hospital dramas :(

hi all,

Again i must apologise for my recent lack of blogging however, as always i have excuses! So firstly im sorry i've been rubbish at this blogging malarkey lately and secondly i will explain....

So - since april i have had an infected venous leg ulcer among other bits of stuff too. But mostly the leg ulcer has been a pain. I tried to carry on regardless for a while and had two lovely days out with a couple of good friends. One trip to the big shopping centre near where i live and the other to the steel museum which was split into different zones and had everything from a fire tornado through to indoor rain which was cool! Spending time with my friends was fab and we all had a real giggle which is always great. I was however not very well really and had been on antibiotics from april with only about a week off them from then to now! Various different antibiotics were tried to get on top of the infection but being on antibiotics for such a sustained period of time was playing havoc with my adrenal insufficiency making me drowsy and weak and leaving my blood pressure really very low. I ended up getting admitted to my local hospital as i had a fever and was right at the start of an adrenal crisis. The drama began as soon as the doctors tried to take bloods and put a canula into one of my veins. This proved rather tricky and after the first doctor had had 6 attempts he got his registrar to try she tried a further 8 times before finally managing to get a very small paediatric canula into a small vein in my foot right on my ankle! Was very painful and didn't last very long.... Due to the infection i had i was unable to keep much down without throwing up even with my syringe driver of cyclizine (my antiemetic). Due mostly to vomiting so much i had not managed to keep my theophyline down for almost 5 days so my asthma started to kick off too, i ended up having magnesium and hydrocortisone through this canula and was put on more nebs and 15 litres a minute of oxygen! ICU were called down to see me but i was getting there once they then started a theophyline infusion to get my levels back to theraputic range! At the same time the canula was starting to get very sore and after a day and a half the nurse decided to remove it and recanulate me. This didn't work. After 5 people tried several times each they decided to give up and hope that i would be able to keep my meds down on stronger antibiotics! After another 3 days the infection got so bad i ended up in a full blown adrenal crisis so and they moved me to my usual ward from the surgical admissions unit. On this ward they instantly gave me an injection of steroids and continued to do so every 6 hours as per the adrenal suppression protocol which unfortunately had not been followed on the first ward which probably contributed to me getting so poorly so quickly! Anyway thats a different gripe which is going to be dealt with by my care coordinator who is rather cross with the surgical ward for how they dealt with me as when she came to visit me i could hardly stay awake and was quite fevery and had dangerously low blood pressure apparently. :(

So - on my usual ward where the staff all know me well they tend to know when im really poorly as i sleep the clock round till i feel better they just wake me for meds and i go back to sleep. The oncall consultant came to see me and wanted to start two lots of IV antibiotics again i had several doctors try several times to get a canula into me but they couldn't get a vein as all my veins were either too badly scared from previous admissions or collapsed because i was so poorly. In the end they decided that as it was only really for antibiotics if i tried to drink plenty of fluids then i could have the antibiotics intramuscularly... This didn't quite register with me at first but i soon tired of it. Two days and 8 injections after starting the antibiotics and sleeping around 20 hours each day as opposed to all day i refused to let them do the IM jabs i know it was stupid looking back at it but it was really painful and i had had enough of it all, i thought if i refused the jabs then they'd have to try and find a vein again for IV's which once the canula is in is a whole heap less painful!

They didn't. I was prescribed the kiddies syrup medicine to try but they left the IM injections written up for if i couldn't keep the syrup down. I couldn't even take the syrup. I tried. It was strawberry flavoured but very mild strawberry, the main flavour that came through was more of a rotten egg kinda taste which did actually make me sick. I ended up having to put up with the IM injections as just missing two doses had made the infection spread further up my leg and made my adrenal issues play up more! The nurses were good though as they knew it was painful as i was so bruised after just 3 days and 12 injections that they started giving me a good dose of oramorph before each injection and they also (most of them) injected the fluid very very slowly as the faster it was injected the more painful it was for longer and it bruised more too. Anyways, i was in for two weeks and had about 11 days of IM injections then i was put on oral meds and made to stay an extra day to make sure my adrenal issues were stable still and that the infection didn't seem to get worse again off the stronger dose of antibiotics! During the admission i saw the tissue viability nurse who decided i needed to have my leg all strapped up to my knee with special bandages to help improve blood flow and the healing of the ulcer, though towards the end of my admission i developed another ulcer on the same foot so i now have two nasty unhealing ulcers on the same leg. They are getting a bit better but they are also still quite infected. I finished my last dose of my discharge med antibiotics yesterday but the district nurses reckon i will need some more but are waiting till i see dermatology tomorrow about them. Its been a little mad to say the least!!

Hopefully things will heal a little quicker with these new dressings and bandages etc but i kind of have to just see how it all goes really. So, thats whats been happening healthwise bit of a rollercoaster ride.

I have some fab news though to end this post with! :-) i applied to go back to uni in september to do a part time masters degree as i wanted to do something productive with the time i cant work so that it'll look a bit better when i do try and get a job as i can say yes i have been unable to work due to ill health but i have done this masters degree whilst i have been trying to stabilise my health conditions! Thought it may just help me get a job once things are back on track. I applied to return to the uni i did my biomedical sciences degree at and whilst i was in hospital i was on the net on my laptop and recieved an email from the uni confirming that i have an unconditional offer to start in september. :-) i am thoroughly chuffed to pieces about it! Cant wait. I had to go down to uni today to have an assessment of need interview so that they can sort out my care and support needs for september as my disabled students allowance will not be sorted in time for my course starting so they need to try and get a temporary package in place prior to me getting the DSA funding and stuff. It was good really they have been incredibly helpful and very accomodating which is great as i was worried about a few things like how id manage getting between lectures etc, they have been good though and are sorting it out for me to be able to use my chair etc whilst im there and i will have a space to park the car outside the university (if im allowed to drive again by then)!

