4 years and more in my life

June 2007 was the 2nd Anniversary of the loss of my soul mate. As a record for myself, but also as a way to put many of you who read my blog ‘in the picture’, I have written this post which goes a little way to explaining just what has happened in my life since 18th June 2005. Many of you will have read the odd bits here and there so this may just help to fill the gaps!

On Sunday 5th June 2005 my partner, soul mate and best friend of 10 years was taken to hospital with what they thought to be pneumonia. He was in hospital for a week and when I spoke to him on the morning of Saturday 11th June 2005 he was feeling much better. The doctors were still keeping an eye on him but he was sounding much more like the ‘old’ D. That was the last time we spoke.

At about 7pm on Saturday 11th June D had a massive heart attack. He was rushed to Intensive Care where they advised us he had blood clots in his lungs and right leg, his liver and kidneys were failing and his heart had suffered severe damage and also had a big clot on it.We went through 5 days of being told any moment they would turn the machines off but then he would make progress so they would hold off and see how things went for a little longer. On Friday 17th June 2005 the doctors advised that they needed to do a brain scan. The news was devastating.

At some point during the week a clot had travelled to his brain and he was now severely brain damaged. They advised us that they would do another scan on Saturday to make sure, but that the machines would be turned off in the evening.

D didn’t make it that long. On the Saturday morning his heart had begun to stop and he passed away shortly after 11.30am Saturday 18th June 2005.

D’s funeral was held in Hull on a sunny Monday afternoon, June 27th 2005…

“Lost love is still love. It takes a different form that’s all. You cant see their smile or bring them food or tousle their hair or move them around a dance floor. But when those senses weaken, another heightens. Memory. Memory becomes your partner. You nurture it. You hold it. You dance with it….Life has to end….love doesn’t“
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On Monday 4th July, just 1 week after D’s funeral, I returned to work but, sadly, found it all too much. I decided to take another week off and then hopefully I’d be able to ‘hold myself together’ enough to work a whole day! Unfortunately on Saturday 9th July 2005 I was assaulted outside my flat, and so begins the ‘story’ of my health problems.

After talking to the police I was taken to hospital where they informed me I had broken the navicular bone in my left foot. They stuck me in a temporary cast (see above) and I returned 3 days later for a ‘normal’ plaster cast.

If only that had been the end of things! 5 days afer the initial break I spent a sleepless night in agony in A&E and was diagnosed with DVT. Lots of scans, blood tests, injections and tears later I was sent home with a shiny new boot…

This cast was much more comfortable and better for me now I was dealing with the clots as well as the break. Everything seemed to be going ok, I was on blood thinners and had to visit the hospital nearly everyday for a blood test but I was ‘hanging in there’

After 6 weeks I had another X-Ray and the consultant advised me that my break wasn’t healing and I would need surgery, due to the clots the best thing he could suggest was a further 3 months in the Aircast boot in the hope that it would heal eventually as surgery was too risky!

Many things happened between this appointment and March 2006 including many hospital trips, a weeks stay ‘inside’ due to serious kidney problems, a very special meeting in August 2005 with some wonderful friends, a trip to California…nothing was going to stop me getting there, not even the clots…and it was well worth it. If you ever get chance to visit Yosemite National Park GO!! So many things! But the next major update on the leg didn’t happen till March 2006 (remember I am still in the ‘boot’!).

I had a CT scan and returned to the Consultant for the results. He told me “It’s a little more complicated than we first thought, I need to refer you to an ankle and foot specialist”. I was given my 3rd ‘boot’ and told the wait could be sometime.

October 10th 2006 I finally got to see an ankle and foot specialist! WOOHOO!!

He explained that I have to have extensive surgery on my foot, removing bone, shaving bits off other bones, inserting metal plates and pins, stitching tendons on to metal plates…I stopped listening at this point! Yuk! What it did mean was I was back on a waiting list…one possibly 18 months long!!!

November was a very, very sad month (

Health wise – Around the 20th November I managed to over do things and some serious damage was done to my knee. It meant a trip to A&E and back on the crutches. Since then my left leg has looked like this…

Things didn’t pick up and on 10th December I was admitted to hospital after I blacked out 4 times at home. After (many) blood tests, lumbar punctures, scans and more scans the ‘diagnosis’ was inflammation on the brain caused by an infection which was treated with antibiotics. They also believed I had Post Herpetic Neuralgia and I was put on lots of painkillers to manage the pain as well as various tablets to treat nerve pain. Christmas 2006 was spent in hospital and I have to say it was probably the worst Christmas I have ever had!!

