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  • FIRST POST
    • Emzilla
    • By Emzilla 31st Dec 17, 9:22 PM
    • 3,364Posts
    • 12,742Thanks
    Emzilla
    Fresh Starts and New Chances...
    • #1
    • 31st Dec 17, 9:22 PM
    Fresh Starts and New Chances... 31st Dec 17 at 9:22 PM
    Fresh Starts and New Chances...
    Last edited by Emzilla; 21-09-2018 at 7:50 AM.
Page 4
    • Emzilla
    • By Emzilla 3rd Jul 18, 12:54 PM
    • 3,364 Posts
    • 12,742 Thanks
    Emzilla
    Home visit from a nurse just now. Lung function up 2% to 27% and my oxygen levels were 94 on nothing!! So pleased with that as the nurse said that a lot of patients were down on lung function due to the heat. Weight was down 0.3kg, but I think that might just be down to the fact I hadn't eaten lunch yet!!

    • beanielou
    • By beanielou 3rd Jul 18, 8:25 PM
    • 61,263 Posts
    • 261,229 Thanks
    beanielou
    Home visit from a nurse just now. Lung function up 2% to 27% and my oxygen levels were 94 on nothing!! So pleased with that as the nurse said that a lot of patients were down on lung function due to the heat. Weight was down 0.3kg, but I think that might just be down to the fact I hadn't eaten lunch yet!!

    Originally posted by Emzilla
    Good:
    Lou~ Debt free Wanabe No 55 DF 03/03/14.
    **Credit card debt free 30/06/10~** **Weight loss 2 stone 12 lbs **

    "A large income is the best recipe for happiness I ever heard of" Jane Austen in Mansfield Park.
    ***Fall down seven times,stand up eight*** ~~Japanese proverb.
    It starts with you, it starts from now. *** It is ok to be me.***
    ***Keep plodding***
    Out of debt, out of danger. ***Be the difference.***
    • jwil
    • By jwil 9th Jul 18, 1:44 PM
    • 9,909 Posts
    • 33,629 Thanks
    jwil
    Glad the lung function is improving
    "If you can dream it, you can do it". Walt Disney
    • Emzilla
    • By Emzilla 18th Jul 18, 7:17 PM
    • 3,364 Posts
    • 12,742 Thanks
    Emzilla
    Hi everyone

    Okay, not done very well this month.

    The Good:
    • My sister and I got enough Amazon vouchers for the Nintendo Switch for my nephew's birthday, which is now in my sister's possession
    • I was going to get him another little present from me (even though the Switch is a joint present). However, I received a competition win of a Slime Blaster yesterday, which will be perfect!! Great timing there
    • My health is still good and I'm feeling great. My weight continues to rise, although I haven't had my lung function measured again yet (next appointment 2 weeks Friday)
    • I've done well with getting quite a few freebies. Loads of bottles of Ribena, some Pepsi Max and Walkers crisps from comps. I'm also waiting for a bowl and 2 glasses from the Walkers comp. My free toiletries are going well too and I've got another perfume sample that I'm eeking out. I want to avoid buying any perfume or toiletries before Christmas
    • I've also managed to cut back spending. We've not been out for a meal or takeaway since I last posted and we've practically eaten everything we had in our freezer, with only the need to buy a few extras. Some cheap stuff from work in the evenings has given me my fatty foods for my medication
    The Bad:
    • Not stuck to my Swagbucks target
    • Not stuck to my earn 10 a day challenge
    • My Pepsi habit is still in full flow (really don't think I can shake that one)
    The Ugly:
    • I've had a really nasty heat rash on my feet and legs for the past week. And I mean REALLY NASTY. The doctor has given me 5 days worth of steroids to get rid of it, but I'm three days in and it's still raging on. Not so bad on my legs now, but my feet are so sore and itchy. They feel like they're on fire and they look like they've been badly burned, blisters and all. This isn't anything to do with my CF, which is a relief, just really bad luck on my part.
    There's still 13 days left of the month. I'm not going to set any targets, but will make more of an effort to come on here and declare the Good, the Bad, and the Ugly from each day!!

