Aranesp~12/19/2013

Shot taken.

Aranesp~12/05/2013

Shot taken.

Aranesp~11/21/2013

Yep another shot into me.
Increased insulin a little bit and it seems to have helped sugars so I'm on track and somehow managing.

Aranesp~11/07/2013

OMG! It's shot day! Apparently my internal clock or whatever it is that learns to keep track (because I'm mentally deficient and  SO forgetful) is working because I woke up from a nap thinking, Hey! It's Thurs. and isn't it Aranesp day? and looked at my calendar which did NOT say so (because I forgot to put it in-no way to set for every two weeks) but I looked back 2 weeks and what do ya know? It IS shot day!
So I haven't taken it yet but it is sitting beside me getting to room temp so I will very soon.

Some parts of me are working and doing what they are supposed to! I'm often very distracted and very easily and always mind racing a mile a minute so it is hard to destress myself but, naps help because I can't be "busy" while I'm sleeping! Only then I have to stay up later cause I've slept half the day away...maybe I should rethink and redo and have a better system but ...whatever!

My Thoughts

Off and on I am thinking about myself and my life. Where I have been, where I am now and where I may be going in the future. I wasted a lot of time in worry and have been my own worst enemy throughout my entire life, blocking myself from moving forward in any positive way from fear and negative thinking. Why do I want to spend time and energy and invest myself in anything if I'm just going to get sick and have to give it all up anyway? So I have given up before I even started.
     I am writing. I have always wanted to be a writer but, I spend more time thinking about it and planning it than actually doing it because writing means digging deep inside and facing the truths that live there. They are DEMONS and they are dark. This has been a truth I have run from for 40 some years! AND, writing is WORK. For me...it is easy when I start and the words flow like water in a stream...they go where they flow but the work comes in STARTING. It comes in believing in MYSELF. That I am capable, that I am worthy, that I have a voice and that it is equally valid. That is HARD work for me.
     HARDER even still is telling the ego inside me that says, NO...you can't do that!...who are you to think you are good enough to write about that?...who DO you think you are anyway?...you're not good enough, you're useless and a waste of time and space, and NOBODY wants to hear what YOU have to say...to SHUT  UP! I strive EVERY DAY to knock that voice out, spin it on its head and DO things anyway, write anyway, TRY anyway. How could I ever get better if I don't?
     How this has anything to do with my disease is this...and I've been thinking about it a lot because of my step-father. We talk about it sometimes and all the ailments that come with age and he gets upset with me because I tell him, "I am NOT going to get old." I have accepted and made peace with the fact that this disease is going to take me "before my time" but MAYBE it just is my time. Maybe it's ok to accept the path set before me and not chase a LONGER life but rather a DEEPER more meaningful one instead. This is a journey. This is MY journey. Who is anyone else to tell ME what is right or wrong about my choice and manner of living it?
     I frequently get bothered by the doctors, nurses, diabetic nurses, social workers, etc. to face the stark reality that is my existence, that is my disease and to do all the necessary things to "fight" and to be healthier and to live longer and I get it I really do and I work at it too I really DO! I KNOW from first hand experience that their suggestions and explanations make sense and WORK to improve my situation and I won't give up on it I PROMISE but there is this part of me that struggles and fights to live through all of this and sort out how to love and appreciate this life that has been given to me on MY OWN TERMS. That likely means that no matter how much you bug me I will NOT test my BP or sugars DAILY and I will sometimes EAT WHAT I WANT even if it is NOT good for me (and PAY the price too) and I will balk at exercising EVERY DAY because I am NOT an activity seeking adventure hound but rather a reader, researcher, watcher, ponderer, dreamer etc. etc. and the reason for this is that I want to LIVE in my life and NOT worry myself sick and sicker every day by obsessing every little detail of it. I have done ENOUGH of that! IF I do that, in my mind the disease WINS. I want to accept life as it is and find a way to appreciate it ANYWAY...even when all the shitty hits keep on coming. Bring it life! Knock me down as much as you feel a need to. I WILL get up again and I WILL keep trying anyway. WHO is it exactly that says LIVING=climbing mountains, jumping from airplanes, thrill seeking of any kind, or chasing every activity that man has invented to amuse himself? Or that LIVING is NOT seeing the world through the eyes and minds of  people who found the language and words to express it to us? (READING) OR finding peace and joy in simple things and the relationships that I share with others? LIVING is whatever version of life you choose for yourself and that you LEARN and GROW and APPRECIATE and LOVE and SHARE and EXPERIENCE it in a way that fills you with JOY. I struggle DAILY to be the one on top and in control and FREE of worry and stress and insanity about tomorrow. I look to find MY joy. I may not have tomorrow...but I have today. YES, sometimes I wake up already tired and want to give up before I even start and feel crummy so continue to deal with that but also on a lot of these days I FIND support, encouragement and joy from various places and I want to focus on THAT.
     It is NOT easy living through this. The list of complaints is long and the list of people I can share that with is few. It is difficult to explain to those who are not privy to my daily life and struggles because they just don't KNOW. I am grateful to my husband and children who DO realize that life is quite often a very BIG challenge for me and the few friends who are there to encourage, support, listen and try to understand. It would be 100 times more impossible to find JOY at all without them. (Thank you all for that.)
    So I have decided that however I feel and whatever I think (whether good or bad) I'm going to share it with whoever is watching, waiting for, or listening to my voice. I am not going to worry about how anyone else really feels about it. I am writing for those of you who need to know that someone understands and in my own way I hope even the times of finding my way through the darkness to the sunshine beyond can and will encourage YOU also.
     Find and make MEANING out of the crap that life deals out to you and NEVER give up fighting HOWEVER it is that you take to the battlefield. I have to BELIEVE there is NO wrong way to fight a good fight and if you are LEARNING and GROWING and finding JOY then whether or not you are taken "before your time" life and disease do NOT win. YOU DO!!!
...and these are my thoughts today. ;)
   

