Invisible (What you don't see)

I live with a couple of diseases that could fall into the term "invisible disease".  I take medicine for them daily, they effect my everyday life and the lives of those closest to me.  But to look at me you would probably think I'm just fine.  And I am for the most part.  Aside from a lazy pancreas and sometimes chemically out of whack brain, I'm a healthy person.  But I do live with a chronic illness that most people just don't see.  All of the things below don't necessarily apply to me but I think they apply to a lot of people who live with invisible disease.

Many people sleep soundly.  I laid wide awake with tears running down my cheeks

Many people enjoy their meal without a second thought.  I worked out the carbs in my head and the math to determine how much insulin I need

You might be tired because you were up late watching a movie,  I'm tired because I was up at 2 am treating a low blood sugar

Some people spend their money on new gadgets, nights out, and fun things, Some months I spend over $500 on supplies and appointments to keep myself alive

Lots of people get nervous over getting their flu shot. I pricked my finger 10 times today and injected insulin 6 times

You get out of bed and shower, decide what to have for breakfast.  I have an argument with myself about why it is worth it to get out of bed today.  Then I check my blood sugar, decide what to eat, and figure out how much insulin to take, fill up a syringe, and inject.

Some people get shaky with low blood sugar after not eating lunch.  I am responsible for managing my disease with a drug that, if not handled correctly, could send me into a hypoglycemic episode, or even kill me

I battle the thoughts inside my head that say I'm not good enough.

I stress about the amount of money I spend to manage my disease and if it is going to keep me from paying my families bills this month

I tell myself I'm broken

I tell myself that even though my joints hurt, my head hurts, and the last thing I want to do is get out of the bed and deal with other human beings, it is what has to be done and I shouldn't be so selfish

I tell myself that my wife and kids deserve better

I fight back tears at random moments during the day

And through it all most of the world doesn't have a clue about any of it.  Because I don't look sick and I try to put on a happy face.

Do you relate to any of the things on the list?  What other things should be on the list?

The Overlooked Demographic

During last weeks DSMA chat the topic of JDRF and their area of focus came up between a few participants.  One person in particular was very bothered by the focus of JDRF on kids and families of kids with Type 1 diabetes.  He, like me, was diagnosed after he was into adulthood and was left feeling very alone and isolated with no real support network.  I can relate 100% with how he felt, because I felt the same way.  My 'local' JDRF chapter covers Utah and Idaho and is based out of Salt Lake City, 350 miles away.  They still facilitate several events in the area and there are some people locally that keep things going with them but they are all parents of Type 1 kids, so that is where the focus is.  The 'local' ADA chapter is in Portland, Oregon, 430 miles away, and covers Oregon, Idaho, and part of Washington.  Since my diagnosis almost 4 years ago the only ADA activity I have seen in the area was the Community Walk fundraiser, which I brought to the area and organized for 2 years before moving on from it.  So I don't know what these organizations are like in other parts of the country, or what is available for adults with Type 1, but in my neck of the woods the effort is focused towards the kids and support for adults is non-existent.  I'll never forget the first diabetes related event I attended here.  It was a Christmas party put on by JDRF and Hodia, the local kids and teens camp.  I walked in not knowing anyone and got asked too many times which of my kids had diabetes.  The answer to which is neither.  I felt like I was intruding and taking part in an event that was meant for kids,  So I can relate to those feelings of isolation.  Even now, outside of the online community, I do not have much interaction with any of people with diabetes.  The few connections I have made, came from my own searching out people and volunteering with other T1D organizations.  And of all the people I've met, even the 30+ at DTreat last year, I can count on one hand how many of them were diagnosed as adults.

I'm not bitter or angry with JDRF for where they focus their efforts.  Because Type 1 was originally thought to only present in kids and it was during that time that JDRF was founded it makes sense that this would be where their primary focus is directed.  Besides, lets face it, you get a lot more support (and dollars) when cute kids are involved.  Nobody notices about the twenty-something guy that is struggling through college trying to balance school, work, and being a pancreas.  But put little Sally out there and show how her diagnosis has effected her whole family, talk about how a 3 year old has to endure multiple shots a day, or the burden the cost of supplies puts on her family.  That sells.  Cute sells.  And if that's what brings in donations that will ultimately benefit every person living with T1 then so be it.  And from what I hear JDRF has done a better job and supporting adults more recently.  And it may well be different depending on your local chapter.

