Don’t Be Afraid To Give Up The Good And Go For The Great

I have a new Dr. He’s nice. He’s good. But something got me simmering then thinking. He asked me “what was your last A1C?” Deadly glare. (Hey I worked really hard to bring it down a point and a half in the last 3 months! That wasn’t easy! I was proud! He wasn’t.) I thought that A1C was good. But it wasn’t great.

I think with the all the hypos and then the dangerously low hypos especially in my sleep, I developed PTSD towards it. It’s scary. So on purpose I kept it just a little below the great. I’ve become less and less aware of these hypos. So what’s the answer?

Don’t be afraid to go for the great.

Yes that means I have to set alarms. I have to check a little more frequently. (Geez aren’t I checking enough?) I have to get more down with CalorieKing on the fly. I need to log everything, make sure I got my carb ratio just perfectly right. I have to bring down my sliding scale for corrections. Whoever the hell thought it was OK to start correcting at 180? That’s what I’ve always been told. Screw that. I have to lean on the #DOC for support. Only because they’re the only ones that really seem to get it. And my sister of course.

I can do this. #makemalinagreatagain

The New Normal

Everything HAS TO BE Diabetes – whether we like it or not. It has to be our new normal. We have to invite it with us everywhere. We don’t get a break. When it needs us, when it demands our attention, we have to give it. No matter what we’re doing. Or what’s going on. And we have to accept that. Get over it. It just is what it is. Diabetes is a like a newborn that never grows up. And it’s the enemy that waits for you to be vulnerable to attack. You can’t ever cheat. Diabetes will know. Trust me.

But your favorite show is on TV that will last 30 minutes to an hour. Take a break! Enjoy it!

Be A Witness Not A Judge

I have to remind myself of this every day.  It extends to wanting to fix things. Give advice.  Make the world a better place.  I forget sometimes to just sit and observe, without judgement. This includes my own blood sugar numbers.

This in and of itself can change things.  Like the Heisenburg Principle maybe?  This was not meant to be a deep philosophical conversation although it could very well be.  But the profound simplicity of it that I think we as the #doc desperately fight for, yearn for, and need is more witnessing without judgement.  This concept hits home with every one of us for one reason or another.  This concept encompasses #CrossFit, the diabetes police, stigmas, ignorance in general, our very own health care team, and most importantly ourselves.

We are our worst critic.

Witness diabetes.  Even your own.  Without judgement.  

Stop Looking For Love In The Place You Lost It

There was a time I was just going through the motions.  Just barely getting by.  Robot motion.  I always took my long acting.  Didn’t always count carbs.  Didn’t care.  250 was great.  300 meant a shot.  I was in denial.  It was enough.  I thought.  Hoping my pancreas would magically kick in maybe?  Looking for a reprieve definitely.  It was too hard.  It was too much.  I would go a whole day checking my sugar maybe once or twice.  Thought that should be enough.  I was burnt out.

But that’s not enough…  I needed to accept my lifelong pal: diabetes.

My pancreas will never ever produce insulin.  Ever again.  It’s just a fact.  Time to stop looking to my pancreas to pick up the pieces that I have ignored.  Time to start doing the work it will never do again.  It’s a sad thing.  Grief.  It’s OK to be angry.  But I can’t ever afford a moment of denial again.  I can’t go down that road.

Side note:  this does not mean in any way I have given up on proper allocation of resources towards a cure and that the Drs, researchers and scientists will have the inner guidance and revelation necessary to do so and in our lifetime.  It just means I have to play drill sergeant to a bratty disease in the meantime.

PCP Refuses To Treat Me Because I Have Too Many Health Problems

I’m not sure what to call this. I’m not sure how to begin it. I’m in a new area, I was assigned a new PCP; I go to my new patient appointment today and the Dr tells me he refuses to treat me because I have too many health problems. He continued to judge and berate me for being so young with so many health concerns.

This was supposed to be my new found hope towards better health and longevity.  I was stoked. Getting health insurance in my area was the best thing since sliced bread for me! It meant that I could get all necessary referrals to endocrinologists and such.  Then on to… Wait for it… CGM, and pump; all the T1D cool kids tech that helps us live happier, longer lives.

