Better

“Is your diabetic relative’s diabetes as ‘bad’ as yours?”

It was a fair enough question to ask considering the whole #nofilter hash tag often dictates my social media interactions.  The good, the bad, and the ugly are relayed to my followers, and I make no apologies for that.  This is life with autoimmune disease from my perspective, and if I’m going to share that story, I’m going to keep it real.

The question still kind of hurt, though.  I truly didn’t know my diabetes was considered “bad.”  Sure, my A1C is less-than-stellar.  I was overly-vocal about my insulin pump frustrations, albeit I was fighting for my quality of life.  I look back and see the desperation in my words- those spoken and those written– but I never thought that I was going to lay down and let the diabetes wave roll over me.  I was, and I still am, going to fight this.

A good friend asked the question about 6 weeks ago, slowly articulating the words, immediately wishing she could pull them back in before I could snap.  I said something along the lines of, “I mean, we’ve always more or less had similar results in our diabetes management.  But it’s type one diabetes.  There are ‘good’ and ‘bad’ days even if you’re the ‘best diabetic’ out there, and the ‘best diabetic’ doesn’t exist in real life.”

Then we returned to our beverages and talking about our jobs, and until now I haven’t thought much about that conversation.

The truth of the matter is, 6 weeks and a complete 180 degree turn in diabetes management from insulin pumping to multiple daily injections later, I do indeed feel better.  I’m almost afraid to say it because some kind of a diabetic hex might come out of the woodwork and knock me to the ground again.

My transition back to insulin injections is a bit less bumpy now.  My quality of life has started to see sunlight again.  Little things like eating a ranch chicken sandwich for lunch and sending a picture to my doctor (#yay!), bolusing insulin and knowing that it will do its thing to keep me alive when I eat that sandwich, bowling with friends and watching the exercise work its magic on my CGM graph, and having so much fun that for a few hours the CGM graph doesn’t really matter- these things that a few months ago seemed so far out of reach- are now suddenly part of enjoying life.  It feels so good that I am scared of losing it again.

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There is an element of “survivor’s guilt” in diabetes for me at times.  I know that I deserve to be healthy and to enjoy my twenties.  I know that feeling better can be fleeting if diabetes has its say in the matter.  But I also know that feeling better is something I so passionately want and have fought for, so I shouldn’t feel guilty or afraid of the betterment, right?  And even if it does eventually fade away, I will do what every diabetic does: lift my head up and find a different way to fight diabetes until I feel better again.

Moral of the blog post: Do what you have to do to feel better.  If that means writing somewhat corny, sentimental blog posts far too often, tweeting in rapid fire to get suggestions on diabetes management, or completely changing your course of treatment- so be it.  If an insulin pump works best for your needs and your health, utilize that technology if you can.  If you want to take a pump vacation, book your flight.  Using whatever floats your diabetes boat, just try your best to keep on floating.  We deserve to feel better.  And take it from someone who has been in the diabetes trenches: we can feel better.

#FreeDiabetics

I love this movement because it is short and sweet (pun intended).

Check them out at:   https://www.facebook.com/freediabeticsmovement   and   @freediabetics_

We live in a world very much capable of finding a cure for diabetes, but it will take lots of prayers, research, financing, and determination.  Until then, diabetics are imprisoned in a state of constant vigilance regarding high and low blood sugars.  There is no parole when it comes to type one diabetes.  #weneedacure

FreeDiabetics3

Side Note: Very Light, No Sugar suggests looking at Faustman Lab at Massachusetts General Hospital and donating whatever you can- even the $2.00 that you would normally spend on your morning coffee- to help us to one day rid the world of diabetes.

http://www.faustmanlab.org/

Don’t Cry?

