Tuesday, June 22, 2010

How is living with your partner's diabetes for YOU? Tell us more ...

Since I've been receiving some wonderful comments and email from the posts that I've put out here on my experiences of living with someone with type 1, I thought I'd ask you all to share some of your experiences too.

Although we know that we are not alone in living with someone with diabetes, we also know that it can be somewhat isolating at times. There aren't nearly as many resources or knowledgeable sources for the kind of specific issues we as spouses, partners and loved ones of people with diabetes face. One of my biggest goals in starting this blog was to provide a place that people might find some commonality with their own experience - a chance to hear from someone who "gets it". But I would love to hear from more of you - you all have as much experience, wisdom and "lessons learned" as I do. Let's hear them! Let's put it out there and see if indeed there ARE things that we can enlighten each other on... find support for ... get validation of...

So I would ask: How is it for you in your daily living with a person with diabetes? What are the most critical issues you face? The biggest challenges? The most powerful wins? The biggest anxieties?

How much do you feel "control" issues affect your relationship (yours or theirs!)? Are you happy with how your loved one takes care of themselves? How much does diabetes-related fear and anxiety affect your overall wellbeing? How well do you both communicate around their diabetes? Are there any "hidden emotions" at play in the relationship around the diabetes? Are they (or you) getting "burned out" by it all? How do you cope?

What else? I'd love to hear your story.

26 comments:

  1. Hi Ashley, thanks for your comment on my blog. I blogged again tonight on just one of the issues that comes up as a spouse of someone with t1. It's nice to see there are other people blogging about this. I feel like it's so important to raise awareness, so thank you!

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  2. Hi Misty - thanks for your comment. I agree, it is so important to get awareness out, let's support each other! It's so nice to connect with others who "get it".

    I just read your post from last night - oh yes, the driving ... actually that seems to touch a lot of nerves, because it is the page on my blog that gets the most hits. We've had our close calls ... and I can so relate to what you wrote. But I love your humor! And you really are an amazing photographer ... we seem to have similar lives. :)

    Check back anytime - great to hear from you!

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  3. Hello,
    I am the partner of a 37 year old, type 1. We've been together for almost 4 years, but I've known him way longer. He's been diabetic for 37 years. It is really hard. Especially lately, he has terrible lows, seizures sometimes. It's so scary. I have anxiety everyday and am trying to deal with it, since it seems to be tearing our relationship apart and I don't want that. I love this man, and watching him struggle with this kills me. I appreciate your blog, there are not enough resources or support groups for people like us. It is so helpful to know I am not the only one going through this. Please continue to blog, and my email is flowrchic25@yahoo.com. I would certainly appreciate feedback on how to control the crippling anxiety that comes with severe hypo's. I need help. Thanks again.
    Jess

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  4. Constantly challenged,
    I have been living with diabetes for 20 years but the disease belongs to my husband and several family members. I am only a caretaker, monitor, nurse, counselor, maid, nutritionist, secretary, functioning brain, business partner, and energy for my husband's life giving activities. Life never intended for him to be a good self monitor and he has always relied on me. I am angry and want out of the situation but backing out or leaving is a coward's lot and not healthy for our children. I view us as living in another dimension from most people and have gone beyond being reactors and controllers of the disease, but are about the allotment of the energy, means and time we have left for zestful life and the people we share it with. Unfortunate but true. We can't control the disease and how it is pulling us under financially, emotionally, physically and mentally. I feel like I have lost a battle while the disease continues and just compounds. There is no method in living with diabetes, no recipe.
    One of the most effective things I have done as caretaker is nurture myself, heavily, so that I have something to give. I write, paint, photograph, retreat, maintain a spiritual perspective,learn new languages and participate in any freedom that comes my way. Creativity is fulfilling. I am challenged constantly with balancing my pursuits with the needs of helping my partner continue being a working, functioning person. As well, I choose the company of healthy young people as they they give me fuel & fire to keep going. I live day to day in expectation of something good or something better coming my way. Creative cooking, spa retreats, and low key conference sessions keep tomorrow fresh while giving us both something to look forward to. I keep looking within to find a balance to overcome the emotional lows that both nurturer and disease owner struggle with in daily life. I have loyal supporters who lend listening ears. To have a group of them is sublime! Thank you for sharing your struggle. My hope is that someone benefits from this blog.

