The Real Patient Portals

For privacy purposes of those discussed here, some of the details of this blog post have been altered/omitted. The heart of the story remains the same.

 

To avoid the throbbing headache that is commuting from Providence to Boston during morning traffic, I stayed over in Massachusetts prior to my Joslin appointments this week.

I hoped to catch the end of the Providence-Villanova game at the hotel bar, but the thrashing PC was receiving was so embarrassing that the bartender instead flipped between The Voice and the Bruins. I asked a patron if the seat next to her at the crowded bar was available, and she nodded. The restaurant was busy and it seemed like it would be a while before my dinner was delivered, so I took a big gulp of my classy Bud Light and vowed to make friends while I waited.

“Are you here for business?” I asked the professionally-dressed woman.

“Actually, my child is being treated at Children’s Hospital.”

“I’m sorry to hear that. But your child is in phenomenal hands.”

“Yes, we have been here for a long time, but soon we will travel home with a stronger, healthier child. We have been very blessed.”

And so we talked for almost an hour. We discussed her home many miles away from here, admired the nurses who followed their professional callings to ease the suffering of their patients, educated one another on our respective areas of patient or caregiver knowledge, and, to be quite honest, took solace in finding a bar buddy who understood the stress and anxiety of Boston medical appointments. Sure, I seek out care in Boston because it is the best, and this lady does, too. But that doesn’t make it any less gut-wrenching every time the appointment days arrive.

We eventually wished each other well and parted ways. I want to give SuperMom an anonymous shout out here, though, because of the example of strength that she provided that evening. I have so much respect for the parents of any child who faces illness- whether that be type one diabetes or something else. Being the patient for most of my life, I have mainly been preoccupied with my own suffering- something I know that I can and will handle.

Watching others suffer, though, makes me nauseous, anxious, and somewhat frozen in “What do I do?!!” mode. SuperMoms and SuperDads don’t have the option of “What do I do?!!” mode. They activate “Do” mode because their child is hurting and they want the pain to stop. They remain calm when the world is shaken up around them. Yes, they have days of sadness and tears, but they try their best to provide their children with the greatest lives possible, to comfort them on the rough days, and to keep on going.

So, to SuperMom at the bar, cheers to health and happiness for you and your family.

The next morning, I hastily checked out of the hotel and made my way to Joslin Diabetes Center, where I had one thing on my mind: very light, no sugar coffee, and even better if you can hook me up to an IV drip of it.

I generally enjoy my Joslin experience because it is one of the only places on earth where I feel completely safe from a diabetes standpoint. If I go low or high, there are plenty of people who know how to help. But this time, I was nervous and emotional, as it was my last appointment with Current Endo before her departure; additionally, these days are quite frankly long and exhausting no matter what the outcome is.

I fumbled my way to the coffee stand through a haze of anxiety.

“What’s ah matter, my darling?” the coffee stand employee cooed, her brow furrowed.

“Oh, nothing. I just need some coffee to wake up,” I said, shrugging it off.

“I asked how your morning was and you didn’t reply,” she sounded off, much to my surprise and admiration. (I like a person who tells it like it is!)

“My apologies. I must not have heard you.” My level of distractedness due to nerves was obvious now.

Without skipping a beat, she looked me straight in the eye and stated, “You will be okay. You are so strong.”

This kind woman had never met me before. She had no prior knowledge as to whether I was in the hospital district of Boston as a patient, a caregiver, a sales rep, an employee, or so on. But she knew, without hesitation, that I was hurting simply from the look in my eyes. She seemed to recognize that I was the patient, and that I was trying to keep it all together. Her confidence that I could do this was the gentle nudge I needed to go check in at Joslin, ready to take on the day and whatever it would bring.

Blinking back tears, I thanked her for her reassurance and sauntered off with coffee warming my hands and coffee shop lady’s words warming my soul.

After my appointments, I needed more coffee before racing back to work. I stopped at the same coffee kiosk, and the same employee was still there. I filled my cup and went to pay.

“You were right. Everything was okay. I wanted to thank you for what you said earlier. You made me feel better.”

“God will take care of everything,” she replied.

“Yes. And there should be more people in the world like you. Your joy is contagious.”

And we both fought back tears, nodded our heads in agreement, and vowed to pray for one another.

Bars and coffee shops are the real patient portals. These are the watering holes for the warriors- the patients and the caregivers- to assemble and collect their emotions. Here, the pep talks happen. The fears and aspirations are relayed. The hugs are handed out a little more freely. The tears are dried if necessary. God is there, as these women proved to me this week.

Lucky for me, I’m always thirsty. Something tells me I’ll be back soon.

To SuperMom and SuperCoffeeShopEmployee, this blog post goes out to you. You are both inspirations. Thank you…

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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.

