the bloody nose from hell

Well that was awesome just when I'm about ready to drift of to dream land BAM a monster of a bloody nose attacks me...I didn't realize it until I felt warm something dripping off onto my favorite pillow case that my aunt gave me with cupcakes on it and if that's not bad enough as I'm reaching to grab a tissue blood attacks my sheets. Not any sheerts my hello Kitty sheets. Take anything but Hello Kitty! Damn you bloody nose you take what means the most to me...I hate you. Looks like new hello kitty sheets just went to the top of my wish list for Santa.

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mom and dad

You always hold me close when I'm scared. You make me laugh when I could easily break down and cry. I see my pain in your eyes. every scare on my body is a battle wound just a reminder of the disease we fight. With every punch cf takes at me it leaves a bruise on your heart a small reminder of this damn thing I live with every day. I don't know what it's like to sit by and watch helplessly while you're baby fights for every breath...I see the strength in your eyes and the pain that cuts right to you're heart. Together we fight. Every breath I take I fight for us. I love my family.

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weakness

Some days life is a blur...I can get into the mindset that you never existed and what we had was a dream. You were just a thought I had in my mind so I'm not missing someone and a love I thought was real and forever. Then somedays it takes everything I have not to text you and tell you I miss you. I miss you. I hate that when I think of you the first emotion is missing you life was so easier when it was hate. Hate was a simple emotion compared to missing you hate had no rhyme or reason it was just hate but to miss you brings thoughts and memories I really thought when you said forever you meant it...my mistake for believing you.

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wishful thinking

Does my Cf define me? I'd like to say no but in all honesty yes its a big part of my life. As much as I wish you could just have me...Jessica you also get my disease. We go hand in hand. When I was younger I was lucky enough not to be known as sick Jessica just Jessica and that made life alot easier I got to let people know about my disease after they got to me.
Sometimes I let myself imagine who I'd be without this disease and where would I be...but that is just wishful thinking. No matter how long I spend day dreaming of a different life ill always come back to my Cf. I'm okay with my disease it isn't something I would choose for anyone I love or even someone I dislike. I think I got it for a reason; a friend once told me because I was strong enough to handle it. I'm not sure I agree I don't fell strong enough but I know the people who surround me make me strong. I'm a wishful thinker in many ways...maybe that's a blessing or a curse you can decide. I'm laying in bed listening to my feeding machine hum along to the silence of the night it is soothing In an odd way...the comforting sound puts me to sleep and lets me continue on to sweet dreams

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this Jessica...

I knew along time ago I couldn't live a normal life. But I pretended. See I'm a great pretender. But why am I trying to be something I'm not? The other Jessica isn't as great. At least I don't think so...and my opinion is the only one that matters. This Jessica loves movies...swinging on the swings with her bestie Mattie...loves to cuddle with my babies and sing in the car with her "sister" Brandy. Loves mobbing in her oldest brothers hummer (hi Joe Joe) and watching her Mom dance in the kitchen while making dinner. This Jessica loves being the only girl (other then Betsy) who gets her Daddys attention and nothing is better then Daddys hugs. And this Jessica has a brother that is beyond what she deserves but he gratiously loves her unconditionally. Its easy to become someone your not when the grass looks greener on the other side.This Jessica is differant then most others but its the one thing I think most people appreciate about Jessica. I know its what I appreciate about Jessica. So here is my promise to my invisable friends and my family...I promise you that from now on all you will get is the real Jessica no matter what and no matter who comes into my life. Sorry for the spelling and grammar errors I do the best work from my phone

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little girl...big disease

Sometimes I lie so much I forget the truth. It scares me at how talented I'm becoming at tricking everyone to believe I'm okay. My doctor said its normal with the progression of my Cf to have good and bad days but lately its just bad days and even worse days. Sometimes I feel like I'm going crazy like cutting my bangs...wtf. Certain days I feel like I'm loosing myself to this disease not only physically but mentally too. Its easy to get overwhelmed with this disease I'm just a little girl with a huge disease that demands alot of my attention...its easy for people looking in to not understand what it's like but truthfully I'd never ask anyone to spend a day being me all I ask for is compassion and to understand the things they can't see...and maybe a hug...you can never have to many of those

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you did what!?

So this morning i wasn't feeling quite like myself but thought nothing of it....shook it off and kept going on my merrily way.

