just learning

millie78

Hi I'm new to these forums. I was officially diagnosed with ra this summer although I know I've had it for 8 years. I'm 33 and have had 4 children in the last 9 years with each pregnancy hiding the symptoms and then a major flare up occuring afterwards. I was having a bad flare up when my consultant diagnosed me through blood tests scans and stays. He said he'd do his best to keep me out of a wheelchair which devastated me to realise that's q possibility. I use paracetamol and anti inflammatories to take the edge off my pains and started hydroxychloroquine sulphate 2 mths ago.
Since thenhavnt had a severe flare up only daily mild aches and I worry that i could be taking the latter drug unnecessarily as it takes 3 mths to work. Is there a chance now I'm not planning anymore children that I won't suffer severe flare UPS anymore?
Secondly when do you feel appropriate to claim dla? Currently I would feel it rather fraudulent to do so but back when I was immobile on a regular basis I started to claim but stopped because 4 days of the week I lived normally and. 3 days I would be completely immobile, the form is difficult to explain the varied symptoms.
Lastly id love to hear from parents withy young children and how you cope. For me the hardest thing is getting them to school on a bad day I either have a long walk pushing a pram or a drive which I physically can't manage having to strap 2 babies in and out of carseats at both ends of the journey. I know people say ask for help but as fantastic as my family are I cannot ask them to drive 15 miles through rush hour traffic to take my children to school. Also my youngest has only just started and only wants mummy to take her. My partner is fantastic and very supportive but works 12 hour shifts so is never here to do the school run.
Apologies for such a lengthy post and any typos I'm using my mobile which is not easy!
I look forward to help and suggestions.
Millie

stickywicket

Hi Millie and welcome to the forum. The is it/isn't it arthritis thing is a fairly common experience. You say your 4 pregnancies hid the symptoms which I think maybe a bit unusual. I had a ball during my first but a nightmare during the second. (There was no 3rd!)

You say you look forward to 'help & suggestions' but, the way you're managing to cope with 4 children and RA, I think maybe it's you who should be giving the rest of us suggestios It can't be easy, even with a helpful family.

I guess there's always a chance that, if all your flares have occured after pregnancy that you won't have any more but I think it's only a chance. I flared badly after both mine were born but I've also had other flares. The good news is that it looks like the hydroxychloroquine is working for you. Yes, it can take up to 3 months to work but that doesn't mean to say that it will. Once things get stabilised it's all to easy to believe it would have stabilised on its own without the meds. There's only one way to find out but I wouldn't be taking it if I were in your position.

I'm sorry, I can't help with the DLA thing as I got it so long ago it was all different then but I'm sure someone will be along soon who can.

We have a few mothers of young children on here (Mine are now grown up with their own families) and hopefully you can share experiences. I'll look forward to seeing you around.

CJHunter

Hi Millie, welcome to the forum.
I am unable to help re:children as i dont have any, and am inspired by your strength to cope with 4 little ones daily.
DLA is a difficult one, I would apply and put down how you are on your worse day, it is good the meds seem to be working but remember what you were like and are like during a flare. That is when you need the extra help and dla can help with that.
You would not be a fraud applying/claiming as you have a disability that impedes on your life.

As far as meds go i think you should talk to rheummy about how you feel and discuss whether it would be appropriate if you could stop it for a while to see how you are?? No one likes being on these drugs, but if they help and make our quality of life better hey....

Take care, others will be along soon im sure

millie78

Thanks you two for your kind responses. I did call my consultant and ask if I should stop the drugs as a trial and he said no as my tests results leave no doubt about the diagnosis. I guess I just can't help being hopeful that is wrong, is that stupid of me? I wanted to know what real peoples experiences are.
As I write and tell you all I don't have flare UPS anymore I start to analyse (possibly over analyse) the mild aches I describe. I question what is normal for someone of my age with good health and four children to feel? Is that normal? Currently its 4am and my I'm sitting up because my feet and ankles throb and I get flitting pain in arms and legs. But because these are nothing compared to theeve flare UPS I've suffered in the past until I analyse I assume all busy mothers feel this. I guess I'm probably wrong.
I know we are supposed to treat every pain to avoid damage to joints but as I don't totally believe this is ra and because dispite the stomach protectors the anti inflame give me upset bowels I don't unless I'm in real agony. I need to talk more with doc about this I know.
It is quite useful writing this down and it brings me back to thinking about dla and it seems reasonable to claim but then I read the criteria and I'm frightened off as although I'm in agony at my worst I still get my children to school by hook or by crook so I can't be that bad can I ?

