Sunday, December 4, 2011

The Feeling of Failure

I don't even know how to start this blog post.

I feel like I'm not doing enough to manage diabetes. I need inspiration to get back on this damn horse and kick the shit out of diabetes and not feel like I'm not doing enough. I test, but not nearly often enough. I SWAG carbohydrates and how much insulin to use. My blood sugars are always swinging up and down.

My last A1c was a 6.8, but not because of tight control, and I can't be happy about it, because I force myself to go low and then correct the low. I don't know what I need to feel inspired again. I feel like I'm failing at this diabetes shit.

Wednesday, September 21, 2011

Open Letter

This is an open letter to the girl I love...

As I type this, my eyes are full of tears. You make me more happy than I could ever describe in words, but I'm going to try my best to make sure you know how happy you make me, and how thankful I am to have you as my girlfriend.

Just a few years ago, diabetes could have taken my life from me, and we would have never crossed paths. I think about that often, and just think of how glad I am that I survived it. Because not only did I pull through it for me, I pulled through it for you.

I lost my home to hurricane Irene, and your family took me in for the weekend. I love your family for that. All of you are so amazing. Thank you for being you, you are the most beautiful person on the inside and out. Thank you for being there for me when I couldn't stop crying. Thank you for being the sweetest, most beautiful, caring, adorkable girl in the world. I can go on and on about how much I love you for being in my life, but I'll leave that to my actions instead of my words.

Thank you Ashley, for picking my heart up off the ground and comforting it through such a dark part of my life, and making me see how bright the light truly is.

I love you.

Friday, September 16, 2011

Invisible Illness Week


Since it is "Invisible Illness Week", and I had nothing to write about, I decided to steal Kerri's idea and use it! 
1. The illness I live with is: Type 1 diabetes
2. I was diagnosed with it in the year:  2005
3. But I had symptoms since: About a month before actual DX
4. The biggest adjustment I’ve had to make is: reading all of the nutrition facts...on EVERYTHING.
5. Most people assume:. That I became a diabetic because I ate too much sugar.....
6. The hardest part about mornings are: when I wake up low.
7. My favorite medical TV show is: not sure if I even have one...my life is my own medical TV show.
8. A gadget I couldn’t live without is: My insulin pump
9. The hardest part about nights are: not waking up because of a low blood sugar.
10. Each day I take 1 pill & a billion vitamins.  2 pills, and continuous insulin....
11. Regarding alternative treatments I: a cure would be nice!
12. If I had to choose between an invisible illness or visible I would choose:  I like that it isn't out there for everyone to see all the time. But other times I'm proud of it and let it be known and not care :)
13. Regarding working and career:  I would love to work in a field that helps PWD's.
14. People would be surprised to know: I don't know. Hard to think of anything for this. Sorry!
15. The hardest thing to accept about my new reality has been: that there's a good chance that something Diabetes-related will kill me. 
16. Something I never thought I could do with my illness that I did was: Advocate. Stand up for something bigger than myself and give a voice to the people who can't speak for themselves. 
17. The commercials about my illness: bother me. A lot of them are so inaccurate....
18. Something I really miss doing since I was diagnosed is: being able to exercise or play sports and not worry about a drop in blood sugar afterwards.
19. It was really hard to have to give up: I can't think of anything I really "gave up"...
20. A new hobby I have taken up since my diagnosis is: blogging. I never would have imagined myself having my own blog.
21. If I could have one day of feeling normal again I would: oh man, I would eat so much damn food..now I'm hungry!
22. My illness has taught me: that living with it, with others who have it, makes a world of a difference!
23. Want to know a secret? One thing people say that gets under my skin is: "oh, you really need to take care of yourself!" DUH!
24. But I love it when people: are themselves.
25. My favorite motto, scripture, quote that gets me through tough times is: You can do this.
26. When someone is diagnosed I’d like to tell them: that they are not alone!
27. Something that has surprised me about living with an illness is: I went from feeling like I was the only one with this illness, to having so many friends because of it!
28. The nicest thing someone did for me when I wasn’t feeling well was: stayed with me and made me laugh when we were both low....my girlfriend is the best. <3
29. I’m involved with Invisible Illness Week because: I like to steal ideas from Kerri. :)
30. The fact that you read this list makes me feel: like you care about people with diabetes!

