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MIIFIT's Photo MIIFIT Posts: 70
7/26/09 11:28 P

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Life is not for the feint-hearted. I applaud you. You're right--no one gets guarantees. And yes, he is absolutely perfect! So's mine (even with the diabetes!!)



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TALTEXANNA's Photo TALTEXANNA Posts: 409
7/26/09 9:14 P

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I just wanted to pop in with my two cents... I have an uncle who had Type 1 (diagnosed as a child in the 50's) who died of complications at the age of 32, his grandmother had Type 1 as well and probably died of complications (it was a long time ago and nobody around to tell us either way). I was diagnosed at 28 (three years ago this week, actually...). My husband and I were dating then, but my being diagnosed actually brought us closer because he was the best (still is) and since he has MS was/is able to help me adjust to my "new life". Which was all really just an intro. to my view on the decision to have a family:

My husband and I both have auto-immune diseases. However, we both wanted a family. We thought long, and VERY hard about whether we should have kids lest they end up with an auto-immune disorder along the lines of ours. However, at the end of the day we figured that anything can happen to anyone at any time. There is no promise of health just because someone's parents or family are perfectly healthy. Also, our conditions have made us stronger, more compassionate, more alert people and that's not a bad thing. So we had a son, and he's perfect (I refer you to the pic at left, lol). So, there's my two cents. emoticon

Edited by: TALTEXANNA at: 7/26/2009 (21:16)
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MIIFIT's Photo MIIFIT Posts: 70
7/26/09 7:25 P

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Hey ADER
I remember getting my son up early on weekends to do his pens...that was not fun. I love how the pump gives you normal life again....or at least, something closer to it.
We don't have the continuous glucose monitor. The clinic has some they loan out for a week at a time--we should give it a try. My son is trying to take guitar lessons and it's painful on the fingers with all those picks he has to do.
Yes, you're right--it's always so unpredictable from day to day. I was hoping that it would be a little more consistent for my son when he became an adult :(
But perhaps not.
The only case of Type One in our family is a cousin of my husband's. He's not alive (but that had nothing to do with the diabetes). My dad has Type 2 as several ancestors did before him, across all the generations. Guess I am next in line. Maybe not. He was the only one of his 7 sibs that got it. If it happens, it happens. Trying to shake off this weight so I can decrease my odds.

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MIIFIT's Photo MIIFIT Posts: 70
7/24/09 3:12 P

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So nice to hear from everyone. Just a short note for now. I spoke to the clinic and all they suggested for the time being was a 30% basal reduction during exercise and 4 hours after. That doesn't seem very aggressive to me, but I'm no expert. Just a mom. We'll try it...and my kid will go low. Can pretty much guarantee it... My aunt who is a diabetes nurse (but doesn't work with pumps) says her patients cut back ALL their insulin (incl ratios for carbs) 50% when they are very active. I will let you know how it goes...

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ADERNH's Photo ADERNH Posts: 576
7/24/09 2:42 P

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Just popped in to say Northern Exposure was filmed in Roslyn, Washington! I always wanted to visit Roslyn when we would drive past it on I90.

I have been diabetic for 35+ years and was 15 when diagnosed. I used to take 1 NPH shot/day and test my urine! I am now on an insulin pump with the Continuous Glucose Monitor. I love my pump and BGM compared to what I used to do.

My mom used to get me up early on the weekends to take my shot and eat then I would go back to bed. My dad, a veterinarian, gave me my shots in the beginning. I finally started giving them to myself but would drive the nurses nuts since I would put it in slow not fast! My dad used to tease me that the reason I started giving my own shots was because he gave them to me like he gave shots to cows!

I used an injector with my syringes and now use an injector for my pump infusion sets and CGM sensors. Sometimes it hurts but most of the time it doesn't.

I find the most frustrating thing is I can do the same thing (food, exercise, insulin, etc) 2-3 days in a row and every day is different! It isn't (and really won't ever be) consistent.

We didn't find any close relatives that had Type 1 and only 1 distant one with Type 2 when I was diagnosed. I have 2 children and so far (ages 24 & 27) no sign of diabetes. One of my brothers has been diagnosed with Type 2 recently.

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SUPERDUPER26's Photo SUPERDUPER26 Posts: 1,553
7/24/09 2:01 P

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www.diabetes.org/type-1-diabetes/wom
en
-diabetes-faqs.jsp


"Will my children inherit diabetes from me?

