Arthritis just doesn't affect us does it: I have... - NRAS

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Arthritis just doesn't affect us does it

Marionfromhappydays
Marionfromhappydays

I have 2 daughters and my youngest one is 10, she's a very gentle soul and very intuitive about me; She's worrying about me and things are beginning to manifest in her getting heachaches and yesterday she had an achy neck.

These basically mirror my latest physical problems, yesterday upon picking my daughter up from school she was crying and really upset because she thought I might have been involved in a car accident on the way to get her. I reassured her not to worry but when we came home we had a good chat and she said she worries about me alot.

Last year I was really ill for about 5 weeks with pneumonia and ended up in hospital for 5 days, as you can imagine my children especially my youngest were really upset. My daughter thinks the same is going to happen.

Being stoic really isn't me but I've tried not to winge and I generally use humour to diffuse my bad health but vomiting, being in bed because I am having a flare , migraines and injecting medication is all hard to hide (well I do hide the injecting, but she knows I have injections).

Anyone got any advice as to how I can help her. I'm very open and said I AM going to get better and I say the medicine will make me better but all she can see is that it makes me worse !

I've got several hospital appointments coming up (I need laser treatment on my eyes for an iridectomy) and I can't hide the fact I'm going hospital as I won't be there to pick her up from school plus my eyes look like I'm jacked up on amphetamines (boy big pupils are freaky).

My other daughter seems ok with things, she's older but I know she must feel crappy too. I've asked her and she says she's ok.

It's been such a bad year, my step dad died, my dad is really very ill, my mother in law has terminal cancer and I've got this, my children are literally surrounded by ill people (they don't know the extent of both their grand parents problems).

I currently am in between treatments for my arthritis, 2 DMARDs I've tried I cant tolerate and I've said Im not keen to try Leflunomide due to specific side effects and my medical history.

Rhematology nurses are saying they are waiting to hear back from consultant as to what my plan of action is but I have a face to face appointment in 3 weeks and feel I will be left adrift until then. In the mean time I've developed a big bump on my already swollen left ankle and I am in constant pain, i flare quite often in between so bad I literally can't get off the toilet and my husband helps me.

I've been offered the depo injection but the last one really didn't help too much so I don't see the point and I can't have oral steroid as it increases the pressure in my eyes 🙄

All around its a mess. I'm trying really hard not to look like I'm in pain, I get back from school after dropping them off and some days I cant get out the chair for ages.

Maybe I should try the depo again , I really don't know. I feel quite optimistic that I will find the right drug, I'm encouraged that methotrexate did start to work on my joints before my body couldn't tolerate it so things do work. It's really testing my resolved but now I see it's not all about me and my family are really suffering too and that upsets me the most.

My husband has been an absolute rock, he does says he feels helpless at times and he's really tired as he's working full time and does most of the meals in-between me being unwell.

I feel quite venerable saying all this out here so please be gentle ! Just nice to have somewhere to come for a dump (no not that kind ha ha ).

Just wondered how your families have been whilst you through this. Its quite a lonely disease isn't it at times.

Thanks liz x

58 Replies
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Oh M 🥺I wish I had the answers to many of your problems .

For you try the depo again . Like you mine haven’t worked sometimes. I had one in September I though it will be like last time useless.... this time a miracle and I’m still feeling the benefit. You have nothing to loose.

Can you ask your daughters school to help. They can get specially trained councillors. These wonderful people will listen through play , colouring or music etc children don’t even know they are councillors . They do make a difference. We had a child at our school whose sibling was seriously ill and had desperate anxiety issues. Now a different child who has found a way to cope.

Wish there was more I could say. You are right this disease drags our family into it and changes their lives too. Just want to say well done hubby we often forget how much partners take on . X

Thanks so much, her school are really good. I've just messaged my husband about asking the school for help, I wouldnt ever want her to have issues later in life because of this.

Thank you x

I agree with J1707 that some counselling could be really helpful to them. Not just for now, but could really have a lasting impact in their ability to process difficult information and cope. Ask school, or your GP, to start with.

