I guess there is something to be said for doing as your health professionals tell you.

So far I am keeping levels level and actually gained a couple percentages of kidney function back.  Perhaps I can stay in stage 3 for awhile.

Last Fri. I went to clinic...saw the nurse, Dr., social worker and dietician.
They suggested I go back to the diabetic clinic so I'll make an appointment to do that soon. Everything seems to be good and I even lost 14 lbs. :)

It is not fun to be me but, IF I do my best to follow the rules maybe I will keep myself on an even keel and have longer to enjoy my life, friends and family.

Wish me LUCK!

I am dealing with my life one step at a time...one small step at a time...ok damn it then baby steps! Never mind how fast or slow the steps are the fact is I am making the neccessary changes to take care of myself!

I AM having a very hard time giving up potatoes.
I have been doing better getting more protein mostly from eggs and sometimes from meat but I'm getting very sick of eggs.  You know if you read this blog and you have any ideas whatsoever about what kind of recipes to make with eggs PLEASE tell me!!
I also need some ideas about more fruit and veggies incorporated into my meals.
I guess I should look for some diabetic recipes.

Oh...the excercise isn't going that well but, I am going to start drumming again...WIP got me a drum lesson book for xmas so I have to try it out...it's going to be sweet cause it will help me with fills!!!!!!!!! WooHoo!!!

Well...
I guess I've settled into some passible routine of what will be my life.

I miss dairy but, I just eat LESS of it.
I still have a hard time with meat but, I do eat MORE of it!
I will have a hard time finding ways to eat meals without tomatoes because I love them soooo much!
I also will miss eating baked potatoes with steak and even fried leftover potatoes for breakfast.

However, these things need to be done and kept up with...I have found that doing what the Dr. and dietician and diabetic coach say...actually work and bring down your levels to where they are safe and bring up your blood count to where it should be and lower your BP sufficiently and creatnine levels too...

It's all good and I can live with it.  Now....to begin with the exercise

Ok...Monday was a long afternoon in Orillia at the kidney care clinic.

First I saw the nurse.  She gave me a binder full of information to read and we discussed my bloodwork and talked a little bit about how the clinic works.

Then I saw the dietician who spent a long time finding out what I eat and she gave me papers full of information about foods I should and should not eat. Plus a specific list of things she wants me to do from now until my next appt. BAH!

Then I saw a social worker who suggested I should try applying for the CPP Disability Pension because soon I won't be able to work at all maybe and every little bit helps so I guess I will look into it.

 

And also we had a bit of discussion about dialysis.  They don't want to overwhelm me but, I need to take care of myself so we can keep that from happening anytime soon...so I have stuff to read and do and some decisions to make...I don't want to do any of it...but, that is life and sometimes we have to do things we don't want to do.  I want to be here as long as I can...life is short and precious and I want to cherish every minute of it with every one of the people I love!

Well...so it has begun.  For the last week or so I've been taking antibiotics for an infection I can't really even feel or really know I have.

I just know my kidneys hurt and twinge a bit...which does happen sometimes anyway.  So...

The journey begins.  Where I will now always worry there is something wrong with me.  I'm feeling that I need a nice warm bath right now though so this post is short...

I will have more to say later.

And so begins this journey I never wished to travel...

I found out what stage of PKD I am at on Monday.

I was hoping for a 2 or 3 but I am right on the line between  3 and 4.

The Dr. believes my cysts are starting to rupture and can now cause infections I may not even be aware I have.  I guess that means lots of bloodwork...regularly from now on.  I wouldn't care much cause I'm not bothered by needles at all or blood but, my veins hide and they often either have to poke me 3-4 times or get blood from the veins in my hands, which I don't mind telling you HURTS more!

The Queen of Chaos balks at having to get so much bloodwork and see so many Drs. so often. 

I don't deal with this stuff very well...and it's not going to get any easier.  I have known since I was 21-22 that I had PKD and really tried to avoid the decisions I will have to make...I knew I would really but, when you're young there is always hope that it may not be so.

It is so.  I will have to decide about dialysis and/or transplant eventually and I just don't want to. I don't WANT to deal with any of it actually...I never have...and there is the thing...LIFE...is NOT fair.  Shit happens you have no control over and then you have to deal with it.

So today as well as yesterday I am just overwhelmed with the sheer magnitude of things that may or may not come my way due to the high blood pressure, PKD and type 2 diabetes that is now my way of life for the rest of it.  However long or SHORT it may be.  I would like to delude myself into believing it will be longer than I think but, really who am I kidding?  I can't change anything about me.  If I could I would have done it years ago.  The result likely will be that some complication from one or more of these health issues that plague me will end my life sooner rather than later.

Is it any wonder a person is depressed and really doesn't see much point to her even being here?  Is it really any wonder she falls into deep blue funks she can't get out of and really doesn't know deep down why there would be any reason to bother to? 

 And yet, I understand I have wasted a great deal of my life feeling sorry for myself.  I know there is more to my life than this set of diseases that wreak havoc inside my body. 

So...at 37 years old I have decided to try new things.  I have decided to do the things that give me pleasure and joy...to cherish the people who give me these things and to TRY very hard NOT to worry about what I can't control.

It's gonna be hard not to get down in that funk again. 

I'll keep ya posted.