April 20, 2011

Diabetes is Dumb


That's putting it mildly, but I have this aversion to swearing on the Internet so I try not to.

Diabetes is an insidious disease that kills you slowly over time.  That is the honest to God truth.  Even if you take excellent care of yourself, if you have Diabetes some complication which it causes will most likely lead to your demise.  I don't even want to list all the problems that can crop up because it is too long and depressing, but suffice it to say, Diabetes is the leading cause of blindness and kidney disease, two very terrible and permanent afflictions.

I married a man with Type 1 Diabetes and over the years have been watching it take its toll on him.  It actually started its insidiousness in Mark before I met him.  He was diagnosed at age 9 and by 25 he was legally blind, had lessening kidney function and neuropathy had begun in this feet.  Once his kidneys failed he was blessed to receive a kidney and pancreas transplant which commenced a 6 year reprieve from Diabetes.  There is a lot that goes into taking care of transplanted organs too, which can make it feel like you've traded one disease for another, but it was indeed a healthy time.  We got married and had a baby during those years.

Mark has been back on dialysis and insulin since winter of 2002, another 9 years now, and there isn't much hope for a second transplant due to antibodies in his system from the first set of organs.  The other problem is, Diabetes and dialysis have caused complications with his heart which ultimately led to his double bypass last September (after several angiograms, angioplasty and stent placements failed), and one very important thing you need in order to undergo transplant surgery is a strong heart.  So he has been listed as active and inactive on the transplant list over and over since 2003.  Each time an "abnormality" shows up on a heart stress test, he is deactivated, then after treatment and a clear heart stress test he is reactivated.

I'm pretty sure one's heart can be strong enough for surgery after bypass, but there's still the antibody issue.  Therefor, in my mind Mark will likely live this way for the rest of his life.  However, one never actually voices this to him.  He still focuses on the possibility of another transplant because it gives him hope.  I can't argue with that, nor should I try.  Taking away some one's hope is cruel.  And despite everything Mark goes through he is one of the most positive and upbeat individuals I have ever known.  It's one of the qualities that makes me love him and how he has taught me so much.

Case in point: sometimes Mark goes through phases of insulin sensitivity.  Meaning he can get low, have an insulin reaction, easily and for no apparent reason.  He seems to be in such a phase right now (which is why I started this post).  The night of my birthday this past Saturday, after a great day in Leavenworth and eating plenty of food (too much if you ask me), Mark ran to Walmart to return a movie and get me a bottle of wine and proceeded to get low while there.  I had a strong feeling something was wrong because this little errand was taking way too long.  He realized he was low himself when he stumbled and bumped into a few people.  They asked him if he was OK and he said his blood sugar was low.  Someone got him some orange juice, he drank it and was feeling better, so he got my wine (and a box of cereal because he thought it might look weird to be low and buy just wine).  But he didn't make it out the door because his sugar was still too low so someone called 911.  Paramedics/EMTs helped him and even drove he and his car home.  I'm not proud, but I was really angry for a little while, not understanding how this could've happened.  Mark tried to reach out to me but I pushed him away.  But, I didn't want the day to end on such a crappy note, so I suggested we find something funny to watch.

Mark spent yesterday afternoon hanging curtain rods in our and Cami's rooms.  At 4:30 he realized he needed to eat and he did.  Then we had dinner around 6:30.  Between 9-9:30 he was getting low again.  He said he hadn't taken a bolus of insulin with dinner because he didn't eat much carbs.  While in the kitchen trying to fix himself something to eat his sugar crashed to the point where he was totally out of it and couldn't stand up anymore.  He had made some toast so I moved it to the table hoping he'd go sit down at it to eat.  I tried to help him walk but he wouldn't let me.  I kept trying to help.  He still wouldn't let me, even though he was about to fall flat on his face.  Thankfully he manged to just slide down to the floor, but not without totally fighting it first.

Once he was safely sitting on the floor I stuck a straw in the cup of milk he had poured and tried to help him drink, but he kept leaning away from me.  I started to get scared that he was going to remain uncooperative and yelled at him to just freaking drink the damn milk already!  He then decided I needed to give him the cup so he could do it himself.  I loathe giving him a cup of liquid when he's low because he will most likely spill it, which he proceeded to do because he kept moving the cup around trying to keep it away from me even though I had backed off.  Mark is like a drunk 2 year old when his blood sugar gets so low!  He was yelling at me to let go of the cup (I had) then he spilled it and I burst into tears, crying as I sopped up milk.