Thank you x

Omg as I have said before it must be loads worse for young parents who have this horrible disease I only have myself to look and worry about you have all this going on my heart go s out to you I got upset reading it if I was a fairy godmother I would grant you and family wishes instead I will send you my love and believe there is hope things will get better big hugs to you all xxx

Awww thank you, im sure things will get better, I don't want my daughter to get affected by this so think will ask her school if they have councillors x

Agree with the above get your daughters school help and maybe on a good day do a special thing whether baking a cake together so she has happy memories too. Or just a walk just depends on the day I know or even reading a book together.

Thank you, I know she would love doing something together , Christmas is a good time to make things together x

Its productive too for her and doing keeps the mind busy from worrying too x

Aww Marion. My heart goes out to you for all you're going through, you have so much on your plate. Your poor little daughter, she sounds a sensitive little soul bless her and she obviously loves you very much. I can't offer any advice about children as I have never had any but agree with the others about asking the school for help.

I would go for the depo, the first one I had was like a magic potion and although the second one did nothing for me, that doesn't mean another one won't work for you and unless you try, you won't know.

I'm sorry to hear that your dad and mother-in-law are ill, all these kind of things mount up and create pressure and that won't help your headaches etc and you probably feel it's coming at you from all sides. I can only say that I wish you all the best with it and hope that the time to your appointment flies by and you can finally get something sorted that works for you. xx

Thank you x

She is a gentle soul, so caring, broke my heart to see her upset this morning.

I'm going to put alot of effort into making happy memories and start doing more things together. Must be alot of things I can do without having to move alot !

Thanks for your help xx

Your second sentence I really understand even though I don't have any kids. xxxx

It must be so hard for you atm with so much going on but I'd definitely agree with everything that's been suggested; most schools have a better awareness of mental health issues these days and some support from an outsider could be just what's needed. I do wonder if, with a bit of planning, you could manage a "creative" session with your girls? They could do all the "heavy lifting" (literally!) and you could just direct them. I have many happy memories of baking sessions with my Mum and often made all the sausage rolls and mince pies for Xmas under her guidance. We used to try out recipes together and these days it should be easy to use ready prepared bits and pieces. She also taught me how to knit (and darn!) as that was what she was interested in but maybe making homemade cards or decorations would be an idea?

Thats so lovely having such great memories, ive got to make a big effort to do this with my girls. I can definitely do things with them doing the heavy stuff .

Thank you x

It's the memories and the fact that she turned me into a half-decent cook 😋🤗

My mother had epilepsy that was never controlled by medication. It was hard as a child. Im trying hard to phrase this right. So please forgive me.

From my own experience I would say be as honest as you can with her. I know as a parent you want to protect her from everything but that left me feeling in the dark and scared. Involve her as much as you can. Can you give her a task that is helping you to give her a sense of control?

I know others have mentioned counselling. Have you thought of young career groups so she can talk to other children. I don't know what her friends group is like but I know I never felt able to talk to my school friends as they wouldn't understand, some were down right cruel.

I really appreciate your help, ive always been very open with her and I thought because I said I will be OK just will take some time I thought she understood; But seeing your mum in pain cant be fun and it's upset her more than I thought.

Shes quite shy when in groups so I think she would hate the group chats but I have just contacted her teacher and explained whats going on and seeing if there is a school Councillor who can help . I really want to help now before it escalates.

Take care and thanks again x

Try not to worry too much. She sounds like a great kid. I'm sure she'll grow up to be a empathic adult which has many advantages in life. X

Oh Liz, I really feel for you. I don't have experience I can help with but J's suggestion could be helpful. Also, I wonder if talking with one of the telephone support volunteers would be a consideration. I'm sure NRAS can pair you with someone who has experienced similar things with their child/children? You'd phone the helpline & they'll arrange it for you 0800 298 7650 Mon-Fri, 9.30am - 4.30pm.There's a book, I think it's by Medikids, a little girl's Mum has Rheumatoid & it's written in simple terms to help explain. I don't know if that's actually what would be helpful but thought I’d mention it. smile.amazon.co.uk/Eloise-M...

I'm sorry the last general steroid injection didn’t help. I’ve had 2 generals, one didn’t do anything & the other I had one wonderful day on. That said I'd still try again if needed. I do wonder though, I’ve talked about this before & I’ve not had chance to ask my Rheumy or SpR, but someone suggested that if I don't respond to Depo Medrone could I have Kenalog. This because I know that works as I’ve had it in specific joints successfully. Maybe it's something you could ask about?