But this Dr refused to even refill my insulin. He said I can’t handle it. You can’t handle it? How do you think I feel? The nurse had to talk him into it and he said ok, just this once.

I shed a tear or two in that Dr office while he’s flailing his arms up in the air. He then says oh great now you have depression on top of it all.

I have never felt more defeated in my life.  I have never felt more betrayed.  This man was supposed to take my life in his medical hands and carry me through.  Nope. No chance here. 

This moment demands me to turn deep inside and find a core strength from somewhere even if I don’t know where. It demands I can’t give up. It demands I can’t buy it.  It demands I know the truth.  I am not too much to handle.  I might be overwhelming to a new primary care provider but I’m not garbage to be thrown out with yesterday’s trash. I felt like I was in a 3rd world country today.  Then thought I probably would have gotten a lot better care in Mexico.  And a hug. 

On the other hand he did refer me out to a shit load of other Drs that he said could help me. But now I have to wait.

This office didn’t even stop to check my blood sugar.

The Cure Party

I never once in my life had any hope for a cure with the exception of the islet cell transplants they were doing back in my younger days. Those failed. I had one quick glimmer of hope and then none. Its not that I am pessimistic. Just a realist I guess.  Insulin was found 94 years ago, come on now. I am not trying to rain on anyone’s parade or anything, seriously.  And I am not trying to justify why I don’t believe or don’t have hope.  But with the advent of @verylightnosuga’s constant mention of it, I came to realize WHY NOT?!

Why not dream and hope and imagine and believe! – even if it will never happen in my lifetime or ever?  Why not throw those imaginary parties in my mind and join the fun wondering WHAT WOULD WE DO?  Can you imagine all of #DOC getting together in one place?  What country would we host it in?  On what island?  What cruise ship? Can you imagine all the cupcakes and champagne and streamers and music? Oh yes, Nick Jonas would sing for us for sure. Ryan Reed would give the toast. Get the picture?!

Then I wondered, what if it really does happen?!

Chasing The Beast & Never Winning

Every 2 hours I check my sugar. Every 2 hours its too high.

Every time I eat I count the carbs, calculatethe ratio, inject.

2 hours later. Too damn high. What did i do wrong?  Inject again.

Maybe my ratio is too low. Maybe I need to increaseit. So on my own I do. I inject an extra unit or 2 the next time. I check it 2 hours later. Too high. Inject again.  Oh I forgot the diet Gatorade that has a few carbs in it. 7 per serving. I only had a sip. Maybe that was it? Im not sure.

I do what I did at lunch for dinner. Sugar crash. Too damn low. What the hell?!

I take my Lantus for the night. Sugar crash at 4 am.

I wake up in the morning. Its a little too high but below 200. Ok but not good enough.

The roller-coaster all day every day all night every night.

Chasing the numbers.

Just for a decent A1C reading. Just so the Drs will be proud. Just so the Endo doesnt look at us sideways. Just so we dont have to hear that we are being non-compliant. Just so we dont get the bloody hell of complications. Just so we dont feel miserable. Just so we dont feel like a failure.

This isnt my fault. Yet every 2 hours I feel like it is. I didnt ask for this but I am in charge.

Right?! Arent I?!

I Dont Want Anyone To Know

My sister found me on Twitter. And I am scared. I dont want her know how hard the T1D life is.

As I get older I don’t want Anyone to know how hard T1D life is.

