It's a nice day for a white wedding.

Well despite vowing I was not going to watch 10.30 and I was firmly in front of the TV waiting for the first glimpse of 'the dress'. Worth it, absolutely, it was stunning and after that I just had to watch the whole thing didn't I. It was so easy to get caught up in the splendour of the occasion and let's face it we are so lucky to be able to put on such a show. Which other country has such wonderful settings. Andrew came and watched a bit of it with me and asked loads of questions about the Abbey. He was surprised to find so many famous people were buried there so I think a trip is called for in the near future.

Bit of excitement for our sleepy little village on Thursday night. We were sitting watching the news when suddenly the police helicopter  (or sty in the sky as the kids call it) came over really low with the search light on, we went outside to see what was going on and a police car came screaming up the road. No idea what was going on as we decided if there was someone running around that warranted that level of police interest it would be better to leave well alone and go back inside and check the back doors were firmly locked.

I haven't been feeling at all well these last few days. I am having trouble breathing and my chest is painful and heavy and I've started retaining water in my stomach and my feet and ankles. I don't know what it is. It could just be that the Iloprost just cannot cope on its own and needs the back up of a second medication, I'm still waiting to hear if the PCT will grant funding for that, or whether it is something else entirely. My greatest fear is that I'm becoming intolerant of the Iloprost as I have done with practically every other med I've been given so far. I'm going to have to contact the Brompton next week and discuss it as I cannot go on feeling this ill. It is affecting my mood, my work and just my enjoyment of doing things. Take today for instance, I really want to hit the shops but the only way I'm going to be able to is on a scooter. I know I shouldn't moan and people keep saying using a scooter or wheelchair isn't so bad if it lets you do what you want to do but I really hate it.

Once I'd picked up my scooter from Motability I did what I always do when feeling a bit down and headed straight for Lush. Some people with lung problems say that Lush makes them wheeze but fortunately it has never had that effect on me. I spent a relaxing 30 minutes amongst the potions and lotions before leaving marginally happier and £40 poorer. Really looking forward to a long soak with a good book. After a flying visit to Maplin and Costco we returned to find my eldest had set up a BBQ. We had mini ribs, chicken satay sticks and sausages. What a lovely surprise. Tonight it is film night and as it is my turn I have chosen Moulin Rouge, I might even treat myself to a very small glass of wine.

23. Visit Westminster Abbey

Oh yes I'm the great pretender, pretending that I'm doing well

The mask well and truly slipped this week. I've been an emotional wreck, crying at the slightest sign of anyone being kind or concerned about me. I have regular dips but this wasn't a dip it was a plummet. Usually I can control myself but the harder I tried the worse I got. Scary! Hope I can pull back up again soon.

As luck would have it I've also been battling against 'authority' this week.

Why are doctor/hospital receptionists such cows? Don't get me wrong ther are some lovely receptionists out there, the receptionist at my GP's is absolutely lovely. However the receptionist at my anti coagulation clinic is an entirely different kettle of fish. This week I couldn't make the clinic due to work commitments, next week I have the same problem so I rang the clinic to change dates. My God! Anyone would think I was trying to skip bail.
"Well can't you come to the early clinic at 7.30am?"
 "Not when I have to be at the other end of the county by eight."
 After batting around every possibility she finally accepted that I just couldn't make it but before I ended the call told me she was 'making a note that I'd ignored her advice.' Oh I am so scared! Get over yourself woman, it is only a blood test.

The second battle is ongoing and is with the Inland Revenue. They wrote to tell me that I owed £384 in tax. I challenged them and today I got a letter telling me the under payment of tax came about because they were unaware that I was working during 2009 - 2010. Huh? How can that be when I had tax removed from my pay and they sent me a letter halfway through the year altering my tax code? Well this weekend I will be writing back and including photocopies (I don't trust them enough to send the originals) of these documents asking them whether they are mad or just plain stupid. My money's on the latter.

Then there's work, actually lets not go there other than to say one of my very pregnant colleagues left on maternity leave this week. She is such a lovely lady I really hope things go well for her. We are all meeting up on the 9th of May for a meal/ baby shower. Personally I have doubts of her still being pregnant by then but we will see.

22. take a turn in the Top Gear reasonably priced car.

Monday, Monday....

Well yesterday's meal was as surprising as it was delicious. Starter was a warm cheese and tomato soup/fondue/dip type concoction comprising cheese, onions, tomatoes, jalapeño peppers and a touch to much Tabasco sauce. It was served with warm mini pitta breads to dip. Main course was a leg of lamb seasoned with African spices, rosemary and garlic and served with a variety of veg. Dessert was a gooey dark chocolate gateau. Needless to say I scoffed the lot, then spent the afternoon sleeping it off in the garden. It was cooler today thank God but still in the 20's, a nice cooling breeze made breathing easier so a much more comfortable day all round.

Back to work today. Working on a bank holiday is very unpredictable. It can be ultra busy because there are fewer of you trying to do a normal days work or ultra quiet. Today was the latter and the day dragged. At one stage I was so bored I could have gnawed off my own foot just to have something to do. Still the lack of activity gave me some much needed thinking time and I've come to the conclusion that I shouldn't think as it invariably gets me into trouble. I also took the opportunity to have a long chat with one of my supervisors about how I was coping at work and what could be done to support me more. I was told that I should allow people to help me. Letting people help me, even asking for help, is something I find incredibly hard to do.  I sail through all the procedures, clinics and different medications with hardly a bat of an eyelid but if I have to ask for help I turn into a quivering wreck. It freaks me out.  It was a good chat with my supervisor and ironed out some things I've been worrying about, with a bit of luck I might have a good night's sleep tonight.