Pros and Cons, Do’s and Don’ts, X’s and O’s

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I could write a 200-page manifesto about the ups and downs of 2014 while insulin pumping and then transitioning to shots, but for the sake of not straining our eyes by reading a mile-long exhaustive blog post, here are some main points worthy of highlighting:

Pros of Shots:

  • I know with certainty that insulin is getting into me.  A reliable insulin delivery mechanism is something that I will never take for granted again.  There is something to be said for a good, old-fashioned jab with a syringe.  Plus, ketones have packed up and moved out for now.
  • The mental relief that this offers is difficult to articulate.  We are slowly but surely building back trust: a trust in insulin that it will do its job, a trust in eating a nutritious meal and knowing that insulin in my body will cover that food, a trust that I will not wake up in the middle of the night in a ketonic state, and- frankly and in violation of the “double negatives rule”- a trust that I will not not wake up one day due to ketones.
  • Trusting in the doctors’ knowledge:  While taking over twenty units of long-acting insulin such as Lantus after a decade of pumping might not be a big deal to some diabetics, for me it was a huge mental mountain to wrap my head around.  Multiple doctors chimed in throughout this process, thankfully.  One in particular yielded emails at all crazy hours of the weekend.  And the other reassured me over the phone that I would be okay, her voice calm and confident.  On the first day of injecting, I said a quick prayer and reminded myself that these doctors went through graduate and medical school and have been doing this for many years; I had to believe in their expertise.  So far, they have proven that they know their stuff!
  • Taking long showers without rushing to get out and reconnect to life-sustaining medical equipment.
  • Only one insertion (Dexcom) about every two weeks.
  • Wearing only one site (Dexcom).
  • Crossing a “Never Have I Ever” trump card off my list- at least if playing with other diabetics.  (I never liked that game, anyway).  “Never have I ever given myself an insulin injection in the stomach…”  Oh wait, I just did it three times today without flinching.
  • Finding the humor in the situation.  For example, shooting up at a rest area recently while a horrified mother spotted me and promptly peeled out of the parking lot, the wheels of her minivan screeching, after she unfairly assumed that I was a heroin junkie.  Far from it…
  • I don’t need a behemoth-sized-suitcase filled with back-up pump supplies when I travel.
  • Trying new things:  Even three months ago, I never would have consented to trying a different way.  I have the #doc and some very patient, compassionate doctors to thank for renewing my strength and for holding me up on the bad days.
  • Honesty.  This process has made me more upfront with myself and my doctors.  For years, I skirted around the issues, felt trapped in one method of diabetes treatment, and perhaps did not accept how multifaceted my insulin pumping problems had become.  No one likes to feel desperate, but I can see in my old blog posts, emails to pump reps, tears cried to my doctor, and so on that what I was doing on the pump was not working as optimally as it is intended to; hence, we needed to at least try something else.  A few weeks later, here we are…

Cons of Shots:

  • I’d be lying if I said I didn’t miss the pump (very strong emphasis on the “good pump site” days).  The stability in my blood sugar was better on the pump, but perhaps some of the severity of the recent “shots rollercoaster” is the fact that it’s only a few weeks into the trial and we have a lot of insulin dosing details left to address.
  • The pump is much more convenient.  Out of habit, I still reach down to my side to take a correction bolus with my invisible pump friend, only to find him missing in action.  I am in the process of waiting out an insulin pen prescription, and I hope that this makes things a bit easier in the day-to-day aspects of shots.  Currently, I prefill some syringes with typical Humalog doses or I manually fill the injections, making it a somewhat timely and tedious process.
  • Shots require more thinking.  I have to really focus when I draw up the amounts.  I quadruple-check that I have drawn up twenty-three units of Lantus, rather than Humalog.  (My doctor recommended using nail polish on the insulin boxes and bottles to help differentiate between them.  I know that there are colored lids, ties, etc., that you can also purchase.  The bottom line is that you want something that will catch your eye and make you focus on taking the correct type of insulin).
  • Where, oh, where, have my temp basals gone?  Plus one for the pump in that regard.
  • Once the insulin is in you, it’s in you for the day.  Currently, I take one Lantus dose daily, but we may transition to twice a day for some fine-tuning.  I am too high during the daytime, but at night I crash harder than a college kid at her first keg party.
  • Bruises.  Lots of them.  My hand-eye coordination has always been a bit defunct (i.e. my kindergarten teacher sent a note home telling Mom to have me practice cutting and coloring in-between the lines over the summer).  Perhaps this deficit is why I simply suck at shots.  It’s the opposite of “you can give it out but you can’t take it.”  Actually, I am pretty darn good at taking shots without any tears, but when it comes to giving them, the “stab repeatedly” method doesn’t work so well.
  • Lantus burns.  It’s not excruciating, but it’s there.
  • Socially, it’s either inject in public, or scurry off to the bathroom for every injection.  Because I find that I really have to concentrate when taking Lantus to make sure I’m drawing up the right dose, of the right medication, at the right time, I often take that shot in the bathroom at work so that I can have some privacy to focus.  I do not have much shame about taking injections in public, but it is more the “always having to have the diabetes conversation” element that I sometimes would rather avoid.  However, I have done many injections in my abdomen at work and in the local coffee shops, and no one has noticed.  On the plus side (I think?), my friends are eager to puncture my skin with a needle whenever they can have the chance; so far, I trust my mediocre injection skills over theirs.

