A New Year

Just came by to wish Friends and Readers a 'Happy New Year'

So glad to see the back of this one, and hope for a better one for everyone.This will go down as one of my worst ever, but know that I am not alone...... 'with problems'

I am going into Hospital again shortly,that will be 3 times in around 7 months,  but will write about that another time.

As 2010 ends, we can only hope for a better and brighter 2011..........

Aileen....X

Hello! to my Blog Friends...an update as promised. I've delayed writing.....and on a good day, try to forget what is happening 'healthwise'


Just to recap......


I have been going to the Oralmaxillofacial Clinic since September 2007, after problems with Ulcers in the Throat and Mouth since January 2006 and 12 nosebleeeds (one lasting 7hrs)also recurring Conjunctivitis. Finally diagnosed with Cicatricial Pemphigoid , basically a 'Compromised Immune System'......for which there isn't a cure. I'd got used to having a sore throat/mouth......but in April 2010, things were changing, and I also have an enlarged lymphnode at the side of my neck. I cannot see this, but they can 'feel' it. As some of you may remember, I went into Hospital in June for Biopsies, and the result of that was 'Cancer in Situ' (stage before Cancer). Arrangements made to be admitted for Laser treatment, first they cancelled, and then you may remember I had a fall in the Garden, so Hospital delayed, and arranged holiday cancelled. Did finally go in Hospital October 12th, and had the Cells Lasered.



Did go to back on 9th November to the Clinic that I attend on a regular basis, used to be every 4 months, but with the 'changes' now go every month. I thought I would receive the results from the Laser treatment, but didn't, and another appointment was made for January. It bothered me that I had to wait all that time, but then got a 'Phone call on the 23rd November, asking if I could attend the next Day? which I did, and saw the Surgeon who had done the Laser treatment.He was happy with the way things had gone. BUT, now was asked how long I'd had the 'problem' with my Voice.....I sound like I've got Laryngitis a lot of the time and have done all the time I've been attending, but sometimes it sounds just normal. I thought they were treating me for all the Mouth/Throat problems,they have just been concentrating on the Mouth/tongue... but I'm now being referred to Ear/Nose/Throat for investigations further down the throat, and I'm really 'worried' is an understatement, totally different Hospital, but they all come under the umbrella of Sheffield Teaching Hospitals, and it is just around the corner. the only (soonest)appointment they can offer me is December 24th, Christmas Eve is my favourite Day of the Holiday. I also have appointments for the main clinic, and another clinic on the 14th December (My Birthday) one in the morning and one in the afternoon.





Still having problems with the Hand/Arm that I fell on, and it appears to have 'upset' the Carpel Tunnel..which is quite common, BUT, very painful. After 3 months of pain my own Doctor has reluctantly given me a Cortisone injection in the wrist. It has improved, but Surgery is maybe on the cards for that. I can't cope with that just now. Some better news, I've just had an Eye test at the Opticians, and no change there, same Prescription for the last two years, but only need them for reading and close work.

Allan is still unemployed, after applying for various positions, as it happens he has been available for me, and a great help. We are both hoping for a better 2011. I wish I could just wake up in the morning, and it was not happening to me.



Today, the 10th December (1998)was the date my Son was killed in a Traffic accident, somone crossed the solid white line coming in the opposite direction. and he was killed outright.
His ashes are buried in Penistone churchyard, which is quite a journey from here, but I always go the nearest Weekend to the Anniversary and lay a holly Wreath. The weather has prevented that, which has upset me, but we will go as soon as we can.

*We made our third batch of mince pies yesterday, Allan doing the preparation, and me filling as best I can .........we ate the first two lots, but I'm expecting a couple of visitors today so hope they last. I love them, and could eat them all year.

Aileen....X

Snowed in!

This morning at Home, from the Front Door.... coldest November/Dec for a century.

I've been meaning to 'Update' for sometime, especially 'Health' news, but will post more later.

Allan walked here and back home again on Tuesday, normally he can be here in 10 mins, especially good if I 'need' him. But over an hour each way with him walking.......Been on my own , but he is walking here again as I type, and will collect some milk and bread en route.

Hope everyone is OK and managing to keep warm

Aileen...X

Another update!

Just to say.......I've been home for a few days now, and thought I ought to let Friends know how I am.....


