Finding Someone Else Who Gets It

Not long ago, I went out with some friends after work.

This is part of a guys-only group we have, where our ladies aren’t around and we get to just gather with the guys and talk about anything and everything in life that we might want.

With the beer flowing and good conversation happening, one friend shared a story about the stress he and his wife were experiencing. All relating to the heartaches of infertility and all that comes with that.

He wasn’t even talking to me, I just happened to be sitting next to him and was finishing up a conversation with someone else. I heard him say “infertility” and “sample,” and my mind suddenly put all its focus on that other conversation. While it was mostly between them, this chat wasn’t a closed off 1-on-1 conversation and really others could join in if they wanted to. That wasn’t the best moment, so I waited patiently and offered some nods and looks of sympathy without saying a word.

Then, came the moment.

“I understand. We’re going through that, too.”

I’d only recently met this friend a month or two before and had never before met his wife, but suddenly we had a bond. He is not in anyway connected to the diabetes universe, but that story he shared connected us in ways that we just hadn’t expected.

At that point, we ordered another round of beers and delved into another layer of conversation with “someone else who gets it,” another guy that neither of us expected to find that evening out after work.

We shared a number of things, including how we feel when so many of our friends and people on Facebook are sharing their happy baby announcements. Of course, we’re happy for them. But our hearts also hurt, and we know how tough it will be for our wives who are feeling this too. Tears are many, but sometimes we have to temper our own sadness and heartache for the benefit of others who deserve every smile in the world at that time.

Sharing Our Infertility Stories

As mentioned before, this is on me. We have pretty much been told that my diabetes-damaged body is to blame.

This has been an issue I’ve been struggling with on my own, for the most part. Sure, I have my wife and doctors to talk to. There have been a small handful of other close friends, all women, who’ve also heard this. But really, I have been on my own — particularly when it comes to the diabetes component of this story.

For the first half of 2015, we went through four IUIs. That’s a darn expensive process in itself (compared to all-natural).The first was hopeful and we were told all looked great, but just didn’t materialize. The second wasn’t a good enough sample. The third and fourth evolved into fearful, disappointment-expecting experiences that were overly stressful. And even felt like it was becoming routine.

We decided to take a step back and assess options.

The second half of 2015 and these first months of 2016 have been a time of de-stressing for us. We have worked hard to not dwell, to enjoy each other’s company and just focus on everything else beyond baby-making.

It’s still been on the mind, of course. How could it not be?!?!

Now, I have this other local friend who’s experiencing this. I’ve not yet shared this with my wife, and there’s no particular reason for that. Just trying to not dwell on this as much as possible, and don’t want to bring her mind back to that heartache and disappointment that we had so much exposure to last year.

Maybe, it’s a way of trying to shield her. Or myself. Who knows.

At least now, I know of someone to talk to about this struggle.

Kerri’s Story

This bar chat comes to mind as Kerri Sparling at http://www.sixuntilme.com shared her own story of “Silent Infertility” — something she’d kept offline until the happy announcement that she is pregnant with her 2nd child.

That is very happy news, and many in the diabetes blogging community have voiced support in comments and well-wishes. They’ve even shared their own stories of struggling with infertility, past and present.

All of that hit me hard.

Reading that blog post, I couldn’t stop myself from crying. That was particularly odd moment, as I happened to be sitting in a Starbucks reading this for the first time and had to deflect some raised eyebrows and looks of concern.

None of the comments were men, as far as I could tell from the names displayed. That tugs at my heart.

Because clearly, men struggle with this issue too and often we just can’t find anyone to talk to about it.

I am still torn up, guilty that it’s “my fault,” and I am trying to remain optimistic about the future. I am relying on my faith to help me through all of this.

Thankfully, there’s another guy to share this story with — even if he doesn’t have a faulty pancreas to blame.

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Diabetes Gadgets and Man Parts

An innocuous question came my way recently, out of the blue in a conversation about anything other than diabetes.

“Does your insulin pump tubing ever get caught up in your man parts?”

Well, yes. It does. At times.

