The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

Does anyone else worry about money/finances?

Discussion in 'Finances, Work, and Disability' started by Misfit Toy, Aug 1, 2017.

  1. Misfit Toy

    Misfit Toy Senior Member

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    Rarely do people talk about money. It's taboo to bring up worries about it. Many people don't want to admit that it's a real issue.

    I was just diagnosed officially by a cardiologist with POTS. I also have MCAS. All of the medications I am taking costs a fortune. I am going to throw this out there knowing full well I may be looked down at. I am not sure if I could continue on if I was broke, homeless and sick. To me, that is a fate worse than death. To struggle with that added burden when you are already so sick is just too much for me to handle.

    I recently went off of FB due to a woman who friended me showing what her life is like living in a van. She didn't qualify for SSD. She is so sick and she is homeless. We know those people. Many have this illness. No matter where she turns, she can't receive help. FB became so depressing to me with so much sorrow and sadness, I deactivated my account due to the anxiety it was causing. I would watch her videos of her in her van and cry for her and for anyone in this situation and have absolute panic about it. I admittedly couldn't handle it. I would scroll down and then a friend of mine would be in Hawaii after watching a homeless woman. I couldn't take it. Two opposing situations and it's not fair. To see someone have their life so hard followed by someone in Maui...I couldn't deal.

    I have wanted to move to a different less expensive apartment, but I am finding them hard to find where I live. The issue with money is a real issue for me. I own only one thing; my car. Oh, and myself and clothes.

    Work has pretty much ceased. I finally made a necklace after 2 months of not being able to function. I am eating only 9 safe foods right now due to MCAS. I am not so sure I am going to return to work this fall as I am far too sick and my doctor's do not think it's a good idea. Honestly, I don't see how I could.

    I am officially in menopause and I feel like the light has turned off. I am so depressed. I have calmed down the vicious night sweats due to progesterone cream, thank God.

    I am worried incessantly to a crippling degree about finances. I told a friend tonight that I would rather end my life then to go into poverty and be sick. I live outside of a major city. The housing or HUD or any of that doesn't usually have places that are nice around here.

    I can't find others who are dealing with the same fears as most of my friends who are ill live in a country where they are taken care of due to socialized medicine, or most of my friends are married and have husbands, or live with a parent.

    I am single and on my own.

    All of this has me really anxious and obsessed. My therapist tells me to not worry, but honestly she doesn't know much about what you do when you are poor. She has no patients who are broke, or on Medicaid, etc. I really like my therapist, but here was her idea on what I should do if I don't have a car in the future, "Uber it." In which I asked her, "You know Uber isn't free, right?" She doesn't get it.

    Does money trouble anyone else? Does it affect your illness? I am having a hard time getting a grip. I am thinking of relocating at some point to a different state that is less expensive. The problem with that is, the good docs are here. They are right here and when you move someone less expensive, you don't always have the luxury of good medical care.

    It's also a fact even if you have some money, you eventually will run out of it. I am only 46, any money I have will not last me too long and there will be nothing for when I am old. Who knows if Medicaid will even be around in the future in case I needed it. Not with how things are going.
     
    Last edited: Aug 1, 2017
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  2. silky

    silky a gentle soul here to learn

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    YES 110%

    I am so terrified about being alone and broke and sick. How can I take care of myself if I can't work? What man will take care of me?

    Therapists can be so insensitive. I told my therapist that I don't want to be sick for another 40 years. She said "well you may be dead in two or you may kill yourself before then." Yes she actually said that. Made me sick to my stomach.

    Anyway I digress. I absolutely share your fears on this and the scary thing is there's no good answer
     
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  3. valentinelynx

    valentinelynx Senior Member

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    Yes. I am terrified. I'm able to work just enough to pay the bills and, at present, to pay for medical care (and travel to get it) that I'm hoping will make a difference. And relying in emergencies on my father (who is 84). But what if I stop being able to work? You expressed the exact fear very well. I also find the contrast with my colleagues quite depressing: they are all quite well off, own multiple houses, etc. And, yes, worries about money severely affect my well being. I feel trapped living where we are because we can't afford to move back to what feels like home (the SF Bay Area). The Arizona heat is very hard on me, physically, and being trapped indoors for months due to the heat is bad for me mentally. Thanks for bringing up a difficult topic.
     
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  4. Jennifer J

    Jennifer J Senior Member

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    I've been trying not to read the posts lately (even though I miss everyone and staying informed) because I'm trying to stay afloat and trying to turn some things around. Just happened to see yours as I was coming on here to see some notices.

