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Diabetes has ruined my life

Discussion in 'Type 1 Diabetes' started by ExtremelyW0rried, Dec 29, 2017.

  1. PaulAshby

    PaulAshby Type 1 · Well-Known Member

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    Sounds like it's controlling you when it should be the other way round, Ask your diabetes specialist to give you a bag of the old syringes and a bottle of whatever insulins you're on and have those as a back up for your pump going wrong but it's the same old
    advice I'm telling you here, Do Your Blood Glucose Tests religiously, yes it's a pain but your life will be better when you take the
    diabetes monster and put a big fat lead around its neck and control It and take charge of the rest of your life, it is a pain but you Can and Will do it.
     
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  2. Miso89

    Miso89 Type 1 · Member

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    Hey Contralto,

    Not to worry on different extremes of exercises, my point wasnt to shine on the extremes im doing (lets be honest, who cares haha) more so was just to shed light that we must continue to kick t1 in the butt. Do your best with exercise, whether thats a marathon or a 30m walk everyday its all in the effort for your health and that is already a great cause! There are many studies going around with different foods that help beta-cell regeneration, I became so obsessed with that as well too I figured eating all of them would do the trick. Taking things slower and letting my body benefit from them more so then jamming them all in at once. Patience is something that im growing to become better at as its been a struggle of mine ... well since Ive come to this world lol!. Extremes are also not a good way to go about things, I did a 10 day fast with just water and coffee. Though the benefits of fasting are documented it alone is not the cure for t1. I however do believe intermittent fasting is how I should be eating naturally. How can our digestive system heal if its always working? How can we work the next day if we dont get our rest? I believe its quite similar for our bodies in terms of healing, we get caught up (or at least i do) with all the marketting bs that sometimes we forget the simple things. Why do we need to eat 3-5 meals a day? A faster metabolism why? (Just means our cells age faster, meaning we age faster). Many studies with intermittent fasting and fasting in general that show great health benefits (autophagy etc). Im still trying to find a balance on the liver dumps, but the less visceral fat and better shape Im in, the less it dumps provided im not running 25km or doing 2 hours of kettle bells. Also I wont say anything on pumps because again im not a doctor, however I feel like I have more control over my body when im manually injecting vs a machine doing it for me. I also give my body a chance to work on its own. I hope ExtremelyWorried will see that her life is filled with great benefit and that it is 100% worth living. And hey, if you need someone to tell you more often im sure theres many of us in here that will gladly tell you whenever you need to hear it! As for you Contralto, you have been kicking t1 in the butt for many years, what say we give it the final kick and beat it once and for all? I will post links on stuff I try out. Right now t1 is a curse, but when we win this fight it will be the greatest blessing of all because of all the hard work and effort we put to truly appreciate our lives!!
     
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  3. Miso89

    Miso89 Type 1 · Member

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    Also, ExtremelyWorried

    Dont be scared to enjoy yourself. Im not saying binge on carbs and unhealthy stuff but damnit were human beings and we do have insulin to help us out. Dont be scared to once in a while enjoy something for all the hardwork your doing to beat this thing. And if your really anal about what your eating (like me) there are healthy alternatives to different ingredients. Eitherway, dont deprive yourself of things you enjoy eating, just dont abuse and binge. Think of all the people that dont have diabetes who eat all that unhealthy stuff and eat 3-5 times a day. You think they're all healthy? You think they all wake up every morning appreciating that slice of apple pie they got to enjoy the night before? Im sure some of them do, Im not trying to compare to them more so for you to see YOU CAN STILL ENJOY THINGS! :D
     
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  4. EllieM

    EllieM Type 1 · Well-Known Member

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    To NoKindofSusie
    Why the ultimate failure? You'd have to move back in with family in Australia? Give up your job?

    I don't think your diabetic treatment will be much better (or worse) in Australia. Possibly a little more expensive, as diabetic supplies are subsidised rather than free? Since you've been diagnosed relatively recently I wouldn't be in a rush to make major decisions like changing jobs or moving countries, as your diabetes probably isn't stable yet and should be easier to control once you're out of the "honeymoon period" (when your pancreas occasionally produces insulin) and you're more experienced at managing it.

    Most T1s do manage to work out how to control their diabetes without sacrificing their lives. I truly believe you can too. Good luck and Illegitimi non carborundum (don't let the bastards grind you down).
     