As you can imagine, it’s not a pleasant experience. One that catches you off guard, makes you pep right up and stop everything you’re doing to make sure you don’t move a muscle the wrong way and make everything go from bad to worse.

It only takes a moment (as the Music Man tune goes), but it’s a very important one with a lot on the line. This is, the Danger Zone (cue Top Gun soundtrack here).

DANGER! DANGER! DANGER!

STOP WHAT YOU’RE DOING AND… READJUST!

Insulin pump tubing is not evil, by any stretch of the imagination. But when you’re a guy and you tend to tuck your tubing in with your shirt, and wear the pump on your belt, these issues are bound to surface. Especially if you roll with the longer tubing lengths.

Thankfully, I have never had anything more… uh, unpleasant… occur when the tangling happens. The noose is tight, but catastrophe’s prevented.

I’m sure the future kids are grateful, just the same.

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A D-Wife Poses a Question…

The other night, I was scanning some of my favorite diabetes blogs. There are so many, and it is simply amazing at how many people are online writing about their lives with diabetes.

One of them was a site called DiabetesMine, and the post that caught my eye was a Dear Abby styled advice column focused on diabetes.  It’s called “Ask D’Mine.” Written by a guy named William Lee Dubois who has type 1, and seems to know quite a bit from the medical side since he works in it and has written some diabetes books.

Anyhow, the featured question of the day at this “Ask D’Mine” column was from the wife of a type 1 diabetic in Australia, who says her hubby was having issues in the bedroom. Here’s her question as I read it there:

Lani, type 3 from Australia, writes: My partner is a type 1 diabetic and we have two kids. He is 24, a healthy weight, doesn’t exercise much but his diet is good. And we have “cuddled” twice this year. This morning we tried but he couldn’t… Keep up? So long-term loss of libido and ED (erectile dysfunction) makes me worried that there’s something foul afoot. His sugars were checked and they were fine, but he ate something anyway and we were really into it, but it just didn’t happen. He got a semi and then nothin’. He’s very reluctant to speak to a doctor, he is mortified, and doesn’t like discussing this stuff anyways (I don’t get it, it’s just anatomy) but I’m really concerned that he may have permanent damage somehow, or something he needs to fix but won’t. All Dr. Google can give me is stress, or possible nerve damage. TMI?

Reading on, you can see that Mr. Dubois asked additional questions and got this out of Lani —

Lani’s T1 was Dx’d at age 8, with typical control until the “screw-it” teen years when he had 2-3 bad episodes that landed him in the hospital. At age 19 his main squeeze Lani, our Down Under correspondent in this case, “fell pregnant.”

At this point, as a 19-year-old father, he cleaned up his diabetes management act. Lani tells me in the five years they’ve been together, he’s not had one trip to the hospital. She also reports—because I asked—that the sex “was fine” pre-baby, but “died off pretty significantly after our first.”  They now have a second child, as well. She says that sex over the last two years has been “very rare,” but that when it happens he’s never had any issues with getting and holding an erection. And lastly, she does concede that “stress management is not his talent.”

From there, Mr. Dubois goes into great detail about what he thinks is the culprit. There is a glaring disclaimer at the bottom of the column that says what he’s said is NOT medical device, which I found interesting… but, still, what Mr. Dubois writes seems pretty spot on as to what Lani’s husband might be experiencing.

What raised my eyebrow on this whole Q&A was the last part of Lani’s question to Mr. Dubois — a note that boils down to what I think is a big part of why these issues are so often not talked about and it’s so difficult to find other men with diabetes sharing their stories online.

“He’s very reluctant to speak to a doctor, he is mortified, and doesn’t like discussing this stuff anyways (I don’t get it, it’s just anatomy)…”

That’s huuuuge (no pun intended there, for the most part). Of course, he’s reluctant to speak about!!!! Men will be mortified about these things, especially in those early to mid-20s when we’re supposed to be at our prime. These aren’t issues any guy wants to face, let alone admit if and when they might start happening. And her comment “I don’t get it” strikes me in the gut…

Maybe, part of the reason Lani’s husband doesn’t want to talk about this with her, aside from the fact that it’s embarrassing and also scary in that it’s probably tapping into deeply rooted fears about diabetes complications and life-altering affects that he’s heard since being diagnosed at age 8, is that he understands she doesn’t get it.

