FUT1D

That's right.

Eff You, Type 1 Diabetes.

I'm literally over you.  You've been in my life for 30 years.  My longest relationship.  You have bossed me around. Controlled me.  Made me feel badly.  Made me cry.  Put me in pain.  Made me scared.  Made me sick. Made me feel hopeless.  You have made parts of my body give up.  You have made me stress out and become anxious.  You make me think of you first. You have made me depressed.  You have made me suicidal.   You have made me not give a shit about my life. You have hurt my friends, my family, my partners and random strangers.  You have been a selfish prick.  Literally.

I wish we could break up.

I am a middle aged woman, who is currently peri-menopausal, and has just received that dreaded post-bloodwork call from her Dr. My A1C raised to 7.7.  UGH!  Seriously????  I am doing NOTHING different.  NOTHING!!  I am eating that same.  In fact, I've been on the same damn diet for 30 years.  I have been wearing the same pump, counting carbs, watching treats, exercising more, taking my meds, checking my blood sugar....doing everything humanly possible for you, Diabetes.  Everything.

So, why do I have to suffer?

Why do I have to feel guilty and angry and sad, and etc etc and so on and so on because my A1C sucks?!?!

It's not fair.

Oh, and then my Thyroid is jacked up again?  Too low?  3 months ago it was just fine.  The meds were perfect.  Now they aren't?  Now I need a higher dose?  Because of my hormones again?  Because of my Diabetes again? WHAT?!

I'm so frustrated and sick of this effed up relationship.  I can't even take a break!  Go on a vacation, alone!  Get 5 minutes without the D bullshit invading my life.

The worst thing is that 'normal' people, 'non-Diabetic' people don't get it.  It's not only what I eat.  I know the lot of you are under that misconception and I cannot BEGIN to tell you how wrong you are.

It's what I do, how I feel, if I'm stressed, if I'm happy, if I'm emotional, if I'm over worked, if I'm tired, if I'm sick, if I'm busy, if I have sex, if I don't have sex, if the planets are aligned, if the stars are out, if it's raining on the West Coast and sunny on the East Coast.  It's every stupid thing that a person experiences or does in life.  Every single thing effects my Diabetes and my blood sugar.  I can't breathe without wondering if I b reathe too deeply will my freaking sugar drop!

Again.  Bullshit.

I'm over it.  I, and the other 1.2 million Americans who have T1D try so hard, every moment of every damn day, to get this relationship under some sort of control so that we can just live.  It doesn't matter that there isn't a cure.  It doesn't matter that our lifespan decreases by 13 years right out the gate.  It doesn't matter that we have more medical supplies in our homes/purses/cars/desks than we do anything else.  It doesn't matter that we spend billions on caring for this disease.  None of that matters because we have no choice.

Then let's talk about how much money I've raised for this disease?  For the hope of a cure. How much I have given over to JDRF.  Has anyone at JDRF helped me?  No.  Has anyone paid my hospital bills, ambulance bills, doctor bills, specialist bills, pharmacy bills, medical supplies bills, dental bills, food bills, insurance bills?  No.  Yet, I'm always asked to raise more money.

So, not only is my relationship partner a dick, so is it's family.

This is my life.

This is my relationship.

Until death do us part.

FUT1D.  I freaking hate you.

*Peace.

My Vessel is Sinking.

I went to see my Dr. on Monday to go over some blood work that I had done.  I've been feeling like dogshit lately. Exhausted, sad and I gained 25 pounds.  I knew I was either depressed or it was my damn thyroid acting up again.

Sure enough.  It was a little of both.

I was diagnosed with Hashimoto's a couple of years ago and have been trying to get it controlled since then.  With no luck.  Apparently, I am one of the 5% who have a hard time finding the proper dosage and gaining some control over my thyroid. 

Just like I'm one of the rare that has Type 1 Diabetes.  I swear...why doesn't this rarity thing happen with Lotto? 

Anyway, it's a bunch of crap.  I was riding to work with Abe the other day and started thinking about my health.  Here is the verbal diarrhea that ensued.

Diabetes can't be the reason my body is attacking itself.  It's my immune system that's effed....not my Diabetes.  I have T1D because of my immune system.  My immune system, which shall henceforth be called Asshat, decided to attack and kill my pancreas.  That caused me to have Type ONE Diabetes.  My immune system is attacking my thyroid.  This is causing me to have Hashimoto's.  The immune system is supposed to attack disease....not cause it.