    I relate to much of what you write. Sorry @Misfit Toy you are going through this on top of everything else. I think there are many of us here in the U.S. that are going through this, and people in other countries (some don't have socialized medicine or if they do it doesn't cover things we need with our medical if they even acknowledge our medical).

    I know it's scary. I'm in this asbestos deteriorating building (the laws aren't what they need to be in this situation and it would take more than what I have ability to try to change this any time in the near future), can't find a way out for the past 15 years, and the rent just went up again! It has me freaked out. I can't sustain (is that the right word?) this. I don't have the health to make much happen with anything that needs done. (Still haven't even been able to address the rat situation from January! :()

    More I can say but can't now. I just wanted to say I understand and feel for you and for everyone everywhere that is struggling so much with health, with finances and with survival. All I (we) can do is keep trying to turn something around and hope for the best. As trite as this sounds, often it really is one moment and one day at a time (and try to take as good care of yourself as you can).

    If I come up with some good ideas regarding housing I'll let you know. (Section 8 is quite a sad affair here, and many other places, as far as availability and wait list, and will be as much as I'm paying now once you factor in the cost of utilities.) I do want to start a thread about housing sometime, it's been on my mind heavily for awhile now. I'm thinking of you Misfit Toy and everyone struggling and sending you my love. Wish I could send you more than that!
     
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  5. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    I can totally relate @Misfit Toy I've been worrying about it for the last 20 years and probably will be until i die.

    I've already done the whole broke and homeless thing 10 years ago and was much more ill back then too.

    In the last few years i've managed to save a bit of money which is enough to pay my rent for a year if my bills are absolute minimum. This will buy me much needed time to get my head around the next major crisis and keep a roof over my head while i'm figuring out how to save my life for the 100th time :aghhh:

    My medicines and supplements have always been my major expense. I'm in the UK with free NHS yet nothing I use has ever been available on it apart from Oxynorm.

    I've been in early menopause too since age 32 because of hysterectomy for cancer. The progesterone cream is a godsend for nightsweats!! Again also not available on nhs because my doc doesn't think i need it.

    Yet 3 days without it and my hot flushes return like a demon so i bloody DO need it :mad:

    I'm currently enjoying this short phase in my life where i don't have to choose meds and supps over food and warmth and for the first time in my life don't get mistaken for an ex anorexic so i guess my weight is normal for the first time thanks to being able to buy food that stretches much further than one meal, every other day.

    I think money is a major ongoing terror for a large portion of ME folk. I'm sure that having a small amount of savings instead of less than nothing for the first time has helped my health in the last year or so now that starvation and financial stress aren't knawing on my ankles constantly.

    I know the clock is ticking until i'm back to where i originally was though, so I have to remind myself to enjoy this period of my life and appreciate it because this is the best its ever gonna get for me :) :aghhh: :bang-head:

    I think many don't talk about money because its easier not to think about it too much and too depressing to dwell on for any length of time or they may be like me and feel guilty for the temporary reprieve knowing what others are going through right now :thumbdown:

    Poverty and starvation should be listed as one of the possible symptoms of this illness :(
     
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  6. bombsh3ll

    bombsh3ll Senior Member

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    I can totally relate to this, and it is a real worry for me as well. I am in the UK where we supposedly have the welfare system as a safety net and free healthcare, but in reality I have seen many people fall through the large holes in this net.

    I am lucky to have a husband who is in good health and employed, but we are still reliant on my earnings working two days a week as a GP, which at the moment is very precarious and I am not sure how long I can continue. I have ME & POTS, and have been close to passing out many times at work.

    I also have two young children to provide for, and a mortgage.

    Unfortunately the NHS generally doesn't believe in or treat ME at all, and anyone who finds a doctor who has heard of POTS let alone treats it is jolly lucky. It is also difficult to claim disability benefits for the same reasons when you look normal and all your medical tests come back normal. Even my tilt test was reported as "normal" despite my blood pressure rocketing to 170/110 (hyperadrenergic response) when tilted up. I couldn't see the heart monitor as it was behind me, but a patient who goes pale, is sweating, shaking & presyncopal in any case isn't a normal response.

    I think planning for the possibility of not being able to earn, finding out what help is available and trying to live more simply now is the best approach. Every month that I manage to continue to work, I overpay as much as I can on the mortgage and leave about as much in my account to live on as I would probably get on disability benefit.

