Holy @#$! Amazing Stories, Vol. 1

I got this email a few days ago that knocked my socks off. It is one of those eye-popping examples of the killer diabetes experiences many of us have lived through or heard about. I just now received permission to post it anonymously — in its entirety — which the author says would be very cathartic. Talk about your “Something Clicked” experiences! Here goes:

Amy,

I wanted to take a moment to thank
you from the bottom of my pancreas for your blog. I doubt that I could express what an
influence you have had in my life.

About a month ago I was in a truly
pitiful place with my diabetes when I wandered across your site. I was so depressed and tired of it all. I have been trying sooo hard to keep
everything in check and be a good little diabetic and I did nothing but fail
test after test. I was either at 350 or
47 and I felt like a human science experiment. I Live in NYC which is hard enough, but when you are down, it can be the
most oppressive city in the world.

I was diagnosed in April of 2003 a
week before my 21st birthday. I have no family history, I just got a very bad flu and then came
this. I went to my school nurse because
I had a huge purple bump on the back of my leg that I thought was a tick
bite. It turned out to be a carbuncle
which is a more appetizing word for boil. She tested my blood sugar and it was 692. She said I had to go to my doctor and I said
“I can’t, I have to go to class” Obviously I didn’t understand the seriousness of the situation but the
nurse was this fat lethargic excuse for a health professional so I figured it
could wait. I finished my classes for
the day and headed to my doctor around 3:00. This is where the drama begins.

My family doctor turns out to be an
idiot. He labels me a type 1.5 because I
am “too old for type 1 and too young for type 2.” He sends me home with a vial of 70/30 mix, a
handful of syringes, and NO Glucometer! I wish I was making this up but it is true. This is where the bad habits started. Once I graduated from college I went home so
my mom could take care of me and met with a DB educator once. Beyond that I have basically been on my own
and unable to find a decent endo in NYC. The problem with big cities is there are so many doctors your chances of
getting a bad one are very high. I have
done the best I could with the Novolog and Lantus but my A1C’s were in the 7′s,
8′s and 9′s. I would go through spurts
of trying to get better control but the grind of the disease along with little
sipport made it hard to succeed.

My ultimate low came the night
before I found your site, while I was at Kmart at Astor Place. I left my office at 123 but felt a little
shaky so I ate a bar of some kind. About
30 min later I realize that I am staring at Martha Stewart sheet sets, which I
don’t need, and didn’t come here for. Just try and get a visual on this. I am standing slack jawed in front of a wall of pastel sheets, holding
cat food, toothpaste, frosted mini-wheats (because they look tasty when I am
low) and a few other random objects I picked up along the way, sans basket when
it occurs to me something is not right here. At this point I literally start acting like I am mentally impaired. I drop everything I am holding, empty the
contents of my purse on the floor, sit down in the middle of Kmart and attempt
to test myself. I shaking so badly that
I can barley do the test. My little
freestyle flash reads 37. This is when I
realize I have NOTHING on me. No sugar,
no gel, never had a gulcogone kit, nothing, but I am in kmart and they have
juice.

I am confused and embarrassed, and
this is New York so I don’t ask for help and cram everything back in
my bag and start making my way down 2 levels to get to the juice. Surprisingly I make it to the OJ but all I
can hear is my mothers voice telling me I can’t open things until I buy them, SO
I GO STAND IN LINE!! Crazy I know, but I
am not functioning well at this point. Once again this in New York and things don’t operate the same here so standing
in line a kmart can sometimes take a good 15 min with only 1 person ahead of
you. I drink my juice and start eating
some kind of meal bar at look for a place to rest but I am on one of the busiest
corners in NYC at rush hour. I found a
poorly lit corner and just started to sob. Even writing this is still very hard because I have never been so scared
in my entire life.

That night I cried for hours in my
boyfriends arms while my cats licked the tears of my cheeks. Scott and I have been together for 3 years
and he has saved my life and been my DB hero countless times, but he wasn’t
there this time and I felt so out of control. I was diagnosed 6 months before we met so he has really been through
it.