So, Diabetes will obviously be the death of me. Of this I have no doubt.  It will cause many problems because that is the side effect of having Diabetes.  But, if I had a pancreas transplant...put a brand new, living, perfect pancreas in my vessel...it's only a matter of time before Asshat attacks it and I end up right back where I was.

This leads me to think that I don't necessarily need to find a cure for Diabetes, per se.  I should be looking for a cure for Asshat.  That would solve all of my health issues.  To teach Asshat that it's one main goal in life, it's one job in this vessel, is to attack the BAD stuff!  NOT the good stuff!  Asshat is obviously blonde.  But, how can Asshat be so stupid???  I'm not, so who taught Asshat to be backwards?

This is why when I catch a cold, or a virus or whatever, I get it 10x worse than the normal person. I am sick for weeks when a person whose immune system isn't an Asshat is only sick for a couple of days.  Or when I cut myself, I take weeks to heal when a nomal person only takes a few days.

Asshat is the problem.

Not Hasimoto.  Not Diabetes.  Just Asshat.

Does this make sense to anyone other than me?  Or has any other person thought about their immune system and whether or not it's an Asshat?  I'm curious. Please leave comments on this topic.

*Peace.

Hello, November.

Hello.  It’s been a while so I thought I’d pop in a drop a blog. That sounds like I’m going to do something awesome with some killer dance moves or something but no.  I’m just here to purge the Diabetes side of brain.  Haha! 

I don’t have any excuses for not blogging other than being lazy, or busy, or lacking in concept so I apologize to those who care.  But, like I said, I’m back in the saddle again and ready to spit out some Diabetic prowess in honor of November being American Diabetes Month.  

It’s awesome we get an entire month for a disease that we maintain every millisecond of every day for the rest of our chronic diseased life.  It’s awesome that we get a World Day, too. This day is to spread global awareness worldwide like Diabetes is spreading worldwide. So, wear blue and be aware of Diabetes and your pals that have it. We appreciate it.  We do.

It’s pretty effed up though that they chose November…the Thanksgiving binging month…to be Diabetes month.  Sigh.  Ok.  I’m using a pump so whatever…I eat what I want!!  (in moderation) haha.

Because it’s our month, I did a little Googling on Type 1 Diabetes.  One thing I came across was this list of facts.  Some of them actually surprised me.  I’ve had Diabetes for 30 years and am rarely surprised by anything so that says something. Go ahead and give it a read.  Or at least give it a scan. 

Warning….it’s not good or light or positive for all those D pals you were aware of earlier.

http://facts.randomhistory.com/facts-about-diabetes.html

I’m not gonna lie, I’m a little depressed after reading some of these. It seems to be that, while my life could be worse, it’s not going to be any better with Diabetes.  I have nothing to look forward to.  At this point, even looking forward to a cure seems hopeless at times.  However, I’ll never lose hope.  Without hope, I have nothing.

One thing this list failed to mention is gum disease.  Gum Disease is another side effect of Diabetes. I’m proof of that and am currently dealing with the heartbreak of losing my teeth to periodontal disease.  I’ve bitched about this before on my blog so it’s not new.  It’s just becoming worse, which I knew it would. 

Another thing is thyroid disease.  This I am also dealing with. Hashimoto’s Disease.  Hai!  Sounds like a great roll I’d order at my favorite sushi place but nope.  Not that lucky.  This is the reason for my weight gain, fatigue, sensitivity to cold and the pain in my joints.  Ugh.  I guess I’m pretty fortunate because after 30 years, I could be worse.  I wasn’t always a ‘good’ Diabetic and am still not perfect.  I abused my body with drugs, alcohol, resentment, rejection, sugary foods and you name it.  If my teeth and my thyroid are my only problems, I’d say I’m ok.  I’ll be a tired, toothless fatty any day over a being blind, one legged dialysis patient.  Just saying.

Hey, you always gotta look for the positive. Haha

In other news, Diabetes has been cured in mice.  Now…how do I become a mouse?

