Female & self conscious about pump :(

Ok so I just got the insulin pump. I've been taking injections since i was 9 and I'm 26 now. Im female and very vain and have self-esteem issues about looks. Im recently married and now when we have sex I just feel completely awkward, so much so that I feel it just ruins the mood. Having to sit there and stop what we are doing to disconnect this tubing and machine from my body is so embarrassing to me. And when I look in the mirror undressed i can't stand to look at myself with all that tubing. I just feel unattractive. I started bawling crying bc I threw away all my bikinis bc I can't wear them anymore bc of the pump. I just don't know what to do and is anyone else feeling this way? Like a robot? :(

additional resources added by the TuDiabetes Administration
https://forum.tudiabetes.org/topics/how-do-you-wear-an-insulin
https://forum.tudiabetes.org/topics/first-summer-wearing-a-pump
http://www.tudiabetes.org/group/minimedparadigmusers/forum/topics/ideas-for-wearing-the-pump-under-a-dress
https://forum.tudiabetes.org/topics/where-do-you-hide-your-insulin-pump
http://sixuntilme.com/wp/2013/05/23/how-to-have-sex-with-an-insulin-pump/

Do I ever feel like a freak with all this tubing and tape? YES!

But, it comes and goes, and certainly the first few months were the hardest, because it was all new and I didn't feel confident in my pumping skills. Now, I can bolus without looking, change a site in the dark, and I feel like my pump is just a part of me now, instead of an outside machine. It didn't happen overnight, but eventually the whole thing of it will get easier and with that will come better acceptance and less mental drama and awkwardness!

In the mean time though-

Realistically speaking, all the benefits that you gain from a pump are only in exchange for about 1 square inch of skin. And that square inch can be just about any inch you decide you want it to be, so if you don't want to see it front and center every time you get dressed, move it! Check the body map on the omnipod website, every place they say you can put a pod is a place you can put a regular infusion set too.
It turns out (and this is after several years of trial and error and discovery mind you) that I think things on my belly look way more creepy and "medical" than I want to feel. A thingy on the back of my arm, on my back/side muffin top, and even on my thigh all feel less clinical and help my... device acceptance level... to an appropriate place. Its not full-proof, but there's just something about putting stuff all over my belly that is a turn-off to me. Maybe exploring alternate sites can help you too?

As for sex, unless you married a real jerk, the awkwardness is something you made up all by yourself. In my limited experience, man is so happy to have to the option to see skin and have sex that little details like an infusion set or tubing barely register. And when it does register, the string of thought is something like "That piece of plastic on the belly of the girl under me keeps said girl alive so we can keep doing this. I like plastic." I'm paraphrasing and making a small joke out of it, but I've asked my guy if it ever bothers him (loaded question, yes, but he's not opposed to giving me unpleasant answers if they're true) and he said on rare occasions he's afraid he's going to get caught in my tubing and yank it out and that will hurt me (really hard to do, by the way), but otherwise he's happy that I can stay alive with just that small piece of plastic.

Also, with time it will get easier to disconnect without looking, you'll have it down to about 1/2 second so there's almost no time (for either of you) to notice that you're doing anything and it won't take any thought and certainly not any stopping and sitting to disconnect. Additionally, and this is my choice, you can just stay attached. You've got lots of tubing and I can almost 100% promise that it at least won't be in the way physically.

What to do now though? Recognize that a pump is a big change, and its okay to be upset by it even if it was your idea in the first place. Its okay to grieve that square inch of skin, and all that it stood for. You can try making your site and pump more fun: I know there was a place that made fun colored stickers to go over the infusion sets, sort of like a tattoo... I saved them for vacations so I felt 'fun' instead of 'funky' when at the beach, but I can't remember what they were called. Someone online was posting pictures of their decorated pod, I don't see why you couldn't also decorate a regular infusion set and then its a little more fun to see. Also, some of them come in color options, and that (in my opinion) takes some of the sting out of it visually. You can also find skins for your pump, add pink zebra stipes to liven it up a little, or maybe a sea of fish? (I think it was skinit.com that had the biggest selection of skins last time I was looking.)

Lots of ideas you didn't ask for, and none of them actually address your claim of being vain and having self-esteem issues, but hopefully someone else can chime in on those (I just wasn't given a body worth being vain about). To reiterate what you did ask though, you are not the first or only person to feel like a cyborg, and I can promise that it will get easier and less awkward over time. Hang in there!

what was your reasoning for starting a pump, was it to get better control? if so, isn't that more important then what it looks like? yes, tubing can be cumbersome...but I guess you have to determine what works best for you and what your goals are. if you were doing well on MDI's then maybe consider going back. 'intimacy' can be tricky (i'll agree), but....you and your husband, your partner, will get used to it. he's your husband, no need to feel embarrassed about it. I would imagine he would support you and want you to have the best, healthiest control of your type 1, no?

