Very Scary Times......

Emzilla

June Earnings

£32.87 - Prolific
£5.00 - Amazon voucher from Swagbucks
£11.50 - Panelbase
£3.00 - Pinecone
£50.00 - Rebate from Car Insurance
£69.59 - Textbroker
£30.00 - Amazon voucher from Focus Group

£201.96

Hi everyone. I am still here. I meant to just have a week off, but it ended up being two. I had to deal with some health issues last week, which involved a lot of phone calls. Nothing serious, the opposite in fact. I've struggled to gain weight for practically all my life, but have put a lot on thanks to the CF drugs Orkambi and Symkevi. They are also the reason my health has been so stable for the past year and a half. However, I have now gained so much weight that I am officially on a diet!! I need to lose around a stone, so I have started healthy eating big time. I've had to cut out the sugary drinks and fatty foods that I've grown up with, being told I need to have them to gain weight. I've replaced them with diet drinks, I've got my water bottle that tells me how much to drink in a day, and I've started eating fruit and veg. I've got a healthy shop coming on Wednesday, and am determined to lose this weight. We also purchased an exercise bike from Gumtree on Saturday, so I'm aiming to start off with 5km a day, split into morning and afternoon sessions.

Another reason for the health kick, is that the miracle CF drug Trikafta (now known as Kaftrio) has been approved in Europe, and is just waiting to be signed off. There are also rumours that the NHS are poised to strike a deal for it, so it could be that I could be taking it by the end of the year. The results that people have had on this drug are amazing. Some say it's like they don't even have CF anymore. I'm not expecting that to be the case for me, as my disease has progressed too much, but I do believe it could be the push I need to get myself off oxygen. I can't tell you how amazing that would be. I'd be able to up my hours at work, get more exercise and even go on holiday (post pandemic obviously!!). So I want to get myself in the best position possible health wise to make a real go of Trikafta once I get my hands on it.

In other news, I got paid for the focus group I did on tomatoes (would love some free tomatoes now for my health kick!!!), so I have managed to reach £200 for this month. My credit card is still at the same amount, as I paid off the interest that was added on, so I need to try and get cracking with that again. I do want to start earning again for July, but I might not be able to be as consumed in it as I was during April and May.

Sorry for the ramble!!

Emz xx

beanielou

Great health news  xx

doingitanyway

Delurking to say I hope you get the drug and it adds to your quality of life.
Good luck with the weight loss.

jwil

Good luck with the weight loss.

I hope you get the drug, it sounds amazing!

Chrystal

jwil said:

Good luck with the weight loss.

I hope you get the drug, it sounds amazing!

What @jwil said. 

Emzilla

Thanks for your messages everyone. I'm pleased to say that the NHS announced a deal had been made for Kaftrio yesterday, so my doctor will be able to prescribe it from the first day it's officially on the market, which should be in around 2 months time. I was so elated yesterday, as were a lot of other CF patients, as we thought it was going to be ages before they agreed a deal, especially in the current climate. This is what I have been waiting for. I held off going on the transplant list for 2 years because I knew this drug was around the corner. Once you have a transplant, this drug is no good for you as it won't help the transplanted lungs, and those new lungs have a limited lifespan too, they say around 5-10 years, but I know plenty of people that haven't lasted that long. I'm hopeful that this drug will give me a good number of years before I need to think about the transplant route again. I will hopefully be able to come off the oxygen, say bye to the transplant hospital in London, and have a much more normal life.

My diet is continuing. I started it officially on Friday last week, and I have lost a kilo since then. I've got around another 6-7 left to lose before my BMI is the optimum level for someone with CF. Not too skinny so that I can't fight off infections, and not too fat so that my lungs have to work harder. Once I get to that level, I can introduce back in some unhealthy stuff, but just not as often as I used to eat it!!

Money aim for the month, as I'm more determined than ever to pay off debts so we can move next year, is to get the card down to under £1,400. It's also my nephew's birthday on 1st August, so I need to get more Amazon vouchers for his gifts. We're also listing lots of stuff on eBay at the moment to try and clear our clutter, which I think will be an ongoing thing over the course of this year.

Be back later to start July off with some earnings.

Emz xx

Emzilla

July Earnings

£5.06 - Prolific

£5.06

Paid £5 off the card, so the balance is now £1,705.44

Emz xx

beanielou

What awesome news for you.
Hurrah     xx

Chrystal

Brilliant news about the new drug. 

jwil

So pleased for you