Different

Different is the word of the year. It has covered the good, bad and ugly. It has covered the Great. The exciting. The adventures. The falls. The hardships. Different has kept the sailor in me from coming out; sometimes. Different has made it easy to describe what I’m feeling when I’m so unsure. It’s one word that can describe every aspect of my life right now. Every Single Aspect.

I’ve a feeling it will come with me in 2012. I don’t know any other word that can do what different does. Most days I’m okay with different. And truly, my life Is very different. A Lot has happened in one year. At times it seems too much; my body will tell you that. At times it seems to not be enough; that’s my annoying mind wanting to do more. The two fight. I usually ignore their banter. Otherwise it’s all that I hear.

Different.

Different area.
Different home.
Different culture.
Different people.
Different job.
Different schedule.
Different food.
Different exercise.

Different is no longer looking like different should, let alone sound like it.

Different doctors.
Different approaches.
Different concerns.
Different technology.
Different data.
Different support.
Different answers.
Different unknowns.

My life is different. What I do is different. What I think is different. What I feel is still a mess. But the majority of the different is good. It just has not fully outweighed the bad. There may be more good but the bad sticks, like glue. And when you try to remove that glue, it gets everywhere. It lingers, even after you scrub really hard. You know the glue was there. It’s hard to forget.

What I have not forgotten is the different has moved me forward. Onward I go. Whether I want to, need to, have to…. I move onward. If my movement is forward I know I’ll be ok.

Side note: I Love the OmniPod. I’m still adjusting but I Love the freedom. Love. The DexCom has been awesome. I love the trends it offers. A bit more insight into what I do wrong can be good, if I don’t dwell; see it, deal with it, learn from it, move on. There was no miracle of a couple weeks and POOF my blood glucose levels are decent. I’m learning all over again in a way. I’ve learned a lot. Add in stress of the Holidays (I don’t travel well and the food is too good to Not eat) and DexCom might beat out roller coaster designers. One day at a time.

Side note two: My Mom thought she told me her younger brother was Type 2. She said in the past year. YEAR. And I did not know! I saw him before I moved. This upset me a bit. I knew of his other health issues but Not this. I Did know her older sister is in pre-diabetes stage. Encouraging her to do right by her body right now is tough. She’s close to 70.
And worst of all, I found out yesterday that a very, very dear friend of my Dad and step-mom’s passed away on Christmas. She was Type 1, forgot for how long. I remember when she got her mini-med, it was the start of me thinking about a pump. She was only 61. She recently got a puppy. Dad said she was So full of life last week. We speculate a low only because she’s had issues in the past.

I Hate Diabetes. A Lot. It hurts. It’s painful. Mentally and physically it takes a toll like you cannot imagine. It’s different for every single person, at all times. Some bodies can handle certain aspects of Diabetes management. Some minds can too. I know for me it’s hard. It’s a struggle. Not every day but most days. I’m human. I’m me. I have the DNA I do. Some things work, some don’t. It’s a trial and error life. It’s frustrating and angering. And every diagnosis I hear about cuts another hole in my heart. My anger then turns into energy. That energy is spent advocating. It’s spent praying. It’s spent caring and loving and supporting. It can be very tiresome but I know it’s worth it. It’s what I do. What I want to do. That’s how I keep going when I feel like I can’t.

Happy Happy New Year to all! Here’s to a Different Year. (see what I did there?)

Point

My A1c went up. Missed the call from my Endo on my cell, volume low during work, so I only saw it about an hour ago. And now my mind is a whirl of darkness. This is it. I can’t manage my damn condition anymore. What’s the point. 26 years and this is the worst yet. I make all these changes then WHAM my body turns on me.

I don’t know what to think or do. DexCom will be here tomorrow, hooray! OmniPod – working on it. Moving soon, less stress! And I have no feelings attached to any of this. The exclamation points feel fake. I feel numb. Lost. Oh so frickin’ Lost.

Why? Why now? Why this issue or that? Why do I want to eat all the effin’ time? Why can’t the insulin work as well? Is it the insulin? Me? My lack of real estate? Do I even care anymore? Do I???

Some like to think they have the answer. I get it. You want it fixed. You’ve no idea how much more I Want that. Some are not nice about it. Some think this, try that, go here, fall down, deal with it, sorry about that….. my reaction? Fuck This Shit.

But I know I won’t. I know I won’t give up. But I do, sincerely, feel like this is a very slow death. These highs are Awful. Just plain horrible. Horrific at times, really. And I have NO handle on them anymore. No symptoms make for an exhausting life. Yet people want to blame me for it. And it hurts. It Really Fucking Hurts when you react that way, tell me the things you do in the manner you do. Please. Stop. Just listen….. Please, Listen.

But who wants to? I don’t make Any sense, nor does my body. I’m the opposite of what people learn. Those that just read, yeah, you don’t count. I’m talking the medical field, friends and family. We can discuss this, but DO NOT TELL ME WHAT TO DO. You, Thank God, don’t have it. Remember that.

