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45 Responses

  1. Kim
    Kim March 4, 2011 at 6:31 am | | Reply

    I hear you, loud and clear. Today must be the day for posts about not being able to live up to others’ expectations/ideals!

    Unrelated aside: that hamster picture is possibly the cutest thing I’ve ever seen.

  2. Stephanie
    Stephanie March 4, 2011 at 6:37 am | | Reply

    i know how you feel. I got my blood work results back yesterday and even though i was trying and thought i was making BETTER food choices, both my A1C and my cholesterol went up. now i’m trying to think of more changes to make to bring these down again, but i can’t think of what i could change that would make that much of a difference. It’s especially frustrating to see my siblings and parents eat anything they want, and OVER eat all the time. my siblings are overweight, and i am not, but i am the one who has to deal with high cholesterol. (high for a PWD that is). i’ve had this disease for 23 years now, and just switched to a pump in august. my Dr. wants my control and everything to get better faster, but with my work and school schedule, i can’t dedicate the time to focusing on my diabetes in such detail. it’s so frustrating. i just want to finish up school not having to worry about more medical stuff.

  3. MarkM
    MarkM March 4, 2011 at 6:40 am | | Reply

    So much is required of us to be almost perfect, that we lose sight of our lives and stop loving ourselves. The information you provide on this site is very valuable and you do a great job for us readers! Stay the course and go get a hug. Take a break, breathe, and smile. Your diabetes doesn’t own, nor control you.

    Make today a great day! :)

  4. Denise
    Denise March 4, 2011 at 6:44 am | | Reply

    I find retail tehrapy as effective as insulin therapy when dealing with D! Anything that makes D “fun” or at leat “funner” is a good thing. Even little things like new lancet tools, a new meter case, new skins, a new “D-bag.” Shake up your routine. And frankly, eat a muffin! Just up your insulin. Up your basal slightly for carb heavy days and dose heavy for your muffin. Take a short break doing the minimum you need to function and then jump back in with all new cool supplies, a bag of chips and a new attitude. How ’bout a new medical bracelet–they make cute ones now.

    Or you can buy shoes–not D related but always a good idea. :)

  5. David Downs
    David Downs March 4, 2011 at 7:09 am | | Reply

    I hear you loud and clear! I’m going on 26 years as a T1 and the uncertainty and guessing are the toughest part. Sometimes you do everything right and your BG is still wacked out.

    I’ve been asked by my doctor to track EVERYTHING for the next few weeks. Grrrr!This follows several months with my motivation slipping … except I’ve been eating lots of carbs for many years (with the appropriate big boluses). My weight is up slightly, my A1c has risen to 7. However, I’ll be starting on a CGM soon and with winter fading away, I’ll be getting back on the bike.

    Good luck and I hope your roller coaster levels out quickly.

  6. sas
    sas March 4, 2011 at 7:17 am | | Reply

    one thing that helps my partner with the burnout is he’ll take it easier on a saturday or something like that. he normally tests 6-8 times a day but on a saturday he might take that down to 4. just stepping back a bit and “ignoring” some of the details for a day helps him keep his head. maybe it’s something for you to try?

  7. Kristin
    Kristin March 4, 2011 at 7:21 am | | Reply

    Whenever I get this way – often – what works for me is to not think longterm, but about *today.* I know eating crap and throwing caution to the wind makes me FEEL horrible, and I deserve to FEEL GOOD. I gotta do what I gotta do in order to feel good TODAY. A variation of “if it feels good, do it.”

    The thing about the instant gratification of tortilla chips or my favorite, Reeses PB cups, is that it is TOO instant. By the time I realize I ate them, they are gone. Exercise and eating well, however, allow me to feel good over stretches of time, a few hours or a couple of days. It is self-indulgence of the best kind. Not too quick, but not too delayed.

    Perhaps a stretch, but if you can convince yourself, you might get some mileage out of it.

