Baring My Soul

Over this past month I have had four instances where people (diabetic and non-diabetic) have made comments to the tune of: "It's not that hard.", "I'd make a good diabetic, I already eat like one should.", "It's easy for me.".  Although these comments weren't meant to be hurtful or degrading, or even aimed specifically at me, I took them as if they were.

For the first time in nearly a year I find myself wanting to crawl under the covers and cry myself to sleep and never come out.

Is it really easy for other diabetics?  Am I just a terrible failure? 

Of course I know it's not easy for most diabetics.  It never has been for me, and I have spoken with countless other diabetics who struggle just as much as I do. 

For me personally, I struggle because diabetes requires certain qualities that I just wasn't born with, nor have I ever been able to cultivate them within myself.  Self-discipline, will power, a militaristic mentality.

I was born as what you might call a free spirit, a rebel... everything a diabetic shouldn't be.

Diabetes comes with a lot of "rules", and demands routine, ritual, sacrifice, restraint.  All of these things go against my core.  You give me rules, you demand things of me, and my first and most powerful instinct is to resist, to fight.  You tell me no, you tell me I must stay away from something, I just become more determined to have it. You give me things I must do, and a schedule to do them on...I will die of monotony, it will drive me insane and make me feel trapped like a wild animal.

My thinking is that those diabetics that say it isn't that difficult, that they find it pretty easy to stay "controlled", they are the people born and raised with the qualities needed to succeed at diabetes care.
And those of us who struggle everyday, we are the ones born lacking those qualities.

I have spent everyday fighting.  Fighting the system, fighting diabetes, and most of all, fighting myself. 

I am the most self-destructive person I know.

I have tried, am still trying, to change my core, to alter my own psychology.  I have tried to build self-discipline, will power.  I have tried to live to the rules and schedule a diabetic should follow.

It is exhausting to live against your nature.  It wears you down, it makes you feel alien. 

I just feel....wrong.

I must do it, though.  If I don't I will die.  I'm already half-dead.

Honestly, I have spent a lot of time thinking about death.  I have considered my options:

1. Change who I am and live healthy and to old age.
2. Continue being myself and die slowly, one piece at a time, and in a ton of pain.
3. End my existence...

It's not difficult to follow the "rules" of diabetes.  What's difficult is the constant battle against yourself.  Fighting the temptation, fighting the urges, the constant self restraint, self sacrifice, the constant feelings of failure...

I'm tired.  I'm exhausted. I want to be me!

It's times like this that I realize how very much I hate myself.  Why can't I do things right?  Why was I born so unequipped for this disease?  Why must I always choose to do what's worst for me?

Why can't I take my bullheadedness and rebellious nature and use them to be a good diabetic?  Why must I always have the urge to hurt myself instead of help myself?

It's like having a weapon and either choosing to fight the enemy or kill yourself.

"Oh, oh, oh!  I choose 'kill yourself!'"   How dumb is that?

I'm already committing suicide.  I've been doing it since my diagnosis.  A very, very slow suicide.

Psycho Love

I love psychology.  I study it through every means possible.  I've taken classes through the local community college as well as studying through online sources, books, discussing with others who are more educated on the subject than myself, through observing people, etc..  I am just fascinated by the human mind, behavior, and how emotion plays such a huge role in our behavior and thought processes.

Think about it.  When you met the love of your life (or someone you thought might become the love of your life) what made you think they were special?  As time went on what confirmed this...or changed your mind?  How did your own emotions lead your thoughts and actions?  Anger, frustration, heartache, made you think again about how strong your relationship was?  Love, happiness, emotional fulfillment, made you think the relationship was strong?  A roller-coaster of emotions kept you changing your mind over and over? 

It's not so black and white, is it?  Because emotion isn't everything, there are so many factors in why a relationship makes it or fails.

I met my husband for the first time over the phone.  But let me tell you about when we met face to face for the first time...because face to face meetings have so much more impact on whether a relationship takes off or not. We met at a park in Fresno.  I had chosen a public meeting place because safety had been so instilled in me.  I arrived first and waited for him.  He was late and I was considering leaving, thinking I had been stood up.  But then there he was.  I watched him approaching me.  I remember thinking he looked both nerdy and handsome.  He was wearing a white button shirt and tie (I don't remember what color or design the tie was), and black slacks and shoes.  His glasses were thick and a little outdated in style.  He had a pen in his shirt pocket and was wearing a beeper on his belt.