Aranesp~10/24/2013

Shot day! It definitely helps and upping my insulin by 2 units also seems to have helped a bit as well, I have more energy and have been getting a lot more done lately! Yay!

Aranesp~10/10/2013

Today I will take a shot later but I'm headachy and going back to bed this morning.
More to say later...

Aranesp~09/26/2013

Another shot remembered! ;)

Clinic~09/19/2013

Regular check up.
Levels all good.
Sugars need a bit of work.
Need a little more exercise.
Making an appt on next clinic appt (Dec.) to have buried catheter put in so I'll be ready for dialysis.
Then IF I crash there will be no worries as I will be ready to dialyse immediately. ;)
NOT there yet!

Aranesp~09/12/2013

Another shot done.
Starting to feel tired a lot again but I think its a sugar thing.
Working on it!

Aranesp~08/29/2013

YES! I did take my shot! almost time for the next one already! lol

Aranesp~08/15/2013

YES! I did take my shot! lol
I'm doing ok and I think holding steady...no colds or extra illnesses to mention...just doing my thing day by day...next Sat its my bday and we're having a party...Mexican seafood soup i think ;)
we'll see what happens! :)

Camping

Getting organized to go camping this weekend.
Planning a couple of healthy dinners, some fruits and veggies and snacks and it'll be good. :)
First time in years my son will be with us at his aunt and uncle's place...should be FUN!!

Aranesp~08/0/2013

Took my shot today! ;)

Aranesp~07/18/2013

Yes! I absolutely DID take my shot!

Aranesp~07/04/2013

First shot of the new dosage and will see how it goes over the next few weeks.

Sept. next clinic appt.

Tues. diabetic Dr. appt.

Aranesp~06/24/2013

Early shot yesterday and new dosage on next shot.
Done not to worry for two weeks!

Appt. with Dr. MacFadyen in July...very soon...check sugars daily!!!!

