Monday, May 28, 2018

Held Hostage by the Uncontrollable

Numbers, numbers, numbers.  With three they have been anywhere from low to high whenever we check.  Haven't really had all three in range at the same time.  Each is so different.  Have you ever juggled?  That is all I seem to do now but I never learned how.  When our second was diagnosed there wasn't education on how to handle one high and one low at the same time.  We just muddled our way through.  And now...three.  And I feel like I'm failing all three of them.  My brain was full with just one and now I can't seem to keep it together.  And all I really want to do is sleep.  I think I'm at the boiling point.  You know, put a live frog in a pot of water and slowly bring to a boil and he won't jump out.  If you already had a boiling pot of water and put him in he'd jump out immediately.  Acute crisis versus chronic.  If someone is severely low (has happened in the last week) I can feel the adrenaline push me into overdrive. I react.  I have to.  No choice.   Fear sucks.  Anxiety sucks.  Depression sucks.  Diabetes sucks.  I hate middle of the night 3am pump changes and/or insulin shots.  I despise trying to navigate insurance.  And the stress that comes when we can't get more insulin "just yet" cause it's not time or insurance won't approve what the endo prescribed.  Ugggh.  Internally I am constantly, silently screaming.  So many hoops.  How do you live a "normal" life with this crap?  Yes, I work.  I volunteer.  But friends seem to have disappeared, and it's just us in the middle of the never ending storm.  Held hostage by the uncontrollable.

And I know it's not just us.  I have a friend who was on his last 30units of his insulin and he couldn't get more...his endo wouldn't write the script because he hadn't been in recently.   The doc wouldn't write a script for medicine that keeps this person alive until he made an office visit.  Thirty units doesn't even last a day.  Let that sink in for a minute.  Or google Kevin Houdeshell.  This is real life here.  Life and death.  And choices.

SugarBear seems to like to run his BG a bit higher.  I think he is afraid of lows.  Drago doesn't like to check his.  I think he doesn't want to have the responsibility of the choice a number will dictate.  And Cro wrangles with going out and having to publicly take care of his disease.  He doesn't want to be judged.  I'm tethered to these boats but they are not mine.  These are just my thoughts and perceptions.  Everyone has there own perspective.  We're all in the storm.  My heart belongs to my family and our own boats but I don't have all their struggles.  I can only surmise their challenges.  And I get reminded often that I don't truly know how they feel.  I don't have Type 1.

Out here it doesn't have to be lonely.  We can gather all our boats together and face the tumult.  We can work towards that normalcy but pencil things in because you never know when a wave will crash over you.  But you have to stay afloat.  Together.






Saturday, April 7, 2018

Life is Worth It

December 28th, 2013....March 3rd, 2015.....April 5th, 2018
13.7....7.7....12.4

A child...a teenager...an adult.

In severe DKA....caught early....misdiagnosed as Type 2.

Type 1 doesn't care.

Whether it is a sudden onset or a slow one, inevitably the pancreas won't work right and artificial insulin will be necessary.

My husband was originally diagnosed as Type 2 in 2011.  He struggled to have good BG readings with a constant change in the different kinds of pills he was taking.  He watched his diet.  Exercise was difficult but he did his best.  No one ever checked his autoantibodies...not once.  I mean he was older and overweight so people made assumptions.  All of his other diseases are autoimmune.  After our youngest was diagnosed T1 I started campaigning that he should look into checking whether he was as well.  Our family doc was pretty clueless about LADA. Latent autoimmune diabetes of adults.  Then older son was diagnosed with T1.  But still no one checked.  My husband started having some pretty serious issues, swelling of extremities, neuropathy in his feet, vision issues, and more pill prescriptions.  He also was more and more susceptible to long lasting infections.  Finally he talked with his doc about seeing a specialist and getting the testing done.  She made an appointment for him to see an internal specialist and they drew labs.  The labs never came back!  No clue what happened to those but he went to the specialist on March 22nd, had more labs drawn on the 23rd, and started insulin the evening of the 23rd.  He started on what is called a sliding scale and is so outdated.  He struggled to bring numbers below 200, had high ketones that took days to clear, issues with doing shots....a miserable experience.  His new doc was aware we have two children with Type 1.  I made numerous calls talking to them as well.  A little over a week ago we finally got him switched to a carb to insulin ratio which works sooooo much better.  We are still making adjustments but he is starting to feel better.  The swelling has even gone down and his feet feel a little better.  And we have had lower numbers!  This isn't easy by any means but especially for someone who is permanently disabled with mobility issues.  One of the struggles is he can't do some of his own shots...so I help.  We did get pens after a couple of days as syringes and vials were not going to work for him at all.  Pens are better.  His doc has already said that if his labs came back Type 1 (which the specialists all felt that it would) she would like to have him on a  Dexcom.  So Thursday hubby called the office to see what his labs were.  The nurse on the phone was awful...."everything looks fine except your A1c is 12.4...you really need to get that down...we like to see a lower A1c....you need to work on that..,that is really high!"  Of course it is high, no insulin will do that to you.  Finally got her to inform on the specific labs...oh your GAD is high. And there it is...autoimmune diabetes.  So here we are...three Type 1s.  Three on insulin.  Numbers, numbers, numbers.....but we got this.  And life is worth it.

Saturday, March 3, 2018

Diaversary

What Keeps Us Going




Four years and two months for MonkeyMan and today marks exactly three years for Drago.  Thousands upon thousands of finger pokes.  Lots of shots.  So many pump changes and cgm changes (hey, those things have needles too).  Regularly interrupted sleep.  December 2017 and January marked some firsts..,.the first time I had to go in late to work because MonkeyMan dropped super low and hubby was fast asleep.  And our very first ER trip in January for MonkeyMan due to the stomach bug where he got some fluids and IV zofran and managed to somehow not end up in DKA.  Stomach bugs and T1 are quite challenging.  But MonkeyMan took it all in stride with such an amazing attitude.  He had doctors and nurses in the trauma room laughing with his "I'd rather take another needle than hear another Dad joke." "Yay, stomach bug." And "Where do you get one of these beds?" comments.  Life is both entertaining and crazy with teens with T1.

So here I am today, thinking about the last three years with two T1s.  We had our endocrinologist appointment yesterday and it was the worst for both boys.  I think we are all a little burnt out.  The daily nonstop aspect of this disease definitely takes a toll.  We've reached a point where Drago doesn't consistently wear his CGM, where MonkeyMan would rather just eat than prebolus, where the hubby and I are tired of the beeping and the struggle.  I'd say we would all need a break but you don't really get a break with this disease.  No breaks ever. Ever.

So yeah, today, today I let myself cry.  I let myself grieve.  I kind of "took a break".  We still checked BG, bolused for food, corrected highs, treated lows, but I stayed in my PJs.  I watched TV.  I'll pick up the pieces and start again tomorrow.  I have to.

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.

Drago:
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).

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

Me:
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
tegaderm
juice boxes
medical ids
food scale
ketone meters
ketone test strips
glucose gel
zofran  
kit bags
etc...etc...etc...

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.