He introduced himself and I was reminded of why I had agreed to meet him.  He spoke well and had a voice and personality that just turned me on and relaxed me. He then apologized for being late and explained that he had been at work and couldn't leave until business was taken care of.

We spent some time talking and getting to know each other.  I liked him more and more and felt a connection that I, even today, could not put into words.  It was emotional, it was psychological, and it was physical.  I had never felt this with anyone before and when I looked into his eyes I just wanted to hold him close forever.

What was it that attracted me to him?  His voice and the way he spoke with confidence.  His clean cut and professional dress.  They way he spoke of his family and how important they were to him. The way he looked me in the eye and really listened to me and made me the center of his attention.

But any of these things could be done by anyone.  Why was it he who made me swoon?  Why was it he who I felt such a powerful connection with?  Why was it he who I felt I needed to be with forever?  Timing?  Maybe I was just in a place where I needed all the things he was offering at the moment.  Maybe the moon was in the right position and our cosmic whatnots where aligned just right for the connection.  Maybe some voodoo princess was poking our dolls just right.  Who knows?

Our first official date was a trip to his house in Selma.  He introduced me to his mom and brother and I remember feeling even closer to him and also feeling special because he valued me enough to want his family to meet me and me to meet them.  I felt included in his life.  We watched The Wedding Singer and cuddled on his couch.  On the trip back to my place we talked about the future in general and he told me he thought I was someone he could marry.  It wasn't a proposal by any means, but it did tell me that he felt the same about me as I did about him.  From that moment on we were set in stone.

What made him so special?  He was just an average guy by all means.  What made him stand out to me?  He noticed me, really noticed me.  He paid attention to me and let me know he cared and thought I was special to him.  He included me in his already busy life. He needed someone and chose me to be that someone.

What made me decide our relationship could go somewhere?  That connection.  That indescribable feeling, knowledge that could not be put into words even if I tried for a million years to find the language. And, of course, that physical change I felt deep in my core every time I saw him or heard his voice...or thought about him.

To the outside world, our partnership seemed different.  Everyone seemed to be warning us that things were moving too fast.  They wanted us to step back and breathe and take our time.  They wanted us to make sure we were right for each other, make sure it would work.  They seemed to be seeing something totally different from what we were seeing and feeling.  They had yet to find out what we already knew.

By no means was our relationship free of struggle.  We came from two very different worlds.  He was Mexican-American and I was an all-American white girl.  He was Catholic and I was Protestant.  He was small town raised, I was city raised. He was outgoing, I was introverted. Even in our new found sugar-coated stage of love, we had disagreements.  We hurt each other fairly easily.  Why?  Because that is how life works.  We were connected but still individuals with our own minds, hearts, and desires.  No, absolutely no, relationship is without conflict.

The thing I think we struggled with the most was communication.  I was young and new to romantic relationships.  In my immature mind a man in love should just magically know what his woman wants and needs.  Is that too much to ask? Really?  *sarcasm*. He didn't think it important to share EVERYTHING with me. We had no idea how to talk or not talk, convey needs and desires, or respect privacy.  It took a lot of time (years) to work the communication conundrum out. 

The making up part was fun, though. 

It didn't take long for us to decide to become engaged.  Remember, we had sealed our fate on our first real date. Ha! I'm a poet and didn't know it! ( <-- Scarlet Pimpernel reference). It was about six months after we met that he officially proposed.  It was Valentine's Day, 1999.  He had a ring and got down on one knee, the whole nine yards of tradition.  It was romantic and special.  Obviously I said yes.

We both loved having picnics at the park or on our living room floor.  We loved watching movies together.  We loved staying in bed and talking, messing around (non-sex), messing around (sex), and just relaxing together.  We loved each other.

We told each other "I love you" all the time.  We hugged and kissed a lot.  He opened doors for me.  We held hands when walking together or sitting next to each other.  He bought me things, food, roses, stuffed animals, jewelry, etc.. I knew he loved me even though there were times I felt he didn't show it.  There were plenty of times that I felt neglected, unwanted, unloved.  But even though I felt this way, I knew it wasn't his fault (at least not completely) but the fact that I needed to remember that we are two different people...and two different genders. It is not his job, even as my soul mate, to make me the center of his universe. He needs his own time, just as I need mine.

He always took care of me.  He's always been there for me.  I've had a lot of health issues and he's never left my side and always did what needed to be done to help me get better.  I've always tried to encourage him to realize his potential.  He struggles with deep feelings of failure, inferiority, and worthlessness.  These feelings are totally unfounded and just hold him back.  I know he is so much more than he thinks he is and I have never stopped trying to get him to see what I see in him.

