My fiancee has left me because of arthritis.

hetfield Member Posts: 4
edited 25. Jul 2016, 03:09 in Living with Arthritis archive
Evening all,

Long time lurker, first time poster here. I'm 30 years old and i was diagnosed with psoriatic arthritis just over 5 years ago but have probably been suffering for much longer before diagnosis. Since my initial diagnosis i have gotten worse and worse with barely any relief from medication and treatment, which i would class as non effective DMARD therapy. I also suffer with chronic, almost debilitating IBS. This has seemed to get worse in the same pattern as the arthritis. My daily life is a struggle and i'm in some degree of pain everyday. If its not bones or joints giving me trouble, its the cramping and tummy ache from IBS. Some days it's a double whammy. Most days i am unbelievably fatigued and the most tired I've ever felt in my life. I'm completely drained physically and emotionally.

Just around the time of diagnosis i met a wonderful girl who brought a great deal of light into my life. When we met i explained my condition, which at the time wasn't too bad but still hard work. She has watched me get worse and worse and witnessed the depression, the frustration and the struggle i have. Although she has been there for me i feel she never truly understood just how much distress these conditions have put me in. I've had to give up on things i love doing as it is too painful on my hands and joints. I've had to give up on my music and playing because of the pain. Something i dearly loved and enjoyed.

We were engaged to marry later this year but i regret to say and admit that because of this illness, she has left me. She forced me into a position where i had to absolutely guarantee i will give her a baby after we get married, no exceptions. I always thought we would have a child as i love her so much and with her everything felt right and we were happy. However, since we met my condition has nosedived and due to how difficult just going to work and trying to live like a normal person is, i just do not feel i could cope supporting and raising a child in my current and worsening condition. I just couldn't do it. I see how much hard work it is with friends and family that have had babies and they're healthy as well. I'm on my knees and feel like death most of the week. I'm struggling so much and she doesn't understand at all, even after 5 years she knows very little about what arthritis does to a person. She still thinks i can be one can be cured of this.

I have had so many people criticise my decision (even though it's non of their business). So many people see me as a bad guy and gone as far to say i will die a lonely old man. It's absolutely crushing. I'm at the lowest point in my life and nothing to look forward to and i get venom like this thrown at me. I know everyone judges me. Breakups are hard on anyone but it's even more depressing knowing that i'm now no longer in control. The arthritis is making the decisions and i don't feel strong enough to stop it. Some people must think i can just turn it off or something and just pull myself together. I've watched my mother deteriorate with the same condition and it scares the absolute hell out of me to think of just how unstoppable this can be. 5 years on treatment and i'm nowhere near getting 'better' or feeling ok.

So, now the love of my life has walked out on me and i have only my pain and sadness to keep me company. I'm so angry and frustrated that parts of my life are being destroyed piece by piece and i'm am powerless because of this ****, life wrecking disease. I don't even know where to start going on with my life. With things like this happening i question the point of it all. The thought of meeting anyone else and having to explain all this over again and hoping someone understands has me convinced i might as well just be alone the rest of my life to avoiding running into a similar situation. I doubt anyone out there other than other sufferers would accept or understand my pain :(


  • moderator
    moderator Moderator Posts: 3,640
    edited 30. Nov -1, 00:00
    Welcome to Arthritis Care Forums hetfield
    I am sorry to hear you are having such a hard time with your psoriatic arthritis. As mods we are here to help with any problems you may have on the message boards.

    There are lots of lovely people here with a wide range of experiences with arthritis and the problems of living with the condition.
    I look forward to seeing you posting on the boards.

    Best wishes

    Mod John
  • stickywicket
    stickywicket Member Posts: 26,708
    edited 30. Nov -1, 00:00
    Hetfield, we do understand. We all know how it ravages lives, and threatens to diminish us at every turn. Mine is R .A. I've had it since I was 15 and I'm now 70.

    You are having, and have had, a dreadful time of it but, please believe me, things can get better. I don't criticise or condemn you for telling your fiancee you don't see how you can raise a child as you are. I applaud you for the foresight.

    Your PsA is clearly not under control . I wonder which medications you've tried and what your rheumatologist's view is. Has he / she offered biologics?

    I want you to believe that things can be much better than this. There are people out there who will love you for yourself not condemn you for your disease. I found one and many others have too.