Fixed my hair and noticed my hair is becoming a pain in my booty and thought i should trim my bangs...looked at the scissors in the drawer and then the next thing i knew

i cut my own bangs...

first let me state i have no cosmetology training what so ever and when i looked up i had cut a chunk of my bangs off...i shrugged and kept getting ready. As the chunk of uneven bangs are just chilling on the side of my face i pin them up and keep truckin along.

As i left the house it hit me...HOLY COW i cut my own bangs...what a dumb ass. I knew better. I swear i don't remember cutting them i remember looking at the scissors and then BAM it happened.

See my point to this story is don't cut your hair when you have had no experience and also to find out my blood sugar was high...maybe i can blame the ugly bangs on the diabetes.....sounds like a plan to me. CFRD you won this round

Are you there Atavan? Its Me. Jessica

Atavan...i have high hopes for you.

Anxiety is a major issue with me right at the moment. I'm hoping with some drugs i can overcome the panic feeling in my chest and the need to remind myself to breathe.

I have been busy. Mostly by my design and it has been working.

Remember when i said Matthew and I are acting mature!? well i might of spoke to soon. I may or may not have sent him mean text messages...at this point I'm not ready to disclose the culprit. maybe that's another side of anxiety...hostility?

I had another CF check up in LA today so my best friend and I made the long haul and it was a good appointment...I'm possibly going to start IV's in 2 weeks if I'm not kicking this little cold i have.

This little doll is Emily! She made the trip with Brandy and I to the doctors...she didn't mind the appointment and saw Auntie Jess talk to all the doctors. She is a sweetie pie.

I'm feeling good days and bad days as usual but was confirmed that that's a sign of the disease progressing.

with love to all and i hope to be back into the blogging mood soon.

i love

this boy.

he has brown eyes that are big and beautiful

A smile that melts my heart

and a laugh that makes me smile from ear to ear

He loves to cuddle with me and tells me he loves me every time i see him

He probably gives the best hugs and kisses any girl could want

He maybe 4 but he has my heart

I love you TT

5 years

"Im sure the view from heaven
beats the hell out of mine here
and if we all believe in heaven,
maybe we'll make it through one more year
down here" - yellow card

5 years ago today Maggie Marie Mackey lost her life to Cystic Fibrosis.

The same damn thing im fighting every single day.

Maggie was a dear friend of mine and ever since she has past i havn't been the same. I think part of me went with her in a weird way. I never knew anyone who died from CF. When she died i realized it was possible that at any time that could be me, because of her everyone i love knows how much i love them, i don't hold back and not say that one little thing i wanted to say.

Maggie, im sure your having one hell of a time. some times some days i dont know if there really is a heaven. Thats my own issues but i know in my heart where ever you are your having fun smiling and breathing easy. 5 years ago today i lost my friend but heaven got an angel.

Should i stay, or should i go?

A song by the Clash.

Im sure you know the song.

Well i stayed and he left.

Matthew left.

Im not sure if he "walked" away is a good way of describing it.

He walked away and never looked back and honestly i never grabbed for his arm

begging him to stay. Maybe thats what he wanted from me. who know's.

but ill tell you the things i do know

1. surprisingly we were both very mature

2. he asked for his ring back and i did in fact give it back

3. Im fine, i had about 2 hours of cryng

4. I do in some ways miss him

5. I didnt push him away he left willingly

6. It probably was for the best

So im officially a single lady (do you know that song?)

and its kinda weird for me but im trying to embrace it as much as i can

I have amazing friends and family who have been texting me or calling just to

make sure i'm fine.

So there is no wedding in sight for me. Poor Momma she is going to miss being on weddingbee...her ultimate favorite blog...other then mine of course.

so its tonight i inform you all of my life changing love altering news.

If anything changes ill keep you up to date.

Momma, what do you think?

That's me, a Momma what do you think kind of girl.

always has been and probably always will be.

"Momma what do you think? Is this a pretty dress?"

Momma what do you think, am i doing the right thing?"

Momma, what do you think is he the right one?"

Momma i need to be admitted, what do you think?"

I don't think anything will ever change that relationship and I'm perfectly fine with that.

