Diabulimia -- My Story

Tressa, you're awesome for sharing this with everybody. I would imagine, like eating disorders, it still sort of a constant strength that you have to maintain to remind yourself how not worth it diablumia really is in the end.

Anyway, thanks for really putting this topic out there!

Hey Tressa,

Thanks for posting that. As your mom I saw your experience so differently from you. It is a torturous thing to watch your child go through something like this - something that didn't even have a name back then. Writing about YOUR feeelings and YOUR experience is helpful to many parents of teens with this problem.  It took courage to write this, and you did an eloquent, thorough job! I love you.

Mom 

Tressa,

    Thank you so much for sharing your story so openly and honestly. My daughter is just beginning her teen years. Your blogs continue to help  keep communication lines open for my daughter and myself as she is just beginning to face many of the peer pressures you touch on in your blogs.In fact, this one set a discussion amongst her and her friends at our house tonight. Keep writing these great blogs and know that we'll both be rooting for you on that second April.

Tressa... Thank you so much for sharing your story. I am a 47 year old type 2 diabetic. I was a bulimic for 20+ years, One day I quit... I was always overweight but when I stopped purging, I went to extreme obesity... then became diabetic. It was a fast, downward spiral but I never went back to the bulimia. The diabetes still has control over me... I am trying to control it!

It takes a lot of strength to tell a story like yours. I am a school counselor and I try to deal with eating disorders... especially since I have one and I know many of the secrets... We can be so smart, can't we? Diabulimia is something I know about but hadn't learned too much yet. Your blog has really helped my knowledge and given me encouragement and strength. 

Again, Thank you for your honesty in sharing! 

Dear Tressa,

It is touching that so many people have been moved by your story. I hope they take away something positive and hopefully avoid some of the negative experiences you have faced.

Your post implies that the diabulimia is in your past. Will you write about how you went into DKA less than a week after that post - having lost about 20 pounds in just a few weeks?

Is it really in your past now? If yes, what changed you?  For someone struggling with this, you might be just the person to make a difference by sharing what the "defining moment" was for you.

I haven't known you that long but I've seen you go through a lot of struggles and I've seen you grow and mature quite a bit in a short time.  You may not believe it but I truly want the best for you. 

Peace,

Thank you Tressa for sharing your story. This is a very important women's health issues that many healthcare providers just don't know enough about. Here is a link to research done by Joslin Diabetes Center. My daughter was a participant. Unfortunately, she died on January 28, 2004 after many years of insulation omission or manipulation.

http://www.joslin.org/1083_4281.asp

My thoughts and support are with you, as I know you struggle with this every day.

JJs Mom

Tressa,

Thank you for sharing your story of diabulemia in so much detail.  I truly hope that it helps other type 1 diabetics out there.  I myself am a type 1 diabetic, 36 years old and was a diabulemic for 12 years.  I did and felt most of what you wrote about but I was never hospitalized for DKA.  I am on an insulin pump now and have not skipped insulin since December 2000. 

I wanted to post my comments because I wanted to add another word of warning for those of you who might be practicing diabulemia.  Like Tressa, I have damaged my kidneys and now have to take 3 different medications for high blood pressure and to help cut down on the protein that I spill in my urine.  I had bleeding in my eyes and my retinas were detaching and I had to have two eye surgeries.  I am so fortunate that I'm not blind and my opthalmologist tells me so.  The hardest thing that I now have to deal with is that I cannot carry a baby.

My doctors have advised me that it is far too risky for me to get pregnant.  So ... please believe your doctors when they tell you that you MUST take your insulin, you MUST ***** your finger and check your blood sugar and you MUST try everything you can to keep your A1C below 8.  Don't let diabetes control you ... YOU control it.  Don't let it rob you of all of life's experiences. 

Please get professional help if you're practicing diabulemia and start taking your insulin on a consistent basis.

Thanks again, Tressa, for your bravery in putting yourself and your story out there.  I wish you strength and conviction to continue to get better.

--Vanessa

thanks for sharing your story!

If anyone is looking for support for diabulimia, Weight of Illusion is an Eating Disorder support board that also includes a board specifically for Diabulimia! :)

Thank you for your courage and bravery.  I am a 50 yr. old Type 1, since I was 14.  I had a rough time getting through my teen years.  I am male, and had some of the same issues "Sam" had.  I couldn't stand who I was and all of the bad feelings I was experiencing.  I used to skip my insulin, wind up in DKA, and end up in the hospital.  There really wasn't any psychological support at all to help me deal with all of the feelings.  Winding up in the hospital, and being comforted and cared was the only way to escape.

I wish there was a place like Cumberland when I was growing up.  I really want to thank your mother for posting, also.  My mother is gone now, and I wish I could have explained to her all of the feelings I had, and I wish I could have apologized to her for putting her through everything.

Mothers are the best!!

Hi Tressa,

I love your blogs, your honesty and...I loved meeting you recently--as your new diabetes nurse practitioner.  I have long been very interested in  diabetic cyber-chatter, as it helps me to treat those entrusted to my care.  Thus I was doing my usual lurking and discovered your blog--enjoying your words before learning it was YOU.  You could aspire to be a writer as well as a nurse. :-)

Don't miss your next appointment!