    I would urge you to start to turn your life round by ringing our lovely Helpline people. They will understand and listen and help you to find a way forward.

    Well done on writing all this down. That must have been a difficult thing to do. But you now have people who really do understand where you're coming from and will empathise not criticise. Go for it.
  • theresak
    theresak Member Posts: 1,998
    edited 30. Nov -1, 00:00
    Hello Hetfield - I'm so very sorry to read what you are going through. You are right when you say only fellow sufferers can truly understand just how much your illness is taking from you, and the impact it has on your life. I can well understand your reasons for not wanting a child - there is so much for you to deal with at present.

    I have RA, and , when diagnosed, wondered if there would ever be light at the end of my tunnel - but you are having to cope with two complex and debilitating conditions. I'm not sure how well you get on with your GP - mine kept me sane in the first awful 18 months when the RA was rampant. He/she might be able to give you some temporary respite with a course of anti-depressants or some counselling, where you can pour out your feelings to someone who is completely objective & non- judgemental.

    Is there a Specialist Nurse on your rheumy team? You clearly need some medication to bring your PsA under control - there are more drugs out there.

    Please do keep posting so we can help & support you in this difficult time.
  • mig
    mig Member Posts: 7,152
    edited 30. Nov -1, 00:00
    Id like to say something helpful but don't know where to start so I'm sending some hugs (((()))) and know that I will be thinking of you. Mig
  • bubbadog
    bubbadog Member Posts: 5,544
    edited 30. Nov -1, 00:00
    Hi Hetfield, I'm so sorry you are going through such a terrible time, but now you are here with people who know what you are going through. I think the first step is to call the helpline, I did this when I first found this site and pretty much laid myself bare to them. They pointed me in the direction they best felt I needed to go and I thank them for doing that as I'm in a better place now and not as depressed as I was mainly thank you to these guys and the advice the helpline gave me. The advice the web manager gave was a good starting block and I'm sure things will starting go up from there.
    You did the right thing coming to us, we are a big family here and will do what we can to support you and point you in the best direction. Take care and welcome to Arthritis Care forum family. :)
  • LignumVitae
    LignumVitae Member Posts: 1,972
    edited 30. Nov -1, 00:00
    Hetfield, what a heart wrenching post. Although things go from bad to worse, they can also go from better to good and they will do for you in time. This too shall pass.

    You do have control, you do have choices and you will have better times than this. I'm 36 and at 31 split up with a partner about four weeks into giving up meds to try and get pregnant. It wasn't an easy time but looking back it was a lucky escape! His relationship with my arthritis and I was unhealthy. Like you I was losing control of my situation but I rebuilt myself starting by taking control of my arthritis and my relationship with it. Talk to your rheumatology team asap about your lack of control over your arthritis. Talk to whoever looks after you for IBS about your lack of control over your condition. Those two steps will start to give you control of you and your direction. Don't talk to the people who are pressuring you be they family or friends. Not don't talk forever but do give yourself some time and space to concentrate on how you feel and not how others expect you to feel or think they would feel. Grieve, scream, cry, shout do whatever it takes to give yourself a metaphorical deep breath and a good break from the pressure. Then do something nice for yourself - music, a film, anything that will give you another bit of a break. Do come back here and talk to us, please. Whilst we aren't in your unique situation there will be few of us on here who haven't had arthritis affect our family life or our relationships with those we love. We will offer you support and any help we can. Sending you lots of hope for calmer waters to the way, after my break up and rebuilding I did find a way forward, my arthritis is sort of controlled with anti-tnfs and dmards combined, I'm married and I have a family. At my darkest moments I assumed I would have a future as a mad cat lady, whilst I do have a mad cat she's more my husband's buddy than mine.
  • barbara12
    barbara12 Member Posts: 21,258
    edited 30. Nov -1, 00:00
    Hello Hetfield
    I am so sorry to read how much pain you are in and how down its has made you,and effected your relationship.. you really did need to get all that out and hopefully it will make you feel a little better..I see that the others have given you lots of advice.I just want to wish you well for the future..
  • hetfield
    hetfield Member Posts: 4
    edited 30. Nov -1, 00:00
    Thank you all for the kind words, it feels so reassuring knowing there are people out there that understand what i'm going through. God, i miss the normal 'days'.