Do’s of Shots:

  • Consult your doctor(s).  Consult the diabetic online community.  Weigh your options.  Take action if you are ready to try something new.
  • Write down all your pump information, such as basal rates and carb ratios, so that you have it handy if needed in the future.
  • Tell someone what you are doing.  Transitioning from the pump to shots after many years of pumping is scary and it is an educated-guessing-game under the guidance of medical professionals, as most diabetes-related things are.  During this time, there is a slightly-elevated risk that something out of the ordinary may happen, such as a severe low blood sugar due to an inadvertent insulin dosing mishap.  I emailed a few friends at work one day when I was not feeling well, on the off chance that an emergency did occur; I told them the name of my diabetes clinic and some basic information about my transition back to shots, on the very rare chance that I may not be able to articulate these facts myself to an emergency responder if a bad situation occurred.
  • This is another reason to have proper medical identification.  You can read more about this under disclaimers and disclosures, but MedicAlert has served me well for over twenty years.  I feel comfort in knowing that my medical and contact information is stored in their database, and that if I were ever unconscious an emergency responder would know that I was type one diabetic simply by reading the back of a MedicAlert medical identification bracelet that I wear at all times.
  • Restock on supplies: glucose tabs for the car, juice at the office, etc.
  • Understand that you may require more insulin in your boluses than you currently do on the pump.  My correction factors and insulin to carb ratios have changed significantly as we iron out the Lantus details.

Don’ts of Shots:

  • I do not regret trying shots.  My doctors and I were ready to do this in this moment.  In hindsight, however, I picked a rather difficult first week to test out multiple daily injections again.  Guys: You’ve been warned.  The next few sentences discuss female stuff.  #sorryimnotsorry 
  • A few days prior to the beginning of my cycle, my hormones seem to have an epic party where they are up all night chugging Red Bull and taking vodka shots within my body.  My blood glucose refuses to budge from its perch high atop the elevated blood sugar peak, despite increased insulin doses which are sometimes quadruple my normal amounts.
  • Dealing with this frustration on top of re-learning shots, as well as having planned a purposely-conservative Lantus dosage with my endocrinologist for the first few days just to be safe, created a high blood glucose dilemma for us.  I was stuck in the 300s and 350s for days on end, and was more or less feeling miserable.  Once the hormone block party subsided, things evened out a bit and I began to feel much better.  So, for the ladies, I would recommend planning around the week of your cycle if you are interested in transitioning back to shots anytime soon.
  • Don’t switch back to shots solely because you do not want to be attached to a medical device at all times.  To be honest, I have not felt an overwhelming sense of “freedom” being without the pump; in fact, I miss it for its good aspects quite a lot.  It was cool for like, a day, to have one less site to worry about while showering, but all in all, this should not make or break your insulin management decision.
  • Don’t throw in the towel quickly.  I’ll admit, I was ready to do so based on the first few days of non-stop highs.  I verbally committed while on the phone with my doctor to try for a week, and then I tweeted it out to make sure I held myself to that goal.  On the first week of the trial, the stubborn Italian part of me was not going to give up until Saturday, which would mark the full seven days of shots.  On Thursday, I emailed another doctor and asked the question that I wasn’t answering for myself: “So, I should try this shots thing for more than a week?”  She encouraged me to continue with the shots.
  • I was looking for her affirmation and for someone else to make the tough call, and I am happy now that she gave me the tough answer.  It was a difficult first week, but by the second week it was infinitely better.  Now on the third week, we still have things to tweak and my blood sugars are far from stellar, but I do feel better and there is insulin getting into my body.
  • The back to the basics, simple things about insulin are now appreciated more than ever.  I take a shot and I watch insulin do its thing.  In that regard, I am truly blessed to have access to this life-sustaining medication and to doctors who can tell me how best to use it.

X’s and O’s:

Consider this a big virtual hug to each of you for being my sounding board during a trying time in my diabetes journey.  Knowing that someone out there was reading this and perhaps going through a similar trial, receiving innovative suggestions to insulin management, perusing your blogs and tweets, and overall feeling the strong sense of community is what made the hardest part – taking the first step, or, in this case, the first shot – totally worth it.

My long-term plan is to continue this shots trial for another month or so and then perhaps switch back to the pump with reduced pump basal rates and some background injected Lantus basal as a precaution for faulty-pump-site days.

I feel blessed to have made so many friends in the diabetic online community and to have a health care team that has steadfastly worked to make me feel better.  One day many months ago, when my head spun from ketones-induced nausea after another failed pump site, I thought to myself, Maybe I should start a blog?  There must be someone out there who “gets it,” too?  Today, having been encouraged to fight for my health through the inspiration of the #doc, I lift my very light, no sugar coffee cup to you.

Thank you…

XOXO,

Ally

“Control”

I’m not the first one- and I certainly won’t be the last one- to say that in the context of any chronic disease, the term  “control” needs to be replaced by “giving it your all.”  Our choice of words affects how we emotionally-process the inevitable rises and falls of everyday life with a health condition.  We cannot simply throw a lasso around a chronic disease and call it a day, so let’s make a concerted effort as patients, health care professionals, and most importantly, human beings, to honor the effort that it takes to live with chronic disease through our choice of words.

 

diabetes coaster

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…

“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.