If you need one sending a hug ((x))

Thanks so much, she loves to read but I'm not sure if it would make her feel worse reading this. Difficult isn't it, I might ask her. Amazing someone has written this, there is obviously more help than I thought.

I might ask my consultant about the steroid injection , nothing is straight forward is it ! If it did work it would be wonderful.

I really appreciate you taking the time to reply, given me alot to think about x

I just wanted to say my heart goes out to you Liz. Some really good things already suggested by others and as NMH has mentioned perhaps a call to NRAS helpline they may be able to suggest if there are some resources available or sign post you to people who have experienced the same. Again with Covid and lock down, schools closed, being at home more than usual, then schools opened etc may just have accumulated her worries and somehow it all has to come out, if I have worded this right. Sending you some supportive and warm wishes love Pip xx

Thank you Pip

Yes its been a tough time with covid etc, you're right it's like her worries have accumulated. Glad she's let it out and now we can help her.

Fun weekend of baking and movies I think. Its easy to think of myself when I should be thinking of them.

Take care x

Hi liz

Wow, you’ve really got a load to

Carry. I am genuinely sorry to hear that things are so very tough - for you and your family.

I am a single parent to four girls and like you, my journey has been difficult, with many hospital admissions, numerous surgery and joint replacements. And also like you, as best I can, I keep my struggles hidden so as not to worry the girls.

Even though I do this, the girls are not fooled. They see more than we think and often hear us talking when we think they are not there.

Is does sound like your youngest child is very anxious.

Have you spoken to school? Very often they have counselling/ outside agencies that can offer space for her to talk and be supported in making sense of her situation and her worries/ anxieties.

Alternatively, the GP would be a good option, to talk things through or possibly a referral to CAMHS?

It is maybe worth addressing it now as eventually, it may become to much for her and may impact other areas of her life (learning/ friendships).

Her fears are legitimate and just having a safe space to share and make sense of them may be all that’s needed. Often children don’t want to share their worries with parents, for fear of adding to our load.

I really wish you all the very best- you worrying so much isn’t good for you either - although as parents, we always worry about our children.

Also, keep talking here. There will always be lots of support and kindness for you here x

Thanks so much Marie, 4 children thats lovely 4 times the love ❤

I've chatted to her teacher today who is wonderful, he says she's been totally unaffected in school but he's going to arrange for her to chat with one of the councillors there and he's going to keep a close eye on her.

I think today it all welled up and spilled over, she's always been very gentle and caring so I've just got to be more aware of what I say; we are planning family activities to keep everyone occupied and I'm going to keep talking about my health problems to after shes gone to bed.

Everyone has been so lovely here, I appreciate all your advice.

It must have been difficult for you too with your journey through this condition, but I'm sure like mine your girls are worth it x

That’s good news, and will be a weight off your mind, I’m sure.

It sounds like you’re doing everything possible to support your girls, particularly your younger daughter. They are very lucky girls.

You’re offering the best thing- stability, security, love, and as place for her to talk.

As I said, very lucky girls x

You are too kind, got a bit teary reading that x

Thank you, you take care too

Wishing you and yours all the very best x

Also, just to say, I was diagnosed 6 years ago and the first year was hell on Earth. I failed on 3 DMARDS, steroids literally did not work- oral or injection- and within that year, it was so aggressive I needed to have both hips replaced ( together at the same time) and 13 weeks later, both knees replaced ( together at the same time!)

The game changer for me was the move to biologics.

I had had further replacements since but the condition is better controlled than it was.

Currently I take biologics every week, alongside methotrexate, leflunomide and arcoxia - this seems to have slowed things down.

I had an ankle replacement just at the start of lockdown but I’m back at work and am able to hold down my job as a social worker for a busy local authority.

Not to say I don’t have flares- but with the current cocktail of medications, these are a hundred times more manageable.

It may not feel like it just now - but you will get there. You really will x

You are an very strong person to come through this, really glad your condition is under control .

I think I'm being assessed for biologics so here's hoping x

Fingers crossed x

I’m glad you spoke to her teacher they will be more aware and less likely to miss anything amiss. Hope she gets to see a councillor quickly they are in great demand at the moment. You have a plan and that will take the uncertainty away .. well done x

Thank you x

The class dojo app is really.good for direct quick communication with her teacher and he's put alot of my concerns at bay knowing he will help her.