    The care i have received hasn't been very successful over the years. I was initially put on methotrexate (i think everyone starts here) which at first had no negative effects until a few weeks/months passed and then it would end up putting me in a foul mood and i couldn't concentrate after taking it. I felt like i was living through a lens. It was horrible.

    I have tried a series of pills that would end up giving me negative side effects like headaches, nausea, sleepiness, all kinds of things. I have settled well with azathioprine and have increased the dosage a few times with no side effects at all. While it has helped pain in my wrists (at one point i couldn't lean on my hands or push doors open without a jolt of pain) it still hasn't relieved my overall stiffness and aching. My fingers constantly feel like someone has stamped on them. It hurts to even type this on the keyboard. Do the meds ever make you pain free completely?

    I think on my next visit my dosage will be increased, that seems to be the default response from the doctor during appointments as i've seen from my mum and from my experience. It's a shame i'm not getting the results i thought i would get on the meds. I hate having to swap and change as it can make me feel ill for weeks which is something i don't need right now.

    I have never been offered biologics or even had them discussed as i think they're seen as too 'expensive'. As with all things there is a price on my well being. I think i'm just going to have to lay it on during the next appointment and just say exactly what i've said here. I'm just tired of all the back and forth and all the faff of trying new meds, experimenting, going for blood test after blood test. Then after a few weeks or months the process starts again with something else if they don't suit me. Also, not being able to drink is really, really crappy!

    Everything just really, really sucks and dealing with all this alone is draining any kind of strength i have left in the barrel. I just wish she didn't give up on me. I thought that love would conquer all, in sickness and in health.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I can hear your distress and I don't know what to say. Princess D reckoned there were three in her marriage but at least she was fortunate that the extra presence was human: I have two partners in my life, the one I married and the uninvited one (psoriatic arthritis) which quietly arrived just before we married in 1997.

    'Love is not love where it alteration finds' - I think that's how W Shakespeare put it and he was (and is) right. There is no doubt that my arthritis affects me physically but my essential self is still there, as it is with you. Her frailties and emotional weakness is not your fault but I do understand how this troubles you.

    I'm having a rough day so won't say more but please stay in touch with us, you are talking to the initiated and we do understand the emotional ramifications of being arthritic. I wish you well. DD
  • rayray
    rayray Member Posts: 115
    edited 30. Nov -1, 00:00
    Thinking about you and I hope that something can be done to help. As well as contacting the Helpline here I wonder if a visit to your GP to have a chat about your treatment would help. They may be able to send a letter to your consultant so that they can emphasise how difficult life is and the need to really try and sort your meds out.

    Sending lots of hugs.
  • GraceB
    GraceB Member Posts: 1,595
    edited 30. Nov -1, 00:00
    Welcome to the Forum. Sorry to read your post and what's happened to you. As a "long time lurker" you may well have seen the depth of support I've had from the Forum members here since February. I honestly couldn't have got through things when my partner died in February without the Forum and, to be honest, I still rely on my 'Forum family' a tremendous amount for that support.

    Use the Forum to offload. Tell us what you are going through and we'll have an inkling as we too, are living "under the cosh of arthritis". I have OA (osteo arthritis) so can't comment re meds for RA. What I can say is that I am 51, I've had an OA diagnosis since I was 39. Some of my friends still don't always understand why I can't join in with everything whereas others are brilliant. I've resorted in the past to getting some people around me to read 'The Spoon Theory' and "There's a Gorilla in the House". Each of these have helped my friends to understand.

    Take care of yourself.
  • stickywicket
    stickywicket Member Posts: 26,708
    edited 30. Nov -1, 00:00
    hetfield wrote:
    Do the meds ever make you pain free completely?

    No. Not in my experience. The only time I've been pain-free since I got arthritis was during my first pregnancy. (It can happen.) Now I reckon it's not a good thing to pursue as it just means more and more meds and more and more potential side-effects. I know my pain tolerance levels and only seek help when I've been outside them for some time.

    I think yours must be an unusual side-effect of meth. I find the RA itself can 'end up putting me in a foul mood and i couldn't concentrate' but meth only makes me, sometimes, very tired next day.

