Danimal

Current @brewdogleeds toilet chalkboard graffiti. #patsharp...

Fri, 17 May 2013 19:24:42 +0100

Current @brewdogleeds toilet chalkboard graffiti. #patsharp #shark #patSHARK #steveirwin

Got this little idiot right in my face (phone was almost against...

Fri, 17 May 2013 10:31:09 +0100

Got this little idiot right in my face (phone was almost against my face when I took this) #kitten #catsofinstagram

I’ve had a few pints of shitty booze and a good whiskey tonight. Yeah. Nothing more.

Fri, 17 May 2013 02:29:17 +0100

I’ve had a few pints of shitty booze and a good whiskey tonight. Yeah.
Nothing more.

Simon & Garfunkel ‘Bridge Over Troubled Water’...

Thu, 16 May 2013 16:14:50 +0100

Simon & Garfunkel ‘Bridge Over Troubled Water’ #vinyl was also purchased today. Also 1 pound.

I picked this up today on 12” #vinyl for a quid.

Thu, 16 May 2013 15:37:59 +0100

I picked this up today on 12” #vinyl for a quid.

A ‘lategram’ from #hawaii I was getting cans of Mott...

Wed, 15 May 2013 19:27:35 +0100

A ‘lategram’ from #hawaii I was getting cans of Mott on the planes. Mott Mott Mott.

Stolen from @mavayla the girl and I on the birthday. Ultimate...

Wed, 15 May 2013 01:25:31 +0100

Stolen from @mavayla the girl and I on the birthday. Ultimate firework ice cream.

After 2.5 weeks in hospital, I’m out. I’ve had 24...

Fri, 10 May 2013 22:46:41 +0100

After 2.5 weeks in hospital, I’m out. I’ve had 24 hours since my last Tob IV so it’s time to start on the Podhaler for the month. Lets rock! (And not cough) #cysticfibrosis #cf

invisibleconfessions: Amanda (her mum) and Alyssa, 3 years old,...

Fri, 10 May 2013 21:19:39 +0100

invisibleconfessions:

Amanda (her mum) and Alyssa, 3 years old, who has cystic fibrosis-

Me: How do you describe Alyssa? Sick, disabled, differently-abled?

Amanda: It’s not a disability, it’s a medical condition, which is what we keep getting told over and over again.

M: Do you worry she’ll ever be treated differently?

A: Yes, all the time.

M: Can you think of anything positive about her impairment?

A: The CF community is great. There’s a huge online support system.

M: What do you dislike most about her condition?

A: Everything. The cost, the treatments. The cost is huge and the treatments are horrible for her.

M: Do you think people around you are, for the most part, understanding of the condition?

A: No, they have no idea what CF is, that’s their biggest problem. People who know me are really cool but the general community have no idea what it is.

M: Do you hope she’ll ever be treated specially?

A: Yeah, I hope so. It’s funny ‘cause it’s a medical condition, but it effects everything.

M: If you could take away her condition, would you?

A: Yes. In a heart beat.

M: Do you think she finds life harder?

A: She doesn’t really know any different right now.

M: Do you think she ever feels different to other kids?

A: Not at this point.

M: Did getting a diagnosis help you?

A: No, it made things worse.

M: Did you know something was wrong as soon as she was born?

A: I did, but I didn’t know what it was.

M: Is there anything else you’d like to share that you feel is important to your story?

A: I just want people to ask questions. That’s the biggest thing, people are too scared to ask, but we’re very willing to talk about it. We get stares sometimes, too, but for the most part, it’s very invisible. The worst thing we get is, “but she doesn’t look sick.” Okay, you come home with me and see all the things we have to do to make her look like this.

M: How does Alyssa’s illness affect you?

A:

I haven’t been able to return to work yet

I lost the relationship with her father

Financially it is a very expensive illness

I have had to spend a lot of time away from my other children

I have struggled immensely to find another partner that is willing to take on the responsibility of me and my children

I find it difficult to find anyone that is willing to babysit, so that I may go out

I have had to learn to deal with the medical system (which is a whole new world in itself)

Today when I got home and emptied a bag, Panini jumped straight...