So that is where i am at at the moment. Things still grumbling along no better no worse but i did have some good news so it wasn't too much doom and gloom. I have a few exciting things coming up too. I have a good male friend staying over this weekend and in a couple of weeks a good mate is staying for the week so it'll be nice to have a bit of a social life again for a little while!! I also just had a birthday. Yesterday. I am feeling rather old though lol i cant kid myself im in my mid twenties anymore-i am definatly unquestionably in my late twenties which is disturbing but thats life, just another year closer to that dreaded 3-0! :( i spent this birthday with my family which was lovely i was spoiled rotten which was nice and i did feel very blessed my family are my rock at times and after having such a rubbish few months they made such an effort for everything to be perfect which was just lovely.

Anyways i am gonna leave it at that and try again to get some sleep been struggling a bit to sleep as its very very painful so thought id bring my blog up to speed with things. I hope that everyone is ok and staying well and enjoying the lovely weather! :-)

Take care and i promise to try harder to keep this blog up to date! (and sorry this post has become a bit long! Guess i had a lot to catch up with! Lol)

Loadsa lv Rattles Xxxx

Loooooong overdue update.....

Hi Everyone,

I apologise for the lack of communication recently. I have had a mixture of things going on here and have therefore been rubbish at keeping up with updating you all. (Sorry!)

I have decorated my nephews room finally (with a little help from the family) we have painted farm yard animals over all the walls in his playroom. I drew them all and spent each day sat on a chair brush on hand satisfying my artistic liscence lol!!! I enjoyed it loads though i was totally shattered afterwards. I have had a couple of weeks chillout time since resting and getting things back on a level again.

Healthwise i have been okish, things chestwise have been stable and reletavely uneventful. I have however had a few issues with some unresolving infections. I am now on more antibiotics with the prospect of requiring intravenous antibiotics if the infections dont resolve this time. The abcesses have required packing and several appointments with dermatologists at the local hospital which has been frustrating - we are still unsure as to what is causing them all but i am still plodding onwards with it all although my Addison's disease is not liking the antibiotics or the infections and has been a little problematic recently.

soooooo not really much to report except that things are plodding along - i am hoping to return to university in september. I want to start my masters course and have spoken to the disabled students services and the course tutor who all think that i should be ok given some support. I am really looking forwards to getting my teeth stuck into something!!! :)

I hope everyone is ok and i promise promise i will be a better blogger and update more often. Speak soon peeps,

Lotsa lv Rattles Xxxxx

well its just been chaotic here...

Hi everyone,

Firstly i hope that you are all well! It has been a bit of a saga here but such as life really hey?

I have had another chest admission it was grumbling on for ages prior to giving in and going in. I went in thinking i was relatively ok and was taken straight through to resus so ok maybe i wasn't so ok-thankfully it settled relatively quickly and i got home on wednesday. Thus beginning another drama.

Today i have been admitted to hospital seen the surgeons and discharged with two sets of hefty antibiotics and a cream antibiotic and have to see my practice nurse everyday for the next fortnight till i see the surgeons again in clinic! I am hoping that i wont need them to put me under the knife but it may be necessary depending on what happens in the next two weeks. Grr. I have a ridiculously poor family history with this issue and it did kinda frighten me. It took me from wednesday through to today to get this seen to as i was duely freaked out by it but the doctor when he saw me instantly had me admitted to see the surgeons. After going back to the local admissions ward and seeing some old nurses i know and recognise they managed to get some stuff sorted so that i could get home again this evening. They are ever so good on that ward and knew that me being in hospital whilst i felt well was not a good thing for me mentally it drives me round the bend!!

I now have a doctors appointment tomorrow morning to show my gp what has been happening and try and get the nurse to change my dressings each day! Either that or get the local district nurses involved though i feel i have more luck getting moon cheese than that lol. The district nurses round here cant be arsed they were supposed to change my subcut site for me each time and give me supplies but nope its like getting blood from a stone at times!! Will see how i get on tomorrow anyway!!

Im going to try and sleep again now- its difficult though as i am really sore and cannot get comfortable at all! :(

Ah well. Will update soon i promise. Take care everyone. Loadsa lv Rattles Xxxx

Rest, Relaxation and Recovery interrupted!

Hiya Everyone,

I promised i would try and keep up to date so i stuck by my word! I have not got much to report with regards to the health side of things - they are pretty much the same had oncall doctor out yesterday as still no better but apart from that its all the same and i dont want to repeat what was said the other day as that would be rather boring!

My evening after my last post was a long one not much sleep was had by myself due to being unwell and i had planned to have a restful relaxing day yesterday and to try and recover some energy and recharge a little bit after feeling so grotty. It did not turn out to be as restful as i had hoped however....

Whilst i had not been updating my blog most of you were sending me messages of encouragement and wondering if i was ok etc as i just stopped writing. I went someway into explaining a little of what had been happening in my post the other day, someone reading is not as nice as the majority of my readers. Leaving hurtful comments and just attempting to get me to stop writing my blog. I am getting rather weary with it all to be honest and am fed up with the stress its just not worth it. I hate waiting anxiously to see if this person is going to send another message or leave me alone its just unkind. I hate feeling like i have to prove myself to people. I am fed up with it.

I started blogging as a way to vent initially and then in order to help others in similar situations know there was someone else going through a similar thing. I have grown weary of the constant abuse now though. It is uncalled for and is totally unprovoked. :(

I did get chance to relax a little bit today with my dragon. We had a bit of R + R this evening whilst watching the Harry Potter film on the telly. He ate many rather huge crickets and fell asleep lying on my chest half under my duvet! Bless him! :-)

I am not sleeping too well at the moment so now my dragon is sleeping peacefully in his vivarium i am wide awake wondering who is sending these messages and feel i am probably never going to find out who they are. Why are they doing this too me? I dont know but i do know that all of it is making things so much worse from worrying.

Anyways i apologise for the moany ramble (again peeps) hopefully this idiot will leave me alone! I am going to try not to think of whoever this idiot is now and get some sleep.