Sometimes if I get upset during an insulin reaction he will hear it and it will make him think just clear enough to actually start consuming something.  He chugged what was left of the milk and I gave him the toast he had made and got him more milk, crying the whole time.  Once I knew he was getting sustenance I went to the bathroom for tissue...and to keep crying in private.  Sometimes I cry out of utter frustration with the way Mark is behaving.  And I was frustrated, but it was more than that.  I was crying so much due to fear.  Yeah it's irritating, then on the flip side, kind of funny after the fact.  But it's also very disconcerting to see Mark be completely different from his normal self....not to mention where my thoughts invariably lead me....this is hurting him....he could die if I can't help him....please God, help me make him better.

Now here's the kicker.  He's feeling a bit better and sits down at the table to just chill.  I'm sitting on the couch and keep looking over at him, asking if he's doing OK.  One time he says he's wishing something would just go his way for once.  Well this hurts my heart so I go over and comfort him.  The next thing he says is "but I'm so grateful".  Grateful?  Now?  What for?  "Because you're here", he says.

I am here.  I am 100% here with Mark, and our kids.  This is what I do, who I am.  Even as I often hate Mark's health problems, want to scream and throw things and not do it anymore, I am completely in love with my family.  How do I reconcile these conflicting emotions?  Hell, life is a massive jumble of conflicting emotions!  All I can do, all any of us can do, is focus on the good, laugh and sprinkle in plenty of other things that make us happy and fulfilled too.  Such as friends, hobbies, work, music, books, movies, great TV shows, food and wine, nature, pets, birthdays, Christmas, caramel....

Diabetes is still dumb.  Watching someone you love struggle is dumb.  Being afraid all the time is dumb.  Anything that sucks is dumb!  I wish it would all go away.

On the other hand....

"We have no right to ask when sorrow comes, `Why did this happen to me?' unless we ask the same question for every moment of happiness that comes our way."
~ Author Unknown

April 14, 2011

The Final Days of 36...


I was born on Tuesday, April 16, 1974.  I will turn 37 in 2 days.  Getting older is such a trip!

My mom and me when I was a baby. One of my favorite pictures of all time!

I'm feeling very introspective.  Happy too.  I just came through a few weeks where I wasn't sure about myself, my value and even what I'm doing with my life.  But this week I've somehow (did my angels whisper in my ear again?) gained a renewed sense of who I am and what matters to me. Oh I hate it when I don't feel content!

There's a lot that's ambiguous or vague and I can't put my finger on it.  But one thing I've noticed is a shedding of expectation.  For example, expectation of how my birthday should be.  I used to think about it in a very selfish way.  Not that it's wrong to be selfish - or rather, self-centered - on your birthday.  But it's actually not as satisfying if you really think about it.  I've learned that it's really much better to approach it with just a sense of openness to whatever it brings.  Sure, have an idea of what you want to do or would like to receive as gifts, but as far as how others respond to your birthday.....how to explain this.....

Of course I want my friends and family to remember my birthday and want to celebrate it with me.  It makes me feel special and loved and I really like feeling that.  And it would indeed hurt if nobody cared.  But I don't want anybody doing anything out of obligation because I expect it.  I used to.  For years and years I thought my birthday was my one special day each year and dammit I deserve it!  I spend the rest of the year putting others first so if I wanna take this one day, I can right?

Well.... I will always think that everyone deserves to be a little spoiled for their birthday.  But now I realize that ME, ME, ME mentality isn't  a good place to come from, for my heart to dwell.  I don't think I'm the first person to figure this out.  It seems this is a piece of wisdom we all must learn.  Now I understand that what's most important is feeling gratitude for my life and the people in it.  Everything else is cake - birthday cake!  Haha!

I asked my Washington girlfriends to get together for a dinner to commemorate my birthday and we did on Tuesday.  I told them to not worry about giving me gifts, that their presence and their smiling faces was all I needed.  And for the first time in my life I sincerely meant it!  Miracle of miracles, they were all able to come and it meant so much to me.  The 5 of us sitting around Jessica's kitchen table eating, chatting and drinking wine was perfect!

My J Ho made me curtains for my bedroom that I think are going to look perfect and I can't wait to get a couple curtain rods to put them up.  Hopefully I will be able to do that with the Target gift card my in-laws are sending.  I also told them they didn't need to worry about giving me anything (for reasons other than unselfishness), but if they insisted, I do have new curtains to hang.  I don't think J Ho is capable of not giving people gifts.  One year I just didn't have the money to send her anything so I told her she wasn't allowed to buy me anything when my birthday rolled around.  So what did she do?  She made me a little book of recipes with just her computer and some scrapbooking paper she had.  Makes me all the more grateful to have acquired the skill of knitting because even when you're low on money, yarn can be had pretty inexpensively!