Our relationship has grown and become stronger and stronger because no matter what we've been through, we always learn from it, we always lean on each other and hold each other up.  And when we look back over the years one thing stands out above everything else: Through the darkest days we were always side by side, we were always there for each other, we were never alone, never abandoned, never left to fend for ourselves...we had each other.

Before I met Lee, I had been in a couple other relationships but they lacked depth, maturity, love, and any connection.  Before I met Lee, I felt alone, invisible, unimportant. After I met Lee my life improved tenfold. The world didn't get better, finances didn't improve, hardships didn't disappear.  But now I had someone to strengthen me and help me through it all, and offer a shoulder to cry on.  And I returned the favor.  That's what it's all about.

I feel our connection the most when we are alone together.  Simply hugging.  I feel his familiar chest, hear his familiar heartbeat, and body heat, and breathing. I smell his familiar scent.  It brings me to tears of joy and love.  To know I have someone who chooses me over all others, who loves me with a love that can not die.  And I love him just the same.  Nothing can top what we have.

I think the only way to describe the psychology of this is a snowball effect.  Whatever kicked it into action, it just grew as it rolled along and now it's too big to stop.  I'm OK with that, I like this thing we have and I wouldn't try to dissect it, diagnose it, or label it in any way.

TuDiabetes.org

In April of this year (2014) I joined a social media site called TuDiabetes.org.  This site was started with the intention of bringing together diabetics of all types and those people close to diabetics who are impacted by the disease as well.

I joined the site because I have spent my entire life at odds with my disease and the constant struggle, hatred, stress, and rebellion had taken it's toll and left me beaten, broken, and on the verge of death.  I knew I needed help, support, and understanding in order to improve my life, psychology, emotional state, outlook, and physical health.  I needed people who understood my struggle, who could relate and give me hope and advice.  People who could help me stand and be strong.

It was the best thing I could ever have done for myself to join TuDiabetes. 

TuDiabetes.org is a program of Diabetes Hands Foundation and was founded by Manny Hernandez (a diabetic) and his wife, Andreina, in 2007.  The site offers many options to help diabetics improve themselves, find information, friendship, understanding, and so much more.

When you join you will first create your own profile where you can offer any information you are comfortable sharing such as what type of diabetes you have (or your family member if you are not the one with diabetes), what you are looking for on the site, such as information, people to relate to your struggle, etc., what tools you use to manage your diabetes, and any other information you want to offer.

Your profile page is customizable just like many other social media sites offer.  And the site offers many ways to interact with other diabetics and those close to diabetics.  You can post blogs about your experiences relating to diabetes.  You can join in on discussions about so very many diabetes topics such as pumps, injections, highs and lows, complications of diabetes, coping emotionally, and anything else you might want to discuss.

The site offers special events such as live interviews with doctors, organizations, advocates, etc.,

There are groups available on the site you can join where only specific topics are discussed.  Groups can be about anything diabetes related such as those suffering with neuropathy, or women with diabetes, or those following Dr. Bernstein's teachings, or diabetics with retinopathy, or diabetes and pregnancy, and so, so many more groups.

You can post photos and share videos on the site.  You can make so many awesome friends who are just like you and fully understand what it is like to be a diabetic or live closely with a diabetic.  This is an amazing thing, a very special thing, to have so many others who are going through just the same things as you and are so willing to help, share their knowledge, and just be so very supportive.

Right away I was greeted by many members who welcomed me and offered understanding, support, and friendship.  And over the months that understanding, support, and friendship has not waivered, in fact, it has grown.  I have joined in on many discussions and learned so much.  My health and emotional outlook have both improved immensely because of the tips, support, encouragement, and education I have been given.

At about the same time that I joined TuDiabetes, I had decided to write on my blog about my life with diabetes.  Because of the encouragement and support from my friends on Tudiabetes, my blog has grown and improved and I have been able to share my knowledge, experience, encouragement, and reach out to other diabetics who are struggling and just need to be able to find others to relate to and find knowledge and support in.

If you are a diabetic or close to a diabetic, then you will find understanding, support, and knowledge at TuDiabetes.  This site will make your life so much better.

I Am Not Normal

A bit of a rant...the following is my own personal opinion.

My entire life I have been told by friends, family, and even doctors that I can "live a normal life".  That is a very loose term if you look at it from the point of view of a diabetic.  What the hell do you mean by a "normal" life?