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  5. leahkian

    leahkian · Well-Known Member

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    Everyone should be allowed to say how they feel as no two diabetics are the same and we all feel different at certain times. This does not mean anyone is right or wrong, it means we are humans with feelings and at times they are negative this is all part of diabetes. It will be 3 years in April since i had my transplant and i am still in part living like i have always done as it had become my life, i sometimes wake up during the night and go to pick my pump up but its not there. This will be the same as people getting diabetes in their 20s they have lived a life where they get up on a morning and have nothing to worry about but diabetes changes all that and what can you do. You can try and get as much information as possible and try and get good BS or hate the disease and wish you were dead as you don't want to live, both ways are wrong in there own way you can try to hard and have hypos or not give a dam and have high BS. The honeymoon period makes it difficult to control your BS, most people stop producing their own insulin after a year so then you are only getting insulin that you put into your body and sometimes BS go all over the place for no reason at all. If you go on holiday to Spain and it is hot the insulin works faster but in the winter most people need a little bit more insulin because of lack exercise or eating a bit more. Diabetes is a day by day illness which after time you can have a rough idea of what your BS are going to be but you need help from the diabetes team, mental health team, family and yourself because you know your body better than anyone. You can get all the advice but it is up to you how you use it, there is no one who can tell you it has to be a personal choice and yes many choose denial and that is their choice. People worry about problems in later life and i did but the problems still came and all the worry did was unstable my BS, diabetes is life changing but so are a lot of illnesses like my father got polio aged three and has had a load of ops in his life but is still here, my mother had her stomach removed because of a tumor and spent 6 months in hospital with MRSA but she has just gone to Tenerife so she is not letting her illness stop her. Then both of my parents had to bring up a diabetic when it was not well known as it is now and have seen the effect it has had on my all parts on my life and i have to live with that burden that i am still putting them through as well as i know there is a family in this country who lost a 23 year old male and i would think that they would think why him because i do and i also feel guilty. These are things i cannot control like diabetes, the thing that i always wanted was control but diabetes took that away so i had to adapt, i worked in a factory working both night and day shift, worked on building sites before going to work as a salesman selling fruit and veg. So with every job the insulin needed, sometimes i would work a 12 hour shift then go to play football at quite a high local level and then have something to eat at 10 pm before going to bed for another 12 hour shift. In the end i gave up playing football all together at 28 as i became a dad but also i was told a knock on the head could start a bleed behind the eye and also i was finding it hard as my renal function got worse. The team i was playing for offered me more money to play and that i would not have to play in any mid-week games but as i told them i could not take the chance and would not play if i could not give my all, even my local sunday morning team said i could play for them and not head the ball.. I was depressed for 6 months after this and hated diabetes more than ever before as it took something i loved doing. Then i was asked if i would do some coaching i said ok and they sent me on a couple of courses and started to coach a girls team which i did enjoy but after training the coaches had a game of 5 a side with no over head height rule, i felt alive again. My son now plays and all the parents want me to coach the team but i told them i do not know how i am going to feel from day to day but the enjoyment i get watching my son play makes up for everything even though my son keeps getting told you won't be as good as your dad. They are right because he will be better but if i let diabetes win i may never have got to tell you all this and people will still hate diabetes until a cure is found and i hope it is soon as i hate people not having hope of a future.
     
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  6. JTL

    JTL Type 2 · Well-Known Member

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    This is the hand you've been dealt and so far you aint playing it very well at all.
     
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  7. nessals946

    nessals946 Type 1 · Well-Known Member

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    Nobodys life was meant to be like this,not just yours.I was only 6 when i was diagnosed,i certainly dont consider being diabetic an easy life to lead.
    Im not going to try and give you advice,i think you have your mind made up and thats it.I hate having diabetes but there's nothing i can do to change it.You have the "why me?" mindset.Get behind the queue.
     
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  8. bangkokdiabetic

    bangkokdiabetic Type 2 · Well-Known Member

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    As others have said there is no rhyme or reason you have Diabetes you can ignore it continue with your lifestyle and gradually get sicker & sicker. Or you can accept the hand you have been dealt and deal. with it you are not the only one you can learn how to live with it how to fight it and this forum is full of ways to do this. yes you have to make changes but you don't have to change your life I am 77 yrs of age been diagnosed for over 20 yrs I go out to play pool 3 or 4 times a month in bars with heavy drinkers they accept me I drink coke zero or water whilst they get Pi---d I join in everything but the Alcohol We eat out together I just select suitable food from the menu avoid deserts etc Life does not end with Diabetes unless You choose that it should I have good friends who include me when they go on trips etc I intend to live my life and hope in 23 yrs to reach 100 that is my target
     
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  9. donnellysdogs

    donnellysdogs Type 1 · Master

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    Been reading this and it concerns me hugely.