I was promised a barbecue for tea when I got home so was bitterly disappointed when it was canceled due to Tesco not having any bread left, or anything else by the sound of it. Instead it was cheese and pickle sandwiches and the promise of a feast on the next weekend off. I think it is time I took back the kitchen before we all starve.

Life is a Minestrone

As I am sitting here typing this I can hear all sorts of clangs and crashes as the three men in my life prepare lunch for me. I have been sent packing from downstairs for 'interfering' and my role is reduced to the occasional request for advice on how to peel a tomato or separate an egg. The smells are even more curious being somewhat more exotic than those that usually come out of my kitchen, even when I'm doing a curry. I have worked out that I'm having lamb, having bought it myself, and some kind of gateau but the rest is a mystery though a large amount of mint, garlic, rosemary and onions have gone missing from the garden. I don't know whether to be excited or terrified.

Yesterday was so hot, registering 27C in the garden just after 1400. I'd spent the morning planting some Sweet Peas and other flowers in pots around the decking but in the afternoon all I could do was sit and read. I found it difficult to breathe yesterday. I don't know if that is because of the 'smog' we are supposed to be having at the moment or whether it was just the sheer heat, (OK I know 27C is not very hot but when you have difficulty breathing even the slightest rise can cause problems), but whatever it was I was forced to retire inside to the cool of a darkened living room until things got a bit easier. By 1700 the sun had moved around to the front of the house meaning that the garden was shaded and cooler so I was back outside Pimms in hand to enjoy the late afternoon. It was lovely hearing the birds singing, everyone must have been either away or at the shops because the usual sounds of traffic, screaming kids and raucous barbeque's that tend to spoil such lovely days were mercifully absent. I did something yesterday that I haven't done for years, bought an ice cream from a van and extortionate isn't the word, will be another few years before I will be buying another one.

So back to today and only an hour to go before the big event. There has been some swearing so I don't think everything is going entirely to plan. Whatever the outcome it is nice not to have to cook Easter Sunday lunch for the first time in 20 years so I will enjoy it whatever they stick in front of me.
Happy Easter.

Lazing on a sunny afternoon.

Well after a rough and hectic couple of days I've finally found some downtime and am typing this while listening to the birds singing and breathing in the heady perfume of the lilac tree. Anyone would think that it was mid August not mid April. I've got loads and loads of housework to do but you know what, housework is for rainy days and as this might be the only summer we are getting this year why waste it.

So what's been happening, well Wednesday I sank into a very deep hole and spent a lot of the time weeping. The letter from the Brompton was a bit of a blow. I know I'm really ill but to see it laid out in black and white like that really hit home. I was so down I didn't know what to do with myself, work seemed so difficult. I even spent my lunch hour sitting outside in the car with all the windows down listening to music in a hope the sunny weather would lift my mood but it didn't and in the end I rang my nurse consultant for advice but as is sod's law he wasn't around so a message was passed to call me. He eventually rang back and after a long chat hypnotherapy was suggested. He said it was not unusual for people in my position to suffer bouts of severe depression and that results were good from this sort of treatment. I'm not a big fan of holistic treatments and I do not believe in hypnosis but I was desperate so agreed to give it a go. I have been referred and am waiting for an appointment.

Yesterday was a day off and most of it was spent shopping. This year my three men have decided I am not cooking the Easter Sunday lunch, they are. They have taken a course each and after much agonising settled on a menu, however it was me that ended up buying everything. some of the ingredients are rather exotic and took some tracking down but I got it all in the end. God knows what I'll be eating but have come up with a back up plan just in case it all ends in tears or, more likely, inferno. Strangely enough all the activity took my mind right off my problems and my mood has lightened considerable. The shops were hell by the way and although Peter came with me I was utterly shattered by the time we got home and all I could do was lie on the sofa until bedtime.

I slept late today and missed my first medication, ohps, but I think on this occasion the sleep did me more good. I have recovered my positive outlook and am feeling much more at peace with myself. Though sitting here in the garden might have more than a little to do with it. Peter helped me plant some carrots seeds and some basil and we've laid out plans as to where to put the tomatoes then Peter childishly squirted me with the hose so he's in bad books at the moment.

In other news Andrew completed his two trial runs with the pub and very successful they were to, he came home with £50 and a big smile on his face. They are going to look at their rota and see where he can be best fitted in with his studies and his karate. I finally put together all the paper work for the DLA and will be popping it in the post tomorrow. I've got copies because I do not trust them an inch. Ah well, I've run out of smoothie, got to get some more and then a quiet snooze before tea, it's a hard life.

20. Try hang gliding
21.  Do a tree top walk (both of these will be real challenges because I'm scared of heights)

I read the news today, oh boy.

Got the results of my latest batch of tests from the Brompton today. Its all doom and gloom, phrases like 'significant deterioration', 'her echocardiogram did show significantly raised PA (pulmonary artery) pressure', obviously limited' and 'severely impaired' litter the assessment. It seems they want to temporarily halt my meds so they can get an accurate picture of how bad I am. I will be in hospital for this but I'm scared stiff. I know how bad I can feel with just a small disruption so the thought of being without them at all terrifies me but if I want the transplant it has to be done.

I had a weird dream last night. I was swimming through clear warm water. The sun was shining and I was diving down following exotic fish and all without any breathing difficulty, it was wonderful. OK a dream about this weeks lottery numbers would be far more useful but as dreams go it was one of the better ones.