    I too fear becoming unable to drive as I would have to pay for taxis for the children to and from school.

    It is a really difficult situation and I feel for everyone struggling with finances as a result of being ill.
     
  7. bombsh3ll

    bombsh3ll Senior Member

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    You should have been eligible for HRT on the NHS since the day of your surgery if you had a surgical menopause aged 32. If you were not offered suitable HRT since that date then you have a cast iron medicolegal case. With regard to treatment now, even if you are past the usual age of menopause and symptomatic, you should still be able to access suitable HRT on the NHS. Ask your GP to refer you to a menopause clinic if they are not happy to prescribe your prog cream. They exist - I used to work in one.
     
  8. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    Thanks for this, i'm 39 now so maybe still don't qualify age wise? But i'll ask anyway
     
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  9. bombsh3ll

    bombsh3ll Senior Member

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    Of course you qualify at 39! When a woman has a surgical menopause (unless for example the ovaries have been removed as part of treatment for hormone responsive breast cancer) they generally receive full ovarian replacement as standard at least into their late 40's. This is really important as replacing physiological hormones prevents osteoporosis. It isn't normal to go through menopause in your 30's. Do seek referral to a specialist for this.
     
  10. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    @bombsh3ll I'll have a word, the last time a few years ago i was only peri menopausal then on the repeat test i was ok so she told me as long as my symptoms are tolerable which they were because it was a month of flushes then okay for a few she didnt want to start treatment earlier than necessary.

    Ever since then i've been using prog cream with no flushes while using and no other symptoms so its something I forget about. Sorry for derailing thread :thumbdown:
     
  11. Wonko

    Wonko Senior Member

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    The other side.
    I'm in the UK and "money problems" are probably what's going to end up killing me.

    Our disability assessment services are, in practice, run by a couple of private companies, officially they are not but the DWP generally just rubber stamps the reports of this company and ignores any other evidence, from social workers, consultants, GPs, carers, friends - all ignored in favour of a report written by a paramedic, physiotherapist etc. (they seem to have difficulty recruiting doctors to write these reports).

    On the basis of such a report my income has been cut by nearly 60%, and it wasn't a lot to start with. I am of course appealing but it looks like I may well lose, as at this point it seems only medical evidence counts for anything, my 24 page letter correcting the assessment report wasn't considered evidence, which would imply any content from myself or the people who help me is also not considered as evidence. Which is a little odd considering that the benefit is supposed to be about how my conditions affect me, not what causes these effects.

    Early next year I am expecting to be called for review of my main disability benefit, unless I strike it lucky then that will also be removed, I only got it last time because I had a sympathetic doctor doing the assessment, I didn't meet any of the primary criteria, at least not to the degree necessary to keep me out of the hands of the local jobcentre clowns, only exceptional circumstances - that any "work related activity" would be damaging to my health.

    So it's very likely that will be 100% of my income gone, including rent.

    I will of course appeal but the very act of preparing an appeal fundamentally undermines one of the tenets of my case, if I can think well enough in a crisis to construct an appeal then obviously I must be able to do it on a routine basis - people just don't understand how cognitive impairment works and the dangers it poses in everyday activities - apparently if can answer to my name within a few attempts, can appear shaved and don't turn up in a wetsuit then I have no cognitive issues at all.

    There is no way I can work, there is no way i could meet the "conditionality" requirements that would be imposed if I was no longer in the support group, so if I was dropped to the work related activity group I would rapidly be sanctioned and be unable to meet the requirements to end the sanction.

    So at the point when the appeals run out I will not hang around, M.E. is bad enough, M.E. homeless with no money - forget it.
     
    Last edited: Aug 1, 2017
  12. notmyself

    notmyself Senior Member

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    In uk at least people are aware that this illness is real and some people get disability benefits there..In my country this disease is not recognized, they called strictly psychological neuroasthenic syndrom , nevrosis, distonia etc and there is no disability for these..i will never get disability for me/cfs in my country..My only chance is to not have this disease..
     
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  13. bombsh3ll

    bombsh3ll Senior Member

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    So sorry you're going through this Wonko. Is there perhaps a charity or disability organisation near you that can help prepare your appeal? I have had patients succeed with this kind of support.
     