    It seems that there are such negative answers from @NoKindOfSusie

    I'm to the point now that I am wondering whether poster is in her real life reaching out for sympathy.

    I relate this to things in my real life that I have noticed recently:

    With my severely disabled friend, she has two kinds of friends....1)those that have health problems and really, really doing everything to help themselves and see her as enabling them
    2) the second type of friends in her life may have health problems but they are actually trying to get everything she has ie a motorised 6 wheeler and also like to talk about their illnesses constantly and never ask about her health,don't help or offer to do anything for her. Between me and my friend, we actually now call it "compsting for disability" whilst others fight it.

    It seems to me that reasoning for improving life is getting chucked out the pram from Susie and only misery is an accepted form of commiseration that can be accepted.

    It is really alarming as life is based around challenges for everything, right from the start. Even childbirth for some. Some are bouncy babes and others struggle for life.

    Sadly I think that @NoKindOfSusie is unable to rise to challenges around life. Depending upon sympathy perhaps from others in real life and may have a depressive disorder that a GP should be advising on.

    Only @NoKindOfSusie can style her forthcoming life style, thinking and health ahead.
    No challenges or ways of helping thoughts are being met with anything else but negativity.

    I would just end this posting with a note, and this note is for all humans, not just diabetics..
    "Smile and the world smiles with you" and smiles are catching... walk down a street today and just smile at one stranger... and that smile has spread.. that person will smile back.
     
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  10. wendy0804

    wendy0804 Type 1 · Member

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    You seem to have a negative answer to everything. Diabetes does not stop your life unless you let it. I have been Type 1 for 35 years, have 2 children, now 1 granddaughter and don't let it stop me doing anything. I totally agree with previous posts - you need some counselling, support and depression management. You can't carry on your life in this way. GET SOME HELP.
     
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  11. wendy0804

    wendy0804 Type 1 · Member

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    WOW how can you live in such a negative world? You obviously need some professional help or do you secretly like the "poor me" sympathy vote. I have been T1 for 35 years now since my first pregnancy but have not let it stop me doing anything I want to. I have 2 adult children (one diabetic) and a beautiful granddaughter. Wishing yourself dead is absolutely appalling. Some people with incurable ailments would love to have your medication managed condition. Life is what YOU make it. GET SOME PSYCHIATRIC HELP. What a waste of your life.
     
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  12. Chowie

    Chowie Type 1 · Well-Known Member

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    It's whatever you make it in Aus. Get a good GP and everyone else will be great. Get a bad GP, go find another.
    Costs converted into the universal currency assuming not on welfare
    Insulin = 5 big Macs 25 x 3ml pens
    DR visits (GP) = 7 big Macs
    Specialist = 15 Big Macs
    BG Strips = 2 Big Macs
    Pen 'caps' free

    Pump Supplies cannula sets approx 3 Big Macs a month
    reservoirs 1.5 Big Macs a Month
    Private Health insurance truck loads of Big Macs, but worth it.
     
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  13. becca59

    becca59 Type 1 · Well-Known Member

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    Ha ha! Love it!
     
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  14. videoman

    videoman Type 1 · Well-Known Member

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    What I cannot uderstand if using a pump you do not have a syringe as a backup After 55 years of being a T1 I look on life as any normal person would just taking more care in what I eat and drink?
     
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  15. RJS91

    RJS91 Type 1 · Member

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    I can certainly vouch for the effect of depression on T1. Of course the anxiety attacks and Asperger's doesn't help, but certainly the (very medicated) depression makes it seem less than worth it. When my blood sugar is high, my head either runs through every possible reason for it, or I just stop caring, jab myself some extra insulin and hope it sorts it.

    To constantly monitor the situation only to see it fall apart on a whim is nothing short of disheartening. At this moment in time, I have no significant other or any descendants (and I don't see that changing), my T1 skipped two generations and landed squarely on me and no-one else. I constantly ask myself why. It would take a tyrant's cruelty to wish it on any one person, yet... here we are.

    There is one thing I can take from this. I stand as a direct violation of humanity. That makes me chuckle, if only for a moment.
     
