Sunday, November 12, 2017

Always There

National Diabetes Awareness Month #NDAM November 2017.  And how am I participating.  Every year has been different.  Last year my focus was difficult as at the beginning of the month I had to perform CPR on my neighbor who passed away in spite of my efforts.  And she had diabetes.  It put a pit in my stomach to think about the life of my boys battling this disease.  That pit never seems to leave.  Some days I pretend to not notice it and other days it is the only thing I notice.

This year is different.  I have made so many changes.  I keep trying to focus on the positives.  It is a constant challenge.  I have gotten even more active with JDRF and that is making a difference.  Last weekend I even participated on a panel at our region's summit with three doctors on T1D Triggers.  It was quite interesting.  Next weekend I am participating in a Severe Hypo Patient Advisory Board with Lily.  I want, no need, to make a difference.  And yet at home I struggle.

Drago is 17 now and diagnosed over two years and SugarBear is almost 13 and been at this for almost four years.  I sometimes forget what life was like before all of this, before I knew.

Halloween had me changing out a pod on my Starry (K)night 10 minutes before handing out candy.  Constant.  Never ending.  Always there.

Heading home from work one day after running just one errand (grocery shopping) and getting a text and a call that Drago needs fast acting sugar as he is severely low.  Constant.  Never ending.  Always there.

Checking blood glucose at 3am with a headlamp and blurry eyes to see 418bg pop up and realizing I have to poke my son again to check ketones and being relieved they are only trace but recognizing I will be up dealing with it until I leave for work at 5:30am and handing it off to my husband with fingers crossed.  So sleep deprived.  Constant.  Never ending.  Always there.

Waking early on a day off because the Dex alarms that SugarBear is 44 and dropping.  Trying to wake him to drink a juice and having him take an arm out of his shirt for a pod or Dex placement because he is still asleep and isn't comprehending what is going on.  Constant.  Never ending.  Always there.

So I post awareness stuff on social media and wonder if anyone besides those that already know are being reached.  I think I'm too vocal and scare people off.  I think diabetes is Constant.  Never ending.  Always there.

I meet people newly diagnosed.  Those with it like us for only a few years and those celebrating milestones like 5, 15, 25, 45 years living.  Constant.  Never ending.  Always there.

Day in, Day out.  Every day.  No vacations.  No breaks.  Constant.  Never ending.  Always there.

But I hope.

I hope my boys know that I will catch them.  I will do everything I can to make this life better for them.  I will make the appointments, get the scripts filled, check BG when they are sleeping, wake when needed, advocate, inform, push for change.  That I will be a Constant.  Never ending.  Always there.  Because I am their Mama and I won't stop.

So their Dad and I will continue our vigilance.  We will be Ralph and Sam from Walt Disney, passing each other on our way to "work".  We will make sure they are okay.  Constant.  Never ending.  Always there.  Because we love them.  Because we care.  Because it is necessary.

Sunday, September 3, 2017

It is Always Something

At one point in my life before the boys were diagnosed with Type 1, I had a friend that lived in my neighborhood.  She had a son close to Drago's age.  We tried to get together a couple times a week but it wasn't always possible because we were dealing with some health issues of my husband's and my own.  She decided we could no longer be friends because our family had "too much drama."  Pretty soon after that she moved and I have no idea where or what happened to her.  I wonder sometimes what she would think now.

SugarBear a.k.a. MonkeyMan or Cyborg now:
Migraines, Type 1, Hashimoto's hypothyroidism, vitiligo, and psoriasis.

Migraines, Type 1, GERD, vitiligo, gastropareisis, bilateral pars defect at L5. There is grade 1 anterolisthesis of L5 on S1 (basically a fracture in his spinal vertebrae that has "slipped", and dysautonomia/P.O.T.s (postural orthostatic tachycardia syndrome).

Vitiligo, psoriasis, psoriatic arthritis, talus coalition, neck vertebrae lipping, double knee replacements, Type 2, diverticulosis, neuropathy.  Permanent disability.

Endometriosis, shoulder surgery for rotator cuff, PVCs and PACs (preventricular contractions and preatrial contractions), and four slipped discs.