    We’re supporting you and feel for you, on your good days and bad. Hoping your leg problem, etc. are resolved soon, so you can just get back to your normal pains-in-the-*ss, not all the extra ones! ;~)

  8. Jim Flesch
    Jim Flesch March 4, 2011 at 7:22 am | | Reply

    I have read your excellent blog for several years and this is my first comment. I was diagnosed with diabetes in 1995 (at the age of 40), atrial fibrillation in 2000, and sleep apnea in 2003. I have been insulin dependent since 1997.
    In 2003 my three chronic conditions were destroying me. I was so tired and lethargic that I had trouble making it through the day. I spent every weekend on the couch exhausted. I began to wonder if a person can, like a battery, run out of energy and, and what then?.
    I had an excellent team of doctors and my “numbers” were excellent. (Do you know anyone else whose HDL is higher than their LDL?) In other words, I was an extremely compliant, yet exhausted, patient.
    I have found that exhaustive physical exercise (EPE), which I began in 2003, has been my savior.
    I cycle and lift weights. My adorable wife and I ride about 10,000 miles a year, and we almost always ride long (over 100 miles) and hard.
    Today I could not feel better and I am in better shape than I was 30 years ago when I ran marathons. My energy level is unbelievable.
    However, I accept the fact that i am profoundly ill and very likely will remain so for the rest of my life. Also, there are days where I do not feel very good and my blood sugars are not quite as good as I would like. My HA1C is generally in the mid 6s, which is higher than it should be.
    I have to add that I find your post immature and off-putting.
    I like to drink and eat ice cream, as well as other carbs, but I accept the fact that if I indulge like that I will feed bad.
    People with chronic conditions have to move beyond self pity and take charge if they want to feel better. Although it is not fashionable to say so in todays relativistic culture, but certain actions have predictable consequences, and certain rules need to be followed. I suggest that you consider eating almost no carbs and it is likely that you will feel much better. I also believe in EPE because, whatever your condition, improving your body will make you fell better. Of course, it is beyond question that exercise is beneficial to diabetics.
    If you think you have it bad, look around at others, for example, Laura Hillenbrand, the author of Unbroken. Laura inspires me and I cried reading her book. My guess is that Laura would change places with almost any diabetic if she could.
    I want to add that I am not one of those people who views diabetes as gift. I find that attitude nonsensical. Its a bad thing to have but I intend to make the best of it
    Finally, what I do is hard work and often not fun, but I prefer to channel my energy into riding faster and longer, and not into complaining.
    I am, and will do everything I can to remain, “fit, fast and fantastic.”
    Jimmy Flesch
    If there is anyone who wants to contact me my email is jaflesch@lawggf.com

  9. Mary Dexter
    Mary Dexter March 4, 2011 at 7:24 am | | Reply

    Add to the reasons for high blood sugar: stress over trying to stay perfect every minute of every day. Or trying not to go low.

    What keeps me fighting: my husband’s and daughter’s love. They thoughtfully don’t order the chocolate sundaes and french fries (or if they do, they offer me a bite or a small fry). Of course, this may be because I used to go on crying jags in restaurants trying to find something I could eat. Going off course is better than that. We’re all as mad, as mad can be. Sometimes it’s better to embrace that and move on. “Moderation in all things” (even madness)–Terence

  10. Alison
    Alison March 4, 2011 at 7:29 am | | Reply

    Sometimes the hardest thing is just to keep on going isn’t it? You’re doing a great job Amy, you’ve been playing at being a pancreas for 7 years without a day off and overall hopefully you realise you’re doing pretty good for a pretend pancreas. Keep going! :-)

  11. David
    David March 4, 2011 at 7:35 am | | Reply

    I’m with you on this one, Amy. I’m in one of my eating bad phases and I’m feeling worse and worse about it. I wish I knew when I’ll snap out of it!

  12. Mike Hoskins
    Mike Hoskins March 4, 2011 at 7:35 am | | Reply

    So true, Amy. We all go through that, more often than some might think. I was diagnosed as a kid, and while I do feel some sense of freedom with pumping and carb-counting (compared to what USED to be available), at other times I feel so confined and restricted. I think the more fine-tuned management we have now makes us more burnt out, because we’re always focused on the numbers and results and “number chasing.” It’s emotionally and mentally draining, and it’s impossible for us to not need to step away from it a little sometimes. Maybe not extended periods of time, but just enough so it’s not our focus and we’re LIVING and ENJOYING ourselves rather than driving ourselves crazy with the D-routine. Sometimes, you just have to say “I Just Don’t Care.” Totally natural. I’ve found that venting and writing about my frustrations helps me stay a little more accountable, too… So maybe there’s that. Hope you get a mental break from it and the burn out doesn’t last too long, Amy. Best your way.