For his part in the “Ask D’Mine” column, Mr. Dubois advises that some marriage counseling is needed to improve communication. I happen to agree. But also, I think it goes beyond just the “sex after 2 kids” issue and possibly inadequate stress management… I tend to think it also hits on how we, as a D-Community, need to raise these issues up as more of a conversation point whenever complications are mentioned.

For me, those issues did start surfacing about the same time. Not noticeably or very often at first, but then as the years progressed, it was more regular and clear that something wasn’t functioning correctly — often when my blood sugars were high. In my world, though, I didn’t have kids earlier in life and so by the time I got to where I am now, we’re dealing with this issue at a more critical time in the family-starting process. And it’s limiting.

Talking about this with my wife was a problem for years. I tried to hide it, ignore it, play it off as much as possible. Until it started hurting our marriage, and it became even more important to talk about these things, recognizing what this all means and how we might need some professional guidance from reproductive endos and fertility experts.

I am glad we are sharing and communicating more openly about this now, and I am also glad that Lani reached out to Mr. Dubois for guidance. I also hope that Lani’s husband finds the courage to talk more with his wife, and that Lani herself can take an understanding approach to seeing this from her husband’s POV, no matter how much she may just think it’s an anatomy issue and nothing else.

Sorry, Lani, it’s a lot more sensitive than that… Hope you can see that as your family moves forward.

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Guy Talk on Diabetes and Sex: What Google Fails To Tell Us

Dr. Google came calling the other night.

The search was simple: “Diabetes and Sex.”

Nah, this wasn’t for scientific study, medical knowledge to cram for cocktail party chatter, or educational know-how to diagnose myself or others. I was just curious about what the results would be.

From the start, I kind of guessed what the results would be and maybe it would serve as some sorta justification for writing here on this blog.

Top results were as follows:

  1. Sex and Diabetes: What You Wanted to Know. An informative and handy article from Diabetes Forecast in November 2012. Good stuff in there, and it was very easy to understand. And it made me happy to see that there was a sub-header of “Him” that broke down the guy-specific stuff before delving into the more common “Her” talk on D and Sex.
  2. Diabetes and Sexual Health in Men: Understanding the Connection. An online read from the ever-esteemed Joslin Diabetes Center in Boston. So yeah, the second-top result from that search came back guy-focused. I can only assume that’s because us guys are more often the ones searching, instead of talking about these issues? Hmmm. While happy that Google recognizes the need for this kind of online read, and it’s high-ranking in SEO, this Joslin piece is pretty… um, limp. Pretty much dry medical info that you could guess would come from any doc or reading a medical textbook.

Really, that’s all that need to be mentioned from this initial search. Because the rest were all about the same — mostly dry, non-personal information that really doesn’t get at the psychosocial aspects of this whole conversation and need for peer-to-peer support. One result focused on women’s sexual health. A couple others mentioned sexual dysfunction. There was a federal government page through the National Institutes of Health (see also: dry medical lingo and stats).

Oh, and I also added in a quick search for “Diabetes, Sex, Men” and found pretty much the same crap… including this March 2015 article written by two medical people at a site called HealthyDay, which has much of the same. Even the ADA has gotten in on this online info, creating a whole “Men With Diabetes” hub that then goes into the medically-reviewed and approved info on sex-related stuff.

On their face, the above results were probably all full of important and well-researched medical expertise. And for everything there,  I could see the words included in the little descriptions on the Google search page, making me not want to even click over to read because it wasn’t worth the effort.

What this tells me: People are searching for these terms and topics, because they’re important issues in life. And it’s easier to search online for an answer than to consult your Significant Other, dad, neighbor (or anyone you actually know) about these intimate and delicate matters.

But the real conversation isn’t there, isn’t ranking in searches, and isn’t crossing into people’s reader feeds or search pages.

And that bothers me.

