Aranesp~12/27/2012

Logging another shot.
I hope taking them every two weeks now will help because I'm SOOO tired lately!
Received my letter that I AM and DO meet the requirements of disabled and Ill receive a call from Leah soon...that will be a help and somewhat of a relief. Thank GOD!

Family Meeting

My daughter thinks we should have a family meeting to discuss my issues because my mom told her how serious things are and she wants to have an option to voice her opinion as well as her brothers.
I agreed to it but I'm NOT doing it till after new Year's because I'm enjoying having her home and spending time with all of them together.
We'll be baking cookies for Christmas Eve and spending the whole day together for Christmas too.
I want to enjoy the holiday without stress, worry and emotions. I don't know what to do next and I don't know if I'm ready to explain or talk about it to my children....
Ughhhhhh
so...Christmas...and...Hakuna Matata!

Aranesp~12/13/2012

Took my shot. Forgot to post that day but I did NOT forget to take it! LOL
Keeping track here at least helps me remember the dates when I have taken one so I can remember the NEXT one to come.

Feel Better

I have three months till next visit to try and lose 10 pounds so I can have a buried tube put in for PD dialysis and then will be ready for it when it is needed or if I crash from sickness and lose my kidneys all of a sudden.
I'm happier knowing that I CAN do PD because I think it will be the least intrusive and easier to manage once I know what I have to do and get everything figured out.
I didn't really realize how much I DON'T want a fistula and hemo dialysis until I was sure that I don't HAVE to have it. WOW!
I hope it is still a long way away from me but I'm ready to face the journey if it is not.
Dialysis will be ok.
I CAN do this!!

From now on Aranesp will be taken every 2 weeks. ;)

Stressing

Clinic tomorrow morning and as usual I'm worrying and stressing.
I'm not really thrilled with the idea of a fistula and it's the next thing on the list (on the advice of my diabetic nurse)...I don't know what to do, what to decide but I guess I'm going to need to have a chat with the Dr. about all of it. Bite the bullet again and face up to these things that I CANNOT avoid. :(

Bloodwork

Tired again today.
Done my bloodwork...3 pokes later, and 2 bruises :S bahhhhhhhhh!!!
Hate bloodwork...but the silver lining is I don't pass out at the site of blood and I'm not afraid of needles so it really is no big deal that most of the techs and nurses CAN'T get my blood on the first try. I think this whole ordeal of my life is meant to teach me PATIENCE and most of the time I don't think I'm very good at it. HOWEVER, I will simply endure...not much choice eh? ;)

Tired

Having a cold, tired day today.
Trying to get my menu sorted and organized still.
Tomorrow our Santa's Choice order comes so I'll have to see what I can do with it to keep things going well. Idea for a book on living with pkd percolating in my head and maybe a companion cookbook. I'm also contemplating a secondary companion book of kidney/diabetes friendly smoothies. ALL books from the perspective of a person living and struggling with these diseases.
To share the things I've been learning. Then maybe there is some reason and purpose for enduring.

Aranesp

Another shot taken.
I'm sleepy today. I've been sleepy every day for a week or so now.
I keep needing naps!
Hope its not a bad sign...tho I have been extra busy making Christmas presents so maybe I'm just tired from that! LOL

Now I Wait

Phew that was a busy, busy week!
Tues. afternoon our appt. at disability. Wed. morning an appt. with Dr. to sign my papers.
Thurs. give the Dr. my portion of the papers. All put in envelope and I hope mailed on Fri. like they told me it would be. And NOW I wait to see if I am going to get help.
I HOPE it is a yes and it doesn't take 6 months like they say it can.
I have had a lot of stress and I'm hoping it is done for awhile now! I napped almost every day this week! I've also had headaches a lot. :(
Trying not to worry and just to accept that what will be, will be but I worry.
So I take a deep breath. AND I believe.

