Still here....

Hi there folks,

I am still in the hospital, had to have some antibiotics and now had increase in treatment for my autoimmune vasculitis (which is annoyingly still called auto-immune vasculii of unknown origin....) come on. Please give me a break. apparrently it willbe classed as such until all tests are bak inclding the latest - i haev now got to have nerve conduction studies and muscle biopsies. Once these are back if they concur with the results tatsuggest Churgs it will be that, if they cocur with the results suggestng Wegeners then i will hav that if it concurs with nothing and is still ambiguous i will be labelled with Behcets, which is a disease of exclusion. it usually affects young people in their mid-late teens/20'slike myself with progressive symptoms much like i have had and oftn gets mis-diagnosed as mental health issues for lengthy periods of time until someone finally clicks the zigsaw bit together and sees you as awhole person or you move to a different hospital like i did for a second opinion...


I have a fabulous vasculitic pulmonologist, vasculitic dermatologist and a neuro, an endochrinologist, rheumtology doc and ortho doc who dont specialise in vasculitic disease but who are in the background helping whenever there is an issue with whtever system lol...

I feel much calmer with my current team, my gp is happier we have some reasons/answers to what has been happening as do i, i just hate the unknown element. Churgs/ wegeners can be devestating diseases and very life limiting especially whn diagnosed late on which mine definately has been. I have been reliant on night CPAP (positive air pressure ventilation)at night now and up to 18 hours during the day at times due to the damage in my lungs from delyed diagnosis. I am also reliant on oxygen 24/7 at between 1-4 litres/min which has recently been increased to 8litres/min as an inpatient however ,y concentrator currently only goes to 5 zo thus we begin the ween down which is harsh, and can sometimes lead to a few setbacks but i hope this time will go well.

I am awaiting physio/OT guidance on wheelchairs so that i can get back to my family for the festivities... I stillhave presents to buy too hahaha...its gonna be a busy week/wekend isnt it lol! I am hoping that i cn borrow a decent enough chair from someone without having to hire one fo a small slice of my soul..looking at some prices quoted you have to be loaded to afford a decent enough one its like the old plasticy NHS issue glsses you used to hate wearing as a child, prefering to squint instead lol, thats where i am now except without the chair i can stand/walk and cant get to my folks therefore cant spend christ,as with my family.... i'l get ther just got a few obsticals in the way first.

Once there i have to tryand wear my drs mask lol will tell the nephew thats what it is anyways, gotta o that to avoid any additioal airbourne germs that i could pick up, my immune system is so lethargic now its been hammered with chemotheapy agents and high doses of sterods that a simple cold could overwhelm my system putting my life at risk.

I recently caught a UTI frommy indwelling catheter, it didnt give me a temperature until it was so bad i had pus in my urine.i then got a temperature, rigors andfelt dredful. soooooo i my feel finebut cannot get complacent with i all at all... i will obvioisly kiss the boys goodnight and give them cuddles etc but will hve to be careful how long the mask is offfo to prevent any unwanted infetions as i definatey dont want to end up at my paents local where they dont know me...

so sortin out the dottng of the i's nd crossin of the t's at the moment its time consuming and at times far to political(i spread across2 primary care trusts of which neither really wants to fund my various treatments...)thats before we ask themfor a very specialised Behcets drug usually ued in B and T cell lymphoma/leukaemias.... its a tricky situation.

On the homeward straight now icam see the light at the tunnel end, so herecomes christmas.... mum/dad, stick my stocking on the wall lol!!

Speak to you al soon I may have results of muscle biopsies andnerve condution by then you nevr know stranger things have happened at sea as they say so i will bid you all a fond farewell for now, and wish you all wherever you are and whatever you are doing a very merry christmas, and aprosperous, happy and for lot of us hopefully a healthier new year.

Allmy love to you all this christmas,
Rattles Xxxxx

Well, well, well.... when random symptoms equals very bad news...