  13. Jen
    Jen March 4, 2011 at 7:38 am | | Reply

    I was told to go gluten free a few years ago. I rebelled at first and now I’m good one week and not so good the next. Of course I feel better when I’m doing “what I’m supposed to”…but it’s exhausting!
    Every now and then I find myself watching a movie where someone eats something or I see a random stranger walk by drinking some kind of drink…and I think, “They have no idea how many carbs they are taking in. They don’t need to know. They don’t have to stop and think before eating/drinking. If they want it, they just have it. Not fair” :(
    So…I’m right there with ya!!!

  14. Sysy
    Sysy March 4, 2011 at 7:47 am | | Reply

    Diabetes emotions come like waves and you’re definitely riding a big one right now. The good thing is you’re a strong, smart woman with the right perspective. You just have to ride this out, of course. Sigh…we all do.

    I see how miserable people are around me all while they eat their delicious pancakes without having to think about insulin or blood sugars and I see how they take their health for granted. I would never want that. (Although I do fantasize about eating a stack at IHOP every now and then)

    The good thing is we don’t take a lot of things for granted and I suppose it’s why people with diabetes are so inspiring. Not to mention, full of lively humor :)

    This sounds wierd, but thanks for venting. We can all definitely relate!

  15. Sysy
    Sysy March 4, 2011 at 8:15 am | | Reply

    I just have to say, above commenter, Kristin is so on the mark!

  16. Val
    Val March 4, 2011 at 8:20 am | | Reply

    I hear you! I always feel guilty complaining about carb counting and such too – being dx’d at 37, my reaction to all the “tools” available to us has not been “aren’t these a great leap forward?” but “why are they still such crap?”

    I could not believe, for instance, that the first-generation miniMed “blind” CGM that you had to download at your doctors office wouldn’t at least beep if you went below 40. And now that we have (finally) a “beeping” CGM, why is it that we cannot set up profiles for it (vibrate during the day, beep REAL LOUD between 1-4am, etc).

    Having just come through two months of pure hell – bad insulin AND faulty pump cartridges? At the same time? As if the everyday list of variables aren’t enough – I just want to go curl up in a corner with a box of Girl Scout cookies and take a break from it all.

    Rock on, d-sister!

  17. julie
    julie March 4, 2011 at 8:41 am | | Reply

    Well, funny (not in a haha sort of way), but I have felt like this for the past couple of days.

    Yesterday about mid-morning, just before going to a friend’s to help her w/her office, I felt shakey. Hmmm… I often have lows in the morning, as I ride the insulin machine on the line often. BUT WAS I LOW? NO, I was high. That bummed me.

    Now, I’m not a type 1. I’m a forever skinny, no family history type 2 type, who always ate well as that’s what I enjoy (tho’ I LOVE chips and don’t deprive myself a few).

    BUT, spring is coming. The birds are noisy again. And I’m putting the crap in the house away and making piles for delivery to the humane society thrift store.

  18. Jasmine
    Jasmine March 4, 2011 at 9:12 am | | Reply

    It’s ok to be burnt out. You cannot “make the most of it” every single day. I see nothing wrong with admitting (on your blog) that things are not perfect and that it is so difficult to maintain the discipline required to be the best diabetic possible.

  19. Steve
    Steve March 4, 2011 at 9:20 am | | Reply

    Wah! Do you feel better after your rant? At the end of the day, like it or not, we all have to deal with it. Me for 30 years, and my A1c is 5.6, 2 weeks ago. My daughter has delt with it for 6 years, and her A1c is 6.5, 2 weeks ago. Diabetes sucks, but it aint going anywhere.

  20. Tim
    Tim March 4, 2011 at 11:14 am | | Reply

    Amy,

    One item to consider trying is spelt based grains. They make spelt pasta, breads, flour etc. Typically they do not spike ones glucose the way traditional pastas and breads do. That being said, everyone responds differently but if you have had spelt products, give them a try. Typically they can be found in the natural foods section of your grocery or at health foods stores and places like Whole Foods. I do not recall if Trader Joes has a signficant presence of spelt products.