2007 so far hasn’t really seen much change. I still walk very slowly on my crutches, I have various ‘aids’ fitted to help me around the house, I took delivery of a temporary wheelchair last a couple of weeks ago which was hard to give into at first but does make trips out with friends and family much easier!

I saw the Chronic Pain Team regarding my PHN, which turns out is not PHN! I recently started the new medication and hope to have the ‘procedure’ the consultant has recommended to help alleviate the pain and symptoms, sometime in May or early June.

My leg – I was lucky enough to see a surgeon at Bradford Royal Infirmary in February who recommended I be sent for a course of extremely intensive physiotherapy in the hope that I can regain some strength in my left leg and to try and rectify the damage done to my knee. I will return to see the surgeon in 3 months, 17th May 2007. At this appointment he will assess how much progress I have made and whether I will need surgery on my knee as well. I will then continue with the physiotherapy until I am able to walk unaided. Once this has been achieved, and as long as there are no other complications in the mean time, he will be happy to take me in and operate. This will probably be towards the end of this year.

So that’s about it!! I’m suffering from the side effects of the new tablets at the moment but it’s good to have things to look forward to! I’ll be seeing my bestest friend early May which is the next big thing on my calender! )

UPDATE: 9th July 2007

Today is exactly 2 years since I was assaulted. It’s a mix of emotions really. I can’t believe that I am still on crutches and struggling with my walking. I have had many ups and downs since this all began and I am currently suffering again with the pains and symptoms I had in December. Some of my tablets have been increased so hopefully I will be feeling better when they kick in.

This week will be my 4th Physio session and things seem to be going pretty well. I can now wear just a support bandage around the house and managed to walk short distances outside with just the support bandage and my sandals on, I still have to use my crutches both indoors and outdoors. The pressure of a shoe on my foot is too much so sandals are the only thing I can wear at the moment and even then I need a thick sock on to take some of the pressure of the strap off my foot. My knee is doing well, the first physio week I could only bend my knee 72 degrees but the 2nd week I managed 90 degrees…the physio was really pleased and said I was doing well.

I go back to see the ankle and foot specialist on 9th August to discuss the surgery but I think it will be a case of a little more physiotherapy before he will do anything. The photo on the left was taken 9th July 2005 and the photo on the right is the most recent shot of me…

There are times when I really struggle to keep smiling and thats when I think about all the things I have to look forward to in the coming months. 21st July I will be meeting a blog pal which is very exciting! I’ll be staying at my Mum’s then for a few days and at the end of that week MBF will be picking me up for our trip to the Nurburgring in Germany! I am really looking forward to getting away, seeing some different scenery and meeting new people )

Well, that’s my 2 year update! Thanks to everyone for the love, support, thoughts and prayers since all this began. I couldn’t do it without you all! xx

Update: December 2007

Another year is almost over and there is a lot for me to update you on!

The first thing is that I have moved! For many reasons including my health I had to make the very difficult decision to give up my flat (and independence) and move somewhere that provides me with a lot more help and support. I’ve been here just over a month and so far everything is fine! I have found everyday stuff is much easier to cope with and I now have people around who love and care for me which makes a whole world of difference!

The second thing to tell you all about is the addition of a new set of wheels to my life! Meet my wheelchair…

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It took me a very long time to except that I needed a bit of extra help getting around but finally I gave in and towards the end of November I collected my new wheelchair. I have to say it has made days out much easier and, thankfully, I have very understanding and caring friends and family who are always happy to push me )

The chair leads nicely on to an update on my health. After months of misdiagnosis I finally thought I knew what was going on when my blood tests showed I most likely had Systemic Lupus Erythematosis. I started steroids 7 weeks ago but sadly they showed very little improvement and on visiting my rheumatology consultant he advised me to begin the gradual decrease in the steroids.They are now not absolutely certain that whatever I have is Lupus!