Work has been difficult today. I've been feeling a bit out of my depth and 'lost'. I'm restless and don't know why. I can't say it's the calls I've taken because on the whole I've had fairly reasonable people to deal with today so why the big downer? Maybe tomorrow will be better.

17. cuddle a tiger cub
18. visit the Grand Canyon

Working 9 to 5

I really must try not to let work stress me out so much. Don't get me wrong it is a great job but sometimes I do wonder if it is worth all the effort. To be honest this is not what I envisaged doing at this stage of my working life. I so enjoyed teaching and I was bloody good at it too. If I'd been able to continue I might even have been a department head by now. There is so much I could have done and its all been taken away from me and I'm bloody angry about it. On top of all this anger is the frustration of knowing  I'm never going to match up to expectations in my current job. It's impossible, I'm too ill to put it the time and the effort to be really good at it. There are so many aspects to it, so many things that can go wrong you have to be on the ball all the time. I really admire my colleagues they are so knowledgeable and seem to glide effortlessly through the toughest problems. nothing seems to phase them. I am struggling so much. I could play the 'poorly' card but it is against my nature to make excuses. I hate not being good at what I do, it is so frustrating.

Don't get me wrong, I'm not a disaster zone but when I'm in pain or tired or just not feeling well I get impatient and snappy and make stupid mistakes. I know it's happening but can't stop myself. I've been told I can take extra breaks if I need to but I feel so guilty about putting more pressure on those I work with. So what to do?

If I'm honest I know my working days are numbered, I know that. There is no way I'll make it to retirement age. I'll have to give up way before then. The question is how long to keep going. Do I accept the extra help on offer and keep going, all the time feeling guilty about being carried by the others? Or do I give in gracefully and stay at home looking after myself while slowly driving myself and everyone else mad? Neither seems a good option to me but it is a problem I'm going to have to address sooner rather than later. I guess this is something I'm going to have to think really hard about but not when I've just come home from work and am feeling tired and emotional. Sorry about the moan.

Riding along on my automobile

For those of you waiting with baited breath. the fairy cakes turned out to be absolutely delicious.

Today I was kicked in the chest by a cyclist whilst toddling along minding my own business on my motability scooter. It wasn't a mindless act of violence just another example of how invisible you become when sitting on one of these things. This is how it happened. I was riding along the pavement past an ATM machine when suddenly this cyclist swung right in front of me forcing me to stop, then without even appearing to notice me he swung his leg over the back of the bike to dismount and kicked me square in the boob and arm. He looked so surprised and then glared at me as if it were all my fault. Git! If I'd have been able bodied I'd have had him off that bike and in the hospital so bloody quick, but I'm not so I can't and I resort to a few choice words and leave.

Unfortunately this is par for the course when riding a motorised scooter or being in a wheelchair. Mostly the public reaction to you can be quite amusing, occasionally it can be painful. In the past I have been bashed around the head with a wire shopping basket by two women who were far to busy gossiping to notice me. The two main reactions are opposite ends of the spectrum. There are those that won't look at you, they go to great lengths to not look at you and I have had people are so intent at not looking at me that they have lost track of where I am and have fallen over me. Then there are the 'I'm not embarrassed by your disability and am going to prove it by helping you whether you want it or not' brigade. Contact usually starts with the following:-
'So how are we today?' This is done while either squatting in front of me or bending over at right angles to ensure full eye contact. Well 'we' are not deaf or stupid so please don't talk to me as thought I was a thick toddler with a hearing problem. You get the picture. Then there are the ones who take sneaky peeks when they think you are distracted and try to work out what it wrong with you. The eyes immediately go to your legs as they try to work out a) if they are your own legs and b) if they are your own legs what's wrong with them. I personally prefer the honesty of children, they come up and ask you what's wrong and I have no problems telling them.

I hate using a scooter or a chair but I can't get away from it, especially if visiting somewhere like Watford which we were today. We like to go around the charity shops looking for books, you can find some real gems and of course they are much cheaper than in somewhere like Waterstones. Unfortunately this means a lot of walking and so a chair is essential.

Today I've been reading up on one of the new therapies being developed for PH. This is being trailed in Canada and so far is looking pretty promising. A man there has been give stem cell treatment so essentially his body is healing itself. So far progress has been so good he has been able to come off some of his drug therapies and is doing lots of stuff he couldn't do before. It sounds wonderful and so much safer than transplantation but of course we don't know the longer term effects. Could it really be cure or just a temporary reprieve? Who knows but I'd be first in the queue to try it if every they decided to set up a trial in the UK If only.

Britain's Got Talent is back tonight! This is a very guilty pleasure but I just can't stop myself.

15. Learn to juggle
16. run a marathon.

It's A Miracle!

I was not going to blog today as not a lot going on but this is so momentous I just had to record it for posterity. As I am sitting in the study typing this my eldest is in the kitchen, baking. Yes that's right baking! I don't know what but have been ordered to get some whipping cream and white chocolate when I go out later.  I'll report the results of the great bake off tomorrow.

It has been a bit of a good news day in the Roberts household today. First up Laurence, my eldest, declared he was feeling a lot, lot better and backed the statement up by ransacking the fridge. The second piece of good news is that Andrew, my youngest, has landed a job with one of the posher country pubs. OK he hasn't quite got it yet, he has to do a couple of trial shifts next week but he got on well with the landlord at the interview so we are hopeful. The third bit of good news is that I've managed to track down all the paperwork I need to support my DLA claim so that will be sent off later today. So far things are shaping up for a good end to the week.