Its a big learning curve !

So much good advice above. Just want to send hugs for you. 🤗🤗❤🌈

Hug recieved with thanks x

I had a little tear reading your post, i have two daughters, 1 and 4 and some days are so hard. My heart goes out to you, it must be so upsetting knowing your little one is being affected, I’m sorry. I totally agree with regards to affecting the whole family, my husband worries so much, he tries to understand but how can he, as you said it’s a very lonely disease ( I have another condition too and it’s all bewildering!) I sometimes feel completely lost. Sounds like you had some great advice above though and I really hope you feel better soon. It’s tough enough as it is right now! X

It certainly is hard isn't it, if someone had explained to me what this was like before I had it I never would have understood.

I can imagine you have your hands very full with 2 young children too, I didnt have my arthritis when they were very young , you are awesome x

I can cope with things when it's just me but when it comes to my family I find it really hard if they are upset (well I'm sure anyone would feel the same).

Happier days ahead im sure.

Thanks for your reply x You take care

No it’s impossible to make someone understand, I’ve tried many times! I don’t feel awesome but thank you that’s a very kind thing to say. You will definitely feel better once they get your mix of meds right, it does take a bit of trial and error but you will get there! You take care too and I really do hope you start to feel better soon x

Aww Marion such a worry for you but you have done the right thing in being honest with your little ones , I was brought up in the times when kids were seen but not heard and my mum suffered with nerves and other problems but they were never explained to me , now when my two kids were growing up I was over protective I never told them things if I thought they would be upset , I realise now this was the wrong way to be ,they are now grown up and have there own children and they are very open with them and not so long ago my daughter said to me that I should open up more and tell them things and stop trying to protect them from real life and I realise now she is right , I do hope you get your meds sorted soon to get some relief and carry on being such a good mum x....

You're really kind x

We do what think is right though don't we so don't be too hard on yourself x

Thanks for.your reply

I want to reiterate what others have already said about asking school for support. I’m an Early Years Practitioner within an Infant school and I and several of my colleagues are trained/training as Nurture Assistants. Our training is done with Educational Psychologists, and we cover topics such as loss and bereavement and anxiety. As a whole staff we’ve also been trained in ‘Mental Health First Aid’. Try not to dismiss your daughters concerns in an attempt to reassure her, as they are very real to her, but you can support her in rationalising them. Best wishes

EDIT: I’ve just seen that you’ve had a helpful conversation with the class teachers that’s brilliant.

Thank you so much for your reply, her teacher was amazing yesterday, its quite a personal thing opening up to the teacher but its in my daughters best interest.

Sounds like you are an asset to your school, so thankful for people like you.

Many thanks x

Thank you, I’m fortunate to work for a school that prioritises this sort of thing

Its a very lonely disease...too true....I have had it 40 years.

My own two children plus my six grandchildren have all been understanding and supportive from very early ages.....i have always been open about my inconvenience I never in my own mind say its an illness......

I always try to do things myself .

My family accepted it better i think because i accepted it...

I lived my life with it not around it...

Its a part of who I am.....good or bad..

We all have defects some more than others...this was mine......

My older grandchildren say thier Nanas a fighter .....though yes even i get tired of fighting me every day.....Drug intollerant now for over 15 years......

This lockdown has been my thorn...

Or the straw.......and boy have i yelled and sworn with pain......

My body is pretty deformed and my abilities are less and less......but each day is a challenge......

This is my life ...there are thouands worse off than me.........

You take care and enjoy the moments .

Young ones do copy and at this moment in time they will notice more as there minds are not occupied with thier own things.....hopefully as our lives go back to normal your daughter will not focus on your inconvenience....but on the positive things that used to fill children minds......

Very best wishes.....

Sorry to read of your drug intolerance and its consequences, I hope you find some relief in the future, im ever optimistic about new drug discovery.

Yes I want to live with it and not let it dictate to me, whilst I am getting better psychologically with it obviously my children aren't so, but things are going to change.

My nan had RA and didn't ever receive medication for it, she took fynnon and salt and never complained to me, now in my condition I've so much respect for her just like I'm sure your family has for you x

I have been following your story here although I don't often post and feeling such sympathy and empathy.I remember so well when I started my journey 9 years ago , so much to learn and adjust to and the disbelief and then anger that this should happen to me.

