The Day After

Yesterday I went for my 3 month check up. I usually try to get my blood work done a few days in advance. According to the lab, my A1C was 7.9. Not quite to the ADA's standards, but it could be a lot worse.  Dr. H was happy with me overall. No eye disease, no kidney disease-its been eight years so far.  I can be proud of myself and give my self major kudos for that!!!!!!!!! 

Seriously, living and dealing with Type 1 day in, day out, 24/7, 365 days a year, its not easy constantly monitoring what I eat, activity, etc, etc, etc, etc..........


Some days I just want to scream and throw away all these damn supplies.  Unless you are living with this, you can't fully understand the frustration that comes along with it. (So no judging!) I hate to sound preachy, but I can't tell you how many times I voice frustration, only to be told by someone who doesn't have T1 that it could be worse, at least you can control it, I could go on......


However, most days I just check my sugar, give my shots, and go on with my life.  Its become a part of me. ( I still don't like saying that....) Its not always convenient and its definitely  not pretty. I have become a stronger person for it. Yup, that's right you islet cell killer! 

Sugar's Siren Call

"Christiiiinnnaaaaa, come and eeeaat meeeee!!" That would be the evil call of Sugar. She calls me several times a day. "I can make you feeeel better. I can make your problems go awwwaaayy." Not really. Sugar, your so called promises of happiness and making things better are not true! Perhaps briefly you might make things better, but in reality, you do nothing good for me. You're sweet on the outside, but evil on the inside.

Note: This post is being published after I originally began writing it....


Yesterday, one of my roommates from college and I spent the day together. We had lunch at her house, then went to the mall. After the mall, we went to a Blue Rocks game. We got seats right near the dugout! We shared a funnel cake-yes, lots of carbs! I went to take a shot to cover the evil carbs and realized I had three (3!) units of Novolog left! Not cool. Needless to say, when I got home, my bs was over 300.

Pondering A Big Question

One of the biggest questions since T1D came into my life is: how do I deal with telling people who don't know me? Do I wait, get to know them, and vice versa? Or, should I just be upfront right off the bat? A big part of me wants to wait and get to know him/her. A smaller part of me says "just go for it. If they can't deal, that's their problem." You know those people who are naturally curious; they must know everything or think they know it all? I don't want T1D or any other health issue to be a focus of the relationship. Whether it is a friendship or dating, its hard to know if I am making the right choice. Many people like to jump to conclusions very quickly. He/she might begin the whole "my grandma or grandpa has diabetes. Or, I get the shakes sometimes."
There is a separate condition that causes low blood sugar, but that is NOT diabetes, one OR two.  I don't know what is so hard to understand about this. As I'm writing this, I'm thinking to myself, "why does this bother me so much?"
I know just because I don't like to immediately tell people my health issues doesn't mean they don't want to tell me. For whatever reason that might be. Pity, sympathy, or whatever.  Personally, I'm not into pity parties.  I can throw my own if I feel like it, lol. An empathy party is better.

Any thoughts or insight would be welcomed. Thanks for reading!

Christina Lynn <3

These Are A Few of My Favorite Things...

No, I am not a fan of The Sound of Music, but instead of talking about T1D and immune systems gone awry, I will tell you more about me.  There is more to me than having diabetes. And there is more to me than designer clothing.  Don't judge!! Sorry, but I had to say it! Sometimes you have to read between the lines..............

Likes (in no particular order)


Leopard prints
Purple
Apple products (Macbook Pro, Iphone)
Designer handbags (Coach, Juicy Couture)
Uggs
Fictional novels
Biographies on Marie Antoinette
Comedies on DVD (I <3 Lucy, Two and a Half Men)
Driving

                   
                         Being goofy with my friends, like Ethel and Lucy!



Dislikes (in no particular order)


Math
Science
T1D
Celiac Sprue
JRA
Boredom

Sorting Out Emotions

When you are first diagnosed with ANY type of chronic condition, some of the first feelings you experience are anger, denial, sadness, fear, etc. Its a process of grieving. You are grieving for the person you were before the diagnosis.  You want life to go back to the way it was before. The likelihood of that happening is probably zilch. So now you must figure out how you're going to deal with the newest card Life has dealt. You might have seen it coming. I didn't. Well, I knew something was wrong. I didn't want to think it was majorly life threatening.  My bad! After I had the colonoscopy in January of 2004, my symptoms of thirst, hunger and fatigue left me.......I thought.........for good.  I know now I was in the Honeymoon stage. Some honeymoon. Usually, at this point, people have already been diagnosed, and they are prepared to deal with this temporary break. Mine lasted two weeks. After that, it was all downhill from there. 

