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  • FIRST POST
    • Emzilla
    • By Emzilla 21st Nov 18, 3:36 PM
    • 3,446Posts
    • 12,991Thanks
    Emzilla
    Very Scary Times......
    • #1
    • 21st Nov 18, 3:36 PM
    Very Scary Times...... 21st Nov 18 at 3:36 PM
    Hi everyone

    I've been thinking about whether to start a new diary for a little while now, but decided it would be good to have somewhere to write about everything that's happening at the moment. I've been on these boards for a long time and have got friends on here, even if I haven't been posting that regularly this past year.

    So, as some people will know, I've got Cystic Fibrosis. I've had a bit of a bad year health wise and have been on oxygen since May. I became ill around the middle of October and was admitted to the high dependency unit in hospital.

    Things got very bad, so bad that they had "the conversation" with me about the very real possibility that I wouldn't make it. It looked very bleak for a day or so, but I gradually improved. Basically, my lungs were struggling to get rid of the Co2 and they were slowly getting poisoned. I was on a Bipap machine (to help me breathe) pretty much 24/7, with just 30 minutes off it so I could eat and drink. They eventually weaned me off the machine during the day and I was just using it at night.

    I spent about 1.5 weeks on HDU and then another week on my usual ward before they let me go home. It has been agreed that I need a lung transplant as my lungs just aren't coping as well as they were. I'm on quite a bit of oxygen now, which is still allowing me to get out and about, and I'm using the Bipap at night, to try and avoid getting into that state again. I've been for my first assessment for the transplant at Harefield in London, and I'm waiting for my overnight assessment appointment, which will be at some point in January. After that, I will hopefully be on the transplant waiting list.

    It's all very very scary, but I'm just glad that I'm still here at the moment!! The name of the game now is just keeping myself as healthy as possible so that I can get my transplant and some shiny new lungs!!

    I've been off sick from work for just over a month, and I suspect I will be off sick until I've had my transplant and recovered from it. Not great for the bank account, but my health is more important than money. I'm on SSP right now, which is better than nothing.

    Now that I'm out of hospital, I'm going to try and do some extra bits online to bring in a few pennies. Don't worry though!! I won't do too much and it'll just be things online when I'm just watching TV or doing my nebulisers. My health is my ultimate priority and I won't do anything stupid to jeopardise it.

    Emz xx
Page 9
    • SSDD23
    • By SSDD23 29th May 19, 8:37 AM
    • 1,540 Posts
    • 4,862 Thanks
    SSDD23
    Good job with the cleaner savings, that's a lot of money each week if you weren't happy with the work! That'll give you a nice cushion in your budget

    x
    Debt Target #08 - 0/489.06 (0%)
    Debts busted: 7/10
    NSD Target: 4/15
    Annual Car Costs Fund: 218
    • Emzilla
    • By Emzilla 4th Jun 19, 7:55 AM
    • 3,446 Posts
    • 12,991 Thanks
    Emzilla
    Need to stop these long periods when I don't post. I am so much more focussed and disciplined when I post on here. Was a bit busy last week as it was half-term and I did a lot of stuff with the kids. I've got a nice quiet week this week though as OH went away last night to Greece for a week with his mate.

    Cleaner is currently here doing my penultimate clean. Will be nice not to have to plan stuff around having to be in for the cleaner soon. I'm going to give her the money for the next two weeks so I know that's all paid for.

    Been slacking off with the money making. I started the 1k challenge 3 weeks ago and I've only got 58.35 (added another 5 Amazon voucher from Swagbucks since I last posted). I know I can do better than that!! I would like to be over 100 by the end of the week, or at least be waiting for that amount coming in.

    Emz xx
    10 a day in August - 58.57/310
    • jwil
    • By jwil 4th Jun 19, 4:46 PM
    • 11,077 Posts
    • 40,505 Thanks
    jwil
    Good luck with it all Emz xx
    "If you can dream it, you can do it". Walt Disney
    • Emzilla
    • By Emzilla 8th Jun 19, 11:11 AM
    • 3,446 Posts
    • 12,991 Thanks
    Emzilla
    Okay, so I've probably not been quite as productive as I should have been this week, however I am nearly there:

    Received - 18.30 Prolific and 2 Love2Shop vouchers from the Post Office surveys

    Pending - 3 Pinecone, 5 Amazon Swagbucks, 11.60 Panelbase and 5 voucher from Post Office surveys.