The reason why that isn’t be ranked or talked about much online is also the reason it bothers me so much — because, according to even the Diabetes Forecast story with a #1 Ranking on the topic, it’s a huge issue that most diabetics and doctors don’t even feel comfortable talking about. The first lines of that article quotes a 2010 study in the journal Diabetes Care that found “only about half of all men with diabetes and 19% of women with diabetes have broached the topic with a doctor. And, truth is, many doctors don’t feel comfortable prodding patients for details on sexual function.”

I know it’s true, without even consulting studies and stats. I’ve put off talking about these issues for a long time in my own life with those people closest to me. Years ago, I ignored them and didn’t share with my doctors that these issues were materializing in my life. Yes, neuropathy was popping into my world, but I either bypassed the below the belt talk or just downplayed it as “nothing out of the ordinary to be concerned about” when asked during my endo appointments, as they went down the checklist of questions.

That’s my own damn fault.

But it was part of a bigger issue of not talking about these (and other) diabetes-related issues, including mental health. And in more recent years, I’m glad to have started taking these more seriously and recognizing that they need to be topics of conversation — with my docs, and in my house.

And maybe even, the Diabetes Online Community.

So here we are.

For the record, if you add in the word “blog” in the Google search for anything on diabetes and sex, you will actually come across some more personal, real-life talks about this kind of stuff. Not the tougher, all serious, guy-specific stuff, but good places to read anyway.

How To Have Sex With An Insulin Pump

Diabetes and Sex: When Hypoglycemia Gets In The Way

And even this one at dLife that I’d describe as “less-personal than a blog, but more handy than most other posts.” It’s written by some well-respected people in the medical arena who know what they’re talking about, and while much of it’s the same BLAH, it does have some good practical tips and tidbits to keep in mind when talking about this complicated sexual health stuff.

No, I didn’t venture into any forums because none particularly stood out from my Google searching… and I wasn’t on the hunt for those needle-in-a-haystack chats. Just easy reads where I wanted to find that real talk… but I really didn’t, for the most part.

What would I add, if I could make my own Google-ranked post about diabetes and sex as it relates to men?

Well, fuck. Let me think.

FortuneCookieInBed

My lower body nerve damage has traveled north through the years. Yes, I have ED. Sometimes I wish I was in my early 20s again, but get sucked back to the reality that I’m in my 40s now and it’s not as easy in bed as it once was.

Not only because of the long-term complications side of the coin, but just the regular diabetes management aspects.

I know that if my blood sugar’s High, into the 200s or even above that, the prospects in bed won’t be that good. When I’m lazy and don’t count carbs well enough or don’t respect my insulin pump site changes with insulin on board… those higher blood sugars mean trouble.

Don’t even get me started on Lows that bring with them a wave of confusion and inability to perform, especially at the Dexcom beeeeeping levels below 55 mg/dL.

There is all the other coordination about mood-setting and making sure all the stars aligned aside from diabetes, sure.

And sometimes, I just don’t care about which arm my Dexcom sensor is on and where my infusion set is located. Ripping them both off is fine, in the heat of the moment. Except when I don’t disconnect my insulin pump beforehand, and it falls off the bed and rips the site… yeah, ouch.

Hey, this is all real life when it comes to diabetes and sex, right?

Advance planning for sex is deflating. And taking a Sudafed pill takes a lot of the fun out of the experience leading up to it, and serves as a reminder of how broken I really am. That mentality brings with it all kinds of emotions about adequacy and disappointment, and really that mental chess game has all become part of the planning process.

I can whine about these things all day until I’m blue in the… face. While it really doesn’t serve me any purpose other than venting, maybe what I’m saying will let someone else know they aren’t alone in experiencing these problems or feeling this way.

“Me too,” right? (thanks to those who already commented with that train of thought, btw)

In my own bedroom, what it comes down to in the end is getting my mind together to not let the diabetes complications and blood sugar challenges win out.

I wonder how Google will interpret this post.

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This Is Me (An Addendum to My Diabetes Secret)

Not long ago in June, this post appeared on the site, My Diabetes Secret.

