Did I Matter.....

I just wonder sometimes.  Did I matter to my family?  Was I 'non diabetic' ENOUGH??  Did I do enough to make up for the fact that my sister has T1??

I wish I didn't worry about these thing.....

Fearing the Worst....

I was thinking about something the other day and it hit me that I have been living under false, or dated(?) information.  Once my sister's diagnosis set in and we began to live with it as a family, there was an unsaid reality that existed....That this illness was chronic and she would die.  I realized this morning that that fear of her mortality has been with me all my life.  As a kid I was so scared of it I couldn't even talk about it.  I remember relatives shaking their heads and saying "oh your poor sister" and then implying that her life expectancy wasn't that long.  Oh man, that used to scare me.  As a kid, I didn't know what "not that long" meant, but, I just knew it was "there" and it was another reason why it was hard for me to be heard because how do you compete with that??

As an adult, in the back of my mind there was always this mythical clock ticking on her life.  Over the years I have woke up in a cold sweat so many nights, panicked that I haven't done "enough" for her, because I still believed there was some "timeline" out there.  I have also spent most of my life believing in my mind that its only a matter of time before i would need to donate a kidney to her.  Its EVERY PART OF WHO I AM.  I have realized!!  As a kid i FEARED her death and because of the lack of education on the disease back then, my fears were often validated by uninformed relatives.  As an adult.....I have feared it and believed that's AGAIN why my life issues will never be able to compete with that.

BUT, now let's talk about reality!!!  My sister is REALLY HEALTHY!  Yes, this is me saying this.  My sister isn't walking around on her death bed like I have been conditioned to think since childhood.  She has a full life, and there is absolutely no reason she couldn't outlive me.  So, what's changed??  I think knowledge about the disease since it was presented to ME in 1976 has certainly changed.  I think my sister is amazing and takes such good care of herself that its no where NEAR the "worst case" scenario that I thought as a kid.  And, I have grown up and maybe am able to get some perspective on it.  

What I am trying to learn to do is separate my lingering childhood fears and conditioning about all of this from facts!  Its just that sometimes, it takes me a while to do that, and then its like being hit over the head!

Its time to let go of the worst case, gloom and doom scenarios drilled in to my head as a kid.......My sister is not going anywhere....

Even the simple things get affected.....

Last night, my husband was out of town, and I did something I don't think I haver ever done before.  I ordered a pizza to be delivered.  And I was home alone.  And we all know, you can't really get a "slice" of pizza Delivered.  So, I ordered a WHOLE pizza. And did I mention, I was home ALONE.   Of course I added a "side salad" so that I wouldn't look like such a junkfood overeater to the girl i was giving my order to!

Then, as I waited for the pizza, I had all of these old ways of thinking that have been ingrained into my head as a child.  I started to scold myself for the amount of food I ordered.  I felt like I needed to call my mother and say OK OK, YES, I understand i am exceeding my carb limits and probably every other limit out there as well for the day!  Then I had to have an arguement with myself as to how I must have lost total self control if I needed to have this pizza.

So, a simple pizza becomes an internal struggle for me.  And don't you just know, at some point in the thought process I would have to scold myself for being so selfish as to eat such a frivolous meal and such a frivolous time knowing that my T1 sister couldn't.

I can see my mother standing above me saying "B, you are just eating carbs for dinner?"  Last I checked i am 44 and can eat what I want!

I will say though, when the warm, cheesey pizza was finally delivered, it was worth all my self criticism, cause now I know that I come by them honestly.

How Do I Explain...

So, this past Sunday I was getting my hair cut and colored by the same girl that I have been going to for over a year.  For some reason on this day, we were talking about how much we both love dogs and so I decided to mention that my sister has a service dog.  Of course, the same thing always happens when I tell that to someone.  They say "oh wow, is your sister blind".  To which I have to say "no, my sister has Type 1 Diabetes and she has a service dog to alert her when her blood sugar is out of range and she needs to take action like testing or eating.

But, of course after I give this explanation, I can always tell that it went right over the person's head and they didn't really hear me, and so I then feel the need to push ahead with more "info".  My stylist asks me when my sister was diagnosed and I said when she was 6.  To which my stylist responded "wow, that's so young...i didn't know people got diabetes that young.  She went on to tell me that her 65 year old grandma is diabetic and she has an old uncle that is as well.

Well, anyone who knows me, knows that I can't let that go.  So, of course i had to commence "operation  explain the difference between Type 1 and Type 2 Diabetes".  My poor student stares at me wondering how they got themselves into this!  I just can't help it, It MATTERS to me that people KNOW the difference between 1 and 2.  Is it only me that cares??  I don't know, it just bothers me.

Ok, then, my poor stylist continues with her lack of understanding and says "oh, so, I'll bet your sister is really sad cause she can't eat sugar".

So, there I sat for a split second....sigh......

Trying to decide if I go further and explain to her the complexities of Type 1.  How insulin relates to food, and that the understanding of that relationship has evolved and become more sophisticated.  So that NO, its not all about just not being able to eat sugar.  And then do I go further and talk about how my sister is allergic to insulin and has to mix it with steroids before injecting?   But, by now, I caught the glazed over look in my stylists eyes and decided to leave it for another time.

I DO believe in educating people one at a time, that's for sure, but that day think I did enough.

Just my little pet peeve....making sure the difference between the "types" are understood.

