What They Don’t Want to Know
Today’s D-Blog Week Topic is What They Should Know: Today let’s borrow a topic from a #dsma chat held last September. The tweet asked “What is one thing you would tell someone that doesn’t have diabetes about living with diabetes?”. Let’s do a little advocating and post what we wish people knew about diabetes. Have more than one thing you wish people knew? Go ahead and tell us everything.
I’ve shared a lot of personal things here, but there are a few things I’ve skirted or glossed over because it all seemed to fall squarely into the TMI pile. The problem with that is those other people who have diabetes and have dealt with similar problems feel just as alone struggling with the awfulness that diabetes can deliver as I have, and the people without diabetes get the edited version, which says something because I’ve shared a lot. Buckle you seatbelt, because here are some of the more unpleasant problems that life with diabetes can offer.
Diabetic Mastopathy: I’ve actually written about this before, and all things considered, I’m quite open about it, but let’s start at the top and work our way down, uh, literally. My boobs are not exactly soft and squishy the way they’re supposed to be. There’s a soft squishy layer, but under that the breast tissue has solidified. When I developed diabetic mastopathy at age 28 in the first breast, they initially thought it was cancer because the hard pea-sized lump became a hard plum-sized lump in all of 6 months. They did a lumpectomy, taking out a decent chunk of tissue because they thought it was something malignant– goodbye barely a B cup, hello A cup. Thankfully, the biopsy showed it was totally benign. When I noticed a hard lump in my other breast three months later, I had another surgical biopsy. They took less tissue, but it’s not like I had a surplus to donate. That biopsy confirmed the same diagnosis. It’s affected the way I feel about my body. The incisions were around the areolae (yes, I totally had to look up the plural), and the scars have healed nicely, but they’re still there. I’m married to a total boob guy too, which is a bummer for him, although, clearly, it wasn’t a deal breaker because here we are. Buying bras is discouraging and depressing because B cups are a standard size, but lots of styles aren’t made in A cups, and when they are, they often have an inch of padding in them. Yes, I wish mine were bigger, but I’d rather wear my girls naturally than wear a bullet-proof bra. I don’t always feel self-conscious about my boobs, but the surgeries and having diabetic mastopathy has affected my self-confidence, so I don’t feel as good about them as I once did, and as I hope I can again.
Yeast infections: This is a common problem for women with diabetes. Yeast feast on sugar, and when blood sugars are high, the kidneys filter out sugar as best as they can. That sugar, along with other wastes filtered from the blood by the kidneys, gets excreted in urine. Just because of the magic of female anatomy, when we tinkle, sugar gets on our lady parts, and this can be a smorgasbord for yeast which live naturally in the body, but given the opportunity, will multiply beyond normal levels. Frequent yeast infections are a common sign of undiagnosed diabetes in women with type 2, and for women with any type of diabetes, they can signify out of control blood sugars. Once upon a time, I didn’t manage my BG’s so well, so I had frequent yeast infections. Yeast infections are simple to treat, but once you’ve had many and you’ve treated them, the yeast start to resist treatment, so treatment becomes an ordeal. Thankfully, now that I take better care of my diabetes, I’ve had very few issues, but they were such a problem for me once upon a time, that avoiding them is one of the top things that keeps me motivated to manage my diabetes, as tedious and thankless as it feels at times. On those days when I get the fuckits, and I’m tempted to eat potato chips straight from the bag or ice cream right out of the carton, without taking the time to weigh and measure so I have a semi-accurate carb count, I remind myself that I don’t want to die, and I don’t want an itchy hooha. One is my long-term goal, and the other is my short-term incentive.
