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Friday October 13, 2006

WOW...what a week!  I sit here at 11:17PM writing this.  I cannot sleep.  I'm so tired...exhausted... and still cannot sleep.  As I tried laying next to my husband who is now hooked up to his cycler inside my bedroom.  I feel we have been violated.  This invasion into my safe haven is NOT welcomed and I don't like it.  It shakes me to my core today, and I'm a nervous wreak.  I want to throw up all day.

As I waited to receive Johnson's first shipment of equipment and supplies this morning, I receive a phone call from the hospital.  It is Johnson's nurse.  Johnson went in this morning to do some blood work, and to do another dialysis treatment and I stayed home to receive his stuff.  She tells me not to worry too much.  They now know why Johnson has been so sleepy this week.  His calcium and phosphates are extremely elevated, and she doesn't want to send him home until he is seen by the doctor.  As well, she tells me that there seems to be some rupture in his abdomen, and there is swelling.  Johnson had to leave 1 litre of dialysis fluid in him all last night and it didn't go well.  When he got home from the hospital last night his blood sugars were 24.  Way too high...then last night, woke with a low blood sugar.  What a roller coaster.

All week during our training you see, Johnson could not stay awake.  He kept falling asleep.  We all joked about his snoring, as he kept the whole unit awake and laughing with is loud snores.  You see... it's hard to train when you are not well, as you cannot pay attention, and your body is screaming to sleep.  So sleep he must, yet somehow we still manage to learn alot! 

We must learn how to take your weight and blood pressure each morning before unhooking from our machine.  This helps us to learn which dialysis solution we need to use.  High sugar solution or low sugar solution.  We determine this with 4 factors...

1.  Does Johnson feel OK?

2.  Is his blood pressure good?

3.  Does he have any swelling?

4.  ??? see...can't even remember the fourth right now... It's alot to take in.

I am upset about the news the nurse has given me.  Approximately 50 boxes of supplies arrive this morning.  The sure volume of it all overwhelms me.  I must organize it all and clean it all before Johnson get's home.  When I get upset... I clean!  I must say... today is one of my best cleaning days!

I open all the boxes I need, then run off to Walmart to buy baskets and storage units to make this stuff more accessible to Johnson and easy to get to.  Then rush home to make it all look pretty.  50 boxes... and this is just a 2 weeks supply.  It amazes me.  I manage to hold it together, Johnson arrives home around 2:30PM and the nurse arrives 1 hour later to help ensure I have all the equipment and drains hooked up properly.  She helps us to program Johnson's cycler.  Wow...this is so real and so heavy on my heart.

I am very sad today and very angry ... I feel I must get a few things off my chest and this is the best forum for me to do so, so here goes... for those people who are unwilling to take the time to learn/educate themselves to understand diabetes and kidney failure. 

Although the causes of Type 1 diabetes are not entirely known, scientists believe the body's own immune system attacks and destroys insulin-producing cells in the pancreas. It is not caused by obesity or by eating excessive sugar, which are two common myths about type 1.  Both genetics and environmental triggers are being studied as potential causes of type 1 diabetes.


 Myths and Facts

#1.  You do not get Type 1 diabetes from anything you eat or drink or do.  If this was true, we would all have Type 1 diabetes.  It just happens... it's no ones fault. 

#2.  It is a myth to think that diabetics cannot have sugar, dessert s or alcohol.

#3.  Insulin is NOT the cure for diabetes, it is just a treatment or therapy if you will, but it IS necessary to keep you alive.  Insulin is the only thing which keeps Type 1 diabetics alive.  Without it they die.  I challenge anyone to find us another proven method/technique etc. which will enable a persons pancreas to work and produce insulin again.  If there was anything else out there, we would all know about it. (Although I do believe in the miracles of GOD!)

#4.  If a Type 1 diabetic keeps in perfect health and eats perfectly and keeps very good blood sugar controls, he/she will never develop further complications.  This is a myth. 

So really think before you speak...don't make un-educated and callous comments about any one of these myths and think that it's Johnson's own fault he is where he is today.  If only Johnson took better care of himself, if only he didn't party so much when he was younger...if only he didn't get drunk a few times a year, if only he didn't have that beer, if only he didn't have those sweets ... then he wouldn't be where he is today ... Johnson brought this all on himself, and because of his actions he is where is is today.  Again... if that was truly the case, then we'd all be in his shoes today wouldn't we.  Oh yes... we have heard it all.  If you still feel that way, I wish you could walk just 1 mile in his shoes and feel everyone's judgments.

I ask some of you... where is your compassion?  Even if all these myths were true???  Where is your compassion?  How can you sit there and pass judgment?  I wish you could walk in my shoes...wonder what it would be like if your best friend was taken away... whether the father of your children will be there to see his daughters grow up and get married one day.  Where is your compassion?   These are the facts.  I live them every day... and today I am ANGRY because the reality of this all happening is VERY real.  This is very real. 

 



 

Now we must deal with kidney failure as well.  Again...don't forget, Johnson was told 8 years ago that he would need to start dialysis as his kidneys were failing rapidly, but because Johnson took good care of himself, and with the help of his amazing doctors, he was blessed with 8 extra years without having to go on dialysis.  Surely that is something?  Johnson is a record holder in so many ways and a miracle in so many ways too!  He is the record holder to date, as the only person to have had a catheter inserted for 8 years before it needed to be used.  