Saturday, September 3, 2011

My Brothers Basement

So here I am...living in my brothers basement. Hurricane Irene destroyed my house, and destroyed thousands of dollars worth of my families belongings. Hundreds of baby pictures, lawn equipment, kitchen appliances, furniture, everything. Luckily we got any medical supplies out, and moved all vehicles  out of the flooded area. This entire week has been devastating for my family. I lived in that house for 18 years, and just like that it was swept out from underneath me. The yard I played baseball with my brothers in, the yard I played frisbee with my puppy in. The yard I built massive snowmen in during the winter. Overnight my quiet, wooded, neighborhood turned into a "toxic neighborhood". Going down the hill and into my street is like entering a new dimension.

It's still unreal. My whole family is still in denial. When we go to our house, we do nothing but throw our personal belongings into dumpsters and cry. Eighteen years of memories are now over-shadowed and put to an end by Hurricane Irene. Because of the flood, the sewage plant down the street over-flowed and spilled rotten sewage into our street, filled my house with shit and destroyed everything. Everything the water touched turned into garbage. FEMA tested the air and the water in my neighborhood and discovered that there is 700 times the healthy limit of E-Coli in the water and air. Red Cross told us we can't even simply open a bag of chips and eat it because E-Coli will infect it within seconds.

Eighteen years destroyed by sewage, water, wind, and rain. It's very bittersweet going down that familiar road. It will never be the same, no matter how much fixing and painting someone can do. My childhood was destroyed overnight. Home is gone. I no longer have a place to call "home". I no longer have a place to sit down with my Mom and just talk about life. I don't have a place to go, where I can lock myself in a room and just forget about everything. I hate being separated from my family, although I know it's bound to happen someday, this is such a shock to someones system. I've cried a lot this week, I don't think I have tears anymore to cry.

Eighteen years of my life swept away in hours. Now it's up to insurance and FEMA what will happen to my street. Some rumors are that the town will buy my whole road and turn it into a dirt road. Twenty-Seven house were destroyed on my street. Twenty-seven families lives have changed and don't know what to do next. My parents are in a camper behind a gas station, and here I am....living in my brothers basement.

Friday, August 12, 2011

My Nightmare

When I went into a diabetic coma, and came out of it, it was a rough journey. But there was one part of it when I came out of the coma briefly and blacked back out. 

I woke up in a darkened room, tied down by thick rubber bands on my hands, feet, and another one across my stomach to keep me from moving.

I was terrified.

I remember screaming "where am I!? Is this a dream!? Why can't I move!? My mouth is dry! Get me out of here!"

I saw a silhouette of a male doctor walking around me, and telling me where I was and why I was there. He was assigned to sit next to me for my stay in that room. I never saw his face, never asked what his name was.

I don't remember much of what he told me, but it went something like this.

Me - (crying and begging) "my mouth is so dry sir, can I please get something to drink, I just need something'

Doctor - "I'm sorry sir, but all I'm allowed to give you right now is drops of water from this sponge"

He dunked a sponge in a cup of water and put it above my mouth, and let one or two drops of water fall into my mouth.

I wanted more.

Me - (begging) "sir, I love you, I seriously love you, can you please give me another, my mouth is so dry, I just want some water"

Doctor - (chuckling) "I know, I'm only doing what I was told to do, that's all I can give you at a time. Let's wait some time and I will give you more"

After that I don't know what happened, I assume I blacked back out.

The next time I woke up would be in a brightly lit room, with my Mother standing across from me with tears in her eyes. And that's when I started my recovery from a blood sugar of 1200, not for me, but for my Mother. It killed me on the inside to see her like that, just as I'm sure it killed her to see her 20 year old son half-dead.