Yes, I’m ranting. I really am lost. I feel so damn alone. So so so so frickin’ alone. There’s no one to hug me. Yes, it’s a tantrum now, a “it’s NOT FAIR!” moment or one hundred thousand of them. No one to hold my hand. No one to put an arm around me, tell me to let it out, to cry, it’s ok to cry. It’s ok to be down. It’s ok to be angry. It’s ok to feel the way I do. It sucks the depression will kick in but the light is there and Together…. there is no Together in my life right now. And I Truly don’t ever see it happening.

I need to get this out. It doesn’t mesh, meld or make sense. I don’t care. Because truly, at this moment, I can Not care. If I do, I will go down. I can’t go down. Obviously, that bitch A1c went up in two months. Who goes Up in two months?

I feel like a total failure. Like I’m not good enough, never was. Oh shit. Now I’m crying. This is a lovely thing to do to one’s self. Yup. Knock ‘er down good, Crystal. There you go, a couple more Big blows and that’s it. The ground.

If I go there… I don’t know if I’ll get up. Things were SO good in August. Then September this damn urinary tract infection shit on my world. Everything started falling apart. No Doctor wanted to listen to MY history, my Current situation, where I was, where I am, where I want to be. Just accusations, fear mongering with complications and just plain shit. It’s shit. All of it. I am, Diabetes is. My nazi Doctors are. My life is shit. It feels like shit because I feel like shit.

Shit.

I HATE YOU DIABETES. H A T E. HATE!!!!!! I don’t want you anymore. I so flippin’ hate you.

Tell Me I’m Ok

All the while I’ll tell Diabetes off, in more ways than you can imagine. Add to that list my new Endo. I’ve seen him four times since October. We’ve been working together….I think. Today his delivery on some news was less than desirable. I left feeling guilty. I felt awful about myself, my life. I was so upset. So of course I dropped 200 points in less than 2 hours, to a nice lovely effin’ 102, just like they like it. But no, stress and emotions don’t mess up your blood sugars, no way, no how. I’m supposed to be a rock, concrete slab, robot psycho with No feelings and eat… drink only water for the rest of the life God grants me. Mmm hmmm, yup. I was no longer human at the age of 6 when my body turned on me. Nope. Alien. From Pluto (dark and cold, right?). Yep.

The end of July, this year, I moved, started working full time and eating more consistently & better. My bg’s were AWEsomesauce. Then something happened, we are not sure why/how (hindsight, the bitch, I can guarantee why and it Has to change!) – I got an infection (UTI — Ladies, NO symptoms!!) – how long I had the infection? Months, at least. So that explained some highs and the horrific, I cannot believe I’m sharing this but I HAVE to for my sanity this evening – I hit 10. Yes, TEN. My A1c was shit. I was shit. It all went to shit.

Then I had an escalator incident; heavy suitcase down a flight….or two. Escalator was broken, folks. Ouch. I was sore for a week but things were fine. Bg’s still wonky so I asked for another urine test; negative. So what could I blame it on? Bad sites? Real estate crapping out on me? My love for chips because I can Chew because I have Teeth? (Our minds are this playground we didn’t know we should probably not step foot there, whoops.)

So yeah, I like chips. Sue me. I eat salad whenever I can get it. Add in the kitchen remodel where I live, no fridge. I can make excuses. Sure. I Know for a damn Fact that my emotions affect my blood sugars but I WILL NEVER CHANGE. I found myself not long ago, I canNot lose me again.

The escalator incident was disguising something I was fearing. I started to get scared; bad bg’s and edema (type of swelling). I was nervous, on edge and so very lost, frustrated & confused.

I’ve  been doing this for twenty six effin’ years. I know a lot. Now, I know nothing because all of a sudden the progression that is this damn disease reared it’s ugly head at a time in my life when things for the Better were to be happening. Maybe that’s it, they are better so I can handle the awful? Great. Thanks. God doesn’t give us more than we can handle… dude, Love Ya but seriously.

I also know I’m rambling because I don’t know what else to do.

So; moved, things great, infection, high bg’s, love of chips, I breathe air like everyone, A1c in the crapper at 10 and a new Endo. Then compression socks and a diuretic for the edema.

One Key component to all this madness…. hyperglycemic unawareness. Hyper, as in high. 99% of the time I have NO symptoms. Nothing. Nada. Gone. Done.

Ok, right, now I have all the components. All I know is I was trying, trying oh so damn hard to keep it together. Other things ensued and I had some pretty awful days, just plain Awful. Days that you can’t explain to anyone, not even another Diabetic. But I fought and I keep fighting because I Wanted to just Give Up, throw in the towel and tell the world I was Done & Diabetes could take me.

I’m still there. Thought about it this morning actually, no, late, yea, early this am. Lived a good life, loved my cat/dog, nieces/nephews/family. Saw places, did things, met people….