    Does your rheumatologist ever tell you what your most recent blood tests indicate? I ask because I don't necessarily see the DMARDS as meds that control the pain. If the bloods are good and disease activity low you should be in much less pain than otherwise but, for most of us, it's still there.

    Biologics are expensive and most consultants will not offer them until a patient has failed on three DMARDS. However, biosimilars are now available (ie the original meds are out of patent so can be copied) which should be cheaper. If your regular blood tests are good, though, there'll be no point in offering them. You'll just need to see your GP for pain relief.

    Alcohol? I use both meth and wine but that's following many years of meth, I'm very regular with my blood tests and my ALT levels are always wonderfully lowl. And, of course, I was dry for ages when I started meth. And I hardly binge drink - one glass per evening, more if with friends and, hopefully, dry meth days.

    I'm sorry about your fiancee. Arthritis really does affect everyone it touches, albeit differently. She couldn't hack it. You don't have a choice. But we are here to support and empathise.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, how are things with you today? In my experience the only thing that renders me pain-free is general anaesthetic but alas I'm not awake to enjoy it. I take four 30/500 cocodamol per day, that is enough to dull the sharper edges so I can get on with things and leaves me room for manoeuvre if pain increases. Males are generally more sensitive to pain than females which makes sense if you think about it. DD
  • Slosh
    Slosh Member Posts: 3,194
    edited 30. Nov -1, 00:00
    Hi, I can't offer anything else in terms of treatment to what you have already been given but I can offer empathy in regards to the breakdown of your relationship.

    I met my second husband 10 years ago and we married 4 years later and we have been married for 6 years. I was healthy when we married but 3 years ago what started as a painful neck was diagnosed as cervical spondylosis, I had to have surgery on my neck which did not go as welllas planned and although I am now at the threshold for further surgery at present this is not being considered as it is complex and didn't work out that well before. I also have another problem which means I have significant mobility difficulties (I use crutches or a rollator). Put together I am on high doses of meds to keep the pain bearable (most of the time), have various pieces of equipment at home, suffer from fatigue and now only work part time. Everything seems to have changed so much.

    Unfortunately my husband was not able to cope, at first he tried to minimise what was going on, said it was worse for him as he had to see me suffer, and said I was lazy when resting.
    As things went on it became clear that even though I tried talking to him, gave him leaflets etc things were not getting better. He stopped hugging me, and finding reasons to stay away with his friends ( he is from Pakistan although I am white British ), and so had always spent a day or two a week staying with friends from his community which I understood. Our attitudes towards my disability were very different, I was/am trying to accept my limitations where I can't find a way to adapt activities to them, wanting to continue with work etc where he thought I should be sitting at home, resigned to things and be grateful for him doing the house work.

    There were also a number of specific things he said or did which were very hurtful but where he couldn't understand why I was upset.

    It got to the point last autumn where he was only coming home once a fortnight "to sit with me" as he so delightfully put it, and any attempt I made to explain things to him were met with comments such as "I understand all about your condition " . I became depressed and stressed and realised that trying to mend things plus try to meet his emotional needs was just too much for me. After lots of tears and conversations with my close friends and daughter in January I asked him to move out. It was hard, according to him everything was my fault, but in the end he agreed. I do miss him, feel angry that Arthritis has taken something else from me, but overall I know I am better off without him as his attitude was not just unhelpful but was also damaging to my mental health and emotional well being.

    I have gone into some detail not to bore you but to show that you are not alone in this. Over the past three years some friends have dropped me and my relationship with my sister has also become strained. BUT, I have good friends who make me feel good and who are there if I need them, great emotional support from my daughter and grandchildren and have made new friends.

    You are younger than me so there is every chance that at some time in the future you will find a partner who loves and accepts you warts and all even though it may not feel like it now. But take your time and first be kind to yourself, take the advice others have offered and I would suggest having some counselling, I had some last year to discuss my feelings about becoming disabled and it really helped.

    Things are understandably feeling bleak at present, but just take things one day at a time and give your emotions time to heal.

    Take care xxx
  • hetfield
    hetfield Member Posts: 4
    edited 30. Nov -1, 00:00
    Thank you for empathising and sharing your story, slosh. I don't know what is more frustrating, getting people to understand or the road of pain we must travel.