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  5. Carol,
    Thank you for such an honest, inspiring comment. I'm sure that so many of us can relate to what you say ... living with a PWD, and the role that it puts us in - whether we've asked for it or not (usually not) - is a very complex thing. We do our best, we constantly have to reassess where we're at, both individually as a person, and as a couple. Even though my husband is very well-controlled in his diabetes care, and thus I get to "forget" about it for long periods of time (I count myself very lucky in this), the disease still has the propensity to stick its way in between us, and remind me just how humble I am in its presence. It happened just last night ... after helping my husband through a low of 35 and some of the emotional fall-out from that, we still hit a wall between the two of us ... something that I still find unexpected after 13+ years living with the disease.

    I really appreciate the words you wrote on how you take care of yourself in light of what you live with on a daily basis. It is so very important - ALL of us need to be doing this, to keep a balance in our lives, and to keep the diabetes and its effects in perspective. I love your positive energy. I too find ways to shed the stress of constant fear and worry - I also paint (a great way to completely FORGET and focus for a few hours at a time), and highly recommend that everyone reading this find something equally stress-reducing.

    Thank you so much for your comment. I look forward to hearing more.

    Take care,
    Ashley

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  6. My husband is a type 1 diabetic we have 2 kids a 4 year old girl and 8 year old boy. My husband is 29 and considered a brittle diabetic. He's the 3rd generation diabetic and both his grandpa and uncle passed away due to diabetes at an early age. My husband recently started having seizures this alone scares me, I worry when he picks the kids up, he isn't the same person anymore......and I'm alone and terrified.

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  7. To believe,
    Thank you so much for your comment. I know how scary it can be when young children are involved ... (we have a 3 and an 8 year old). Just know that you are NOT alone in this, there are many others out there like us. The most important thing is to keep reaching out and finding others to share with. Feel free to reach back any time here, and I have a few other places you can begin to find others that will understand:

    Diabetes Mine:http://www.diabetesmine.com/tag/spouses-of-diabetics

    TuDiabetes - a great online community of support for "type 3 diabetics" (the spouses!) http://www.tudiabetes.org/group/typeiiidiabetes

    The Behavioral Diabetes Institute - http://behavioraldiabetesinstitute.org/

    A good video from dLife on how PWD feel about their spouse's intervention: http://www.youtube.com/watch?v=D9pKp6NLVg8&noredirect=1

    Hope this helps - hang in there.
    Ashley

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  8. Im am so grateful to have found this site. I have been with my BF for 7 years.. He has now been diagnosed for 3.. lately however im at a dead end.. My BF is 5"11 and 260lbs and only 30 years old. His weight has been a concern for me ever since the diagnosis. He refuses to work out and although i do not keep any un healthy food in the house if possible he still goes behind my back and eats it anyways. He will not eat a home cooked dinner unless i cook it. Its so frustrating to watch the person you love killing himself. We have had 2 major scares in this last 3 years and i feel like he hasnt hit bottom yet. I have tried everything but its been 3 years and no change. I feel like me leaving may unfortunately be the only way to save his life. I cant even imagine the thought of not being with him but i obviously and not able to help him.. I have never knew anyone with diabetes let alone know how to take care of someone with it. Please dont think i want to give up on him i just dont know where i should go from here.

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  9. Hello,
    My name is Rachelle and I have a boyfriend that I am very serious about and he's a t1 diabetic. I'm having a hard time right now because my boyfriend is having a hard time with his diabetes amongst other things and he's only 26yrs old. He asked to take a break because he's going through a lot and thinks I don't understand and he doesn't communicate with me. I don't want to lose him so I've granted him some space to get his thoughts together but I want to be a better supporter in this disorder, how can I do that without making him feel overwhelmed? Especially if I physically don't know what he's going through?