I think all the advice you have been given is good, only thing about depo injections is they make you more vulnerable to COVID for a short time

I too have side effects from almost all drugs, currently retrying Methotrexate on a low dose with Cimzia and hoping

Love your girls lots and they will come through, can your husband have a word too?

Very best wishes and don't give up

Really hope methotrexate works for you this time, it is all trial and error but it drags on doesn't it. At least we have hope, if there were no treatments available i would be distraught.

Thanks for your reply, it does feel like a journey, an out of control journey ! I don't know if it would have been any quicker with treatments etc if covid wasn't here or rhematology in general is slow! 😁

I'm still not warming to the idea of the depo injection, think I will wait it out until my hospital appointment, but things change from day to day don't they so 🤷‍♀️

We are quite a close family and my husband does chat to her about things, she's just always had a very protective streak when it comes to me and I think takes alot upon herself to make me better. I'm really cutting back talking about my health infront of her, quite nice to have a break actually, feel like all I ever talk about is hot joints !

You take care and fingers crossed for the new drug combo your trying

It is so hard when they are young to understand what is going on in their minds. You’ve done the right thing speaking to her about things and it’s good that she can talk to you and tell you what’s bothering her, you obviously have a really good relationship. It’s good to hear you’ve spoken to your youngest daughters teacher too, they are so much better trained in mental health issues now and would now how to talk to her if they felt it was necessary to check she’s ok and explore her thoughts and feelings too.

My Son is quite a sensitive soul he’s 12 now and still gets upset seeing me in painand in tears, we often try to protect them as much as we can but sometimes you can’t like you said and that’s for their own good so they understand a bit more too. My Son’s quite big (tall) and strong for his age and you kind of expect him to be a lot older and more mature than his years from his appearance which makes things difficult for others to understand how things really affect him.

I’m glad you’re quite open with your daughters and talk to them about how they are feeling, you sound like you’re doing an amazing job. Posting here to offload has been brave and you’ve got lots of support, understanding and advice which is amazing to see.

When I initially read your post it reminded me of something my Son wrote about me at school when asked to write about family, hobbies and interests etc and he wrote that I don’t really have any hobbies as I have haemorrhoid arthritis (oh the embarrassment, luckily his teacher knew what he meant, it still gives us a giggle a few years on) and it makes life difficult for me. I nearly wet myself reading it when he showed me his school book but I remember feeling awfully sad too that I’m not one of the ‘normal’ parents because of my health problems. You’re right it doesn’t just affect us at all.

Hoping you get a good plan together to help things improve not only for you but your family too, I totally hear you and understand too xx

Thanks so much for your reply, its nice our children have empathy isn't it, I think my daughter has tipped over to worring too much though so got to readdress the balance.

That really made me laugh, haemorrhoid arthritis 😄 Maybe I shouldn't laugh with this condition you never know what will hit ha ha

Joking aside I would have felt the same as you if I had read that, I hate using the word arthritis, im trying to think of a name for it I like but I might just end up calling it Bob or something! It can take over your families life im sure, guess we have to try and not let it.

I really do find it helpful to just dump things out here, unless you've got this I don't think you an really understand. I spoke to a lady on the NRAS website few months ago about how this forum has been such a huge help for me and she said some of the people here who post rtruly helped people get through their toughest days, I totally agree.

Your son sounds fantastic, im sure he will grow up to be well grounded and caring person just like his mum 👍

Ah thank you. I rang NRAS recently and spoke to a lovely lady that really helped me after it was suggested on here to contact them for support. It’s great to have these places where we can talk openly with people who truly understand like you say xx

Well from one Mum to another, I just felt I needed to join this thread to tell you to stop being so hard on yourself. I realise this is easier said than done as the impact my RD has on my kids and my relationship with them is the thing that I hate the most about this disease, but I wanted to say it anyway! It sounds like you are an amazing Mum, and the very fact that you are on here thinking about all these things shows it.

