Hi From Brighton

liesa

Hiya, bit about me, I'm Liesa (as in Lisa) im 50 years old, been very happily married to my lovely husband Steve for 31 years. we have 6 children 2 boys Derek aged 30 and Russ aged 27, (Russ still lives at home and helps me loads) 4 girls Kerrie aged 29, Kirsty aged 25 Terri shes 22 and Lauren still at home is 15 1/2, we have 2 great danes Diesel almost 4 years a fawn colour male and Maci a merle girl aged 1 year, we have mollie the tortishell cat and Billy the budgie and tropical fish....
we have lived in Brighton (south east coast UK) all our lives

i was diagnosed very quickly 25 years ago with Palindromic Rhuematism, which has changed to Rheumatoid arthritis although i'm still puzzled between RA and OA, i had a total knee replacement 4 years ago ths month and have been in more pain ever since, its now classed as a failed TKR, when a review was mentioned i opted for no one doing anymore to my knee as i couldnt go backwards with the pain so i suffer with that along with all my joints playing up,

I have been under the care of Kings college hospital in London for a gastric bypass to be performed sometime in the not so distant future, this should help ease the pain in my joints as im classed as 'morbidly obese' nasty word, when i last saw my rhuematologist he told me the bone scan he ordered last september showed early degenarative arthritis in both hips, and kept saying over and over again 'a gastric bypass will help' which has upset me as im not 100% sure of this op, i ended up leaving in tears and when i went to renew my DLA my care component was stopped altho mobility part still in place, the letter said it was due to the report fom my rhuematologist and what i had said on the form, and took me 3 days to fill in...

anyways think thats enough about me, i expect ur all asleep now? hope not xxx

Hello from me xx

dreamdaisy

Hi liesa, it's nice to meet you. I hope we can answer your puzzle over the RA and OA - what is puzzling you about them? I have PA (psoriatic arthritis) and OA, and I have found the forum to be a wonderful place for support and information. I was in Brighton in early May, I love it there, and I met up with another forum member who lives there too! We got on very well indeed. I am 52, happily married, no children (by choice, I knew from a very early age that my genes are not worth passing on) and live in East Anglia. I hope you are having a reasonable day today. DD

traluvie

Hi Leisa,

Welcome to the forum.. I am 31 with 2 children and 3 dogs.I have been told i have some sort of inflammatory arthritis,.. i am very new to this with symptoms only started last september.. I have been lucky with such thorough investigation.. others aren't
The site is wonderful support and very informative.. ppl are always willing to lend an ear and advice when needed..
In regards to the gastric bypass i am not familar with this but i am sure someone will be able to come along soon and help..
Look forward to seeing you around..

liesa

Hi DD and Tracy,
leg hurting but thats just the norm,
had a slobber shower from my great danes earlier which did make me laugh... watching tv and chatting on facebook,
i was diagnosed quite quickly 25 years ago with Palindromic Rhuematism, then some years back im told its rhuenatoid arthritis, then my leg was absolutely horrendous and had an mri scan to which NOTHING showed up, so went in and had arthroscopy, which found my knee to be bone on bone and the surgeon said it was a wonder i could walk, still thinking i had RA, then when seeing other Drs im told it mustve been OA, confusing, i dont see anyone now for my joints, dont have a lot of faith, i spent 5 years back when newly diagnosed on penicillimine which had me having bloods taken every two months along with testing urine every week, no improvement at all with anything, in recent years i spent 12 months taking placquenil and 18 months taking methotrexate, unpleasant drugs but they also did nothing for me, ive tried pre gabalin, gabapentin, butrans patches dihydrocodeine, tramadol, cocodamol, Ive had indomethacin, diclofenac, lots of medications, but now just live on cocodamol and tramadol along with the bp medications, oh and amytriptiline at nights, have just added a lovely memory foam mattress topper on my bed, which has made my bed so soft, and with full dose of amytriptiline i am finding sleep a little better, not perfect but better, aso have a knee foam pillow between my knees...
i feel really happy that there is a forum that you can talk to like minded people, who truely know what im going through and vica versa

traluvie

Wow Leisa..