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  14. Wonko

    Wonko Senior Member

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    The other side.
    The only organisation near me is the CAB and they are swamped, can only offer limited support, and basically can't do it in time. Given my problem is a "medical report" it seems only medical evidence can overturn it, and given the options available in the UK I have deliberately avoided seeking referral to an M.E. "specialist" centre, although it seems likely even that wouldn't have helped as a lot of them are reported to have a policy of not supplying information to help with benefit matters.

    Similarly with my aspergers, when I was a child it basically didn't exist as a condition, at least not in the north east of england. When I figured out it was a possible diagnosis I was told that there was no way of getting a diagnosis as an adult in my area, I was sent by my GP to a centre dealing with aspergers in children, had a chat, took a couple of tests and was told that in their opinion I did have aspergers but there was no practical help they could give - the DWP doesn't dispute this but at the same time because I went to a normal school, and then went to university (but couldn't function and dropped out without taking any exams, or even really leaving my room), imply that it can't have any impact on me (and due to the cognitive impairment caused by M.E. I can no longer compensate for my aspergers anywhere near as well as I could over 30 years ago)

    Similarly with cognitive impairment, I was diagnosed several years ago by a consultant, who came to my home to do so, after testing that mucked me up seriously for a couple of weeks ( the testing didn't last more than a couple of hours). A year or so later I was offered another set of testing to see if things had changed which I declined because it would simply muck me up and gain nothing. This apparently means I had no medical follow up so I have no medical evidence for this condition.

    At the disability assessment no mental state exam was performed, despite them being given the medical report from one of their own doctors, and this being one of the tenets of, my successful ESA claim only 18 months before, which stated that neither my aspergers or my cognitive impairment was likely to ever improve. Instead in any sections that are influenced by either my aspergers or cognitive impairment she says she performed an informal mental state exam, which basically involves, was I dressed correctly, was I presentable, and did I answer questions if they were repeated enough, whilst not mentioning that things had to be repeated, clarified etc. - in fact stating that I had no issues.

    So...I have zero medical evidence and need to overturn a "medical" report that requires medical evidence to overturn it, I'm going to try but........

    Life hasn't been great for the last 28 years, in the last 10 it's been bad enough so that I've spent a fair amount of time wondering why I bother, it's only because continuing is less work, on a moment to moment basis, than not that I'm still here. Don't get me wrong, it's had it's moments, but not enough, the time comes when any rational person thinks why I am doing this, what, even if I win, am I fighting for, more of the same, on a gradually declining level of functionality, increasing reliance on painkillers that a lot of the time don't. I don't have any immediate family, the one friend who has stuck by me through this is unlikely to last the year,

    I'm 51, with aspergers and no useful life experience or skills, I'm never going to have a partner/family, never going to have a career etc. This is as good as it's ever going to be. Even if everything goes perfectly it's still all downhill from here. Even if they came up with a cure for M.E. tomorrow by the time the NHS gets around to things, it'll be far too late for me.

    It took me a couple of years but I no longer have any negative emotional response to such thoughts, life is what it is, if it gets worse beyond a level that I feel inclined to put up with, then I'm exiting, taking my ball, going home. The most obvious triggers are further degradation of my nervous system (not so much the pain, the random sensations, the control issues etc.), significant decrease in cognitive function, or financial pressures - ATM financial pressure is where my money is as the most likely trigger.
     
    Last edited: Aug 1, 2017
  15. AniSara

    AniSara

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    Dear Misfit Toy,

    I am a dual citizen US/UK and have had to look into moving back to the US because of drastic benefits cuts here in the UK. Section 8 housing is difficult to find, even if you do qualify for disability. However there are community-based mixed-income housing complexes that allocate housing for low-income people independent of section 8. One of these is Westgate Apartments in Brattleboro, VT:

    50 Westgate Dr
    Brattleboro, VT - 05301
    603-641-2163

    Even so,I worry about the collapse of the health system in the US, so I have also looked into moving to India, Mexico, Easter Europe, you name it, as I don't see how I'm going to survive financially in the long term. There are various websites where you can compare cost of living among US states and between different countries, such as the website Expatistan.

    Of course, most days, I'm too ill to even get down the stairs, so I can't really imagine moving. That's when the suicidal thoughts creep up on me. Lucky I'm too ill at those points to act on them! Your therapist sounds clueless when it comes to poverty. Maybe a social worker could advise you on places to turn to for help?

    Please hang in there; as the saying goes, "Don't quit before the miracle..."

    Good luck!

