Tag Archives: Cystic fibrosis

A month full of awareness!

May is Asthma Awareness month and it is also Arthritis Awareness month… So I’ve decided that I will do 2 question and answering session. My inbox has gotten pretty full with questions, many of them that are quite similar, so I figured that I would write 2 posts answering these questions. One post will be about asthma and where I will answer the questions that link to asthma… And the other will be about my joints. I don’t know if I have Arthritis but I do know what it’s like to deal with stiff and swollen joints and chronic pain so that will be the main focus of that post…

So why am I doing this? Well, I want to show people what it’s like to live with asthma and bad joints and I want to help people to understand how these conditions can effect people’s lives.

This month is also Cystic Fibrosis awareness month which I totally acknowledge and I will try to get a blog post for that but no promises guys!

…98 …99 …and 100

…98 …99 …and 100! That’s right readers I have finally reached 100 posts! It has taken me almost a year to get to 100 posts when other can get to 100 in a few months but I still think that this is a pretty special moment.

I was thinking, just the other day about how this blog has helped me connect with so many inspirational people! At this time last year I would have never thought that I would regularly use social networking sites to talk to people with chronic illnesses. To chat to someone about their condition, learning more about what it is like to live with diabetes, CF, brittle asthma, stills disease and many others. But most of all, I have got to know so many new friends, who have so much in common. I have stumbled across a community that has a space for everyone, and a community that is always there, 24/7, from all nationalities.
A community who is there, no matter what.

I have always said that I can’t stand it when people are ignorant of an illness, and the purpose of this blog is to raise the profile of some of these conditions, and also to tell the tale of my chronic conditions. I’ve made this blog personal, and through it, so many people have reached out to me. I am so, so grateful to everyone who has supported me, and MyLungsMyLife to our 100th post and I hope to continue to 200 and beyond… That was a little bit of a Buzz Lightyear moment then.

Guest Post: Shannon, living with Cystic Fibrosis and CF related Diabetes

[editors note: I would like to welcome Shannon to MylungsMyLife. I met Shannon over twitter a few months ago, and I have been talking to her a lot about how CF (AKA cystic fibrosis) and Diabetes, and since this week is Cystic Fibrosis Awareness week, it seemed like a good time to ask Shannon if she would like to go a guest post for me. So thank you Shannon for writing this post for me!]

Hi, I’m Shannon. I am 13 years old. I may seem a normal teenager right?

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Well, I’m not really… I have Cystic Fibrosis and Diabetes. This week it’s Cystic Fibrosis Awareness week in the UK (24-30 June).

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Cystic Fibrosis(CF) is a genetic disease, it affects your respiratory and digestive systems the most. People w/CF take loads of medications, nebulisers and some use the vest… Most CFers have one-three stays in hospital a year, my mum says I’m going in for a MOT!

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There is hardly any awareness for CF. This needs to change! CF is a life threatening disease, but honestly did you know about it before I wrote this? You might have heard of Dalton Dingus? [note: remember the young lad who I blogged about at the start of they year? Who sadly passed away at the age of 9? I wrote about Dalton here and here] Or (Peter Andre fans should know) maybe Nadine Blake? No? Thought not! This is why we need awareness, I asked all my form class. “Did you know about Cystic Fibrosis before you met me?” In my class there is 27 people in my class, all of them said exactly the same, they said “No.”
I wrote a letter to my head teacher to see if we could raise money/awareness for CF in school, still waiting for my reply!

Some people say things like;
“Shouldn’t you be in hospital?”
“I’d die if I had to take that many tablets!”
“Is it contagious?!”
“But, you don’t look sick!”
“You’re just tired.”
“You’re a druggie!”
“You have Cystic Fibrosis? Why aren’t you locked up?!”
“Shouldn’t you be dead by now?”
“You’re just attention seeking.”
“You’re anorexic!”
Yes, I’ve had them all said to me. 😞

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Organ donation is very important with CF. Many people w/CF need ‘new lungs’. People don’t realise how important organ donation is! Other people without CF need organs so you could be helping anyone! So please sign up to the organ donation register!

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How you know you have Cystic Fibrosis:

LOL!
Ps Ceftaz [note: this is an antibiotic used to treat Pseudomonas aeruginosa, which is a bacterial infection which can be found in the lungs of people with CF] does smell like cat pee! 😊

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I was diagnosed at 4 weeks old, in 1999. I wouldn’t eat or drink. My mum and dad took me back to the hospital, I had some tests and I was diagnosed, simple right? Not really. My mum and dad had to schedule all work/play around me. I had a huge, loud nebuliser and loads of medication (liquid form, of course!), as a child I hated the fluclox [note: fluclox is short for flucloxacillin, another antibiotic] I had to have, apparently it was strawberry flavour, erm no. Now I have them in tablets.

Using social networks, (Facebook, Twitter etc) I have been part of the DOC – Diabetes Online Community, and CFOC-(just guessing here, it doesn’t actually have a name:)) Cystic Fibrosis Online Community. The following people have helped me-
Twitter-
@pinger_genguin (Jenni – MyLungsMyLife)
@glucosegirly
@theGBDOC
@Navy_Kitty
@grumpy_pumper
@ninjabetic1
@DiabetesUKCymru
@DiabetesUK
Give them a follow:)

Thank you for reading,

@ShannonFurbee12 (Shannon- D, CF and Me.)
dcfandme.blogspot.co.uk

A month full of awareness!

Well lately I’ve been lacking in the enthusiasm department. I just feel so tired all of the time, I do get the occasional burst of energy, for example, when I’ve just eaten something that is packed with sugar.

I’m think my tiredness is mainly down to the massive amounts of college work I have. I have chemistry literally coming out of my ears! My exams are starting in a week with german (definitely going to fail that one) and they finish the day before my birthday on June 5th, which I’m quite pleased about.