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  16. Miso89

    Miso89 Type 1 · Member

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    @Contralto
    Some herbs and spices ive looked into and tried myself nigella sativa, termis seeds, goldseal, horsetail. Im slowly trying these 1 at a time over a course of a few days or weeks to see what they do individually instead of just hucking them down into my system as i did before lol. Also Vitamin K foods also stimulate islet cell proliferation and regeneration, things like natto (im japanese so i am use to fermented soy beans :D), hard cheese, egg york, chicken liver, ground beef, chicken breast. Make sure you can trust where your getting the ingredients not to be anal but youll be helping your body more. Important thing is its a lifestyle change not a "im going to eat this for 1-2 months and ill heal" type bit. There was a study done on t1 diabetic rats over a course of 30 days. a dose of 5 or 10mg/kg of diosgenin(natural medical component found in yams) and fasting BCL, LDL Cholesterol, triglycerides, liver enzymes, glucose-6-phosphatase fructose-1, 6-biophosphatase and LPO levels were all significantly impacted in the right direction with moderated consistent consumption of diosgenin. Im not too sure what the "dosage" is for humans as our metabolism and routines are different especially from that of rats however I will try incorperating a smaller portion of yams into my diet maybe once a week and see what the results are. I hope no1 jumps into these things, again to clarify im not any sort of professional, i just try things on my own because I will not leave it up to my doctor to take care of my own health. Good Luck Contralto, hope you see great benefit!

    Sincerely,
    Adrian
     
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  17. YunmaKahn

    YunmaKahn · Member

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    Having hard time understanding what is really going on here. Title doesn't sound like someone looking for a load of world-shaking suggestions which he/she probably has been and will be hearing for the rest of his/her life, same with the mainly targetted person in the topic ... Can you claim any of these to have %100 chance to work for everyone ? Maybe all failed ? People just can not be frustrated ? Maybe could not find any other place to pour their hearts out ?
     
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  18. kev-w

    kev-w Type 1 · Well-Known Member

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    So what's that in Double Whoppers then?? :p
     
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  19. leahkian

    leahkian · Well-Known Member

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    We all have our views on nokindofsusie but at the end of the day she has to make the choice herself, we may not agree with her but it is her life and she has to make of it what she can. From what i have read she does seem negative but also strong willed and had a life changing disease happen to her and has no family to lean on for support. If Susie is feeling negative that is normal as many of us have felt that way but if given time and help she may become more likely to ask for help, with her strong will i think she can give herself a chance of a different life than she had before. Diabetes is not the same as other illnesses so it does take time to get your head around it but you have to take little steps before you can run, i believe that Susie will get there in her own time and would like to say to her if she wants to talk, have a rant or talk about the weather that she can message me anytime because talking is a release and if you don't have that then you bottle things up and it makes you feel worse.
     
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  20. Draco16

    Draco16 Type 1 · Well-Known Member

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    Hi,

    This thread has prompted me to engage after years just reading! To those saying close the thread I couldn't disagree more: honest, authentic discussion is vital on this subject. For me reading the realities of how serious this condition is focuses the mind. If you prefer a more rose tinted world and don't like this thread then don't read it... and you'll probably want to avoid several others at the moment that deal with the downsides!

    And some of the "I just got on with it" or "you're not handling it well" comments from people who have entirely different diagnosis, medication (none needed) and testing regimes (none needed) and prognosis are bizarre to say the least!

    @NoKindOfSusie I actually do find humour in many of your responses, (albeit of the black variety!) This is good and will help. Your posts and the feelings you are expressing I think are entirely reasonable, normal and in line with many newly diagnosed T1's; they certainly resonate with me. I can also empathise that your diagnosis has come at a particularly cruel age when you had figured out who you are and had the world at your feet (you still do btw). I was 37, so slightly luckier, but I still resented it as I could recall how care free life was just weeks before.

    You're perfectly entitled and it is not unusual to feel how you do at this stage: it's a life changing diagnosis with potentially devastating consequences. Even the medicine needed to manage it can kill you! It's a very big deal, no doubt about that.

    I actually think the fact that you are posting and engaged on the forum shows that you are actually keen to tackle this but you're still understandably - and perfectly normally - scared, resentful, frustrated and just trying to get your head around it. I know I was. Sadly I recall many new T1's who posted here once or twice with similar feelings and then just disappeared - so fair play for sticking at it.