Will scribble again when i can lotsa lv Rattles Xxxx

Long overdue update.

Hi everyone,

Firstly i apologise i haven't been a good blogger lately. Its been a rough few months both physically healthwise and emotionally with a few ill informed individuals who were trying to make my life difficult and upsetting. Hopefully this has now passed but after a lovely conversation with my good net buddy odette over the internet (thanks hon) i realised that it doesnt matter what these people think really. At the end of the day i started this blog not really bothered if anyone read it or not as it was more for me to have a place to air my frustrations and write about my experiences - both good and bad. I have been blessed with readers who check regularly to see if i have updated and i am very sorry that recently i have been bad at this. I guess i just needed a bit of time out away from hurtful comments. Im back and shall return normal service :-)

So. Whats new? Well, where do i start? I have been unable to drive again as i had another seizure. I have not had one in well over two years till this recent one and i have never had one whilst i have been well ever before they have always been whilst i have been poorly in hospital prior to this one. I was stopping at a good buddies house when it happened totally out of the blue whilst i was eating dinner and mid sentence talking to her. It has left me feeling rather frightened and confused. I dont know what has caused it dont know if it has something to do with whats been happening with my wierd pupils (been suffering with intermittent anisocoria for 12 months) or my brain cyst or both or neither and related to some of the medications i was taking. I am terrified of it happening whilst i am alone at home and just want some answers. Its taking a very very long time to get an appointment with neurology consultant tho!

More recently i have completed pulmonary rehab sessions and passed with flying colours :-) i was very very pleased with my post rehab walking test results which showed much much improvement on my pre rehab walking test. My physio will continue thro the active program offered by city councils in most citys and areas around the uk. Im looking forwards to the change but also slightly apprehensive as to the change.

In other news i had been relatively stable chest wise partly i think due to the physio. They've also been doing talks and things after each session on anything from managing medications to sputum production and chest clearance to pacing and relaxation. Its been fab.

Recently tho as in the last fortnight really i have been feeling rather run down. Sleeping loads and i mean loads. I have been struggling to stay awake longer than an hour a day some days. :( I started on an increased dose of pred again around 14 days ago in the hope it would make things better and initially it worked really really well and i did pick up, then recent stresses have made me even more run down and i also had a couple of tummy bugs which further knocked my system! The hypoadrenalism has not been too great through the bugs so i've been using a lot of I.M hydrocortisone injections most days requiring one or on the days i couldn't face an injection trying to keep 100mg of oral hydrocortisone down me! It has helped keep me away from adrenal crisis though which is always good! :-)

Last wednesday however, i started with a chesty cough and way more productive than i am normally (i dont usually have much sputum-sorry gross i know) i called the doctor and they gave me more pred and a pot for a sample to send one off-im still awaiting these results to see what bug it actually is growing in there so they can give me appropriate antibiotics! I was started on augmentin on wednesday this week as my temp has been really high and i have been feeling really unwell for over a week with progressively lower peak flow recordings the gp called yesterday to see how i was getting on and still wasn't overly pleased with things so i had an appointment with her today. She listened to my chest and the wheezing is very localised to an area on one side of my chest she said which figures it has been quite tender there when i have taken a full breath etc. I have had to increase my nebulisers to every 2 hours during the day/evening as required up'd the pred further and been instructed to take regular paracetamol as even with this my temp has still been slightly raised. Im really frustrated. I am fed up of feeling poorly and just wanna have a few well days again. I know i will be fine again soon im just feeling sorry for myself i guess! :( i miss my family too and i cant visit at the moment as i have no transport and stuff - im feeling really lost without my car :( anyways i have developed a rash in the last 24 hours which may or may not be a reaction to the antibiotics or it could just be due to the chest infection itself according to the doc and the pharmacist!

I have my orders for the weekend. I am not to let my peak flow drop as low as i have been letting it. Its not to go lower than 200 at all! I am to monitor the rash which i have and was told not to take the antibiotics anymore if it got worse which it has during the day today so i have missed this evenings dose and now will have to call the oncall doc tomorrow. I was told not to let my temp get higher than 38 with paracetamol and stuff. . . .

I am not sure what the oncall doc at my practice can do but may need to change antibiotics if it is a reaction to them i really dont know what it is tho its wierd its not itchy doesnt hurt and isn't raised but its almost got an eczema kind of appearance but it isn't eczema! Ah well.

Anyways i have bored you all enough with all of that rubbish. That is whats been happening physically anyways so its been fairly busy on that front.

On a social front i have not done much. I haven't been too mobile recently since my physio and bone doctors decided i needed to use crutches for now- i have no idea how long this will be for. I was told to use a stick 2 years or so ago and that went on longer than i wanted it to so i just hope this isn't a further progression as i really dont want to have to use crutches on a semi permenant basis!! But such as life i suppose. Sooooo due to not been able to physically walk too far and being unable to drive i have not been out much most of my socialising has been seeing my neighbour for a coffee when i have been up to it. I have had a few friends stay over tho which is always nice. Joey a friend from the blogging community came for the weekend whilst i was unwell to look after me bless her, and a couple of mates came to visit yesterday one staying over night which was lovely. I have been missing not going back to see my family as much as i did when i could drive! I am currently just waiting for my little brother to be ready for me to do my artistic stuff with my nephews bedroom and playroom which his mum has been giving me ideas of how she wants it to look etc. I have been drawing pictures and painting etc then picture messaging her to show her my progress :-) she so far has loved all my designs and i am looking forwards to getting down there when they're ready for me to start painting the walls and complete it. I cant wait to see it all finished! :-)

So i have loads of stuff coming up to look forwards to i just need to kick my stroppy lungs into touch again! Hopefully it wont take too long for that to happen and hopefully my brother and sister in law will have got the little ones room into a state ready for me to start my drawings soon!

Sorry for the rather long post but at least i have now brought things up to date again and you all kind of know where i am at. Oh also before i go thank you louise, joey and odette (and a couple of folks who will know who they are) for your support recently it would have been difficult to get back to it without you guys!