Things to do....
14. Learn to belly dance. 

Run For The Pills

I have one very poorly little prison warden at home today. Came home last night looking flushed and complaining of extreme tiredness and 'flu like' symptoms. Yikes! The last thing I need right now is flu in the house. That's another thing with PH, between the illness and the drugs you have to take your immunity is at rock bottom and you catch everything, even if you have been vaccinated. Flu etc can be really dangerous as we have enough trouble breathing without the extra strain something like that puts on our systems. I caught Pneumonia 18 months ago as a secondary infection following a cold and was bed ridden for six weeks. It nearly killed me (not kidding) so naturally I am terrified of getting it again. So instead of being the good mummy and providing lots of sympathy, tea and aspirin I have to keep my distance. He understands but even so, it doesn't make me feel like a proper mum anymore.

I've done it, I've checked and re-checked and finally plucked up courage to hit the 'send' button. My DLA claim is in, let battle commence.

Risked a trip to Tesco's, it was hell, forgot that school's out. We are now fully stocked on paracetamol, tissues, Olbas Oil and throat pastilles. Got the usual dirty looks from people who clearly do not think I ought to be parking in a disabled bay. It is really weird how most people will only accept a disability if it is visible, such as a missing limb. I'm getting used to being glared at, it used to really annoy me and my husband and sons have had more than one argument with busy bodies who come over and demand to know what right we have to park in a disabled space. I don't bother wasting energy on them now and usually just walk to the back of the car and open the boot so that my wheelchair can be extracted. That  tends to shut them up, then of course I have to put up with being stared at BECAUSE I'm in a wheelchair. You can't win, it isn't nice but you learn to go with it. Life is too short for such pettiness.

Things to do before, etc
11. Go to a nightclub and dance the Time Warp and the Macarena
12. Learn to fly a plane
13. take tea at the Ritz 

Surprises.

Last night I had two unexpected contacts. The first came from a friend whom I help out with various charity projects from time to time, the second was my sister.

My sister is in the grips of anorexia at the moment and is causing us all a lot of worry. She has been avoiding visiting my mother so no one knows exactly how ill she is. The fact that we spoke last night is very encouraging and she has said that she really wants to get better so she's taken the first step back to recovery. Thank God! I first found out what was going on from my Mother around Christmas, she had kept it from me for several months but couldn't cope with it on her own anymore and needed to get things off her chest. When I asked why I hadn't been told she said it was because I had enough to deal with. Why do people always do this? I knew there was something up and thought SHE was ill. Just because a person isn't well doesn't mean they should be kept out of the loop. Anyway I'm going to force the issue of contact with my sister and try and ring her at least once a week to see how she's going. I don't know if it will help but you never know. Maybe me being so far away will help her talk as I can't be there to constantly nag her, which I suspect my Mum tends to do. I can but try.

My second contact is a lovely gentleman who helped me so much when I was first diagnosed. He was one of the few who rode out the temper tantrums, frustrations and fear and let me believe that I still had a life and a purpose. We flit in and out of contact but will always remain friends (I hope). I am hoping to meet up very soon for a chat and a cuppa.

Woke up this morning with a badly twisted ankle. How I do not know, I just wish I would stop beating myself up in my sleep.

This morning's post brought a letter from the tax man stating that they are stopping my disability tax credits as I no longer qualify. Huh? Since when? A quick phone call, well when I say quick I had to go through numerous menu's and hold for 15 minutes before speaking to a human being, has now reversed the decision. Honestly how hard can it be for government department to talk to each other and share information? The most ludicrous statement of them all was 'If you are working why are you claiming benefit?' Because DLA is a benefit for disabled people who still want to work and need a little bit of financial help to do so, Moron! I ended up explaining DLA and what it was for to someone who was meant to be advising me!

That's another thing with PH, you are constantly fighting something or someone. The main war of course is with your own body but there are lots of other little battles raging around it, mainly with the benefits agency, NICE and the PCT. And just when you've won something and think you can relax a bit something else crops up to take it's place. The worry and effort is utterly exhausting and to be honest I'm not sure how much longer I can keep fighting.

I've sent a little olive branch out to someone today, I really hope it starts to leaf.

And........relax!

If you ever fancy a sausage roll just before bedtime my advice is don't. I've had a dull head and hideous indigestion all day.

So what do you do when you come home from a long hard day at work to be greeted by an excited 17 year old uttering the following. "Mum I've spent all day on the Internet and I've finally chosen my course. I'm going for Nuclear Physic, it's going to be easy and it pays pretty well to." So that's career 352 discussed, I hate to think what he'll actually end up doing.

Work was quite good today, I've been screamed at, insulted, verbally abused and complimented, not that much different from teaching really. Sometimes human nature truly amazes me. And to add to all the excitement we had a meeting about how things are going to be changing. As usual a lot of words but no real information. I guess they don't really know what is going to happen but left they had to say something. I feel so sad for the people I work with. All the uncertainty and most of the girls have young families to consider. They really don't need it.

I have the next four days off, thank goodness these three day have really drained me, and so much to fit in but at least for once there are no hospital appointments. I think one of the hardest things to cope with when you have PH is the disruption that comes with it. The constant round of hospital appointments, blood tests, ECG's, ECHO's etc, etc. Hardly a week goes by without at least a few hours sitting in a waiting room. Then there is the daily disruption of the drugs. Depending which ones you are on the disruption can range from a few minutes to several hours. If you are taking diuretics then your whole morning can go to pot as you need to stick as close as possible to a loo for at least three hours after you take the damned things. To be honest if I have to be anywhere that requires a long journey I tend to put off taking the tablets until I get home or sometimes not take them at all otherwise I'd never be able to go anywhere. Such is life.