Thanks so much for the replies i really appreciate it and it means a lot. Honestly I don’t know a valid reason for the dr putting me on a pump. I moved 7x in 4 years and i have yet another endocrinologist. This one i am seeing is very stern. I have very tight control of my diabetes and have been ever since I was diagnosed. All my A1C’s have been 5.7 or lower. Honestly I feel I was doing just as well with the injections then with the pump. I see no difference. Im still getting bout the same #'s.

reminds me of I blog I recently read on the subject

http://sixuntilme.com/wp/2013/05/23/how-to-have-sex-with-an-insulin-pump/

It's you, not your doctor who should determine treatment. If you feel that you were happier on shots than the pump than that's a choice you might make. You say your endo is "very stern", but remember he works for you and you are the person in charge of your D!

As for your self consciousness: I'm much older than you but I think I would have also found it hard to adjust to some of the issues you talk about when I was your age. I agree with the others, though, about making your pump pretty and about the fact that your husband, I'm sure, loves you and it doesn't bother him half as much as it bothers you (ask him!). I don't know how Medtronic works, but with my Ping I could disconnect in a couple seconds without even looking. Forgive me if this is too personal: I teach Human Sexuality so I'm used to talking about personal things! But perhaps you could make disconnecting from your pump a seductive thing for either you or your husband to do, just like undressing is!

Wow you really are the perfect person for me to talk to!!! I mean when it comes to sex im talking “akward”!!! He’s always scared he’s going to touch it bc I been having problems with the white sticky pad just falling off for no reason. it must be my skin type. And it’s like I literally have to turn all the lights on because I can’t see and then I have to unscrew it which im trying so hard to be careful because usually the patch just falls off! Then the mood is completely ruined cause…10 min later its finally unattached and it has completely killed the mood.

Wow what a wonderful blog!!! Thankyou!!! I bookmarked the page!!

Thank you for the long response what U wrote is very true. It’s not that he is uncomfortable, its that my patch is always seeming to just “fall off”. It must be my skin type. But I’m very interested in the website you were talking about that has the cool looking designs instead of just boring white lol!!! If you ever remember what site that is let me know cause that would be great. Thank you again! Very helpful!!

When you put the patch on, do you cover it with tape? When I say tape, I mean an IV3000 Hand patch or Tegaderm film that you either buy with a hole in the center, or cut a hole into it so that it fits around the little plastic thingy that the infusion set hooks into. Because if you're not doing that, this could be the solution to your problem — I don't know ANYONE who can keep one of those sites on without tape, but I do know that it is a whole lot harder to rip a site off WITH the tape than it sounds like from your experience. Also, are you using the IV prep wipes to clean the site before you put a new one in, or are you using alcohol wipes? If you're using just straight alcohol wipes, that could be causing problems with the adhesive too.

I am not trying to be patronizing, but sometimes the diabetes educators forget to tell us stuff that they think is obvious... like, "use tape"!

No you are totally right!!! My trainer was actually horrible! She literally hooked the pump up on my body & gave me some samples & then sent me on my way & never checked back up on me. I have been desperately trying to find the right basal rates and this is so hard because with all the hormones involved in us girls my insulin needs change from a day to day basis. But to answer your question: no i have been using super glue!!! Horrible i know but I tried everything at the drugstore & nothing worked so i just became frustrated and began using super glue. I actually called the medtronic help line & they just sent me a sample tegaderm to use in the mail this morning so im going to see if this works. Thanks so much for the advice!!

Groovy patches for adding color to infusion sites

Example of "bling"... I don't know why you couldn't stick these on a regular pump too.

Pump skins for Minimed models, but I'm sure there's others out there for other brands.

Site sticking is a whole 'nother isssue! These are all available on Amazon and most are available through Minimed so your insurance gets a chance to cover some of the costs!
There's bunch of kids of tape to put on top of the site (Tegaderm & IV300 are pretty common).
There's sticky stuff to put on your skin to help the tape stick (mastisol, skin tac, IV prep and even spray deodorant can help).
Then, if the sticky is too sticky after either option, there's adhesive removers (detachol, uni solve).

Alcohol wipes and most disinfectants aren't used by real people, they're only promoted by trainers/medical people who don't wear pumps in real life.