You certainly experienced your fair share.. must have been awful?..
On the good side though you have your family ..which can enlighten the darkest days.. My kids have a habit of making me smiling even when i climbing the walls.. them moments i cherish..
Sounds like you have been very unsucessful with your meds.. I am currently taking, Lansaprazole,Tramadol,diclofenac,hydroxychloroquine,vitamind chew(completely messed up my bowels lol) amtriptyline and depo medrone injection every 12 weeks.. I have been quite settled in regards to my pain now, but have to take my meds like clockwork or i feel it wearing off.. I still ach tremendously which makes me feel heavy and tired and have recently been experiencing problems with my hips and knees which has been causing me great problems with mobility, Online scrabble is my new best friend, i am now a master lol..It always seems that when one thing is okish, somit else comes along and slaps you right back in the face..lol.. pain..
So how do you find you cope now that you have no faith in docs(can understand why) Must be a struggle, but you sound like you have a positive vibe.. that i think is what keeps alot of us going..
Your matress sounds like bliss, may need to invest in one.. getting comfortable at night is a pain.. be nice to slip off to heaven every night on those white fluffy clouds lol..x

liesa

Tracy i just plod along in my own little world most of the time, i love reading and chatting to people on facebook and playing games on there, each sunday all the family come to mine and we have some sort of a dinner, everyone mucks into help make it, usually a nice roast but when the weather is warm we toddle off outside for a bbq, now as the weather is unsettled we just had sausages...lol just nice for all to get together,
i have the odd day when i go out usually with my daughter kirsty who was my carer before she lost that, but she is just happy to do anything she can to help me, bless her, we toddle to the garden centre, usually the fish centre in there as i have a tropical fish tank sitting next to my chair that i spend ages just watching, very theraputic lol, every saturday hubby Steve takes me into the town for a little nosy around the shop and some lunch, lovely time we have, spent 30 years of raising the kids and now its us time im worn out and ready for the scrapyard!!
am reading a book now so in and out of the computer lol
xxxxxxx

traluvie

Leisa i love reading, facebook and scrabble.. my new best friend lol..
I rarely go out and like you i have some close ppl around me who support me..
What kind of books do you liek reading? what are you reading now?

tjt6768

quick hello and welcome from me too..

Hope things aren't too bad for you today.
See you around the forum.

liesa

Hi Tony thanks for the welcome xx


Tracy, Steve is always telling me off as i like (the wrong word) for not sure what i would put them under, like biographies, a child called it, the lost boy, Torey Hayden books, Angelas Ashes, that type of book, altho im reading a slightly different from them at the moment and third of the way in i remember i read it before,, 'Nurse on call' i can only read little and often cos my hands shake, so of putting
what do you like Tracy??

tjt6768

Not a problem, you'll find you can make yourself at home soon enough..

Living with section is great for info/advice etc, you've probably found this out already...
Lol
Chit chat is great for having a good laugh etc.. Val's cafe is very welcoming..

Just jo in in whenever you like mi dear.

traluvie

Leisa..

I know the books you mean i have many on my book shelf..
I have had to change my theme though as i was getting quite upset about them and having weird dreams so have now converted to crime books lol.. James patterson, karin slaughter, patricia cornwell.. Like horror books too, although i have not read a good one for a while now..
I find it awkward and uncomfortable to hold a book now, it sucks lol.. May have to invest in one of them kindles, you seen them advertised.. Books at the touch of a button, like an i pad i think..Something for my birthday hmm!!

liesa

snap!!! i aksed for a kindle from all the family for mothers day they all wanted to chip in.. but i was having pain and being stroppy and told them to leave it this year... they all wanted to go against but i wasnt very nice but they have offered to buy me it for my birthday, which is september, but holding books really hurts aches so much sometimes, my hobby is my dolls house, its a replica of someones home made in the 70's no idea by who as i bought from ebay, but its amazing and the scale isnt as my other one which is 1 12th scale, and fiddling around with the tiny pieces makes my hands ache to,

traluvie

My Birthday sep too, so maybe we will both get a nice birthday treat to help with our tired hands.
I used to love drawing and being creative but like you it aches my hands after a while.. Would be lost without the internet, how crazy does that sound lol..
How long have you had your hobby with your dolls house?? I remember making them when i was younger out of card board boxes and scrap material, kept me amused for hours...