Hope everyone of you is well and enjoying the beautiful sunshine we are having at the moment. :-)

I will scribble again soon.
Lotsa lv rattles Xxxx

My little task.

Hi everyone

I hope that you are all well! I am doing ok at the moment the pulmonary rehab is going well when it isn't cancelled due to the snow (which has been happening rather a lot since Christmas!) I think that maybe this mornings session will again be cancelled as I just looked out to see a lot more snow than was there on Monday and they cancelled it on Monday!

I have other things which i can entertain myself with however. I have been going back to my folks almost every weekend since my dad's dad died a few weeks ago-it was around the same time that my mum's mum died two years ago. My grandma died on my mum and dad's wedding anniversary two years ago it was a really tough few weeks lately for all of us and was made even more difficult when my only remaining grandparent my mum's father was very unwell whilst my father, brother uncle, aunt and cousin were all in wales for my other grandads funeral. My brother and his wife are my grandads live in carers and so it was left to my sister in law and my mum and aunt there to look after him whilst my brother was away as my sister in law was working shifts and also caring for my little nephew aswell as my grandad. My grandad was gradually getting more poorly from christmas. He has not fully got over a really bad chest infection which has been affecting his bronchitis and also had a general further deterioration from his parkinson's disease and alzhiemers he is becoming much more forgetful and has suffered a further deterioration in his mobility-which whilst i was away in wales resulted in him having almost a dozen falls in just a few days. He ended up at the end of the weekend not being able to stand without two people as he wasn't weight bearing at all. This was not the worst of it though as my poor sister in law ended up having to help him with his toiletting too. The result of all of this was that at the falls appointment and assessment which was held on the monday of my other grandads funeral was that he would be admitted to an assessment and rehabilitation hospital at the other side of my hometown. A place called the Arc. It has a very good reputation and in comparison to the other two places available i feel he was lucky to get in there. He does however feel like he has been put in a home i think. The minimum term is two weeks up to a maximum of six weeks. I think he will be there the full six weeks if i am perfectly honest as he hasn't made as much progress as i thought he would at this stage unfortunatly. I told my mum i would be home every weekend till i knew my grandad was okish again. I dred anything happening to him with me here so far away. I will never forgive myself for not being there when my grandma died as i was working i will not do the same thing if anything happens to my grandad after all with no work commitments at the moment i have no excuse not to be there which is a very positive thing indeed. All i need to do is inform my carers that i am going away and give them the day i need them to recommence my care again although the pets still need looking in on if im away more than one night at a time so i have been going early on a saturday and coming back late on a sunday that way i can ensure that my pets are ok for that time on their own.

The first time i went to see my grandad he seemed very confused and a bit agitated and really wasn't at all good on his feet standing was difficult for him. Its important for him to gain some mobility and for a care package of sorts to be put in place whilst he is in the arc as my brother and his little family are moving into their new home whilst he is in there-it has been planned for a while for them to move out but my grandad i think has been in total denial that this move was really happening-however it is official now. They got the keys last monday and have already started the work on their new home which we are hoping will be completed in the next few weeks.

This weekend just gone i went back to my folks again although i stopped with my aunt again as my mum and dad are decorating their bedroom which has meant they were sleeping in the room i usually sleep in and all their stuff was in the other spare rooms! Its been chaos seriously! I had a lovely time the last fortnight at my aunts though. I dont really see her and my uncle much if i am only back overnight so it was good to get the chance to have a natter and stuff with them!

I went straight to my brother and sister in laws new home this weekend and helped them to strip wallpaper off the walls in my nephews bedroom and playroom. (their house is absolutly massive! It has five downstairs rooms 7 if you include the little toilet and utility room with the outhouses aswell there are 9 as they are all linked to the house. They also have 5 bedrooms!) it is a beautiful house though the decor is not so great lol! An elderly couple lived there for a very long time before selling it to my brother and family so it has got a lot of very elderly person looking decor including a shower in the back room downstairs-a rather odd feature which is not staying lol! Anyways i digress! I spent most of the day there helping out with one thing and another before we went to see a fire festival in the town centre which was fab. We saw all of it two years ago and it was amazing then so we were desperate to see it again all of us! We took my nephew along too and i think he enjoyed it too! :-) We all then had tea at my mums house before i had to go to my aunts as i hadn't actually seen her by that time. I had an early night knowing it was going to be an early start the following day! My god daughter jumped on me bright an early to wake me up and proceeded to drag the quilt off me to prevent me going back to sleep mmm she knows me soooo well lol. She then put the lights on so that i had to get up and danced around the room till i finally said 'ok i am up now!' i briefly saw her and her brother before my cousin took my aunt and co to a car boot which left me to quickly pack my stuff up load my car and get to my brothers house. I got there at about 10am which was rather early for me lol! I was rather cuffed with myself! I helped by babysitting for my nephew we watched his waybuloo dvd a lot of times and i think on the third play through of it even i was nodding off! I glanced down to see that the little mite was indeed asleep but he promptly woke up again just as i went to put him down in his cot! So it was back to entertaining him again though he is fairly easily amused! He is a very good baby! :-) My cousin came around to take my nephew out for a while so i went back to helping my sister in law with the decorating whilst my brother went to buy doors for the upstairs of their home-seriously busy weekend lol! We managed to strip the wall paper in three rooms and clear out all the timber that needed clearing from all the rooms-my brother demolished the bathroom knocked down the wall separating the bathroom and toilet so it was one big room and smashed all the tiles! A job well done i think! :-) i left their's earlier than i would have liked to as my friend informed me it was snowing really heavily back home-i went to see my grandad who seemed tired and again rather confused but on the whole seemed a little happier.. My aunt was there too so i said goodbye to them both at the same time before going to my mum's to have a cuppa with my mum and dad before i set off home again. Mum gave me a bag of goodies as she always does she is great like that :-) and then i came back home. My mission before i go back next weekend is to come up with two or three different farmyard themes for my nephews playroom. It is to have cows sheep ducks and chickens and pigs in it and they all have to be cartoony for my nephew. Im going to do a timmy time sheep thing i think on one of the walls but i still dont really know on the others yet. Have some ideas though. I have downloaded some pictures from on line search engines etc and i am going to get the sketch pad out later today and scribble some ideas down for my brother and sister in law to pick which one they want! I will then be drawing the designs on to the walls and helping them to paint them. We hope to have the playroom and his bedroom sorted in the next couple of weeks-plasterer permitting of course!