  21. Anne
    Anne March 4, 2011 at 12:16 pm | | Reply

    I hear you Amy. Maybe I’ve been in diabetes burnout. the tough thing is that if you say “to heck with it!” then you inevitably feel crappier.

    I don’t know the best way to “step away” and “take a break” but if you figure it out, let us know!

    For me, I guess vigorous exercise is the answer. For an hour or two or three, I feel totally normal and diabetes just crosses my mind now and then. I can eat carbs and in fact, need to eat carbs, to sustain my energy. Of course it’s not at all straight forward either, but it is what sustains me, along with support from friends & family.

  22. Anne
    Anne March 4, 2011 at 12:17 pm | | Reply

    I mean, maybe I’ve been in diabetes burnout the last 10 years.

  23. Jen
    Jen March 4, 2011 at 12:35 pm | | Reply

    Tim, Spelt isn’t gluten-free. In addition to all the D stuff she has to deal with, Amy also is celiac.

    Amy, you don’t need to be perfect! You are awesome, and anyone who goes at 110% for 7+ years deserves a few “rant days.”

    Hang in there, and know that all the good you do is appreciated!

    And, retail therapy is *always* in fashion. ;-)

  24. Elizabeth
    Elizabeth March 4, 2011 at 12:48 pm | | Reply

    I feel the same way about carb counting. It sounds like I indulge in more carby foods than you do, but I also get soooooo frustrated by trying to eat food without nutritional information. Pancakes? I totally eat those. I make whole wheat pancakes at home. But if I decide to eat some buttermilk pancakes at the local diner for brunch, I don’t REALLY know how many carbs are in that even if do look up the “average” for a pancake that size. My friends also get together for dinner once a week, ALWAYS at a local place instead of a chain that might have nutritional information. Again, I don’t REALLY know what’s in that food even if I look up the averages, so I can either deal with possible blood sugar insanity, or order something that is clearly low-carb.

    Oh, and pizza? We have a game night once a week and the food is almost ALWAYS delivery pizza, which I LOVE but don’t handle very well. So I microwave my sad little Lean Quisine pizza when the real stuff arrives. I just want to be able to have some real pizza without insane blood sugar!!! :(

    Now I’m done with my little rant, too.

  25. Lili
    Lili March 4, 2011 at 12:59 pm | | Reply

    I’ve been trying things I haven’t eaten in years lately, too – gf bread, muffins, bagels, sushi, snack foods. I’ve been gluten-free due to celiac for almost two years now and I think I’m starting to get burned out on it, especially since I haven’t eaten those foods hardly at all for something like six years. I’ve also been a vegetarian for 18 years (and didn’t like meat before that).

    Intellectually, I know that I don’t eat certain foods because I can’t have the control I want if I eat them – and I am doing everything “right” – it’s just that some foods seem to overwhelm the insulin. But I am getting kind of tired of not being able to eat what seems like anything, not being able to eat at restaurants, how all my food options seem to be carbs and more carbs and it’s so much work to eat how I want. I’m sure I’ll figure it out eventually.

  26. Natalie Sera
    Natalie Sera March 4, 2011 at 1:01 pm | | Reply

    The feelings of anger and rebellion are VERY hard to deal with. I’ve had D for 20 years, and periodically go into rebellion mode. I also have major depressive disorder, and that only makes it worse. Last year, I was depressed, and started periodically omitting insulin, and bingeing on carbs. Result: in the hospital in a coma. NOT worth it.
    So my mantra is, no matter what else I don’t do, like washing the dishes or doing the laundry, I WILL take care of my diabetes. But I also allow myself feast days (like my birthday this coming Monday) when I WILL eat carbs (going to a Thai restaurant), and just use more insulin. Of course, with celiac, this is MUCH harder for you, but a treat every once in a while can help break the cycle of rebellion and poor control.
    The temptation to put diabetes aside is sometimes overwhelming, and it takes every ounce of strength I have not to succumb to that temptation. I’m in a pretty good place now, because I’m still fresh from the coma, but I know it will get hard again, and I have promised myself I won’t give in. I’m sorry I can’t do anything for you, but know that I understand your feelings!

