Wednesday, March 27, 2013

In Sickness

If the roles of John and I were reversed, I'm not sure how good of a marriage partner I'd be. 

As I was sitting at the edge of my tub, John behind me washing my hair because standing in the shower proved unthinkable today, I couldn't help but wonder how I would manage doing all of what my husband does for me ...
I absolutely and completely love my husband.  How could I not?
He's hilarious.  Makes me laugh daily. 
He is loyal. 
He is sexy as you know what.
He is a hard worker.
He is a loving and compassionate father.
He is a loving and compassionate husband.
I really could go on...
But, am I any of those things to him??
Could I go out and work every single day, just to come home and take care of him?  Could I break my back climbing up and down ladders, crawling under sinks, or cleaning out gutters - just to come home, listen to him say how sore he is from his chronic condition and then help him wash his hair, assist in changing bed sheets, fold laundry, cook all the meals, and help our child with her homework? 

I definitely like to think I would...
But, would I?

“Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, vision cleared, ambition inspired, and success achieved.”  -Helen Keller

Oh, the trials we've been dealing with!  And the hardships.  The scares.  The worries.  The loss.

So, I can honestly say I don't know.  I probably won't ever know. 
But, this is the life that God has chosen us to live.  These are the cards we were dealt.  These are the lemons we were handed... 
Go ahead, use your own cliché saying.  

Almost every person who has gotten married has repeated a form of these vows -

I, ____, take you, ____, to be my lawfully wedded (husband/wife), to have and to hold, from this day forward, for better, for worse, for richer, for poorer, in sickness and in health, until death do us part.
Well, we certainly have the "poorer" part down.  LOL!

But, more importantly, we've taken the whole "sickness and in health" for a good and seemingly unending ride.

Of course, when we said those vows, all we could think of was our bright future together.  A cottage in the woods with a couple of children - all topped with the white picket fence and not a care in the world.
I'd like to think that all newlywed couples were as equally as naïve as we were. 

So, this post on my blog is a dedication not to just to John who has taken his vows seriously and has really shown and proven what a good and loving husband ought to be, but to all those men who don't take the easy road out.  Those who don't visit the bar every night on the way home from work.  To those who come home and love with all their hearts.  To those men who aren't afraid of doing a load of dishes. 
To those loyal and loving men, thank you. 
If something awful were to happen and God forbid, I didn't have John in my life anymore, I don't believe I could be fair to another man. 
They'd have some large shoes to fill and a long pedestal to climb up if they wanted to come close to measuring up to my John.
I'm not too sure if John will ever read this blog, but if he does, I hope he knows how much I appreciate his willingness to be a perfect husband. 

Tuesday, March 26, 2013

My Easter story

I am a child of God.  I was brought up in the church.  I went to a Christian elementary school and every Sunday I went back to that school building to attend church. 
With two deeply religious parents and a super long driveway, separating me from the evils of the world, I felt very strongly for a very long time that I had a close and intimate walk with God. 
As soon as I left my spiritual roots to find my own way - without the constant Bible reading and sacred teachings of the Word, I quickly found myself happier than I ever was in the religious setting of Chapel Christian Academy. 
So, for many years, I walked around with knowledge of God, Jesus, and the Holy Spirit, but did absolutely nothing to be a witness to those around me.  Sure, I found a new church - one that I visited almost every Sunday with my family - Mountain View Chapel.  And sure, I hung my head in solemnness to pray.  I even went as far as inviting friends to youth group gatherings and to Sunday services. 
But, I didn't mean any of it.  I guess I thought I did at one point, but I never really understood it.
Fast forward to now.  I got married to an incredible man.  My best friend.  I had a daughter.  I have a home.  I drive a fairly nice car.  Don't have a lot of money, but my needs are always met. 
there was always that missing piece.  That piece of me that I left die alongside the road in a ditch.  It's that something that made me..... well... me.  I let it die and along with it came bitterness to all things holy and sacred.  Sure, I was still a nice individual.  And sure I still smiled and laughed and played.... But, I wasn't fulfilled. 
It wasn't until this past year, when I met up with my parents one Sunday morning at the church they have been going to, that I finally found that missing puzzle piece.  I went, talked with the pastor several times and got to know some of the people there. 
And little by little, that emptiness inside me was replaced with forgiveness, grace, and hope. 
And while my personality as a whole hasn't changed all that much - I'm still a happy person (albeit with a shorter fuse than some and I get angry from time to time) and I love to laugh.  But, one thing is different.  I know.  I know.  I know
Maybe it's the growing up I had to do - quicker than most.  Maybe it's the tragedy my life has seen, and believe me, I've endured great personal tragedies.  Maybe it's the fact that I am an observant person who can judge or gauge situations and people with my gut. 
Or maybe it's the holy Spirit inside me.  That voice from my guardian angel or Jesus whispering in my ear.  But,  I know now that I am a more happy and content person since I found God again. 
Don't worry.  I still laugh at the same jokes I used to.  I still listen to great music.  I still swear (on occasion) but will really avoid taking the Lord's name in vain. 
And I won't be beating you down with my Bible.  Or preaching on the city street with my cardboard sign that warns of "judgment days" and "end times."  There's a myriad of other people for those types of things, and I'm not one of them...
But, I am a sweet woman with a great sense of humor and a greater sense of family. 
So, as the Christian people get ready to solemnly remember why Jesus died on the cross and rose three days later, I am going to celebrate it because I know who I am and why I was put here on Earth and will be busy thanking God for dying for me and all my transgressions.  But, I will also be in remembrance for His work while He was here on Earth and the things he taught. 
Happy Easter to all...