Saturday, August 6, 2011

Silent Advocacy

Even though I've been in the DOC for close to a year now, I'm still new at the whole advocating, blogging,  and just being comfortable with whipping out my pump in public to bolus. When I was on MDI's I would hide every trace of me being a diabetic so no one would think I was some kind of freak. But being in the DOC has made me more proud of the fact that I am a person with diabetes. Let's face it, I think becoming a diabetic has made me a much better PERSON in general.

I was at Dairy Queen waiting for my friends to arrive. And I was rocking my "Diabetik" shirt which has this big needle on it. With a shirt like that I might as well been running around, flailing my arms screaming "LOOK AT ME I'M A DIABETIC AND I LOVE NEEDLES AND STABBING MYSELF!". So once my friends showed up, I stepped out of my car and started walking towards the building. There was a lot of people in line, most of which turned and stared at me, and I felt like it was because the shirt I wore stood out so much.

In that moment I didn't really mind that everyone was staring, I was doing "silent advocacy" by wearing that shirt. Because for the people that saw it, they saw a young, skinny diabetic. That in itself dispelled the myth that you have to be overweight, or fit a certain criteria to be a person with diabetes. While standing in line I explained to my friends how amazing the DOC is and how much it helped me, I showed them my pump and they were blown away at how amazing this technology is.

I did a bolus for the Arctic Rush I bought while I was in line, and I didn't even care that my 43 inches of pump tubing was sailing in the wind afterward even though there were people everywhere who could clearly see it. I'm proud of my diabetes, and I'm proud of everyone in the DOC who has helped me become what I am right now.

Diabetes may be my greatest weakness, but now it's also my greatest strength.

Saturday, July 30, 2011

Reflecting

Recently I was bored, and was looking through my photos on Facebook. I have close to two thousand photos, so I figured I might find something old on there that I didn't even realize was there. I clicked through a lot of photos up until I came across two photos that truly shows how awful I looked when I came out of DKA a couple years ago. When I saw the photos I couldn't help but just sit here and remember the way I felt.


In these photos I'm wearing special glasses that were about an inch thick. After my blood sugar coming down from 1200, my eyes became crossed and I needed these glasses to see clearly. I've spoken to eye doctors, and the doctors at Joslin and they don't have a clue what specifically caused my eyes to be crossed, and I haven't heard anything similar from anyone else yet.


I was only a couple years into being a diabetic when all of this happened, and I felt so alone. I felt like I was the only person in the world with Diabetes because I knew no one else with Type 1. I didn't know if I was going to have to wear thick glasses forever, or if it was temporary. I didn't want to hear jokes about my thick glasses, because the reason my eyes were so screwed up is I didn't know how to manage this vicious disease that could have taken my eyes from me at 20 years old.


Here I am. Now 24 years old, my eye doctors tell me my eyes are "perfect", and the doctors have nothing to say but that my eyes going from cross-eyed to perfect is a "medical miracle". Those photos above give me the motivation to do everything I can to never let that happen again.  

I've come a long way. It's amazing what the DOC could do for a diabetic. You guys sure did pull me out of something that I thought I could never get away from. And I thank you for that.

Friday, July 22, 2011

Resources

I brag about the DOC a lot with my nurse practitioner whenever I have my 3 month appointment with her. She's even told me that I am her "easiest patient to deal with" because I'm always looking to improve my life with Diabetes. I've explained to her that twitter is full of other diabetics, willing to lend an ear and help you with anything that they can. She told me she sees a lot of people my age that come into her appointments that are nowhere near as confident with their diabetes as I am.

That's when I saw myself.

For the first four years or so of me being a diabetic, I only showed up at Joslin Diabetes Center to get prescription refills and just wait until the appointment was over. I was a mess mentally. So when she told me that she sees people my age going through the same exact thing I felt obligated to speak up. So I offered her my e-mail to give to patients (if that's not legal, I don't know, it was my first reaction, oh well) if they needed to talk with someone who "gets it". Recently my nurse practitioner e-mailed me, and this was part of the e-mail.

"Would you mind putting together a list of online support groups that you know of and think are helpful?  I have a couple of patients who would really benefit from that."
So I asked some people on twitter for recommendations of what sites would be good to share with other diabetics. I put a list of about 7 different sites and sent it back. That I have seen, there isn't any visible resources for online social interactivity for Diabetics at Joslin, although they do have programs that help people. I think it would be cool if Joslin makes some flyers and set them up in the waiting area for people to take with them and check out at home. 