First stop tomorrow, checking that bloody DLA form, Arrrggghhhh!

I Don't Like Mondays

Well there is the odd exception and today might just be it.

Was moved to tears today by unexpected kindness it just shows how easy it is to misjudge people. Also the person I was having a bit of bother with showed unusual sensitivity and understanding. What happens now I'll just have to see but it looks as though things have sorted themselves out for now with minimum fuss. The people I work with are exceptionally kind, generous and supportive and I am so lucky to have found them when I need them most.

It's been a bit of an odd up and down sort of day all in all and has left me dead on my feet but feeling a lot happier and more relaxed than I have for some time.

Driving in today the radio was discussing making list of 'things to do before you die' and it got me thinking that maybe this is something I should do, not in a morbid sort of way but more as setting out goals to aim for. So here are my first ten.
1. Take a quick turn around Silverstone, Nurbergring or Monte Carlo GP circuits. Now technically I have already achieved this as I have driven the Monte Carlo circuit but not at racing pace.
2. Have a day being indulged at a health farm.
3. Go ice skating.
4. Go sking.
5. Learn to Tango (I guess the last 3 are going to have to wait until after the transplant).
6. Have a night at the Opera, something light and Italian.
7. Visit Rome again.
8. Climb the volcano in Hawaii (again have already done this but would like to repeat the experience as it was the last time I remember feeling really well. Another one for after the transplant.)
9. Learn to speak Italian properly, I can get by but would like to be fluent.
10. Have one uninterrupted nights sleep.
I will be adding more as I think of them.

Feeling a bit peckish this evening so while I am writing this I have a pot of home made tomato soup bubbling away on the stove. Another 5 minutes and it will be ready yum yum. My little Sensi has going off for his training session so will leave some for when he gets in.

Thought Police

One reason I started this blog is so I can say what I think without getting shot down by people who really need to find something to do other than set themselves up as unofficial moderators. There is a lovely lady who has been going through a really rough time of it health wise and needed some support so posted her woes in the official PHA forum. Unfortunately for her she posted more detail than these self appointed moderators liked and instead of getting the help she needed she was hounded and criticised in such a rabid way it shook me to the core. Now these same people have been commenting on why this lovely lady hasn't been posting lately. Are they really that thick they can't work it out for themselves? Anyway unable to sit on my hands I pointed out that her absence might have something to do with their behaviour. Unfortunately honesty is something these people cannot handle so I'll probably be banned from posting for a few days to 'teach me to comply' to their way of thinking.

Dont get me wrong, the majority of people on the forum are kind, generous and helpful people who will bend over backwards to help a fellow sufferer but as usual it only takes one or two bad apples to spoil it for everyone else. If you are new then do ask your questions and tell us your problems but if you want a quiet life leave out the detail.

Anyway enough of that on to DLA news. Four days it has taken me to fill the form in so far and at last I have reached the end. I was pleased to see that there is a print feature on the site so that's what I did and 25 pages popped out. Yikes! I'm putting it aside for a couple of days and will read through it again before submitting it.

Back to work tomorrow, still haven't decided what to do about the little bullying problem. I think I'm going to have to tell someone, trouble is who to choose. Before I do though I'm going to give her the benefit of the doubt and see what she does over the next day or two. If she backs off then fine, all over and done with. If she doesn't then I'll have no choice. I go to work to forget about my health problems not have then rammed down my throat.

Eldest is back from Sheffield and feeling rather delicate. I have been given a fairly graphic description of the various conversations he's had on the porcelain telephone and he has declared he is never going to drink again. Now where have I heard that before?.

Saturday Night Is All Right For Fighting

I could SCREAM!!!!

But first a quick update. Film last night was Blazing Saddles, very funny. As I am not working tomorrow and there is nothing on telly we are having another film night tonight so hello Harry Potter and the Goblet of Fire! Eldest is in Sheffield for the weekend attending an end of term part with some of his uni friends but he isn't a big Harry Potter fan anyway.

Had a letter from the hospital replying to a complaint I put in a couple of weeks ago. For those of you who do not know the background a quick overview. I was booked into the clinic for 1pm and also had an echo booked at 3pm. I started having problems with my meds so they asked me to come in earlier and go to the ward so they could give me a more thorough check up than they could in clinic. I was to keep my echo appointment after which I could go home. I was told to attend the ward at 10 so I arrived on time and had a long chat with the doctors and then settled to wait for my echo. I arrived at reception on time only to be told that my appointment had been canceled and the slot taken by another patient. To add insult to injury the receptionist was quiet rude and told me I should have let them know I was still attending the echo as these are routinely canceled if the outpatients clinic is cancelled. And how am I supposed to know what their procedures are if they never tell anyone this. I would normally just let it go but because I was feeling poorly and the receptionist had been so rude I wrote in and complained bitterly. The letter is very nice and waffles on about re-training and revising etc, etc. I doubt anything will change but at least someone did read my letter.

OK now onto the screaming bit. Why do people have to be so nasty? There is someone at work who is trying very hard to bully me and I really don't know what to do about it. She is a chronic attention seeker and seems to think she is in some sort of competition with me. I was so close to lashing out at her today. I love my job and the majority of people I work with but this woman is making my whole life a misery. When I see her walking through the door my heart starts racing and I start sweating and feel sick. And I sit there and wait for the first dig to come my way, this is really stressing me out which of course is affecting my health.The trouble is she is really subtle about it so I don't know if anyone is noticing what is going on. I don't want confrontation but I don't want to dread going into work either. I've got the day off tomorrow so sometime to mull it over.