So i have myself a little project to do! I am really excited. If there is ever anything arty to do i am the one who gets asked i love it! I have done painting for my aunty in the past for her bath board with an underwater theme and her out house with a sunny theme and trees and i also painted my god daughters headboard for her bed with all her favorite disney characters when she was younger! I like that they all think i am good enough to do these things and feel that i can do it-it makes me more determined to do a really great job of it- and hopefully it will be a playroom/bedroom that his friends will be envious of once it is all completed! I cant wait!

Anyways it is almost time for my carer to be here now and i cant believe i still haven't slept! My arm is very sore after my second swine flu jab i dont feel as unwell as i did with the first one but my arm is really very very sore touching it or moving it even slightly is really rather painful! I am hoping that it doesnt hurt for too long this time as i really need some sleep lol! I am also hoping to get a couple of sketches done today and a few errands that i have been putting off for almost a year! Here goes.....

Hope you all have a fab day whatever you are doing! Take care and speak soon.

Will scribble again soon.
Lotsa lv rattles Xxxx

A rather busy week!

Hi Everyone,

This week has been tiring and stressful. I went to Wales very early on sunday morning - I was up at 5.30am and on the road by 6am. I finally arrived in bridgend at about 10.30am having stopped at birmingham for a bit of a break as I was getting tired! I had breakfast with my brother and my dad and we had a drive to porthcawl and aa walk around tonapandy where my dad spent his early years!! It was strange hearing my dad's tales of his youth and seeing the house that he spent the early years of his life in. We then went to visit my great aunt and uncle (my grandads brother and sister in law). We stayed there for just over an hour before getting some dinner at the pub near our hotel 30 mins away. It was a late night as we met up with my uncle and aunt and cousin at the pub before settling in the hotel for the night. I finally got into bed at almost midnight after such an early start I was shattered!!

I was woken up by my brother calling my mobile and knocking on my hotel bedroom door at 8.30am and told I had 30 mins to get ready before we were meeting the rest of the family at sainsbury's for breakfast!!! My cousin and I followed all the others about 15mins late as we take a little longer to get ready lol!!!! We had breakfast and discussed what each of us had to do that day! My aunt and uncle were picking up my grandfathers partner from cardiff and my dad and brother were picking my great uncle and aunt up from the rhondda valley, my cousin and I had a couple of hours to hang around before we were to meet everyone at the RAFA club in porthcawl. We went to have a wander around the shopping village and had a costa coffee before setting the sat nav to find the RAFA club. We arrived and clled my brother to tell him that it was fairly easy to find - they were only a few mins behind us so we waited then went in together. The cars picked us up from the club and drove to pick up the hurst carrying my grandad and then followed it to the crmatorium 30 mins drive away.

It was difficult at the crematorium, my grandad's partner was very upset and the whole thing just reminded me so much of my grandma's funeral a couple of years ago. She died 2 years ago today. One of my grandad's shipmates from the war was there - the only surviving crew man of my grandfathers ship. His son gave a speach which brought a tear to my eye! Afterwards we shook peoples hands and thanked them for coming inviting them to come and celebrate my grandad's life at the RAFA club in porthcawl. A lot of people turned up which was lovely. I also met a distant reletive who was talking about our family tree and told us he had traced it back to the 1800's my brother cousin and I were very interested as we always have been interested in family tree etc but never got the chance to discuss it with our grandfather. We swopped e-mail addresses with our long lost reletive (my grandfathers cousin!!!) and I received an e-mail earlier this week with pictures of my great great grandfather and his brothers it was weird but very cool!

I drove back from wales after the wake and set off at around 6.30pm getting into sheffield at almost 10pm (I was shattered!!) Thankfully I didnt have to get up too eary on tuesday. I had pulmonary rehab on wednesday early in the morning followed by a check up with my GP in the afternoon. Then yesterday and today I was able to have a little rest which was well needed!!

I am getting on OK. I am still a little shell-shocked and it being the anniversary of my grandma's passing today i am a little sad! I miss her so much!!! Its is also my mum and dad's wedding anniversary today! Tried calling them earlier but there was no answer so maybe they have gone out for dinner or something!!! I am gonna try calling them again in a little while! I am going back to my folks tomorrow just overnight as my mum's dad is very poorly at the moment and has had to take a place for a residential rehabilitation program in the hope that this will increase his strength etc otherwise he is not going to be safe on his own at home and may need a nursing home which none of us want to do to him - he would hate it!!!!

Anyways - I will post again soon as I am back from my trip away at my folks.

Hope you are all well, take care.
lotsa lv Rattles Xxxxx

Beginnings and endings.

Hi Everyone,

This weekend was a difficult weekend for me its a month of anniversaries in february and all of them are hard, the only real blessing was my beautiful nephew's first birthday yesterday, however after a lovely day with my family I started to travel back to my house when my mum called me to tell me that my grandad had died.

This week is gonna be a tough week as I still dont really know how i feel. Im sad and upset but finding it really hard to deal with my feelings about it all. It has come really close to the 2 year anniversay of my grandma's death and when my grandma died I was devestated.

I am off to wales for the funeral at the weekend and will see my reletives and my grandad's dear friend who I am sure is finding everything very difficult. At the moment I am trying to process everything as I feel so bad for having not seen my grandad for a while as I have not been well and neither has he - the times I have been ok he has had bugs which could have made me very ill and vice versa so it has been a while since I last saw him and for this I feel very guilty and ashamed.

