Beginning of the End(o)

This week my endocrinologist is transitioning to a different medical office which is, realistically, too far away for me to travel to for future appointments.  This endo not only is a kind, non-judgmental doctor, but in my head she is dubbed as the “Basal Insulin Wizard.”  She has a knack for knowing which little adjustments need to be made to prevent or to fix huge problems.  She also deals with an inundation of emails in her inbox, mostly from me.  I pride myself on being an engaged patient, but I also understand that doctors do not have much time in the day to get everything done for every patient.

A few months ago I asked her, “Do your other patients email you like this?”

“Not really…” she replied.

And then we both had to take a moment to compose ourselves through a mutual fit of giggling.  Without saying much, we both totally got it.

I am intense in my emails, but I am also fighting for my health.  I appreciate a doctor who recognizes that and works with me.  Current Endo has done that, and I will miss the comfortable relationship we have built over the past few years.  Her new patients are blessed to have her on their team.

So, what am I going to do now?

I’ll tell you what I should have done: started searching for a new endo a few months ago when I was first told of Current Endo’s impending departure.  She gave me a few recommendations for a new endo at that time, and my nurse proclaimed, “If I were a type one diabetic, I would definitely get treated by _____!”  Naturally, I should have then booked an appointment with Endo _____.

But I didn’t.  Perhaps it was a bit of diabetes burn out, and I must now own that.  Perhaps it was a bit of denial that Current Endo was leaving.  Perhaps it was the fact that from a practical sense, I am tired of commuting many hours roundtrip for my diabetes care, albeit I feel strongly about the top-notch care I receive in Boston.

All I can do now is make a plan.  I will pick up the phone and schedule a new endo appointment this week.  Diabetes doesn’t take a vacation, and it certainly doesn’t care that my endo is switching offices.  I will rely heavily on my nurse during this transition period while I wait to meet my new endo.  This situation makes me so thankful for a nurse who is willing to put in the extra effort to help me to stay well.  She will rise to the occasion, and now I must do so, too.

New Endo will not replace the relationship- and possibly not the same skills- as Current Endo represents for me.  And that is okay.  People are inherently different in their attributes, and I am optimistic that whatever my relationship may become with the New Endo, it will be its own unique entity with positive results.  I must be thankful for the calm guidance of Current Endo, and I will remember her for that.

Warming up to New Endo may take some time.  I am a patient highly involved in my own care, and I’ve also made many major changes in my courses of treatment this year (Dexcom CGM, returning to multiple daily injections versus insulin pumping, and taking much larger insulin doses).  This is a lot of information for all of us to process, and sometimes the road may not be free of bumps.

For now, we’re just going to ride with it.

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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.

24. P.S. I Forgive You

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You have been a part of me for 24 years– which is 8,760 days- you selfish, conniving, jerk.

You have pierced my skin over 160,000 times.

On occasion, you have damaged my kidneys and my psyche, my relationships and my view of the world.

They were freak events- both my diagnosis and the insulin pump product defects that plagued me in my twenty-third year of dealing with your crap- but they happened to me, a living, breathing human being who did nothing to ever deserve that amount of suffering.

None of us did.

Today I am not mad at you, though.  I have spent enough time asking “Why?” to know that you don’t care why.  You just do as you do, whatever your flavor of the week is.  Sometimes the stars align and I get my insulin doses right for a day.  Other times, I go to bed frustrated with myself that I didn’t do better, although I know rationally that most of this is not that simple.

I want you to know, however, that there are things that you have not taken from me in 24 years of being an unwelcome guest dwelling in my body.  Through your efforts at taking, you have actually given me things: perspective, friends, academic opportunities, a passion for helping others, the therapies of writing and talking.  There is some reason for all of this, and many times I have known that God- and God-sent people- were the ones who got me through.

Why did I survive a disorienting and quickly-declining 46 mg/dL blood sugar value in my twenty-third year as a type one diabetic?  Frankly, without Dexcom CGM, I wouldn’t have survived, so that’s why.