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  10. Oh my I am so glad I am not the only one!! My hubby of 11 years is t1, 36 and constantly sick. He became blind 9 years ago from retinopathy and has been deeply depressed since. It has gotten to the stage that I cant leave him alone at home for more than an hour with our children as his diabetes is so incredibly brittle that he no longer can feel an episode coming on. And I worry that he might become dangerous and I will not be there to protect the kids. His hypo's and hypers are frequent... from 3 to 10 everyday with at least one being quite bad. We are financially sunk and I am emotionally dry. I am constantly on guard and anxious. I never know what is going to happen next. My hubby is verbally abusive when in hypos and hypers. He sleeps most of the time when he is home from being exhausted by his ups and downs. I feel like he is giving up. I am so tired from fighting for him that I have considered leaving him so I don't have to deal with it all any more. I CRAVE a normal life that does not revolve around this disease. Every time he is late home from work and I think he might be having a hypo and on a "wander" to god knows where and I wonder if I will ever see him again. He is so secretive about his disease that I feel mean or intrusive when I question him about it all. But I feel so stressed and scared all of the time that I feel that he owes me the truth as he is not alone in this. The one day every month or so when he is feeling well and happy give me a glimpse of how things could be and I love those days. The rest are tough.

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  11. Hello,

    my boyfriend has type 1 ... and i have a hard time telling when his sugar is low .... ik the symptoms of having low blood sugar but i still can't tell..... is there an easier way to know

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  12. I have been with my partner for six years, in January of this year he was diagnosed with type one diabetes. We both seemed to take it in our stride, everyone was so relieved to have an answer to my partners rapid weight loss, general demeanour and extreme thirst. Finding out he was diabetic was almost a relief, when considering some of the other alternatives. We both tried to gain as much knowledge about diabetes as possible. Six months later, our much planned wedding happened. Four months later we have hit a very big bump in our relationship. To many people on the outside, my partners diagnosis doesn't seem like much of a big deal, to him, me and his family it has had a massive impact on all of our lives.
    In the first few months after learning about his condition, I received nothing but praise from his family for my help and support. My partner is incredibly forgetful and I found myself constantly 'reminding' him to have his insulin before he ate, advised that I thought he should cut down on his alcohol intake and generally pestered him to test his blood sugar more frequently. At the time, I didn't mind... I felt it was my responsibility as his partner to help in any way I could. Now, I resent it. I am constantly anxious that he isn't doing what he should be, isn't facing up to the impact his condition has had on his life and mine. We are constantly falling out over his health and the amount he has changed since his diagnosis... He has always been laid back, patient and kind. His high's and low's change his personality so much, at times. I feel selfish that I am not handling this at all well at the moment. He is aware of how I am feeling at the moment, but I had begun to bottle up how I was feeling and the final straw came on Monday night this week. He had been drinking cider, had clearly over estimated the amount of insulin he needed and I thankfully woke when he came to bed. I noticed his breathing was very peculiar, went to shake him and noticed he was absolutely drenched. He was so disorientated I did what my instincts told me to do, I panicked. Ran upstairs, grabbed his glucose tablets and then tried to get him to take them. To no avail. He was confused, and arsey to say the least. I was about ten seconds away from calling an ambulance when he finally relented and took the tablets. I then proceeded to cry for the rest of the night, he had scared me so much (as well as checking on him every fifteen minutes or so!) I am terrifed of the implications of this disease and am even more terrifed that it is ruining our relationship, or that maybe I am.
    It is such a relief to read this blog and find that I am not alone. That there are others out there who are struggling with the same anxiety filled feelings that I am.

