Right, I got my letter from the doctor and I really did send this letter of appeal. Let us see how it goes!

Dear Sir or Madam,

I am appealing against the decision to refuse my entitlement to DLA. I am appealing on both the care and mobility components as my family (mother, father, sister and boyfriend) all care for me and live with me because of my conditions and the mobility as when I am sick I am bedridden.

I have enclosed the recent letter from Infection Control which states that they have no idea as to whether I will get another infection before having most of my forehead and the skull up to the midline of my hair removed and completely replaced with titanium. This operation is only due in mid July to reduce the chance of infection. Until then I am damned if I take antibiotics and damned if I don’t. They feel sorry for me because they can’t be sure that I will live. Please note that the necrotic bone and skin around it is now far bigger than the 1 cm stated in the letter already. I will enclose a picture.

As, as my plastics consultant will verify, I get floored by the MSSA and suspected pseudomonas infections this means that whilst dealing with infections I am almost bedridden and completely housebound as these infections eat through the bone in my head and the skin and make each and every muscle ache, even waking me during the night to take pain killers. This makes mobility absolutely impossible.

I was diagnosed with PTSD over 4 years ago because of the brain tumour and recurrent osteomyelitis (infection) in my forehead. I can not even tell you how scared I am now and how many times I think back and forward with just trauma all around. There are many times I question the reason for life and dealing with DLA refusal only goes to fuel this. I have been and am still suffering. I am not lying.

Please have a look again at my form. I want to get better but have no choice but to have half of my head replaced. Hopefully after that I will never have to deal with this system again but until then it is might right to appeal. I do not want to feel guilty about having a good day as I have so many bad ones. If this infection was in my leg it would have been amputated and my rate of survival much better than it is now.

I am so confused about my dizzy spells that I am not sure whether they come from the holes that I have or from the PTSD. All I know is that I can’t cope with getting a letter saying that I am too well to get DLA – how many times do I have to nearly die before I qualify to be that ill?

I have also enclosed the latest letter from the Plastics department which shows that I will have to have the whole of the titanium and bone graft removed (I will show this area on the photograph). I am only being operated on in July to reduce the risk of re-infection and this will be my last chance. As this now includes vascular surgery removing veins and tissue from my forearm in order to try to get a good supply of blood.

The best answer I get from my consultants when I ask whether I will live through this is ‘we hope so’.

I also enclose a letter from my GP’s surgery as apparently the form sent by yourselves was filled in by my notes and not by any recent knowledge of me and my current situation.

Regards,

OK, so I wasn’t brave enough to actually give the doctors surgery the letter I wrote but I did summarise what I had written to the locum that I managed to get an appointment with and go through so of my issues in the 10 minute alloted appointment.

Apparently they had supported my request for DLA, in what form I do not know as I was not privvy to that information. What I do know is that I now have a letter to support my application to appeal to the refusal of my initial claim for Disability Living Allowance.

I had almost given up on the idea of appeal as I did feel quite well for a couple of weeks but unfortunately I am again suffering from dizziness which is so bad that it causes nausea.

It probably is stress again but I have another appointment with the same doctor in two weeks time to see if the codeine analgesic has worked or to bring forward my next appointment with the ENT surgeon.

I am so sick of being sick. And with the stress of everything it is so hard to differentiate between what is going on physically to what is going on psychologically. Either way it spoils the days that I have with my son and that is what led me to make the decision to appeal.

We (the doctor and I) did discuss going back on anti-depressants but it is not really an option that I even want to consider. Although they do help they come with their own problems. Firstly they take weeks to work and then, for me, they take away my fire and passion, which to me is very important. They make me bored of life and that goes completely against what I do and need to feel.

And so, as I sit here and contemplate my spinning world, I at least know that I am doing something constructive and hopefully will get the recognition that without undoubtedely makes me question myself.

Dear Sir or Madam:

I tried to make an appointment this morning to see a doctor urgently as I have been feeling so dizzy everyday and it seems to be getting worse.

If you choose to help me then please do quickly. I will write for my right to appeal the decision by the DLA tomorrow and send it special delivery with a copy of this letter included. If you chose not to help me then please take this letter as a formal complaint.

I do not know if this dizziness is related to my head or my PTSD but I think I deserve to be seen by someone who has an incling about what I am going through. 1 doctor has left, 1 had an appointment on 23 April and 1 sometime in May.