In The Absence of Testing Strips

Since this past Monday, I have been without testing strips for my Freestyle Lite meter. Not good. I don't like it when I can't use my meter. One time, when I was in college, the battery on my meter went dead. Again, not good. The reason why my prescription ran out early was I checked my sugar more than 4 times a day.  Sometimes I check it randomly, or before I begin driving, but the main reason I test more than I should is because I am no longer able to tell when my sugar goes too low. Aka. hypoglycemia-low blood sugar. This could be from 51, 60, 45. My lowest--at least that I know of--is 27. Holy cats!! The medical term for this is hypoglycemia unawareness. This is one of the scary parts of T1D.

http://www.diabetes.org/living-with-diabetes/treatment-and-care/blood-glucose-control/hypoglycemia-low-blood.html
Scroll down towards the bottom of the page for more info.

Everyone should learn this info, especially if you know me personally, or someone else with T1. You never know when it might save our life!

**Saturday I should be able to get this thing filled and this crisis will be over!
** I have been able to check my sugar at least once a day with another meter. I wouldn't recommend it though. But these things happen-unfortunately. I wish they didn't. 

To tell, or not to tell, that is the question!

Not everyone wants to be up front with their condition, especially when first meeting someone. There are a lot of misconceptions and myths out there about T1D. (And Type 2, for that matter.) Whether that person is a potential friend,  longtime friend, boyfriend/girlfriend, one can never be sure how he/she will react. Most people will say something like "oh, that's where you can't have sugar, right?" Or-my personal favorite, "my grandma, friend, cousin-or whomever has that!" Yeah, yeah. I've heard all that before. Everyone has heard that line before! Knowing someone with diabetes, One OR Two does not make you an expert in insulin, carbs and testing. Just for kicks, the next time someone starts telling me how to live MY life with T1D, I'm going to go all Quizmaster on them:

1 . Give me the names of 4 insulins-long or short acting.
2. What does CGM stand for and what does it do?
3. DKA stands for.........
4. Why is DKA dangerous for someone with Type 1?

I think this is where they get defensive and I can tell they haven't got as much knowledge as they thought. If someone wants to prove me wrong, that's fine. Please do! I would feel a lot better knowing you are correctly informed.

*****This particular entry was inspired by reading one of the most offensive conversations I've ever read about someone with Type 1. (This was on a FB page for Type 1.) Two girls were talking about the first girl's boyfriend, who is now using a pump. Basically, she  made him sound like a mentally handicapped person who has been rehabilitated. "Now that he has a pump, he can live a normal life and interact with others!" Excuse me people, this does NOT fly with me. The kicker was at the end, when Girl #1 told her friend she didn't see the relationship working out. Girl #2 agreed, saying how he didn't fit into her lifestyle. FAIL.

Its 4:25 and I can't sleep-so.........

Sometimes I get so frustrated when the subject of diabetes, 1 or 2, comes up in a conversation. Who ever brings the topic up, them or me. It dosen't matter. The almost comical part is when someone says something like "too much sugar causes diabetes." Or my new personal favorite "its not that bad. It could be worse. You could have cancer." Or something along those lines.

Here is a news flash. Type 1 diabetes can kill. I'm not exaggerating. It is a fight every single day to survive.  Some days are easier than others. I'm not trying to sound bitter, but these are the facts. This is the reality for thousands of people in the US and around the world. We fight to keep our sugar under control so we don't develop kidney failure or go blind. Or develop nerve damage.  This is not easy. Controlling T1D is a full time job.

We--and I speak for all people with T1D OR T2D-- eat and drink things we shouldn't. Luckily, the insulins currently on the market allow flexibility. But DO NOT JUDGE US. Because you have NO idea what we go through each day. I don't care if you have a nursing background or your grandmother has Type 2!!! Until you are actually diagnosed with either diabetes, you simply cannot know what its like. You can make all the comparisons you want.