I have an 8 year old boy and 13 year old girl and was diagnosed about 2 and a half years ago. My youngest is exactly how you describe your youngest daughter, sensitive, caring and kind, and incredibly emotionally intelligent. I think you need to see your daughters recent behaviour in the context of the current situation we are in with the COVID pandemic. Many children I know (particularly the deep thinking ones) are struggling at the moment with feelings of anxiety and helplessness, without any of the other issues that your daughter is also dealing with in terms of family illness which obviously makes such things much closer to home. I think the involvement of a school counsellor is absolutely the best idea, it’s often difficult to share our feelings with those closest to us, and also children sometimes ‘hear’ something better from someone they consider to be in a position of authority if that makes sense.

You mention a couple of times about trying not to winge in front of her or show that you are in pain, but I agree with the comments others have made about being honest about how you feel as children tend to pick these things up anyway. My approach has always been to be honest and upfront with my two if I am having a bad day (or a bad week!) but at the same time from the outset I have made sure they knew that this disease could cause me pain and give me problems doing stuff but it wasn’t going to kill me! Maybe a bit blunt, but I learnt from my own experience that young minds can come up with all sorts of things if you don’t give them the facts. My Mum was a manic depressive, and when I was a kid mental health wasn’t something that was talked about. As a young child it was clear as day to me when Mum ‘wasn’t right’ but I think it was much scarier because I didn’t understand it.

You also give yourself a hard time about trying harder to do things with them to make more happy memories. I am sure you are doing this anyway. My inability to take part in some activities with the kids was definitely something which tortured me early after diagnosis, but looking back now I can see that as a family we have adapted. Hubby tends to do the more active stuff with them, whereas I take them places like the cinema or the theatre (when we could!). My eldest daughter and I have become regular concert goers together (seating area obviously!). I play video games with my youngest, even though I am terrible at them, but it makes him happy as he always wins! We do lots of board games and craft stuff too. I can also see that for all the negatives, my illness has had positive impacts on their development too. They are both independent and helpful, and have empathy towards others, as they know that behind closed doors many are dealing with their own struggles.

Anyway, I’ve rambled on for long enough, just wanted to say you are doing an amazing job and it will get easier. I’m sure your daughter will get through this period with a bit of outside help, and your obvious love and support. Big hug xx

It's hard all around isn't it, I think I do talk about stuff alot though so probably do me some good too not to keep on.

Your children sound lovely, we are lucky to have children who care.

The school are being so lovely and I think I'm probably highly sensitive to things as her teacher said yesterday she's absolutely fine in class and has a good friend group; They are going to have a gently chat with her and see if things run a bit deeper.

So in the grand scheme of things you haven't been diagnosed that long with this, hope things have gotten easier. Seems like most people run the same gauntlet of funding their drug, hope you've found yours x

Thanks for the reply, I think your totally right, these times of covid add extra pressure to everyone's life x

I’m glad the school are responding well, keep us posted on how things go won’t you? I’m still not quite there with the drugs I don’t think, but definitely better than I was thanks. 🙂

Hello Liz, I can't add a lot to all the thoughtful replies you got for your post. My heart goes out to you. I will wave my imaginary magic wand every day to make sure something positive will come your way. Look out for it! You and your family are very strong and positive, so you deserve a break. All the best.

Thank you thats really kind. I'm open to positive thoughts for sure x

Oh Marion I know this post was 2 days ago, but I’ve only just read it & it’s heart wrenching to read, it sounds like you have had some wonderful advice & already got the ball rolling, which is great progress. But I just wanted to say what a wonderful mum you are, that’s so clear to see & hence why you have a beautiful caring daughters, your at the helm & doing a fantastic job. I hope you get on the right treatment path for yourself sooner than later, a new year round the corner & hopefully a fresh new start & controlled treatment plan so you can get back to your former self, all the very best I’m sending a big virtual HUG x

You are really kind x

Thank you for your message i really apprecaite it, I don't feel as bad today as when I wrote this post.

Take care x

I’m so sorry for replying to your message so late. It really has touched me. So pleased you have had many supportive messages and you have also been able to get some support in place. I think you are a truly amazing person and clearly a wonderful mum and person in general. I really do hope you hear soon about your treatment going forward. Sending lots of love and gentle hugs. Gail x

Gail thats so kind of you, this forum has been a real blessing for me, such lovely supporting people like yourself.

Hope your depo injection is beginning to work, take care and thanks for your message x

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