!

My friend John and I stuck together and we wondered off to get “lost”.  It was fun seeing the offices and the secretaries, opps sorry administrative assistants of the Reps.  Me being the pussy foot that I am was nervous the whole time that we were gonna get kicked out haha!  But we didn’t.  I used the potty on the one floor and would have taken pictures if people hadn’t been in there.  Oh well!!!!!  I didn’t wanna look like a total tourist / out-of-towner!  

I got a great work out walking up and down tons of steps…who needs a gym membership I can just become a member of Congress!!!!!!  Next stop, Washington D.C.!!!!!!!

pooh

Pooh...I feel like pooh.  That's it.

Night!!!

New Year's

    

my BFF and I...It was well past 12 here but she wanted the pic with the hats on :)
  

my mom and I...yes that is me under all that!!!

my mom, her boyfriend and my aunt

New Year’s Eve was a lot of fun!!!!  I had a great time at both house parties I went to.  And I managed to stay sober so I could drive home and sleep in my own bed.  Mainly because I had to get up so I could make it to LBI (Long Beach Island in NJ) for the lighting of the lighthouse.  

Which I was wrong about in my previous post.  It hasn’t been lit since 1932.  It was built in January 1859 so it was the 150^th anniversary of the building of it.  It was FREEZING!!!  As you will see by the pictures we were all bundled up.  My batteries in my camera wouldn’t even work right!  At least that is what some guy told me when we were leaving.  I managed to get a few pictures before it just died on me.  We had to walk a few blocks to get to the park.  Seems everyone in NJ was there to see the lighting!!  And LBI is a small island so God only knows how it was holding all those people hehe…well it does during the summer but winter it is like a ghost town.  My Aunt lives down there so we were able to warm up at her house.  

So back to new years.  I did not get my new years kiss, though there really wasn’t anyone there that I wanted to kiss.  And the one person I would have kissed was not able to get out that night.  He was on baby duty.  Oh well!!!!  I still had a fabulous time and stayed out until 3:30am!  SO LATE for me!  Even my BFF commented that she couldn’t believe I was still there. 

Well enjoy the pictures!!!!!