The Right Fit

I had my 3 month follow up with my new Endo on Monday.  This was the 3rd visit since changing over to his clinic.  The first two visits were great, but I was very nervous about this one.  After taking my 6.8 A1C down to 6.6 last time, I knew this one was going to be moving in the other direction.  Keeping myself sane has been a full time job for the last 3-4 months, and living with diabetes is a full time job.  Oh, and I also have a real full time job that is necessary to support myself and my family.  3 full time jobs had proven to be too much and something had to give.  That something was my diabetes care.  I still took my daily dose of Lantus, but bolusing was sporadic at best, and checking my blood sugar was pretty rare.  So I knew things were going to be up from last visit.  At my last visit I had explained to the doc that I had been feeling a funk and testing was usually only about once a day.  His response was that if a funk had me at 6.6 then he was totally OK with that.  I didn't really know how he was going to react this time.  He shared my lab results with me and, as expected, my A1C had gone up.  A little more than I had expected but not surprising.  8.1.  Not terrible really, but still disappointing since I haven't seen anything above the 7's since being moved over to insulin therapy.  I explained to him that I had been struggling with some depression and trying to get myself in line there.  You never really know how a doctor is going to respond to your test results and your excuse for increasing numbers.  But I was very very happy with his reaction.  He was so understanding.  Telling me that he understood that keeping myself healthy mentally would take priority over my diabetes care.  He was open about feeling that an 8.1 wasn't ideal, but not really that bad, especially if I was struggling in other aspects of my life.  Words can not explain how relieved I was.  I'm not sure how I would have reacted if he had chosen to chastise me or judge me for the change in my care, as could easily have been the case.  And I really don't think I have it in me to hunt for a new Endo right now.  So having him be so understanding meant the world to me.  Sometimes it takes a lot to find a doctor who is a good fit.  Someone who takes time to listen to your concerns, explain things that you are unsure of, and shows empathy for whatever your situation may be.  But I am glad to say that, at least for my diabetes care, I've found the right place.

A Mish Mash of Feels

I have been absent from posting for quite a while.  I have every intention of writing and posting something and then life happens.  This post has been floating through my head for weeks.  I've had a rough go of it mentally for a good stretch now, I know I am sounding like a broken record because it seems like almost every post has that sentiment lately.  I've been unable to make any DSMA chats recently due to a change in my work schedule, and the only one I have attended in the past 2 months I actually left early because I wasn't feeling up to talking T1D that day.  I do usually browse through a lot of the questions and answers though.  A little while back there was some talk around losing the feel of community that led to another #Dblogcheck day.  Which I had every intention of participating in but...well, see above.  That has had me thinking about why I started my blog and where I am with that today.  Like so many others I started blogging when I came across Six Until Me, which led me to several others.  I didn't really find the DOC until later and then I started getting active on Twitter, which I had never done before.  So, I decided to start up my blog as an outlet for the things I was feeling but didn't really talk about.  The Pretty Lady in My Life can definitely tell you how hard it is to actually get me to talk about what is going on in my head.  Starting out I really liked the anonymity of it.  Only one person in my real life knew about the blog.  Even when I attended a retreat full of Adult T1s I didn't tell anyone about my blog.  When I found the DOC and started making connections it was good to see other people out there who "get it".  Getting a comment on a blog post, few as they may be, made that feeling even better.  I started to be OK with people knowing about the blog and reading some of my more personal thoughts.  After the retreat a couple of the organizers let me know they had found it and that they really liked it.  As I got more connected with the DOC and saw that I wasn't the only one who struggled with emotional side of the disease.  I had warmed up to the idea of sharing my own struggles, even though people who know me might see them.  But, eventually it became a place where I was sharing things with the online world that I wasn't sharing with people close to me, and that is a problem.  I have found myself feeling pretty vulnerable and longing for some of the anonymity back.  Questioning if I should continue blogging.  All the people in the DOC are so great and have made a huge difference for the way I handle my life with T1D.  There is no question that when I take part in DSMA and DCDE that I feel better about my diabetes and I take better care of it.  However nothing takes the place of a real live person, someone you can call or text when the going gets rough.  A person you can grab a quick bite or drink with and know that they get how frustrating it is to decide exactly what you're going to eat or drink beforehand and if you change your mind you have to bolus again.  It's small thing but one of the things that bugs me the most.  I know a few people in my local area with Type 1 diabetes, a couple even close to my age, but none that I feel close enough to or that I have enough in common besides the big D to really have a friendship with.  I do not have an easy time meeting or getting close to new people as it is.  I'm pretty introverted and tend to fail when it comes to keeping in touch regularly.  That makes maintaining friendships difficult.  So being able to find someone with T1D, that I feel could be a friend, making the effort to actually form that friendship, and maintain seems like a daunting task.  So I wonder if taking some time away from the internet and forcing myself to find and cultivate that kind of friendship might be a good idea.  Or will it just leave me not interacting with any T1 peers at all?  And where does blogging fit into it all?  I am struggling with feeling like what I post really matters, and I hate myself for thinking that it needs to, because ultimately I started this blog for the purpose of helping to deal with my own feelings about living with Type 1.  I guess I need to get back to that.  No worries about page views (not that I've ever worried too much about that), comments, frequency of posts, or how my posts effect or make sense to anyone else.  I need to write for my sake and if it happens to help someone else out along their journey, well then I guess that's just a bonus.

