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.