“Father’s Day was tough, because we’ve been trying for a long time, and nothing. I’m not a father even though I want to be. We have gone through IUI and nothing. We can’t afford more. And it appears that the motility-impacting culprit is diabetes, and the wonders of nerve damage. It doesn’t help when everyone else seems to be having kids, and my parents won’t shut up about it – especially in front of my wife, and it just breaks our hearts even more. I’ve accomplished many of my dreams in life, but this one… may have been stolen from me. And I feel mad that it’s a topic more men aren’t able or willing to talk about publicly, so we feel very alone in dealing with this. Yet, I’m not willing to share this publicly, and so I feel like a hypocrite.”

I saw that this came up at the recent Diabetes Advocacy MasterLab held the week of the Children With Diabetes “Friends For Life” conference held each year in Orlando.

That’s me. I wrote that.

No doubt, you can see that things aren’t OK as it relates to this part of my life. I’ve been married to a great woman for many years, and over the past few we have been trying to start our family.

A year or so ago, a reproductive endocrinologist told us that I was likely experiencing retrograde ejaculation thanks to long-term diabetes — you know, the wonders of nerve damage down there. Basically, this just means the pipes are somewhat crossed and instead of my swimmers flowing out the way they’re supposed to, the nerve damage has tightened up one end and so they’re swimming the other way, back into the bladder.

The irony here is amazing, since swimming was a part of my world when I was younger.

Seems God has a sense of humor, at my expense.

So, we’ve tried and spent some money on fertility treatment to no avail. I feel so guilty, so ashamed and embarrassed and at fault, like I’m stealing away my wife’s deepest desire right now to have kids. And it’s also one of mine… but yet, it feels as though diabetes has stolen one of my dreams.

It’s really tough when all you see posted online from friends and family are the “happy news” tales of people getting pregnant, or having new kids. Or posting pictures of their kids’ smiling faces. I really do love seeing these, and am happy… it’s just bittersweet at the same time, with all that we’re going through with not being able to have kids so far.

And from the diabetes side of the fence, as a guy with type 1 who wants to be a dad but appears to not be able to, that’s even more challenging. Especially when all the “infertility and diabetes” searches and info you come across online is about women with diabetes. And all the challenges they may face. The men are just a footnote, it seems.

None of this stuff is easy to talk about, and no one is sharing their stories online. Even in forums, it’s tough to find any specific men with diabetes sharing these stories.

One that truly stands out was posted on a blog in 2014, when “Mr. Diabetes Dad” Tom Karlya shared the story of Benno Schmidt (a news guy who was the featured face on dLife TV for awhile). While it’s not exactly the same issue 100%, and I’m not looking at a penile implant (at this point in my life, at least), the similarities are there with our stories.

When I first listened to Benno’s story, tears came to my eyes. And it happened to be in the middle of the night, and I sobbed. My heart so needed to cry about this, and so there I was sitting in my living room with headphones in and tears running down my face.

Later, once I collected myself, I thought about how brave Benno is for sharing such an issue that was so very personal. I can’t commend him enough for standing up and putting himself out there, with so much courage.

Here is Benno’s story: http://www.edcure.org/real-patient-stories/benno/

That courage of “putting my name to this story” is something I just can’t find at the moment… even though I so want to find others to share these stories with. To just not feel so alone. I’ve shared some of this a couple times recently at groups, and both times have been emotional releases and it felt so good to share this. One of them did have some fellow guys with T1 for many years, and it was a truly safe place to share and find that support.

And while all of that’s great, and I do hope more of that can materialize, it doesn’t take away the hurt and pain and stress this whole experience brings for me.

I don’t know what the future holds, and we’re giving it a break on the fertility treatments for now. Mostly, because it’s just emotionally exhausting and stressful, but also because it costs so darn much. And with not-positive results so far, we don’t want to keep throwing money down the drain if it’s not going to lead to anything.

We’ll evaluate our options and try naturally, and that just means I’ll have to cope with these mental demons inside my head that scream “FAILURE,” “INADEQUATE” and “DOOM” and try to see the light.