Another thing I've already received is a very mushy card and check from my mom.  The words in this card are so wonderful and a real gift in themselves:

For your birthday,
I wish you the confidence
to begin this year
as you would open a gift,
certain that it holds
something special just for you.

I wish you
strong trust in yourself
and faith in the future,
the belief that you will make
the right choices
to bring you closer
to the happiness you deserve.

I wish you
friends to surround you
in the circle of their caring and love,
and people to help you
laugh at life.

Most of all,
I wish you could see
the beautiful woman I see
when I look at you -
the remarkable,
irreplaceable person
who adds so much
to so many lives !

I don't share these words to toot my own horn or say "look at how much my mom loves me!"  It's that I just so appreciate the words and I appreciate when someone tells another person how they feel.  Words are very powerful.  They say actions speak louder, and that's often true, but I think words matter too.  Reading this card made me feel so good!

For my actual birthday we are planning to take a day trip to Leavenworth, WA.  "We" being me, Mark, the kids and my dad.  This will be our first time checking out this little town in the Cascades that is modeled after a Bavarian village.  I've heard lots of cool things and it should be fun!

"Youth is a disease from which we all recover."
~ Dorothy Fulheim

April 2, 2011

Proselytizing

I need to vent about something.  Well, maybe I don't need to, but I want to!

Proselytizing really bothers me.  Religious "witnessing" kind of does too.  These 2 things have always bothered me because I've always felt that one's religious/spiritual beliefs and faith are so very personal and come from somewhere deep inside us, and that no one should think they should try to convince people to believe whatever they think is the right thing to believe.

The reason I'm bothered about it right now is that I have a couple Facebook friends who use that social network to do their witnessing, and have even gone so far as saying they pity the "unsaved".

I have zero problems with people believing what they believe.  I might not completely agree, might even think it's stupid, but I would never say so, would never make someone feel bad for what they believe (or don't believe, as the case may be).  I do believe in God.  I have always known, my whole life, that there is a God, guardian angels, Jesus, the Holy Spirit.  No one told me to believe this.  My parents didn't have me Baptized and we didn't go to church during my entire childhood.  One birthday I told my mom I wanted a necklace with a cross pendant.  She was surprised and asked me why.  I told her I didn't really know, except that I liked what it represented...ultimate love and sacrifice.  And she got me one.  This is what I'm talking about when I say faith comes from somewhere inside us.  I just know that I'm a spiritual being connected to something more.  I could get into the finer points of what I do and don't believe, or everything I'm just not sure about, but all that doesn't really matter.
 
What I have a problem with is people who feel the need to constantly throw their beliefs in other people's faces.  And I especially don't appreciate when those people act like they're better than everyone else because of what they believe.  A couple of the Facebook statuses I've seen say "there's hope for all the lost" and "how the unsaved make it thru this world is beyond me".  Excuse me??  WHO ARE YOU to pass judgements like that!?  AND, why do you think it's appropriate to spout off these things on Facebook of all places?  Facebook is great for keeping up connections with people, but it's really just a silly social networking site.  I don't think it's for trying to convert the masses.  Facebook is not a pulpit!  I understand that it's a place where we can share bits and pieces of ourselves, boast about our accomplishments and stay informed on a myriad of things.  I myself have mentioned God and asked for prayers on Facebook.  But that's where I stop.  Asking for prayers when you're struggling with something is totally benign.  The majority of people in the world do believe in the power of prayer, so you're probably not going to offend by putting that out there.
 
But to come out and say you think people are "lost" or "unsaved" because they don't believe what you do is rude and judgemental!  I remember when my friend Emily was dying some of our mutual friends were worried about where she was going after she died because she didn't accept Jesus as her personal saviour.  They actually believed that this amazing, couragous, beautiful soul could go to Hell.  That boggles my mind!  I don't believe that good people go to Hell simply because they weren't pious while alive.  That's not what the God I believe in is about.  We can't possibly know for sure what happens when we die so we simply can't say!  Some people spend way too much time worrying about the way others are living their lives, when they really should only be worrying about how to live THEIR best lives, and just loving their neighbors.  It's in the Ten Commandments, for crying out loud!
 
"I like your Christ, I do not like your Christians. Your Christians are so unlike your Christ."
~Mahatma Gandhi


(Now there's some food for thought!)

Oy vey. :-)  Being able to blog out my thoughts and feelings is a true indulgence.  I really appreciate the 3 people I know read my posts for indulging me - Thank You!