    Emz xx
    • beanielou
    • By beanielou 18th Jul 18, 7:45 PM
    • 61,263 Posts
    • 261,229 Thanks
    beanielou
    Hope your rash & the itching clears up really soon.
    Take care Emz.
    Lou~ Debt free Wanabe No 55 DF 03/03/14.
    **Credit card debt free 30/06/10~** **Weight loss 2 stone 12 lbs **

    "A large income is the best recipe for happiness I ever heard of" Jane Austen in Mansfield Park.
    ***Fall down seven times,stand up eight*** ~~Japanese proverb.
    It starts with you, it starts from now. *** It is ok to be me.***
    ***Keep plodding***
    Out of debt, out of danger. ***Be the difference.***
    • Emzilla
    • By Emzilla 26th Jul 18, 2:46 PM
    • 3,364 Posts
    • 12,742 Thanks
    Emzilla


    So after TWO doctors telling me my heat rash hadn't become infected, a third doctor told me on Monday that it had. It has gotten really bad now. My feet are so swollen, I can barely get shoes on. My left foot (where the infection is) is so red raw and extremely painful. I'm hobbling around and could only bare to be in work for an hour and a half yesterday before I was in too much pain and had to go home. Shouldn't have gone in really. I'm on antibiotics. Just hope they clear it up before my hospital appointment next week, or they might insist on IVs.

    Emz xx
    • beanielou
    • By beanielou 26th Jul 18, 6:50 PM
    • 61,263 Posts
    • 261,229 Thanks
    beanielou
    So sorry to hear that Emz.
    Hope that the antibiobics help really help soon.
    Take care
    Lou~ Debt free Wanabe No 55 DF 03/03/14.
    **Credit card debt free 30/06/10~** **Weight loss 2 stone 12 lbs **

    "A large income is the best recipe for happiness I ever heard of" Jane Austen in Mansfield Park.
    ***Fall down seven times,stand up eight*** ~~Japanese proverb.
    It starts with you, it starts from now. *** It is ok to be me.***
    ***Keep plodding***
    Out of debt, out of danger. ***Be the difference.***
    • jwil
    • By jwil 27th Jul 18, 3:11 PM
    • 9,909 Posts
    • 33,629 Thanks
    jwil
    Hope it clears up soon Emz x
    "If you can dream it, you can do it". Walt Disney
    • Emzilla
    • By Emzilla 1st Aug 18, 6:57 AM
    • 3,364 Posts
    • 12,742 Thanks
    Emzilla
    So, not an infection after all, but vasculitis!! I saw my 7th (yes, SEVENTH) doctor yesterday who finally diagnosed it. I actually got admitted into hospital on Friday because of it, but managed to persuade them to let me go home as they wanted me to stay on a ward (could have caught anything, I'm usually in a private room because of infections etc).

    They now think it's the Orkambi that they're giving me. I partly hope it's not, but am in so much pain that I'm also hoping that it does clear up. They're going to take me off it for a couple of weeks to see if it clears up. I've got some cream and some sexy support stockings to wear and I've got to go back next week for a biopsy on my leg.

    If it does clear up, then they're still going to let me give the Orkambi another try, just in case it was all a coincidence. It's a good drug and has helped me a lot, so I'm really hoping I can stay on it.

    Emz xx
    • jwil
    • By jwil 3rd Aug 18, 10:22 AM
    • 9,909 Posts
    • 33,629 Thanks
    jwil
    Fingers crossed you start seeing some improvements soon x
    "If you can dream it, you can do it". Walt Disney
    • Emzilla
    • By Emzilla 5th Aug 18, 1:59 PM
    • 3,364 Posts
    • 12,742 Thanks
    Emzilla
    Now my CF doctors don't think it's the Orkambi, so have started me back on it. Meanwhile, the rash rages on and I'm only given some relief by the support stockings, and whilst they do keep the swelling down, they itch like mad and are as hot as hell!!