 

Because kidney failure is invisible and because dialysis is a therapy/treatment, people do not fully understand the seriousness of it all.  They just think dialysis will fix it.  There are so many complications that can arise out of kidney failure, many I have mentioned on other dialysis pages.  The most prevalent one I'd like to remind everyone of is that 1 out of 20 people on dialysis DIE!  That means Johnson has a 1 in 20 chance of DYING if he doesn't receive a kidney, or DIE of other related kidney failure complications.  Again... 1 in 20 chance of DYING.  A one in twenty chance of me loosing my BEST FRIEND, a one in twenty chance that Stephanie and Taylor will not have their dad to walk them down the aisle someday!  I am VERY SAD AND ANGRY today, so please forgive me for my ranting.

 

I heard from so many people when Johnson and I started this "Team Diabetes" journey, that "They are just doing this so they can go to Hawaii".  Really?  That is what many people thought and some still think.  Some just at the first, until they saw how hard Johnson and I worked to help raise awareness and money for diabetes.  I challenge anyone... it is no small feat to try and raise $12,000.00  Could you do it?  It was hard work.  Did those of you who thought or still think this really believe this?  I mean Johnson has been a diabetic for over 25 years!  Perhaps this could be his reason, this might actually be his only motive?  I know that mine was to feel less helpless as a spouse of a diabetic.  I wanted to help raise awareness about diabetes, to break down the barriers...help educate those who believed the myths about it?  I wanted people to SEE!  I wanted people to understand what it feels like when your husband is in a diabetic coma and there are 8 people in your bedroom trying to revive him!  You know...Johnson would surely trade with all of you a trip to Hawaii, in exchange for not having to live with diabetes for 25 years.  It's all very nice for you to say "they just did this to receive a free trip".  Think before you speak will you!  I know and Johnson knows our hearts and souls were in the right place, and those of you who REALLY know us, understand and know this too!  We worked hard to raise $12,000.00  We thank everyone who helped us achieve our fundraising goal!  Thank you to those people, who take the time to ask questions, who try to understand all of this and have compassion for us.  GOD bless you all...you will never know how much it means to me.  How much it means to US.  I love you all!

 

Johnson and I have many miracles and blessings and we count them everyday.  I know that GOD will make me a match for Johnson, and if I am not, then he has a bigger plan for us.  He has given us these hardships because he knows we can handle them and that others couldn't.  He gives us these hardships sometimes to draw us closer to him, and we are.

 

My father-in-law sent me this link in an e-mail the other day.  It brought me to tears many times.  It is exactly how I feel, I am the blessed one.  I am blessed to have Johnson in my life, hardships and all.  I love him.  So please everyone... pray for us, cause some days it is hard for me to do it, and I know you are all carrying Johnson and I through this.  Drinking from my saucer.

            

 

Saturday October 14, 2006

 

Ok...I'm calmer today.  I'm done ranting for now.  Today is not an angry day...it is a quite day of thought.  We had a very rough night.  I finally tried to sleep around 3:30AM.  Johnson was very uncomfortable.  He did 4 exchanges last night.  Imagine...you fill up a sand bag weighing 5 lbs, now lie down on your back, put the bag on your stomach and try to sleep.  It's heavy!  I can see Johnson's stomach increase in size very quickly.  It's like becoming pregnant with a 5 lbs baby within 5 minutes.  At least I had 8 months before that happened to me.  I was weaned into it.  Johnson's is instant.  Then every 1 and 1/2 hours, it drains.  This wakes him every time because he is experiencing pain.  The machine sucks the fluid out of his abdomen, and we are learning quickly that it's all about the bowels.  They must be practically empty in order for the draining to not hurt.  So it's prescribed laxatives and stool softeners for Johnson now.  He hates all of this.  He can't get comfortable, I can't get comfortable, we do not really sleep.  I catch him waking every 1 and 1/2 hours when the machine starts to drain, and he needs to sit up and rock back and forth to ease the pain while the machine does it's job.  I must go into the spare room in the hopes I may actually get a couple hours of uninterrupted sleep.  HA!  The girls find me as they wake to have a pee.  They come in one by one and snuggle me in the spare room.  I must admit...most nights I hate this interruption, but last night I welcomed it.  I needed to feel their little bodies cuddled next to me.  It comforts me.  My eyes are so puffy I can barely see.  I hate that about my eyes when I cry.  They become two little slits!  It's really quite funny actually!  Tonight I am considering using Preparation H on my puffy eyes...I hear it shrinks the swelling.  I don't think I have every experienced this type of exhaustion ever in my life.  Not even waking with a new baby every few hours made me feel this way.  Poor Johnson, he had a worse night.

 

He learns how to disconnect and record all his information such as what fluids went in, how much came out, what his blood pressure is sitting, then standing etc.  I finally fix myself up today, in the hopes that it might actually make me feel better.  It helps.  Off to the grocery store to sell girl guide cookies, then the girls leave for a 3 hour birthday party at a neighbours house.  Those blessed 3 hours!  We run errands, and have time to just hold hands and talk to one another.  I tell him how angry and sad I was yesterday.  We just have to get through these few bad days.  We thought we had been through the worst of it all...I thought we were doing better, then BAM!!  It's like a punch to the head...all the supplies come to the house and I find we are back at day one all over again.  It's a quiet night in tonight, Johnson is setting up his cycler now at 7:54PM.  We now have to time things like, when should he connect if we want to get to church on time tomorrow?  He must be attached for 9 hours.  There is no cheating...you can't just do 8 hours.  Then add another 1/2 hour to disconnect, write everything down in our logs etc.  It's a lot.  I took a few photos of Johnson last night and again this morning and welcome you all to view them. 
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