The next day my eyes were so puffy I
could barely see and I was feeling like the only one in the world with these
problems. Everyone with Type 1 is like 2
or 10 when they get it. I never heard
about people my age getting it except Halle Barry. (side note – where the hell
is her support!!) I don’t know any other
diabetics and can’t really talk to anyone about it because they don’t get
it. That’s when something just
clicked. I popped up from the couch and
yelled “Fuck This Fucking Shit” so loud I scared the cats. I realized that I CAN NOT be the only 21 year
old to get type 1. I CAN NOT be the only
one who got a bad start. I CAN NOT be
the only diabetic who feels like this is too hard and wants to give up. I was sick and tired of this disease
controlling me instead of the other way around. And this was not like the other times, I needed things to change or I was
not going to make it.

I got on the internet and went form
site to site, link to link, until I hit your site. It is the single best thing to happen to be
concerning this disease. I felt like I
found the emerald city. I started
reading post after post and checking out the other blogs and couldn’t believe
the stories I have read. My 2 faves are
sixuntilme and the ‘betes (she’s a lot like me) and I am even thinking of
starting my own. So many of the posts made me feel calm and secure and brought
tears to I also found out about the Naomi Berrie Diabetes Research Center at Columbia University.

This place is awesome! It is your entire
team under 1 roof sharing 1 medical chart that is connected to the #2 research
center in the country! I told this same
sob story to the director of the center and she agreed to take me on as a
patient even though she hasn’t accepted any recently. I am going to get on the pump which I am
really excited about.


Since this epiphany I have realized
another few nuggets of wisdom: 1) I was
watching my boyfriend S. running down a subway platform with OJ in hand and
realized it is a slap in his face when I don’t take care of myself. This disease affects him so much but he is
rather powerless to do anything but react. 2) I have been so adamant about not letting this disease define me. Why? Something has to define who you are, why not diabetes? Because of it I have quit smoking, I exercise
everyday, I look at what ingredients are in things, and I really care about my
body. Being a diabetic doesn’t make me
weak or alone or solitary, it will make me
stronger.

I am sorry this is so long. I have never told this story to anyone
because I figured no one would care or understand. Because of you I know there are thousand of
people who will care. I know that when
the health system fails me I will have this network. Since I found your site I haven’t had a
reading over 190! Because of you I am
not the only diabetic I know. You have
deeply affected the course of my life and I really appreciate it.

Thank you for all that you do – you
make a huge difference,

– M.W.


Hands_on_keyboard_1Note that I title this post Vol. 1 because I know there are many, many more Holy @#$! D-stories out there just waiting to be told. Mine are amusing, but not nearly as heart-wrenching as this one. Anyone else care to share?

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22 Responses

  1. Brian King
    Brian King November 18, 2005 at 5:53 am | | Reply

    Great Story! I was diagnosed with Type 1 at age 32, so there is no such thing as being too old for Type 1.

  2. Erica
    Erica November 18, 2005 at 7:01 am | | Reply

    I agree – I was just diagnosed a month ago at age 28. When was Halle Berry diagnosed? I had no clue…

  3. Scott K. Johnson
    Scott K. Johnson November 18, 2005 at 7:37 am | | Reply

    Thank you M.W. for allowing us to share your story. Big thanks to Amy for helping M.W. with things and for sharing that experience with us.

    It’s exactly these kinds of things that make our blogs important pieces of the big puzzle. We are helping to fill a gap for people. There are plenty of educational sites out there, but our blogs help spread the stories of our life experiences with diabetes.

    Big thanks to both of you, and to everyone else out there, both the bloggers and the readers – it does make a difference!

  4. Andrea (yet another)
    Andrea (yet another) November 18, 2005 at 7:52 am | | Reply

    That was a great story…I can definitely empathize with how this young woman feels. This disease has a lot of ups and downs on more than just one level. Some days, you feel like you can’t take it anymore, but somehow you get through it and you keep fighting.

    I was dx’ed at age 24, during a period in my life where things were somewhat difficult. I had NO health insurance, was only working p/t at a job I hated, and was living at home with my parents. When symptoms started popping up, I believe thirst was one of my first signs, I didn’t think much of it at first. Then I started losing weight for no reason and then things sort of went downhill from there. I knew something was up, but b/c I didn’t have insurance, I put off seeing the doctor… which looking back was a stupid move. Finally, I couldn’t put it off any further. I spoke to my doctor on the phone and she wanted me to be seen as soon as I could come in.

