I know I haven’t been writing on this blog for some time now but I have been writing!

I have just been concentrating on the positive things that I need to achieve and want and am able to do. I have been collecting my thoughts, spending time with family and friends, dreaming, and fighting yet another infection!

I went to see my consultant and in spite of the infections they are hoping to do the operation to re-repair my forehead, only this time they will use vascular surgery and take veins and skin from my forearm and I am positive that this will work.

Although I can now drink my coffee through the hole, I have threatened to appear on Britain’s Got Talent with a stream of multicoloured smoke if I don’t get fixed soon.

At this moment in time I am awaiting a date to be co-ordinated for the surgery to take place as it has to fit in with all of my consultants.

I am alive! I am positive! I am grateful!

Thank you.

Osteomyelitis is infection of the bone. Usually caused by a bacterial infection, quite hard to initially diagnose and usually found in the long bones of the body.

Although it affects children and adults, it is usually the result of another infection that gets into the blood stream.

I have added a link to a far more knowledgeable and reliable source on the link section but want to just share some questions to ask and things to be aware of for anyone who is diagnosed with osteomyelitis.

Ask for your CRP levels. These are the C-reactive proteins that measure the level infection in your body. Usually under 5 in a healthy adult, they can be increased by other conditions but you will generally see these levels coming down once you have been given the correct antibiotics to counter the infection.

Make sure that you get your blood levels taken on a regular basis and that these are going down. Your bloods should be taken at least once a week and monitored to ensure that the antibiotics you are taking have taken and are continuing to take effect.

Make sure you take a detailed list of all the medication you are taking and read and take note of the side effects that the antibiotics have. You may have to take them without food or avoid dairy products for a while. This is all very important as you want the antibiotics to work and for you to recover as quickly as possible.

Be aware that some antibiotics actually make you feel worse than you did before becoming ill. If you take care of yourself and increase any vitamins and minerals you may need this should help you recover once you have completed your course of antibiotics. But make sure that they will not interfere with your medication.

Make a diary of your food intake as this might be altered due to the effect of the infection and antibiotics. Be aware of what you are able to eat and make sure that you do as your body is telling you. There are some people who have documented that they become gluten intolerent during infection and have chaged their diet accordingly. This is very personal but be aware of your body and try different food groups that can help you get through this period without as much pain and to help with any stomach and bowel problems that you may have to deal with during the long period of taking medication. Please consult your doctors if you are concerned at all about any problems such as diarrhea as they may have to change your antibiotics to combat colitis and they can also do a full blood count and suggest any supplements that you may be lacking due to the medication.

If you have an open wound make sure that you are cleaning it in the correct manner. Ask for help by somebody in the infection control department if you are unsure as someone who is not specialised or used to dealing with Osteomyelitis may not give you the correct advice.

Ask questions and do not be afraid. I know that there isn’t that much help for you as there would be with more infamous illnesses but this can be beaten. There are loads of us that have lived with, conquered and quashed this disease. Some time and time again and some forever.

Be positive. Be determined. Be honest with yourself and rest when you need to rest and be well when you can be well.

The below is a picture of my open wound.

Do not scroll down the page if you are at all squeamish as it shows the pieces of bone coming through the necrotic skin tissue.

DO NOT LOOK AT THE BELOW PHOTO IF YOU ARE SQUEAMISH

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

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!

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!