For more info on November being about Diabetes and not facial hair,  click these links:

http://www.diabetes.org/in-my-community/american-diabetes-month.html

http://www.idf.org/worlddiabetesday/about

 *Peace.

 

Awareness vs Knowing

November is Diabetes Awareness month. 

Its awesome that Diabetes gets a whole month. An entire month to tell everyone the statistics, the side effects, the prevention tools for type 2, and so on and so forth. It's great. No, seriously, it is great. People at risk for type 2 need this awareness. If I could have done anything to prevent the onset of Diabetes I certainly would have. If I could trade places with a Type 2 Diabetic, I certainly would. 

But, I cannot. I am a Type 1 Diabetic. A Juvenile Diabetic. The one with no prevention, no cure...I am the 5%. Que sera sera.

I was thinking about my life while walking Jack this morning. I love our walks because I can reflect on my life, see the beauty everywhere in the woods, make a dog ecstatic, just breathe and I'm getting exercise. Perfection. Today I was thinking about how I've had a pretty amazing life. Lately I haven't been feeling this way. I'm heart breakingly single, 45, living with my mother, extremely broke, working at a job that I don't love and I have a chronic disease.  Wow. Needless to say, I've been feeling a little sorry for myself.

But, today's walk had me thinking otherwise.  Yes, having a chronic disease sucks ass. I'm not gonna lie. It's a huge part of who I am and my life....but....it's not all of who I am or all of my life.  There's so much more. I love life and I live life..every day...because I know how fleeting, short and uncertain life is. I truly know. I just don't have the idea like many people do, I have the proof. I have almost died on many occasions. So, I grasp any opportunity to live, laugh and love. Because, in the end that is all that matters. It doesn't matter how much money you have, how many cars you have, how many toys you die with. What matters is that you really lived. With a chronic disease or not.

Diabetes..the thing that will ultimately kill me....has taught me to live.  

I have been to several countries, hundreds of cities and thousands of towns. I have jumped from an airplane over the Mohave desert, I have surfed in Oahu, I have hiked to the top of Mt. Vesuvius. I have had espresso in Italy, escargot in France, haggis in Scotland and a Guinness in Ireland. I have made 70k a year and 22k a year. I have owned a house and rented a house. I have laughed more than I have cried. I have had love and heartbreak. I have gained and lost. I have had everything and nothing. I have a beautiful family. I have amazing friends. I have lived. Thanks, Diabetes. Because one day, I know it's very possible, that I may not wake up to seize the day.

For example, I have had a blood sugar level of 7, I have caused a 6 car pile up, I have fallen on a glass table, was covered in blood and dragged myself out the garage door where I scared all the neighborhood kids, I have punched a cop, pushed my daughter, woken up to a bedroom full of paramedics with tubes everywhere imaginable, I have had episodes in the middle of roads, theme parks, stores, zoos, parks, malls, restaurants, dates...yea.  Like I said, I know how fleeting, short and uncertain life is.

Being a Diabetic is difficult. We look 'normal'.  People who aren't Diabetics don't understand...not Dr's, not nurses, not family members, not friends. If you aren't a Diabetic, you will never grasp the full effect of being a Diabetic. No matter how hard you try. No matter how many times you attempt to explain that you are trying to control an uncontrollable disease, it never really hits home to the non-Diabetic. 

And that's ok. Kudos to them for not having to know. I'm jealous.

I like to think of it like my body is at war. Outside, I look fine. Inside, my body is waging war, 24/7, against itself. There will never be a victor, only a loser.  

Me. 

Like in any war, there are many casualties. My body is the main one. It is constantly fighting against itself and there have been some losses. My body has injured my thyroid, my gums, my eyesight, my memory and my fingertips. (I have little to no feeling in my tips and they are covered in holes due to testing.) My body has war wounds. Scars and bruises.  My weight is chaotic. My bones are getting tired.  In fact, my entire self is getting tired.  Hell, if you were at war with yourself for 28 years, day and night, you'd be tired, too.

In fact, I'm exhausted. Being tired effects my blood sugar. Stress, exercise, sex, if I'm sick, upset, emotional, worried, busy, food, drink....life in general effects my blood sugar. Add on to this the future of my body, what could happen, what may happen, what will happen. Add on, again, the upkeep, cost, supplies, testing, shooting up, putting pumps on, taking them off, watching your weight, what you eat, what you drink,  how you feel, how you don't feel, exercise, looking at carbs on every label, resting when you want to play, Dr. Appointments; General, Endocrinologist, Opthamologist, Podiatrist, Laboratory visits, pharmacys...my God! It's never ending. I have suffered, my family, my friends, my co-workers, anyone who is part of my life becomes part of this disease along with me.