Cinic

Clinic visit went well.
I am holding steady at 20% function.
Stopping Metformin (at this stage it will be harmful).
Starting sodium bicarbonate tablets.
Worrying about catheter in Sept. after metformin decrease and some time to see how it affects bloodwork.
So free summer! ;)
Keep up with diet and get some exercise and continue doing well. :)

Aranesp~06/13/3013

Another shot done and marking time to the next.

Clinic on Tues. this week and appt will be made for buried catheter to be put in...little bit nervous...dunno where I'll go to have it done..

Aranesp~05/30/2013

One more shot down.
(I blog it to keep track of it because I only take one every 2 weeks at this point)

Curiousity

I am curious how many people and who of them are organ donors?
Also how do you feel about signing the donor card as opposed to being a living donor?
Many people wait on a list for years for transplant and organ donation is a touchy subject for some.
If you don't mind sharing please feel free to voice your own opinion in a comment. Thanks!

Aranesp~05/16/2013

Another shot taken...onward and forward.
Bad day today. :( Tired and out of sorts...

Aranesp~05/02/2013

Another shot down.
Easy and no worries anymore! ;)

I Have Decided...

I have had some weeks of stress and worry and indecision about what to do.
Today hubby and I had an appt in home dialysis at Orillia Soldier's Memorial Hospital to be educated about PD dialysis. Originally I told mom and thought to myself that I would choose to use the night time cycler because it seems to be the least intrusive choice for my life and the way in which I prefer to live it. My diabetic nurse suggested Hemo might be better and wanted me to get a prepared by getting a fistula and asking the doctor about this. I didn't want a fistula...still don't actually but, immediately freaked out about it and did have a convo with Dr. where he suggested I lose 10 pounds and have a PD catheter buried so it would be ready for use when I get closer to the time of failure and dialysis. So I said ok and did manage to lose the weight but then expressed that I wanted more information so I could be sure  was making the correct choice for me at my last clinic appt. So we made today's appt. and went to speak to Jodi and learn about manual PD, connections, and the night time cycler machine. I could also learn about Hemo as well but after today I don't believe it is necessary. I'm pretty sure I can handle this. I'm pretty sure eventually it will become just as much a part of life and second hat to me as taking my insulin or aranesp shots (which I freaked out about and hated in the beginning as well) and I will do as I have always done. I will HANDLE it!
So next clinic appt. in June I will request appt for buried catheter and get prepared for kidney failure.
HOPEFULLY it will still be a long way off yet! ;) But, I will be READY and I feel much better about it.

I Don't Know

PD, Hemo, night cycler, in center, at home...
it will be lovely if I don't have to make the decision for a long time
because all of it stresses me quite a bit.
I just don't know which one is better and will work best for me.

Aranesp~04/18/2013

YES I did remember to take my shot!

Pearltrees

Tired

I don't feel well today and I'm very, very tired...both kidneys aching.
I hope that it's just a bad day and not an indication of things getting worse.
Going to visit mom & dad anyway today so I hope I perk up a wee bit!

Aranesp~04/04/2013

Another shot down.
Also working on a lower insulin and NO metformin...
but I think maybe I need to go back up on the insulin just a tad.

31 Days of PKD Challenges: #31

Update your status on Facebook and Twitter to let your friends and followers know you just completed 31 Days of PKD Challenges for National Kidney Month! Thank you for helping us raise PKD awareness!

DONE!!

31 Days of PKD Challenges: #30

We’re celebrating our 30th anniversary this year! Who else is celebrating a 30th? Whether it’s a birthday, wedding or transplant anniversary - share your milestone with us!

31 Days of PKD Challenges: #29

Do you or someone you know have an upcoming kidney transplant? 
Visit kidneylink.org to learn the basics of kidney transplantation and the kidney donation process.