I had not felt that I was able to come to see anyone at your surgery as I have recently received my letter of refusal from the DLA who say that they contacted you regarding my condition. As my dizziness only began after this news which is crippling when you have been as ill as I have I presume that it is from my PTSD which will have returned because of this devastating news. If your surgery wrote this down then you must take responsibility for the outcome. I can not and will not be more ill than I am and have been.

As I think that having 1/3 of my skull removed in July this year, my veins and tissue removed from my arm, MSSA, Pseudomonas and Post Traumatic Stress Disorder is enough to qualify I am very angry by not being supported by this surgery. I have been practically housebound for 9 months. I refuse to be more ill than I am and lie about my good days – they are too precious to me.

I was too angry to even bother to come and see you.

This morning I received a call from my life assurance policy holder who said they could extend my life cover years if I go through the channels including yourselves again.

It was then that I knew that whoever filled in the form for the DLA would also fill in the form for life cover. I also know that I would not get extra life cover because of my condition and this has to be noted. As I have not been told that I can be fixed and that I will survive I should have been given more support anyway. The best I have got when I ask my consultants if I will live is ‘I hope so’. How would the form have been filled in if I had a more regular and less controversial condition that was as life threatening?

I am so distraught that I can not talk and have been on the verge of crying everyday and every hour for the last 2 weeks. My dizziness is getting worse and it feels as if my body has been cut into 5 different sections and they are all rolling in different directions. I feel so drunk from dizziness that I have not driven. In fact I have only felt well enough to drive about 5 times in total since surgery.

If the best I can do is write to the surgery that is supposed to be my first point of care then so be it. I am too tired now but not only is the balance of my life in your hands but that of my son and the rest of my famly.

I am living on my sons inheritance, I am not on any benefits, I can’t work with a one inch piece of rotting bone poking through my head and the chance of infection returning. All I can do is pray that this will all be but a memory after the next lot of surgery and recovery.

Because of my honesty on my life insurance which was taken out after my initial surgery they will argue that my condition is related to sinusitis and osteomyelitis and my son will chance receiving nothing. I know this is not true because I was told that I had to have the operation in order to take away the infected bone from the initial condition and one of my surgeons told me that this infection was completely different. Both my ENT and Plastic surgeons have told me about the pseudomonas and my family were with me at the time and yet it is not written down in my notes once. I want it on record that should I die that it is not from the original conditions of sinusitis and osteomyelitis (one of my reasons for having it removed was so that it could be taken off my life cover for my son).

I have battled MSSA and Pseudomonas following incubation from my surgery on 6th August. I have also grown strep and diptheroids on my wound. Each one of these bacteria can be fatal.

I have been through so many different types of antibiotics because they did not work i.e. resistant.

I had a different surgery to one that I was told. I was supposed to have my brain moved into the hole between the front of the reconstructed skull and this was unable to be done as the dura has become calcified. Yet I still had the sinus obliterated and this is where the infection occured. If the drainage had been left the chance of the infections being able to take such a hold on me would have not have been there as they would have just drained out through the fantastic drainage for which I have had to have 2 follow up operations to correct.

I am scheduled to have reconstruction surgery sometime in July to reduce the risk of infection and if the infection has not returned.

I have been taken off of antibiotics because I was so ill on them that I was in constant pain and was very close to being incontinent. This was only a few weeks ago and so for only 3 weeks since the beginning of August can be classified as good and I am not due to be better for another 6 months at least and therefore you could help me still.

The surgeons and Infection Control do not know if the infection will return. If this would have been in my foot it would have been amputated.

My family have been supportive and incredible throughout every year since 2002. This has an overwhelming bearing on how they live their lives. My father, my mother, my sister and now my boyfriend now stay with me to help but because we do not shout we get pushed aside.

I am appealing for the help that I am entitled to.

Yours sincerely,

Alexandra Jones

Well, I am just too excited.

I am off to sunny Spain tomorrow and I don’t know what to do with myself.

Just so you know I might be too involved with sunshine and open spaces to consider the cyber world but you might get a sneaky look in somewhere along the line.

I have waited soooo long for this that I am scared that it will go by too quickly.

Passport, check. Exhorbitant insurance, check. Letter from the consultant stating all the wrong things – check. Medical bits and bobs, check. Packed yet – noo!

Off I pop then and I shall try to master the art of uploading some beautiful pictures.

Adios amigos

I sat down to write a letter to appeal the Disability Living Allowance today and try as I might I couldn’t.