The recovery from Laser Surgery (Laser ablation dysplasia of the Orapharynx) took longer to feel comfortable. I was very unwell (sickly, and unable to swallow for a few days) after the Biopsy in June, BUT, this was different than I expected, and it has taken around two weeks to eat normally, but no sickness The Hospital staff were very kind to me, regarding the injuries of the recent fall, and between us it was manageable. Bruising completely gone now, but still a lot of discomfort in Wrist/Hand......will need treatment for this, have to contact my own Doctor soon.


However, I go to hospital for the results of the Laser surgery on the 9th November, and hoping for a good outcome. I still have the 'sore troat' (Pemphigoid) that I've had for over 4 years, and was hoping those 'feelings' would be gone.....but still the same.


I didn't want this 'Blog' to be only about being unwell, but that takes up a lot of my days.

I do have a life..... and we do go out, and do all the normal things, but at the moment Allan has to help me a lot. He doesn't stay as much now I'm improving, and he has his own home to maintain.


Miserable day weatherwise, and I'm not looking forward to the long dark nights, and shorter days. We had a beautiful Autumn day yesterday, and managed to drive to Bolsover, but staying put today







Thanks for reading, and I will update soon.....Promise!























Aileen....X

Just a brief update.....finally going in for Laser Throat surgery on the 12th October.Very nervous, but after recent cancellations, need to get this over with.







As stated in my previous post, the date has been changed several times due to different circumstances.



It has been very difficult after my fall, unable to do much for myself.....Allan is now very experienced in shampooing, and blowdrying my hair etc. and I've slowly become a lady of leisure, unable to cook or wash up afterwards. Luckily Allan is a capable chef.



Now managing a little better with the 'painful' hand, but after 3 weeks unable to sleep, burning/tingling sensation. I can now move my fingers a little. Had to see my own Dr at the end of last week, and she feels it is the 'Carpel tunnel'.....which I had sort of diagnosed myself, via the internet, as I fell directly on the hand, she may give me a Cortisone injection in a couple of weeks, or refer me for Surgery. I've been given Amitriptyline, just for the sleep problem, but only had one decent night so far!



Anyhow, I've accepted the new date for Throat surgery, and hope to be able to cope with it all. The bruising of the hand/arm is almost gone, but still very sore.



Sorry not to write more, but still typing with the left hand, and very tiring. How we take 'being able' so for granted.



This has certainly been a year to remember, and Allan is still unemployed. BUT, it has meant he could be here for me.











All for now







Aileen....X

Update on previous Post......

Just an indication of what life is like just now, this is one week on, so things have improved somewhat visibly.....I couldn't 'unbend' the fingers at all, slight improvement, apart from the thumb, but the pain doesn't go away!

We returned to the fracture clinic on Sunday morning, as advised, and it was a vey nice lady Dr. She confirmed that the wrist is not fractured, but they had some concerns, and she showed me the hand Xrays. It was felt that I had a problem, probably from a previous fall.....gaps between the bones. She wanted to refer me to a Surgeon in a couple of weeks time. I explained all that was going on in my life with health just now, so it was agreed to wait for now.

I've had to cancel my going into hospital for Laser treatment on my Throat on the 28th now, and waiting for a call to offer me another date.I couldn't possibly cope in this condition.I was offered August 17, and they cancelled 4 days before. Offered 14th September, I declined as we were going away,( We should have been on holiday this week, and lost almost £400), then offered the 28th...now cancelled You don't realise ,,how debilitating it is to only have your left hand, especially if you are right handed as I am. I have trouble with dresssing/undresssing,eating etc. Allan is having to do everything for me. Can't even brush my Hair, and the pain goes on and on.

This is brief, as I can only type with one finger on left hand, and it takes forever.

Thanks for reading, and commenting.

Aileen....X

Things can only get better....or can they?

Where to start?

This posting will be difficult, as I am typing with one finger, on my left hand. Being right handed, it is quite difficult!

I've intended to update for a while now, but life (health) got in the way.

We should have been on holiday from today, going down near Kent for a week, prior to my Laser Surgery for Cancer in situ, in my Throat.
(Now to be the 28th September)

Friends who have followed my very rare Postings, will probably remember my health hasn't been good....


Just to bring things upto date......briefly, as I don't know how long this will take.