All of this makes me live life a little differently, of course, but it makes me think about life a little differently, too. The only sure thing in life is death for all. For this Diabetic, this woman who has had a chronic disease for more than half of her life, this woman who doesn't remember how it feels to NOT be sick, this woman chooses to live life on her own terms. To the fullest. Without wasting or turning down any opportunity to do, learn, feel, taste, experience something new. Anything new.  Because, even though Diabetes is the 7th leading cause of death, I am going to be sure to live extremely and continue fighting before it causes me to die. 

True story. 

*Peace. 

I Got 99 Problems & They Are All Diabetes.

That moment that reality hits....I have Diabetes....and my whole day..my whole life...is ruined.

Not being able to go anywhere without a bag.

I'm afraid to live alone....or be alone. I love being alone sometimes. I'm an only child FFS.

When people say 'Diabeetus'. Grrr.

Reusing needles or lancets even though it hurts because I'm too lazy to change them.

Having to take 10 units and your FlexPen only has 8 left. 

Having to use a FlexPen because you have no insurance and Pods are $800.

Having no insurance and finding out a bottle of life sustaining insulin is $168. 

Putting a new pump on and either accidentally ripping it off or realizing the cannula is not in anymore.

When people ask if it hurts. Of course it hurts! Every moment of every day!

When I'm in a bad mood and the uneducated and annoying ask if my sugar is high. 

Diabetic Food Police.

When people say Equal or Splenda is going to give me cancer. Ummm. Thanks. That's all I can have.

When a Non-Diabetic thinks they know more about Diabetes than I do. 

Only needing a Doctor for scripts or blood work because I actually know more about Diabetes than most Doctors. 

When people don't understand that my sugar is low.

When people try to argue or reason with me when my sugar is low.

When people take whatever I say or do personally when my sugar is low. 

When my pump or CGM alarm goes off in embarrassing places. Ie: library

Finding used test strips EVERYWHERE.

Being felt up, violated and interrogated every time I fly. 

When people tell awesome stories about their grandmothers fathers uncles mother who lost a foot and went blind due to Diabetes.

Becoming a mosquito lollipop every time I walk outdoors. 

Looking like an abused woman or a klutz due to having bruises everywhere because of pumps, needles or lancets. 

Having more problems occur due to Diabetes...like simply having Diabetes isn't enough. Ie: Hashimoto's Disease.

Feeling guilty at my Doctor appointment because my A1C is higher than last time.

When the uneducated regale me with cures for my disease.

When a complete stranger looks at or touches my pod and says loudly 'What is THAT?!'

When I say I have to eat and no one reacts or hurries. Um...have to eat NOW. Mayday! Mayday!

Having low blood sugar and shoving every possible food item in your mouth.

HAVING to eat..not ENJOYING eating. 

People who think Diabetes is only Type 2.

Talking about my real fear of death because, realistically, it could happen to me at any moment. Then having someone say 'Everybody dies.'

Mood swings because my blood sugar goes from 50 to 300 in a moment not because I'm actually moody.

When my blood sugar drops and I feel like I am dying.

Blood sugar rising or dropping for no apparent reason. Like dropping right after dinner or going to bed at 80 and waking up at 200 without eating a thing.

Being told 'A healthy Diabetic is a chubby Diabetic.' by my Endo. I don't want to be chubby!!

Checking my blood when my fingers are cold.

Wearing my bathing suit while wearing my pod.

Depression.

Thinking that all Diabetics are the same. 

Wondering if the Starbucks teen really gave me a 'Skinny' Vanilla Latte.

Having my purse be 99% full of Diabetes stuff...leaving little room for my wallet and Chapstick. 

Waiting for my teeth to fall out thanks to Diabetes and not poor dental hygiene. 

Hoping to be able to feel it when the Endo pricks my toes and feet.

Wondering what my pancreas looks like and wtf it's doing in there. 