Right now I'm more sensitive to the crap people say about diabetes because a family member of mine who was diagnosed with Type 2 five years ago was told he needs to be on insulin. And there were major complications because of that.

Ok, I need to try and sleep again. I needed to get some of this out there. I know from reading other T1D blogs that I am not alone in what I am going through or the issues and prejudices I face.  Its harder though, coming from your relatives and people close to you. They can't know what its like...........

My Bucket List-In No Particular Order

1. Take a Caribbean cruise
2. Visit Versailles 
3. Swim with dolphins
4. Write a book
5. Publish that book
6. Buy a house on the beach (or near the beach)
7. Live in New York City or Philadelphia 

What I wish I had known on-and after- 3/27/04

Dear Christina:

You will survive this difficult time. You will not die. Your goal of going to Wesley will happen. It will take a little longer to graduate, but you will make it happen as well. Being a person with Type 1 is not easy. Getting T1D under control is--as your endo will tell you--"one of the hardest things you will ever do."

You will get angry and frustrated with yourself when your BS (blood sugar) is not in the target range 90-150. People will say "you can go on pills!" They probably mean well, but they are misinformed. Comments such as these will drive you bonkers. You will try to help set the record straight by writing a blog on T1D.

FYI: T1D is a full time job. The clock is running 24/7. You can't take a vacation and forget your portable pancreas (lancets, testing strips, meter, insulin pens, needle tips. And always bring back ups!) Of course, having said that, there will be instances when all hell will break loose (hehehe)........such as a visit to New Jersey to see the relatives, you will realize you DON'T HAVE YOUR FREAKIN testing strips!!!!! And other incidents like that. Noooo biggie!

Signed,
The Pancreas Grim Reaper

PS. SO sorry I had to kill the insulin producing beta cells!
PPS. Nah, I'm glad I took it.
PPS. I'm evil, deal with it!

How it all came about (Part 1)

Sometimes, I think about what could have been done differently in the diagnosis of Type 1 diabetes.  I can't help it.  Had I been diagnosed sooner, I would have had time to process the reality of the situation and dealt with it more calmly. At least, that's what I tell myself. Of course, I'll never find out. No, having Type 1 is NOT the end of the world, thanks to the invention of insulin in 1922. Before then, Type 1 was a death sentence. It almost was for me, thanks to a negligent nurse practitioner.

Towards the end of 2003, I was taking classes at the state community college. My mom wasn't doing so well. I figured stress was the culprit of my increased appetite and fatigue. Oh, and I losing weight, bit by bit. My doctors agreed with me that I was overwhelmed. I wasn't sleeping well and my body was out of whack. Boy, was it ever! And things would only get worse before they could get better.

To be continued-

Check this link out of you want to learn more. http://www.nobelprize.org/educational/medicine/insulin/discovery-insulin.html

Dia-beee-tus, Dia-bet-es or Dia-betic?

When I visit the Type 1 online communities and blogs, there is talk about the 'proper' way to pronounce diabetes. Walter Brimley is often mentioned--"You check your blood sugar. And you check it often!" I remember before I was diagnosed I saw those commercials and wouldn't think a darn thing about it.  Afterwards, I would laugh ironically. After being diagnosed with JRA when I was 10, I really thought I was done with autoimmune diseases. How naive of me to think there is a one autoimmune quota! The thing with autoimmune diseases is once you have one, another is likely to follow.  It reminds me of a domino effect. Cause and effect. One thing influences another.  The JRA led to T1D.  T1D led to Celiac Sprue.  I hope 3 autoimmune diseases are my official quota!!!!!

About 2 years ago, when I was in college, I was diagnosed with Celiac Sprue. It was hard enough with the diabetes! How the heck would I possibly deal with yet another health problem??  I've got to say, I am currently very concerned about the possibility of yet ANOTHER freak** autoimmune attack resulting in yet another specialist to see. I just saw my rhumatologist for the JRA and I asked him while we were discussing my blood work whether there were any signs of funky immune system behavior going on. (Ok, I didn't use those exact words....but still.)

Ok, I got off the subject. I was actually going to tackle autoimmune conditions in another entry.  Oh well. Life is short. Expect the unexpected. 