Wednesday, March 20, 2013

Pump Tweaking and Lunch with the Sexiest Man in the World

Visit with the endocrinologist today.  Good visit.  They made some adjustments to my insulin pump.  Let's see... they increased my daily basal amount.  They also made changes to my middle of the night insulin amount.  So, after a half day with just those minor adjustments, my glucose readings are already improved.  Had a lovely, oh so wonderful, 106 right before I sat down to eat dinner. 
I will have to wait till I've had a whole day on these changes to actually come to the conclusion that it was 100% effective.  But, if my dinner time readings are any indication, then what we did today at the doctor's office was a smart choice.
I know and definitely understand why they make small adjustments at a time.  They have to just "tweak" it here and there.  But, I'm pretty sensitive to my high glucose levels. I really feel ill when my blood sugars are too high - even if it's just for a little bit.  This past week, my first full week on the insulin pump, I've experienced many high numbers, over and over again.  How frustrating that  was!   My thought process was a simple minded one (at best).  I kept thinking and worrying that I made the wrong choice with going over to the pump.  I mean, the whole point in getting the pump was to better control my blood glucose levels, and with all my highs this past week, I kept second guessing myself.  I ended up changing my site on a daily basis, thinking that it must be that, that was keeping me high.  I was wrong, and now I know that they just needed to make some setting changes in my pump. 
So, with that said, I am on day two with the same tubing and insertion site as yesterday.  And my levels seem to be improving. 
After my appointment this morning, I made an impromptu call to John to see if he wanted to meet me for lunch.  He said, "Sure.  Sounds good.  How about Applebees in Exeter."  I was ecstatic!  "Of course!  I'll wait for you in the parking lot." 
After sitting in the parking lot for five minutes, his van finally pulled into the lot and my heart skipped a beat as I saw him step out of his work van and walk over to my car.  I married a very sexy man.    He opened my car door for me, extended his hand to help me out.  We hugged and walked into Applebee's to have a nice and relaxing lunch. 
So, sitting there telling John all about my appointment, I realized that I had no idea what kind of carbs were in any of the dishes on the menu.  I had left my Calorie King book at the house.  So, the awesome server brought over a nutritional guide for me.  I did, indeed find my sandwich on the menu, and my jaw dropped.  The carbs I was about to have at Applesbee's was over double what I usually have for breakfast and lunch combined.  So, I only ate half of my sandwich and ate the other half for dinner this evening.  But, how nice it was meeting John for lunch today.  I really love my husband, and I know he loves me....
I gave my mom and dad Olivia's old Dell Mini laptop.  Mom kept complaining about their dinosaur of a computer at home, and how it took two hours to check emails and to look up crochet designs.  And since Olivia can surf the web on her Ipod, my laptop, or our home computer, I figured that for what mom wants to do online, the perfectly virus free and nice working Dell would do her good. 
So after I get done with aqua therapy tomorrow, I'll be headed over to their house to set her up with Itunes and Skype.  She seemed excited about all of the new possibilities a laptop provides. 
Friday, Olivia goes into take her glucose tolerance test and some additional blood work to finally confirm if she has diabetes and if she does what type and then to see if she'll need to start on any kind of medication. 
I guess that's it for now.  I'm going to hit the sack.  I've been so exhausted, what with starting the pump, Olivia's health, and starting aqua therapy, my own health- just plain worn out. 
Have a good night, my very few but very dear readers.