And I am the healthiest.  Although right now one of my discs is not playing nice and I am on a short term leave of absence from work.  Hopefully the shots I am having done on the 14th alleviates that issue for me for awhile.  I have to function.  I have to.  I juggle all of the health needs.  I do the research.  I make the appointments.  I keep our life going.  The new issues going on with hubby and Drago are causing me concerns.  Definitely drama.  Drago has dizzy spells where he feels like he is going to pass out not related to his Type 1.  He has consistent tachycardia that causes his chest to hurt, palpitations, shortness of breath.  His nausea is severe making eating and dosing insulin correctly tricky.  He has severe fatigue.  He has brain fog that effects his learning.  POTs is challenging.  We are trying to find a doctor that will help him, that won't say just drink more fluids and have more salt.  And hubby-foot pain and swelling from neuropathy.  His joints, especially his shoulder, are constantly in severe pain.  And me needing more help from all has been a burden.  More drama.  And woven through all of this mess is Type 1.  Lows, highs, pump changes, Dex changes, dosages of insulin.  It never rests and doesn't really let us rest either.  We need rest.  We need fun and outings and friends and life.  We don't need drama, we don't want it.  We don't go looking for it.  But it seems to find us.   The day before my shots my husband and I will celebrate our 20th wedding anniversary.  We've dealt with a lot in twenty years, because it is always something.

Sunday, July 16, 2017

Marshy! Marshy! Marshy!

When the ground isn't solid underneath you one gets pretty good at balancing and adjusting.  You have to keep moving because staying in one place will cause you to sink.  When constant change is one's norm it is easy to forget what that would feel like without it.  And then when you get a brief glimpse of that solidness and you embrace it, slamming back into that change is hard.  Transitions are never easy and life with Type 1 is a life of transitions.

The boys got back yesterday from T1 diabetes camp where each cabin has two counselors (both with the disease) and a doctor and nurse taking care of them while they experience typical camp life--archery, horseback riding, wall climbing, silly messy games, fishing, bb rifles, rain, sunshine, bug bites, camp food, etc....of course their camp is a little different, all the kids have to check blood glucose and give shots of insulin or change pumps and treat high blood readings and low readings appropriately.  Drago even told us one night he had to eat peanut butter sandwiches because of falling blood glucose in the middle of the night and somehow would fall asleep in between bites on to the sandwich.  Camp life can be challenging with a disease like T1.  But there are so many benefits.  The boys feel "normal" at camp.  This year both the boys went to camp on pumps and with Dexcoms (cgms).  When we picked them up yesterday only Drago had his pump on and neither had their cgm on.  I was a bit surprised SugarBear decided he wanted to do shots all week (that means a shot with every bit of food and for corrections of highs as well as the stinging long acting lantus shot every night which at minimum is four shots a day).  Anyway, the boys had a terrific week.  They are covered in bug bites and too much sun and came with very smelly clothes!  SugarBear even said "maybe" to going back next year where in the previous two years he has always said no right after camp.  Drago said it was the best year so far.

Hubby and I had a super fun week chock full of seeing friends, sleeping as much as we could, and generally doing the things we don't normally get to do. The ground was solid underneath us.

Transitions:  before we even left the campground we had the boys check their blood glucose levels because without that CGM window you feel like you are flying blind.  Drago was on the lower end of range and SugarBear was high.  We talked and laughed and the boys regaled us with camp stories about contraband like food in the teens cabin and one about one of the teens breaking his wrist at camp!  Smiles and happy to have them back with us.  And the monsters crept back in.  "How are you feeling?"  "Check your blood sugar, please?"  "I know you want to shower but you have to check first?"  "Did you bolus /give a shot for the food that you just ate?"  "How much did you give?" "When do you want to put the Dexcom back on?"  "SugarBear, we have to put your Omnipod on at 10pm."  Etc...etc...etc...and then part way through the slam back into this life yesterday I realized something.  SugarBear had no devices attached to his body for the whole week!  Neither boy had to carry a kit the whole week!  For a moment they had "freedom".  They had solid ground.  And I stopped.  I told them we could wait to put the Dexcoms on.  I gave SugarBear a choice-we could put the Omnipod back on at 10pm or we could do Lantus and he could have another night and day without another device added on to his body.  And Drago showered without checking his blood glucose first and put off changing his pump site out until the next day.  Both boys ended up with their Dexcoms back on and SugarBear decided to put the Omnipod back on but it was their choice, I stopped pushing for my solid ground, I gave them theirs.