I don’t want anyone to see my large stash of juice boxes in the car. Sometimes they are afraid to ride with me because of a possible sugar crash.I don’t want anyone to see me check my sugar every 2 hours or know how it can jump because of my gastroparesis or know how it can crash at 4 am to 40 and Im shaking like a leaf, almost blacking out, drunk walking to the fridge. I don’t want a man to know my sugar can crash in the middle of sex thereby ruining the moment. I don’t want anyone to know I cant have kids because I’m too brittle and I have endometriosis. I don’t even want @verylightnosuga to know I second her on wanting to adopt but – at 35 – is that ever going to happen? I don’t want her to know I share her hopes and fears. I don’t want anyone to know how dry I am. I don’t want anyone to know how bad my legs burn, especially at night and I cant sleep. I don’t want anyone to know that I fear every germ or insect bite like a cancer patient.  I don’t want anyone to know how its hard for me to breathe once my sugar gets up over 250 and I have to then watch it like a hawk. I don’t want anyone to know how much I love my pens. I don’t want anyone to know I carry my insulin on ice so I stash it under the driver seat and leave it there. I don’t want anyone to know the nausea that accompanies me almost every single day for whatever reason. I don’t want anyone to know I vomit from the gastroparesis and its my lunch still in tact from 3 days ago. I don’t want anyone to know the terror of a blister on my foot because it could mean the loss of it. I don’t want anyone to know the diagnosis of the myopic shift in my eyes where all of a sudden my vision changes for better or worse depending on my blood sugar. My glasses are never right. I don’t want anyone to know my feet are freezing and its 113 degrees outside. I don’t want anyone to know I cant exercise at this moment because my sugar is too high. I dont want anyone to know how tired I am and how Im always tired. I don’t want the world to know HOW disappointed I am that @driverRyanReed still supports CrossFit.

I dont want ANYONE to know how much the #DOC means to me.

I look well.

I dont want my baby sister to know its never going to better. Its only going to get worse.

A few more things I learned from the #DOC that my DR never told me.

1. Go to camp if you’re a kid. Wish I had. There you meet friends for life.
2. Conferences and such. How cool. I cant wait. I had no clue.
3. Frio packs. Google and buy if you haven’t done so already.
4. Technology. Wow. Drs just don’t tell you whats out there and available to you RIGHT NOW! CGM could save your life.
5. Vitamin deficiencies. D3 and B12 are Very Important. Now I ask that to be included in my blood work.
6. Liver dumping. Now that’s interesting.
7. Statins are bad. Just bad. Looking for an alternative.
8. Meal planning can actually be fun.
9. Low-carb doesn’t have to be gross.
10. Adult coloring books. Yep. Thank you @MollySchreiber
11. Theres tons of books out there.
12. There are really cool famous people who are T1D
13. Not everyone is going to support us, even our own.
14. Advocacy! Just do it! For yourself, future generations and the elderly.
15. Wear a medical ID.
16. Take your T1D with you everywhere you go! Be prepared for everything everywhere.
17. Own it! Own this disease. Because we can!

A few things I’ve learned from the #DOC that my Dr never told me.

I’ve joined the #DOC recently for the first time. And everyone mentions how great it is in passing. Mostly related to emotional support. But there are a few life saving things among other things I’ve learned. We take this for granted. My gratitude is unsurpassed. These are all things my Dr never told me! In 20 years! That’s perspective too! (Thank you Ally for perspective on perspective. :-D)

1. Insulin needs to stay at 35°-45° before opening.

2. Others my age are already going through kidney dialysis. WTF?! I need to get my shit together…

3. Test more often! 3X/day that I’ve always been prescribed all these years is going to kill me. It’s not going to keep me alive.

4. #T1D diabetes sucks. Nomatter how you look at it. We want a cure already.

5. Write things down. Keep a log. It just helps. Period.

6. Everyone else is struggling with the # psychosis just like me. I’m not a loser or a failure because my blood sugar has a mind of its own. Referring to: you do one thing one day, bs is fine. Do the very same freaking thing the next, they are out of this world and off traveling the freaking universe. I’m not alone. The guilt and shame I’ve carried around since a teenager is now going away.

7. The world, people at large, the masses – are completely and utterly UNAWARE of what #T1D REALLY IS.

8. Self Advocacy. We deserve good DRs that listen and if not we are allowed to shop for a new one.

9. Living alone is hard and dangerous. Need to be prepared and take extra precautions.

10. Chats. One chat in particular that talked about health insurance gave me the answers and new information in order for me to get health insurance where I live. No more traveling out of state every month for DRs appts which is Very dangerous for me. My feet go numb after a couple hours of driving. Now I hope to live longer. 😀

11.  Celebrate! What?! REALLY?! Yes! Anything. Everything! Good bs readings, your diaversary, better A1Cs, etc.

Thank you #DOC.