It all depends on risk factors that include: no diabetes in the family -- 11% chance of type 2 diabetes by age 70 and 1% chance of type 1 diabetes by age 50. One parent with type 1 diabetes -- 6% chance of type 1 diabetes (father with type 1 diabetes), 4% chance of type 1 diabetes (mother with diabetes who was younger that 25 when the child was born) and 1% chance of type 1 diabetes (mother with diabetes who was older than 25 when the child was born). *Risk doubles if the parent was diagnosed by age 11* "

So I only have a 2% chance of passing on diabetes, which is pretty small, especially given that the normal population has a 1% chance of getting it anyhow. Have you ever watched "Steel Magnolias" though?

The getting fired issue was dumb, and I guess I wasn't technically fired, but they wouldn't renew my contract. They made me (and everyone) get a physical with THEIR doctor, and he said I was okay to get on a boat (personally I thought he was pretty dumb and probably got paid on the side for approving us so they'd have a full crew, but that's not the point) but having me on board made the ships medical guy nervous, and I got whatever cold was going around and my BG shot up for a few days and it freaked him out so as soon as they could get rid of me they did. It worked out in the end, the lady on the phone who did the hiring was stupid enough to tell I was being non-retained because I was diabetic, so I promptly filed a suit with the Equal Employment Commission and eventually bargained with them for a big enough settlement post-taxes to buy my first pump.

Yeah, our health care situation is a bit absurd, and people argue both sides of it left and right and back and forth all the time, but I tell you when I rule the world, it will be different and ALL people will have access to whatever they need to stay healthy and I'll pay them too for making good decisions (don't smoke, get exercise, eat vegetables, etc). Granted I'm probably going to have raise taxes, but if you didn't have to pay anything for medical expenses, I think most of us would still come out ahead. Not to mention we'd all be happier and healthier and can you really put a price on that? emoticon Probably I'm going to have to go find my own little country to start with, perhaps some lovely tropical island in the Pacific....



Edited by: SUPERDUPER26 at: 7/24/2009 (14:12)
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MIIFIT's Photo MIIFIT Posts: 70
7/24/09 11:26 A

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Diabetes without health insurance is unimaginable to me. Outrageous. As if this disease isn't hard enough to cope without the added stress of financial strain. I hope Obama tackles this issue of health care reform in your country very soon; I think the situation in the states has reached critical mass. People losing their homes because they have cancer? Absurd.

I worry about Aaron's future job situation. What if no one will hire him because of his diabetes? Discrimination is illegal, but people find ways around it to discriminate. What carrier will want to fund Aaron for insurance? You were actually fired for being diabetic??? That couldn't be legal...??!!! Even on a fishing boat!

Oh, the exercise issue is such a struggle for us. I am sorry to hear that it is for you as well. I am calling Aaron's clinic today and I will post whatever tidbits of knowledge they give me here later today. You probably know all there is to know...

I hope Aaron finds a girl as compassionate and understanding as your bf some day. It's a lot to deal with. That's another thing I worry about.

I hate that lack of understanding the population has about the differences between type 1 and 2 as well. It certainly is not what I fed Aaron as a baby or the eating habits I reinforced that caused his diabetes. He doesn't have an ounce of fat on him, and there is no kid in the world that loves veggies more than this boy.

I totally respect your decision not to have kids. I have four myself...not easy, and almost impossible to take care of myself when raising that brood, including one with Aaron's needs. But one thing I want to ask...I thought that type 2 had a genetic link, but they have not established that with type 1...? If Aaron wanted to have a family one day, I would hate to think that his diabetes would be the issue that forced that dream aside. I want him to have a completely normal life in every way.

Oh, I had no idea "Northern Exposure" wasn't filmed in Alaska :( Kinda spoils it! Well, you don't have NE, but at least you have Sarah Palin (not sure how to spell the name; I really haven't paid that much attention...!) Oh wait, you don't even have her any more, do you? LOL!

Our climate here is kind of extreme too, in a seasonal way. Usually we have suffocating humidity in the summer (although this year, it's been rainy and cool, so we haven't had to run the air conditioning much). Winters are long and cold and very snowy. I haaaaate winter. Fall and spring are short, but spectacular--the trees are postcard beautiful in October.

That's cool that you are involved in the family support group. My family is not the support group type--but I am! It is hard as a family to deal with diabetes, but we have it a lot easier than the actual diabetics do. You sound very positive about the whole thing, and the way you live your life. That is 99% of the battle.