  27. k2
    k2 March 4, 2011 at 3:41 pm | | Reply

    Amy –
    GREAT POST & thanks for the shout out!
    Know what? I totally hear you!
    While I’m so happy that I can count carbs and don’t HAVE to say no to anything like I did back in the day, I still say no to lots of things, and I sometimes I go crazy from the carb lust!
    I’ve gone so far as to write a “Dear John” Letter to Pasta, have admitted publicly on “the twitter” that fresh baked bread in all forms is like crack to me, and I’m all too familiar with the lure of the Jelapeno Herr’s potato chips!
    I’ve had times where I just say: Damn the carbs, I’m eating that! ;)
    I can’t imagine throwing celiacs into the mix and having “the diabetes” (and all that comes with it) thrown into my life unexpectedly and at full force as an adult!
    Dealing with diabetes and food is HARD. No matter what technical and scientific advances come our way,we always have to think about what we put in our mouths.
    It’s an exchange of sorts, we now have the freedom to eat what was once considered off limits- BUT, so much thinking and planning goes into eating the once forbidden diabetes fruit, that sometimes it’s hard to enjoy it fully!!
    Still, I’m SO glad & grateful that times have changed.
    HUGS
    Kelly K

  28. kathy
    kathy March 4, 2011 at 4:39 pm | | Reply

    It can be so frustrating to do all the math of counting the carbs, balancing with insulin, consider exercise, stress, how are my BGs running today, this month…. and so on. Make your best educated decision on what is best to do and have it not work right over and over. Sometimes all you can do is throw your arms up and walk away.

    Thats ok. You know you will always come back, and be stronger for it.

  29. Kelly
    Kelly March 4, 2011 at 6:21 pm | | Reply

    Im TOTALLY stuck in a stage of food rebellion lately too. Its horrible. Im nearing 5 years this month…..I guess burnout is enevitable in all of us at some point. -Sigh-

  30. Bob
    Bob March 4, 2011 at 7:08 pm | | Reply

    I had a series of bad pods, and I realized this whole box (actually two with the same lot) were defective. I switched boxes and the string of bad pods stopped. I told Omnipod the whole lot was defective (it was) or at least 40% of them were defective and that I was returning the two boxes and that they should be replaced. It took a while but they finally agreed. If the pods are defective, the entire box is likely to be defective. You and your insurance company should not be paying for defective items, and you shouldn’t put up with the headaches and grief of defective products.

  31. Jim
    Jim March 4, 2011 at 9:53 pm | | Reply

    When I decide to pig out, a nice squirt of novolog does the trick….

    Long term of course this tactic is not too smart. But, I’m not too smart either….

  32. Kim
    Kim March 5, 2011 at 7:20 am | | Reply

    I hope your rut ends soon. I am about to hit my 25th anniversary with diabetes, and I am 40. I am so sick of it, but it really helps to know that everyone feels that way sometimes. The Diabetes Burnout book was a big help to me when I read it. Best of luck.

  33. Crauge
    Crauge March 5, 2011 at 8:42 am | | Reply

    It’s all about ‘self-control’ and understanding – and 100% obeying – what you have to do because we are people with diabetes. Yes we have been dealt a raw deal and now have to live this way, but it is not a punishment. Also, yes it IS unfair and a nuisance, but think of the alternative. We have it much better than our predecessors did who had to do much more and still did not have it as good as we do.
    I guess that I am truly an optimist and look at the positive aspects this disease has given me (i.e., a reason to eat better and exercise, watch my lifestyle, etc.). It is all about BEHAVIOR CHANGE; some of us embrace it more willingly than others, but the impetus behind this lifestyle should be living wholly.

  34. sarcoidosis girl
    sarcoidosis girl March 5, 2011 at 10:25 pm | | Reply

    I love you honesty and feel your pain. I come from the other side of the road. I am a wife of a Sarcoidosis Survivor. Another nasty autoimmune disease that many with diabetes suffer. Watching people we love struggle is the most frustrating and helpless feelings ever.

    Always know that you are NOT alone, many suffer silently. More need to scream and shout! Being a voice for hope and help.