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  13. Hi, my name is Melissa, my partner of 1 year has had t1 for 15 years. He is 26 years old and having some very severe complications. The 1st thing is his neuropathy. He is constantly in pain and is taking oxycontin for it. And to make it worse his feet and legs are swollen with fluid. Is anyone else's partners going through the same or similar thing. He has had many tests done to find out what is going on with the fluid, but docs don't seem to know where it's coming from. He is constantly aggitated, in pain and his diabeties is up and down most days. I'm having trouble dealing with it. But really trying to stay strong. I am always worried and have a lot of anxiety when I'm not with him as I work full time. But I keep in contact with him all day. I just hope it gets better for him, I really hate seeing in in so much pain.

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  14. I have been with my husband for 16 years...but, we only married in September. He is almost 70 and has been dealing with the disease since 17 years old. He is a brittle Type 1. His blood sugar has crashed a number of times and I know, if I hadn't been with him, he wouldn't have made it. He still works and wants to feel "normal" by having a schedule and feeling productive. He is frequently dizzy and has lost a lot of weight in the last few years, after a very bad episode. I fear being away from him when he is at home and have a lot of anxiety about his condition...it is limiting and isolating to live this way, but, I can't imagine not having him in my life. The disease controls our life in every way.

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  15. I have been married to a type one diabetic for 44 years since the age of 19 and it has not been easy. He has a type A personality and must always been in control of everything around him - especially me and our children. I left him many times in the 70's and 80's because of his verbal and physical abuse. After a few days apart he would calm down and we would try again to make the marriage work. If you are thinking about marrying a diabetic THINK LONG AND HARD. He is now 65 angry, moody makes everyone around him walk on egg shells - long 44 years.

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    Replies
    1. Hi.
      I so need to talk to someone who understands what it's like to live with a type 1. Your blog was as near to mine. You wrote " Think Long and Hard" if marrying a diabetic, I have said exactly the same thing. I wouldn't wish that on anyone. No dis-respect to diabetics, but, boy isn't it hard to live with. My partner is a heavy smoker and drinker. Alcohol makes you go low. Once he is in a hypo, there is no reasoning. He has never been violent but I always feel he might be. He talks a load of gobbledegook and am finding living with him almost unbearable. I don't know anyone who has to live with this, that's why I wanted to find someone out there in the same situation. You are the nearest person on this site that suffers similar. My son is getting married this Saturday and I am sooo worried that he will ruin everything! I stumbled on this site and I don't know which country you are from. But if you would like to exchange e-mails etc. I am happy to do so. Just reply to this and I'll send you my e-mail address.
      Thank you

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    2. Thank god for you. I feel Lilkr running into wall,so scared of goung out with my husbanf he is type 1 and an heavy drinker. He as gotten worse over the last few months can't reason with him anymore. Want to leave but feel so guilty for feeling. The need too,and don't hAve anywhere to go..just so glad someone else understands

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  16. hi,
    i recently married my bf of two yrs. he is type 1 for the last 6 yrs, he is 27 yrs now. He is in good health and we both try our best to maintain his levels. Diabetes and maintaining it has become part of our lives, so much so that its hard to believe that there are ppl out thr without this. Our daily life is just like any other couple without type 1 would have. Everything is smooth, we love and understand each other a lot. he being type 1 has not affected us in any way except that we eat healthy, we check what we eat, we feel guilty at times if we indulge once in a while in sin food, and that before serving every meal, i need to inform him that the food is ready and that u may take your insulin shot. And thats about it. He doesnt smoke or drink, i guess that helps us in our endevour to keep him healthy as their aren't much temptations he would give in to.
    We have taken diabetes in our stride, we have made it a part of us, we do not keep sulking why is it their in our lives. We have accepted the fact that IT IS THERE and i constantly keep telling my husband that since u have it, believe that it is the only way of living, believe that life is this way only, don't compare yourself with others, you think that life is this only. Everything is going absolutely normal for us.
    BUT,i scared thinking what future holds for us. I love me so much, i am too scared that something can go wrong in future. i cant thank god enough to have given him to me in this only life we have. i just pray each day that i live my life fullest with him, i want to grow old with, i want him to be healthy always. i try my more than 100 percent to make him stay fit. i get scared thinking that for how long he can sustain this, someday diabetes might take a toll on him. I am too scared, i can't show this weakness to him, I have to be his strength but inside somewhere i am always scared :(
    i wanted to know can i expect a long healthy life for him or is it that diabetes will take a toll on him someday?