I guess the point I am getting at rambling towards is that adults with Type 1 diabetes, especially those diagnosed as adults, are a sorely overlooked demographic.  I've written posts before talking about what I want to do to change that.  I would love to head up a group that can facilitate meet-ups for T1 adults.  Even better I'd like to include a mentorship program for newly diagnosed adults and their families.  If you think a diagnosis effects a family any less when it's Dad that's diagnoses instead of Junior, you are way wrong.  It's a great goal.  One I feel passionate about.  There is just one problem.  I have no idea how to get there.  I have tried getting involved with some national organizations working towards that goal but have never really gotten anywhere with it.  The closest I got was creating a group through T1DN, who has groups geared in that direction.  It was going great, I got the paperwork filed, got a lot of the materials, and then couldn't get anything else from them.  I wanted to change the name to include the entire area I live in, not just one city and they said great...but it never happened.  Then I stopped getting answers to my emails.  There was no support there for someone trying to get started.  Another dead end.  The answer seems to be building it from the ground up.  Starting with some weekly or monthly meet ups with others Type 1's and let the word spread.  Build it up from there.  And I would love to do that.  But I am such an introvert (and seemingly getting more so by the day), that just gathering a group of strangers and trying to interact and share my vision is a mind boggling thought.  On top of that my work schedule and family schedule make that difficult.  It is so hard to have an idea in your head, to have the passion burning to do something with it, but just not knowing where to go with it, where to start even.  So if any of you have been involved with something similar, I'd love to hear your ideas.

I keep learning

I had something I consider a breakthrough a few days ago.  Although I didn't see it for that at the time.  I had planned on spending my morning moving the remainder of the junk in my backyard and garage from the old house to the new one before going to work at Noon.  I got a somewhat early start, filled the back of the truck and headed back home.  Then, as I tried to get into the house through the front door, I realized I had locked myself out.  I had borrowed the truck I was using from my brother and only grabbed the keys to that truck when I left that morning, leaving my house key inside attached to my other car keys.  My next thought was "I'll just open the garage door and go in that way."  Wrong.  My garage door opener was in my car.  Which was locked, parked in front of my brother's house.  And where were the keys to that car?  You guessed it.  Inside the house I was locked out of.  After a few minutes of trying to devise a way to get in and discovering that the new house is rather hard to break into, I admitted defeat and called my wife to tell about my screw up.  I finally gave in to the fact that I would have to drive the 20 miles to get the keys from her at work.  I hadn't loaded the truck thinking I would be going more than the 1/2 mile between the two houses and definitely hadn't thought I'd be traveling on the freeway so I was a little leery about making the trip, but I really had no choice.  I had to be to work later, my clothes were in the house, and I hadn't showered.  So I made the trip to get my keys, got into the house and unloaded my everything from my first trip.  So I accomplished about half of what I had planned for the day and would be late for work.

Why is that significant?  What's the breakthrough?  I was feeling pretty bad after the whole experience.  I was upset, frustrated, and angry.  The last thing I wanted to do was go to work and interact with people.  A few months ago I would have written the day off.  I was already late for work so why go in at all?  I would have stayed home from work, been upset the rest of the day and just stewed in my depression.  But that day I took a moment, reflected on my feelings and if they were justified.  I ran a bath, soaked and relaxed for about a half an hour and let the frustration of the morning wash away.  Sure I was making myself a little more late.  But I was also taking control of my depression rather than letting it run away with my emotions and hijack the rest of my day.  It was a significant day for me because on a day when I could have let depression win, I overcame it instead.

The Lowest of Lows

I suppose you could say I've been luck in my diabetes life so far.  I have experienced my share of lows and more than my share of highs.  I've dealt with lows in the 40's and 30's because I don't often feel them before that point.  But I usually recover from them pretty quickly.  I get that shaky feeling, the rapid heartbeat and the outside my mind feeling, but I pop a few glucose tabs, down some orange juice, or eat the entire contents of the fridge and then I feel fine again after a few minutes I feel good again.  Even after making the mistake of taking my Humalog in place of my Lantus I was lucky enough to catch it in time and not go too low.  But last night I was hit with a low that left me reeling for a bit.