Why do I read Facebook posts about children with diabetes, fighting back tears as their Moms and Dads document their struggles?  Because I know that these kids will grow up to be kinder, smarter, and more considerate for having gone through it.  And if we have to go through it, we might as well turn out as the type of people everyone would want to have as friends.  We might as well turn the bad into as much good as we can.

Why- as I sat in a waiting room in Boston, the sickest I had ever been with persistently high blood sugar that would not budge no matter what we did, scared and alone- did a doctor sit next to me quietly?  Why did she urge me to receive her treatment after I had run from it months earlier?  Why was she so confident that we could do this?

Why was she right?

We are doing this, and we’re going to continue to do this- to fight back, to live well.    

Why am I blessed when there are thousands of people all over the globe who may not have proper access to insulin and medical professionals?  I don’t know why, but I am cognizant of this idea today, especially.

Now, in my almost twenty-seventh year of existence, I have reached marker number twenty-four with type one diabetes.  It has not been easy, but it has been… something.  Some people never have this chance.  Some people are not diagnosed in time.  Some people die waiting for life-sustaining medication.

“Some people” are people who have feelings and families, and who could have bright futures, too.  Spare a Rose, Save a Child / Life for a Child get it right; those of us who are fortunate enough to have access to insulin can pay it forward with a few clicks of a mouse and a few dollars donated.

At least for today, diabetes, I want you to know that I forgive you.  I haven’t had it as hard as some.  In fact, I can count my blessings because of the perspective that you have given me.  There will be many more times that I will scream my lungs out in frustration with your stupid games.  But if I don’t forgive you right now, I will live however many more diaversaries there may be with a sense of embitterment at the life that I could have had without you in it.

Instead, today I recognize that living despite having you along for the ride is a gift in and of itself.  Please know that I am going to make the most of that life.  Thanks for reminding me to do so.

If you can’t beat ’em, join ’em.

Random middle of the night thoughts, to the tune of Flo Rida’s “Low”:

Shorty got those apple juice dreams,
Snacks are not a cureee,
The whole fridge was eaten by herrr.
Glucose hit the floor,
Next thing you know,
Dexcom flashed low, low, low, low, low, low, low, low…

46.

46

Excuse the blurry image, but I’m sure many of you can commiserate: It is near impossible to take a good photo when your hands are wobbling like leaves in the wind, your heart is beating so far out of your chest that it has relocated itself to your brain where it continues to throb so loudly that you can hear it in your ears, and, to quote Eminem, your “palms are sweaty, knees weak, arms are heavy.”  Yup, that’s a 46 mg/dL hypoglycemic event for ya…

Check out that diamond level ski slope on the CGM, too.  This was not your average low.  This one knocked me on my ass; sorry, but there isn’t a better way to put it.  It was a total beat-down delivered by the notorious bully, type 1 diabetes, and it left me pretty banged up.  I have not had a hypo like that in years.  I iced my bruises and got on with my life afterwards, but the sting was still there, and in some ways, it still is a few days later.

I remember waking up the morning of my senior year of college to a reading of 39 on my blood glucose meter, but I do not remember the same level of “you just got run over by a bus filled with screaming diabetics and then it reversed over you while shooting insulin into your wounds” sort of blood sugar hangover that I endured this weekend.

I must admit that I drank alcohol the night before.  He is a cute guy, he was driving, it was our first time getting drinks, and we frolicked all over the city.  I ate more than I normally do that day, and I monitored my blood sugar closely the entire time.  (You know you’ve found a potential winner when he makes sure to ask if your blood sugar is okay through out the night, FYI).  Anyway…  I am not sure if alcohol played a role here in terms of my liver’s functionality to release sugar.  This hypoglycemic event happened 12 hours after we had been out, and I was not severely intoxicated by any means.  I guess the diabetes guilt trip thing is taking precedence because all I seem to see is “well, this was somehow your fault” if I close my eyes and think about it.  It makes dealing with the reality of the really, reallyyy close call that I had a little bit more bearable in that I can control it in that way: “Bad Ally, be more responsible.”  It’s like the self-imposed diabetic version of the nuns in Catholic grade school, only with fewer trips to the timeout corner.