When i was younger; I'm sure many of my CF Mommy's can relate to this...she was the one who noticed the things i didn't...the increase in cough the lack of appetite and the overall not being my "normal" self. See, i was to busy being young playing with friends involved in school...my job was to be the kid and she got the burden of watching my disease slowly take over.

And its a hard transition from childhood to young adult to adult. but including the ones who love me the most is the easiest thing.

Then at some point i would break down and say "momma i don't feel good what do you think?"

After 23 years i still find myself asking that question.

It has been a difficult transition in some ways...sometimes i know whats right but i know doing the right thing is an inconvenience. so back to momma advice i go. She keeps me grounded. but don't worry she lets my feet leave this earth for a little...encourages me to be normal and enjoy my life

Asking for her opinions and thoughts and the thoughts of the ones i love isn't a sign of weakness in my opinion i think its a smart decision to include the ones i love in on my life my health and my happiness. There are some health care providers who find this a sign of weakness but really is it weak or is it truly brilliant?

You tell me.

How do you handle the transition? and if you already have, how did it work for you?

Knock Knock

Knock Knock!

Who’s There?

Isabel.

Isabel Who?

Isabel broken? I had to knock

Leave me a comment, Who are you and what do you want to know about me?

A war is going on

Apparently we have a gang problem...there seems to be a power struggle between good and bad mucoids in the neighborhood (meaning in my lungs) It recently has been brought to my attention I have three different mucoids living in my beloved lungs. Now two of the three are classified as "bad" leaving the single mucoid as "good." Now my extensive knowledge about gangs leads me to believe shortly we will experience a power struggle trying to get the good mucoid to cross over and join the "bad" gang. That's bad news for me, see these bad mucoids are bad mammajamas and they don't respond to antibiotics very well. This would leave me in bad shape but these gangs clearly have no concern for my well being so if they want a war a war is what they will get but let me assure you I'm not going down without a fight.

Conner

we lost our bravest fighter. words cannot express the pain i feel for the Jones Family. so i will not try.
breathe easy breathe free sweet Conner. you will be missed but never forgotten. Hevan just earned the sweetest angel to ever walk the earth. breathe easy little man

bently

this is the love of my life bently rolls royce

its 3:45am

and im awake, blogging.
Mom and Dad are away celebrating there 27th wedding anniversary. Which means its another weekend by myself...okay well not alone Aaron is here. i dont function well with out my parents im extremely attached to them; why i have yet to figure out. lol
im in bed with betsy my moms pride and joy. a 80lb bulldog who throws up alot and gets pissy if you dont sleep in bed with her. she is a handful but keeps me busy trying to make sure the dog is comfortable with out "our" mom around. sometimes some things in life are bizare and that saying was one of them.
goodnight from betsy and I

bad day

today was a bad day one of those days you wake up then suddenly feel like a bus ran you over so you do what any logical person does; go back to bed.

sometimes you pick yourself up off the floor and push ahead. Today wasnt one of those days.

Sometimes all the shit life throws your way you learn to shut off. emotionally that is. but when you do that its hard to flip that switch back to normal. See for me i shut down on the people i love the most its like lights on but no one is home kinda thing. I'm working on feeling more alive and not a zombie.

sleep is my coping mechanism. I sleep like 12 hours or more a day. I do what im good at which is sleep. I hope once i start insulin i can sleep normal hours and not be so cranky.

btw i think this is my 100th post

its official

i have cfrd. im pretty bummed so anyone out there with cfrd i need to know all the details tips and tricks. give me all your info i really need some help.

hope everyone had a good monday

first night with my machine

don't I look pretty and do you see my cookie

bed time

I'm laying in bed listening to my feeding machine the first time In months and I feel ashamed I feel defeated I feel relief. As much as I hate it it has the potential to help me do something I can't do. It doesn't seem fair to hate on it. Secretly I'd like to throw it against the wall. Well its not a secret anymore. We have a love hate relationship. (Sigh) my life is getting weirder. The beauties of cf

i have been hiding

Its probably no surprise i have been absent.

Its kinda on purpose i must confess. It seems like everyone is moving on in there life, and i don't mean getting new doctors or new place; i mean they are dyeing.

death. It goes hand in hand with life.

but i don't like death.

Its always present in my thoughts. Seeing others I admire pass away and move along to a better place. Its an awful year we are loosing some of our best. The strongest are getting weak the living aren't living anymore.

