Fresh Starts and New Chances...

beanielou

Emzilla wrote: »

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!!

:dance::dance::dance:

Good: :T:T

jwil

Glad the lung function is improving

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

Hope your rash & the itching clears up really soon.
Take care Emz.

Emzilla

:mad::mad::mad::mad::mad:

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

So sorry to hear that Emz.
Hope that the antibiobics help really help soon.
Take care

jwil

Hope it clears up soon Emz x

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

Fingers crossed you start seeing some improvements soon x

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