    On April 26, 2002, I finally went in to see my doctor. Little did I know that that day would change my life. I believe that my doctor knew pretty immediately what was wrong with me, but she did the usual tests…such as a finger stick, urine test(for ketones), smelled my breath. The glucose test came back with a reading of over 600! I also was spilling major ketones. My doctor didn’t hesitate- she called one of her friends, an Endocrinologist (soon to become my own doctor). He suggested that I be admitted to the hospital in order to gain control over my sky high sugar levels and to treat my dehydration and screwy electrolyte levels.

    So needless to say, I went into the hospital, which was far from an enjoyable experience. I was tested every hour, hooked to an IV, and had multiple blood tests. Everytime I saw the phlebotomist at my doorway, she apologized, b/c it meant that the doctors had ordered yet another blood test. I guess my electrolytes were really off. I was also woken up every 2 hours that night for sugar levels as well. My(soon-to-be) Endo visited later that night and explained to my family and myself a little about the disease. He also explained that a dietician would be coming by to discuss nutrition and diet the following day.

    Normally, a newly diagnosed Type 1, would stay in the hospital for a few days to get sugar levels regulate, but because of my insurance status, I would be given a real crash course in Diabetes 101. I would have to learn all this in a day and a half- talk about overwhelming. Then, of course, I was worried about the expense of being in the hospital. I believe that overnight stay cost me something to the tune of four thousand dollars. Unbelievable!

    I remember when I was discharged Saturday afternoon, I went home feeling very overwhelmed and scared. Before going to sleep that night, I remember having a very morbid thought- I almost wished that I wouldn’t wake up the next morning. Obviously, I did…and I’ve continued to wake up each morning since, but I think that tells you how I was feeling after receiving news that no one wants to get.

    Looking back, I think, maybe it was silly to have that morbid thought. Yes, Diabetes is awful, but we are lucky in that we can control this disease somewhat… There are so many other illnesses out there where, I’m sure, people feel powerless. I’d be lying if I said it doesn’t get me down at times, but I am a strong believer in the philosophy of “what doesn’t kill you, makes you stronger”.

  5. Jo
    Jo November 18, 2005 at 8:48 am | | Reply

    TypePad is kicking my trackback .. I posted a link to this post here: http://joscafe.com/2005/11/18/diabetes-must-read/

  6. Tekakwitha
    Tekakwitha November 18, 2005 at 11:09 am | | Reply

    M.W.

    Thanks for posting your story and I am so so very glad you made it through your low and found this site. Feel free to email me (my blog is the ‘Betes) anytime.

    -Tek

  7. Jana
    Jana November 18, 2005 at 6:42 pm | | Reply

    M.W.,

    I live in NYC too, and I was diagnosed two years ago in the middle of my freshman year of college at age 19 (as if freshman year of college isn’t stressful enough). It was weird reading your story because I can totally imagine *exactly* what you are talking about…I’ve been to that K-Mart a million times.

    My favorite thing about living in NYC and having the ‘betes is testing blood sugar on the train…I always get funny looks.

    E-mail me if you want, and we could even get together for coffee or something sometime (though I should warn you that until Christmas I’m hella busy because I work at a toy store…)

    Jana

  8. PrintCrafter
    PrintCrafter November 18, 2005 at 7:08 pm | | Reply

    I guess I’m the old man here; I was Dxed T-1 at age 41. I too felt alone in the world until I discovered first DiabetesTalkFest and through it Blogs like this one. The support I get though the diabetes community is what keeps me going. Your story touched me deeply. You write wonderfully and from the heart. I hope you start your own blog…

  9. basil's blog
    basil's blog November 19, 2005 at 8:46 am | | Reply

    Brunch: 11/19/2005

    * Beth is queen
    * Baldilocks (Two of Clubs) looks at an NAACP leader converting to the Dark Side
    * Amy (Diabetes Mine) has a story [via Jo�s Cafe]
    * Wizbang has a history lesson
    * Public Eye covers the Dems� rejection of their own words
    * Pirate�s…

  10. basil's blog
    basil's blog November 19, 2005 at 8:46 am | | Reply

    Brunch: 11/19/2005

    * Beth is queen
    * Baldilocks (Two of Clubs) looks at an NAACP leader converting to the Dark Side
    * Amy (Diabetes Mine) has a story [via Jo�s Cafe]
    * Wizbang has a history lesson
    * Public Eye covers the Dems� rejection of their own words
    * Pirate�s…

  11. basil's blog
    basil's blog November 19, 2005 at 8:46 am | | Reply

    Brunch: 11/19/2005

    * Beth is queen
    * Baldilocks (Two of Clubs) looks at an NAACP leader converting to the Dark Side
    * Amy (Diabetes Mine) has a story [via Jo�s Cafe]
    * Wizbang has a history lesson
    * Public Eye covers the Dems� rejection of their own words
    * Pirate�s…

  12. Simon
    Simon November 20, 2005 at 1:49 am | | Reply

    Just to say ditto to Printcrafter’s comments (I’m another ‘old man’, diagnosed this year at 41). Amazing story, MW. I feel quite humbled that my first six months of diabetes have been relatively uneventful by comparison.