I don't see "normal" people having to check their blood sugar a minimum of four times a day.  I don't see "normal" people having to take six shots a day.  I don't see "normal" people having to severely restrict their diet in order to avoid high blood sugar, serious complications, and death. I don't see "normal" people suffering severe lows or highs and the frightening effects they bring with them.

So, no, a diabetic can not live a normal life.

If you're talking about normal as in I can grow up to be whatever I want...that's not even true...a diabetic can not grow up to be a non-diabetic.  That was my dream, "when I grow up I want to not have diabetes anymore".  I also wanted to join the army/navy/air force/marines but they wouldn't take me because I was diabetic.  Not even for a desk job.

If I had only been told the truth as a child....

When I was younger I struggled with feelings of being different, of being not normal.  So of course the adults around me comforted me by saying I could still grow up and live a perfectly normal life as long as I took my shots and checked my blood sugar and kept it in line.  I could eat like a normal person as long as I bolused properly.

I don't know ANY diabetic that this works for!  Taking huge amounts of insulin in order to be able to eat "normally" is just killing us all.  We can't eat like "normal" people, we must live by a different diet.

If I had been told the truth instead of having my future made to seem less "not normal".  I think I would have had an easier time of it.  Instead I became an adult and the harsh reality of never being "normal" hit me like a ton of bricks and sent me into a deep spiral of depression and anger.  And any hope of me actually trying to take proper care of myself flew out the window and it took nearly dieing of heart failure at 34 years old to send me crashing into the realization that I need to change my life and stop trying to be something I can never be.

Normal.

It is true that a diabetic can be happy, fulfilled, and live a long, healthy life.  But I wish doctors, other diabetics, organizations, etc., would stop sugar-coating it.  We are bombarded with the idea that we can just go about our lives as if nothing is different for us.  So many diabetics I know (including myself until recently) are so dead set on being "normal" and especially with being able to eat "normally" that we are just pushing ourselves into an early grave preceded by years of diabetic complications. It doesn't help that there is so much misinformation out there about what is "healthy" for a diabetic; but I won't go into that highly controversial end of this subject.

If you truly want to be a healthy diabetic and avoid complications of diabetes then you need to face the fact that you need to be on top of your diet, medication, glucose monitoring, and all other aspects of care, ALL THE TIME. No breaks, no vacations.

Face the fact that we shouldn't eat like "normal" people.  Our bodies are different, our condition requires us to live differently.  This doesn't make us less human.  Diabetes is not easy to control and the fact that we are not normal people means it is not logical to insist on living like "normal" people.  We can be healthy and happy just like anyone, but we have to face the fact that we must do certain things differently.  This doesn't diminish us or our lives or happiness, we just need to do things with more thought and care (and work) than other people.


So there is no living like a "normal" person.  Normal for us is diabetic.

What Goes Up...

I've been raving about how good things have been going for me lately.  After many years of nothing but bad things happening, I finally had hit a good patch and everything was coming up roses.  Well, of course as soon as I let my guard down and give in to the goodness and let myself feel good and happy, it all comes crashing down around me. 

After nearly eight years of not being able to see an endocrinologist, and over a year of actually trying and fighting to see an endocrinologist, I finally got an appointment. I was so happy, relieved, and excited to see this doctor after so long without care.  I had a month long blood sugar profile ready to hand over, I was eager to request a CGM, I was eager to talk to someone who knew my condition and could help me to better care for my diabetes.  I was ready.

I went to the doctor's office this morning, I signed in and sat to wait for my appointment.  After 45 minutes of waiting, the desk person called me up.  I thought she was just going to ask about my new address or something; nope, she informed me that the endocrinologist doesn't accept my insurance...

This particular office isn't his, he only comes here once a month to help out.  If I want to see him and have my insurance accepted, I have to travel to his private office, in Hanford!  That's like a half hour drive from me and in a direction I rarely go.  I don't have a valid driver license (diabetic retinopathy), I rely on rides from others.  I'm screwed.

So, I didn't get to see the endocrinologist.  I need to search for another in my area and get my primary to send in a referral...and wait god knows how much longer.  I'm sobbing as I type this.  I'm so fed up with insurance and rules and everything working against us diabetics!  Why can't we get help even from those who are supposed to be here to help us?!