As type one diabetics- many of us diagnosed as children- we learned from a young age to be tough.  Grown adults cried like sissies getting their flu shots at the health clinic while we stood still with stoic faces.  One of my strongest memories is of my first endocrinologist’s office. I had just turned three years old and was getting accustomed to insulin injections and finger pricks. This particular office in the Worcester, MA, area performed A1C tests by drawing blood from their subjects’ arms with syringes and then sending the samples off to the lab. Pretty caveman-like if you ask me…

Well, I was three years old and a few nurses were pinning me down to stab me with a long needle. Naturally, I cried. We went back to that office a few more times. I can still visualize the indoor playground they once had in their waiting room, until someone became fearful of liability and it was removed. My mother tried to comfort me, telling me to be strong. “Try not to cry,” she said. What else could she really say? I was going to get shots for the rest of my life, so the sooner I learned not to fight this concept, the better for all of us.

At the next appointment, I bit my bottom lip and braced myself for the impact of the syringe in my tiny arm. I didn’t cry my usual amount, but I whimpered a bit.

“I didn’t cry!” I proclaimed as we walked through the parking lot afterwards.

“You didn’t…?” Mom asked.

She was not trying to come off as cold, but was rather incredulous at how my young mind had just rationalized away all of the tears flooding the examination room a few minutes earlier.

I had the three-year-old version of an “Ah ha” moment, in which I realized that okay, I had cried. But I wasn’t going to cry anymore. I resigned myself to this fact, and at the next appointment I did not cry. I had accepted my fate in some small way; shots were here to stay.

Shortly thereafter my parents took me to the renowned Joslin Diabetes Center in Boston, a decision partially prompted by the fact that their A1C tests were performed with simple finger pricks as opposed to modern-day torture tactics. Over two decades later, I am still a Joslin girl. And I still fight back my tears sometimes, but I am slowly learning that it can be healthy to let them out once in a while, too. There is certain strength in vulnerability, in showing that you hurt emotionally and/or physically but that you are going to get through that pain.

I cannot speak for every type one diabetic out there, but I would venture to guess that some of you have difficulties letting your guard down at times, too. How can we complain about a head cold when we have endured thousands and thousands of injections over the years? I can’t believe my boyfriend is upset that he lost his football game! Seriously?!!  But the reality is that these are human emotions and normal trials and tribulations of life, even if these situations are not a life or death fight as diabetes sometimes can be. It is more natural to express what you are feeling than to avert your eyes to the ground while feverishly blinking back tears. Trust me, I have been there, done that, and many times at that rate.

I see today that my mentality of always being strong was a survival tactic yet a detriment all at once. Some days I have a quick temper because it is easier to be angry than to acknowledge being scared or defeated.  I am my own worst enemy when it comes to epic PMS-y Facebook rants, but this is an excuse.  Sure, we were dealt very frustrating hands by being diagnosed with diabetes.  The general public misunderstands the constant battles we endure.  We rarely get a break from the burdens of this disease.

But at the same time, if I cut the BS and allow myself to say, “Okay, your blood sugar is high and you’re afraid of the long-term damage this could do to your body, and you’re tired from being up all night responding to Dexcom alarms, and you’re stressed with ‘normal people’ factors like work and grad school,” then yeah, I am a human being. It is okay to cry.  It is okay to be fearful.  It is okay to feel, to admit that sometimes pump site and CGM changes hurt like hell even though you told yourself that the pain was the least of your problems years ago.

And I said that yesterday, too. To which my doctor replied, “But it’s not the least of your problems if you’re shooting a pump site into muscle because you have no ‘real estate’ left that is free of scar tissue.”  Fair enough, and directly to the point.  She is right.  Acknowledge that it is a big deal, Ally.

Sometimes crying makes one braver than not crying.  At least crying invokes honest, real emotion from which we can grow.  I’m ready to ditch the war paint if it means connecting with others on a more meaningful, understanding level.

“My doctor is showing up, so I probably should be, too.”