Diabetic Diarrhea: Before you’re all like, “Eww, gross,” get over it… everyone poops. I went looking for more information about this for the sake of writing this, and came across this article from Clinical Diabetes, co-written by one of our favorite endocrinologists, Dr. Steven Edelman. According to the article, diabetic diarrhea affects up to 22% of patients with longstanding diabetes. Diabetic diarrhea hasn’t plagued me like it did when my BG’s were out of control, but I still occasionally have an issue with it. The doctor who initially diagnosed me with it when I was about 25 told me it was related to autonomic neuropathy, so basically, the nerves in my lower digestive tract have been damaged. I’ve had it so bad that I couldn’t leave the house because over-the-counter meds weren’t doing the trick. Thankfully, it hasn’t lasted long enough for me to feel the need to get prescription medication, or seek care from a specialist. It’s been a mild disruption to my life on occasion, it’s embarrassing, it makes me feel awful, it causes anxiety, and it’s a reminder that as much as I try to manage diabetes, sometimes diabetes grabs the steering wheel and takes me for a vicious ride.
These problems haven’t been the end of the world. I was treated for retinopathy, but I still have my eyesight. My kidneys aren’t in awesome shape, but they get a passing grade, and my nephrologist continues to tell me she has no reason to think they’re going to tank on me. I have mild peripheral neuropathy, so I’m not about to lose a limb. I sometimes lament the “quality-of-life complications” that I have though. They aren’t disabling like those more serious and life-changing complications can be, but they’ve affected my body image and relationships in various ways over the years. It’s hard to not feel physically and mentally worn out when your bowels are haywire, your vagina is indescribably itchy, and your boobs, the supposedly hot symbol of womanhood, are defective and embarrassing… as if I need my womanhood further insulted. If you live with this disease long enough though, this is the kind of shit, no pun intended, that you have to man up and manage. Most of the time, I don’t think about it, but there are moments when these problems recur or make themselves evident in some way, which translates into moments of hating this disease, hating my uncooperative body, and hating myself… and that’s what people need to know about life with diabetes.
You. Are. Awesome. nuff said.
You are amazing thank you for telling it like it is. Not only do non people need to know. Newly diagnosed people and all researcher need to be reminded of these things.
We need a cure
Lee Ann,
I appreciate you sharing unabashedly, perhaps, one person will read this and be able to hold their head a bit higher knowing, that they are not alone. And as far as I am concerned if I need to know about a disease, I would like to know up front what may happen. Doctors don’t tell us this stuff, because individually, it may or may not happen, but people should know. I applaud you.
Thank you for writing this. Thank you so much.
Thanks for your openness and courage to share! Love the title of your blog site.
Thank you once again for your empowering candor….despite years of involvement with JDRF, with research etc, I had never heard of this, so thanks to Ellen for pointing me to your blog post….what makes my learning about it so important is that not only am I the mother of a daughter approaching 20 yrs with diabetes…but I am also a breast cancer survivor…..I am sorry for all you’ve endured but grateful that you choose to share it….Ignorance is NOT bliss when it comes to chronic conditions!
Not only does this help those who have some of the same issues, it helps those who may encounter them later and be baffled. Because you took the time to write about it, maybe another person won’t wait to visit their doctor. AND, even better, will be an informed patient.
Lee Ann, thanks for stepping up and writing this. These may be TMI posts, but these issues need to be talked about publicly. Because as you’ve noted, people are living with these issues but feel alone because no one is talking about them. That almost creates a subcategory if the DOC, where you still feel like nobody “gets it.” I have no idea what it’s like being a woman PWD or living with these things, but I commend you for telling it is like it is, glitter and cupcakes aside.
It’s JMI–just enough information. “I don’t want to die, and I don’t want an itchy hooha.” What is the boy parts equivalent? Will an uncirc. T1 male get yeast infections too? <—that was TMI
Thanks Lee Ann. what may be TMI for some, is “just what i’ve been looking for” information for others.
“I don’t want an itchy hooha” stops me from all-out carb-fests, too. Hahaha.
I honestly didn’t know any of this – generically speaking, of course – and after 30 years, I thought I’d known just about everything there is to know about diabetes (yes, sarcasm!). So thanks for being brave and sharing it… it helps me to be a bit more understanding, and yes, a little concerned that my own male body also might react in ways I’d never thought possible.
I am with all of the commenters above. Thank you for writing this!