    Best of luck, and keep us posted on how you’re doing.

  13. PCD
    PCD November 21, 2005 at 12:22 pm | | Reply

    I was diagnosed as a Type 2 over 10 years ago. My first doctor was an idiot. I call him the Food Nazi because to him EVERYTHING could be cured by being a total Vegan.

    It wasn’t until I got divorced and met a new lady who knew what was necessary about taking care of a Diabetic. Cyndi has a 27 year old son who was diabetic before 5 years old.

    I had been on a roller coaster with my blood sugar before I met Cyndi. I got low like you wouldn’t believe, but I also got high by eating nothing!.

    The big incident for me was I’m at the store with Cyndi getting things for the house. I’d only been divorced for a short time and didn’t have much in the house because the ex and the locusts of her church took everything but one book case and the cats from the house when she moved out. THEY EVEN TOOK MY TOOTHBRUSH!

    Well, I hadn’t let Cyndi pay for anything up til this time. I was pushing a cart and I noticed I was walking very funny. My right leg was like rubber and all over the place. All I remember is that Cyndi told me to go the the car. Next thing I remember is Cyndi asking me a question and I said, “Just Call 911″. Next thing I remember is being in Fire/Rescue vehicle being transported. Actually from that point I only remember things when someone was sticking me with a needle.

    Cyndi knew something was DRASTICALLY wrong when I let her pay for our shopping. I could answer questions, but there was no “me” there behind the answers.

    I had been working 2 jobs (and still do) and put in too many hours, too little sleep, and way too much stress. I still don’t know what happened. But I do know my sugar is under much tighter control and the Doctors can’t believe that I’m testing most every day.

    Hey, I’m human. I may only get 13 out of 14 days, but I used to do zero because I had Rheumatic Fever when I was 4. My butt was a pincushion, and I still have problems with needles, especially IVs.

  14. Genetics and Public Health Blog
    Genetics and Public Health Blog November 22, 2005 at 9:05 pm | | Reply

    Grand Rounds 2.09: The Best of This Week’s Medical Blogging

    Geena at code blog is hosting this week’s Grand Rounds 2.09 (The Scoop). It’s Geen’s third time hosting Grand rounds so she really knows what she’s doing.

    Here are the posts that jumped out at…

  15. The LIVabetes Glucose Goddess
    The LIVabetes Glucose Goddess November 23, 2005 at 4:50 pm | | Reply

    Hooray for you M.W. for sharing your story and your truth!
    I was dx 7 years ago at age 34…I think I am a type 1.79??
    I find the lo’s have been one of the most scary and difficult things to deal with. I’m not sure that those who have not experienced it can truly understand.
    It is sort of like being friggin’ “ambushed” isn’t it? One minute your fine and the next minute BAM! your out of your mind in hypoglycemia land!
    A few of the places I have been Ambushed are…in the grocery store, while driving in traffic, at 3:00 am..wake up sweating and find myself crawling to the frig for a little pick me up, while having sex! and a million other places the “hypoglycemia monster” likes to rear its ugly head.
    I find that even while I try to remain in a constant state of preparedness with some sort of fast-acting carbohydrate in one pocket (and a condom in the other pocket just in case I get lucky)…sometimes ya get lucky and sometimes ya don’t!(those of us who live with it everyday know its not a matter of “if” the next hypoglycemic episode will come, but rather “when”?)
    It seems to demand of us that we live on that edge in the place of uncertainty. It takes alot of courage, endurace and faith to walk the “diabetic path.”
    I just wanted you to know that I care and I understand.
    You are a courageous diabetic warrior…I admire that.
    We have to look to eachother for support and encouragement.
    I think our highest endeavor ought to be to raise confidence in one another! Amen
    Keep up the good work!
    Don’t Diabetes…LIVabetes!!!
    with love and chocolate
    Laura the LIVabetes Glucose Goddess!