    I now shout and piss many Dr.s’ off because I advocate natural remedies for sarcoidosis and diabetes. People tell me I am crazy, it is a placebo effect, the pictures are fake…. there is no proof. I have heard it all but I know my husband and every other person I’ve helped. They are NOT faking. What would a Dr. say to you if you were on 6 insulin shots a day and in 30 days you went to only 1?
    Jack’s Dr.s and specialists practically ignored him when he came back to them without the swollen lymph nodes (that they said would never go away without surgery) & no more symptoms. He went to 3 different specialists every 3 months for 3 years. It has been over 2 years since he has gone to see any of them, do you think they’ve even called to check on him??? NO, nothing.
    I am jaded, I will admit it. I read your post and could appreciate your venting. Thought I would share from an entirely different perspective and thank you again for your honesty. Keep it coming, disease is hard enough to deal with, let alone feeling alone in it all.

  35. Laura
    Laura March 6, 2011 at 1:51 pm | | Reply

    Well, I never really kept my carbs to a minimum but I always bolus…resulting in weight gain in the past seven years. I hit the 25 year mark this year complication free BUT I am up three dress sizes and my pants do not fit. Will I have to forgo carbs forever in order to lose? Guess so. I am not going to do that.

  36. Joe
    Joe March 6, 2011 at 7:42 pm | | Reply

    I can hear you but the key is to keep going. From time to time we can stumble but what matters most is we can learn how to get up. I applaud you for voicing out your depressions. You can make it!

  37. Maria
    Maria March 7, 2011 at 6:24 am | | Reply

    Please be encouraged that with anything whether you’re dealing with a chronic illness, a difficult situation in your personal life that sometimes the most dificult thing is to keep positive. One way to do that is to think of one positive thought when a negative one threatens and then you’re spiraling out of control. For example, my BG was 140 this morning, or you can do something for yourself like going to a movie, watching a show you enjoy or hanging out with friends. Having a chronic illness is an everyday thing which means that you will not be perfect — it’s impossible! Doing that one positive thing or thinking that one positive thought might be all you need for that small victory!

  38. shinaye
    shinaye March 11, 2011 at 12:01 pm | | Reply

    i agree with everybody!!!! Diabetes id tough to manage, but with gluten allergies – yikes!

    Kepp venting, amy, majes the rest of us strugglers know we are not going alone – such a devestingly alone feeling.

    And yes, the hamster with the carrot(?) is adorable.

  39. Greg B
    Greg B March 11, 2011 at 9:23 pm | | Reply

    Do your best Amy, I have used your posts to help dial me back in (or as close as i get) when I feel frustrated. Knowing you and the people who follow you are out there makes it better. Strange but I have no friends who are type 1s so your website helps. Read all the love and support take a deep breath and start again, its all any of us can do.

  40. Lissa
    Lissa March 12, 2011 at 4:15 pm | | Reply

    Scared to death!!! I was told for years to lose weight for fear that I might develop Type II Diabetes. Now I have it. Was given pills to take a meter to check to blood sugar levels. Yuk!!! I’m feeling anxious that I want to lose all I can right away in hopes of reversing this. I should have listened to my doctor. But I know it can’t be too late to make the changes I need. This was a big wake-up call and a big kick in the pants.

  41. Rick Kephart
    Rick Kephart March 14, 2011 at 5:36 pm | | Reply

    I started on insulin in June of last year. I was on Glyburid MCR Tabs for over a year, but my blood sugars were starting to go up. My doctor did not want to increase the Glyburid because of possible side effects on my kidney transplant. So I started on Lantus and got serious about losing weight. I lost around thirty pounds, Lantus dosing ended up at 40 units at bedtime and I was feeling good about myself. Then Halloween, Thanksgiving, and Christmas came around and the temptations were too much. I put back on fifteen pounds my insulin dose went to 44 units and I felt a little to a lot depressed.
    The weather now is starting to warm up, I have been working out, trying to control my diet and I have lost five pounds. But this time it is much harder to get my act together. I understand perfectly well what you are going through. This diabetes management is hard. It would be nice if someone would come up with a magic pill. :)

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  43. Jon
    Jon May 16, 2011 at 9:09 am | | Reply

    I have just started studying Diabetes Care with the Open University and all I can say is that diabetes sufferers are so strong and determined. To follow such a strict diet when all around are eating sugary treats must be so difficult. I have great respect for you.

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