traluvie

Hi Millie,

Welcome to the forum,
I am 32 with 2 children of 9 and 14, with inflammatory arthritis and osteo arthritis..I used to be unable to take my son when he was at first school, luckily for me someone who lived not too far from me offered to take my son and bring him back for me as she was taking her own daughter, is there anyone close by that could take your youngest for you??I was told that if you spoke to the school about how difficult things were they can help out so maybe that might be worth trying..I know it can be hard to ask for help, but sometimes we need to..
Regarding Hydro it took a while for mine to work, about 12 weeks but once they kicked in they have helped alot in regards to my pain so i hope they work as well for you..
DLA , well it's taking me ages to fill in..Have been turned down before and have been advised to reapply but it is hard to know what to write and how to word it..Citizens advice are helping me, maybe worth ringin them for advice..

barbara12

Hi Millie
And a very warm welcome from me
Im sorry I cant help with your meds, has I have OA, but you stay with us, there are lots on here that will be able to offer some advice.
Wishing you well with it all. x

bubbadog

Hi Millie, I just wanted to welcome you to the forum, I'm not the one to give you advice on the things you where asking about as I don't have any children. I just wanted to say Hi. Amanda/bubbadog

suzygirl

Hi Millie and welcome. I agree to keep taking the tabs, as it helps to stabilise the symptoms. You certainly have your hands full, i don't know how you manage!!!

Is there a mom you get on with?? Can you take it in turns to take the children to school?? It is useful to have a back up plan for any parent, let alone one with ra. If you don't know anyone the school can help you out. Maybe if you can collect the children and another mom takes them?? Any little helps.

My lads are teenagers now, and I am grateful. I take my hat off to any mother with arfur and young children. Take as much help as you can get and try to rest as much a possible.

Take care

millie78

Hi everyone, thanks again for the nice welcomes.

I know i'm a softy, there are people i could ask to take my children to school, but i can't bring myself to as i feel a failure of a parent, my youngest would find it hard going in with someone different as she has only just started school. I have just realised though, that disabled children are allowed to be driven into the teachers carpark, making the walk much shorter - and perhaps something i should ask if i'm able to do then i could leave my 2 babies in the car safely whilst dropping the other 2 into class. Because for me thats the hardest bit - manouvering an 8mth old and 2 year old!

Thank you for the support re dla forms. Ironically i used to work in a job that supported carers and i was trained to and regularly assisted people to complete the dla. I think that is why its hard for me to do it myself, because we really had to overemphasis the bad days for people with things like RA as the forms are geared for someone with a more 'uniform' disability. Doing so makes me feel rather fraudulent. But i may be of help to you traluvie if you wanted any?

Thanks all xx

dreamdaisy

Hi, it's nice to meet you though I am sorry you have had to find us. Are you on any other meds apart from the ones you have mentioned? Most people with RA are on meth or summat similar so I am assuming that you have not yet started that. The only anti-inflammatory that worked fro me was celebrex but my GP took me off that as it was costing him too much. It sounds as though you are actually coping quite well if all you are feeling are mild aches and pains, so maybe the hydroxy is doing more than you realise. If paracetamol is also removing a sufficient edge of the pain then that is also a good thing.

I reluctantly applied for the mobility component of DLA after being on crutches for a five years from 2002, and was astonished to receive it. I am far worse now than when I first applied, I will be shortly graduating to a rollator for every-day walking (complete with a seat - ah luxury!) but will not be applying for the care component as yet, despite life getting harder. How you are managing with four children I have no idea, I cannot even manage me and my husband with much competency now. :roll: Apply by all means, there is no harm in trying, but they are really tough in their criteria now so don't be surprised to be turned down. Come and talk to us, we know how tough and tiring life can be, we do understand. I wish you well. DD

traluvie

Hi Millie,

Sounds like a good idea about driving into school, would definately save getting the younger ones out and carting them along..Schools are normally pretty good at helping out of they can, so i am sure once you have spoken to them you may feel a bit better, But i know what you mean about feeling guilty..I do it myself with my two, I had them both moaning at me saying they were bored and wanted to go out(we go on walks by the lake or through muddy meadows) but there was no way i could of done it, and it made me feel bad..no matter what other idea i thought of doing it was no no no lol, in the end a neighbour called for them and they played outside so they were happy..We must try and learn not to feel guilty but it is easier said than done, a mothers pride is very strong...Mine are at the age where they should understand when i not too good although sometimes they play on it which is naughty , but thats kids..lol..
I think you are doing an amazing job with keeping things going and 4 children...I wouldn't be able to cope lol.. so good on you..
Thank you for teh offer of filling out the dla form, i would be grateful for any tips thank you..Feel free to pm me ..x

ironic

Hi Millie,
You have had some great advice already so I just wanted to welcome you and say that I think you are doing amazingly well caring for four children without the added problems that ‘Arthur’ brings.
I hope you get a good response from the school when you speak to them, I am sure you will.
Take care,

I x