So in a little over a months time, I’ll be 17. That is scary but I’m also really looking forward to it. I’ve been wanting to give blood for ages and in the UK you have to be 17 to do this, so I’m super excited about being able to do that. And I’ll also be able to learn to drive, which is brilliant. My provisional license came yesterday so I’m all set really, just need to book lessons, actually become 17 and I’m on my way.

I have also booked an appointment with my asthma nurse for the 17th of June. At the moment I’m really not feeling like my asthma is controlled at all. I’ve been having more attack (9 in the last week) and my lungs are just generally not feeling very good in the least. I do think that the symbicort is still helping, because when it starts to wear off I feel ten times worse but it just isn’t helping to the extent that it was.

I have also been getting loads of muscle cramps lately which really aren’t pleasant, especially when I am waking up most nights. This is also partly contributing to my overall tiredness. My friend Kerri has suggested that it could be the ventolin that is causing the muscle cramps as bronchodilators can leech the potassium out of your muscles, causing cramps (steroids can also do that). So I’m going to follow ether advise and keep some Gatorade or a Banana handy to see if these can correct any electrolyte imbalances there may be from the lack of potassium. [Thanks for the advice Kerri!]

That brings me to another thing that I am going to talk to my asthma nurse about. I am not happy with being on a ventolin accuhaler anymore. The max dose I am supposed to take is 4 puffs a day (this equates to the 8 puff limit on normal MDIs) which would normally be fine but recently I’ve been having more attacks so I can easily use these 4 puffs up and have nothing spare for later although if I do have another attack, I have no problems with going over the “limit” (I do not suggest anyone else do this or condone this behaviour. If you are needing more of your reliever inhaler than your doctor/asthma nurse has advised you take, I suggest going back to the doctor or to the hospital if it is an emergency). My friend is on bricanyl which is another bronchodilator (although it has a different active ingredient to ventolin/salbutamol). Bricanyl is available in the UK in turbohaler form which is the same as symbicort. I’m really loving the symbicort delivery device so I’m going to see if it would be possible for me to give bricanyl a try.

Any since this is my first post of May, I have to tell you that it is ASTHMA AWARENESS MONTH! And not only is is asthma awareness month, it is also Lupus awareness month, Cystic Fibrosis awareness month, Ankylosing Spondylitis awareness month and many more. I feel like all my Christmases have come at once and I am going to try and do as many awareness posts as possible!

Happy half Birthday!

Well today is my blog’s half birthday. Yes, mylungsmylife has been around for 6 months now! So as a little present, I changed my blog theme, as you have probably already noticed 🙂

I’m kind of in shock how fast these past six months have flown. I have met so many new people through guest posts; Rachel, Lizzy, Becky, Lene and Nicole. And I have met many more amazing people over twitter and Facebook, who have written/are writing guest posts for me. And other inspirational people who have blogs and Facebook pages sharing their experiences with chronic illnesses, such as fibromyalgia, cystic fibrosis, diabetes (all types), stills disease, juvenile arthritis, rheumatoid arthritis and the list goes on and on.

6 months ago I didn’t know much about some chronic conditions such as Diabetes, but now with the help of friends on twitter I am well on my way to becoming a fake person with diabetes. (This is sort of a code word for a person who doesn’t have diabetes but knows a lot about it). I am hoping to get a few guest posts up from people with diabetes very soon.

6 months ago, I was 1 month into my first year at sixth form college, no I am 7 months in and I have already completed a quarter of my full A level, which is really scary. Last week, I went to a University fair which many of the main universities from the UK went to. So I now have a room full of Uni prospectuses and I am still no closer to knowing which Uni I am wanting to go to… But I have a little while longer to decide.

6 months ago I had only been officially diagnosed with asthma for 4 months. I am still in the process of learning which treatments work best for me and I have already found that 3 inhalers are not for me. I have found that some asthma medications make me wheeze more, so they are definitely out of the picture and I’ve found that I prefer to use DPIs (Dry hPowder Inhalers) basically because when my fingers are sore, I can still take my inhaler. I am still learning a lot about asthma, and I’m still spending a lot of time googling a lot of asthma related things to try and learn as much as I can about asthma, so that I can completely understand what my GP and asthma nurses are talking about, and so that I can understand the reasons behind why I am taking certain medications. But also so I can understand asthma as a whole, I want to be able to know as much as possible about why things happen and how medication work and what the mechanism behind asthma attacks and exacerbations is.

So that is a few of the things that I have experiences through having a blog and I am certainly going to continue blogging!

Dalton Dingus Update

I feel that I owe people an update on Dalton, I did a wee post on him a while ago. For these of you who didn’t know dalton was a 9 year old lad with end stage cystic fibrosis. His wish was to break the world record for the number of Christmas cards received. I am glad to report that dalton did indeed break the world record and had 763,052 on the 8th January. Dalton got his last week.

However I have just been updated that at 7.30 last night (US time) Dalton passed away after losing his fight to cystic fibrosis. I feel compelled that I should tell you about Dalton as so many of you have been touched by this young, brave lad.

Breathe easy Dalton.

Dalton dingus – cystic fibrosis christmas world record

I feel compelled to tell you all about this amazing young lad Dalton Dingus.

Dalton is 9 and has stage 4 cystic fibrosis. Dalton has been sent home from the hospital and is now on home hospice care. Dalton’s wish this Christmas is to beat the Guinness World record for the number of Christmas cards received.

Please help Dalton fulfill his wish and send a Christmas card to this brave, brave boy.

Send cards to:

Dalton Dingus,

HC 62 Box 1249

Salyersville, KY 41465