A friend- let’s call her Kayla- made this comment in a grad class we are taking together this month in regards to her former interactions with a doctor.  As a teenager, Kayla was understandably a bit defiant in terms of complying with her physician’s advice.  Weren’t we all?  But one day she had an epiphany: What was the point of attending the appointments if she was not willing to be open, honest, and determined in the process of seeking care?  “My doctor is showing up, so I probably should be, too,” Kayla realized.  She changed her outlook and told the doctor her concerns while soaking up his recommendations, taking baby steps until she was comfortable to set more progressive goals along the road to getting better.

The class laughed and we all nodded our heads in agreement.  We can go to the doctor multiple times a month to get bandages placed on our respective health maladies, but this is only temporary relief for pain and suffering that is long-term in nature if it involves chronic illness.  We must not simply “show up” with our physical presences, but also with our attitudes.

I have a doctor’s appointment tomorrow and I hope to carry Kayla’s mantra with me.  I want to “show up” with my “game face” on, ready to tackle the issues.  My doctor is strong for me every time I seek her help, so I must, in turn, be brave when making the adjustments she suggests.

Thank you to everyone who offered words of support during my rough day yesterday.  Unfortunately, those days happen more often than I would like for various uncontrollable reasons.  Chronic illness is like trying to stop a leaky faucet by clogging it with a piece of Swiss cheese.  When you fix one spot, another issue can always arise.  My pump site is working well today, but my allergies might cause my liver to release sugar and my blood glucose levels to increase, for example.  Alas, it is a new day and I am thankful that the diabetic online community understands what I mean.

Enjoy the rest of your weekends.  Here’s to a week of good health for everyone.

Dear Concerned Caregiver,

Thank you for being brave enough to reach out to Dear Ally.  Seeking out help is never easy, but it gets simpler once you actually ask for it.  Congratulations on accomplishing the first step.

“D” sounds like he is conniving at times, but judging from your editorial, I think he can be tamed.  It will require you to put in hours of work every day, and some days no matter what you do he will not listen.  I would never recommend that someone stay in an abusive relationship unless serious counseling and professional help is sought, and even then it can be a tricky situation.  But your relationship with D doesn’t quite fall into the abusive category.  It seems that he is intertwined with your life, and this does not have to be in a hurtful manner.  You are not D, and D is not you; but you are an essential part of one another.  I mean, 20+ years together!  You can’t simply throw in the towel now.

Some days D will ruin your mood, and that is okay.  This is part of being human, and no one should make you feel badly about it.  The people who offer corny advice are not worth the frustration.  They may have suffered in other areas of their lives, but this is a topic that they may never understand if they are belittling you during your difficult days.  Do your best to enlighten them, but do not get hung up on them.  Focus on you and D and what you need to do to create a more open relationship.  Take care of yourself first and foremost- emotionally, physically, intellectually, socially.  Once you are revived, you will be able to offer D more of what he needs.  And he, in turn, may start to treat you better.  Every relationship has its peaks and valleys, and yours will be no different.

Keep the faith.  Hold your head high.  You are trying your best.  One day D will mature and comprehend everything you have done for him.  For now, when he stubbornly wreaks havoc on your day, try your best to remember the other people in long-term relationships with D’s of their own.  These people are survivors, fighters, dreamers, advocates, friends, coworkers, cousins, and so on.  They mean something to the people who love them, whether D is involved or not.  Listen to them.  Soak up their advice, their lighthearted takes on subjects like D that others do not understand.  Be strong for each other and you will all be okay.

Best of luck,

Ally

Sun’s out, pump’s out.

99.987% of the time that I change my insulin pump, I deal with stubborn high blood sugars for a few hours afterwards no matter what I do.  It frustrates the heck out of me, but in some ways I don’t blame my body.  I’m sure its internal dialogue goes something like this with every new poke and prod: Why the efffff does this girl hate me so much?!!!  More to come on pump site changes later, but my simplified theory for the time being is that there is a learning curve where the body adjusts to the new site.  Whatever, it still doesn’t make it any easier to endure…

Anyway, I woke up this morning around 5:00 am to see that my BG had dropped to 180 after being in the 250s post-pump change.  Progress, but not good enough considering I wanted oatmeal for breakfast.  My bladder wasn’t happy, either.  As I dragged myself out of bed to get to the bathroom and to take a mini-correction dose of insulin, the light from the window attracted my eye.  Diabetes generally has horrible timing, but in terms of catching the sunrise, it was right on point this morning…

Sunrise

True Life: I’m afraid of spiders and insulin, in that order.

