Date: 17.10.2015
From: lois
|
Subject: message for Colin
My rheumy nurse is doing more bloods to check if I have RA or PA she said "the disease is bad enough without people being flippant about it and you should know exactly what you have". They treat it the same however.
My meds have been doubled inflammation coming down but not as quick as she would like. I am finally getting some where with it all. How are you and Mrs Colin doing? Is life becoming any easier? We had a short break and Mum went into resbite and she was so busy she said it was just like a holiday so I am relieved about that. Take care x
|
Date: 17.10.2015
From: Colin W
|
Subject: Re: message for Colin
hi lois , so pleased yopu are getting somewhere & they stop just brushing you off with OA & the inflammmation is coming down , realy know little about PA , just been through alot with RA as for us , my leg is still not right & being dressed 3 times a week , atleast they got conpression on it now so hope within few weeks it should improve as for mother-in-law , almost 3 months now , they are sorting out funding , we got carers coming in just once a day , dont think see would agree to rebite but the boss realy needs it , in some ways its improving but there is some damage & not sure if its the stroke or she has some kind of dementia , she is not rational & everything has to be done at that very moment + when she gets tired her talking is just gibberish & when is is better yes dont always mean yes & same for no , she can get a few words out sometimes but we are having a carers assessment done along with the funding being sorted but dont know how much longer we can keep this up
|
Date: 17.10.2015
From: lois
|
Subject: Re: message for Colin
Hi Colin, your wife must be exhausted with it all.
I know first hand how difficult it is. I do hope they get you some funding and lighten the load for you both.
It is just unfair the way they leave us to be nurse cook cleaner bottle washer you name it. My Mum as you know has dementia and the pills she is taking don't seem to be working for her. She is also very demanding and blames me for everything. I appreciate it is her illness but it is hurtful and very hard to shrug off some days.
What can we do?? They need our help and that is what we do.
Your leg is taking time to heal poor you.
I will be glad to know which arthritis I have at least I will at long last be able to say. Take care both of you x
|
Date: 18.10.2015
From: Colin W
|
Subject: Re: message for Colin
been trying to get the boss to clear off for a bit , few days , been telling her me & mother-in-law can get some tough love , only thing is not sure she would comeback today when she wants to come upstairs her mother starts crying , just dont think she is allowed to sleep/eat/wash or rest , she had 10mins sit down this morning & her mother decides she wants to go in the garden , puts her outside slippers on & coat which she cant zip up but is not safe to be out there by herself Gina would like to have a go at our garden but her mother insist she helps her in pottering around doing very little , when we could get the power tools out & have a realy go at it , know its good for mother-in-law to have a interest but she wants someone there all the time , she cant opperate the tv , still cant read because of the stroke but she cant think about anything apart from what she wants & needs realy dont know how much longer this can go on for , if they gave us a sitter or someone that could take her out for couple hours a week it would help , she would never agree to restbite but without it I think either she improves alot or need to look at care
|
Date: 19.10.2015
From: lois
|
Subject: Re: message for Colin
Hi Colin, I didn't realise just how tough it is for you and Gina. I think Social Services should be sorting some free time for you both.
They gave me 2 hours on a Friday for Mum. Rachael takes her out for coffee or to a garden centre shops or to the park. 2 hours is not long but I look forward to it. I hope they can sort something for you all soon.
I am leaning towards care for my Mum but then I get the Guilty feeling. I know my health is suffering as I am stressed all the time. Maybe your wife could do a long week-end and perhaps her Mum might appreciate more of what she does for her. Take care both of you chin up. xx
|
Date: 19.10.2015
From: sleek fox
|
Subject: Re: message for Colin
Can I butt in here and say how sorry I am you are having to deal with this, Colin. My uncle had dementia and my aunt could never do a thing, it was very hard on her. Eventually, he had to go into a home as he started to get violent. You should ask Social Services for an assessment for both your MiL and a separate one for your wife, as carer, carer's needs are taken into account these days too. If you don't get anywhere with it, then go to your local councillor and get them to look into it. It sounds as if your wife needs more respite. They can allocate a support worker in some cases, as far as I am aware. Best of luck and too you too, Lois.
|
Date: 19.10.2015
From: Colin W
|
Subject: Re: message for Colin
thxs guys , my wife has a brother but he lives 160 miles away , offer to come down so we could go somewhere , turned up 12.30 & gone within few hours , he seen his mother in hospital once & here for couple of hours , Gina's father last year died but he had parkinsons & a bit of dementia but mostly affected his short term memory so she is used to caring for someone but her mother is being so demanding of all her time which is not fair just waiting for the assessment & the one for carers as well to see what they come up with but think something has to give as we cant keep going along like we have
|
Date: 20.10.2015
From: lois
|
Subject: Re: message for Colin
Colin, when they come to assess your Mum and yourselves. Tell them your are looking for them to find a care home as you are unable to carry on like this. I have a feeling they will give you the help you need.
