CF | Sinus Woes

cystic fibrosis problems with sinuses
Freddydog being trendy and chalking his hair a nice pink ombre (may I stress that I didn't do this to him, he rolled around outside where kids had been drawing with chalk in the ground! Nothing to do with anything I'll be talking about but I had to show you because it was so funny!)

I don't think I've been very chatty lately, usually I ramble on about all sorts but I guess I just haven't felt like talking much. Mainly because I've been quite ill still because of the hot weather making it difficult to breathe and I'm still kind of recovering from the after affects of being so ill last month. It made me lose loads of weight and I've really been struggling to put it back on which is bad because a low weight means it's harder to fight off CF crappiness which means I get ill which means I can't eat and I get a bit trapped in a cycle. Also my stupid sinuses have been making it hard to breathe on top of having rubbish lungs and I get constant headaches (like it hurts to even fill in my eyebrows...I told my doctor this and he said 'I don't know what you mean but I'm sorry about that!') So headaches mean I don't feel like looking at a laptop screen so I'm so behind on commenting and reading! But I may finally have a solution, I had clinic at the Ear, Nose and Throat place last week and discovered that my sinusitis (which is very common with people with CF) is more severe than other doctors told me and that I have a deviated septum (aka the middle part of my nose is wonky) which is blocking my left side so now I know why I find it hard to breathe from there! He told me this by looking at my CT scan that I had way back in November, I've seen plenty of different ENT doctors since then so it's annoying that they didn't tell me this before then. All they did before was offer me washes and nose sprays which I've been doing for ages but they don't really work. So this doctor has put me on the list for surgery to clear everything and straighten out my nose which won't cure my sinus problems but might ease the symptoms which sounds good to me! However I don't think my CF doctor is too keen for me to have surgery, especially as there's no guarantee it'll actually work, so she's trying to get hold of a new nebuliser machine for me which is supposed to deliver drugs to the sinuses as well as the lungs to see if that helps. We're not sure what will happen yet but the list for surgery is loooong so I'll be waiting a while. I just know something needs to be done because it's giving me constant headaches, toothaches, eyeaches and faceaches and it's driving me a bit insane now. Plus I look like a weirdo because I'm constantly massaging my face to stop the pain haha. 

God I sound like a right complainer! But you know how I like to keep you up to date 100% truthfully about the ins and outs of living with CF otherwise this blog wouldn't be a very useful account of what CF is really like which is one of my main aims of blogging! In more exciting news though I finally had my first driving lesson last week and LOVED it. Cannot wait for my next one, can't believe I was so scared before! 

Well that's what's been happening with me and CF lately! Hope you've been well, I'm going to try and be better at catching up with my bloglovin' feed!


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28 comments:

  1. Sorry to hear you've been feeling so bad recently, I hope things improve soon! These sinus problems sound like a bitch, I think you're doing a really good thing by being completely honest about it on this blog though - it doesn't sound like you're complaining at all, and I think it's great that you're making people more aware of the problems of CF.
    Best wishes!


    Helen xx
    uhhelsyeah.blogspot.co.uk

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  2. Sorry to hear you've been feeling so poopy hun :( I really hope things pick up for you soon! <3 and meanwhile you complain all you like! I think you're doing so awesome at letting people know about CF. I really didn't know much about it before I started reading your blog so you see! You're already making waves gurrl :)
    PS Freddy looks fab in pink xxx

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  3. sooo cute!! ♥

    xx

    http://dotsandlaces.blogspot.com/

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  4. Aaww bless you, I hope you find a solution to the sinus problem! I had no idea that it was a part of having CF. I love Freddy's new look, although he doesn't seem too impressed in the photo haha xx

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  5. My dear Josie.

    I (hopefully not only I) am pleased that you share your difficulties and all what you're living through. Where in our time, if not on the Internet, we can find the support that is so necessary right now?

    I very much hope that you feel better today. I'm so sorry that you can not take a deep breath and feel free to breath..so sorry.

    Same as you I can not stand the hot weather. I'm usually faint during hot weather and heat..so when it's hot I need to be with someone who knows this "error". Otherwise nobody will help me. It is evident we are special and should live at the North Pole :)

    I hug you as tight as I can! Good luck honey! Have an amazing day ♥

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  6. I hope your sinus' get better soon, I can't imagine what that's like having aches all the time in your face! Complain all you like - as little miss katy said below - you're spreading the word about CF, i'm sure a lot of people didn't know what it's like day to day! I know for certain that my next charity fundraiser will deffo be for CF :) x

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  7. Reading your blog always puts things into persepctive Josie! I'm so sorry you're feeling this way and I hope everything gets sorted. Whether that's with surgery or the nebuliser!

    Hayley

    Water Painted Dreams xo

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  8. Josie, I hope you are feeling better soon! You know you are an inspiration for many people out there including me :) xx

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  9. Haha, Freddy looks so cute! I hope you start to feel better soon. My mum had that op, I'm almost certain I need it too because I've never been able to breathe out of one side of my nose! Sending virtual get well soon hugs!

    Tara xo

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  10. Really sorry to hear that you haven't been very well, really hope you start feeling better soon! At least you have Freddydog's chalk antics to cheer you up, he looks so cute!