After having Throat problems, along with other complications for over 4yrs. I had a Biopsy in June, and it was found to be the stage before Cancer. Was promised I would be in Surgery within the month. also they found a tooth that needed attention, so that was now going to be done at the same time. I wont go in to the Dental saga, but that was taken out at the Dental Hospital 3 weeks ago. I was due to go in for the Laser surgery on the 17th of August, so everything was .moving along before our Holidays.A phone call from the Hospital 4 days before, cancelled the August date, and could I now go in on the 14th September? I felt this not possible, because of going away on the 18th.....now given a date 28th September. We had also cancelled our Holiday for May,moving it to September, thinking things would be 'sorted'.we rented the same Cottage, but as we changed the date, the price was more expensive. Unfortunately, we had cancellation Insurance for the previous Booking, but we did not realise at the time, the Insurance was not carried on to the new Booking.......therefore, we have lost the amount paid, and a pretty little Cottage is sitting empty, as I type. We have tried to book this Cottage for the last three years, and this was the first time we had made it! Somehow, not meant to be.





are you keeping up so far?





Two days ago, getting ready for travelling today ( 18th) I was almost packed, but regrettably now......I had a last tidy up in the Garden, and watered some new plantings, as I 'unhooked' the Garden hose, I lost my balance and fell backwards....but landed on my right Hand, resulting in a large swelling on my wrist, and elbow, and much bruising. I lay there hoping someone would hear me but nobody around....eventually pulled myself up, got in the House, and 'phoned Allan. didnt know at the time I had also cut my toe, so there were blood spots on a pale green carpet! least of my worries at the time.


We went to A & E, about 8 miles away, after numerous X-Rays, it was decided I needed to go to the Fracture clinic, and couldn't be seen until Sunday morning....I have a splint on at the moment,and as you can imagine, being right handed...everything is difficult. Allan is very supportive, as I can't even take the top of the milk! It has been an 'Annus Horribilis' for us. You may remember that Allan was made Redundant at Christmas, and as yet no job on the horizon.

We really needed this Holiday, but doesn't look like we will get away now. We tried to think who could go in our place ( a free Holiday for someone) but most of our Friends were either on holday, or otherwise occupied.....

......to be continued


Thanks for taking the time to read.

Another update

Sorry for lack of information re my recent Biopsies



Have tried to 'write' but things are difficult just now......and the results not what I wanted to hear.



I did go into Hospital on the 8th June, had to be there for 7.00am, and I was first to Theatre. I was told I would be fifth, so with the change, had to rush to get into Gown etc....then off to theatre. I was unusually calm, thinking this is going to clear the problems, and give me some relief. When I came round I had a very sore Throat/Tongue, and stitches in the Throat. The Consultant came to the Ward in the Evening, and stated that 'they hadn't removed any Tumours' everything else he said after that just washed over me. I was home the next day, and after the Anaesthetic wore off, was really unwell. Was very sick, and it even hurt to swallow Water.Had to do a lot of this, because of various Medication including Diabetes. My own surgery is considering putting me on Insulin, but waiting until I 'get over this' first I lost 11lbs in 6 days, not a good way to lose it though! Allan and I communicated by Mobile phone, from Bedroom to Living room, me ringing and ringing off, as I could barely speak. My voice hasn't come back fully as yet.

What kept me going was the thought that it's over, and they didn't find anything untoward. I've had this sore throat plus all the other conditions associated with Pemphigoid for over 4yrs, and attended Hospital since September 2007.



Anyhow, I went for 'results' on the 13th July,also have to go to collect Prescription. My own Dr will not prescribe this medication, as it is very specialised, and expensive.



I had two appointments, the usual clinic 'upstairs', and then on to see the Consultant Surgeon 'downstairs'.

We were called in to a different room than usual, and the procedure wasn't the same, and no examination at this point.

I was told that I had Epithelial Dysplasia, mild in some areas of tongue etc, moderate in others but severe at the back of the Throat. The severe part of it is Cancer in situ. I do not have malignant Cancer, but that is the next stage. I am to have Laser surgery,don't have a choice, and it should be done in a couple of weeks time.Also, I will have to go to Clinic every month thereafter, and for the rest of my life. We then were ushered downstairs, and I jumped the queue, as I was next to be called in, and saw yet another Consultant as mine was on Holiday. Things were explained to me, and he asked me to promise not to 'look things up' but I didn't agree to that.....

I also have another problem tooth, have tried to see my Dentist recently, go tomorrow 19th. But, if it is still intact when I go into Hospital, they will remove it while I am asleep.