If The Drugs Don't Work

Well been trogging along filling my DLA application and came across the question 'List all the medication you take, the dosage and frequency.' I'd never thought of this before and was quite shocked when I listed it all.
Iloprost 5mg 9 x per day
Salamol 100mg  x 2 twice per day
Qvar 100mg x 2 per day
Adizem SR 90 mg 2 x per day
Furosemide 40 mg 1 per day
Spironolactone 25 mg 1 per day
Warfarin 3mg once per day
Ferrous Fumarate 210mg 3 per day.
And there is at least another one to come, no wonder I feel sick a lot of the time. The Iloprost takes around 15 minutes each time so that's a whole 2 hours and 25 minutes just taking one medication. How do I manage to fit it all in?

Anyway enough of talking about this bloody disease for now and on to pleasanter things.  I was absolutely delighted to be told last night that my youngest has past his karate black belt and is now officially a Sensi (that means 'teacher' in Japanese). The advantage being he is now qualified to set up and teach a club of his own. A handy way to earn some extra income when he goes off to uni next year.

I spent the morning planting the herbs I bought yesterday. Well when I say I planted them I mean I pointed out where I wanted them then my husband dug the hole, put the plant in it, covered it up and watered it in. The garden is now looking much better and it was lovely to spend some time pottering around in the sunshine.The afternoon was spent getting things ready for work tomorrow. I work a 4 days on, 4 days off rotating shift pattern and it is my turn for weekend duty, which actually isn't such a bad thing as it ought to fairly quiet. Took some pictures of my son in his new black belt when he came home from school. He did some really impressive jumps and kicks, I hope I've managed to catch them all and they are in focus as he can move faster than my shutter finger.

Tonight is film night in our family and we take it in turn to chose a DVD to watch, we have close to 1000 DVD's as my husband and I are real film buffs, something we seem to have passed onto the boys. We make popcorn and have bags of crisps at the ready and turn all the lights off, it is as close to being in a real cinema as you can get especially with the surround system. This is our special family time and I'm really going to miss it when my eldest gets his own place and my youngest is at uni so I'm enjoying it while I can. Tonight I've bought an El Paso Nachos kit as a special treat. It's my husbands choice tonight so it could be a bit off the wall.

Malaysian GP on Sunday, I will be routing for the British boys and Mark Webber as I really believe he needs a break. I'd already booked the day off to watch it and will still be taking the day as I can use it to assess whether I'm really well enough to be back. The doc said take it easy, do not over do it and if you start feeling ill go home. Advice I will be listening to.  Ah well off to take my 6th dose of the day, only another 3 to go.

DLA - Top Tips for Getting It.

After my DLA renewal landing on my lap yesterday morning I decided I was not going to go through appeals and tribunals yet again so did some ringing around for information. I rang my specialist center, the CAB (Citizens Advice Bureau) and even the DWP benefits helpline, they were surprisingly helpful, and I have now come up with a list of things needed to get approval first time. Hope you find them helpful.