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  17. So glad I have found this blog, thank you to the person who started it. I have been with my partner for 10 years and married 4. He is 34 and has been type 1 since he was 16. Recently I have started to feel like noone(I know)knows what its like to live with someone with type 1. When we were first together it was hard for us to get life insurance as his blood was Hba1c was 13-14! I was only 18 when I met him so its been a learning curve but he's worked really hard and its around 7 now which is fantastic!!! but a better Hba1c brings with it a whole host of Hypos! You don't realise how you adapt to living with someone with T1 but when you stop to think about it, you factor it in to every part of your life - I need to find the driving article because I chuckle when I saw a comment about that!!! sometimes it gets tiring and maybe its because I'm a woman and he knows in the back of his mind that as long as he's with me he'll be ok but we've had some bad hypos - nearly crashing the car! having a seizure, lots of strange noises and breathing and collapsing in the super market!! a good Hba1c also has the hypo anxiety factor!! we're hoping to start a family and I do worry that children would be scared by bad ones as he can get quite aggressive. I think the main frustration is the denial! are you having a hypo - no. yes you are - no i'm not. you need to eat something - no i don't and so on!!! Driving has always been a concern but recently I have realised I can do everything can but if he collapses I can't catch him (he's too heavy). I don't believe he'd hurt me but when he's aggressive I won't touch him, so can't make him sit down or eat dextros and then after when he can't remember a thing and I feel like I'm been through a small war!! but I love him and its not his fault and I wouldn't wish it upon anyone. I have him doing a food diary at the mo to try minimise his hypos. He just doesn't think. Like when he goes to the gym and eats a normal tea he'll need to reduce his insulin otherwise he'll have a hypo!. When thanks for the place to have a vent - its been cathartic!!

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  18. My boyfriend was diagnosed with type 1 in may. we've been together all throughout college and we both graduate this may. after spending the past 3 years counting down the days until he has no excuse left to not propose, i'm dreading it. I've spend every night, shower, morning contemplating leaving.... and we live together with 2 friends. I hate it. I don't want to sound harsh, but our future is at risk because of his now genetic disease. I worry all the time but I don't think I can spend the rest of my life like this..

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  19. I have been with my husband for 11 years married for 6. He has had T1 since he was 8. We have 2 kids 5 & 2. We have been through so much together and its hard to imagine my life with out him. But when he has low blood sugars ( the lowest said seek emergency help) I want to shake him and tell him to keep his sugars under control. He has had multiple seizures over the years. He is angry with the world that he is diabetic. He can be emotionally and verbally abusive when his sugars are off. It used to be so mich worse when he drank. Which was everyday until he was drunk. No alcohol in almost 2 years. I dont know what it does to him (other tgan seeing) because he will not tell.me what it feels like or does to him to have low or high. I am afraid of him having an accident when he drives when his bs is at 41. I wonder whst happened to him if he is a few min late from work or fishing. I am scared to leave my kids witg him, because he no longer can feel low BS coming on. His dr says is hypoglycemia unawareness. Giving it a name does not make it any less scary.
    He eats healthy. He does not believe in counting carbs, or even taking his insulin before he eats. Right afterwards, not smart.
    I feel as though I have 3 kids. He has been pretty lucky with the rest of his health considering....
    But most days I want to leave. I love him and only want him to be healthy. But knowing no matter how long it is, he eill be a T 1 for the rest of his life... Makes me want to run for the hills.
    I am so tired of trying to make him understand that his highs and lows affect me. I would never change my kids for anything but i sometimes wish we never got married. I feel like I have to take care of him.
    Thanks for letting me vent.