    This last week i've had my ups and downs. One night i had a bit of a meltdown when i was cooking dinner for myself. I had music on and focused on this one particular song which really struck a chord with me :( It ruined my entire night but that was because of my emotions more than anything.

    The days following were better as i have spent a lot of time with family which is always fun and they give me so much support. But now im on another low. I had lunch with a friend and tried to explain things to her and what's going on with me. I might as well have spoken to a brick wall as like my ex, there was just no understanding the destructive characteristics of this disease.

    Any girl i've tried to talk with has always taken my ex's side. It's as though my viewpoint and issues are of no importance. Having a child is the ultimate goal in life and i MUST conform. I hate it. Anyway, i've been knocked down a few pegs. I think i should just give up on relationships and become a monk or something. If i can't even get friend's to offer a little sympathy then there is no chance a stranger is going to understand.

    I've not heard from my ex and don't expect to . I'm so angry with her that i just see red when she pops into my mind. Deep down i hate her for doing this to me.

    Here's praying for a better day tomorrow.
  • Ladybrown
    Ladybrown Member Posts: 130
    edited 30. Nov -1, 00:00
    Hello and welcome. I am so sorry to hear of your situation and am sending you all of my support. Like you, I took the difficult decision that having children was not going to be an option. It's not an easy decision and people do tend to ask about it which I find even worse. I am 40 and have OA in my knees, so it's a little different but I haven't been pain-dullers free since I met my husband at 25 so I can't in all conscience consider a pregnancy. I'd rather be a brilliant aunt than a miserable mum and my family have accepted that now. I tend to come and go from here depending on how exhausted I am from work (teaching, so usually here in the Hols) which is why I am replying now.

    Many people seem to find it hard to understand that a family is not possible for all of us, but it's not everyone. I have been lucky in that I met my husband when I didn't really understand the disease that I have, but that he has stood by me and cares for me as much I need him to. That doesn't mean it hasn't been difficult - we have stormy times when one of us is finding it hard to cope but we work through. I'd also say that I have a number of friends who don't want children, so there are women who will understand, and appreciate your decision. I for one have no intention of passing on my malformed knees!

    In terms of coping, I'd echo the comments about diet etc - smile and say thanks but don't sweat it. I've lost weight which helped hugely (and gave me some control which was brilliant), I had counselling and now remember to play music in the house all the time - sometimes it's good to have a sob but also the good stuff, music which makes me grin. Take the meds and don't be afraid to go back and ask questions about it all

    It's a hard road we are on, and places like this forum are invaluable. Grieve for your relationship and grieve for your health - there will always be someone here to support you and I urge you to post and chat when you need it. There is a life with arthritis - it may not be what we'd hoped but we do adapt and there is not one 'correct' way to live your life
    Take care
  • Rach1972
    Rach1972 Member Posts: 10
    edited 30. Nov -1, 00:00
    Hi, I too have been a long term lurker and have found this forum a huge support in gaining knowledge of my RA.

    I am sorry you have been through and are suffering so much. I was diagnosed with RA at 37 and was in a long term relationship. My partner did not understand my condition or how it effected me and ended up cheating on me. At the same time I also had a very unsympathetic manager and I lost my job. In the space of 6 weeks I lost my relationship, job and found myself homeless.

    But, 2 years later I am back on my feet, working part-time, have a nice little flat and I am managing to support myself. My RA after six years of not responding to various drugs is now finally starting to respond on a combo of mtx, leflunomide and abatacept. I just wanted to share this with you as although everything may seem so daunting at the moment it can and will get better. I will not lie, the last two years have not been a picnic but I have some wonderful friends who I will be eternally grateful for. I admit I am very cautious of becoming involved with anyone else but to be honest I am quite happy as I am for now.

    Please speak to your rheumy team and GP and make them fully aware of how you are feeling and how your condition is affecting your daily life. I really do hope things start to improve for you soon.
  • moderator
    moderator Moderator Posts: 3,640
    edited 30. Nov -1, 00:00
    Hi Rach1972,

    Lovely to see you posting, I think it's quite common to have a look and listen to a forum before diving in. I'm glad you have found a way forward, good luck with the job, meds and everything! It's heartwarming to hear a story with a good outcome.