Tressa,

 Reading your story was almost like I was reading something that I could have written myself. It's so weird, because for so long I have felt so alone in my struggle. I'v been hospitalized for my eating disorder multiple times, but have always felt separate from the other people because none of them ever had diabetes on top of their EDs. While I wish this pain and agony on anyone else, it is a slight comfort knowing that I'm not the only one out there.

  I've been struggling since about 2001, and let me tell you, my mother and I have searched relentlessly and, for th emost part, unsuccessfully, to find a treatment center that specializes in diabetics with eating disorders. Reading your blog and hearing the name "Cumberland" prompted me to do some research, and I am in the process of trying to get accepted to go there soon. But I was wondering if maybe you could share a little bit mroe about your experience there, how it was beneficial, what to expect, etc...I don't mean tto put you in an awkward position but this is the first place that I've heard of that really sounds like a place that could truly be helpful. Thank you, and I'm so thankful that I found your story. YOu are so brace to post.

Sorry, I meant to say you are so BRAVE to post!!!

Hi Tressa -

Thankyou so much for sharing your story; I felt like I was reading something I'd written myself, it definitely brought a tear to my eye simply because it's just so odd when you encounter someone that's experienced something you thought was so rare- I don't even know another diabetic, let alone somebody suffering with diabulimia. I would explain my situation but you've pretty much done it for me- except I'm not in 'recovery' as such, I'm still in the worst of my illness, and frequently have to go in to hospital for DKA episodes, and have since I was 12. I am now 18, and I'm already showing signs of kidney damage. It's pretty scary, as you probably can imagine/perhaps know. Basically I have the same question as the person before me; what was your turning point? Are you fully recovered now? How do you do it? I know it can't be simple, nor is there a quick fix answer... but as I'm sure you know, this whole thing is such a great big forest of confusion, it's so easy to get lost and difficult to see a light at the end of the tunnel. I think, the most difficult thing for me is definitely the weight gain that comes when I go back to regularly (or even just one shot) taking insulin - though my doctor reassures me this is 'insulin edema' - I just can't handle it, and would rather feel the effects of DKA and feel skinny then 'puff up' like I do. I'm lost - please do get back to me on this as I'd just love to hear your input. I really really look up to what you've done, you're so strong and truly an inspiration. xxx

hi Tressa, reading your story gave me chills, hope, despair all types of emotions and am crying as I write this.  you see, my daughter is 24 she is currently in ICU the 8th time this year for DKA.  The last time, a month ago, I had to call an ambulance for the first time, she was unconcious with her 3 year old daughter by her side, she remained unconcious for 12 hours, had to have a direct line to her main artery to get her fluids and insulin, her hands were curled upwards, blue and cold, her breathing was rapid because of carbon levals,was vomitting and choking and her heart rate was 160 for 16 hours.  I thought that would be a wake up call, here we are one month later doing it again. her therapists want her to go to Riveroaks hospital in New Orleans, her insurance won't cover it, she is more than willing to go, we as her family are anxious for her to go. i know this is the only hope i have for her survival. i feel such desperation. i am proud for you overcoming this though i am sure it is work. i wish for you, my daughter and anyone suffering from this,that you realize your value as wonderful people and that your innercircle of friends and family don't care if your a million pound toad as long as you are alive and healthy.  you are important people. thank you for sharing your story. Betty Tomas

Tressa:

I'm glad to see you're website, I will tell my daugther, Kaytee about it.  She was diagnosed with Type 1 Diabetes in 2005, she had just turned 14.  She learned very fast that if she didn't take her insullin she'd lose weight. The bad part about it is that the doctor's knew all about it and never mentioned it to me, saying "Hey, it's a known fact that teens, have been doing this, so here are things to watch for."  So because I had no idea what was going on we suffered for months trying to figure out what was going on with Kaytee.  Finally one day on some morning show and also in a magazine, they had a girl on there suffering from "diabulmia"  I thought, thank GOD, there is other people going through this!! However, we're we live, my daughter is the only one that is knowingly doing this, so there are no "groups" or anything for her.  We've done therapy, in patient, out patient, residential, we wefre even on the Dr. Phil show, cause I thought maybe he would know someone that could help us, but that was a joke.  Nothing has worked for her....yet.  She's been in the hospital 13 times in three and a half years because of this.  She gets Edema,rashes, etc.  So far, no major damage has shown itself, but I feel that it's just a matter of time, her A1C has not been below a 14 in 3 years.  Currently at 16.  It's frustrating knowing there is nothing that I can really do for her.  We tried locking the refrigerator, pantry and freezer, but then she'd steal my car at night along with my debit card and go buy her "binge" food.  She's in high school and should be having the time of her life but she's tired, sick, and has basically tuned out.  One of the residential facilities she went too was near St. Paul MN and they specialized in diabetics w/ED.  Kaytee loved the group, because she finally could see and talk to people just like her, but because of insurance reasons, she only got to stay for two weeks.  I hope that scientists one day iwll put as much thoguht into diabetic research as they do for breast cancer so that we can cure this disease!!