Wednesday, May 17, 2017

Access isn't Equal

"It's Day 2 of Diabetes Blog Week, with 105 bloggers officially signed up.  Today we're discussing The Cost of a Chronic Illness.

Insulin and other diabetes medications and supplies can be costly. Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage. So today, let’s discuss how cost impacts our diabetes care. Do you have advice to share? For those outside the US, is cost a concern? Are there other factors such as accessibility or education that cause barriers to your diabetes care?"

I didn't get to write this yesterday because SugarBear is sick.  Fever, sore throat, roller coaster numbers, ketones, vomiting, feeling just awful.  Today I have a moment, not because SugarBear is better he isn't, but because I'm staying home from work to care for him.

Insulin for pumps 
Insets for t-slim pump for Drago
Cartridge and tubing for t-slim pump for Drago
Pods for Omnipod pump for SugarBear
verio strips for Drago
freestyle strips for SugarBear
verio lancets for Drago
freestyle lancets for SugarBear
Alcohol swabs
Unisolve remover 
Numbing cream
Sensors for Dexcom for both
Transmitters for Dexcom for both
glucose tabs for both
glucagon for both
backup lantus insulin for both
backup pen needles and syringes for both
both cartridges and vials of novolog insulin
grif grips
skin tac
vet wrap
juice boxes
medical ids
food scale
ketone meters
ketone test strips
glucose gel
kit bags

Supplies, supplies, supplies.  Diabetes is expensive, even with excellant insurance.  But we are thankful we have it.  But the US falls somewhere in the middle when it comes to access to all of this.  Some countries, like England, insulin is "free".  And access to insulin in third world countries can be awful.  

Some care choices in the US for those that have access issues can be devastating.  Everything from "stretching" insulin to not changing your insets regularly can have major consequences, not limited to whether one lives or not.   At the moment we are lucky but we still have to fight for more insulin, Dexcom supplies, or even enough test strips.  I wish insurance didn't dictate care. 

The pic above shows just a few of the supplies we are lucky to get.  In some places people don't have even this, making it almost impossible to really care for someone with T1.  I can't imagine complications happening so early because access isn't there.  I just recently listened to a Juicebox podcast Love and Charity in London by Scott Benner where he interviews Elizabeth who started T1 International.  It is fantastic.  And it brings to point that access isn't equal, and it should be. 

Monday, May 15, 2017

When you get more than you expected

Diabetes Blog Week Monday prompt:

"Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random.  What are your best tips for being prepared when the unexpected happens?  Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one's, life that you never could have expected?  (Thank you, Heather, for inspiring this topic!)"

Hmmm, there are no rulebooks for life.  And very little with diabetes makes sense.  Although when my oldest was told this past november that he has gastropareisis he did say "Well, that makes sense.  No wonder I can't prebolus and when I do I go low."  Anyway, there are always good things even in the worst.

When SugarBear was diagnosed with Type 1 I couldn't imagine the good things and then when Drago was diagnosed I realized that even in this most awful space where both of my only biological children have this disease I could find the unexpected.  Drago was diagnosed 3-3-15 and in a very short while we were seeing benefits to having a second child diagnosed.  Drago is older (by four years) than SugarBear and up until SugarBear was diagnosed with Type 1, Drago had always been the one leading the way.  For a little over a year, SugarBear had something that set him apart, made him different.  Then it was Drago's turn.  In many ways it hurt more because we knew but it was also easier because we knew.  But what was an unexpected surprise was the benefits for SugarBear.  Drago got a Dexcom within a short period of time and all of a sudden SugarBear thought that would be okay.  When Drago got his pump, SugarBear was intrigued and now he too is pumping.  They encourage each other.  They know.  Another benefit before pumping if one boy forgot his insulin pen there was always backup (even at a full day at the amusement park after a JDRF walk).  Extra supplies another sort of benefit.  When we run low on insulin  (maybe because of insurance snafus which I would say are unexpected but never are) for one we still have insulin because we have a second person in the house with Type 1.