All I know is to basically just practice what Finding Nemo preaches: Just Keep Swimming (which again, strikes an ironic note).

But hey, Nemo and his Dad did find each other in the end, so… there’s that.

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Entering the Diabetes Cave For Men

Hey, everyone.

Welcome to the Diabetes Man Cave, a virtual sanctuary where those of us of the male persuasion who are living with diabetes can hopefully find a place to share our stories about what’s getting to us.

There are so many resources for women with diabetes out there, everything from their own Diabetes Sisters group to focused female-only sessions and discussions at local and national conferences. All of that is needed and it hasn’t always existed, so the fact that it’s so talked about now is great.

On the other side of the gender coin, there’s nothing like that for Men with Diabetes.

Sure, you can find guys with diabetes all around the Diabetes Online Community (DOC), and there are some inspirational and real-life stories being shared out there.

But there isn’t a Diabetes Brothers, so to speak, and that’s probably because these issues are more difficult to talk about even amongst our own, since so many of us just don’t share in the same way women do.

So, maybe this can be a place. Grab a beer (or coffee or whatever you may want, depending on the hour) and read on.WelcomeToManCave

And no, you don’t have to have a “Man Card” or special pass to be a part of the discussions here. This is certainly going to be a place for me to vent and share my own stories, but being a WordPress blog, all are able to see what’s being written. So, hello Ladies and Parents and Diabetes Overlords who may be visiting and reading along, too.

For introductory purposes, here’s the deal.

You’re not going find my real name here. That’s because this isn’t something I am comfortable sharing online with these issues, because they are very personal and not something I’m comfortable letting everyone tie to my name.

But that aside, this also isn’t about just me. It’s about these issues, and the larger point of how so many men who may be experiencing these, just don’t share because they aren’t comfortable talking about them.

So, here’s the place for me, at least, to do that.

What is relevant is that I’m a guy in my early 40s who has been living with Type 1 since I was a little kid. As a teenager and in my early 20s, my blood sugars were shit. And I didn’t do well in taking care of myself. These are the years I really regret, especially as I got into my mid-20s and started developing some complications, and entered into marriage who a great woman who is so very supportive and understanding.

We have wanted to start a family for the past several years, and that’s where some of these guy-specific issues have come into play.

Back when we were first married, I think it was an unconscious truth that I was afraid to have kids and that’s not something I was actually sure about — mainly, because of the fear that I’d pass my diabetes on to another generation. But eventually, we talked through this and it became something I really did want. Even if we had kids and one or more went on to develop T1D, that’s something we would get through. After all, it’s the 21st century and you can pretty much live successfully to old age, with diabetes.

Once we started trying — sometimes off-and-on, and other times more actively — we realized this wasn’t going to be as smooth a process as we’d hoped. I saw the continuation of ED that I’d observed at times before, and the psychosocial aspect of this was certainly a factor in how often we tried.

As time went on, I felt more and more guilty. To blame for this not happening, and likely a result of my diabetes management during my teen years.

Sometimes, we just didn’t get into bed and I’d find an excuse or sleep out on the couch, or even work late in to the night — just to avoid the embarrassment and burden of having to face this inadequacy.

I haven’t been good at talking about these issues, and that just added to the stress.

We eventually consulted a professional for help, and he determined that the culprit was, in fact, my diabetes. Retrograde ejaculation, as it were.

And that brought on more conversations and planning, about how we’d go about starting a family if this roadblock stood in the way.

That’s where I’ll leave this for now, without getting into more detail — that can come later in future posts.

But, I will say this: I feel very isolated in this struggle.

Yes, as mentioned up above, I have a great wife and we can talk about this. But there are times when I want to find others “like me” who’ve gone through or are experiencing this. Not my doctor. Not my wife. And it’s certainly not something I am comfortable broadcasting to the world in today’s age of social media sharing.

In a Diabetes Community where we so often tell each other “You Are Not Alone,” I certainly do feel alone.

I’m hoping the D-Man Cave can help remedy that, to some extent. Because I don’t want to keep this in anymore, and I don’t want to feel so alone.

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