liesa

i did to, make dolls houses out of odds and ends, i remember making a puppet theatre once..lol
i started this about 5.6,7 years ago, my daughter was saying this s the now 25 year old 'should we make the dolls house out of lolli sticks' lol then Steve bought me a kit form dolls house and i loved it but needed another one that didnt have a staircase that ran through the bedroom lol.. so we started making one and also bought one from ebay up in essex... my favourite

come on then whats your birth date mines 15th sept xxxx

traluvie

Leisa,

Thats lovely you have that hobby.. i love it when the kids get creative homework.. i end up taking over lol, telling them what would look good, sure they get annoyed lol..
My birthday is the 3rd.. was oldest in my yr.. i loved it lol..xx

liesa

my youngest Lauren shes 15 shes the 2nd of september, not always the best thing being the eldest child in the class, she was always the tallest girl to.. and being the youngest of our 6 children shes never acted her age... shes to old for her own good,

do you know somedays i feel so scared for the kids im scared they are going to develop arthritis, i know some of them have pains and often at the Drs with knee pain, always been told its 'growing pains'.. i had 'growing pains' all through my childhood, only going on to have my left knee replaced 4 years ago, one was told she had one leg shorter then the other by 3cms, i only noticed my troubles beginning when trying to push the buggies etc, the last pregnancy wasnt good but when Lauren was 4 months old i had to keep one of the girls home from school as the pains and swellings on my hands and fingers i couldnt change nappies etc... wish i could change things sometimes....

traluvie

My daughter is 14 27th Aug(youngest in class) and she worries she will end up like me, i have endometriosis which i have suffered for over 12 yrs which my mom also had, so Tammi naturally worries.. It's hard for her to see me the way i am now as i have always been so active. she had me crying last week when she broke down and said "mom i'm fed up of you being ill" broke my heart.. She is a god send though and i am very proud of her, my son is 9 and he doesn't really understand so much, he's happy with just spending time with me..All we can do is be vigilant and supportive and guide them if anything seems familar..
I went for my hydrotherapy assesment last week and the physio said my left was shorter than my right, had i realised this, ?? No lol..Also he said my right ankle was very mobile.. I contacted my mom via facebook(we don't speak) and asked her if i had any problems with my feet.. she said i had insoles made for my shoes to support my ankles and feet to give them strength, so like you i wonder if the problems in childhood have lead to problems today??

liesa

i think they do start long before we're actually diagnosed i mean back to childhood, my mum used to sit on my bed whilst i was thrshing about in dreadful pain, she used to rub my legs and then wrap my jama jacket or my bed jacket round them... oops showing my age lol, only at night times this would happen tho... very strange.

traluvie

I am going to mention what my mom said when i see physio next week see if it helps in anyway..x

liesa

it wont hurt will it so a good idea,

i dont see any Drs or anyone now for my problems, think i got written off..lol the Rhuemy wasnt particularly nice to me and said the same thing over and over, he saw my results from the bone scan and really went on about the gastric bypass which i've seen Drs in London for, waiting for that but i said to the rhuemy do you think its in my head??? he just repeated it several times... 'i think you will definately benefit from a gastric bypass' but i have a fear of dying from either the surgery or later problems, so the last thing i want to hear is a rheumatologist telling me his opinion to go and get it done....

traluvie

I am not surprised you have lost faith.. seems such a shame you have to suffer though.. would it be worth thinking of seeing another doctor?/
My inflammatory arthritis was diagnosed through bone scan, so i presuming your rheumy detected something but felt it more important to tell you about bypass??would have been better if he had investigated further and set you on the right trail other than fobbing you off to another specialist.. Regarding operations, i have had that many due to gynae problems i have lost count.. i'm used to them now but i understand it can be daunting for some, but if it something needs doing, hopefully it will benefit you..xx

liesa

Thanks Tracy, sorry i didnt answer you last night xx

i sent that email to my local MP, he wrote standard email back, i then put down a whole day in the life of myself, hes now answered me a really nice email and wants to contact my Dr and see whats going on with me then he will get in touch with the DLA and help me with that, making me smile xxxx

traluvie

Thats lovely you have your mp support.. that could really make a difference..
Fingers crossed it does.. keep me updated please..xx

liesa

will do Tracy, see i joined here just a day or two ago and now i'm smiling, at east i can say i wont give up without a fight xxx night xx