I will scribble again after the funeral and stuff.

Take care everyone and speak soon

lotsa lv Rattles Xxxx

Randomness!

Hi Everyone,

I hope that you are all well. I just swapped my blog over from open to all comments to comment moderation. I did this mainly as a good friend of mine had been receiving some abusive comments on her blog. Although this happened a while ago now i still wanted to be able to protect myself from any similar abuse. For the most part this will not affect most of you and your comments will be published as they would have done before.

I did however receive a comment from someone this morning who had apparently stumbled upon my blog. This person had stated several questions which they wanted clarification on. So in the interests of those people who do not understand my illnesses I will attempt to explain (as briefly as I can) each of them.

I have a severe form of asthma called brittle asthma, I take a lot of medications in order to control this including oral theophyline, steroids and a drug called montelukast which I take as tablets and then a steroid inhaler, long-acting reliever inhaler and two different short acting nebulisers. My nebulisers I take every 3-4 hours through out the day and the night. Due to the amount chest infections and pneumonia's I have had over the years I now get severe pain in my chest when I try and take a deep breath.

I also have Hypoadrenalism - which means that my adrenal glands don't produce the chemical cortisol. Without cortisol your body cannot survive, you need it to regulate your metabolism, blood pressure and many other vital functions. For this I have to take regular steroid replacement therapy three times every day morning, lunchtime and evening. The hypoadrenalism tends to mean that I suffer from quite intense nausea and often this leads to vomiting also. I also have a problem with my hip, in that I get severe pain in my hip and at the end of last year my community physiotherapist and occupational therapist have insisted that I walk more regularly with a stick.

Due to both of these conditions I have to take several other medications to stop or treat side effects. These other medications include PPI's to stop my stomach producing too much acid and giving me stomach ulcers and calcium supplements to stop my bones from getting too damaged from all the steroids I take for my asthma and anti-sickness medication to stop me from being sick as this adversely affects my hypoadrenalism and can lead to an adrenal crisis if it goes untreated and finally I take a combination of pain medications for the severe pain that I have if I don't take them.

SO - That is an overview of my conditions and the treatments I take and why I take them etc. The pain medications were all started only after a thorough evaluation from the pain clinic at my local hospital and a thorough assessment whilst I was an in-patient at that same hospital to assess how often I needed them and what dosage etc etc. The same is also said for the anti-sickness medications, I have tried a range of anti-sickness medications but the hospital and I were still struggling to control my nausea and vomiting. An assessment was made of the situation and it was decided that I would start to use sub-cutaneous cyclizine. I am currently trying to stop using this as the side effects include chronic abscesses from the injection sites and a lumpy feeling under the skin where the injections have been. In the meantime I continue to use the cyclizine and trial other anti-sickness medications orally in the hope that we can switch to an oral preparation soon.

The final point Yes I do get care and it is provided by the social services. I also get DLA at the high rate for both the care and mobility component. I underwent a full assessment of need was allocated a social worker and whilst I was in hospital for a few months last year my care was organised. I may go out and about but without the care I do get I wouldn't be able to do that. My days vary, some days are worse than others, as both my main conditions are so variable. The days where I am not feeling very well I am housebound and unable to do stuff because I am either too short of breath and wheezy or having problems keeping my meds down so feeling particularly groggy.

I hope that this has given a brief overview of why at times it may seem that I am taking something that may not be prescribable to most people. Some of the medications I do take can be highly addictive and are not routinely prescribed. I do not take them for any other reason than if i didn't take my pain meds I would be in severe pain and if i didn't take the anti nausea meds I would be vomiting.

Anyways, I didn't sleep very well yesterday as i was really wheezy most of the night - i actually only managed to get it sorted at 8am this morning so I cancelled my morning call from the care peeps and then went to sleep. I have just been up a couple of hours now to get some food and check my messages when I saw a comment on my last blog entry for moderation which prompted me to write this entry. I'm gonna head to bed now as its a week full of appointments this week with at least one appointment everyday. Starting with respiratory clinic and pulmonary rehab tomorrow!!! Off to bed now as still a bit tired from yesterday!!

Will scribble again soon

Lotsa lv Rattles Xxxx

Hi Everyone,

This last week has been rather full of appointments and such like. Most of which have been rather unspectacular. I had my Neuro - ophthalmology appointment and we are still at a loss as to what is causing my intermittent anisocoria. There have been several speculations but nothing has been confirmed as yet all I know is that it happens a few times a week for the majority of the day when it does happen and it causes rather blurry vision and I have trouble focusing on things near to me such as print in a magazine or book - so that reading is very difficult and causes quite severe headaches after only a few minutes reading.

I also had my first of my two swine flu vaccinations this week. I have to have two injections as the steroids i take for my asthma and hypoadrenalism suppress my immune system. The first injection went in and my arm was rather sore (and to be honest still is!!) overnight my temperature was up and down like a yo-yo!! I felt rather sickly the morning after the injection and had a bit of a lazy day resting on the sofa.

I haven't felt at all well today, been sick most of the day and also had a lot of pain in my hip. Eddie - my bearded dragon has been keeping me thoroughly entertained though with his daft antics lol!!! :)

I hope that everyone is doing ok, I promise I will update properly soon.
Take care, lotsa lv Rattles Xxxx

People waiting too long...