I went to work and tried to keep the dark thoughts at bay. I know this is long and I have not gotten to the point yet, sorry but I ramble when I’m a mess. I attended a health fair today and was able to speak with people who have Diabetes or know someone. I handed out information, alert necklaces and just listened. It was a Great day.

Then I went to my Endo. The nurse told me he sent in (no he didn’t, the other nurse did…) the paperwork for the OmniPod, he asked if I had it yet. I laughed, didn’t know you did it, I know I called a week ago but that was about the CGM because, HELLOOOOO, NOT feeling my highs! I think a megaphone and a neon sign, yes, both, will make an appearance next appointment.

Then he pointed, repeatedly, at my blood sugars and said this is your diet. I cannot tell you enough, in any other way, this is your diet. I brought up the infection, stress, hormones, period, emotions etc etc etc etc etc…..to no avail. Diet. He said one day it’s good then it isn’t. I just stared at him. I didn’t know what to say really except, well, yea. You say diet, I say fist in your face. Yea, I was angry. No one has Ever said to me, Hey You, YOU SUCK AT EATING. Ha. I’m great at it actually because I Love food, not gonna stop either.

Let’s go back….just briefly – almost FIVE years without health insurance, barely making rent and fresh food was out of the question, consistently. Yet I was in the 7s then. So……I blame hyperglycemic unawareness. Yes, I do. All the way. It’s the underlying issue. And I’m sticking to that story, mkay? Things changed Dramatically for me in July. A lot changed, all at once. And I’m supposed to be “in range” after 26 years? Bahahahaha! Seriously, these medical schools, what I wouldn’t give to go OFF on these instructors. You all treat us like it’s easy, there’s a formula. Yo, if there was…. there would be a frickin’ cure. But Diabetes entails hundreds of variables, all day, every day. We are individuals with very different make ups. We don’t all react the same to the food we intake, the stress, environment etc etc.

I went on a tangent again, huh? Sorry.

Ok, so even though I am aware of the hyperglycemic unawareness, I guess I never categorized it as a complication. I just felt it made sense after all these years, I’ve had symptoms change before. It’s like your body saying this antibiotic isn’t effective anymore. So you try something else. With symptoms, you test like crazy to figure out what changed. About every 5 years for me. So this was within schedule.

My Endo says I have it because I’ve been going for many years up and down, not consistent. Dude, 1) You’ve seen me 4 times in less than two months. 2) Your delivery was harsh. 3) Your nurse said you were in a great mood. 4) I begged you to be on my side last visit, to help me, to support me. I admitted I could not do this alone. That was HUGE for me. And in an instant you made me feel awful, like I was to blame, it’s all my fault. Oh the guilt. It Hurt. Physically. Yes, we ourselves manage our condition but the variables that eff with us….. it’s not all us, our bodies do what they do without asking, repeatedly. We could do the same thing every single day and get different results. Is this not taught in medical school?

Then I told him the edema was back, the diuretic made me feel like shit and what now. Then in the most passive, quiet way, he said the dreaded N word. Neuropathy. I stared. Ok. I always thought that was associated with tingling (see, I do Not know everything!). He said it has to do with the nerves becoming dull after all the years with ups and downs (bgs). The fluid there (the edema) cannot move out/on correctly anymore. So, compression socks, both legs. For how long? He laughed. Oh that stung. I said well, do I try this and see, what are my options, where could this go? He said you need to wear the socks for life. This is it. It happened, no going back. A complication. Part of living with Diabetes.

I tuned out after the word life. I felt dizzy. I felt lost. I wanted to say more. I wanted to cry. I wanted to beg. So I begged for him to fill out the CGM paperwork  because, Again, Not feeling my highs but ok, all my fucking fault. Thanks, Doc. Fuck you too.

Yes, I am mad. At him. I opened up to him. I let him in the darkest place I live in; I asked for help. And I get this bullshit?

So hyperglycemic unawareness and neuropathy. Oh and an A1c of 10. All in the span of about four months. FOUR.

Yea, I feel like shit. I’m scared. I’m sad. I’m upset. I REALLY miss my parents.

For now I will hide. I got it out. 1554 words? WHAT!? I am insane. In the membrane.
I need more time to process all of this. And thanks for listening, err, reading.

World Diabetes Day Postcard Exchange!

I got mine! Did you? Thanks JS, nice to informally meet you! From the East to the West, we wear blue, bolus and test – we have Type 1 Diabetes but most importantly, we’re the Best! Ha

Happy World Diabetes Day!

For the past few days I’ve told everyone I know (not a whole lot down here) that today is World Diabetes Day, WEAR BLUE. I did my best. It is what it is. I’m wearing blue, my pump is blue too but hidden under my dress. Either way….. I look forward to the world lighting up blue for Diabetes today. Have a blessed day and let the world know we exist!