Menu~03/28/2013

green smoothie (blueberries,strawberries,pear and spinach with water)
coffee afterwards
pepperette for snack
lunch turkey sammich (avocado, havarti, turkey, S&P, tomato and bit of mayo)
BAD supper: McDonald's (I didn't want but Gibby did...what can I say...he's just a kid)
2 big herbal teas today
another turkey sammich (same)
and another tea and I am done for today

BAD menu :( (tho the turkey sammiches were good)...I love 'em with avocado

31 Days of PKD Challenges: #28

Double or even triple the impact of your gift to the PKD Foundation! Find out if your employer sponsors an employee matching gift program. Learn more at pkdcure.org/matching-gifts.

Menu

Tying to get back on track.

Slept late so had coffee and a granola bar (mini)-100 calories
and then an apple for snack
at lunch just a couple of pepperettes and an herbal tea
for supper we had Applewood Smoked Salmon with Herbs, rice and a southwestern ranch salad.
for my evening snack I will eat some more fruit...maybe a couple of cuties (clementines)
and will make myself a BIG tea...

31 Days of PKD Challenges: #27

Learn about our Accelerating Treatments to Patients (ATP) initiative, aimed at speeding up development of treatments that could slow or stop progression of PKD
Details: pkdcure.org/research/accelerating-treatments-to-patients.

31 Days of PKD Challenges: #26

PKD Challenge Day 26: Write to your local congressman and ask for their support of PKD! You can find tips on contacting your congressman at www.pkdcure.org/advocate/advocacy-toolbox.

Bonus: Become a PKD Champion and join us at our 6th Annual United on the Hill. Learn more at www.pkdcure.org/united-on-the-hill.

31 Days of PKD Challenges: #25

Support finding treatments and a cure for PKD by giving $10 through our text-to-donate program. 
All you have to do is text PKDCURE to 20222

31 Days of PKD Challenges: #24

Visit the youtube page and watch a video to educate yourself.
Youtube

31 Days of PKD challenges: #23

Join a local PKD chapter and share your passion to end this disease.
Find a local chapter.

31 Days of PKD Challenges: #22

Check out the latest issue of PKD progress magazine.
Celebrating 30 years of PKD research.
Read HERE

31 Days of PKD Challenges: #21

Check out this blog: PKD Will Not Beat Me

31 Days of PKD Challenges: #20

It is advisable for PKD patients to limit their caffeine.
Try to go caffeine free today....oops already had my morning coffee...will try tomorrow! ;)

31 Days of PKD challenges: #19

Join the 2013 Kidney Month Campaign.
Make your donation: http://pkdcure.org/donate/2013-kidney-month

31 Days of PKD Challenges: #18

Tweet your fave celebrity and ask for support to end PKD.
I tweeted Queen Latifah! ;)...and LLCoolJ :)

31 Days of PKD Challenges: #17

Looking to get ridof a car? Donate it and proceeds go to PKD Foundation.
Read More Here: Vehicle Donation

31 Days of PKD Challenges: #16

Did you know that an average kidney is the size of a human fist, but the average polycystic kidney can get as big as a NFL football and can weigh between 20 to 30 pounds?

31 Days of PKD Challenges: #15

Oops I missed yesterday!
Join the  cause and Walk for PKD!

Clinic

Ok...everybody is happy...sugars great, BP good, lost 10 pounds.
Appt in April to have education session about PD and HEMO and make the decision which is more appropriate for me. Doing very well right now though and hopeful can keep it up for awhile.
Saw Dr. Lam today...haven't seen him for awhile...still a joker lol but he's happy with all my levels. Go back in June...in meantime keep up the good work! ;)
Yayyyyyyyyy! RELIEF!

31 Days of PKD Challenges: #14

Happy World Kidney Day!
If you have one wear a PKD tshirt today and educate someone who doesn't know what it is.
I don't actually own one but I have a graphic to bog post:

Purchase @

Zazzle

Other designs @

Cafepress

31 Days of PKD Challenges: #13

Have you made a Dr.appointment lately or had a visit? (Make one today!)
Why YES,I have!
Saw Dr. MacFadyen yesterday (diabetic Dr.)
and have a clinic visit also tomorrow! Busy health week!!