Before eating dinner my meter showed a blood sugar of 407, so I corrected and took my bolus for dinner.  The kids bedtime routine usually consists of multiple trips back to the bedroom for various reasons.  In the old house this was a nuisance but just required a short walk down the hall.  In the new house it requires dragging myself up and down the stairs.  As I got the kids into bed I started to feel a little shaky and after the second trip back down the stairs I could tell I was getting pretty low.  The fog of confusions started to set in, the shaking got worse, and I started to feel a little light headed.  As I searched around the kitchen for my meter I started seeing the white fuzz around my eyes (which I find kind of ironic because I had just been talking about never having passed out because of a low after my trip to the DMV the day before).  The reading on my meter revealed the lowest number I've seen.  29.  I inhaled 4 glucose tabs and laid on the couch to wait it out.  After a while I had some fruit snacks and checked again.  45.  Usually at about that point I start to feel better.  But this low was different.  It was clinging on.  I ate 4 more glucose tabs and laid back down.  The shaking feeling was hanging around.  I was freezing but sweating.  I was starting to feel nauseous.  And I was starving!  Such a mix of conflicting feelings!  The Pretty Lady was eating tortilla chips so I dug in.  I don't know what it is about post-low feasting but everything tastes so good.  I savored every salty bite and slowly started to feel like myself again.  This was a scary and unusual low for me.  It hung around for too long, ran me through a lot of weird symptoms, and left me feeling awful for the rest of the life.  And then there is the fact that I felt pretty close to losing consciousness.  The Pretty Lady and I talked about the fact that we don't have a glucagon kit in the house.  I have been avoiding it because of the cost and the fact that they expire quickly.  I haven't had a low where I felt like I was going to need it before, but after yesterdays low I'm beginning to reconsider that.

So This Is The New Year

  Figured now is a good time update life so far in 2015 and look forward to what I hope this year to bring.  Today should have been the day that we closed on our new house.  But, much like the rest of the process we hit yet another delay.  Due to someone dragging their feet on some paperwork we were able to do our final walk through today, but will not be closing until Friday morning.  So now the finals days are here.  Packing everything but the essentials, trying to decide what we need for the next 3 days and what we can live without.  I look around and feel like there should be more boxes or that we still have a lot left.  And then I look closer and realize there isn't much left to box up, just lots of furniture.  In 3 days we will be unloading into our new house and I'll be spending the remainder of my vacation making our new home look like ours and our old home look less like ours.  I'm so lucky that my wife is along for this ride because she handled all the issues like a champ and kept finding solutions when problems came up.  When I was frustrated and more likely to ignore the problem and hope it would go away she was there finding a way to make it happen.  Without her this whole thing wouldn't be happening.  Even with all the frustrations, ups, downs, roadblocks, and delays we are finally getting out of our cramped house and into our new, bigger, nicer house.  What a great way to start the new year!

  I've never been one for resolutions, or goal-making of any sort really.  But last year was a rough one and at the end of it I was exhausted.  I spent the better part of the year fighting bouts of depression and a lot of time and energy pretending like it wasn't there.  Throughout most of it I kept my diabetes in check.  I finished up with a sparkling 6.6 A1C.  But as the year dragged on the testing became less frequent and the logging became non existent.  I was actually pretty surprised that my A1C was below 7.  I've gotten to the point where I rarely take my bolus insulin.  I count my carbs, calculate my dose, and consciously think about the fact that I need to take insulin.  And then I just don't.  I even think about how bad it is that I'm not taking it.  I think about the complications that come from it and the crappy feeling of being high.  But there is some sort of block there.  And then there are the times that I think I would actually take it, but I forgot it.  I have been racking my brain trying to think of what is going on and what I do to change it.  I think it's part burnout, part depression, and part sheer exhaustion from the holidays and the house fiasco.  So between the two D's I thought this year might be a good one to set something for myself to work towards.  It's a small list but it's what I need.