Thu, 09 May 2013 22:08:20 +0100

Today when I got home and emptied a bag, Panini jumped straight in it. #kitten #catsofinstagram

I haven't had my blog for long so i guess I'm new to the 'CF community' but it's so nice to see that you're engaged, congratulations!

Thu, 09 May 2013 15:00:59 +0100

Well, welcome I guess!

And thank you very much!

YAY! CONGRATS! (I've been wondering if and when this would occur, good stuff) :D

Thu, 09 May 2013 11:17:53 +0100

Thank you! :D A lot of other people were wondering too, so you’re not the only one in that camp! haha

Congratulations on the engagement! :D

Thu, 09 May 2013 11:00:13 +0100

Thank you! :D

So I proposed to the girl today...

Thu, 09 May 2013 00:45:00 +0100

She said yes. Which is awesome.

I’d like to write a lot more about this, but not sure what to write I’d end up rambling, I’ll leave it at I’m very very happy.

And to celebrate we are wine tasting. (at The Outlaws Yacht...

Wed, 08 May 2013 19:27:10 +0100

And to celebrate we are wine tasting. (at The Outlaws Yacht Club)

Today I proposed to @haileyvonbomb she said yes.

Wed, 08 May 2013 18:27:05 +0100

Today I proposed to @haileyvonbomb she said yes.

Location of my #portacath a device under my skin which needles...

Tue, 07 May 2013 22:56:00 +0100

Location of my #portacath a device under my skin which needles are put in for IV antibiotics. All my veins are dead. The tape covers my nipple 🙊 #cf #cfawarenessmonth

zomg lol!11!!!one

Tue, 07 May 2013 22:41:52 +0100

Hair: What hair color looks best on you and what's your natural color?
Skin: Do you tan easily?
Eyes: What is your favorite show to watch?
Nose: What is your favorite perfume/candle fragrance?
Mouth: Do you want to kiss anyone right now?
Tongue: What was in your last meal?
Windpipe: Do you sing?
Neck: Do you wear necklaces?
Ears: How many piercings do you have (if any)?
Cheeks: Do you blush easily?
Wrists: Have you ever broken a bone?
Hands: Are you an artist/writer?
Fingers: Do you play an instrument?
Heart: Are you in love? If so, does the one you love know?
Lungs: Do you smoke cigarettes?
Chest: Are your maternal/parental instincts strong?
Stomach: Do you feel confident in your body image?
Back: Are you a virgin?
Hips: Do you like to dance?
Thighs: Has anyone ever called you fat or ugly?
Knees: Have you ever cheated on someone?
Ankles: Have you ever been arrested?
Feet: Do you ever wear heels just for the hell of it?
Toes: Do you like country music?

Forgot how much of a bastard Hypotonic is. I’m not prescribed it for home, I generally go on...

Tue, 07 May 2013 22:27:33 +0100

Forgot how much of a bastard Hypotonic is. I’m not prescribed it for home, I generally go on it once a year in hospital.

Well today marks 14 days in hospital, and usually 14 days I end up going home, but unfortunately...

Tue, 07 May 2013 21:58:14 +0100

Well today marks 14 days in hospital, and usually 14 days I end up going home, but unfortunately I’m staying in a few more days.

Haven’t done a lung function test since thursday or friday, that was at 49% usually I’m at 50-55% at discharge. So unless that’s dropped that’s pretty much at discharge level.

Unfortunately my infection markers are up to 11.3 (nothing to worry about I guess, but they shouldn’t be going up) and my exercise tolerance isn’t back (by that I mean I’m still getting breathless when I walk).

So the general plan of action is some more IVs same ones (mero/tob) hypotonic saline twice a day to try loosen any crap in my lungs and the gym action, hopefully a couple/few more days of that and my exercise tolerance will be back to where I want it to be.

As I’m pretty much there/well the Dr was pretty hesitant about prolonging the IVs as we all know how toxic they are, particularly the Tob. (Yay for possible deafness and renal failure!) So I won’t be in for too much longer.

Looking forward to getting out, getting back home, spending time with the girl and the kittens!