  16. Deborah
    Deborah November 27, 2005 at 4:55 pm | | Reply

    Dear M.W.,

    I am a nurse and it is heart wrenching to hear about your story. I would say about one-fourth of the patients I work with in the hospital are diabetic, although most are type II. It is so sad to me that you didn’t get the necessary information you needed in the beginning. I think the health system needs to make information more easily accessable to everyone, not just those with insurance. And you should be able to go to someone with questions other than your doctor. I hope to see this change soon. Support groups are also so very important for people facing a new disease. And not just for the person diagnosed but for the family and loved ones as well. My boyfriend received a liver transplant and was very sick about 6 years ago when he was 20 and I was 19 years old and it was so difficult for me to face. I felt like my friends and family could not understand what I was going through. I suffered silently until I talked to a great counselor and she helped me to validate my feelings and talk things out – it was such a wonderful release to me. There are so many people out there who do understand and care. That is why I became a nurse. I hope your boyfriend can read these blogs too and that you will write more. I would recommend these blogs to any of my patients. Thank you so much for sharing your experience. I know you will also help a lot of people with your story.

  17. brahma
    brahma December 28, 2006 at 6:33 pm | | Reply

    I just got diagnosed today. I’m a private pilot and had to renew my medical exam and the examiner caught it and deferred me. Flying was the only thing that really defined me in this world. I don’t even know what the fuck to do.

  18. DAVID TRIF
    DAVID TRIF January 10, 2007 at 5:29 pm | | Reply

    I’m a 24 year old who was recently diagnosed with type 2 diabetes with no family history just over eating of junk food, obesity and non active lifestyle. 350 pounds 6’0 to be exact. I didn’t want to believe it for a second considering my age but it’s true. I first found this out during the holidays which after became the worst christmas and new years ever. That was my christmas present, to find out that i’m diabetic. I’m so pissed off about it that I decided not to do anything about it because it’s not fair. My life is over, ruined from this unfair injustice and I can sympothize with those who have type 1. I cried and cried as I read your testimonies and I was thinking wow, I’m lucky compared to you guys. I heard type 1 is worse then type 2 considering the symptoms and complications. I feel your pain, 24 hours a day. Mostly in my heart. I can’t stop eating, my hunger now is out of control, my vision is getting worse along with pains in my legs, feet, arms and hands. I’m so scared and angry at the same time that I don’t know what to do. All I do is cry about it. When I was younger I was very active and happy while living in Texas, always out there doing something active even if it was by myself I would practice martial arts and work up a huge sweat with bo staff practice. But now living in Portland Oregon is horrible, it’s always cold, it’s always wet and always depressing. I love Texas and I’m going to go back soon so I can atleast be a happier diabetic. It pisses me off when people claim they found a cure for diabetes. I just wanna hurt them with my 350 pound body. Diabetes cannot be cured. God may be our only hope. Maybe we should look to him for answers instead of looking towards false hope that these so called doctors feed us. I’m so sick of people saying we have to live with this curse, forget that! I would rather die. To hell with those who tell me otherwise. I don’t want to prick myself and bleed four times a day. Forget that. Besides I’m a 24 year old who lives with his mother with no money or ambition what so ever. Plus I’m a virgin which makes it worse because now I don’t care about that or anything else. I only care about sharing my story with others so they don’t make the same mistake I did. Don’t be like me. Get out there and do something. My name is David Daniel Trif and I am a 24 year old type 2 diabetic with no family history just a life long history of stupidity. It was too late for me but I discovered that there’s more to the stars at night then leading a way home.

  19. DANIEL
    DANIEL January 10, 2007 at 5:31 pm | | Reply

    WOW!

  20. Karie
    Karie October 19, 2007 at 2:55 am | | Reply

    Hi my son who is the love of my life was diagnosed a week ago with type 1 diabetes, he is thirteen years old. I was crushed, and still am. I have to get up for another week at 2am to check his sugar level until it’s under control. I hate this disease, but I will have to accept the fact that there is going to be ups and downs with it.

  21. whitney koppes
    whitney koppes May 7, 2008 at 12:33 pm | | Reply

    when was halle berry diagnosed with diabetes and impaired hearing

  22. Brunch: 11/19/2005 « Basil’s Blog

    [...] Amy (Diabetes Mine) has a story [via Jo's Cafe] [...]

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