The real cause of my insomnia

I'd like to begin this entry with a short piece of conversation between my endo and I during a visit.
ME: "I am still having problems getting to sleep."
HIM: "That's because you're afraid of going low during the night."
ME: "No, I think its stress and worry that's mainly keeping me up."

At the time, I couldn't-or didn't want to-comprehend that I might afraid to go to sleep. I mean, who is afraid to drift into la la land?
Me, apparently. Terrified. Subconsciously, at least.   I am rarely able to fall asleep until I know my sugar is in the low 180's. Which is actually a little higher than what I aim for. (90-150 is the range for me.) Everyone is different. Non pancreas challenged people are in another range altogether. Hmmm, I like that phrase. 


The lowest-at least to my knowledge-that my sugar has been is 27. Not too far from 0. Which means I'm at very high risk at that point for a seizure or dying. Scary as h***. Luckily for me, and those around me, I seem to have a very high tolerance for LBS (low blood sugars-aka. hypoglycemia).

One morning, I woke up with my internal alarm bells blaring. I didn't even have to check in with my meter to know what was going on.  Heart pounding. Fingers shaking.  Anxiety. But I also had to remain calm and focus. I got downstairs and grabbed the first thing with sugar I saw.  Boy, was I relieved when that sweet sugar hit my bloodstream! Big breath out.

I don't carry around a glucagon pen-its about $100 from the pharmacy. They also expire. And someone--not me, obviously--needs to know how to use it. (This is one shot I will never have to give myself!) I always try to carry around glucose tablets or some form of sugar.  Or money, in case I should need to grab a snack.  The more options I have, the more secure and safer I feel.

I also know that I am not alone with this feeling. Other pancreas challenged people, mothers and fathers with kids and babies stay up to make sure their child hasn't gone low during the night.  I can only imagine what parents of babies with T1 go through. Babies can't tell you they are having a low or high sugar.  I hate this thing!

Myths & Misconceptions concerning T1D

Notice I am focusing on Type 1 diabetes. NOT Type 2, which has nothing to do with T1.

MYTH: Eating lots of candy while "gives you" Type 1.
Fact: T1D is an autoimmune disorder. An attack occurred on the pancreas so the insulin producing beta cells all died. 


MYTH: You can take pills for Type 1. (ha!)
Fact: No way, no how, can a person with Type 1 take pills.  Its insulin forever!

MYTH: Only kids can get Type 1.
Fact: I was diagnosed when I was 19. Nowadays, more adults are being diagnosed with T1.

MYTH: T1D's can't eat sugar.
Fact: WITHOUT sugar and carbohydrates, you die. End of story.

MYTH: T1D's are all skinny.
Fact: There are some T1D's who are not skinny.

MYTH: If you are diagnosed with T1 as a kid, you will develop T2 later in life.
Fact: Once diagnosed with T1, you remain a T1 the rest of your living days.

Personally, I'd like to kick the sh** out of T1D

It seems just about every person with Type 1 has composed a letter to his/her pancreas.  I did that previously, but I ended up deleting it. (See previous blog entry.) Of course we all have something to say to this organ which is a part of us and at one point in our lives, made everything SO much easier.  For some reason that we don't know, our immune system decided to make the pancreas history.
So here goes.

Dear Pancreas:

So its been 8 years since you went belly up on me. Did I make you work too hard? Honestly!! I think you and my gallbladder were in cahoots with each other! (I had my gallbladder removed in May of 2003.) Seriously, did you two discuss retirement while allll the other organs were hard at work? That's not cool.
You know what else is not cool? Attacking the insulin producing beta cells. These ARE the most important cells in the Islets of Langerhans. Beta cells produce the insulin, you know. Now the poor alpha, delta and C cells (which apparently have no function) are left by themselves.

That's all for now, but you will be hearing from me again!

P.S. I'm curious, do the C cells just hang out in the Islets all day? Lazy bums, if you ask me.

Writing is the best therapy

Years ago, I tried blogging about T1D on Facebook, but every time I wrote a new blog entry, I would end up deleting  it. People would ask questions, and I just could not bring myself to go into detail.   I wanted to be open and honest about my feelings regarding T1D and my other health issues, but I could not bring myself to do that.