I feel angry and then I doubt myself.

All in all it just makes me feel so low. I know that I must do it as if I don’t they will just tell me that ‘you should have appealed’.

I want to be as well as I can be when I can be. I have no control over when I am ill but I am not lying about it.

The last letter from Infection Control said that they thought it was best for me to come off antibiotics because of the extra harm they are doing to my body. They also said that they would not necessarily stop any further infection. They could not tell me if any infection would return.

All I do know is that if my infection was anywhere else in my body they would have taken any prosthesis out BEFORE they even began the long antibiotic therapy or just amputated.

Seeing as that amputation was not possible because the MSSA / Pseudomonas infection was in my head I have to live with the knowledge that I can be struck down again before the next operation in July when I will hopefully and finally be well enough to have most of my forehead and the skull up to the midline of my hair removed and completely replaced with titanium mesh.

As you can imagine the flashbacks and flashforwards are not a pleasant experience!

I would love to work but have a one inch hole with protruding bone in my head and not the most exciting prospective employee at the moment and I figure if I could get the DLA it might just help me tick the disability box for an employer and perhaps I could get a little job that could fit between now and the operation.

Anyway, I shall try again tomorrow. I am not going to be more ill and suffer more than I have – I am going to get as strong as I can to get through this operation and if I have to be poor then so be it. I will write about that too!

I went to church last night for a reconciliation service. I was led to believe that this service was for those of us who are just far to shy (not naughty of course) to go to confession on a regular basis in order to be absolved of all of our sins.

As I have mentioned before I am a Catholic but it took some time to get confirmed and mainly because of the confession part of this particular faith.

I have my personal faith and with that is a journey that probably has no bearing on which particular church I go to but I eventually realised that being Catholic was part of who I am. It is part of my culture, part of my families culture and basically what I knew about and felt comfortable with the most.

When you have been very ill, well at least in my case being the mom with 9 lives, you do a lot of praying and when you pull through time and time again it has led me to think about faith in a slightly more gentle way.

As my mother had convinced me that this was a service that I could go to and without having to list ALL of my sins just be absolved I was eager to attend. You see at the beginning of every confession you start with ‘Forgive me Father for I have sinned, it has been ….. years since my last confession.’

Well seeing as I had my last confession when I was confirmed it was 4 years ago and that would take my tally down quite substantially and so I marched off in good faith (excuse please!).

As soon as we got settled and had the Hymn sheets in our hand I realised that anonymous absolution was not going to happen. There 2 hymns down were the words ‘ to be sung during individual reconciliation’. My stomach lurched as I pointed this out to my mother who was also more than happy to have all of her sins systemically removed during a Mass exodus. She had a look of horror about her that immediately dispelled any thoughts that she had pulled me into this under false pretenses and so we sat unnervingly waiting as, one by one, those braver and bolder than us dissipated to the 4 priests scattered around the church. You see there is a confessional but to keep up with the times and to move forward with the open faith policy that is so en vogue you just go and sit next to the priest and hope that the choiristers and pianist keep playing as you mull over your discressions of note.

Neither of us wanted to get the deaf priest for fear of shouting out our woes to the congregation and so we just sat, and sat, and my tummy starting singing along just to make me that little bit more unconfortable than I was before. But eventually my mother obviously had to show her (39 year old) daughter that this was easy and she popped of to share her deepest, darkest truths with the hearing aid cladded parish priest and what could I do but to follow suit and plod along to the back of the chapel to confess my unabashed anger with the world (whilst smiling my nervous twitch Chesire cat grin) to the Spainish priest who I thought would be easier on me.

It is all over now.

We can go back and take those years off of our absolution table and breath in complete piety until the next time.

I must say that it does have such a strong hold on you and priests can give you so much – the way I see it is that if you have a nice, kind absolving priest you can be happy for the time to come until you next get the courage but if you are unfortunate enough to get a hard-lined, rigid man of the cloth it is a bit like smashing a mirror only the years of bad luck go on until you next get the courage to be absolutely absoluted!

I know that we all have dreams but when you are a mom with 9 lives you start to think about leaving a legacy.

Not necessarily a financial legacy although that would be great but something for your children to be proud of.

At the beginning of the year I wrote down my bucket list for 2010 and in it I have a couple of things that I am working on.

I want to start the first Globally Responsible Community. Working on recreating communities in areas where they can not only help themselves but they can help others too and so, for my birthday, I set up another blog which I hope to get underway after the Easter break which will explain and expand and work out the way forward for the project ‘Piotopia’.