I don't know how we all do it mourn another death of someone who looks like me, or maybe its your child; niece or nephew. Whoever the person is it hurts.

My Dad asked me why do i read so many stories and how do i handle the loss of another Cyster or Fibro?

well honestly its another person to meet up with in heaven; its someone who is in my thoughts and occasionally if I'm lucky i see them in my dreams. Its weird how i don't know them but at the same time i know them on a different level. Its Cystic Fibrosis that ties us all together. Whether were here on earth or watching in heaven we still have that connection. CF.

SO i have been hiding quietly reading and mourning the ones we lost. I cry for them and there families I pray for their pain and i rejoice they are at peace. I hope someday when its my time everyone shows the support to the ones i love because thats what makes our community one of the strongest.

with love and hopes of good health for all

MIA

Im sorry i have been M.I.A.

i have no excuse. I wont even try and make up a lame excuse and try and fool you all, your to smart.

I have been well, i have found there are just good days and bad days. I just take each day as it is. I enjoy the good days and well the bad days, lets just say i could do without those.

My walk is coming up next week. Im excited. I enjoy this event its a nice low key event where i can sit and watch everyone. Im not much for walking in long doses.

Im starting the planning process of my wedding and its hard, i dont do well with stressful situations and im no good at making decisions, i buckle and just admit defeat and just say VEGAS lol

I have a great Mom who is there the whole time and a great support team.

Did i tell you how much i love my family? ill post that another time.

I hope everyone is well and enjoy the days ahead, you only live once; so make the best of those days. Good or bad

Late night Mac N Cheese

I just made myself some home made mac n cheese, and for the record...It always tastes better when mom makes it.

Started my doctor diary today. My doctor wants me to keep track of my health on a daily basis. What i need during the day example extra xopenex ibuprofen etc.

See the problem is my doctors are very clinical, they feel they need to treat the disease based on statistics, and well I'm not one of those people that's average in CF. My team is new to CF and are following the guidelines very strictly and even though i have lived with CF for 13 years (i was diagnosed when i was 10) I clearly have no idea what I'm talking about. So i need to prove that I'm sicker then what i look. Sounds like a hard task. I mean just because i come to my appointment with make up and hair done doesn't mean everything is fine. Like i told my mom i feel like they think I'm a hypochondriac. The joys of me

with love

Another

Another one breathes easy

Miranda, i didn't know you but i can imagine the pain in your family's heart.

My heart aches for you little girl but breathe easy you earned your wings.

Days like this make fighting hard.

please raise your hand if...

you have the best family ever (raises hand)

feeling bad is normal these days. it comes so easy to spend all day on the couch watching some good movies and well, some bad.

I LOVE my family and their support...to be honest i wish i had everyones support like i did almost 3 years ago. I miss those days.

i feel okay i think the oral cipro isnt going to work, just my gut feeling. Maybe i need a tune up with the dreaded hospital stay

raise your hand if your confused (raises hand) :::sigh:::

http://www.cff.org/Great_Strides/JessicaBenson6603

lets go people i have a goal and were going to make it happen!

lets go!!!!

3am madness

coughing up blood 3:10am February 24th

Stanley my fungus ball acting out again. Stanley is like a child always begging for my attention and heaven forbid he isn't the center of attention.

3:17 still feel the blood gurgling in my lungs,starting to feel my heart slow down and the vicodin invade my body. the propped up in bed makes me want a hospital bed for nights like these.

3:21 time to rest emotionaly and physically tired.

Just the Beginning

So, a few days ago Jessica and Matt decided to move forward with setting the wedding date. Im happy to say It will be Oct 2011. The wedding and reception will be held locally. Jess and I got to taste cake already. Sorry Matt you can go and make the final decisions with her,lol. So, its just the start of some really stressful decisions but very exciting for my Daughter and future Son-in-law. I can't wait to put my organizational skills to use. xoxox Mom

nothingness

I don't have much of an update i just have nothingness

see nothingness is good and bad

its right but its wrong

its nothingness

I don't feel great but i dont feel awful either im right in between, im at that point were you know something should be done but just not sure which road is the right road. I need to start working on my CF t-shirts for great strides but im having a hard time coming up with an idea to get the ball rolling.

good night!

Shake-n-bake!!!!

well for christmas everyone got passes to race indoor go karts!