As if that wasn't enough to ruin my day, I headed over to the pharmacy to refill my test strips and lancets.  What do you think I ran into when I got there?  My primary, who gave me the prescription for test strips, put on the order to test once...ONCE... a day.  So the pharmacy refused to fill my request because "It's too early".  I test no less than four times a day!  I need my strips...NOW!

So I have to call my doctor's office on Monday and have him correct the order so I can actually do what I need to to stay healthy.

This all makes me want to give up and head on over to the Italian restaurant down the street and fill up on bread, pasta, and calzone!

Of course I may not do that, because no matter how insurance, doctor's, and prescription regulations work, I can still, for the most part, take care of myself!  I just need to cool off, gather my self control, and not give up!

Funny Little Thing.

Whatever, you normal people keeping your insulin in your pancreas. I keep mine in the butter compartment!  I am so awesome that I don't need to make my own insulin!  I can be alive, healthy, and outdo any of you so called "healthy" people any day.  Psh, who needs a working pancreas; not me!

I'm so strong that I can have a disease and still live a normal life.  I'm ALL that!  I was taking my own shots and pricking my own fingers at nine years old.  Nothing hurts me!  Nothing can bring me down.  I am invincible.  I bleed on purpose at least four times a day, and I don't flinch one bit.

I'm so smart that I often know more about diabetes than nurses and doctors! 

I can school you on foods and nutrition!

What? You broke a bone?  Let me tell you how it feels to have heart failure, neuropathy, eye surgery without a nerve block...

So you complain that you had to get a flu shot...I take six shots...EVERY DAY.

I'm so brave, I go everyday playing a roulette game with my blood sugar.  Will it go too low? Will it go too high? Can I keep it normal?  Will I wake up in the morning or will I be in a diabetic coma?  Who knows!

I'm so badass I live off of vegetables!  I'm so awesome I shun junk food and it doesn't phase me.  I'm not one of you pansies who's addicted to carbs.  "Oh, my, I would just die if I couldn't have my doughnut every morning.".  "I just can't imagine never having mashed potatoes ever again."  Ha!  It's so easy for me!

I'm the greatest superhero!  I fight death and destruction everyday!  There is a war going on inside my body and it's up to me and only me to fight it.  If I slack just one tiny bit, the evil bad guy, Diabetes, will get the upper hand and could kill or maim me in the blink of an eye.

I am tireless, I am enduring, I am steadfast.  I have to be because diabetes is chronic, diabetes is forever, diabetes is destructive.  And if I give up, it will be the end of me.

Don't ever think that I am sick.  Don't ever think that I am weak.  Don't ever tell me not to take some time to cry out the frustration and exhaustion from fighting this never ending battle.  Don't ever think I am playing it up.  For every struggle you do know about, there are a million more that I don't show.

I am strong!  I am forever fighting.  I am brave!  I am diabetic.

Nothing Compares to You

It came to my attention a few weeks ago that my retina specialist has left the group I'm a patient of. None of his patients are pleased with this. You see, he is the top rated retina specialist in this area for a reason. He's absolutely brilliant, compassionate, gentle, and personable. All of his patients are in an uproar and trying to figure out what happened and where he is.

Well, today I had an eye appointment. This was to be my first visit with my new retina specialist. I was a bit depressed because I kept thinking about how sad I was to lose such a great doctor.  I was also hoping my new doctor would be a good one; I need a good retina specialist with all my issues.

After waiting an hour and fifteen minutes past my appointment time (which told me they were overbooked) I finally got to meet my doctor. She is kind, seems knowledgeable, and gentle. She mentioned that she was supposed to be on maternity leave but came back to cover the doctor who left (which tells me he left quite suddenly).

As for my exam, nothing has changed much. She did a quick exam which made me a bit upset.  My old doctor, even when running behind and overbooked, always took the time required for a thorough exam.  He never cut corners for the sake of time (or at least he was good about not seeming to). This new doctor, despite rushing, found (or at least confirmed from what she read in my file) all the same issues my old doctor had been dealing with me on. She says I still have some micro hemorrhages in my left eye and will need some more laser treatment in a few months. As for my right eye, the worse one, she says the oil will stay in permanently or else my retina will detach again. Also, I need surgery to remove scar tissue from my lens which will improve my vision.

Not happy about having the oil in my eye permanently, my old doctor said a year...maybe more. This means I'll never be able to see adequately again.

I see her again in April. And I see my cataract surgeon in January to set up surgery to remove the scar tissue from my lens.

All in all, I'm OK with the new doctor, but no one can ever live up to the great Dr. Hunter!