Getting jealous of Non-Diabetics. Getting pissed at Non-Diabetics who abuse their healthy bodies.

Feeling guilty that I started this genetic nightmare and hoping there will be a cure before my grandchildren are born.

Equally loving and hating 'Steel Magnolias'.

Not being able to figure out where to put my pod because every fatty part of my body has been used.

The needles being so freaking huge it looks like I'm about to sew leather. Ie: Dexcom

Not being able to take a Diabetes vacation....ever. 

The way my Diabetes effects my family and friends.

When my sugar drops when I'm driving resulting in a 6 car pile up, a totaled Nissan Pathfinder and a cop bullying me in the hospital about taking my license away.

Having always said I wanted to die in Ireland and then almost doing it.

Looking like an insane person when my sugar is low.

People staring.

Non-Diabetics never really understanding or getting it.

Arguing with my boyfriend when my sugar is low.

Having Diabetes as my number 1 thought.

Feeling so tired at night because my body has been fighting to stay alive all day.

Worrying that my body is starting to break down because I've had this disease for 28 years.

Saying that I've had this disease for 28 years. Sigh.

My eyesight is getting worse and worrying that I may lose it.

Having medical supplies in my fridge, kitchen, bedroom, bathroom, car, purse.....

Not wearing a Medical ID bracelet because they are ugly or gay.

Explaining to a new friend or boss or co-worker that I am a Diabetic.

Wondering what it would be like to not have Diabetes. Or if I was cured. Would I ever be or feel 'normal'.

Wondering if I will ever be given the chance to know the answer or that.

Knowing that if I let my sugar remain high for a while, I could lose weight. Weighing the options and seeing if it would be worth it.

Questioning the universe as to why this happened to me. 

Eating because you have to, not because you want to or because you are hungry.

Actually hating food and hating to eat.

Having to start eating after everyone else because I have to test, bolus or shoot up and then begin.

Being stressed because of Diabetes and having that stress effect my blood sugar.

Not being able to sleep fully or soundly for a entire night.

Trying to diet and work out only having to eat more because of low blood sugars.

Not being able to smoke weed because I can't tell how my body is feeling or my Diabetes is doing.

Having my memory effected because of Diabetes. 

Being harassed about having tattoos and being a Diabetic. 

Catching colds easier and having them last longer than a Non-Diabetic.

Taking longer to heal.

Not being able to walk barefoot because I might cut my foot on something.

Knowing that insulin makes me gain weight but not being able to stop taking it and just staying a fatty.

Having a pod tan line. 

Telling people I can have sugar, can eat whatever I want and only worry about the CARB content. Sheesh.

Never being able to commit a crime because I have polka dot finger prints. 

Becoming combative and punching firefighters and cops when my sugar is low. Or threatening to kill people.

Having to use duct tape on my pod because it was falling off and I didn't have anything else. 

Having bulges in my clothing because of my pod.

Smashing my pod on a doorframe as I walk by and having the entire thing rip off my skin. 

Having to wear so many medical devices that I feel like a freaking cyborg.

Ignoring my pod and CGM so long that  they start vibrating and screeching in anger.

When I go to the bathroom, forget where my pod is and pulling down my underwear rips the damn thing off.

When everyone says to refrigerate my insulin but I know what cold insulin feels like pulsating through my skin.

The fact that I need to go to the Doctor to get a script refill. Hello? I'll have Diabetes for life! Can't I just have a never ending supply of the shit that keeps me alive, please? 

The SMELL of insulin.

The fact that I am sick. I have a chronic disease. One that will destroy my body, hurt my family, worry my friends, cost me millions and will eventually be the cause of my death. :(

I think that's 99. Psh. 

Dedicated To The Ones I Love.

Today I read a few comments that were posted from an old entry of mine...Cult of Personality
Sometimes, when I write, it's basically like mind diarrhea.  Everything cultivates in my head and when I sit down to write, it all comes spewing forth.  Because of this, I rarely take the time to read what I have written or think about what I have written because I've released it.  This probably doesn't make sense to any one who isn't a writer.  Our brains are mysterious.

After reading the comments, having my eyes fill with tears and reading my post with more clarity, I realized that I have neglected to take notice, show gratitude and give thanks to those who are in my life.  I have been a T1D for 27 years.  There have been a lot of people I owe these things and more to. A lot.