Hi All,

Recently I have been bed-bound and struggling a lot with painful joints muscle weakness and ulcerations, all this coupled with worsening chest symptoms and kidney issues etc.... I had several blackouts, respiratory and cardiac arrests etc.....

All since my last post. Well. I am again in hospital after another fight to beat an unknown disease slowly damaging/killing my organs, I have met some amazing people through a small charity called Vasculitis - UK (Stewart strange trust) which is great. If anyone can support this charity even sending a penny will help.

Trying to run a charity helping desperate people and all by volunteers, every penny they get goes into helping people with leaflets and info, as well as that all important research. I am a biomedical scientist my main area of expertese being haematology.. once I get some health back if i can use my research brain to help others like me answer the most important questiom of all (apart from am i gonna die...) is Why me? There is a possible genetic link. I am now determined to get som recognition for this... Lord Robert Winston just happens to be the chancellor of my uni, I think a letter or two to him about my and other like me's situation may be in order..... it may help - he coud getthe uni to research into links as heis a genetisist after all!!

Anyways i amreally tired. condition is wearing me down and I cant start my chemo until i have got rid of my infection. I am currently in a side room and onlycertain people are allowed to visit which is just unfair.... hoping infevtion will soon go and then i can start my chemo nd start kicking this diseases butt!!!

Will write another post tmoro if i can about what its like living with what feels like another person (to use a friends words a siamese twin) pulling you in one direction whilst you wanna go somewhere else... I will explain that another time - its just very very draining.....

Hope everyone else is well and doing ok,

lotsa lv Rattles XXXXXXXX

Visitors :)

Hi Everyone,

Its been quite lonely the last few weeks waiting for physiotherapy, stuck on bedcare no company except phone calls and carers, so i had a huge surprise today when two great friends came to visit on the train :)

after a couple of hours to chatter and laugh, we had a take away and enjoyed catching up!! Ive missed that so much.

so today has been a good day. Forgot all about the nightmare situation for a while which was nice. I still have the odd day like the other day I watched the film knowing and got a bit freaked out - couldnt tell you why kind of made me think i suppose and it freaked me out a while. I am slowly getting stronger in all areas except the weight-bearing/walking bit - hopefully the physio can help -once it all gets sorted and they visit me at home. fingers crossed this wont be too long now.

will keep you all posted anyways. Thanks for the visit guys - love you both to bits it was a lovely surprise and i am so lucky i have such fabulous mates.

all my love to all - will post again soon

Rattles xx

Overdue Update (poor neglected blog...)

Hi everyone,

Hope all is well with you all, I have soooo much to catchup on its been too long - for that I can only apologise.

Some people know that my blog used to be open for anyone to comment freely on but this was abused by someone and as I result it knocked my confidence and stopped me feeling I could be as open and honest about everything that has been going on without the fear of this person continuing their messages etc - I have swapped to comment moderation for this purpose so I can Still see any comments but can moderate them before they appear on my wall. I would hate anyone to feel they couldn't start a blog of their own for fear of the same and will now continue blogging in the open, honest and frank way i always did before it all started.... So here goes nothing!!

Some folks who know me personally know I am a Christian, I have been tested to the extremes in recent years. Everything felt like it was falling away like ice melting on a glacier. I worked hard and everything I achieved meant nothing as it slowly crumbled away. I wasn't sure what to do, lost my job as I was so poorly much of the time and they got fed up of it. After that came the stark realisation that I had lost my job and still had a mortgage to pay. Blind faith (and possibly an element of denial) got me through.

Its continued over the last 3 years to get steadily more difficult to do thing - lack of physical conditioning, not in a routine I did try to convince myself it was anything other than what was really happening - possibly didn't want to believe things were as hard as they were at times - was told I needed a stair-lift and turned it down as - it was my only form of physical exercise etc etc... And so the cycle continued I would at times sit on the 3rd step and cry for an hour as it felt too much to get up the 13 stairs I had - every step hurt. But - I kept going believing things could only get better.