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MIIFIT's Photo MIIFIT Posts: 70
7/24/09 10:59 A

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Hello...
When Aaron was first diagnosed in March 06, the clinic team encouraged him to go to camp, but he just couldn't be talked into it. I know it would be a great experience for him, but he is very comfortable at home (too comfortable) and now that he has his friends and his drum set and his x-box and his bike, I couldn't pry him away from home with a crow bar! But you are so right; he really needs to do things like that. I hope as he grows up that he will extend his comfort zone more and take advantage of more opportunities.
I'm 47, too. You have had diabetes for most of your life...if you were only two, you probably can't remember any kind of life without it. Wow.

Edited by: MIIFIT at: 7/24/2009 (11:01)
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DOWNWEGO Posts: 3,176
7/23/09 9:46 P

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Have you ever thought about sending your son to a diabetic summer camp? I was diagnosed with diabetes at the age of two. My parents gave me daily shots until the age of 11-the first year I went to camp. Seeing other kids all in the same boat as you and knowing even younger ones then you were handling this can really give you the motivation you need. I am now 47 years old and still have many great memories or the summers I spent at camp.

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SUPERDUPER26's Photo SUPERDUPER26 Posts: 1,553
7/23/09 4:26 P

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I work full-time for the University here, and I'm also taking classes part-time (but not during the summer!) so that eventually I will graduate with an accounting degree. Diabetes has weird side-effects, and in my life one them is delayed graduation- I've opted for the "8 year plan" for a 4-year degree so I can keep my job and the insurance it comes with as opposed to busting through school in a reasonable amount of time without medical coverage. It can be done, not well, but I actually didn't have insurance growing up nor did I when I got my pump initially. Its exciting now that I can pay more in house payments each month than medical payments, which isn't something most people actually appreciate (nor should they have to).

Work and diabetes is interesting, I've been fired before because of it so I'm extra cautious not to let it be a visible problem, but probably it would be good for me sometimes to ask for help or time off or whatever. Granted, the jobs I was fired from were all fishing industry- both canneries and big catcher processor stuff, much less glamorous than "Deadliest Catch" but same general industry- so its not like I was fired from a well-paying high prestige job, but it stings anyway even though I think they were partly right, they just went about it WAAAAAY wrong.

I get really frustrated with exercise sometimes because I end up eating more to fix the ensuing lows than I can possibly burn. I understand exercise is good for me for other reasons beyond calorie-burning, but its hard some days to think that its worth it. There doesn't seem to be a discernible pattern as to how low I get during which exercises, sometimes I swear it must depend on barometric pressure or something else I can't test for, predict or control in any way. Oh well. I do what I can, and that's just going to have to be good enough. I know there's a few on here who have exercise figured out mostly, but I'm not one of them yet : (

I live by myself mostly, my BF is over often but technically we don't live together right now. I got to "train" him in all things diabetes when we met, and just for kicks I took him along on my last doctors appointment so he'd get an idea of what comes up at those too. He's pretty good with most of it, he can handle a low without thought and he's semi-forgiving of my terrible crankiness when too high. He's a great advocate for diabetes awareness and is forever trying to make sure people understand the difference between type 1 and 2 because it makes him mad when people tell him if I would just eat better I could make it go away.
We don't have any kids and don't plan to- a joint decision with multiple reasons not the least of which is I think my genes are mighty defective and I sure don't want to pass them on, but also including things like we don't want to grow up enough yet to have kids, and we have too many big plans right now to fit one in.

I've not seen "The Proposal" and I think actually "Northern Exposure was filmed in BC, its totally not that cute and "towny" here. I'm in Fairbanks, pretty much the middle of the state and despite its small size compared to Real Cities, I think its about as big a place as I'd ever want to live in. I don't know what the actual population is, but we're the hub for pretty much everyone North and West of here, and many of the little places on the road system all come here to go shopping, I think I last heard about 100,000 people use Fairbanks as the big city although many don't actually live here.
The winters are different, crazy cold and dry and long, but they don't actually bother me that much. The extreme daylight in the summer and lack thereof in the winter are a little trippy at first, but its kind of cool to be able to watch the days change so fast. We're at 19h 6min of daylight right now and dropping 6-7 minutes a day, which is totally noticeable. One of the funnier effects of living here though is that dark=cold and light=warm, so places where its warm and dark are hilariously confusing. I've got a 2 week vacation in Denver coming up for my sister's wedding and I have to remember to pack my headlight (we're camping) but NOT a big jacket. Weird....