Hi Everyone,

This world is so full of technology these days that you dont necessarily have to have met someone in person to have a friendship/aquaintance with someone. With the Facebooks, my spaces and twitter pages I have met a lot of different people some are Brittle asthmatics like myself others have other respiratory diseases some very rare and others more common. I had been following the story of a 20 year old girl Jess who was in desparate need for a lung transplant to give her the chance at life that her CF had robbed her of over the years. She had been declining for several years and had been waiting for the transplant for four whole years. She was told near the beginning of her wait that she would probably only have 2 years of life left with her very diseased lungs, however Jess had such a strength and determination about her that she refused to give up fighting. She fought on against the CF and against the doctors predictions. Just before christmas she was very poorly and was taken into hospital she had had several calls from the transplant people but each one to this point had been a false alarm - which must have been totally devestating for her and her whole family - to be so near - but yet so far at the same time and to then know that someone else was getting the second chance that moments before you thought you were going to have. I cannot imagine what she went through each time she had a call and then found out the lungs were for someone else. Just before christmas it looked as though Jess was loosing her fight and everyone who knew her either through friends of friends or actually knew her in person was following her progress on a facebook page set up for her so that any news could be passed on quickly to her friends etc. We all waited and prayed that Jess would get better so that the next set of lungs would be hers. Finally on the 28th December she was still in hospital at the time rather poorly and she was told a new set of lungs were hers. She went through the transplant. It was always going to be a tough battle and it started off with a few ups and downs as expected, then things seemed to be improving and people still continued to pray but were starting to look to what this second chance would mean to such an inspirational young woman. Unfortunatly things then took a drastic turn and then out of the blue last week Jess died - i found out when one of my friends text me just after midnight on tuesday evening/wednesday morning. I was a little shell shocked - just couldnt believe that it was true. It was a really weird week last week as i thought about all Jess's close friends and family, those who she met and left a mark in their lives and those like myself who had never met her in person but had followed her story and prayed, laughed and cried with her over the last few years - she touched my life and gave me a totally different attitude towards life. Everyday should be appreciated every moment. Life is just so precious full of those little moments that may not seem like much at the time but could be so poignant later on. I firmly believe that people come into and out of your life for specific reasons. Some stay and some do not,whether it be that you both need each other or one has a specific lesson to learn from the other it doesnt really matter - but each person brings something unique to every friendship.

Jess was a real inspirational charecter she had such courage and dignity fighting each day with grit and determination. She just kept fighting and refused to give up, but ultimately the transplant came too late and she had waited too long. Four years of waiting is just too long. People shouldnt have to wait this long for transplants. So many people die whilst waiting on the transplant list - before they get their second chance. Are you on the organ donor register? If you needed a transplant would you want someone to give you a transplant? Most people would accept an organ if they needed one in order to stay alive but so many people either wont or never get round to signing the donor register or fail to discuss their wishes with their loved ones so that people dont want to let their mother/father/brother etc be a donor as they didnt know what he/she would have wanted.

These statistics need to change and they need to improve so that more people get their second chance and that more people sign the organ donor register. I would love to see an opt out system rather than an opt in system as its regularly used as an excuse that people just havent got round to signing the register etc etc. if you were really against donating you would then just have to opt out of the system - this would mean that there would be so many more organs to help people like Jess in the future. People also need to start discussing their wishes with their families so that those people who will get those decisions to make know what you want. Each person who donates organs can change up to 7 other lives through transplantation - how cool is that!!!

Please, please, please sign up on to the organ donor register today. If you have always been meaning to and just not got round to it before then now is your chance it will only take a few minutes. You could change someones life like Jess's.

Follow this link to sign the donor register today on this link: - https://www.organdonation.nhs.uk/ukt/RegistrationForm.do

Also dont forget to discuss your wishes with your friends and family as well so that they know your intentions and then hopefully people like Jess in the future wont have to wait so long for their second chance.

Rest in peace sweetheart - you have your wings now and can fly with all the other CF angels, Breathe easy now Jess. Xx

Lotsa lv Rattles Xxxx

Wow - where did the noughties go.....

Hey everyone,

I hope that everyone is doing OK despite the totally atrocious weather that we are having at the moment (those of you who live in England that is!!) We have had a hideous amount of snow - my street looked like a skating ring and my garden was lost in almost a foot of snow though it has been worse.... The other day i couldn't see my old car on my drive as it was totally covered in snow and there was snow all around it (how can a car become just a mountain of snow lol!!!)?

Anyways I have a lot to update you guys on and I am very sorry that I have been so rubbish at blogging lately. Just before Christmas I started something called pulmonary rehab. Its usually reserved for people with COPD (chronic obstructive pulmonary disease) however due to the fact that I have been rather poorly recently and my fitness is not that great etc the community physio wrote a letter to my respiratory consultant and asked if it would be safe for me to join the group etc, I had an assessment which showed i was just about OK to join the group and so I had my first session before Christmas. I did 30 seconds at each task (there are 10 in total) and i was totally shattered afterwards. They do a full warm up and cool down and they measure your observations prior to and on completion of the session and in between if you start to feel unwell or look unwell. It is a mix of weights and load bearing exercise as well as general aerobic fitness so its a great all round routine and it is twice a week!!! My first session went rather well except that i couldn't do the squats due to high levels of pain in my hip and even though i thought the bike would be easy i found that too aggravated my sore hip. My physio and i changed the squats to backwards lunges and have since tried a smaller bike though that too aggravated my hip so we are trying to work something else out at the moment..

Soooooo - I had my first session and was due to have my second later that week but when my carer arrived in the morning I really wasn't feeling too great. I eventually phoned and told them i was not going to be there as i had a tummy bug. The tummy bug rapidly developed into the evil norovirus and i was really poorly for two days not able to keep anything at all down - by the third day i was so dehydrated and couldn't move without feeling really dizzy so ended up in A and E. They started me on IV steroid replacement because of the hypoadrenalism and then gave me some pain relief and anti nausea medication and of course fluids and by day five of it starting (day 3 of my hospital stay) i was feeling a little better though still very nauseous. I was enjoying the company of the other ladies in my bay whilst on the medical admissions unit when i got very wheezy from laughing and my chest just got worse from there - i started a nebuliser and the nurse came over and asked if i was OK but heard me wheezing and got a doctor and an obs machine.... Needless to say my obs were rubbish they started me on high flow oxygen and tried to do a blood gas several times in the end getting the ICU doctor to do it and i was transferred to the HDU. I was there for several days and then transferred to a ward where i then had the drama of trying to get well enough for home before Christmas which was rapidly approaching!!!! During which time the weather outside was getting steadily worse and worse and the roads were all getting closed here and there.... Most of my routes home to my parents were closed with two days to go before Christmas eve and i was still on oxygen! I came off the oxygen on Christmas eve and was allowed home 4 hours later thankfully as it was Christmas :)Once I was at my house via the patient ambulance transport system i packed all my bits and bobs for Christmas presents i had into the car and loaded some spare clothes and stuff and then started on all the extra precautionary stuff i needed to take as a just in case! So in went some table salt in a big container, a spade in case i got stuck in the snow n needed to dig my way out of the situation, a flask of super strength coffee, plenty of spare blankets and a spare coat, plus spare shoes/boots with tread on them and then finally a torch.