Thursday, March 14, 2013

This and That part 2

Yippee!  I feel like a free woman!  No more loading up syringes and no more dialing a pen to stick somewhere in my body... For two to three days at a time, I can just put in my blood glucose and my carb intake with the push of a few buttons, and that's that! 
I must say,  I am highly impressed and elated at this newfound freedom. 
Yeah, I still have to prick my fingers several times a day, but the fact that I don't have to stick myself with a fresh needle in various body parts SEVERAL times a day leaves me feeling, well, giddy...
I haven't stopped smiling since I hooked up today with insulin at the endocrinologist's office. 
No sir... just smiles today and a feeling of freedom. 
So, with that said, we did manage to muck our way to Philadelphia on Tuesday.  I had GPS'ed it, mapquested it, and even had an old map in the car.  All for our trip to see this "great" doctor who would've more than likely told me what I already know. 
That I'm broken.  He probably would've told me about the (already established known fact) neuropathy in my feet and legs and maybe would've given me another fancy label to take back home. 
But, when we got into the city, our GPS had us to 3 different places, all Thomas Jefferson University Hospitals, and all the wrong Thomas Jefferson University Hospital.  I'm telling ya, we spent more time driving around the same two blocks in Philly that the actual trip to Philly. 
When frustration turned to anger and resentment - frustrated because we went to three totally different places, all named what was on my paper, and none of these places were right!  Anger because nobody, not one single person, could give us any better direction than, "Go down the street, and make a _____"  I have to use a cane to walk.  Not only do my feet burn and hurt and sometimes go totally numb without warning, but I have loads of arthritis in my back which makes walking a necessary evil.  So, when someone says, "Go down the street a ways and make a ____",  all I want to do is ask them how it feels when they walk.... And resentment at all the other people who managed to find their doctor's offices without crying out in utter pain...
So, after three huge failures, we left the city of Philly, and almost got out of the car to kiss 422 when we got onto it. 
How do people do it?  Day after day?  Sitting in hours of traffic and dealing with all the morons who share the road?  They have to be making some pretty hard core money for them to do that 5 days a week.  Because that's the only way I could justify wasting that much time.
We used to drive to Philly, several times a week, when I was pregnant with Olivia.  My specialist was there and after awhile, we grew somewhat accustomed to the drive, but that doesn't mean we didn't get frustrated on every single trip made....  Cause we did. 
And this time was way worse.  I'm here to tell ya, that the place I was supposed to go... the place I had an address for... it just DOES NOT exist. 
So, needless to say, didn't see this so called "expert" because he practices in crappy city where there is absolutely no "brotherly love". 
I will mention my distaste for the commute we made to my doctor at the end of the month when I go in to see her.  I have a feeling that there is one or two more "experts" that can do the same thing this doc in Philly was gonna do, right here in my comfort zone. 
So, here I am, hooked up to my insulin pump, with actual insulin running through it, and really happy about it...
My endocrinologist is also hooking me up to a CGM - continuous glucose monitor- another piece of high tech equipment that I will be wearing alongside my insulin pump. 
I am just so thrilled that we live in such a good medical age.  While I have being a diabetic, I am sure that I would've hated it a lot more 30 years ago...

Monday, March 11, 2013

On a Lighter Note

As I haven't been blogging long, I have noticed a trend in my blogs.  They've all been on the more pessimistic side - I know it to be true, but just heard it through the grapevine that I need to post at least one or two happier blogs. 
So, as per request, I hope you're happy now.  because this next post is about as happy as I'm gonna get right now... :)
So, now to reach into the vast storage cells of my brain to pick something on a lighter note, a more cheerful note, if you will...
Let's see...
I could post about the evening I married John.  That was an experience.  A fun one, and a memorable one, because, we were actually married twice in the same night.  That's right readers, I'm twice as married than all of you... :)  Or  I could again talk about the birth of Olivia (although that has a lot of dark moments in it, as we both almost perished, so let's forget that one for now)
So, I guess the best form of post would be to talk about the many blessings that have been bestowed on me and my little family. 
I'll begin with a roof over our heads.  It's not the nicest roof, nor the biggest, but it is indeed a roof.  And on the nights (and days) where it's raining animals, I'm happy as a clam to have said roof. 
I also, on a daily basis, have food in my belly.  That's a big plus.  I couldn't imagine going hungry.  How painful that must feel.  God, I can't go five hours between meals.  I start to panic at the idea of actually starving to death in those moments, and it's not even close to becoming a reality.  So, having food daily gives me great joy and comfort. 
I also have the basic necessities for life.  Water, electricity, cable TV (yes, having more than 15 channels to go through is a necessary thing for me to have)... Even having something as simple (even though it's such a complex device)as a  cell phone leaves me a feeling of tremendous gratitude. 
I am happy and blessed beyond what I deserve.  I know that.  I can appreciate that. 
When I initially started to blog, it was more or less a way to vent and complain, but I guess even a complainer like me has good things to talk about.  So, here it is. 
I am also ecstatic at the thought of a new series that has come to television - you can catch it on the History channel and I know I've seen it advertised on the Lifetime channel as well.  I watched the first episode of The Bible, and while it truly is "an adaptation" of the Bible, it gives a fairly (although not entirely) accurate description of the good book.  They certainly made it for TV, to get you coming back, which has worked on me.  So, that leaves me happy. 
I think it's a little funny that I go to watch my taped television programming and at the top sits The Bible and underneath of that sits The Walking Dead, followed by Criminal Minds, Ghost Adventures, and various other shows that I cannot stop watching.
I am indeed  a blessed individual with a great many things that I need to find more joy in. 
So, thank you to that dear reader, who brought it to my attention that I need to write about happier things.  When I sit down to write, sometimes all that comes to me is the bad things that I could not express during the day.  But, this little exercise has forced me to look into the nicer things in my life.  And for that, I am grateful...
Tomorrow,  we're headed to Philly for my test.  Wish me luck!  Fingers are crossed....
Till next time, my very few readers...
Over and out...