Having T1 for 36 years now I did not know that there was diabetic mastopathy! You are so right these issues do not get talked about as they have been kept under the rug for so long it is time to pull the rug away! When my bg runs high the hooha department feels like some one took a razor blade and cut the heck out of me. But I can never get an answer on this issues. I do not have support from friends or family so I am thankful for your blog and honesty!
Thank you for saying some of the things I never could.
I have to admit this post freaked me out. As a diabetes newbie, I was aware of the yeast infections and suffered horribly shortly after diagnosis. But the other issue, I’d not heard/read about. Neuropathy, retinopathy and nephropathy are scary, but at least I knew about them from the start. Thanks for your honest, put it out there approach.
there were things i didn’t even know and i’ve been living with the disease a while. thank you!
You are AMAZING. I agree with everyone else in saying your candor should be applauded. Thanks for having the words that some many of us can’t fine (or are afraid to use). Keep doing what your are doing…you are making a difference.
Your honesty is so needed, and I’m grateful for people like you who can talk about these things that none of us likes to share. You rock, Lee Ann.
Wonder where you bookmark things on the internet to retrieve fifteen-twenty years down the road. Great information.
Thanks Lee Ann!
Geeze, and I thought you were going to get to my least favorite symptom, delayed or impossible-to-rech orgasm in women with diabetes. Very frustrating.
I thought about getting into sexual issues, but I was already anxious and hesitant to post as much as I did, so I didn’t go there.
I can’t tell you enough just how much you rock, and how glad I am that I found you and your blog. Thank you for sharing the bad, the crappy, and the just so downright WRONG it can’t get any wrong-er, AND for sharing your life, and life with D, with us. I consider myself–and everyone else–lucky to read your stuff. xoxo
Not meaning to sound repetitive here, but I do thank you for writing this. You know, they (drs et al) tell us all about the more dramatic complications of diabetes – kidneys, limb amputation, eyesight, almost as a kind of underlying threat that ‘this could happen to you’. But what they don’t tell you about these common and not-so-common, at least unspoken side effects. I bet if you asked every female in this room if they have had yeast infections, I’m betting every single one would raise their hand. Not one dr has ever shared that information with me about yeast infections. Not one has told me that they can become resistant. Well, given that I’ve signed up for diabetes for the long haul, that would really suck, and it would have been really good if some dr along the line had bothered to share! Lee Ann, I appreciate that you have written this with such honesty and candor. I learned a lot from you today, I’m sure others have too, and kudos to you for that!!
I’ve always meant to write something about the whole yeast infection issue. Because OH MY GOD it is terrible. And I never really thought about it before, but not having to deal with them is probably the best reward I’ve reaped from taking better care of my blood sugars. I think it’s important, too, for young lady T1s to know about, because I suffered for a long time before I finally figured out what was going on. I was embarrassed to talk about it or ask for help.
So yeah, thanks for this.
Thank you for speaking so frankly. As the mother of a young t1 (she’s 10) I am glad you made me aware, because I was completely ignorant of all this. My heart goes out to you and all T1 women who are enduring. My heart aches for all the little ones who will one day be women. Thank you.
as a mother of a 12 yo T1 daughter, i thank you so much for sharing this information. it will be very important for her to have in the future but i have no idea if her doctors will bring it up or not (from the comments above i am assuming possibly not). i so appreciate your candor. and i’m with steve, i’d like to bookmark this for my daughter to she can read it several years down the line.
Most people have no idea how damaging diabetes can be. This is very good
info.
Steve
Wow, one of the most worth reading sites I have come across in my recent blog search concerning diabetes. Never heard of diabetes Mastopathy or diarrhea. Diabetes and I have been spending time together for 46 years and I always thought it was luck that I haven’t experienced any complications yet especially when a CNS in endocrinology told me I had the “right kind” of diabetes. I don’t know what that means and she retired so I may never know….darn. I truly think what has helped me the most is the dietitian that my parents paid for me to visit and good insurance so I could access health care. I’ve also had good Physicians but it was me who did the work. What I really want people to know is that it can be done and I do it one day at a time for the most part. Thanks for the candidness as that really helps the most….
I had no idea. No idea. I am so grateful that you write.