I have been referred to the best place for those with Lupus, St Thomas’ Lupus Centre in London. Whilst I am pleased to be given the opportunity to attend this centre it also holds some sad memories for me.

St Thomas’ hospital is where D was treated and I spent many hours wandering the corridors late at night whilst he was in ICU. Whilst the trips to St Thomas’ may well start off being quite upsetting I think it may help me to overcome the upset I have even when I see the hospital from a distance. I know that either MBF or a member of my family will attend each appointment with me so I won’t be alone.

I also have some good news on my foot. My rheumatology consultant has given the orthopaedic team the go ahead for the surgery I need. I am hoping in the new year I will get to have the operation I need and maybe then we can start work properly on getting me walking better!

Thats it for my health stuff! One great thing to happen since my last update is my best friend and I had a great holiday on the Isle of Mull in October! We were extremely lucky with the weather and we got to visit some wonderful places! We can’t wait to go back again next year! Here’s a snap of us by a waterfall on Mull…

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I’m sure I’ll update this again in the new year! Hope you all have a lovely Christmas and best wishes from me for the New Year!

Update: 31st January 2008

I finally had my appointment with the private consultant about my foot just over a week ago and it went really well. I could be having surgery in as little as 3 weeks! As I have trouble remembering things I took notes so here is a list of what the surgeon and I went through…

 

• I will need a bone graft, normally done from the hip but due to the problems with my knees he doesn’t want to make things any worse on that leg so the graft will come from the shin in my left leg.
• The bone will then be placed over (or in?) the break in my foot and attached with screws.
• The operation has around a 70% success rate
• I’ll be staying in hospital for about 3 days…or until I can ‘hop’ around on crutches he said!
• I will be back into the ‘boot’ for 6 weeks, non weight bearing and it will take around 3 months before he can tell whether it has been a success or not
• If it doesn’t work then there is nothing more he can do and I will basically be left how I am now (so in theory no worse off than before the op). 2 walking sticks and the slow lane for me forever…lets hope not!
• As I have had a blood clot before and am now more prone to them due to other medical conditions, I will be on heparin (blood thinning) injections for the 6 weeks after the operation and may have to go on warfarin for a further 3 months but won’t know that till the boot comes off
• I also asked why my left foot/leg goes purple whenever it feels like it. He said that it was most likely post DVT change which is actually good news for me, at least it’s nothing to do with Lupus (or any other connective tissue disease)

So, for now we are staying positive and hope that this will work. However, the surgeon has made it clear that this will not have a dramatic effect on my current very slow walking pace…I think most people are used to me now though

I’ll update here when I know the date of my surgery…and I’ll do my best to get you all a few gruesome photos when I’ve had the op

Update: 17th April 2008

As expected, I didn’t really get any answers…I just had to have LOTS of tests. The consultant was VERY thorough and both MBF and I were really impressed by him. He asked many questions I have not been asked in the last 18+ months and did some tests I had not had done before. They took lots and lots of blood and ordered a lot of disturbing tests on my heart which I go for in a few weeks.

He said that until he got the results of my tests and until he was able to view the MRI images himself he didn’t want to say what it could be but that there were ‘a few’ things he thought could be causing my symptoms.

So really I am no clearer BUT I am feeling like I will find out when I return on the 12th June for my results. He did mention that I could have developed some small blood clots in the major arteries in my neck. These arteries are the main blood supply to my brain and he has arranged for me to have an ultrasound scan of those arteries.

If it is anything to do with clots near my brain, as I have now been unwell for over 18 months, I will sue the a$$ off the hospital that originally treated me!!!!

Apart from the above the day was a little distressing for me having to return to ‘that place’ and when I was sent for my Echocardiogram (thingy!) I had a little bit of a breakdown/teary moment as that was one of the last places I went with D (so he could have some tests) when he could still talk When I return for some of the other tests I will have to go to the floor that has the intensive care unit that D passed away in on ( It is so silly being upset by a building but it is very hard not to think of all that happened there

Well, I think you all know now about as much as me! Further updates will appear here soon.

Update: 14th August 2008

I have some very, very good news!!!!!! I will be going into hospital on 8th September for surgery on my foot/leg. I FINALLY got a date 3 years, 1 month and 3 days after I broke it! I should be in hospital for about a week and then back on my crutches and in a boot again non weight bearing for 6 weeks then I get to find out if it’s worked!