I am not so bold that I think that I have the ability to change the way the world works but I do believe that we could all be doing something a little more proactive, a little more fun and a little more together and so I am going to use the time up to my operation to finalise the business model and get this project underway.

I have been thinking about how it could work for around 7 years now so it is not something that I take lightly and unfortunately have been unable to forget about it altogether – it is there tapping away at the back of my head!

I have lots of things that I can be proud of in the past but the happiest times of my life have been when I am actually doing a job that I am proud of.

During really dark times of illness it is the legacy that I think of and that keeps me going and now that I am in brighter days it is the legacy that I shall be working on.

Nah, couldn’t, wouldn’t, just smiled at the smiley group!

I just knew that I wouldn’t be strong enough to ask. What is wrong with me?

I think it is because I know that they get so defensive when I ask anything that would even diminish their bright and shiny lights. I get scared as these are the people who are treating me. They hold my life in their hands. I am weak.

Not to say that I am not happy. I had a wonderful day and will continue to feel as wonderful as I can whilst I can.

But to confront the demons whilst I have my Cheshire cat grin and a hole in my head just ain’t gonna happen, no siree.

They (ENT and Plastics) have discussed what next and I shall have the cranialization again and take all the bone graft and the titanium away and replace it all with titanium. After speaking to the Neurosurgeon. They will take veins and tissue from my forearm and put them from temple to temple behind the titanium and just pull the skin together on the outside. Full operation over 6 hours. July timescale – less infection.

Time to get fit and enjoy the next few months.

At first I was afraid, I was petrified
Kept thinking how I would get through with these bugs inside
But I spent oh so many nights knowing how you did me wrong
And I grew strong
And I learnt how to carry on.

If you come back
from that nasty place
I’ll just defend myself with medicine,
With dignity and grace
I will arm myself with muti
Antib’s will be my key
If you thought for just one minute
You’d be back to bother me

Go on now go
Get out the door
Just turn around now
Your just not welcome anymore

You were the one who tried so hard to make me die
I used to cry
But now I hold my head up high
And you see me somebody new
I’m not that chained up little person
I’m here in spite of you
I’m looking forward to my life
Without you in my sight
I will survive
I will survive

It took all the strength I had not to fall apart
I used all that stregth to pray to God with all my heart
I have children to defend I will fight you to the end
I will succeed
There are things I feel I need
to do and see, to love and feel
I have a legacy to leave and you don’t show in that deal
I have lots to say and do
I will so get rid of you
Just say Goodbye
No, don’t even think to try

Go on now go
Walk out that door
We all we beat you
Get rid of all your standing for

You were the one to hurt my family the most
I thought I’d die I will no longer be your host
You will see me
somebody new
I’ll find some natural aided way that I can combat you
I will not be alone
My life you will not own
I will survive
I will survive

Yay heh!

Firstly, I must be brave enough, I must be brave enough – mantra for the day.

So what should I ask my consultant today?

I will write this down as I think and this list is never exhaustive and never enough as I have learnt from past experience. I almost always have a list and am almost always never brave enough to ask everything on it.

I nearly always take someone with me for a couple of reasons. One I can’t remember everything they say and two, I need back up!

I always have a smile on my face (it is my version of a nervous twitch!) and therefore everyone assumes that I am the happiest person and the most stupid person and the most naieve person and the most weak person just waiting to hang onto every word that they say as Gospel.

I love every single one of the people I see just because I am still here and, regardless of what has happened, that is most important to me. The thing is I also have to listen to them all individually contradict each other, in fact, I have had to a couple of them fighting in front of me and therefore I realise that although each and everyone of them are doing their best that perhaps they are not always right.

You see, when you are incredibly vulnerable, you become reliant on these people and you have to trust them. The same, I am afraid, does not happen in reverse.

I have to take what they say in the 10 minute consultation that I have waited hours for in the waiting room and usually weeks (sometimes months) for in my head and live with it.

I don’t get to go away from what they tell me. I don’t get to go home, relax and think about other more wonderful things over a glass of wine. I have to live with and try to make sense of it until my next consultation.

I do try my best to be optimistic but sometimes I feel the raging bull appear as if by magic and not only do I have to suffer but my poor family have to deal with it too.