    It appears you're doing the fundamentals - testing, injecting and learning - but like most in the early T1 months you're struggling with the shock which is not unusual at all. You're doing absolutely fine 3 months in. If it was 3 years in then we have a problem!

    And yes while it is permanent, it's definitely true that you get better at managing it, and like it or not memories of your old non-diabetic self fade (that you are currently benchmarking yourself against)... so it gets easier all round.

    The options you listed are not quite right, it's more like:

    1. don't be so careful - have a worse life now & have a worse life later - but make no compromises

    2. be more careful - have a better life now & have a better life later - but accept compromises

    (The reason on 1 that it is a worse life now is that even in the short term if you aren't being careful, if you're suffering persistent high and lows, you'll feel bad, nauseous, down... even putting aside the long terms implications of this approach)

    The word compromise I used above (others might use 'adapt' or similar) is for me the key thing you need to comprehend.

    While I can do pretty much everything I did before (ski, snowboard, sex, cycle tours of 1,000 miles in a week, climb 5,000 metre mountains, ride motorbikes, run marathons, eat, eat out, work) I have to compromise / adapt on all of them compared to my old non-diabetic self. Typically the compromise is in time, planning and less flexibility / spontaneity; not that you can't do things full stop.

    Learning compromise is a very useful life and business skill though: this is perhaps the sole benefit of T1 I have found!

    If I had to put a number on it, I would honestly say that I have 85% of the life I had before. Sometimes higher, other times lower. Some aspects of it I am still rubbish at (eg telling other people). I have a good HaBC1 of 38, but still have physical and emotional ups and downs.

    My CGM helps massively, if you can possibly get one then do so.

    I don't think anyone is really honestly saying it is great - though perhaps some people are closer to 100% (virtually no impact at all). Though for some who have posted saying it is ok/fine, do look at their previous postings and you will find that all has not always been well - especially in the early months of diagnosis - but they're now examples that things get better, a lot of that will be through time/learning improving things and also their mind strengthening as their pancreas weakened. As mentioned some other commentators you can discount and how they eg "I just got on with it" as they are talking about entirely different diagnosis, medication (none needed) and testing regimes (none needed) and prognosis.

    I don't like it and certainly don't think it's great. I hate it. But in managing it I use that as a motivating factor: to me it is a competitor I want to beat. I beat it by keeping my bloods in range while still doing stuff (accepting there will be compromises). Nearly every day I win. Occasionally some days it will beat me. If you're struggling just try to win the next 5 hours. Then the next 5 and so on. Then introduce more variables (i.e. activities). So perhaps a competitive mindset of i'm going to beat it (rather than I have to accept it) might also work for you.

    And remember in the first few months post diagnosis the long term target levels will take a while to become consistently achievable as you're coming from higher levels, and it is just generally always tricky as all the variables are constantly changing! So give yourself a bit more slack at first, you don't have to be perfect from today (you never will be). Patience is important.

    It's hard. I'm sure like everyone you'll have used the words "it's too hard, i'm not doing it" and stormed off / given up at various points in life before: learning to ride a bike, a language, a new skill, etc. You've mastered other things before, you'll do the same here.

    So while I don't think 100% (no impact) is possible, I'm far more incredulous about the 0% (my life is over) mindset. But fair enough if that is their experience.

    All of the above is just in my experience.

    You will define yours.

    Finally, the two best bits of advice I ever had in life (and have helped cope with T1)!

    - Time will heal the more painful moments
    - Whether you think you can or you can't - you're almost certainly right

    PS - I've decided in 2018 to be a little more open about diabetes rather than hide it away. Part of that is posting here. Another is telling people, as mentioned above I really don't like it. But I thought it'd be hypocritical if I went onto a forum to give out advice, if I wasn't prepared to follow advice that i've been given.

    So tonight having a couple of drinks after work with an old colleague i've known for 20 years I decided to tell her as we were having a how's life panning out type chat. As the idea came into me head my anxiety leading up to actually saying it was extreme. But then I heard the words coming out of my mouth "can I tell you something"... now imagine a really bad Hugh Grant, bumbling umms and ahhs and silences... it literally took me about 3 or 4 minutes to get it out "i'm a type one diabetic". She looked at me as if I was a complete lunatic "is that it?! I thought you were going to say you had won the lottery!" She really couldn't of been cooler about it. Maybe i'm now at 86%!
     
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