    My lung function has also dropped to 21%, which could be down to the heat (sweltering in the hospital room they put me in on Friday) or me stressing about this vasculitis. So I'm being admitted a week tomorrow for some more IVs. I'll start them off in hospital and then they're going to let me finish them myself at home (after some "training"), so I should only be in a few days.

    I'm off sick from work for another 3 weeks. Will have to seriously start thinking about if it's worth me working, as it's not fair on my boss or colleagues having to constantly cover me. My boss is being lovely about it though.

    Emz xx
    • jwil
    • By jwil 6th Aug 18, 9:31 AM
    • 9,909 Posts
    • 33,629 Thanks
    jwil
    Sorry to hear it's still ongoing Emz. Hope you start improving soon x
    "If you can dream it, you can do it". Walt Disney
    • beanielou
    • By beanielou 6th Aug 18, 11:08 AM
    • 61,263 Posts
    • 261,229 Thanks
    beanielou
    Sorry to hear it's still ongoing Emz. Hope you start improving soon x
    Originally posted by jwil
    This.
    Dont worry about work
    Lou~ Debt free Wanabe No 55 DF 03/03/14.
    **Credit card debt free 30/06/10~** **Weight loss 2 stone 12 lbs **

    "A large income is the best recipe for happiness I ever heard of" Jane Austen in Mansfield Park.
    ***Fall down seven times,stand up eight*** ~~Japanese proverb.
    It starts with you, it starts from now. *** It is ok to be me.***
    ***Keep plodding***
    Out of debt, out of danger. ***Be the difference.***
    • Emzilla
    • By Emzilla 19th Aug 18, 7:23 PM
    • 3,364 Posts
    • 12,742 Thanks
    Emzilla
    Hi everyone

    Well I'm still in hospital, even though it should have been for a few days. I came in Tuesday evening, they started my IVs immediately, and I woke up on Wednesday with a swollen hand and a rash all over my arm. It got worse and worse as the day went on and my hand ended up being at least double the size. It was so painful and I couldn't go anything.

    So they took the cannula out and stopped the IVs. Thankfully it calmed down and my hand returned to normal size within a couple of days. They put a line in my arm the following day and restarted IVs, so the rash appeared on my right arm and hand, but no swelling.

    I've had a biopsy on skin to see what the problem is, because nobody seems to know. Dermatology think it's due to an infection, but my doctors don't think I'm that ill. They keep on revisiting the possibility that it could be Orkambi, but haven't stopped it. And I'm just stuck in the middle with a nasty rash!!

    I'm hoping they will let me out tomorrow to do my own IVs at home. I've got to get my "training" signed off (even though I've done it before), but I don't see any other reason why I can't go home tomorrow.

    The food here is atrocious!! Don't get me wrong, I know it's the NHS and I don't expect anything great, but just being edible would be a start!! I ordered a cheese and tomato pizza yesterday (just one of the Chicago Town ones you put in the microwave) and it was brown and rock hard!!

    Also, my room is freezing. It's like sitting in a fridge. I have to sit here in my dressing gown all day and sleep in it at night. I've got some bed socks as my feet have been like ice. I've asked them to sort it out, but all they ever say is "it's maintenance that have to deal with it".

    So I need to go home to a) protect the weight I've gained and b) prevent developing hypothermia!!

    Hope everyone else is well.

    Emz xx
    • beanielou
    • By beanielou 19th Aug 18, 9:11 PM
    • 61,263 Posts
    • 261,229 Thanks
    beanielou
    Sounds just dire all round.
    Take care of you.