Anyhow, I like your responses. We have a Family Support Group in town and I have on occasion been the baby-sitter of the kids while the parents learn stuff about having kids with diabetes. I am a good 15-20 years older than most of the kids, and while I have a lot of diabetes experience, its all first hand and I have a hard time understanding what the parents are dealing with. I think its helpful for me to get a broader understanding of what diabetes actually does to families as a whole so I can be of slightly more use than just babysitting....


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MIIFIT's Photo MIIFIT Posts: 70
7/22/09 3:36 P

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I hope I am not aggravating you with all these responses, but it is so great to be able to talk about this stuff with someone who knows...an ADULT who knows! I appreciate your comments so much.

Alaska, how cool. "Northern Exposure," one of my favourite shows ever. And did you see "The Proposal?" Set in Alaska and it made me want to go there--although all the weird dark all the time or light all the time would really mess me up.

We live close to London, Ont--Banting and Best fame. I drive by the "eternal flame" frequently. Still burning, so no cure yet...London is also where the clinic is located, in a world-class hospital. The diabetes team is beyond fabulous. I am so grateful to be in such a perfect spot to deal with my son's medical needs. He was completely covered for the pump through govt funding and we are refunded 75% for his pump supplies. And we have a good drug plan. I can see how some people in the states might be bankrupted by diabetes if they didn't have the right coverage.

My son's name is Aaron. He just got a new bike and was low half the night after riding it all day. He just came in now after another ride--low again and starving to death! He had 80 extra carbs before heading out and still went low. Holy smokes.

You are brave to handle your sites that way. I wish I could look the other way! But that wouldn't bode well for Aaron...I always used ice when I gave him his pens in the stomach, pre-pump. It really does make a difference.

Do you work or have a family? How does it all fit together?

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SUPERDUPER26's Photo SUPERDUPER26 Posts: 1,553
7/22/09 2:02 P

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I'd forgotten about not keeping consistent with anything as a kid, that's hard to work around.
And okay, fine, I sure never would have wanted mental help then either. I guess now I'm old enough to see that it really can be helpful sometimes, but I'm kind of hypocritical in suggesting it as I don't actually want to pay for it.
I live in Alaska, our health care is decent, but we don't have any specialists and our "diabetes center" at the hospital is set up for old people recently diagnosed with type 2- they can show you how to test your blood sugar and how to count carbs, but that's about it. I get a lot of help and info offline anymore, and while I know it doesn't take the place of a real doctor, its helpful to know that other people have the same problems and have learned to work around them.
I don't use any of the numbing creams, I just suck it up and make faces when it hurts and if I'm home alone I might say some unchoice words when I get a bad one. It only hurts for the first 30 seconds or so though, so for me waiting 45 minutes for some cream is not worth the saved 30 seconds of possible pain. I know some people use ice cubes to do a quick numbing job but I've never tried it.
I always use the stabbing thing though so I don't have to actually watch what I'm doing. I can line up, shut my eyes and look the other direction... I'm sure it hurts more if you see it go in!

I think its kind of fascinating how you and I are ultimately dealing with the same underlying issue, but have such very different lives and ways of being involved in this....
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MIIFIT's Photo MIIFIT Posts: 70
7/21/09 10:21 P

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Where are you from? We're from Ontario and we have a top-notch clinic less than half an hour away, and the diabetes team includes a social worker. My son being 14 yrs old would NEVER voluntarily seek counselling services at this stage of the game...unfortunately.
You asked about unscheduled site changes...that's how bad this is: if something happens, he has an emergency kit with him at school and I have to LEAVE WORK and go to his school to handle it. And it's not a quick fix because he insists on the emla cream to numb him first. Do you use that? It's great, but takes a good 45 minutes to work. His pump is a medtronic mini med and although it is a great pump, those gizmos that insert the sites are really crappy. I do it manually. The funny thing is that I would never have dreamed I could ever perform medical procedures like this, and look at me now...but the goal is to get him to perform those procedures. I think a site insertion kit that is user friendly would go a long way.
All diabetics have different responses to lows, it seems to me. Many, like you, describe their lows as kind of like being drunk. It's not like that for my kid. He just feels very weak. And he starts to feel it when his sugars are on the downslide, so he can anticipate it before it actually hits. I used to worry myself sick about him going low in the night and not knowing, but so far, his night time lows are rare and wake him up right away.
He's growing like a maniac, and we make adjustments to his pump all the time. He probably has lows three or four times a week, but if I change his ratios, he's too high. Sometimes, he's on his bike or running around all day long, others he's in front of the x-box. When you're dealing with all these variables, it's really hard to adjust accordingly. As you know, lows can hit the day after exercising. He is very sensitive to exercise, and even if he has a snack before and takes the pump right off, you can pretty much count on a low. I hope that as an adult, he will be more consistent in his daily routines; I think that will help him keep his sugars consistent and predictable.
It's so nice to have someone to talk to about this stuff. Thanks for listening. I love your attitude about more fun things to do than diabetes!