And so as I sit here my mind becomes blank and all the questions that I have been ruminating on over the past few weeks disappear. I shall go and have a coffee and get on with my morning. I shall come back to this and write the questions down when I think of them
—–

I had the last operation to cut out any residual infected or necrotic bone from the original osteomyelitis because my forehead was so thin. I had never been diagnosed with MSSA or pseudomonas before and the disease had never gone through the skin and caused a wound, in eight years. So this is definately a different infection that was (on the balance of probabilities seeing as I couldn’t have got up there myself and put pseudomonas an HCAI or found in the soil or MSSA for which I am constantly being swabbed for) caught during surgery. Right?

Just because I now know that it failed because of infection I want to ask why the operation that I went in to have was different to the one I came out with.

I was told that I needed the operation (by neurosurgeon). It was not for cosmetic reasons. I was told the plan was to give me a cranialization whereby the cut would be over the top of my head from ear to ear and that they would take the top slice of a part of my skull at the back (we have two slices, a bit like a sandwich!) and fill the hole left by taking the necessary part of my forehead away (should have asked to keep this for the grandkids!). Bone was better but I am aware that you had a piece of titanium mesh at the ready just in case. You were going to pull my brain forward and stitch it into place in order that there was no gap between my brains’ dura and the new skull and I was getting the last piece of necrotic bone from the back of my frontal sinus taken away for this to happen and that the wonderful drainage holes (that my fantastic ENT surgeon had given to me along with the best time in frequent years) would be blocked in order that the whole unit (my skull with brain inside) would be closed to infection.

Why then did you take a (double) piece of very good bone above my hairline and replace my forehead with that and the good space with titanium?

I know that the back of my sinus you found to be very tough and calcified (almost bony) and therefore were unable to move it. So why, oh why, did you block up my fantastic sinus drainage????

It left an empty enclosed gap just waiting for an infection to happen and was exactly why you said you couldn’t leave my brain where it was in the first place!

Why was I moved the (next? – sorry morphine assisted forgetfulness) day following my operation from an open ward to a side room after one of the nurses whispered to me that I had an infection?

Why was I told that one of the elderly patients in the shared room had C-Dificile?

Why was the shared ward then deep cleansed?

What infections have had to be dealt with since then?

If you suspected pseudomonas why hasn’t that been documented?

Why did I have to wait so long until I was sent to Infection Control and people started monitoring my blood count?

I was at home on Flucloxacillin for 3 weeks post being in hospital on the same plus more antibiotics – why was I not blood-tested at all during this time until I was so sick that the nurses (who were giving me the antibiotics 4 times a day) refused to medicate me and sent me to A&E where I was given an ECG as I was getting major trachicardia (heart racing to a techno beat) and blood test which stated that my CRP was over 30 (the normal rate is below 5 and even when I looked like the Dora the Explorer helium balloon was still low). Only then was I put on different antibiotics (as the Fluclox obiously was not working i.e. resistant to the bug I had)?

Why was the Picc line that I had inserted not monitored correctly? I was unable to walk and talk at the same time and out of breath constantly from October until January and after it had been pulled out of my heart by 6 centimetres. I was told by the nursing team who had been told by the plastics team that you were confident that I was not having any of these symptoms from the picc line and left a message on my phone to tell me so even though I hadn’t seen anybody about it.

When is MSSA re-classified as MRSA? I went through many different types of antibiotics that didn’t work (is that not resistant?).

Out of the whole reconstructed area how much is salvageable?

I can see that on one side of the open wound the bone and skin is coming away does that mean that the hole around it has a good blood supply and that I am dealing with an inch wide space or is it the whole of the area (and I am scared to ask – more?) is damaged?

I understand that you can’t graft skin over dead bone and into a space that is not there but what is the plan now?

Why does everyone keep referring to problems when that part has been dealt with (again my ENT surgeon has had to reopen and redo his last wonderful job and therefore fixed the sinus bit) and we are now dealing with a hole caused by an infection called ……………. (please write them all here!)

If you are not honest and don’t write the infection down it may affect any life insurance that I was honest enough to admit that I had previously on which had said that my brain tumour had been removed, suffered recurrent sinusitis and osteomyelitis and which was the most pressing reason for me to go for the reconstruction in the first place – please be honest as I know this is different I have been told that!

The MSSA/MRSA/Pseudomonas/C-Dif (please delete as appropriate) infection/s that I have – can they be completely eradicated.

These are just some of the more complicated questions that I would really like answered but I will probably just go in and smile : – ).