A favourite quote and a way by which to approach life.

Today is the tomorrow that you worried about yesterday.

Wednesday, 14 January 2009

Neglect

I've neglected you all for the past 8 or 9 days. Sorry. I have no valid excuse. I could complain of tiredness and lethargy (which are actually being looked into by the docs as possible hypothyroidism, because there are also a number of other symptoms present associated with it), but that'd be boring. Er, really all I can say is sorry, so .... sorry.

7 comments:

Graham said...

I have brittle asthma type one and eat steriods like sweets. I too am a OU student and a christsian. I also have a dog who sends my consultant up the wall but apart from my wife and daughter he is my rock. I enjoyed you blog - keep it up.

warmest Regards,

Graham

BeckyG said...

Hi Graham,

Thank you for introducing yourself and telling me a little about yourself. Apparently only about 1% of asthmatics are brittle (although the term is often over-used), so I always find it kind of nice/reassuring (not sure what the appropriate word is) to 'meet' a fellow brittle. It's a tough condition to live with, isn't it? And so few understand the realities of brittle asthma, as opposed to non-brittle/'standard' asthma.

I know what you mean about eating steroids like sweets. Where are you up to with them at the moment? I'm struggling to get them down much after my last hospital admission, but in the meantime I'll munch on them like I'm supposed to :o/

So what are you studying with the OU? And how long on the route to your degree are you? I don't know about you, but I've found the OU fantastic for flexibility and understanding regarding my health needs. I hope you're having a similar experience.

Again, thank you for your comments, and for telling me about your position. Thank you too for reading.

Becky.

Graham said...

Thanks. Yes, it took eight years and five on steriods before they said it was brittle type one. I started doing law with the OU and failed my last exams due to ill-health therefore i am doing a course without an exam this year to get an open degree. They have given me a diploma in law and a professional certificate in youth justice.

I was given an academic assistant under the disabled syudents allowance which helped me a lot - 15 hours a week at 3 hours monday to friday.

As for the steriods I am generally on 10mg to 60mg daily and because I have started having problems with my bones I am due to start methotrixate in June for a three year trail under professor whyte in sheffield.

At present I am trying to sort out my benefits and I have put in a claim for DLA. It seems an open and shut case with Nurse: GP and consultant backing my claim but I have heared that they are a law onto themselves. How have you found them?

It's good to hear you are a christaian I will pray for you. Please add a prayer for my family.

Warmest Regards,

Graham

BeckyG said...

Hi again Graham,

Good luck with the OU course that you're doing at the moment. It's certainly not easy studying for a degree when you have the added 'challenge' of chronic ill-health, but I've always found the OU very supportive. Great news on the diploma! :oD

Re the steroids: are you on anything to protect your bones? I take risedronate once a week to help against the osteo side-effects of the pred, and although my bone density is falling, it's been slowed. I have my bone density checked every two years though, just to be sure. I hope you have regular bone scans too ... but I guess you must do if they've found out you're having problems now. Good luck with the methotrexate. You may have read that I was on it for about a year, but ultimately my cons didn't think that the limited benefit I was getting from them warranted the risks. I was hugely disappointed (disolved into tears on my consultant when he took me off it), but I understood his reasoning, and knew that he'd always been wary of the methotrexate because of it's potential side-effects. Anyway, good luck to you with that, and I hope you have a good result from it.

I hope your DLA claim goes through with no problems. I have to say that I've had horrendous problems with them before, despite backing from my GP, my consultant, other health professionals involved in my care, and medic friends. My consultant even wrote a letter saying that he was a national specialist in his field, has held national positions in the treatment/care of asthma, that I have the worst asthma any doc is ever likely to come across and that if they don't give me DLA then he doesn't know who it's for! I was still turned down and it ended up going to tribunal. Thankfully the chairman of the tribunal saw that whoever had assessed (and reassessed) my case had ignored the evidence and quickly found in my favour. There was a representative from the DWP at the tribunal and he looked terribly embarrassed (quite rightly!). The chairman seemed fairly horrified that my case had got as far as tribunal, and was shocked when I told him what I'd been told of my prognosis. Anyway, ultimately I 'won' and was awarded DLA indefinitely. One piece of advice - get someone experienced in filling out the forms to help you (welfare rights are great). They seem to have a system where they turn most people down on first submission of applications, but don't give up if this happens to you. Ask for review, and if necessary take it as far as tribunal, but again, get someone experienced on board. You can contact people like Welfare Rights at any time along the way, and they can give both practical and emotional support throughout the whole process.

Thanks for your prayers, and I'll certainly keep you in mine.

Becky.

Graham said...

I am lucky that being male my bones can last a bit longer than yours. I am on vitamin D and Calcium at present and I am due a bone scan next week (annual check). The methotrixate is the last chance in many respects because my body adapts to steriods to the point that the steriods do not seem to work any more. Professor Whyte is one of the top researchers and what she has told me is that they have found that after 2 years on the stuff my symptoms shouldI ease up.

The DLA is backed by my consultant she has told them that I am a right off - worse case ever and used their own guidelines to say it's brittle: Step 5 and is having life threatening attacks daily. I will not bore you with the time my wife went to the loo and I had an attack in a resturant and some nut tried doing some wild hold and squeeze so i would throw up whatever was stopping me from breathing lol. Thank God she came out in time since he was becoming more destressed than I was - medic tag a must lol.

Thanks about the OU stuff. Yes they are really grIeat. I thing you chose a good subject considering your blog. It's great!

Thanks for the prayers. I will keep you in them. Maybe you can form a prayer circle for brittle asthmatics where we have each others name so we can pray for our intentions especially if someone is very ill.

God bless and hope the cat is OK.

Graham

Graham said...

Just to let you know I was awarded higher moility and care. I am over joyed because I can now pay off my debts my condition has caused.

BeckyG said...

Graham, that's great news! I'm relieved for you and thank you for letting me know.