1.  Do it on-line. This has several advantages (in my case being neater for a start) and is not as difficult as you might think. You will need to register and get a Government Gateway ID and password. But after that it is pretty much plain sailing. I have looked at the form and there are definite benefits to doing it this way. The questions are more detailed but you have more space for your answers so you can explain things properly. You can move back and fore through the site so you can make corrections or add things you'd forgotten. You DO NOT have to do it all at once, there is a save feature so you can do a bit at a time. You will need your ID and password to access you form so make sure you write these down and keep it somewhere safe. Web address http://www.direct.gov.uk/en/disabledpeople/financialsupport/dg_10011925 Anyone having difficulty finding their way around email me and I will send you a detailed helpsheet with illustrations, these will be ready next week.
2.  Do not sell yourself short. When answering the questions you must think of how you are on your absolute worst day. The day you can't get out of bed, need help to get to the bathroom, eat, take your meds. You may only have a bad day once or twice a month but you have them and they are the days when you need help.
3. Supply documentation. you will be asked to proved proof of medications etc. DO NOT SEND PHOTOCOPIES, they will not accept them. If you have a repeat prescription form copy it, keep the copy for your own use and send the original. If you have drugs delivered by courier send the delivery note, this often has the advantage of having your name and address, the hospital's name and address, the type of medication and sometimes the condition it is for. you will also need a recent hospital report or covering letter from you PH center, again copy it and keep the copy as proof you have sent it. When you have gathered all your documentation pop it in the envelope with a covering letter, the letter should contain your name and address, National Insurance number, the reference number for your on-line application (you will get this when you finally submit your form), and a list of all the documents included in the envelope. It is a good idea to include results from your latest 6 minute walk test including you oxygen sats before and after to give a clear indication of what walking does to you. Make sure the report does include the sats results though, I made the mistake of sending a report that said I could walk 350 meters in 6 minutes but did not log how many breaks I had (when the clock is stopped) or what my sats were when I'd finished, they reject my application out of hand without reading any further.  Include as much information as you can, I would add the addresses of websites that can describe what PH is, though when I did that I was told they do not look at websites so my answer was to print off the relevant pages and add them to the pile. If you have received a renewal or application pack you can send the documents back in that. Make sure you clearly state they are supporting your ONLINE APPLICATION. You are not dealing with rocket scientists and they will need it spelling out to them. Do not staple things together, at most use a paper clip and number the documents to correspond to the list. Again keep a copy.
4. Keep It Real. Be realistic about what you can or cannot do and explain why. The magic cut off point for DLA is being able to walk 50 meters without stopping or needing help. We all know that for those with PH we can often walk further than that but it is what the effort is doing to us that matters. A good explanation (and I borrowed this from someone on the PH website, thank you) goes something like this. " The pressures in my lungs as so great that my heart has problems pumping the blood around my body, the blood does not carry enough oxygen which means that it is difficult for me to carry out any physical activity such as walking, lifting carrying etc. Walking makes this situation much worse and the lack of oxygen can cause me to become dizzy putting me in danger of fainting and hurting myself." I would still put your distance down as 50 meters even with the explanation as if they see anything above that they are unlikely to read any further. Remember we are dealing with someone with a tick box and no common sense.
5. Don't Lie. Stretching the truth is OK but a blatant lie is out. Firstly your specialist center will not be able to support your statement and secondly if you have to have a medical you'll have to prove what you have said. So if you have said you cannot carry anything and then walk in with a handbag the size of a suitcase it will immediately put your claim in doubt. 
6. KISS (Keep It Simple Stupid). Don't use abbreviations without explaining them at least once. It is no good saying you have IPAH because they won't know what that is or bother to find out. Idiopathic Pulmonary Arterial Hypertension followed by the abbreviation should be enough to enable you to use the IPAH only in later questions. Do not use jargon, we might be used to hospital speak but they won't be, explain as though explaining to a rather thick child and you cannot go far wrong. Also there is an advantage in giving your condition its full title. In this case there are three complicated long words before they get to the hypertension bit. A bit difficult to ignore them and put it down as just high blood pressure.
7. Needing Help. Embarrassing as it might be you must lay it on a bit thick about the help you need. you might think you do a lot for yourself but think about it. Does someone bring you your meds with a nice cuppa, set up and/or clean any equipment you use or cook the evening meal because you are too tired to do it yourself? If the answer is yes then put it down. You will be asked how often you get help, the emphasis here must be more often than not. Always put down that you have this sort of help every single day, they are not living with you and cannot prove you don't. If you have a carer say so. Never use words or phrases such as sometimes, occasionally, mostly or 'when I'm really ill' in your answers as they sow the seeds of doubt about how much help you really need. If you are on oxygen then you will need to point out that being on oxygen and near a cooker is not a good thing. When you come to the 'preparing a meal' question remember it means can you get to the shop to buy the ingredients, carry it home, prepare it, cook it and wash up afterwards. If you cannot do that then you need to say which elements you need help with. If you are on Warfarin then being around sharp knives is also not a good idea. Warfarin use can also be used in the 'walking' question, point out that if you fell and banged your head you would need to go to hospital to get checked out as you are in danger of internal bleeding and possible stroke. This can cover why you cannot walk far and need someone with you when out and about.
8. Meds. List your medications and give the dose eg 25mg and the frequency eg 2 per day. List ALL your meds whether directly associated with your condition or not. The aim is to show that your illness has a significant impact on your life, Taking 6 -7 meds several times a day has a severe impact. 
9.  Supporting Statement. It is a good idea to add a supporting statement to your document pack. Do not write and essay, they won't read it, keep it clear and concise. Say which point on the form the addition refers to, 'I wish to expand/explain more fully my answer to question 12b' helps them focus on what you want to say. Make sure you have used the word 'terminal' in at least on of your answers. If you have not given a simple explanation do it here. you can use the explanation I gave earlier on and repeating yourself is not a bad thing in this case. You should also add this (again borrowed, thank you, thank you) 'This is a rare condition with only 4000 out of 68 million UK residents diagnosed. There is no cure for this condition except for transplantation but sadly many died before donor organs become available." If you are or have been assessed for transplant say so, it doesn't matter if you are not on the list yet.
10. Check before sending. Check, check and re-check the form before submitting it. Even get someone else to check it for you as another point of view can be helpful.

My thanks to Annie and Tracie from the PHA forum http://www.phassociation.uk.com for the additional information.

Hope this helps, if you have any questions not answered here then please email me or pm me on the PHA website. I will add to this if I find anymore info and of course I will keep you update on my application.

Good luck!

Raging Against The Machine

Just be warned I am about to have a rant, but first lets cover some of the nicer things in life.

Reviewed the photos I took yesterday and I must say they came out better than I hoped. You can see these pictures at  http://www.flickr.com/photos/gwynhafyr

Then it was off to the garden center to buy the herbs I wanted after my old herb garden was destroyed by building work. I bought a variety of plants including Sage, Thyme, Rosemary, Mint, Oregano, Dill, Bergamont and Marjoram. My long suffering husband then prepared the bed and tomorrow I will be pointing out where I want them to go and he will plant them.

OK Hazel, deep breath.