1.  Test, log, and react to blood sugars on a consistent basis.  I'm starting with testing morning and night and working towards to meal times and post meal periodically.  And then there is taking bolus doses of insulin.  Today I missed breakfast because it was on the run but got lunch, dinner, and an afternoon correction.  Sounds small, but it was a huge victory for me.  Also, a big help for this has been Dealing With Diabetes Burnout by Ginger Vieira.  I got it from my Mother in Law for Christmas and I'm only a few chapters in but I really like it so far.

2.  Keep looking forward.  I am feeling much better than I was several months ago.  Thanks to a good hard look at myself and my behavior and a great psychologist.  But depression is unpredictable.  And progress can be slow sometimes.  It seems like it's two steps forward, one step back.  I'm not where I was when I felt like I was just inches from a breakdown, but I feel a little off and I have slipped from where I was when I stopped going to therapy.  It's small things like the exhaustion creeping in when I can't get out of bed or keep my eyes open.  So it's time to refocus again and make sure I'm paying attention to where my mood is.

3.  Get promoted.  This kind of goes hand in hand with the last one.  I feel stagnant where I am in my career and that doesn't help me to keep out of the black hole that is depression.  There aren't a lot of options for promotion in the job I have but I am ready to work towards the one that is there.  I don't want to be where I am forever, but following my dreams requires going back to school and in the mean time I just as well take what I can get and make some more money in the meantime.

4.  And that brings us to this... Go back to school.  I've mulled the idea over for a long time.  I am so over the demands of retail and the moments with my family I miss out on because of it.  And over the past year as I dealt with my issues, met some new people, and experienced the power of giving back and the 'me too' factor I have found a fire inside.  I don't know exactly what I want to do but I know it involves non profit work and hopefully the diabetes realm.  I want to help people who are diagnosed later in life or just living with diabetes as adults connect and find support from others just like them.  So if all goes as planned I'll be enrolling in school this fall.

So there it is.  What I want to accomplish in 2015.  I am counting on the few readers I have to keep me on track.

Funk

Tuesday marked my most recent endo appointment (only the second with an endo, ever, as I was seeing PC doctors previously).  All in all it was a great appointment.  I am happy with the care I am receiving from the doctor thus far and the office great.  The staff is friendly and calls with reminders of my upcoming appointments and reminders to get labs done the week before.  Dr. Ennis listens to any questions I have, gives me an opportunity to say what I need to say, and always follows up on things we had talked about at previous appointments.  My blood pressure was a little elevated but not enough to cause any alarm just yet.  We followed up on my questions about pumping from the last appointment but it is on the back burner for a while because my insurance just plain sucks when it comes to anything more than the standard care stuff (which also sucks at, but a little bit less).  I did ask to switch my scripts from pens to vials because it is a little cheaper if less convenient (a refer to previous sentence re: insurance).  In the end we decided to stay the course I'm on but try to test a little more often since I'm not able to CGM until I can get a new transmitter. All of my labs came back looking good and my A1c stayed level at 6.6, down .1 from 3 months ago.  That's the part that surprised me the most because of this funk that seem to be and just can't pull myself out of.  Emotionally I'm feeling much better but I still can't seem to get a grip on the everyday stuff.  I need to test more often.  There are times when I know that I'm high and I know why.  I know that I should test and treat but I don't.  I'll grab a snack or have lunch, consciously think about how many carbs are in it, how much insulin is needed to cover, and that's where it stops.  A couple more very easy steps is all that's needed from there.  Test, pull out my pen, put on a needle if needed and inject.  So simple in theory, yet so hard to bring myself to do it.  Sometimes it's just not convenient. I'm at work, wearing a long sleeve shirt that is tucked in and getting to an injection site is a bit of a pain.  Hardly a legit excuse but it still gets used.  Other times I just can't take another injection.  Usually after one or two particularly painful injections previously.  I've been doing this for almost 3 years and the needles and injections still get to me sometimes.  It's such a mental game that never ends.  It seems like it should be so simple to just pull out that pen and inject, and at times it is, but all too often there is this mental block.  I go through the whole routine and there is something there that keeps me from finishing the process.  I think it starts with baby steps.  Getting back into the habit of testing at least 4 times a day.  Getting back to having a routine until counting carbs, dialing a dose, and injecting is one seamless motion again.  Hopefully while I'm on vacation next month and into the new house I can take some time to address the things that need addressing.  Or maybe I'm not missing things as much as I think I am?  A 6.6 A1c is good with me but I suspect the funk just wasn't going on long enough beforehand to have a big effect, and then there are those nagging lows that tend to throw off the average.  Anyone have any pointers on how to defunkify?  On the bright side someone was reading my mind and got me this for Christmas.