    Take care
    Mod Yvonne x
  • stickywicket
    stickywicket Member Posts: 26,708
    edited 30. Nov -1, 00:00
    What a lovely first post, rach1972. I do hope 'hetfield' sees it and is encouraged by it.

    Not everyone can live with a chronic disease. I guess it's easier for us who have them as we don't have to deal with the element of choice. Even so, my gut feeling is that anyone who loses a partner because of it is better off without them.

    You have turned your life round amazingly well. I'm sure finding the right meds for you has helped enormously but you still had to get your positive head on and determine to get on with things. Well done you!
  • Slosh
    Slosh Member Posts: 3,194
    edited 30. Nov -1, 00:00
    Sticky, you are right. We have no choice but to live with what life has given us, and until we are put into cetain situations we don't know how we would cope. The other side of this is that sometimes we don't really know our partner until we are tested by something like this.
    My situation was complicated by differences in cultural attitudes towards living with a disability and the fact my ex had seen his Father die as a result of Parkinson's disease.

    It was a hard, and scary decision to make to ask him to leave but 6 months on I know that for me it was the right one, and longer term the right one for him. Although he may not be able to get his right to remain in the UK agreed now and I think that even though the marriage was clearly over, (seeing him for 4 hrs a fortnight is not a marriage in my eyes ) this was why he tried to convince me otherwise.
  • WyleECoyote
    WyleECoyote Member Posts: 38
    edited 30. Nov -1, 00:00
    That is just heartbreaking. I've had arthritis for twenty years and I've been married during that period. I'm a highly motivated woman who is married to a highly motivated man, and I empathise with you. There have been times when I have wondered what it must be like for my husband to have to deal with the fact that I am useless in the mornings due to lack of sleep and hangover from the previous night's pain medication, the fact that I can't walk far enough to see museums when we are on holiday, and the fact that day two of any holiday is usually spent in the hotel with me in bed recovering from the day before when I have refused to limit activities to half an hour walking a day.

    Sometimes I wondered if he would not have been better off with someone who wasn't semi-crippled all the time. But he's the one for me and I'm the one for him. So I put up with his negative and he puts up with mine, and we try to be as supportive to each other as we can and we still have a good life. Would it be better without all this pain? Hell yes. But it's still good.

    You did the right thing telling her what you were capable of. That was a selfless act. She did what she thought was the right thing for her. Far better than staying and watching your love whither out of resentment. I haven't experienced it but many women literally ache to be mothers. If that was her lot in life, she has a paid a price, just as you have. I'm sorry for both of you and hope you both find a person whose needs align with your own. It's likely to happen from what I've seen.

    I hope things look up for you in regards to your condition. Sometimes things get worse before they get better. Don't give up and there is a path through life for all of us in this situation. One day at a time.
  • b2syo
    b2syo Member Posts: 18
    edited 30. Nov -1, 00:00
    Hello Hetfield,
    Thank you for your posts, I hope it was cathartic to let it out. I also have rheumatoid arthritis and IBS, what a jackpot we got! I also have friends who don't understand how I've changed since the RA began. Unfortunately some people will just never get it. Fortunately for every one person who can't hack it there are dozens more who can. I know this might sound a bit trite now, (believe me when I'm housebound and only rise from the sofa like a bad stop motion animation to "run" to the toilet I hardly feel like miss popular) you will meet someone else. There are 7 billion people in the world, statistically they can't all be bad! I sincerely hope that your condition improves and in the mean time know that you are not alone. The helpline is always there to talk to.
  • Wivenswold
    Wivenswold Member Posts: 10
    edited 30. Nov -1, 00:00
    Hetfield, I think the best advice I ever had was that "If there's someone out there worth having, she'll find you".

    What a horrible situation for you. I'm more angry with your partner to be honest, you've done nothing wrong. I lost a partner years ago, long before I got RA, simply because I refused to give in to her demands for a baby. In my mind it's the biggest commitment you can make in life and both sides have to be 100% for becoming parents.

    A lot of men I know felt pressured into becoming dads, did it then regretted it.

    As for your ex, consider this a bullet dodged. Could you have spent your life with someone who puts her needs before yours? That would be a very lonely way to live.

    If you want a relationship then you will find happiness, if you don't, being single is perfectly normal. There's no hurry, you only get one crack at this life business, don't waste it in bad relationships.

    Peace and love.

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