    You could always order a wee sneaky Domino!!
    Lou~ Debt free Wanabe No 55 DF 03/03/14.
    **Credit card debt free 30/06/10~** **Weight loss 2 stone 12 lbs **

    "A large income is the best recipe for happiness I ever heard of" Jane Austen in Mansfield Park.
    ***Fall down seven times,stand up eight*** ~~Japanese proverb.
    It starts with you, it starts from now. *** It is ok to be me.***
    ***Keep plodding***
    Out of debt, out of danger. ***Be the difference.***
    • jwil
    • By jwil 20th Aug 18, 9:45 AM
    • 9,909 Posts
    • 33,629 Thanks
    jwil
    I hope you get out today!
    "If you can dream it, you can do it". Walt Disney
    • Emzilla
    • By Emzilla 30th Aug 18, 1:48 PM
    • 3,364 Posts
    • 12,742 Thanks
    Emzilla
    I'm pleased to say I got out of hospital last week and have finished my IVs today - got my line out this morning

    It was a bit full-on doing them myself at home to be honest. My treatment time doubled, so it was taking me around 5-6 hours a day to do my IVs, tablets, physio and nebulisers - no wonder they didn't want me to go to work too!! They also made me quite tired, especially the lunchtime dose, so I found myself having to take afternoon naps.

    I'm going back to work next week and I'm going to try 3 x 4 hour shifts to see how I get on. I think I'll be fine, as the 2 x 4 hour shifts were no problem, up until I got my vasculitis anyway. I'll continue to wear the compression socks when I'm at work, so that shouldn't flair up again. I'm actually really looking forward to going back and am hoping that being more active again will help me to feel even better.

    I've been trying to do a bit of earning online, but want to step it up for September, as we've got a bit to pay out for and I've got two birthdays (my OH's and my sister's).

    I'm waiting for a 5 M&S voucher (thinking I could get 20-30 for OH, but his birthday is a week Sunday, so I've left it a bit late) and I've got 15 in Amazon. I'm also trying to earn cash on Prolific to put towards them. I'm waiting for a 6.80 payment and have got 5.38 cleared too.

    I would like to try and do the 10 a day challenge for September and get a full month of daily targets on Swagbucks.

    Emz xx
    • jwil
    • By jwil 31st Aug 18, 9:53 AM
    • 9,909 Posts
    • 33,629 Thanks
    jwil
    Glad you are out and feeling better xx
    "If you can dream it, you can do it". Walt Disney
    • stressed.mum
    • By stressed.mum 31st Aug 18, 4:42 PM
    • 725 Posts
    • 3,281 Thanks
    stressed.mum
    Glad you are on 5he mend, take it easy with and stuff - give yourself time to recover xxxxxx
    Hoping to stick to the challenge this year!!
    Make 5 a day for 365 days - started Jan 17

    YTD 435/1785
    Cash - 415 Vouchers - 20
    • Emzilla
    • By Emzilla 1st Sep 18, 10:00 PM
    • 3,364 Posts
    • 12,742 Thanks
    Emzilla
    Thanks Jwil and Stressed.mum

    We went to visit OH's parents today as it's his birthday next weekend, but I'm working. They paid for the meal, which was good, so no money spent, except that now our petrol tank is practically empty. Also got a Greggs on the way so that I could take my Orkambi on the road (20g of fat needed with it).

    We didn't get back until 8pm, but I have managed to do a bit of multi-tasking whilst doing my nebulisers. I reached the second Swagbucks target, so day one is under my belt, and I've earned 1.50 on Prolific, plus I'm supposed to be getting a 1 bonus on one of them too.

    I started off my sister's birthday present ordering whilst at the in-laws. Dorothy Perkins have got 25% off everything at the moment, so I ordered her a dress that was 35, but was down to 26.25. I also had a leftover 5 voucher from my birthday that I put towards it, so it will only cost 21.25. I ordered on the try before you buy thing, so I've got 30 days to either pay for it or send it back (I'll try it on when it arrives - if it fits me, it'll fit her), which will give me time to earn the money on Prolific for it

    Emz xx
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