A near miss

People living with Type 1 diabetes take their lives into their own hands on a daily basis.  We are armed with a very powerful tool in managing our disease, and a small misstep can have disastrous consequences.  I hear and read a lot about how dangerous insulin can be and how small mistakes can lead to big problems but I never really understood it.  I knew that it was definitely possible to take too much insulin and end up in a really scary situation.  And I know that low blood sugars are also very dangerous.  I've blood sugars register as low as 32 on my meter and felt low symptoms (unfortunately I usually don't feel those symptoms until I'm into the 40's), but I have never felt as though my life was in danger.  And then yesterday I made a very stupid mistake.  I missed my Lantus dose on Monday night and kept forgetting in Tuesday morning as well.  I dropped my daughter off at day care and came back home to get ready for work.  I was getting ready and remembered again that I still had not taken my Lantus dose so I went to the kitchen to take it.  I keep my Lantus pen next to the coffee maker and usually my Humalog stays in my case that I take with me.  I was pre-occupied and grabbed the only pen that was sitting there, dialed up my usual 26 unit dose and injected it.  It wasn't until realized that I didn't hear the usual clicking sound my Lantus pen makes when you depress the plunger that I had made a mistake.  Yep, I had taken 26 units of Humalog.  I stood there for a minute while the potential implications of what I had just done began to sink in.  Then I realized that I needed to do something about it before things got really bad.  I was home alone, supposed to be at work before too long but no one would take much notice or call if I wasn't there right on time, and no one was expecting me anywhere in particular during that day.  No one would be at my house for about 6 more hours.  I texted the Pretty Lady in My Life to let her know what was going.  She freaked out a little, but at least someone knew that if I didn't respond they needed to send help.  Then I checked my blood sugar.  I was already high because I forgot to bolus for breakfast so I at least wouldn't have to cover the entire 26 units, only about 18.  With some quick math I figured out that I needed to take in about 216 carbs, as fast acting carbs as I could get.  I scoured the house, found orange juice in the fridge and poured what was left into a glass.  The I looked all over the place to see what was available.  I considered glucose tabs but thats a lot of glucose tabs and the thought of chewing and swallowing 50 plus tabs made me feel sick.  I settled on Fruit Loops and measured out what I figured to be the amount that I would need to cover the remainder of the insulin.  I chugged my orange juice and checked my blood sugar, 42, and started eating my cereal, sans milk.  I checked in with my wife and checked my blood sugar every 15 minutes or so to let her know I was still alive.  I saw my numbers start to climb back into a safe range.  50, then 56, then 74, and eventually back up to 108 about an hour later.  I ended up at 67 around 3:30 before my bloodwork for next weeks endo appointment, so I made sure to keep eating and periodically checking my blood sugar the rest of the day.

In the end everything turned out OK, but the whole experience scared the shit out of me and has reminded me just how easy it is to make small mistakes that can have huge repercussions.  And very dangerous ones at that.  As people living with diabetes so much of our care is left in our own hands.  I'm fortunate to have had good doctors in my short time with diabetes.  I received good direction and on how to use insulin properly and through my own research and the help of others know how dangerous insulin can be.  But I know through my interactions with other PWD that not everyone is as fortunate.  I found out yesterday that even with good training and the knowledge of what to do and what not to do, it's easy to make mistakes.  And with a drug like insulin mistakes can be costly.  That is why we need a cure.  Because insulin is a stop gap measure that keeps us alive, but there are too many doctors out there who just throw a vial of insulin at a patient and send them on there way.  There are too many PWD who don't know what insulin on board is, what their insulin to carb ratio should be, or how dangerous it is to be off on your dosage.  We need a cure because the thing that we need to keep us alive can too easily be the thing that kills us.