    Ani
     
  16. Misfit Toy

    Misfit Toy Senior Member

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    This is where I am. I will not continue if money is the issue. I have been sick for 28 years also. Enough. On my end, the depression from it is crippling me. I am thinking often of how I will end my life when the time comes that I am broke.

    It saddens me to see that in the UK people have to worry about not getting insurance or money for rent, etc. Disability. I know the UK is pretty bad with ME so this makes sense.

    I am sorry for this.
     
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  17. Dainty

    Dainty Senior Member

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    Yes, finances were a huge worry of mine. One technique I've found helpful is designating one day a week when I do alllll the financial stuff. I check in with where my finances are at, and how I'm doing with spending. I create a plan for the next week, usually something like "crap I need to try not to spend ANYTHING" or "okay, I can spend on a few things this week without a problem". I look at all my accounts, I make payments as necessary, I scour craigslist for job possibilities, etc.

    But only one day a week. I found that when I gave myself that one day, then the rest of the week I could focus on other things. And whenever it worried me, I'd tell myself that I'd sort it out on Monday (or whenever the day was). It was difficult at first but it really helped a lot. I no longer spent huge portions of almost every day obsessing over the numbers.

    Prior to about 6 weeks ago, I lived in vehicles on the streets for over 3 years. Was it very difficult? Yes. Was it very stressful? Yes. Was my survival in jeopardy? Yes, yes, yes. But you know what? Living in a vehicle gave me the freedom to attend social events and doctor visits I couldn't physically get to otherwise on my own, by parking outside the night before. I could go back and take a nap right after, resting until I was well enough to drive again. Living in a vehicle made it possible for me to be independent enough to make friendships, have a dating life, and meet the love of my life. He moved into the minivan with me and we then lived in it together! Yeah parts of it sucked, but other parts were amazing. Guess who I know is gonna be with me through the thick and thin, ya know?

    I was broke, sick, and in a vehicle on the streets. And it sucked. But I came out of it. Even though we were both in a major car accident and my partner lost his job, and we had injuries on top of everything else, sharing one vehicle between us 'cause his was totaled. My fiance eventually got a really nice RV that we just moved into at an RV park with full hookups, after he got a job 2 months ago, and I found a part-time job I can do. My SSI has stopped because I'm making too much money. For the first time in over a decade, I'm experiencing what stability feels like.

    We plan to get married next summer.

    For me, living in a vehicle was my escape from an emotionally unsafe living situation, and it was a godsend. It was the start of me being able to live life independently, and make choices about how to use my energy that would not be judged. And I was amazed that my body continued to heal, even under such adversity.

    I know I can't say that just because it got better for me, it will get better for you. I wish I could. I just wanted to give you a story of homelessness that had a happy ending, so you knew they were out there. They exist. If I had never lived in a vehicle, I feel like 75% of the happiest experiences of my life so far would never have happened. And now, I'm finally improved enough to achieve stability.

    Wishing us all the best. <3
     
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  18. Misfit Toy

    Misfit Toy Senior Member

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    @Dainty -I can even imagine dating while living in a vehicle. As in a car? Here you would die from heat. Also, how does one shower? The idea of dating with no showering...for me would never work. I am glad it has worked for you and that life has gotten better. That's great news.
     
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  19. Dainty

    Dainty Senior Member

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    The first vehicle I lived in was a 2-door car, yes. Then I was in a full size van, then I was in an SUV, then I was in a minivan, which has worked out the best for me.

    Before living in vehicles showers were essential to relaxing for me. I would take 3+ a day, just to de-stress. I didn't miss them as much as I expected to, and I know a lot of people who have said the same. There are usually places you can take showers, such as truck stops, homeless shelters, or campgrounds. It really depends on your area.

    Heat is definitely a problem in the summertime. Parking in the shade helps a lot, parking anywhere you can open the windows and doors fully makes a huge difference. I have a marine grade refrigerator and house battery in my van, as well as a powerful fan set up. Worst case scenario I keep a spray bottle of water on hand, and that combined with the fan and drinking/eating cold stuff makes a big difference.

    There are forums where people problem-solve a lot of this stuff, and share what solutions have worked for them. That's where I got a lot of my information starting out, and realized how doable it could be.
     
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  20. Misfit Toy

    Misfit Toy Senior Member

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    Funny. I love Brattleboro Vermont. My extended family is up there. Freezing though. Thank you for the tip and a lot of ugh to the whole situation. I, like you, am too sick to act on ending my life. Too sick to figure it out.
     
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