Went to the hospital today to finish my IVs even though I technically finished them on Saturday. My fev1 is up to 42% and fvc is down slightly at 59%, but fev1 is the most important and its gone up and is back in the 40% range so I am happy!
My weight was 53.5kg, I don't get it! How can I put on and lose 3kg in 3-4 weeks? Its crazy, I think I am going to stop paying attention to my weight, its like its on a yoyo! I haven't had any supplements for weeks, I just couldn't be bothered making them when on my IVs, maybe I'll start them again after my holiday, I mean who wants to put weight on before a holiday?!
The best news of all is that I don't need oxygen for my flight! Apparently my blood gases fell to 7.3 and 7.4 is the bracket they use, so I am still borderline and therefore only need oxygen on long haul flights. I rang BMI Baby yesterday to find out what I'd need to do if I did need oxygen, I was told it was £100 per flight (so that would be £200 as I have a flight there and flight back) plus £30 for medical clearance! I really do not know how they get away with it, I was so angry I cried afterwards because if I needed oxygen there was nothing I could do about it and they know it! It's taking advantage and I think it's disgraceful. It does not cost £100 to supply some oxygen for a 2 hour flight. Whats medical clearance? I'll tell you what it is, it's them sending my doctor a fax for the doctor to fill some details in. From now on whenever I book a holiday I shall make sure the airline provides free oxygen or the charge is reasonable. I don't know when I am going to stop being borderline and need oxygen on short haul flights and I won't let companies take advantage of my illness! Anyway now this is over I can just look forward to my holiday, without any worries!
This morning a lady came around from the council to check our second room is been used a treatment room. This means I can get a discount in our council tax, all my IV stuff is still in there plus my physio table, so she had a quick look and said that was fine.
I fear I may be seeing more assessors regarding benefits etc after the Budget yesterday. Everyone on DLA (new and current) is going to have a medical screening by 2013 apparently. This has worried me as I rely heavily on my DLA, it forms part of my income to help pay the bills, mortgage etc. I know I am not a fraud and people keep saying 'well if you are genuine you will be OK' but people can be very naive. Disability is whatever the government say it is, meeting with someone for an hour or so doesn't really give a fair few of all the problems someone with an unseen disability like me has to face. If I lost my DLA or it was reduced, I would possibly have to go back to work so we could stay in our house. This would have a negative impact on my health and help it to deteriorate quicker, I've tried working, I'd love to be able to work and I still do work a few hours a week (which tires me out!), but I know from experience that even working part-time affects my compliance, energy and overall health. So yes I am a tad worried about these so called assessments! But I also agree that there are loads of people on benefits who are not disabled or ill and they need to be made to go back to work. So it's a catch 22 really! However I'll worry about it when the times comes and have faith in the system...!
Subscribe to:
Post Comments (Atom)
.JPG)
5 comments:
glad your oxygen stress is out the way for now, i agree these companies are robbing us and we are being punished (as if we don't suffer enough) for a genetic lottery that we unfortunately lost! its crazy :(
i find my weight can flutter by 3 or 4 kg from one DAY to the next, i hate being weighed as no-one seems to believe this could possibly be true and i must be neglecting myself if my weight has gone down from what it was at the end of one clinic, to the begining of another when inbetween i would have eaten etc on the first day anyway! :S all very confusing and frustrating.
anyway like i said glad the holiday oxygen stress is over and done with, hope it goes fabulously :) look forward to seeing photos?!
xx
My weights the same and sooo annoying because I always get weighed in the morning and by the evening I've gone up about 5 pounds lol, but they never believe me!!
Totally agree with the oxygen thing, Thomson, first choice, BA and virgin are all free :)
Also worried about the benefit thing, I had to have a medical assessment for my ESA and it was suprisingly okay, went through about 3 hours of questions lol, but totally went into as much detail regarding everything. I wouldn't be too worried hun, they want people who can work for example I know a boy trying to claim sick pay (not sure what its called) for having diabetes, saying he can't work?? It's people like him they will target (I hope)..
Anyway, hope you have a fantastic holiday, congrats on your lf and weight increase and yay for not needing the oxygen!! xx
I think the NHS should fund if not pay for oxygen if you need it on a flight. Also, you're right to get everything you entitled to from the government. They don't know what they are doing half the time.
The DLA thing is very stressful but it should take ages to put in place - also likely to start with new applicants. I don't think you will have any problems claiming though xx
Oxygen - Yes, they take the piss, no doubt.
Benefits - What concerns me is that on the CF Trust website they say that the accesors have often ignored Consultant letters. I mean, if they don't listen to the experts on our condition, then what chance do we have? Plus, everyone knows that the benefits agency can sometimes be like talking to a brick wall.
Post a Comment