JDRF...

I Listened to the JDRF live broadcast today about the artificial pancreas and the FDA.  Honestly, its seems amazingly frustrating to listen to all the ideas that are out there, but are all just "in the pipe".  I wish really cool ideas could get to market faster. 

It was interesting to read the live comments stream by as people were listening to the presentation.  "Interesting" because it seemed to sum up what I (as a NON type 1, but an interested, affected, compassionate party) have thought.  Here were two of the comments that reflected a lot of listeners:  "We Type 1's need to get more organized and start thinking about employing more radical techniques", and "We need to get more organized and more Coordinated". 

You know, I watch commercials for the 3 day walk for breast cancer.  I have seen the masses rally to find cures for HIV and other diseases.  I have been asked to participate in SUCH a variety of charity fundraising causes in my life, yet NEVER one for JDRF unless I initiated it.  It just doesn't seem as common.

Should I be doing something?? 

It is interesting how this has made charities "annoy" me.  When I see someone raising money for any other cause other than Type 1, I get all tense inside.  It makes me feel angry and guilty at the same time.  I am angry that its money going to another cause and not type 1 (isn't that terrible??) and feel guilty because I think I should be doing more.

And I am only a bystander.....so, I hope I haven't offended....

Sigh...

Well, I spent the weekend in the hospital.  Honestly, i have had lots of symptoms lately that just don't seem to be "obvious" for the doctors to understand.  The latest diagnosis is Sjogren's Syndrome.  I had never heard of it until my doctor told me I had it and I immediately ran home and googled it.  I learned its an autoimmune disease.  Hmmm....would it make sense that I have an autoimmune disease if my sister is type 1?  Does that mean auto immune diseases run in the "family"?  Just questions I have.

Anyway, along with the unexplained symptoms and pain that I have been having lately, I wound up in the ER this weekend.  They "think" it could be a kidney stone...but, they couldn't find it on the xray, so can't confirm.  I have had one before, so...I am pretty sure I know that's what it was.  But, I also have a headache that is KILLING me that they don't seem to be able to get under control.

Just a strange weekend.  A weekend full of symptoms that hurt, and doctors that can't diagnose.  When there is no diagnosis, I start to think what I am feeling is not "real".

This is sort of a situation I wouldn't share much with my family.  I have sort of learned over the years that nothing competes with type 1.  And I have also realized that I don't want to anyway....

I think sometimes when I talk about MY health issues to my parents, they sigh and want to just pat me on the head and tell me to run along.  I think they have had their "fill" of the illness called Type 1, and there is no room for me (and, that is just an honest assessment, not trying to sound like a martyr).

BUT, today was a good day.  Today, I finally felt a little better.  Today I bought a book on Sjogren's and am trying to read all about it.  ALTHOUGH, honestly, since there isn't a full proof way to diagnose it, how do I know for SURE that I should grab on to this and "go" with it?

Sigh......

Motivation....

A few years ago i trained for and ran the Chicago Marathon.  And for any one who has ever ran a marathon, you know there is a point (usually between mile 18-22) where you realize you either will or won't be able to continue running, and may have to start walking.  Its a decision that is SO mental and requires so much inner strength.

I thank my sister for being the source of my inner strength at my marathons.  I think about "tweets" or "blogs" of hers that I have read that discuss the honest, real, day to day pains in the ASS that go along with being a T1.  Or I think about how we all used to go trick or treating at halloween and she had to give all her candy to my brother and I and how unfair that is for a little kid.  And then I "decide" that I can keep going if she can deal with all of that.

My diabetic family has taught me that if they can do it, I can do it........

The other day, a friend of mine read my T1 sister's blog and he said to me "wow, she really keeps her A1C's TIGHT, impressive."  And I felt this sense of pride for my sister!!  Like, YEAH,,,that's MY sister!!  She makes me feel happy and motivated, because that is something that SHE did!!

So, just fyi, my sissy....I am proud of you!  Always.

Games....

There is this little mind game I like to play with myself every so often.  I like to call it "Who has it worse".  I almost NEVER win this game.  I feel a bit exposed admitting this thought process of mine, but here goes...

Here is the objective of the game (as if its not obvious from the name..lol):  Determine what I am feeling (physically or mentally) and then compare it to other members in my family in an effort to see who has it worse. 

Ok, so here is an example.  There have been days when I am writing this blog that I think "sure B, you have these odd, lingering effects from growing up in a diabetic household, but you are not THE diabetic, so you lose, your feelings are not worthy.".  Or, when I think about the enormous responsibility it was to be the oldest child and have to babysit my T1 sister, I lose again, because i say "well, B, think about what your mother had to go through having ALL the responsibility".  It can play out in other ways too.  If I am sick.  Two years ago I had to have surgery to remove a kidney stone (and i was SUPER scared to have it done).  And in my mind, for a second I thought "oh, ok, do I win in my family on this one"....but, ultimately I know its not "enough" to ever compete with a lifelong, chronic illness like type 1 (and obviously, I don't want to......this is clearly a mental exercise....)

Its a weird thing to do, trust me, I know.  To always feel like I am not heard.  Or not 'enough'.  I mean, in the end, how can you compare ANY short term illness to T1? 

And then, I feel ashamed for these thoughts, for not being grateful enough for NOT having T1.

Sigh.......did I mention the "lingering effects of growing up in a T1 household?.......