The journey was rather tricky in places as it ended up being a motorway drive instead of the shorter more minor roads way but those roads were closed as the were treacherous!!! I started off driving through a rather bad blizzard on the M1 and then it turned into icy patches on the motorway which wasn't very good and then rapidly progressed to freezing fog which was a huge challenge. I got home to my parents after stopping twice at services for a stretch and a drink of coffee :)

Christmas day was quiet as my brother, sister in law and nephew were all in London seeing her relatives. It was weird for me to be opening presents without my little brother. We had planned to have a big goose dinner on the 28Th Dec to celebrate Christmas day a little later as we would have my brother and his little family over then :)

None of us had ever had goose before and so had no idea what it would look like or taste like - all we knew was that with the goose fat from our bird we would have incredibly tasty roast potatoes. I can say now that goose is rather tasty and the whole dinner was fab!! opened all my presents then with my brother and sister in law as we often get same or very similar Santa presents! :)

I had to find an on call doctors on 27Th and then again 28Th as i needed some more of my sub cut anti-nausea medication as the hospital only gave me a three day supply for a whole 13 days away - it was very frustrating!!!!

i got the script fine as I had a letter from the hospital asking them to write me a script etc, i then had a few issues finding a pharmacy that didn't need to order it in specially as that was going to take too long and as i need this drug in order to keep anything down me i needed to get it as soon as possible after i had got the script. After going to 7 different chemists and phoning 4 others i have in went back to my mum and dads and went to bed. First task of the day on the 28Th Dec was to go to the chemist in the village. I drove there on my way to my grandads house and thankfully they had three boxes which was just enough to see me to the Sunday that i was travelling back meaning that i would need to get another script on the Monday 4Th as soon as i got back to my own house!!

The snow was horrendous on the way back home and as i came into my city it was getting deeper and deeper the higher up I drove. When i got to my road i was very surprised to see almost 2 feet of snow in places where it had drifted but most places had around 5-6 inches. I went straight to bed when i got in as i was totally shattered and was up early to sort out my meds on Monday morning. I then had an endocrinology appointment and then went straight from there to my pulmonary rehab session. By the time I had done physio and listened to the relaxation talk and she put on some whale music and told us all to close our eyes - i was that chilled out i was nodding off and kept jolting awake as my head kept flopping forwards when i was just falling asleep lol!!!

I was supposed to have had a chest clinic appointment on the Tuesday however the weather overnight had been terrible and there really was almost 2 feet of snow on Tuesday morning. Had GP appointment on Wednesday so that she could see how i was going after Christmas and my admission before hand etc. All was OK there except i had a ear, throat and chest infection which my rather kind family gave me for Christmas - I have to say that was probably my least favorite present hahaha!! lol.

Had yet another appointment on Thursday which was my first one with this new doctor - she was pleasant enough and seemed OK and i am now going to have a proper care plan made to include all health problems rather than just a couple.i am to have an appointment with my social worker coming a week on Friday and i will finally be allocated a care coordinator which should be very helpful.

Pulmonary rehab has been cancelled on about 5 or 6 occasions now so that has hampered my progress on the fitness front however it couldn't be helped the snow has been really deep and the roads rather dangerous - in a way i was glad it had been cancelled as i really didn't fancy driving in sll the snow if i could at all avoid it. I have only left my house to do bits of essential shopping and to go to my doctors and hospital appointment.

So that brings me up to today which i have done nothing - i bought a web cam from amazon the other day and it arrived this morning. I have been playing with that today online :) it has been a rather exhausting day today. My chest has been quite grumpy for the last couple of weeks but possibly a little worse the last few days. I don't think i am at the point that i need to go into the hospital but i am at the stage where unless i an sat more-or-less bolt upright i get really wheezy and tight chested. I have not got to sleep before 4am any day this week. last night it was 6.30am i went to sleep and of course the amazon delivery arrived at about 8am and then my carer arrived at about 9am so it wasnt really a refreshing sleep. I have then spent all day attempting to sleep when i have felt really tired but i dont think i ave ever been as popular as i have today - isnt that always the case though - when you really need to be left alone with no phone calls or anything like that everyone and their dog wants to speak to you or pop round!!!!!?

So i gave up and decided to stay up till normal bedtime but now i am really tired - it is crazy though as i think i may have got overtired now as im struggling to sleep now even though i keep randomly dropping off for a few seconds when i switch everything off and settle down i end up wide awake and wheezy/tight again! grrrr.

Ah well i am going to try and sleep again now as if i go now i may still get around 6 hours sleep befor ei get woken up! ~:( So I promise i will try and keep you all updated a little more as i have been rather rubbish recently due to me not feeling too great. soooooooo till next time everyone do take care - the last batch of snow may have been mostly washed away by the rain today however we here are supposed to get more snow this wednesday- oh joy of joys hey?? Its very hard when your stuck inside looking at the same four walls day in day out due to the weather but i have been finding the cold air and stuff just really not good for me on a hip pain and asthma front so im getting it from all sides at the moment.

Hope you all managed to sleep well - fingers crossed that i will sleep too!!!!

Speak soon lotsa lv Rattles Xxxx