#cfwa

[surferdude1979]

Stick together! 🤙🌊🤗 #scuba #scubadiving #padi #khaolakfundivers #similanislands #natgeo #ikelite #thailand #kohbon #kohtachai #uwphoto #uwphotography #natgeoyourshot #natgeowild #tauchen #buceo #plongee #photooftheday #igershamburg #igersgermany #teamcanon #teamtokina #thebarefootwalker #cfwa #wideangle #IYOR2018 #igershamburg #igersgermany #liveandletdive (at Similan Islands)

[parcacenter-blog]

#volkswagen #polo #cfwa #şanzuman Fiyat için irtibata geçiniz (Ivedik Ostim Ankara)

[pastaaaa-blog]

Hey guys! My friend and my partner are doing the HBF Run this year to raise money for Cystic Fibrosis. We are very close to CF as they both have it. Our goal is to raise $1000! So if anyone would like to donate, that would be awesome! :) thanks guys xx

[alexbronwyn-blog]

Exhausted

Last night was the worst in a while. I had some sort of throat irritant or phlegm or something in my chest/throat making me cough and cough and cough and cough.... All night! Yes ALL night no break. To the point I was that exhausted when I coughed I started crying. I tried sitting propped up with pillows - didn't work. I tried sitting up completely in school girl position with legs crossed and pillow in between me and my legs to help get comfy. Helped for about 15 mins and then the coughing continued. What next?! Still crying in exhaustion. Take three puffs of my steroid puffer. Didn't work straight away but took about 10 minutes for to settle completely. Sigh I was finally comfortable and able to close my eyes and fall asleep. A total of maybe 4 hours sleep comfortably I had last night. The late morning being the best as I'm calm. Having a combination of CF and asthma sucks. You can ever tell which one it is sometimes. Can't wait that for Orkambi when I won't have to go through this anymore.

[alexbronwyn-blog]

So last night I got to go out with my friends. I have not been out in at least 4 months or so. I have to take advantage of moments like these because I'm not always well enough to last all night or even be able to go out in general. Last night really hit the spot. I feel a lot happier that I was able to get out there and socialise with people I don't know and make new friends. I enjoyed every moment including dressing up! Even though I'm sick I have moments when I'm worse so taking this opportunity now while I'm feeling good for 'me time' was much needed. It's these little things that matter the most to me. Enjoy life and live it well🙏🏼

[alexbronwyn-blog]

ｌａｕｇｈ.

Laughter is the best medicine. It honestly is.

For me it’s the best medicine because it makes me happy and it works like chest physiotherapy to help with my CF! It’s great.

Don’t take life so seriously, sit back, enjoy those moments and when something is funny or stupid laugh at it or with it. The more laughs the happier you will be. It will also de stress you too.

Bring on more laugher! Ha ha ha ha ha

😂😂🤗

[alexbronwyn-blog]

Behind closed doors

You probably look at me and think “she looks fine” or “she’s better” but you have it wrong.

Everyday I’m still battling the same disease.

That disease: • damages my lungs that’s irreversible • constant coughing of mucous and blood • pleurisy • pain, headaches and dizzy spells • IV and needles • X-rays and ct scans • antibiotics, vitamins, salt tablets, probiotics and enzymes • stomach pain • weight loss • salty skin • always tired • can’t hold a conversation without coughing • lung capacity drops • short life span perhaps? Who knows • can’t make commitments • income troubles • the list goes on …..

I may look normal but I’m seriously broken on the inside. Everyday is different. I can have one day that better than the other and another that’s so bad I can’t do anything. It’s sudden effects too! And I can never fully commit to anything.

My health this year has truly effected me.

CF sucks. Let us pray for Orkambi approval in Australia and that it works for me so I can live a somewhat normal life.

🖕🏼FUCF

[alexbronwyn-blog]

Waiting patiently..

I am in Australia and Orkambi it is yet to be approved by the FDA and governing bodies etc.  I am hanging in there. So desperate to start.

I have always been good with my CF until this year.  I am 25 and my first admission was when I was 18! and it wasn’t even as serious as to what I have experienced now! So, this year I have been admitted 4 times! And over the last 6-7 years (not including this year) I have only been in hospital 3-4 times.  So big difference.  I have experienced the worst and the most scariest symptoms with CF, and my lungs have gone from 70% in jan’15 to now as at Sept-Oct’15 40-45%. :( I am stable but I cough blood from time to time.Not a nice experience and you have to stop physic and rest! annoying, because then your mucus builds up and you have to get onto of it before it gets worse once the blood calms down and stops.

I am keeping close tabs with updates and information regarding the approval process for Orakumbi and reading other CF patients experience whilst taking it over the in the US.  I can’t imagine my life being any “normal” that what it is now. 

So, its Thursday.  I haven’t been at work for two weeks because I have started to feel under the weather again.  It’s not major, but I did start coughing up blood again.  I have posted the photo on my blog.  In total I believe I have coughed about a shot glass full. I went to my DR and had x-rays and bloods done, all coming back clear. So I guess from all the lung damage that has happened this year, has taken it’s toll and it’s irreversible, which means from time to time I will burst a vessel and bleed.  I’m ok with that.  I have to be. It’s now “normal for me”. 

I am so tired from this happening.  I am tired from my CF. Come’on Orkambi!!