Without fail, every summer night when I go outside to get in my car, a few yellow spiders are hanging out on the hood and roof.  When I approach, they look at me as if I am interrupting their block party.  After catapulting myself into the driver’s seat a la Angelina Jolie in Tomb Raider, I give myself the “spider pep talk.”

“Ally, you are better than this.  It’s one moment in time.  Try to forget about them and get on with your life.”

If only the “take your insulin” pep talk was that easy…

Every type 1 diabetic understands the rocky relationship that we entertain with insulin.  We can’t live without it, but sometimes living with it makes the act of living really, really difficult.  Like the times when it almost kills us at 3:34 am with a blood glucose reading of 45 mg/dL when we inadvertently over-calculate the spike effect of pizza for dinner by bolusing heavily.  Or the times when we hit a bad pump site at insertion and the cannula kinks and suddenly we want to drink water out of a fire hydrant like dogs do in 1960s cartoons.  Those times, and any other times that insulin doesn’t work perfectly.  Which is almost every time.  Because. insulin. does. not. replace. a. normally. functioning. pancreas!!!!  As we have all heard many times before, insulin sustains life, but it is not a cure for diabetes.

I will delve further into my own struggles with insulin as we progress in our blogger-bloggee courtship, but for now just know this: I sincerely appreciate the discovery of insulin and how much diabetes technology has changed over the course of my 23 out of 26 years of life spent as a type 1 diabetic.  Every time I go to Joslin Diabetes Center in Boston, I look at the murals on the walls in the lower level of the building which depict some of the history of insulin, and I am so thankful to be a diabetic “now” as opposed to “then.”  But I also fear and respect this life-saving commodity for the abusive lover that it sometimes is to all of us.  I have a tendency to “under-bolus” because of the trauma that over-bolusing has caused in the past.  Whew- the hardest step is admitting that you have a problem, right?

We are stuck in an ongoing oxymoron of sorts.  We can’t take too little insulin or our sugar will be high; we can’t take too much insulin or our sugar will be low.  And many of us grew up with the dreaded lecture from (insert whoever is applicable for you) ____________ (doctor, parent, school nurse, etc.) if we did not perform flawless algebra to compute the correct “insulin to carb to exercise to stress to illness to social life” ratios every time we took insulin.

But you know what?  Once I admitted that the problem was there, a doctor looked me in the eye and told me that it was okay.  Hers was not a lecture of blame.  She told me that I could forgive myself, that I did not have to spend the rest of my days in self-imposed “diabetic timeout.”  She told me that it was normal to be frustrated, that trying to play the role of a perfect pancreas every day was “not a good look” because it was essentially bullying myself, giving myself that loathsome lecture that I never really deserved in the first place.  But why give yourself that negative commentary when you fully understand that diabetes is not so cut and dry?  You are not an outsider to the disease, so do not treat yourself like you are.

I understand that I have the tools to do this, to improve and maintain my health. Not carrying “survivor’s guilt” of sorts is difficult for all of us who put in 110% effort every day only to have diabetes knock us on our asses with a herculean effort when we least expect it.  What truly matters is that we have already entered the boxing ring.  We have given ourselves the “insulin pep talk.”  We have calculated the carbs in the 5 crackers that we snacked on and pressed a few buttons on our insulin pumps to account for them.  And if we forgot to do so, or if we mistakenly took half a unit of Humalog less than what we should have taken to achieve an ideal blood sugar goal, so be it.  We have tomorrow, and the next day, and the next day.

And we keep showing up at the boxing ring ready for a fight, which is more than most people can say…