They didn't, I had an accident which set me back by leaving me virtually bed-bound for almost 3months - I recovered and started doing revision and the mountain of coursework I had to do for uni. I did my exams (and miraculously passed 2 out of the 3 - bring it on!!!) Just got coursework to complete for the 2 i passed and 1 other module now... I'm very far behind my peers, They are almost finished and I'm barely started. The credits I can get from the last 12 months will go towards the new style MSc in Biomedical sciences. More fitting I think except that i cant do specialism I would like (thankfully the units I will carry forwards are this subject :)) I wasnt able to start the new course this september as true to form straight after the exams I ended up in ICU!

Since the end of August to the beginning of November I was in and out of hospital. With progressively worsening symptoms. My skin kept ulcerating and was chronically infected - my kidneys and liver started to play up, at one point I was yellow whilst in hospital. My legs were really weak and kept going from underneath me leaving me in the situation where I was and still am currently bed-bound till I get intensive domicillary physio. It didnt stop there - Dermatologists felt I needed further investigations and I found out I have a progressive auto-immune disease.

I have cried too many tears to count recently. I always wanted a family of my own, I see my dear brother with his wife and two gorgeous boys (yes I have a new nephew :) he is so cute but i have only met him once in his 6 months so far - hoping to see him soon as really want to be able to get to my family at christmas!!) I love my family dearly - and think my brother is the best-I have 2 gorgeous baby nephews but I do feel a tinge of sadness too at times when I see him with his little family and realise I may never have that - I may be lucky to find a partner who can deal with things - it seems to always be a stumbling block at the start that never seems to get overcome in any potential relationship - and it tires me when every man I do get close to would like to 'stay just friends...' I want to share my life with someone, whther it be a long or a short life - I just want someone to share it with.

Anyways the new diagnosis I have is to be confirmed in the next few weeks but the doctors anticipate I will gradually become more unwell. now require NIPPV (non-invassive possitive pressure ventilaton) at night to assist my breathing and have an archaeic machine the hospital gave me for this! I am now also on long-term home oxygen anywhere between 1 and 5 litres per min 24 hours everyday dependent on my blood oxygen levels keeping them above 90%. This is sadly not the only change I have had to get my head around. I have a repeat scan (CT) of my chest in 6 months if my condition has deteriorated further they may consider other options - further chemotherapy drugs maybe needed to supress my over-active and very naughty immune system from destrying any more of my organs/tissues. Im currently on high dose steroids and low dose chemo so there is some room for manuvor Im totally terrfied though.

My thoughts vary throughout the day to trying to stay possitive and keep doing my uni work in the hope next september i can restart my course.... I also have my disabled student union rep position to keep me focussed on what other students are having difficulties with/need help sorting out and what adaptions our union may need to do to make the union/uni more accessible etc... I like having stuff to do its been helpful as a bit of a distraction for me on the days i have felt okish and my mind has started to focus on the bad things that are happening.

So that was my first post in a while. I will continue to be as honest and open about the things that are happening here, and will try and be a better blogger too.

Take care everyone and I will post again soon, GP calling me every few days to see how things are going with the NIPPY and stuff so I am lucky to have her keeping such a close eye on things and have her support too.

Speak again soon
lv Rattles Xxx

quick catch up (Sorry its been sooooooooo long!!)

Hi All,

MSc going ok coursework all good marks -exams not so well but I have spent a total of 3 whole months in hospital since september and its been tough going.

I missed an exam in May. Now have 3 exams in 2 days in August. Having a discussion with course leader and student support officer tomorrow (well later on now really lol)

I was elected as the disabled student union rep and my role started at the beginning of this month soits all go even though i have been housebound (well bedroom bound) since may when i had a very nasty car accident. Smashed my knee up quite badly and its still healing grrrrr!!

So thats kinda what i have been up to. Will post more when I get the chance ebtween revision and stuff.