Sorry for the gloomy entry, but I am so down just now......and have put off writing.
Hope it's not TMI

Health update

Just a brief update, as I'm going in Hospital tomorrow (8th). I am having a Panendoscopy (screening for Throat Cancer). We have to be there for 7.00am, and I will be put to sleep... If all goes well, I should be home in the Day, but have to rest for 24hrs afterwards. So Allan will stay with me, although he only lives around 15mins away.



I have had this condition for a long time, and a sore throat for over 4yrs. We are hoping for a better diagnosis, and hopefully rule IT out. I do attend two Hospitals on a regular basis, also Diabetic Clinic every 4 months. With Cicatricial Pemphigoid. the Cictaricial part of it is the 'scarring' in the eyes. Outwardly I look quite 'normal', but do have some days which are not quite so good.



Thank you for your recent comments and concerns, and I will update again soon.

A worrying time

Hello! I've tried to write an entry so many times this year, but trying to put down words has been difficult......



My last entry was 'miserable', on my way to having my two front teeth removed because of an Abscess. I received 'comments' and emails wishing me well, I was very frightened, but the Surgery went well, and I continued with Medical appointments, attending two Hospitals, one for Eyes, and also the Oral Maxillofacial every 4 months. I also have to visit my own Dentist every 3 months. As I've tried to explain before, My condition is a compromised Immune System, this along with Diabetes, takes it's toll. Outwardly, no one is the wiser, but I get very tired, and quite uncomfortable a lot of the time.



Allan was made Reduntant at the end of 2009, after 23yrs with the same Company, that is a Story in itself! However, although it helps me with appointment etc. and more time together, it has knocked him for six. He is on a course today, so that is my 'excuse' for doing some practical things, and thought also of bringing things up to date.



I attended the usual Clinic for my mouth in April, it was a new to me Dr, and after examining my throat. she said 'your throat shouldn't bleed like that'......also a tender lump in my Neck at one side. She called for another opinion, and they called for another opinion, then they huddled together in conversation. I was told I had to attend next morning at 9.00am to see a Consultant Surgeon. As Allan isn't working, he could again take me, and it is a good hour journey. while Allan was parking the Car, I was called in -on my own. The first words uttered were 'The People upstairs think your Pemphigoid may have turned to Cancer' after that most things he said just went over my head. He examined my throat, and said he wanted me to come in to Hospital, for a Biopsy, and I would be put to sleep. Meanwhile, by this time Allan had joined me, and we were sent for Ultrasound scan, Chest Xray,Head and Neck Xray, Blood etc.....



Now, comes the better 'option' when I was called back in ,after the Ultrasound scan. they had found an Abscess under an end tooth on the right hand side.....this is where the supposed 'lump' is, and felt if that is causing the lymph node to swell, hence further infection to my throat etc. So the tooth has to come out, and they would write to my Dentist, as I requested my own Dentist.....taking 3/4days, but I'm still having a Panendoscopy at the Hospital......think an overnight stay. not sure, but dreading it!





I rang my Dentist 3 times to see if they had heard anything, after 4 weeks of waiting I rang the Clinic, and spoke to the Consultants Secretary, after holding on, they found a letter had been written on the 30th April, but not signed or sent out! It was decided there and then, to Fax it to my Dr and Dentist, and I was asked if I would like a copy, I asked if they could also Fax to me, and I have a two page letter about myself, here by my side as I type. saying this 'Lady' has a history of many months/years of a sore throat. .....just over 4yrs actually. I was a Telephonist all my working life, so speech has always been very important in my life......





Change of subject, isn't it cold? we have a lovely sunny day, and the washing is drying, but I have the Central Heating on.

We should have gone to Kent on Holiday on the 8th May, but have cancelled, and booked the same cottage for September, hoping for better days.

It's Allan's Birthday on Friday, and he says we are having a 'Day off' and going to Buxton for the Day. There is a place we like to go for an Italian meal, and the chef is Italian, so the Lasagne is great. I struggle with eating sometimes,but will give it a damn good try.



I don't Pray, but always ASK whoever is in charge, to look out for me, and of course others in need.



Must go and get showered etc now, as I have a Drs appointment at 4.00pm, so will say 'Bye for now, and hope for better news soon.

Not a lot of people know that!

