Danimal

Breakfast of champions. Thanks to @keely3780 for the Jaffas!

Wed, 22 May 2013 10:31:15 +0100

Breakfast of champions. Thanks to @keely3780 for the Jaffas!

I’m watching Game of Thrones ...

Tue, 21 May 2013 21:51:20 +0100

I’m watching Game of Thrones

23 others are also watching. Game of Thrones on GetGlue.com

I just unlocked the I’ve Gotten Hairier sticker on...

Tue, 21 May 2013 21:51:20 +0100

I just unlocked the I’ve Gotten Hairier sticker on GetGlue

73921 others have also unlocked the I’ve Gotten Hairier sticker on GetGlue.com

You’re watching a lot of comedy. Have you thought about taking a break? Maybe taking a shower or getting a haircut? No? OK, you can always head back to YouTube.com/ComedyWeek for more new comedy. Share this one proudly. It’s from our friends at YouTube.

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