If they take too long with appointments ring them and ask for a date. You are right something will have to give. Has your mum-in-law been tested for Dementia? It does make a difference in the care you will receive. It certainly does in the area I live.
I also have three brothers they all make promises to do more. Pig,s might fly as well.
I hope you and Gina get some help soon. Hang in there. xx
|
Date: 20.10.2015
From: lucy
|
Subject: Re: message for Colin
Hi Colin, I just wanted to say that I hope things work out for you and your family. It can be enough dealing with our own conditions without all the added worries so I really hope you get some help with your Mum-in-law soon. I hope you are continuing to improve on the rituximab and things get easier for you. Take care xx
|
Date: 21.11.2015
From: Colin W
|
Subject: Re: message for Colin
want to do quick update , seen consltant yesterday , he is not happy with me & going to get one more chance with the biologic in new year , if I cant reduce my steriods down then he will change it having problems with my knee so had x-rays done of both knees & steriod into right knee , its feeling bit better today so hopeful it will improve over next week or so , also they done test for cadmium ,but after 26 years dont think it will still be in system & he is going to arrange a scan on my liver , they are doing research on long term MTX usage & the affects it has on the liver
|
Date: 21.11.2015
From: lucy
|
Subject: Re: message for Colin
Hi Colin, Sorry to hear that you're not doing so well on the rituximab, I thought it was helping you too. Glad you're knee is feeling a bit better, remember and rest it for a couple of days after the injection. Hope the scan is ok. xx
|
Date: 22.11.2015
From: lois
|
Subject: Re: message for Colin
Hi Colin, sorry things aren't great for you. Lets hope those steroids do the job.
Lets hope the New Year brings a better drug for you. Having a few checks done will be good. Take care x
|
Date: 22.11.2015
From: Colin W
|
Subject: Re: message for Colin
thanks guys , dont intend to come off rituximab if I can & do my best to reduce my steriods trouble is the steriods helps but increase the immune system so MTX dont work & need to move & to do that need steriods but they also cause type 2 diabetes & problems with my leg/skin etc dont know all the answers , but this biologic works a bit & if there is nothing to replace it why stop it lois , are they any closer to telling what is going on & are they giving you any medication for it now ?
|
Date: 22.11.2015
From: Lois
|
Subject: Re: message for Colin
Hi Colin I am on Sulfasalazine 3 x twice a day.
I am going back to see the Rhuemy nurse in December should know from a blood test if I have RA or PA.
They will also decide if they need to put me on another drug as well. At least I am moving on now. I have had a few good days after the first six weeks then another few good days when the upped the meds to 6 a day.
The pain is better but not great. I am not really sure what I should expect to be honest. I will have another good chat with the nurse she seems to explain anything I ask in an easy way to understand. So just down to waiting I think. Take care and thanks for asking.
|
Date: 22.11.2015
From: Colin W
|
Subject: Re: message for Colin
pleased they are at last doing something , took long enough but I am not a expert , it dont matter to much what label they put on it as treatment will be the same , helps when you have a contact to help wjen you need it
|
Date: 23.11.2015
From: lois
|
Subject: Re: message for Colin
Thanks Colin, you were the one that made me push hard to get an answer. They told me the treatment is the same but the nurse felt I should know for sure which Arthritis I have. I think she is right because when people ask me I say it could be RA or PA and they just frown. Hope mum-in-law has been assessed. Are you getting any help yet? Take care x
|
Date: 02.01.2016
From: Colin W
|
Subject: Re: message for Colin
hi lois , was thinking putting on wig & dress & entering your thread but got scared , anyway pleased after so many years they decided its not OA & giving you the drugs to help at last , with myself my right knee is knackered & they decided it ware & tear so must be OA in it & just because when the consultant injected it with a steriod & found alot of inflamation got nothing to do with it just cant beleive how bad our NHS is at some times , hope it goes well for you , still not sure they got it right & not PA but the treatment is the same , & I got infusion this week so hope I get some benifit from it
|
Date: 02.01.2016
From: sleek fox
|
Subject: Re: message for Colin
Colin, join our thread! The more the merrier.
|
Date: 02.01.2016
From: lois
|
Subject: Re: message for Colin
Hi Colin. I was told definitely Sero negative RA.
The nurse did another blood test as she said it was only right I had the correct diagnoses.
Poor you Colin lets hope you get some answers soon.
How are things with mum-in-law? Take care and a Happy New Year to you and your wife.
|