 Now I am proud-I need to toot my own horn just a little here-that I can blog and keep a FB page also entitled "Living the Sweet Life since 2004." A bit cliche for a diabetes blog, but oh well.  Small steps, bit by bit. Even now, it is hard for me to write about T1D, but I'm making progress with this blog, right?
But I do feel better just writing a blog entry and/or posting a new status on FB.  I guess you could say its kind of like a therapy for me. I tried counseling soon after I was diagnosed with T1D, but the psychologist really wasn't able to help me much.  It was too soon, I guess. But that's a story for another entry. Perhaps the next one.

Thanks for reading!

Time is the great healer?

This past March marked my 8 year anniversary living with Type 1.  So far, (knocks on wood) I have avoided major complications such as DKA and all that scary stuff.  So I'm proud of myself for that. However, I still have a long way to go-as in the rest of my life.  I hear how the insulin pump is great and will help make things easier. So why, you might think,  haven't you gotten the damn thing already? My retort to that is I haven't felt ready and you can't rush these things. During my past visit to the endocrinologist (specialist who deals with endocrine disorders; diabetes, thyroid, etc)  the good doctor made it clear he was not happy with me. I believe I made it clear I wasn't thrilled with him at the moment, either.  He wants me to get a CGM-continuous glucose monitor.  Once again, I hear how much it will help me and how good it is. But the idea of going around with a pager like device attached to me is not that appealing. 

Not so Sweet

As  I said on my FB page, life hasn't been so sweet lately. Right now I'm coming down from a HI blood sugar. For those of you who don't know what that means, basically the reading was too high to register on the meter. I'm guessing over 500. UGH. Controlling T1D has been VERY difficult lately. I've also had joint pains particularly in my hands in the AM, and sometimes at night. I"m blaming that on the weather!

From the beginning....a quick recap

I was born two months premature and I have always been thin. When I was 8, my teachers told my mom that I was limping and walking funny. Thus began the Search. It took a few years to get a proper diagnosis. I went from one specialist to another. I was 10 years old when I was finally diagnosed with Juvenile Rheumatoid Arthritis. Many people, including my parents and family, did not know kids could develop JRA. 


I went on Naproxin and Methotrexate-no needles-yet! That will come later. It took years to get the JRA under control. Yet I still took ice skating lessons, roller skating lessons, etc. Swimming was a big part of exercise. There were physical and occupational therapy sessions as well. Sometimes, I didn't mind the PT sessions, I got to use a trampoline and an exercise ball. OTHER times, I called it Pain & Torture!


When I was 17, I had to have surgery on my jaw because I had TMJ-due to the arthritis. The surgeon also took out my wisdom teeth-so I haven't had to worry about them since!! About a week later, I began my senior year of high school......with a puffy face!!!! arghhh......but you know, I did survive!

CGM

Part of my reason for writing this blog is so I can educate people and address misconceptions about Type 1 diabetes, celiac sprue and JRA (known as Juvenile Rheumatoid Arthritis.  I would like to hear your questions, comments and perspectives, but Please keep them positive. Thanks!

Soon I will be testing out a device called a Continuous Glucose Monitor. It is not an insulin pump, though at some point in the future I will probably use one of those.  A CGM is about the size of a pager  which will receive signals from a sensor that I will be wearing all the time. My endocrinologist and I  are hoping this will be able to help track my sugar levels better to see patterns or sudden changes.  

One very important reason for my getting a CGM is if my sugar drops suddenly in the middle of the night the CGM will alert me in case I don't wake up. So far, I've been lucky. But I have woken up to sugar levels in the 3o's!! Not my favorite thing in the world......

Testing, testing, 1,2,3

Its true people take for granted what they have, until they don't have it any longer. I used to eat what I want and 8 years ago when I was 19 I was told I would have to change my eating habits. As many people who know me are aware that I haven't made hardly any changes at all since being diagnosed with Type 1 diabetes 8 years ago.  (Type 1 is sometimes referred to as Juvenile Diabetes. Those who have it MUST take insulin. There are no pills for Type 1. You also cannot lose weight and be cured as people can with Type 2.

Part of my reason for writing this blog is so I can address misconceptions about Type 1 diabetes, celiac sprue and JRA (known as Juvenile Rheumatoid Arthritis.  I would like to hear your questions, comments and perspectives, but Please keep them positive. Thanks!