31 Days of PKD Challenges: #12

Be part of finding a treatment for PKD by participating in clinical trials.
Read more: http://www.pkdcure.org/research/clinical-trials/awareness

31 Days of PKD Challenges: #11

PKD patients should have blood pressure lower that 130/80.
Mine today was 126/79 pulse 77

Get yours checked in the machine at the local pharmacy!

31 Days of PKD Challenges: #10

Make a kidney friendly recipe.
I've made this salad before both for myself and for friends at a summer party and it was easy, delicious and well received! Try it! ;)
Chicken Fruit Salad - Kidney-Friendly Recipes - DaVita

Check out the blog: PKD Health Notes for more recipes!

31 Days of PKD Challenges: #9

Learn about ARPKD.
http://www.pkdcure.org/learn/arpkd

31 Days of PKD Challenges: #8

‎"31 Days of PKD Challenges #8: Run for PKD
http://www.pkdcure.org/events/run-for-pkd"

31 Days of PKD Challenges: #7

‎"31 Days of PKD challenges #7: Organ Donation
Go to: http://donatelife.net/ or in Canada: http://www.kidney.ca/Page.aspx?pid=372
and look into it."

31 Days of PKD Challenges: #5

PKD Challenge Day 5: If you’re on Twitter, tweet about PKD today and help us make it a trending topic! Don’t forget to use #endPKD in your tweets.

31 Days of PKD Challenges: #4

PKD Challenge Day 4: People with PKD are encouraged to drink lots of water - at least 64 ounces a day! Challenge yourself to drink the full 64 ounces today.

31 Days of PKD Challenges: #3

PKD Challenge Day 3: Sign up for PKDnews
http://pkdcure.org/pkdnews

31 Days of PKD Challenges: #2

PKD Challenge Day 2: Use our special Kidney Month photos as your Facebook and Twitter cover photos and profile pictures. Bonus: Keep them up all month long to raise PKD awareness!

You can find all the photos at www.pkdcure.org/31PKDchallenges

31 Days of PKD Challenges: #1

It's National Kidney Month - which means it's the first day of our 2nd Annual 31 Days of PKD Challenges!

PKD Challenge Day 1: GET EDUCATED! Our website offers great educational resources. Learn everything you need to know about polycystic kidney disease atwww.pkdcure.org/learn.

31 Days of PKD Challenges: #6 and BONUS: My Story

31 Days of PKD challenges #6: Educate someone.

Quick version of my story for PKD challenge.

Check out: http://www.pkdcure.org/hope

Polycystic kidney disease is a hereditary disease where cysts grow on your kidneys and cause damage and eventually kidney failure.

From the time I was tested at 21 I already had too many cysts for them to count in varying sizes on BOTH kidneys. I have spent a lifetime KNOWING eventually the shit would hit the fan and things would be not so good. Kidney failure, dialysis, eventual death (early I mean). I've made peace with not getting OLD. I DO try to do the things I should and am told to do to prolong the health of my kidneys and unfortunately I am not so good at some of them. There are MANY factors involved in it and what's left behind is the knowledge and understanding that I do the BEST I can with who I am, where I am and what I've got. I think that's all a person can do. The point is I FIGHT. In my own way, using my own strengths. It is a challenge but it is NOT over till the fat lady sings...and I AIN'T singing!! LOL

I want to get through it with grace and dignity. That is all.

This is a disease that runs in families. My grandmother had it and also her brothers. My father had it and two of his brothers. I hope that my children will be lucky enough to never have to deal with it but the older two are aware and the younger one has to live through it with me so he will see things I'd rather he didn't but we will have to talk about it if and when he wants to know. I would rather shelter him from the knowledge that it could happen to him so that he can build a life without a shadow hanging over his head. The older two are healthy and active and both work hard to stay that way so I HOPE and cross my fingers it will be enough.