Friday, March 8, 2013

This and That

As John leaves to play Tarzan in the woods for another camping trip, I'm again left behind to sit and whittle hours away thinking and pondering the wonderment's of my life.
So, as I sit here, whittling - if you will, I can't help but think of the "thing" attached to my abdomen.  It's a very impressive little insulin pump.  Meant to give insulin throughout the day and to give the diabetic more freedom to do more without carrying around vials of insulin and syringes (although I haven't done that in some time, I actually switched to pens, but the pump eliminates those as well) and to the freedom of not worrying about your diabetes as much. 
While it's only my first full day on it, I see many reasons why it will indeed give me that aforementioned freedom.  But, I also see a few flaws in it as well. 
Why can't they put a few more thousand dollars into a machine and let it read your blood sugar for you and give you that required insulin?  It makes so much sense to me.  The whole point of the insulin pump is to make a diabetics body more like a non-diabetics body - i.e., it gives you tiny shots of insulin throughout the day.  However, you still have to prick your fingers everyday, several times a day for your pump to know what your blood sugar is.  Now, I'm not a rocket scientist, but, wouldn't it make sense for a machine to take out that extra step? 
Maybe I'm not thinking clearly enough about it.  I know we have to be aware of what our blood sugars are, but, Medtronics charged my insurance company $7000 for this machine.  Now, for $7000, you'd think you'd get a lot more than just a form of insulin delivery. 
Anywho, I slept last night with this thing attached to me.  And I must say, I was really skeptical about it staying put all night long.  But, it did.  It really did.  Didn't budge.  And John even said to me this morning that I was having some f***ed up dreams last night, where I was talking and swearing and hitting and I guess I was a little restless as well.  And yet, the pump and tubing were still intact.  Bravo on that note.
Going to the bathroom was a little iffy.  I find that I have to take the pump off and either clip it to my shirt, or rest it on my leg, as my tubing doesn't seem to be long enough to stay attached to my pants.  That maybe just as simple as switching sites though, or even getting a bit more longer tubing.  I'll have to look into it. 
There's also the whole carb adding thing.  I am still not entirely used to doing that either.  While I'm happy that my machine does the hardcore calculations for me based on my particular needs, I still have to enter in the carbs that I'm about to ingest.  I'm not used to doing that.  But, with time, I'm sure that will become second nature to me as well.
I know it's way too early to give an accurate description of the Medtronics insulin pump.  I've only had it for a day.  And while I plan on using it from here on out, the more I use it, the more I'll get to know it, the more I'll blog about it. 
So, what else... what else...
I started aqua therapy.  Very fine therapy for someone in my physical condition.  Unable to walk any length and unable to stand for any length.  The water is a great way to burn some calories and strengthen some of my core.  Use some of those muscles I haven't used in two years now.  That will definitely add to my quality of life. 
Next Tuesday, we head to Philadelphia for a new test my neurologist wants me to have.  It's not an EMG/nerve conduction study either.  I have already had that.  Which of course showed neuropathy in both my feet.  But, something else to test for myopathy - or a muscle disease.  Don't know if I have anything like that, but again, we shall see. 
Oh, and we finally got Olivia into see her pediatric endocrinologist.  With all of Olivia's labs in her hands, including those from last year (the ones from last year, nobody ever told us about)... it turns out Olivia's GAD antibody test came back pretty over the top positive and that the testing her pediatrician just did showed signs that she is in fact a diabetic.  What type, we still don't know.  But, she still requires testing.  We're currently checking her blood sugars daily and I have to tell ya, she's getting some funky readings.  Her pediatric endocrinologist thinks Olivia may be one of those rare people with type 1.5 diabetes.  Ugh... just google it...