It was alot of fun, i got 10th place, out of 10 haha

I only raced 1x but it was alot of fun!

Everyone had a good time and i think we found a new hobby!! here are some pictures from our fun filled day!

whooo hoooo its race time!!!

Hey stacy!! your number 1!
Me in my Kart!! haha driving is stressful~
Going for the pass, Jason #38 and Aaron #54
Trista, posing while they shut down the track! gooo speed racer
Aaron driving his heart out and getting 1st place
Stacy and I
Top 3 racers, Mike Aaron and Trista

The whole group after racing!

Rain Blues

This is Jessica's Mom, I am sitting here reading other CF blogs and waiting to hear from Jessica. Matt took Jessica to her Infectious Disease Dr. today in Valencia. I am impatiently waiting for some news, good news I hope. I know by how the last few weeks has been for her that we are all on pins and needles. Its never good when she coughs up blood. The frustration is overwhelming because she just finished 3 weeks of home IV's. Yet she is not feeling any better as a matter of fact her lungs have an awful rattle. You can put your hand on her back and feel the rattles and hear the wheez. Please wish Jess some good wishes. I know it would make her smile especially now that she has got her blog able to accept comments. Jessica I love you and am patiently or not so waiting to hear from you.Mom xoxoxoxo

rain

rain rain go away come back another day, that seems to be the song stuck in my head for the past week

today was the last round of ivs for me but im concerned about my cough its a deep cough with little mucus but what concerns me the most is the rattlie lung and wheezing i find it hard to catch my breath at times. I put a call into my cf coordinator to see what she thinks
good night

Happy 23rd Birthday Jessica

Jessica, Your dad and I want to wish you a very Happy Birthday. We love you so much, and hope you start feeling better soon. I know you feel awful today but I hope that with in a few days you will be your happy smiling self. So, just in case you forgot. (lol) love Daddy and Mom

what a cutie!

Hello Baby James Benson

What a cutie! I could just keep him 

such a happy baby

This is James first time in California he is 18 months and probably the cutest little cousin i have with those blue eyes. He's Going to be a heart breaker.

Here is James and poppa Joe Joe

"twinkle twinkle

little boy

how you fill my heart

with joy."

Even though we just met, we love you James

S0o0o0

So i was just informed that you cannot leave comments so i figured it out and changed it, here I'am thinking no one reads my blog!

so leave me a comment and say hello!!!

2010 has just begun

it was an early morning dash to get out the door for my appointment in LA, I'm happy to report it was a good visit and we figured out 2 more weeks of iv's for me (yay) my weight was about the same and they are pushing hard for weight gain, so i come to you blogger friends have any of you tried adding 1 tsp of virgin or olive oil to your night time feedings. My dietitian is very confident this will help me add calories so 1tsp per can for your feeding. any ideas

Had my yearly blood work done so that's over with but i think the exciting news is we will be getting our own cf ward in the hospital. definitely the greatest news ever! Over all good visit weight 104 pfts normal range and left feeling comfortable about where I'm going health wise and who is there with me in this wild ride. goodnight

Happy New Year

This is a new year and a new beginning... sadly i start the year with Ivs and the most lovely prednisone , which is giving me all the great things that come with it..mood swings

and high sugars and that taste in your mouth that makes everything taste odd. Sigh

The Joys of CF.

Aaron is having a good night with Trevor drinking there root beer vodka LOL they are funny. They are dumb and dumber for sure! Sorry Aaron but tobi and i are sleeping in your bed...thank goodness he dosnt read this blog LOL

Matthew is hard at work. and I miss him very much.

This Cutie melts my heart!!! She is Matthew's cousins daughter and she is a doll. <3

Im tired and for some reason i cant sleep i think thats another side effect of prednisone only 3 more days. wish me luck....better yet wish the ones around me luck. haha

Happy new years everyone. I hope 2010 is a healthy and eventful year. With lots of Love and good things to each and everyone of you.

Happy New year, keep your loved ones close

Aaron and I Christmas Eve.

Stacy and I playing Miley Cyrus. I <3

Ronald Mcdonald and i at Children's Hospital Christmas Eve.

Melissa And I with her snazzy Pink laptop that my family and i gave her for xmas

She is on Oxygen and has CF like me and is only 14.