IF I had known more or understood more when I was younger perhaps I would have felt different, been different, done different but it is water under the bridge now. I can't go backwards. I can't change yesterday. All I can do is work hard today and hope for tomorrow.

This is the hand I was dealt. So I do my best to handle it.

For more detailed information: Wikipedia

FB Status Yesterday

I am happy when I'm going along doing my thing...being mindful of my yes/no's and not going too far offside...sugar's good, BP good, mentally ok, feeling not too bad, not too tired, no gout flare ups (pain) for ages, emotions under control...NO stress at the moment, can focus on some things, AND hope for tomorrow...for a little wee bit of time I can delude myself that I am "normal"...unfortunately it is more than probable that the sicko lunatic and the disease living inside of me will wrestle for control and WIN...they battle me a lot. I WANT to be positive. I want to move forward. I want to enjoy the parts of my life that I CAN but, MOST of all things I just want to LIVE my life with the most dignity possible in the midst of insanity, illness and even my own weakness and negative attitude. I AM learning and growing and I don't mind saying that it is DAMN hard some days...my point is simply to share the expression of ONE "sick" person's journey so you can possibly understand...a LOT of what is happening to me is INSIDE and invisible to you. That doesn't mean it doesn't matter. If YOU are aware of someone or are related to someone going through such a journey...take one small moment of your time to let them know they are not alone or forgotten. They don't want you to FIX them...not all of them anyway...they just want to know you are there and that you do care. It can shine a light into the darkness. You have NO idea how bright that little light shining can be. (I am NOT asking for this myself...I am using MY words to share and hopefully inspire someone...anyone to open their eyes for someone else's NEED...I have words...many people do NOT.) ON my UP days I HAVE to shine a light. This is MY candle...please share the flame. ~KDB

Shine your OWN light into the darkness and pay it forward. xo

Bracelet ~02/28/2013

Received my medic alert bracelet FINALLY...

was a bit big (apparently my boy wrists have shrunk a bit)...

but I fixed it and added a little angel to the dangle part! ;)

Books to READ

See what helpful hints I can find with these books! ;)

Aranesp 02/21/2013

Another shot today and I'm managing to REMEMBER to take them so its all good.

Aranesp 02/07/2013

Yet another shot.
Tested BP today too and had a perfect 120/80.
Sugars have been very good again too so maybe I will stay here for awhile and not progress again too much further for awhile.
Wish me luck! ;)

Tattoo

This is the next tattoo I want with the name Mojirayo.

Unfortunately I wanted to have it put on my right wrist 

and I might have to get a fistula in that arm  soon.

I either have to give up on it or decide on a different spot for it...OR...

put it there anyway and deal with it looking awful when my fistula is made.

I WILL  have the tattoo and I will NOT allow this disease to take every joy and choice from me.

Aranesp~01/24/2013

Another shot taken today.
I'm pretty sure these shots are helping my energy levels but today I a not feeling well and so I had a nap. Hopefully, now that I've eaten some dinner I will feel better.

Recipes

Searching, saving and planning to try some new recipes again soon.
I don't really want to share every menu when most of the time I am eating things that are NOT good for me so I haven't posted a menu for a long while because I've been struggling and off schedule for a long time. I really hope to get back on track again soon!!!

Stress

Stressing and stressing and stressing and trying to forget by reading, reading, reading...thankfully the story has captured my attention very well and distracts me somewhat from the stress.
I don't know what to do so I will just BREATH...and READ.

Family Menu

For the good of all our health hubby has agreed to change our eating habits yet again to much healthier fare. This will include his and the kids lunches!
So we will have to discuss and figure out what will work for their lunches but, here is hoping we can remove all the CRAP out of our kitchen, our house and our lives and make improvements slowly but surely!! ;) YAY!!!

Aranesp~01/10/2013

I think taking a shot every two weeks now is actually helping my energy levels!
I haven't been sleeping as much even tho I have been sick with a cold for a week or so.
So THAT I guess is a positive! ;)