Well, I’m 26 and I think I deserved a drink with a friend after working and studying all week.  I know that is what my kind doctor would say if she even heard me mention the blame game.  This was not entirely my fault.  I will blog about this extensively later, but I am not in the mood to tell the tale right now.  The long story short is that I experience many problems with pump site insertions almost every time I change the pump.  It is a combination of bad timing and annoying factors; when my nurse finally finds a good location with “virgin skin” to try for a pump site (right now we’ve moved onto the lower back), then there will be some odd defect in the pump product randomly, and so on.  It is a series of unfortunate events that we are working to fix.  I had changed my pump after I got back from going out.  I woke up a few hours later to the Dexcom alerting to a 350 and the nausea that only ketones can cause.  Blah.  I dragged myself out of bed and changed the site, took a manual injection, and set alarms to check on my sugar for the remainder of the evening.

I slowly but surely came down from the high like a deflated balloon.  350 to 300 to 240 to 190 to 150 to 90 to 70 at wake up.  Perfect.  I made a mini bagel which was 20 carbs, ate it quickly, and planned to make eggs.  But then I felt so nauseous that I had to rest my head in bed again.  The nerves kicked in.  I’m low but I feel sick.  Should I call an ambulance?  Relax.  You just talked about this with your doctor.  She told you that you could do it, that you know exactly how to treat a low, that you are not dumb, that you are strong enough to face this.  That conversation had occurred on Monday, and in some soul-searching kind of way it rang in my ears as I consciously made a decision to fight for my life in that moment.  I did not quite realize what was happening yet because my mind was hazy from the low.  I was not simply “low”; I was in fight or flight mode, moments away from passing out.  It was like someone hit me over the head with a few unintended units of Humalog and I was staggering to keep my balance.  I wish that I was being my normal 20-something-year-old-female-dramatic-self, but I am not; this was a dire situation and it pains me to admit that.  I live by myself, so it was up to me to solve this problem in its immediacy.

The Dexcom continuous glucose monitor snapped me out of my fog momentarily to comprehend what was happening.  It was alarming repeatedly and I looked over and saw “LOW” in red writing.  Yeah, I know.  I clicked on the center button to see what my actual glucose reading was and gasped.  46 with a down arrow.  I lethargically stumbled to the fridge and chugged a bottle of juice before eating an entire cabinet full of food.  The rebound high blood sugar was very persistent, but I suspect a lot of that had to do with the fact that my liver had released sugar to keep me conscious while in the throes of the low.

All in all, 46 scared me.  It was a reminder of just how fragile life sometimes is with diabetes.  It knocked me off my pedestal and left a handprint across my face that lasted for hours.  My friends sent nervous text messages; my parents called to check in multiple times during the weekend.  I must accept that sometimes these lows may come out of the blue, as diabetes is a malicious jerk; we’ve been over this.  However, my doctor was right: I have 23 years of practice handling diabetes since my diagnosis at age 3; I know what to do.  But I sure am grateful that the Dexcom CGM was there to remind me as well.

I do not believe that the outcome would have been as favorable had Dexcom’s persistence not been there during the 46.  This is all the more evidence for Medicare and private insurance companies to cover continuous glucose monitoring for all diabetics.  And it is also all the more reason to hug your family, friends, doctors, and nurses tightly, to get down on your knees and pray for a cure, and to continue to support the diabetic online community in its advocacy efforts.  In the past, others were not as blessed to have CGM access as I was this weekend.  That concept is not lost on me.  I carry you all in my heart, and I promise to keep fighting on the bad days because of inspirational people like you.  Thank you…

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.