And, your skin in different areas has different stickabilities- what works on your leg might not work on your belly might not be needed on your backside... just some more trial and error to throw at you, but it means there's more options too. : )

First of all, GREAT WORK in keeping your A1c's in the 5's..that's fantastic, especially on MDI's (what's your secret..ha??). Your endo, any endo, should be praising you. YOU ROCK! Secondly, just tell them no. I agree with Zoe, it's your body, your disease to manage and it sounds like you're doing great. Going on a pump is not an easy process, it's totally different and if they're not even following you, helping you..then..forget it. Do what you're comfortable with. If the pump works for you or you want to really put an effort into it, tell them (your CDE, whomever) to help you through the transition because yes, figuring out basal rates is indeed very challenging. Good idea too to tape it down, as suggested. There is always the Omnipod, but pros and cons, I suppose. My husband was the same way with my pump and my CGM too, scared to touch it, afraid it would come off, etc...you two will work through it, make it fun..ha!

Actually, Elizabeth, I've never needed to use any kind of tape, but it seems like many do. I can definitely see how what you describe, Envisage, would be a mood killer! It's good you ordered some tagaderm because it sounds like you need to solve the problem with the pad falling off because it is making you both nervous! Then once you do that I would suggest having your husband get comfortable with it and realize it won't come off so you can both relax.

Yes u r right. Honestly the super glue is working really well so far & they shipped me some tegaderm & the smaller catheter & shorter tubing so it won’t tug & I tried it today and its working much better already

Thankyou I really appreciate that. I think that when I see my dr aug 1st I’m going to demand for a back up of insulin for days where the pump isn’t feasible. Like im going on a bus trip to the casino this sat & we are going to be at the pool at the bar all day long. I can’t wear a pump for that!! Lol thats funny about your husband too. I think he is just worried he is going to break it or hurt me or something which sucks but I think eventually he will get over it i hope! You know how I keep my a1c low? Basically I went to nursing school and all i saw was 1 complication after another for diabetes(kidney failure, peripheral artery disease, amputations, infections, blindness, etc…) and it literally scared the heck out of me!!! And I have a big medical background and I have a personal theory that “I’d rather be low than high” and its true. You build up a tolerance to it. I still feel when Im low but I just go grab a few glucose tablets: Im not scared to be low. I also test 8-10x a day! The reli on meter and test strips at wal mart u can buy without a rx and are only $35 for 100. What a deal

Curious, while you were on MDI, did you split your basal injections, levemir or lantus? how much and when was your split dose(s). i've been on pump (both tubed and PODS) and went back to MDI but will be starting pump again (PODS) soon cause I can't get my basal doses (levemir) correct! I too would prefer MDI (never got stable on pump but I didn't try for very long), it just seems easier taking shots but I can't seem to get my numbers stable. You may find, however, you do like the pump. Yeah, I test at least that, more like 14/day. My A1C's have never been above 6.4 but it's a lot of work with a lot of injections, through out the night too for me and it's getting more difficult daily. Complications are indeed horrible, effects everything..ugh!

I have been a diabetic since I was 2 years old. I have always exercised and taken pride in how I looked. When I started on the pump I felt kind of like you. My husband didn't care about the pump when we were going to be intimate. I just took it off and we did our thing and then I put it back on. We live on the beach a lot of time and trying to figure out what to do with it in a 2 piece suit was such a pain. My doctor and I discussed this and now I take a shot of Lantus take my pump off for about 3 hours and I'm pretty content.I've been on the pump for 6 years now and am going to talk with my endocrinologist next month about taking pump vacations sometimes when at the beach cause I don't like having the little cover over my pump site showing so much. I try as much as I can to put it in an inconspicuous spot if I know I will be at the coast. One of the hardest things for me was dresses. So, I bought these little pump holders that fit like a garter up on your thigh. Some of my dresses won't accommodate a pump attached to my bra. I attach it to my gym shorts/skort or my bra strap if I'm spinning. I had problems with too much moisture messing the pump up when I went to spin class and was sweating like crazy. Talk to your endocrinologist before doing the lantus insulin thing though. The pump can be a big pain, but honestly most people tell me they don't notice it at all when I am clothed or they think it's a cell phone. Give yourself time to get used to it and go to different diabetes websites to get ideas about how others handle the same things you are trying to cope with. And talk to your doctor, mine gave me so much help when I didn't feel like I could cope with my pump. Good luck :)

Are you using any type of bath soap or body lotion that might prevent your patch from sticking well? I wipe down the area I might place mine in/on with alcohol. The most time I've had problem with them falling off is when I'm on a float on the ocean.

Hello again! Yes I was taking 16 units of langue twice a day once before breakfast & once before dinner. And then fast acting with all meals and sometimes in between for correction. With meals i was looking at anywhere from 10-16 units of novilin fast acting insulin each time & I would always give a correction shot if my blood sugar was greater than 150 2 hours after eating.