Anyway, that's it for now... 
Till next time, my few readers

Friday, March 1, 2013

Pumping with a $7000 unit

Three 90 minute classes.  Well, actually, it was more like two 150 minute classes and one 40 minute class.  (But, then I've always been a clock watcher)   But, that's all it took for me to learn how to use and operate a $7000 (that's right I said seven thousand dollar) insulin pump.  I guess the thought process is that they put a lot of money in you now to save bigger money in the long run (i.e., kidney dialysis, limb amputation, that sort of thing)
You see, I've been struggling for years with my blood sugars.  It seemed like no matter how hard I tried, I just could not get my sugars under control.  And I did try.  There were times when I would bike for miles and miles and there were days years ago that the three of us would go on day long hikes and hike for miles and miles and still my blood sugars were so out of whack, I would just be so stumped.  And then two years ago, I woke up one morning and I could barely get out of bed, could barely move, let alone put my slippers on.  I remember the exact day.  It was a day in August of 2011.  A day that would forever change our lives and how we see and do things.  A day that made me seek help for all sorts of problems.  A day that started a whole barrage of testing from doctors and specialists and then I started to seek help from the government and I ended up getting one of those handicapped tags for my car and had to get a cane to help me to walk from point A to point B. 
Isn't it weird how life works?
Anyway, that day in August of 2011 has led me to this point right here. 
I took three insulin pump classes. 
And now, I know a lot about how to use and operate a little unit that is supposed to help control my blood sugars better.  This unit will be giving me little fast acting shots throughout the day (basal shots) and at meal time I'm to bolus (put in the carbs and my blood sugar) and then go on through the rest of my day.  The site is to change every couple of days.  I guess I'll keep it attached to my abdomen, just switch sides of abdomen and go higher and lower in my stomach, that sort of thing...
I'm to remove this unit when I shower, swim, or have sex.  The three "S's"...  Ok.... easy enough.
My doctor just signed me up for aqua therapy.  As it stands, I am going two times a week for ten weeks.  So, I'll have lots of practice "disconnecting" from my unit to swim. 
I am a little concerned about sleeping with this unit on.  And I did mention it to my instructor.  I am (to say the least) a very violent sleeper.  I thrash around ALOT in bed.  I yell, I hit, I scream, sometimes I even get up and move around in my sleep.  But, my instructor says it's fine.  She says it's no different than being awake.  She makes a good point.  What she means is, I walk around when I'm awake, so what's the difference if I'm doing it while I'm sleeping? 
Anyway, in a few weeks, I'm going to Philadelphia.  My new neurologist is sending me there for some new testing for my neuropathy.  I'm pretty sure she's trying to rule things out, rather than rule things in, but, hey, good.  I'd like to know as well.  Her concern is with my incredible leg pain.  And let me tell ya, it's bad.  There are times when my leg pain gets so bad, I actually consider sawing it off.  I'm not kidding.  It's incredibly painful!  I'm anxious for answers.  And apparently, this big wig doc in Philly is the man to see.  I feel as though I'm seeing the Great and Powerful Oz, the way she was describing him.  He's the best of the best.  So, we shall see. 
Let's see... Anything else??
Oh yeah...
I recently went to an ophthalmologist.  She says I now have mild retinopathy in my left eye.  That makes sense.  For a little bit, I've been seeing little black (tiny) specs in my left eye, but they always went away quickly.  She said, it's mild and for right now, it probably won't get any worse and that  it's a good thing I'm going on the pump.  So, she'll keep an eye on it (hahaha!!!  she'll keep an eye on it)  and monitor and make sure it's not getting worse, but if it does continue to worsen there are things that we can do to try and correct it. 
The many problems I am facing are because I spent many years as a type 1 diabetic with no health insurance.  I couldn't afford to see doctors and a lot of times couldn't afford my medication.  Thanks to the freakin' high cost of pharmaceutical companies supplies, I couldn't even afford my testing strips.  So, when people look at me and say, you should've taken better care of yourself, I just wanna slap the crap outta them.  How dare you judge me.  You try to get private health insurance as a type 1 diabetic.  Let me know what it costs. 
Anyway, that's what's been going on....
Till next time dear reader...