But how has diabetes brought unexpected good into my life?  I'd say the biggest blessing has been the people we have met on this journey through JDRF as well as just connecting because "we know".  I've met people with Type 1 in my community and online, at JDRF summits and because we connect on something that many just can't comprehend.  I've gotten even better at computations and have grown fond of numbers.  I've gotten a new appreciation for life and a perspective that allows me to keep going.  Type 1 colors everything in every color.  I've grown because of what our family is going through.  I've found the unexpected because the unexpected found me.

Thursday, January 26, 2017


You know how it feels when you have a tiny itty bitty pebble inside your shoe?  You can't take the shoe off yet so as you walk you squish your foot around hoping to move that annoying piece away from the most delicate parts of your foot but it keeps moving anyway.  It might cause some bruising and maybe even a cut or blister that could lead to infection.  It always causes some sharp pain here and there and definitely is distracting.  But what a relief it is when you finally get to take your shoe off and remove the tiniest sedimentary fragment you've ever seen.  It might even make you think of the Princess and the Pea.  Maybe you'll admonish yourself for being so sensitive.  Maybe you won't even give it a second thought.  We'd like to remove the pebble from our shoes, please.  The longer it moves around in there the more likely it is to cause issues.  That is diabetes, Type 1 and Type 2.  And we need a cure.

Autoimmune:  your own body decides to attack itself but it's not like a dog chasing his tail, real damage happens.  Organs no longer have the ability to function the way they are supposed to.  Both boys lost their beta cells in their pancreas, the ones that produced insulin.  (Type 1 Diabetes)  Both boys are losing pigment in their skin. (Vitiligo)   Drago has also been diagnosed with G.E.R.D. (Gastroesophageal reflux disease) and Gastropareisis (delayed emptying of the stomach).  And Sugar Bear's thyroid has been under attack for a year from his own body (Hashimoto's) and has just lost the war (hypothyroidism).  Today at our endo appointment we found out that his TSH level was 16!  (Normal is around 3).  Today he'll start taking more medicine he'll have to take for the rest of his life. I got tears in my eyes but my Sugar Bear said "I was just wondering when I was going to have to start taking medicine for that.  At least it's not a needle. I can just make it a habit."  A lifetime.  A pebble.

Looking at my posts last year, I noticed that my last in October was just a sort of summation.  It really didn't say much.  I have so little time anymore.  The end of October had us visiting an art museum to see a Van Gogh exhibit with my Mom while my husband was in New York for his Uncle's funeral.  And it was also Halloween.  We didn't go Trick or Treating for the very first time this year.  Sugar Bear decided he wanted to hand out candy instead.  My boys are growing up so fast!  A blink and they are both young men.

In November I had to give CPR to a neighbor that unfortunately didn't make it.  It threw my world into a bit of a spin.  I still went to the JDRF summit but was in a state of shock, it wasn't the refuel it usually is and that I needed.  We had a very quiet Thanksgiving at home.  Drago had decided that Thanksgiving is just too many carbs and makes him feel awful.  We also had another EGD done on him that showed GERD is still an issue and added Gastropareisis to his growing lists of diagnoses.  Stomach issue and diabetes are not friends, it makes everything even more unpredictable.

And December had me at the JDRF awards as well as having a quiet holiday at home.  We like quiet. It lets us relax as much as we can.

This month has had us doing some new things.  Sugar Bear has started on the Omnipod pump, just in time for his 12th birthday!   He has only been at it for a little less than two weeks but he loves it.  He has been amazing with it.  Even wearing it on his legs and belly.  Every day he impresses me.

The company I work for had our employee party this month and for the very first time since diagnosis (3 years) someone besides family (hubby's parents or my Mom) or diabetes camp had the boys over so we could go out without too much worry.  It was so freeing!  Every once in awhile you forget about that pebble and it almost reminds you of how it would feel to take the shoe off.

So back to the endo appointment today.  We love our endocrinologist.  We love our nurse.  We have some work to do with Sugar Bear, his A1c is the highest it has been since diagnosis, of course he's been sick with strep recently, but still.  Drago's A1c is still fantastic.  Both boys have areas to improve, who doesn't.  And we were almost out of the appointment when our Doctor got the thyroid test results.  I don't know why it took my breath away.  It's not like I didn't know it was coming or that we can't handle it.  I think it's like that pebble, it hit a soft spot.  Another precious organ lost the battle.