And to think, all those times I bragged about the DOC, I thought my NP was thinking how annoying I was being. I'm glad she took it serious and is considering sharing these very useful (and life-changing) resources with other Diabetics. As good as it feels to be the "easiest patient to deal with"...I don't want that title, I want to share that title with other patients at Joslin.

Saturday, July 16, 2011

It got worse?

I was at work, and for the first time since I started on the insulin pump a co-worker asked, "hey what's that tube looking thing?" I responded by saying "it's an insulin pump, I just started using it about a month ago". His response to that was, "so, did you get that because your diabetes has gotten worse?"

Instantly, in my mind, I was so annoyed! But I kindly replied with "no, this thing is actually IMPROVING the way I feel. This insulin pump has made my life with diabetes so much more easy to deal with by not having to constantly take injections all day long", he replied with "wow, that is really cool, I'm so happy for you!"

After that conversation I felt proud of myself that I didn't get an attitude, because he didn't know...he's not a  Type 1 diabetic. It feels good to teach someone something that they don't know much about, especially Diabetes.

Wednesday, June 15, 2011

You Can Do This

A lot of people have done videos for this, but it's just far too loud in this house for that. I don't know how to start this off, but diabetes sucks, to put it bluntly. I was diagnosed in 2005 at the age of 18, it had been only 3-4 months since graduating high school. When I was first diagnosed I was on top of everything, checking blood glucose numbers, taking insulin etc. But the longer it went on, I became aware of the fact that this was forever. All I thought about was death, amputations, going blind and every other complication that comes with it.

I looked at the negative side of diabetes and ended up being a miserable, depressed, rude person. I recently talked to my mother and told her, "for a long time I was very sad and lonely, because I was the only person I knew of that had Type 1 Diabetes, all I thought about was dying every single day." Even she said she couldn't tell, she had no idea how depressed I was. I never spoke to anyone about my depression, I would put on the "everything is ok" face and smile and laugh. But after, I would go to my room, put on headphones, listen to music and just wish I was dead. I thought about possible ways I could die. Overdose on insulin was the first to come to mind. The fact that that is so easy to do, and I thought about it so much is terrifying.

Being in that state of mind led to going DKA, my blood sugar was 1200 in the ER. And just thinking how big of a number that was made me feel like I didn't deserve to live, because I felt like I had nothing to offer anyone. I wish I looked for people to talk to, instead of distancing myself from my friends, my family, and being a rude, depressed person to everyone. Having that DKA episode made me realize I am here for a reason greater than myself, I don't know what it is yet, but I'm perfectly comfortable with it if that reason was to tell you that no matter how much shit you're going through and how miserable you are that there are people who understand, and You Can Do This.

Saturday, March 19, 2011

Every other time.

Whenever I read or hear about someone passing away because of hyperglycemia I always wonder what their blood sugar was at the time of passing. And I always feel so guilty, because I survived a 747 and a 1200 blood sugar. How much could the human body take? What if the next time I go into diabetic coma I don't come back? I hate thinking about the "what if's" of diabetes, but it's so hard not to. I'm normally very positive about diabetes, but just thinking of people passing away from their blood sugar being too high scares the hell out of me. I have the dexcom, but what if something happens in my sleep, it goes too high and I don't wake up. When my blood sugar was 1200, the only reason I lived through it was because my Dad had to come back home from work because he forgot something and saw my car, when I should of been at work. And when he picked the lock in my room he saw me laying lifeless. The EMT's had to carry me down a flight of stairs to the ambulance. Does anyone know someone's blood sugar at the time of passing? It just confuses me so much that I survived a 1200. That's astronomical to me. I never stop thinking about how lucky I am that my Dad came back home from work so early, because I would have been dead if someone found me any later. Sometimes, I really want to give up on diabetes because it's such a pain in the ass. But every other time I remember how fortunate and lucky I am to still be here.