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  20. When my fiancé and I first started dating it took a while for him to open up about this disease.By being diagnosed at the age of five he was use to taking care of himself, and was very self conscious about it. He'd hide doing blood tests, and wouldn't tell me if he needed juice, and the like. Therefore, I, who only had a general knowledge of type one at the time, was in for a bit of a surprise when his first scary low came in the middle of the night after a late night basketball game.Learning about this disease was the most challenging thing,and accepting that all I can really do is be supportive and be there for him and continue living our healthy lifestyle, because I, unfortunately, can't control his numbers and act like an outside crazy pancreas. Now I have learnt a great deal about this disease, but more importantly he finally talks about it.Needless to say it took a while, but now we face this disease together. I believe communication, like in most relationships, is the most important thing, and it has completely changed how we deal with type one together. It helps both of us. But one thing, that I unfortunately feel will never be able to shake, is the worry and anxiety that comes with loving someone with type one. Fortunately, he does take very good care of himself. He eats extremely well (especially after reading the China Study) is athletic, doesn't smoke,and drinks very little. But it's the feeling of helplessness when the lows happen ,worrying about the future, or just simply wanting to get rid of this frustrating disease so that HE can just live easy. How do others deal with this feeling?

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  21. It's so good to see there are other people out there who feel the same. Me and my boyfriend are 20 years old, and we have been dating for 2 years. He was diagnosed about four years ago. I haven't known who specifically I can talk to about this, because I have felt so selfish for feeling this much pain, when he's the one who has the disease. I get terrible anxiety from the thought, the sight, and even words that could be linked to him being in pain. For example, he has another blood test coming up and even writing that down makes me feel like crying. I don't have much experience at all, and he actually handles it all quite well, and there haven't been many issues, apart from the fact that i am not handling it well at all. He is very compassionate about my feelings towards it, but I still feel crappy for complaining. However, I do know that letting it get to me as much as I have is truly damaging to my health, and I have found that keeping myself emotionally and physically healthy has helped to combat that feeling. I have been seeing a short-term psychologist, just for someone to talk to about this, and that has helped as well. Venting feels good, and it makes me a better partner. Keeping active relieves me of some of that anxiety, and investing in other relationships (with friends and family for example) has stopped me from becoming fully obsessed with his disease. I get the feeling this won't go away, but i'm sure we can try and find another way to handle it so it's not so damaging for us, and therefore for our loved one.

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  22. WOW I'm the only guy to post here. My wife is T1 Brittle as rice paper. Between the failed gastric Bypass sugary. The battle for a continues glucose monitor with the insurance company and he poor eating habits. I know and have seen things that most would only experience in a bad dream. Our worst year was when her Bypass surgery was not going well. We went through 127 glucagon's in one year three in one day. I don't even want to calculate the number of days lost from lows, doctor visits and ER trips. Some days I wish I had it as easy as Cinderella.
    I've given up on doing anything for myself. It always seems to come back and bite me. She tries to do as much as she can she participates in many things and ALWAYS with a life is fine and going well attitude in public but at home I get the I'm tired, I hurt, I don't feel good, I need you to be quit it makes my head hurt when you talk. She suffers from migraines.
    She also has Fibromyalgia. So it makes for a very challenging routine. BUT she did not choose this nor did she hide it from me. I know that I am where I am supposed to be and that the good Lord will sustain me in my challenges. My faith plays a major roll in my sanity. YES I get down Yes I want to RUN.
    I know that I would only be running from my commitment that I made on our wedding day before God and Man. BETTER or WORSE. It could be worse I'm sure. Well the pity part is starting to break up so I should move on. Thanks for the listening and Keep strong. YES prayer is a wonderful thing.
    Sometimes its the only thing that does work.

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  23. I am here as a last resort and reading the stories has allowed me to know I am not alone. That is a good beginning for me because I live with a disfunctional diabetic who is in denial. I have gone to the classes with her and watched her have to go through diabetis related foot surgery. I have been a diligent supporter. Now her numbers are very high and she doesn't care to share them, so I don't know if shes in danger. Now I feel my blood pressure is rising as is my patience. I do not want to fail her, but I feel helpless. Glad I found this site, I will be back.

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