Hope everyone is well Lv Rattles Xxxxx

Really overdue update - idiot drivers should be.....

hi guys,

again i have to apologise for my not keeping the blog up to date...

so whats been happening in the land of rattles? ? ?

as a brief summary for now, i had my 1st lot of exams for my MSc - and after being ill for 8 of the 12 weeks the exam was really hard. I'm resitting it in August now.

Semester 2 started and was full on from the very start. we had a contact week followed by a private/distance-supported learning week contact weeks were great with interesting lectures etc, the weeks between were extremely full on. usually consisting of 5-10 hours worth of e-lectures with questions to answer on each topic and also involved case studies where we had to work out what the patient had, and why we thought it etc - usually by presenting this to the rest of the class. This was just for 1 module which had been split into 2 parts. The other module was a lecture each contact session and planning presentations in the weeks in between sessions. Every contact session following the first one in our set groups we had to present a condition related to the previous weeks lecture. By the end of this semester i don't think any of us get too nervous about presentations anymore lol....

i broke my ankle, then once it had healed went to my cousins wedding and had a lovely weekend break. Then crashed on route back home in the small hours of the Monday morning of my 1st semester 2 exam...
After calling 999 the police thought the car would be OK to finish my journey, i didn't sleep that well that evening. half way trough my exam later that day i had to stop the exam, My knee had swollen to 3 times normal size and there was just a tiny wound on one side of my knee-cap. i ended up in A and E who thought it was probably just badly bruised. after spending a further 4 days in agony and the wound gradually getting bigger and black in colour i saw the on call doc. i was admitted the following day and had to have an operation on my knee :-{ had to have an epidural as well as too risky chest-wise for a general anaesthetic...

had a VAC pump attached for 3 weeks and still in the knee brace now {prob got 2-4 weeks of this left to endure now}. So currently bedroom bound. i cant get downstairs by myself and need 2 people to help me at the top of the stairs at the moment due to neither leg weight - bearing.

i have however read a haematology text book from cover to cover {twice},
Managed to break my iPhone by spilling tea on it and did same to laptop - which is annoying in different ways... several letters on the keyboard are not working when they are pressed... they include the 'h' 'i' 'j' 'k' and 'l' as well as all the numbers with symbols so in order to type anything i have to google 'abcdef' it then correctly assumes i need the alphabet and then its a case of copy and paste things into place... takes forever.

2 lessons learnt over last few months...

the first other people on the roads are idiots at 2am and don't care who gets in their way on their journey, Will explain what happened in accident next time as I'm loosing patience with the copy and paste thing now... gggggrrrrrrrr.

and finally if you crash into the central reservation of the motorway at 70mph {ish} you are indeed lucky to be alive but it really does hurt after a wee while so don't pretend your fine with no real injuries etc as once the shock wears off it REALLY hurts.....

hoping i will be up and about again soon but till then will try and keep my blog up to date to relieve some of the boredom of daytime telly... :-}

Take care everyone and hope your all well,

Rattles Xxxxxxx

Words cannot say enough...

Hey all

I found out a good friend had passed away last week. It was hard to contemplate that someone who had such an infectious enthusiasm for life and always seemed to be creating or doing something even when she was so unwell always planning the next journey etc... I was shocked to hear the news and Shen I read it on facebook it was like an ice cube had gone down into the put if my stomach shock and sadness that I had never had the oportunity to meet Bex in person. Yes we chatted about all sorts and laughed and shared stuff over the Internet!! I went to the celebration of life ceromony which was full of sorrow and
Laughter in equal measures. I miss her

Nothing can make it alright - i felt so deeply for her children similar ages to myself- I couldn't beat to loose my mum and I cannot begin to understand the deep pain and loss that her four lovely children will be feeling! It's taken a while to write this post! It has Been difficult to write Bex you were one in a million and we will all miss you so much.

Rest in peace and breathe easy. xx

Blimey its been a long time..... (sorry).

Hello there, i am still here - sorry for the distinct failure to blog lately. Its been a little crazy at my end.