    Which takes me up to 103.25 when they are all received

    Emz xx
    10 a day in August - 58.57/310
    • jwil
    • By jwil 9th Jun 19, 2:08 PM
    • 11,077 Posts
    • 40,505 Thanks
    jwil
    Well done
    "If you can dream it, you can do it". Walt Disney
    • Emzilla
    • By Emzilla 10th Jun 19, 3:53 PM
    • 3,446 Posts
    • 12,991 Thanks
    Emzilla
    Good day in terms of money. I'm now up to 83.65 received and 56.33 pending. I received my 5 Amazon voucher from Swagbucks and I am waiting for:

    3 Pinecone
    5 Swagbucks (redeemed today)
    5 Post Office
    11.60 Panelbase
    11.73 Topcashback
    20 Focus Group (30 minutes that I did this afternoon)

    So received and pending is currently 139.98

    I've spent a bit today though. I'm having to replace a lot of my clothes since I've put on weight. I'm trying to do it as and when I can get money off. So I've ordered a pack of knickers from M&S (Too much info? - 8 originally, but cost me 5.44 after an offer and my staff discount) and a top and a dress from Dorothy Perkins (25% off both, so they cost me 3.75 and 16.50).

    I've also got a couple of new pairs of jeans from my mum's catalogue. They were in the sale and cost 31 and 38, which is cheaper than my usual Next jeans of 45 and I can pay them bit by bit (no interest, don't worry).

    I was soooo tempted earlier to get a Dominos in, but have resisted and stuck with freezer food. Can't be ordering new clothes and takeaways!!

    Last day for the cleaner tomorrow, but she is already paid. I'm meeting up with my friend at the cinema again to see Late Night and then I've got a few household bits to do before OH gets home on Wednesday. I need to get the washing and ironing up together and clean my animals out.

    I've got the hospital on Wednesday morning and my OH is going to get the train and meet me there (he flies back late tomorrow night, so will stay at his mates and then make his way home Wednesday morning).

    Emz xx
    10 a day in August - 58.57/310
    • Emzilla
    • By Emzilla 11th Jun 19, 6:44 AM
    • 3,446 Posts
    • 12,991 Thanks
    Emzilla
    Cleaner has just arrived to do her last shift. I'll be quite glad when she goes actually. Nice enough woman, I just feel so awkward when she's here. Also waiting for some nebuliser drugs to be delivered between 8 and 10.

    I'm all up together with the washing, just need to iron what needs ironing and put it all away later. Might do that before I go to the cinema. Then I can clean the girls out tonight (my animals), but I need to get some more sawdust first.

    Received my 3 from Pinecone last night and I've requested a 31.60 payout from Panelbase (that includes the 20 focus group payment).

    Emz xx
    10 a day in August - 58.57/310
    • jwil
    • By jwil 11th Jun 19, 7:01 AM
    • 11,077 Posts
    • 40,505 Thanks
    jwil
    Well done on the earnings
    "If you can dream it, you can do it". Walt Disney
    • Emzilla
    • By Emzilla 12th Jun 19, 2:55 PM
    • 3,446 Posts
    • 12,991 Thanks
    Emzilla
    Hospital was a mixed bag. My lung function was 26%. I said to the guy doing it that I did 30% in Harefield and he admitted that their machines would be a bit more accurate than the portable one he was using, so that made me feel a bit better. Plus I haven't really been getting any exercise over the past week or so as my OH has been away.

    My weight has gone up again since last time, can't remember the number, but my dietician was pleased!! Had a bit of a lecture from the doctor about lung transplants being the better option etc etc, but then he is very pro lung transplants and wasn't interested in my reasoning at all. I appeased him by saying I hadn't ruled it out completely and was going back to Harefield in September to discuss it further.

    I'm going in next week to start 2 weeks of IVs off - hopefully will only be in a few days. And the best news is - I CAN GO BACK TO WORK!!! - only for 3 hours a week to start with, but I'm so excited!!