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SUPERDUPER26's Photo SUPERDUPER26 Posts: 1,553
7/21/09 1:46 P

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"a thirty year old man is not going to run home to mama for a site change...is he???"
Ha ha, only if you let him! I'd imagine any day now it'll
1. be annoying to be so dependent on his mom
2. get a little embarrassing
3. be hard to explain to his friends why he doesn't do it.
How do you handle unscheduled site changes though? I know I've snagged myself on door knobs and yanked out a site before and somedays for whatever reason it clogs up and I have to change it even if I put a new one in yesterday. Does he know how and just chooses not to?
The lows suck, high isn't a load of fun either, but lows can easily get to a place where you do stupid stuff and other people have to get involved. Its awkward to lose control of yourself like that, and embarrassing to be dependent on other people. At least thats how I feel. The other issue with lows is having to explain without causing undue worrying whats going on and why you are going to sit on the bench right now instead of play the last round or whatever.
Does he actually go low often though or just worry about it a lot? I think my doctor told me if I was going low more than once a week it was time to reassess what I was doing and make some adjustments so I wouldn't have to worry about going low all the time. Worrying about it is one thing, but actually going low is another. When I leave the house I usually check my BG beforehand, and I have my glucometer and a granola bar and usually some juice in my purse. Prepared is good, but if it doesn't make life any less stressful, you're not actually prepared.
Personally, I think a mental health professional ought to be part of all of our health care teams to help us (and our parents) find constructive uses for anger, worry, denial, what-have-you so instead of spinning our wheels going nowhere, we can redirect and find fun things to spend our time on.



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MIIFIT's Photo MIIFIT Posts: 70
7/20/09 7:27 P

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I guess there must be a happy medium between the way your parents handled things and the way I do...my son at the age of 14 should probably be a bit more independent in some areas...like I said, he does better than I do with this--the first year after the diagnosis, he was sleeping like a baby and I was up checking on him every night. He's great with carb estimations and the way he navigates through those pump menus and problem-solves is really remarkable. The biggest issue is site changes--I am the only person in the world that he will allow to do them, so my adventures away from home are limited to three days at a time. I know that in time, he will learn to do them. I mean, a thirty year old man is not going to run home to mama for a site change...is he???
You mentioned emotional crap. I want to learn more about that. For my son, it has always been the stress around going low--he worries about his numbers and picks far too often. He can't go out the front door without picking...can't take a shower without picking...he's afraid of being out somewhere and going low...totes around massive quantities of juice boxes wherever he goes.
I think your experience handling your diabetes from an early age has served you well, but I am sorry your parents didn't take a more active role when you were younger. As much as it sucks, diabetes has taught me a lot, and it's too bad they missed that opportunity to support you.


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SUPERDUPER26's Photo SUPERDUPER26 Posts: 1,553
7/20/09 6:21 P

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Welcome to the team! I know we've got a few other people on here whose kids/spouses have diabetes, so you're not alone!
I'm a T1, diagnosed at age 9, 18 years ago. As an "adult" now (I don't feel very adult-like most days, hence the quotes), I can make competent decisions about treatment and consequences and the physical aspects of diabetes, but the emotional crap that comes along with it is my hang up.
I think its cool that you're still involved in your kid's diabetes. We moved when I was starting 7th grade and the new bus to school came at 645am; neither of my parents wanted to get up that early so at 13 years old, diabetes became "all mine". I got my pump after I moved out, and sometimes its frustrating to me how little my parents know about how it all works (my mom called me the other day to ask if diabetes could eat s'mores, and she doesn't understand why I still have to test my BG even though I have an electric pancreas); kudos to you for staying involved.
Anyhow, welcome to the team, I hope you can find something helpful on here and please hop in if you have any questions or great pump tips!
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MIIFIT's Photo MIIFIT Posts: 70
7/19/09 7:23 P

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Hello
I don't have diabetes, but my 14 year old son does--Type One, diagnosed three years ago. He's on an insulin pump. He's doing great--much better than I am doing, some days.
But I thought I would maybe check in here some days, see what you guys have to say, and try to understand a bit more about what he goes through. I do all his site changes and adjustments, so I've learned a lot about the pump, if anyone wants to ask me anything.

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