Loving a T1D isn't an easy task.  It is a rocky, windy, bumpy, icy, slippery when wet, long ass road.  It is a road that many people weren't given the option of traveling down...but they found themselves in the drivers seat.  It is a road that many people do choose to travel down....and sometimes they probably regret getting in that car....but they do get in. Everyone behind that drivers seat is taken for one hell of a ride.

In no particular order, I owe the following thanks, gratitude, acknowledgement and gratefulness.

Amanda, Fran, Abe, Jenna, my dad, Jeannie, Dickie, Aunt Donna, Heidi, Laurie, Shesh, Ted, Tami, Elisa, Steph, Laura, Jill, Tom, Andrea, Nancy, Gary, Erik, Eileen, Bill,  a handful of ex's, especially the ex who broke up with me after an episode where I couldn't walk, the waitresses and waiters at many restaurants, the guy in the middle of the road, the people at the Ulster County Fair, the people in public restrooms, the people in line for the Pirates of the Caribbean ride at Disney, the people watching Fantasia at Disney, the cop I punched, the paramedic I asked if he was gay, the thousand other cops and paramedics who have 'met' me, the homeless person whose ass I wanted to kick, the neighbor kid who saw me crawling out from under my garage door covered in blood, my neighbors, my co-workers, the convenience store workers, the grocery store workers, the people in the 6 car pile up, the employees at the Ireland hotel....

My gawd.  27 years of being a Diabetic makes for a lot of people helping me to stay alive.  I can't remember them all.  There's simply too many.  So, as a whole and in it's entirety, thank you to anyone who has dealt with me during my lows and my highs.  Who forced me to eat when I refused.  Who took hits, slaps, pushes, punches, tears, threats, screams, insults and verbal abuse.  Who held me up, helped me walk, who wiped my tears, vomit and spit, who hugged me when I didn't deserve it, who talked me through and kept me from falling.  For allowing me to vent, cry, weep at the unfairness.  To be scared, angry and upset at my future.  To not really understanding but trying very hard to.

To everyone, for everything, over the years.  Thank you. For all the things I remember and all the things I've forgotten, thank you. I would not be here without you and that is the truth.

*Peace.

Endo Schmendo

I finally made an appointment with an Endocrinologist.  The day before Thanksgiving.  I guess the timing couldn't be any more perfect since I plan on eating my weight in holiday food on Thanksgiving. It's probably better that I see a Dr. the day before.  Oy.

I am trying to remain positive about meeting this new Dr.  The fact is...I have been a T1 for 27 years now.  In that time, I have found 1 Endo that I adore.  Just 1.  That was only a couple of years ago in Vegas.  Dr. Berelowitz.  Because I liked him so much, I had the best control, the best A1C, the best bloodwork, the best D a person could have.

Moving was almost like a break up for me.  I wanted him to come with but he had to stay.  Sigh.  Now..I have only been seeing a General Practioner for 2 years since moving to NY.  I really like him but he isn't that confident in my care of the D.  I respect that.  He has wanted me to see an  Endo but I keep blowing him off.  Too busy.  No money. I  know how to care for myself better than any Dr.  Blah Blah. Just basically comforting myself in the security that my GP quotes 'The Princess Bride', knows me and my life, treats me like a human being.

But.  I finally broke down.  I am not a fan of Dr's and having had a chronic disease for over half my life has caused me to be a little leary of many.  I have had the Dr's who act like they blame me for getting this disease.  I have had Dr's who tell me I could control this disease better if I really wanted to.  I have had Dr's rush in and out without getting to know me or my life.  I have had Dr's run a rampant of unnecessary tests, etc, for the money and not for my health. I have had them all.  So, it's very difficult for me to find a Dr. that isn't judgemental, that takes the time and listens to me personally, that is as interested in caring for me as I am and not just seeing dollar signs and no hope. 

Type 1 Diabetics need a Dr. with hope.  Plain and simple.  At times we get so down living with this pain in the everywhere all day, every day, that our hope falters at times.  Mine does.  It's nice to walk into an office and feel like that hope.  Doc B had hope.  He was the best.

I have hope, too.  Hope that this Endo will, at the very least, be 1/10 of what Doc B was.  This would be a good thing for me and my body.  :)

*Peace.