    Anyway, my total has gone up to 98.38 due to Topcashback paying out. Will try and get some surveys done tonight, but OH is back, so might not get the chance.

    Emz xx
    10 a day in August - 58.57/310
    • beanielou
    • By beanielou 12th Jun 19, 4:09 PM
    • 66,984 Posts
    • 303,150 Thanks
    beanielou
    Great news on being able to get back to work
    Lou~ Debt free Wanabe No 55 DF 03/03/14. MFW. 17 months to mortgage freedom.
    **Credit card debt free 30/06/10~**
    **Weight loss 2 stone 11 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 14th Jun 19, 7:01 AM
    • 11,077 Posts
    • 40,505 Thanks
    jwil
    Great news about being able to go back to work
    "If you can dream it, you can do it". Walt Disney
    • Emzilla
    • By Emzilla 14th Jun 19, 4:45 PM
    • 3,446 Posts
    • 12,991 Thanks
    Emzilla
    Another 7.82 from Prolific has pushed me over the 100 mark.

    I've just come back from seeing my boss and he said I can basically pick and choose my hours/days when I go back . Spent about an hour there and it was lovely chatting to people. Can't wait to go back.

    Emz xx
    10 a day in August - 58.57/310
    • SSDD23
    • By SSDD23 14th Jun 19, 4:53 PM
    • 1,540 Posts
    • 4,862 Thanks
    SSDD23
    Great result Emz xx
    Debt Target #08 - 0/489.06 (0%)
    Debts busted: 7/10
    NSD Target: 4/15
    Annual Car Costs Fund: 218
    • Emzilla
    • By Emzilla 26th Jun 19, 9:29 AM
    • 3,446 Posts
    • 12,991 Thanks
    Emzilla
    I haven't posted for ages , although I have been meaning to, just never seem to get round to it.

    I was supposed to go into hospital last week, but there were no beds available. I was waiting every day for a call, thinking "am I going in today or not" and by Wednesday, I was fed up of not knowing, so told them I'll have the IVs after Wimbledon in mid-July. I'm perfectly fine at the moment, my chest is feeling good and there's no rush, so I don't see the point in holding a bed when there is no need and they are so busy.

    Mind you, might have been good to go in this week as the in-laws are visiting. The less said about that the better (regular readers will know!! )

    I have been earning bits and pieces, but in all honesty I have completely lost track now. I'm going to forget about adding it all up and just detail on here every day what I have done in that day I think. Much simpler and I won't get myself in a muddle!! I do know that I've got 75 in my Amazon account and 25 in PayPal though, so that's good. I'll wait until the in-laws have gone and will start knuckling down again on Friday.

    Other news is I'm starting back to work on Wednesday next week. Just doing 5-8 and my favourite colleague is working that evening too, so I'm looking forward to it.

    I officially started the gym yesterday too. Met my physio there and she helped me out with what she thinks I should be doing and what I should aim for etc. She said I did well and it felt good that I've finally bitten the bullet and gone there. Won't seem so scary now, and I'm going back tomorrow. I want to aim for 2 days a week to start with. I know once I start seeing the benefits of going, it will just become part of my medical routine.

    That's about it. I'm off to the cinema this afternoon with my friend to watch Toy Story 4. Partly to stay away from the in-laws and partly because it's air-conditioned in the cinema!!

    Emz xx
    10 a day in August - 58.57/310
    • beanielou
    • By beanielou 26th Jun 19, 2:33 PM
    • 66,984 Posts
    • 303,150 Thanks
    beanielou
    Oh yes the lovely in laws
    Lou~ Debt free Wanabe No 55 DF 03/03/14. MFW. 17 months to mortgage freedom.
    **Credit card debt free 30/06/10~**
    **Weight loss 2 stone 11 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 Jun 19, 8:50 AM
    • 11,077 Posts
    • 40,505 Thanks
    jwil
    Hope the in-law visit isn't too horrendous.

    Enjoy Toy Story
    "If you can dream it, you can do it". Walt Disney
    • Emzilla
    • By Emzilla 19th Jul 19, 10:49 AM
    • 3,446 Posts
    • 12,991 Thanks
    Emzilla
    Hi everyone

    Sorry I haven't posted for ages. Been busy with various stuff.