Update: 8th September 2008

Surgery cancelled

Update: 9th October 2008

Surgery cancelled, again

Update: 15th December 2008

I have finally been given a diagnosis. I have Lupus (SLE) and Hughes Syndrome. I will post more details over the next few weeks.

Update 20th January 2009

WOOHOO! Finally got a new date for surgery – Monday 9th March 2009!

Update: 9th March 2009

On Monday 9th March I was scheduled to finally receive the operation I have been waiting over 3 years for.

At my meeting before my operation with my surgeon I informed him of my diagnosis of Hughes Syndrome. Without hesitation he said there was a high risk, because of Hughes and because I have had a previous DVT, that I could die having surgery today. There would also be significant high risk of another DVT or worse a pulmonary embolisim for the 3 and a half months my leg would be imobolised.

My surgeon, Mr Ritchie, said he was unable to make the decision for me but that I needed to think whether or not the pain I have is worth risking my life for. I asked him what he would do and he said he would NOT have the surgery. Needless to say by this point, especially as I was on my own, I didn’t know what to do and was in a bit of a state.

Mr Ritchie said I had about an hour to make my decision.

I called my Mum who didnt know what to do. I called my Dad who was just concerned that I would be on disability benefit for the rest of my life if I didn’t have the surgery…I was getting no clearer about what to do.

Then I spoke to MBF and he said he wouldn’t go ahead with it, the first person to offer me a decent answer.

After speaking to MBF I called the Lupus clinic and spoke to Professor Hughes, the guy who Hughes Syndrome is named after, and he said he wouldn’t have surgery unless it was a matter of life/death.

I also had a wonderful call from the other side of the world….thank you R for talking to me and giving me your opinion x

I then spoke with the surgeon again and got my Mum to chat with him as well…not that that was much use as Mum still didn’t know what to do and my surgeon refused to sway my decision either way.

I asked what else could be done if I didn’t have surgery and the answer is nothing Not even physio. I will probably walk with 2 walking sticks/crutches for the rest of my life

So, we are going to look at a special brace which would come about half way up my lower leg and will support my foot like the aircast boot did. It’s made by the same people and has a puffer thing to inflate/deflate depending on how my legs feeling. But, unlike the boot, I can wear a shoe over it (one foot will always be bigger than the other LOL).

I am also going to consider going back on crutches instead of walking sticks as that makes things easier and makes me walk slightly quicker (still not as fast as normal peoples slow pace though lol). I am looking for foldable ones with nice handles…found some which I like for £90 but will keep looking incase I havent found the best yet!

Update: 16th May 2009

Went to the Lupus Clinic today and was told the discolouration in my feet is probably Raynaud’s Syndrome…so that add’s incurable disease number 3 to my list!

Update: 17th June 2009

I finally received compensation for the assault yesterday. No amount of money can really make up for what I have to live with from day to day, but, it has made me feel at least some sort of justice has been done…even if it did take them almost 4 years to make a decision!

Update: 4th November 2009

It’s been a while since I posted an update here so I thought I better fill you all in on how things are going.

I continue to have problems with bad headaches and extreme fatigue some days. I have an appointment on the 15th November (a Sunday believe it or not!) to see a Neurologist to discuss whether these headaches are down to the Hughes Syndrome or whether they could be something else. I received a copy of my last MRI report to take with me to this appointment and, completely by accident, a copy of the results of a carotid doppler I had were also attached which informed me that I have an irregular heartbeat, probably due to heart disease…so much for my test results coming back fine…I’m not sure when they were planning on mentioning this to me but the doppler was done in May 2008! I should be able to find out more from the neurologist on the 15th so I may well update here again after that!

Other news…my sister had a baby on the 1st July 2009…my new nephew, Mason, is always smiling and is already getting used to the camera! I think lots of pictures of him will be appearing here over the coming months!

And finally, it’s now less than 2 months to our BIG trip. MBF and I arrive in Sydney on the 29th December and we have tickets booked here for New Years Eve to watch the fireworks…

We then spend 2 weeks touring the east coast of Australia before heading to both North and South Islands of New Zealand…despite all the medical issues this trip throws up I am really excited! Fingers crossed I get some half decent images!