The great divide

A friend shared this article about a school in Tennessee that was refusing to allow a boy to bring his Diabetic Alert Dog to school with him on Facebook a few days ago.  The school went as far as to say of the child had was blind or had seizures they would allow it, but not for diabetes.  It sparked a HUGE debate (and I use the term loosely because mostly it became a teenage name calling session.  There was obviously some previous tension between these folks).  My first instinct is to side with the family that owns the dog because, legally, a service dog should be allowed to go anywhere it's owner goes, regardless of what condition that service dog is assisting with.  My biggest problem with then issue is that they are basically ranking diseases by seriousness by the treatment they will allow.  The post sparked a HUGE debate (and I use the term loosely because mostly it became a teenage name calling session.  There was obviously some previous tension between these folks).  I was surprised by how many people thought it was OK that the school was not going to let the dog into the school.  I'm all for everyone having their own opinion and voicing but what bothered me was the split between the group over whether DADs are needed by some people, when and where they are needed, and the judgement on what is the correct form of treatment for one persons diabetes.  And the fact that some people believe that because diabetes is easy for them that the same is true for everyone living with it.  Completely discounting the fact that some people struggle with the disease.  You can see some of the comments below:

"I can't help but find it ridiculous to sue over something like this. How many diabetics do fine without a dog? I'd be willing to bet there are kids at this very school who have diabetes and don't have a dog."

"yes people do fine without dogs but I know my service dog has saved me from countless seizures and complications."

"I get it, I love dogs too and if I had a dog and an excuse to bring it around I might use it too... That being said, if your dog is preventing countless complications I'm curious what they were and exactly how the dog prevented them. I'm also curious how well you take care of yourself if you're having countless near seizures. That or I question your honesty. 

Sure, service dogs might help people with PTSD, seizures, and diabetes, but if that's your argument then why shouldn't everyone be allowed to bring their dog everywhere? My wife would be in a much better mood with a dog around, so it could really help her. 

Bottom line, in sticking with the original post, this kid doesn't need his dog in class and the other kids aren't going to learn as well when distracted by a dog. And the dog has to eat, and drink, and go to the bathroom, and on, and on. 

Maybe we just handle diabetes differently, but it's really not that bad. It's a constant minor annoyance and doesn't mean I need a bunch of special help or concessions made"

"And I am sure people with PTSD or seizures can do fine without a service dog also but service dogs seriously help them as well."

"Why survive when you can live  ..."

"If you remotely take care of yourself, diabetes isn't a big deal. And you wouldn't need a dog. You know what else can let you know your blood sugars are low? A glucose monitor ..."  (Clearly this person has not dealt the hypo unawareness)

"I do not have a pump or a dog or a CGM and I haven't had a seizure. I have also had diabetes since age 11 (12 years). 
I'm sure there are legal grounds to sue, but is it necessary? Would it better the community? Would it inspire people to promote diabetes awareness and research? Or would it make us look like a bunch of ungrateful jerks? Just because someone CAN sue, doesn't mean they should."

"You're not helping. You're spreading this perspective that diabetes limits you and talking about how you have a disability. I reach WAY fewer people than you do since I'm not on the news, but I spread the perspective that diabetes is not a big deal and doesn't hold me back in any way. All the people I've met through fighting and through jiu jitsu would be so confused to see the way you talk about diabetes when they see me in the gym several times each week with nothing more than a bag of skittles just in case."

"Main point ... Some people use diabetes as a crutch, some people take shots and deal with it ... It is what it is" (Not gonna lie, that stings more than a shot of Lantus)

You get the gist.  From there it deteriorated into representing "the rez" and not letting mutts into my casino unless they can bet.  Most of the negativity came from 3 people with mostly just one person (not the original poster even) defending their view.  At one point someone pointed out the gender split, mostly female defending the side of the dog owner and males on the opposite.  I considered chiming in to disregard that split but thought better of it because of where the conversation had headed.

And now my point (yes there is one, it just took a long time to get to it).  This is a small sample size but it seems to me that it represents overall D community very well.  There are so many differing opinions on what this disease entails for a person,  What it is and what it isn't.  Is it just a disease, or is it a disability.  Some people find it easy to live with and don't struggle and some of those people (certainly not all) discount the feelings of those of us who do struggle with comments about how easy it is and if you just take care of yourself then diabetes is no problem.  As I read through the thread and fought the urge to go off I thought about the disparity between viewpoints there and in our overall community.  And it is no wonder to me that our advocacy efforts struggle and do not reach the heights of some others.  If we can't agree on what treatment is acceptable for others within our own community how can we expect anyone else to get on board?  If we have some people putting out there that diabetes is so easy and if you struggle then you're just not taking care of yourself while others struggle just to check their blood sugar once a day, how can we be surprised that the rest of the world doesn't understand while it's a big deal?  You don't see people with cancer arguing over whether someone is in the right or wrong for choosing one treatment over another (or maybe you do, I'm not really plugged into that).  You don't see the cancer community trying to decide what type is worse or perpetuating stereotypes about other kinds of cancer.  We fight among ourselves over things small and large and then we are surprised that sometimes it hard to others to buy into what we're doing.  I don't what the fix for this is, but I definitely feel that it has to change if we are going to get beyond where we are now.

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.