I started my MSc in september and that has been keeping me busy even though my course is only one day a week the sheer volume of work from one day of solid lectures is crazy. I am at this level expected to do an additional 20 hours of reading around the subject via journal articles etc every week-this hasn't happened on a lot of weeks unfortunatly due to one thing or another.

So the course, i love it its a fab masters course and exactly what i needed in terms of keeping my brain ticking along rather than being fed up and stressed that i wasn't doing much with my days etc. The lecturers and support staff have been fabulous i cant fault them at all. I have been given so much support that its enabled me to get to where i am now - only a few days till my finals for the first semester modules - eek!

So. I ended up in hospital twice during semester one and the first admission was for 17 days meaning i missed two of my uni days and about 8 hours of lectures. I was lucky that the support team when i called to explain the situation sent a notetaker to the lectures for me to take notes on my behalf. I was back for a week and then ended up back in. Unfortunatly the second admission's discharge was hampered due to the unprecedented snow fall at the end of november/beginning of december! I finally got home after another 14 day admission. Again a notetaker took notes for me in my absence. The notetaker is now a regular thing for me if im there or not they will take notes for me which is great and much less pressure for me as i am still not 100%.

I had a mini module taught over 3 full days which im glad came just before the christmas holidays as it totally wiped me out. My group got the best porter prize which was fab as it was thrown together by the 4 of us in one day instead of several weeks mostly due to my being poorly in hospital :(

So the mini module went well, its still ongoing tho the teaching is finished there are a few bits of coursework we have to do some on our own others in our groups etc but this module is fairly straight forwards and has no exam - yippee!

I spoke to the course leader about my absence and catching up and asked to move a module to next year which was agreed as its just too much to catch up on-id missed the coursework deadline hadn't been to the lectures explaining the coursework and also had around 12 hours of lectures to catch up on and a big exam to revise for this module and also had coursework for the other module (not due in till end of jan) and the same catching up and revision for that module. It was not really possible to do it all.

The course leader is lovely and taught me during my first degree so she knows me fairly well. She moved the core module to next year. I had only a few options with what i could move to next year as my course as it is now wont be running next year due to nhs cut backs and the increase in tuition fees staff from nhs hospitals are just not being sent on the course as its too expensive for the nhs budget- the lack of applicant has meant i had to move the core module which will be running in some form next year as its a core module for several different MSc degrees.

Anyway after that ramble, i am currently revising for the one exam i have which is this coming monday. I haven't managed to get my dragon software accurate enough to use in my exam so i cant use the laptop during the exam unfortunatly. My only other option is to use a scribe so i have a session later today to meet her and to be taught what to instruct her to do how to use her etc. I also have a meeting with one of my lecturers to go through a lecture i missed whilst in hospital as its too complicated to fumble my way through-he's going through the 2-3 hour lecture in 30 mins lol!

I have been concentrating on trying to understand the lectures i missed first and getting my head around those before revising all the other ones. Thankfully the support team put a piece of software called read and write on their laptop for me to use whilst i am still waiting for my DSA funding. Most things i already have in some way as they have leant me dictaphone and laptop with various support packages on so its been fine so far. Next semester i will have a mentor aswell so that should be good too.
My support worker has been great to as i haven't been very well she has been fab as self propelling my wheelchair up some of the hills here between campus lectures would have been incredibly difficult without her assistance.
So thats whats been happening here really. Loving my course though i am a little snowed under at the minute. Exam is monday morning bright and early, i have rest breaks extra time and a scribe for that and will be in a room of my own so thats quite a lot less stressful for me. :-)

Once the exam is done i have two pieces of coursework to complete- one for the module i have the exam for and the other for the mini module-which is a rather difficult statistical analysis problem.

Will update again once this exam and coursework is out of the way and will try harder to keep my blog up to date. Im really sorry its been so long it has just been a little crazy here and time has literally flown by at incredibly fast pace!

Hope your all ok. Take care, chat soon
Lv rattles Xx