Well, where to start. I'm not around so much these days, and only rarely comment. I joined AOL Journals on 18th November 2005....(so would have been 4yrs) However I fell down a flight of stairs at home on the 25th, one week later, my house is on three levels. Struggled with so many things at that time. Have had Diabetes since 2001, and fellow sufferers will know the problems. Started with a sore throat in January 2006,ulcers in the mouth, nosebleeds (one lasting 7hrs and was admitted to Hospital),repeated Conjunctivitis, and ulcers in the Vulva. It took until September 2007, and an Eye operation, to diagnose the 'problem' Cicatricial Pemphigoid (the cicatrical part of it is in the eyes.) It is a rare condition....1 in 1.million. You don't die from it, but can from the complications. I visit 2 hospitals on a regular basis, and treated with tablets that are given to transplant patients. It is my own Immune System that is the problem. As we all transferred to Blogger, I hoped I may hear from someone with the condition. It has been an eventful 4yrs, and I've coped with Allan's help. Outwardly, most of the time I look reasonable, but somedays it takes it's toll. I have a problem in my mouth at the moment, a lump started on my Gum above a front tooth, my own Dentist gave me Antibiotics, saw the Dental hospital in January, was given another course of the same Antibiotics for 7 days, no change, now had two Xrays, and they are removing my two Front teeth on Wednesday 10th February.They will be placed on a Bridge, and placed immediately... no one will be aware, but I will, and absolutely dreading it! If the lump remains they are going to do a Biopsy at a later date.the teeth aren't bad, it is because of bone loss.



Allan was made Redundant at Christmas, and we have had that to cope with, but he doesn't complain much. I'm Retired anyhow, but I wouldn't be able to hold a job down, as you never know what the Day will bring.






If anyone is still reading, I never felt quite at Home with Journals, and less so with Blogger. but have made one or two Friends.

I'm not good at 'baring all',and can't write about everything that happens in my life, too much going on, and not all bad, but tonight I felt I needed to explain somethings...don't even know

why.

Something happened on AOL Journals, that threw me, and made me not want to participate., hence the long gap between posts, along with the ill health.....Someone, who wil be nameless,(American) wrote to me out of the blue, always commented, emailed, and even wrote me a Poem, found her a bit 'wacky' at times. Never mentioned Journaling in her own right........then found ,purely by accident, that she had kept a Journal for around 4 months. I'm sorry but that made me feel 'insecure' about 'cyberfriends'. she had quite a few followers, and came across as a really nice person, but she failed miserably in my eyes, or is it just me?

*Shows how rusty I am....The Signature should be at the botttom!
Aileen...X

A New Year

Have meant to 'update' for sometime, but 2009 has not been a good year......

The final blow came, as Allan was made Redundant from his job, on the 23rd December, as they broke up for the Christmas Holidays. He is due to finish on 29th January, unless there is a 'turn around'

I still battle with my Immune System disorder, I attend two hospitals on a regular basis, Opthalmology, and Maxillofacial, also have 3 monthly checks at my own Dentist. This along with my Diabetes, takes it's toll. Outwardly I look fine most days....and people remark 'how well I'm doing' but as it is such a rare condition (1 in 1 million) I'm the unlucky one I had hoped through blogger I would 'meet' others with the same condition. Read recently that long term stress could be a factor.

Had both the Flu and Swine Flu jabs just before Christmas, but had to cancel 8th December Hospital appointment because of being unwell. Now go on January 12th.






Allan and I will have been together 22yrs in March, but live seperately, which suits us, only a ten minute drive. Saying that he has been here over Christmas, but went home last night. I'm Home alone today, as we were meant to have a Turkey dinner tonight,cooked by Allan ( we have 3 to use) with his Parents, but that has been called off because of the steady fall of Snow for most of the Day. It is pre arranged for Tomorrow, now becoming Sunday Lunch. But we have just spoken on the 'Phone, and it may not happen, because of the Roads. So we have around 10 pounds of Turkey to eat between us .Our snow had almost cleared on the Roads and Footpaths, but still remaining on the Country Roads. His Parents came here Christmas Eve, as they do each year, but Allan had to fetch them, and take them home because of the Icy conditions.


We managed a walk in the Park on Christmas Day, and had our meal in the evening, as we often do....just us. We only met four other people in the Park, it was so bitterley cold, and the Ducks and Geese were struggling to find food, but they ask you not to feed them Bread, as they live on Grass, algea etc ......





















HAPPY NEW YEAR...... a little late