    I went into hospital on Monday and came out yesterday lunchtime. So glad I'm out, but am feeling pretty shattered most of the time. They've upped my IVs because I weigh more now and they said my body can handle it, which I don't think has helped. So the next 11 days or so are going to be a medical blur. I started my meds (tablets, IVs and nebs) at 7am this morning and finally finished the last IV at 10.30.

    So my lung function has dropped to 24%, however I'm pretty sure that's something to do with the rooms they put you in there. It's called the Isolation ward and they are all sealed rooms where you can't open any windows and they just have a ventilation system for your air. It always makes my mouth and throat feel really dry and when I have to walk around the hospital (which isn't very often), my lungs and breathing feel a lot worse than when I'm out and about in normal life breathing normal air. I've heard other patients say that too, so I'm not too worried about the lung function drop and hopefully it will go up after my IVs have finished.

    They are putting me on a new drug, which is the next one up from Orkambi. Orkambi has done wonders for me in terms of my weight and keeping me stable, so I'm hoping that Symkevi (or Symdeko in the US) will do even more as it has given slightly better results. I'm still hoping for that amazing triple drug though. I've got another month on Orkambi whilst they wait for the Symkevi to come in.

    I went back to work for a couple of shifts before my IVs and they were fine. Felt a bit awkward and nervy at first, but soon got back into the swing of things. It was lovely to be part of the team again and I've had so many people saying how nice it is to have me back. I'm off this week and next, but am hoping to start the shifts back up again from August.

    Wimbledon was AMAZING!!! We had seats right at the front, on the side of the court, opposite the player's seats. It was a great day and everything went really smoothly with the driving up there and keeping my oxygen supply going. Even got a ride in a golf buggy!!!!

    Not much else to report I don't think. I want to get the earning back up and running again once I'm feeling less like a zombie. OH and I are hoping to go on a cruise in October. I spoke to my medical team and they think it would be fine for me to go on one and actually think it would be a good idea to have something to look forward to. We would go from and back to Southampton, so won't need any flights and there's a company that supply oxygen for cruises, so that should be nice and easy to sort out. I just want to try and earn some money to put towards it, maybe enough to pay for my oxygen and the excursions. Should be easier to keep going with the earnings if I have a target and something fun to put it towards too.

    My stomach is screaming for some lunch, so I'll post again soon.

    Emz xx
    • beanielou
    • By beanielou 19th Jul 19, 2:19 PM
    • 66,984 Posts
    • 303,150 Thanks
    beanielou
    Glad all is ok & that you enjoyed Wimbeldon
    A cruise sounds a fab idea xx
    Lou~ Debt free Wanabe No 55 DF 03/03/14. MFW. 17 months to mortgage freedom.
    **Credit card debt free 30/06/10~**
    **Weight loss 2 stone 11 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 Jul 19, 4:36 PM
    • 11,077 Posts
    • 40,505 Thanks
    jwil
    Lovely to hear from you. Cruise sounds fab!
    "If you can dream it, you can do it". Walt Disney
    • Emzilla
    • By Emzilla 24th Jul 19, 6:53 PM
    • 3,446 Posts
    • 12,991 Thanks
    Emzilla
    Can't wait for my IVs to be over. It's taking me around 6 hours a day at the moment to do my medical treatment and for the rest of the time the IVs are making me really drowsy, but I'm sure the weather isn't helping with that either. Get my line out on Monday morning and it won't be a moment too soon.

    We've decided to sideline the cruise idea until next year. There isn't a lot of choice in terms of where to go in October/November, and it would cost us around 3k (including excursions), whereas if we book more in advance for next year, I reckon we can knock at least 500-1k off that. Still want to start earning towards it though.

    I clearly haven't got the energy to do much at the moment, but I did earn 8.50 on Prolific yesterday, and I'm very impressed with their new instant payments to PayPal, plus they have scrapped the fees, so you can cash out even if it's just a fiver

    I'm glad I'll be more 'with it' before the end of the month, so I can start August afresh. I want to get some stuff done I've been putting off and will join some challenges. After Monday, I'll start making some August plans.

    Emz xx
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