Bloody DWP! What landed on my doormat this morning? Only my renewal pack for my DLA (Disablility Living Allowance). For those of you who don't know what it is, this is a benefit which allows you to pay for all the extra things people like me need in order to have as near as normal a life as possible. I use mine to hire motorised scooters when out shopping, to keep my car in good repair (I would be housebound without it) and for petrol, food and sometimes bed and breakfast when I have to attend the Royal Brompton or Harefield to visit clinics and have the endless tests you need for transplant.
Anyway 2 years ago I filled one of these forms in and was promptly disallowed because I "only have high blood pressure." This was because the form was assessed by some university reject with 3 GCSE's in media studies and art, an IQ no higher than their shoe size and an inability to use the Internet or a dictionary. This resulted in an appeal which was also rejected and then a tribunal where my DLA was hurriedly reinstated following a letter from my specialist. In case the same brain dead retard is still employed I am really going to town with it in the hope they realise that this is something more than 'high blood pressure' the first time around.
All this stress and aggravation could be avoided if the DWP (Department of Work and Pensions) looked up the word 'terminal' in the dictionary and understood what it meant. People with terminal illnesses, such as PAH, are not going to get better, the only way I will get better is to have a transplant, sadly most of us will die before that happens. Why can't the DWP grant permanent DLA to seriously ill patients instead of putting them through stressful, and often humiliating, applications, medicals and groveling. Do they not realise that all the worry can make things worse. You can apply under 'special rules' where you get DLA immediately, no questions asked and for life but that life has to be guaranteed to last no longer than six months. And while I don't begrudge anyone that ill the help they need what can't it apply to to all patients classed as seriously, terminally ill? Maybe it is time the DWP stopped giving DLA to those who are too drunk, drugged or obese to work. They chose their illnesses, I did nothing to deserve this, nor did the thousands like me. Rant over.

Grovelling Amongst The Gravestones

Oh the joy of throwing on a pair of tatty jeans, an old t-shirt and flip flops, grabbing a camera and heading out into the sunshine. Of course with me it is never that simple so add a bag full of meds to the equation and you are nearer the truth.

The day did not start well as I awoke feeling more than a little hung over from the late night pizza treat provided by my eldest. Laurence. I am not used to eating late but couldn't resist a margarita with extra onion. This morning I woke up feeling very heavy stomached and with a raging thirst. I don't add salt to any of my food so a pizza is like having my whole years allowance in one hit. The weather was not promising so I was delighted when the sun came out mid morning and the temperature started to rise.  By lunch time it was 21C so I just couldn't stay inside and it was decided to spend the afternoon out with the camera. Headed for Willington where there is a Tudor dovecote and stables. They were pretty boring but took a few shots and then headed for the church of Saint Lawrence. I like taking pictures of old and unusual gravestones, some of the Victorian ones are nothing short of works of art with all their angels and cherubs but sadly nothing that interesting was found. I was about to leave when I spotted two Ladybirds clinging to a leaf and just had to take a shot. After several attempts there was nothing for it but to lie at full stretch amongst the graves to get the shot I wanted. Was I successful, I will only find out when I upload them tomorrow.

Drove home via Bedford town center as Peter wanted to call in at Maplin, sitting in the car with the warm sun streaming through the windows I very nearly fell asleep. I would have loved to have taken another stroll along the river but was too exhausted. Maybe I'm not as well yet as I thought I was. Tomorrow is going to be a quieter affair, a trip to the garden center and a sit in the garden while I watch my boys plant what I've bought. Perfect!

Vampire Alley

 Jab, Jab. "Oh you have a lot of scar tissue here." Jab, Jab.
"Yes that's because I have a lot of blood tests."
"It is really tough getting the needle in." Final big jab and she finally finds a vein.
"Maybe that's because you are using a blunt needle." Smiles sweetly while thinking 'yes and I'm going to have another bloody scar the way you are going.'
Walking away from this trainee NHS torturer I spot one of my colleagues from work who is there with her mum. We chat while I pat  Peggy her guide dog.

Tesco is quiet for once and we whiz  around, I manage to resists adding to my tomato juice collection but sadly cannot stop myself from picking up a large bag of Haribo Tangtastics. I eat them on the way home and suffer a huge sugar rush and a bout of nausea for my greed.

I arrive home to find youngest sprawled on the settee, I have had three phone calls since going out. Two appear to be sales calls but the other is from Care At Home who want to arrange delivery of the next 3 months supply of drugs.I call them back and we agree on Tuesday. I am informed that I will be receiving extra to cover the 9 dose regime. Where am I going to put them all?

The First Post

So what is in store for me today? First stop is a trip to the hospital for some blood tests, they keep telling me I'm anemic but keep removing blood, you work it out, they don't seem to be able to make the connection. Then it is off for the weekly hell that is Tesco's. Actually this isn't as bad as it could be. My job allows me time off in the week to hit the shops so I rarely have to battle with the Saturday crowds. I've become addicted to Tomato juice lately, which is rather worrying, so I will be stocking up on that. Then it is back home to take one of the 9, yes that is 9 not a misprint, inhalations I have to do everyday. It used to be 6, wow, but recent events have pushed it up temporarily while the medics try and work out yet another drug regime for me. Not sure how this is going to pan out at work but as it is only temporary they might be OK with it.

The choices I have are simple, or would seem so on the surface. The preferred option is to add a drug to my already vast intake, however the PCT are kicking up a stink about this as they do not like anyone having more than one expensive drug at at time. At the moment my main drug costs £50,000 per year. To add another will cost around another £20,000. The PCT do not want to pay this. The second option, and to be honest the most likely because of cost, is to swap my inhaled meds for intravenous ones. Now this option costs roughly the same as the one I'm on now so the PCT shouldn't object, however for me it means having a thin tube inserted under my collarbone and into one of the main blood vessels to the heart and having this tube attached to an electric pump 24/7. Not MY first option by any means. The choice unfortunately is out of my hands, and also out of my medical teams hands as the decision will be based solely on cost and not necessarily what is best for me. Makes you sick, excuse pun, doesn't it?