    The Velvet Black // UK
    Style, Beauty & Lifestyle Blog

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  11. Sorry to hear that you haven't been feeling well, I hope everything gets sorted soon! On the plus side, I am loving the pink ombre haha!!

    Holly xx

    holly la beau

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  12. Hi Josie, this is your space to complain as much as you want, you have the freedom to and hopefully by writing out your feelings and emotions, in some way it will help you to deal with it all. I pray you feel better soon hun

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  13. Had to chuckle about the doctor not knowing about filling in eyebrows. I'd be pausing the appointment to explain the importance of brows to them! Hope this isn't ignorant to assume but I guess you have an excuse binge on Dominos and all that good stuff to try and put on weight?! Well I hope you get your nebuliser machine (not least of all because it sounds like some epic space device) because I can't even imagine what an eyeache feels like :o



    Jade | The Jade Aesthetic

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  14. My sister's husband had that operation and he was in and out in a day, so if you do have to have it, hopefully you will be on the bend quickly. The only bad thing wasa he had to wear this weird nose hammock thing as a dressing, seriously funny.

    I am sorry you have been so poorly, but having been following you for a few years now i know how strong and positive you are.
    Gems x

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  15. Ah, that's a lot of stuff to deal with. I hope one way or the other things get easier soon. Freddy is so cute, like a marshmallow on legs! x x x

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  16. So sorry to hear that you have been so poorly Josie. Let's hope the nebuliser machine works and that you are on the mend soon. And you are most certainly not a complainer, but in fact, very brave - sending lots of love! x

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  17. Ahh he looks sick with pink ombre!! Good you finally got an answer from a dr! Hope you feel better soon. You do not sound like a right complainer! It's good to write about something some people otherwise wouldn't know anything about :) and the humour you include in these posts! You could actually write a book the way you word things is so funny and sarky :') xo

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  18. YAY to driving! i'm on my eighth now? great fun. Freddy looks incredible, so pleased to see him looking pink haha! sorry to hear you're not so great right now, i've heard of the septum thingy, maybe you should just get a piercing like me?! hope you get a little better soon! rant away in the mean time! xo

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  19. Rubbish chick, get better soon. How cute is freddy, aren't dogs the be for keeping you company when your sick
    Lauren
    livinginaboxx

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  20. Thanks for sharing Freddydog he rocks the pink hair if done in error. Sorry that you are feeling poorly, it sucks when everything hurts and is an effort. You complain away if you cant complain on your own blog where the hec can you. I find float tanks do wonders when I feel crappy, the salt water, quiet and relaxing for a hour bliss. Maybe finding something that makes you relax. Much love Lucy x

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  21. Firstly I am so sorry to hear that CF is being such a bummer!! This weather is definitely making it more of struggle. I am so pleased that you enjoying driving it does feel amazing :) Secondly Freddie looks so on trend right now ;) Hope the headaches start to ease soon xxx


    www.lulabelloves.com

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  22. I am really sorry to hear about your situation Josie... I hope things will soon get better for you :)
    xo
    Anastasia
    http://natbeesfashion.blogspot.co.uk/

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  23. I hope you feel better soon, I think it's great that you're sharing all this on this platform, I don't think that it's complaining, I just think that you're being honest which is the most important thing! Before discovering your blog I had no idea what kind of health problems CF could cause, but now I have a better understanding of it. I also have a slightly deviated septum, although I've been lucky enough not to experience any breathing troubles.Best of luck with it! & well done for the driving lessons, I should probably start driving soon! & Freddy is adorable :3 Love, Summer xx

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  24. Sorry to hear you've been feeling rough! But don't feel bad for complaining! It's your blog after all and I know I like how real and educating this can be. If you want to portray CF in a real light, then keep doing what you are doing because you're awesome :) xxx

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  25. Chantele Cross-Jones14 August 2014 at 01:58

    Hope your feeling better! He looks kinda cute with the pink highlight! hehe!

    Enter the Two Hearts One Roof August Giveaway

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  26. I'm so sorry to hear you're still feeling pretty rubbish :(
    I have a super deviated septum too, except mines really visible from the outside as well, it's such a pain when I get a cold/swollen sinuses as the side with the smaller passage (also my left!) gets soo swollen & achy & makes that whole side of my face throb. I can only imagine it must be even worse for you when it's constant *hugs*. It's half the reason I want mine fixing, as well as to obviously straighten it out so it doesn't look crooked. They said I speak really nasally too, and that when I get it fixed my voice will probably sound quite different as well! Hah.
    PS: Love Freddy's pink ombre! ;)

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  27. Sinusitis is a real bugger, hope you get some relief soon. In the meantime massage your face away and complain all you like, sometimes it helps! Poor old Freddy too, that'll do nothing for his manliness but he looks faaaabulous!
    M x Life Outside London

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  28. just catching up with your posts! Sorry to hear you're not feeling well :( I've had sinus problems a lot in the past and it sucks so it must be even more crappy for you on top of other stuff :( hope you're feeling better soon & also, loving Freddydog's new look even if it is accidental hahah! xx

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