Had My Appointment

Had my appointment, got it all sorted and signed and got my package.
NEXT make appt. with Dr. and get him to sign my medical portion of application.
Calling tomorrow. Hopefully, can get in soon and get this DONE and in the works!

Tuesday

Tuesday hubby and I have an appointment...FINALLY.
I've only been waiting two and a half months now. :S
I didn't want to even do it. I tried to avoid it as long as possible but, the facts are the facts.
I need help.
So, cross fingers the appt. goes well and everything goes forward for me to receive disability help.
My medications just get more and more added trying to keep me in line and more and more expensive. Also, more dosages of insulin, and sooner or later I will also have to deal with dialysis of some sort.
I am trying hard not to be scared and worry about what's coming later.
What will be, will be.
I will face my decisions when they come and in the meantime try to stay positive and keep working on the things that I CAN do. No matter how difficult, no matter how frustrating, no matter how depressing, no matter whether or not I want to give up or not....just KEEP ON!
KEEP trying.

Another Shot

Aranesp. Keeping track.
Maybe didn't get it warm enough today it kind of hurt a bit this time.
But...it is done for another 3 weeks! ;)

Proper Menu

It's been a long time since I could work on proper menus for the week because we ran into some money issues from hubby's lack of work back in August and got behind.
We're still not caught up. I HAVE applied for disability and I'm waiting for an appointment so I can
actually send the information and get my doctor to sign for me.
If I don't get my appointment soon I have an appointment next week with a social worker who will advocate for me and try to hurry the process.
It was hard enough to admit and accept and ASK for help in the first place and what I get is hassle and SLOW process? I'm frustrated for sure. I NEED the help and if I don't get it before hubby gets laid off for the year I won't get it at all. :(
At least I know my diabetic nurse can help me with insulin in case of emergency. Thank GOD for that!
I DON'T want to know what happens when I stop taking it!!
Anyway, from now on I'm just going to keep track of what I'm eating no matter how crappy it is.
I will do the best I can and n the meantime hope for better than this.

How to eat, drink, learn, or try something new

"It is always good to try something new even if you don't keep up with it because every new thing expands your knowledge base."

How I did it: We started a Tai Chi class. I was interested and so we decided to try it but I was not LOVING it so gave it up. If it is not something I LOVE then I know I am not going to commit or keep doing it over the long term.

It took me 25 days.

It made me

See more progress on: Eat, drink, learn, or try something new

Aranesp

Just keeping track of my shot. I'm pretty sure I missed the last one but I've taken this one and I'm back on track. Three weeks from now I'll do it again. REFERENCE point. ;)

How to cook something new once a month

"I learned to try one or two new things a week and stick with well known things the rest of the time."

How I did it: It is difficult to change an entire lifestyle and takes TIME. I just searched out recipes to try and committed to trying one or two of them a week. Many times I didn't like them but I also found many awesome cook-again recipes that we ALL loved!

Lessons & tips: Start small and work up to the fancier, more difficult recipes. Added stress is not helpful in the long run.

It took me 30 days.

It made me frustrated

See more progress on: cook something new once a month

How to take Time to Read!

"I realized how much I miss reading a good story and how inspired I am by them!"

How I did it: Decided at the times when I was not feeling well or had no energy to spend that it would become a reading day. In this way I get the rest I need and I catch up on some good stories!

It took me 30 days.

It made me happy

See more progress on: Take Time to Read!

New Meds

Picked up my new meds today. Called Trajenta.
HOPE it will help. Trying to avoid mealtime insulin and still help lower sugars but NOT harm the kidneys more. Wish me luck!!

KC Clinic

Back from Kidney Care Clinic.
Things to work on, both good and bad. Sugars are better...keep it up.
Potassium is high. Try to keep under 3000mg per day intake and will improve.
Also keep sodium under 1500mg per day.
Otherwise keep doing what I'm doing.
Stress.Up and down, back and forth...yoyo!!

Cheese

Living on cheese slice sandwiches. NOT really a fabulous choice but they only cost $2 as opposed to all the other cheeses being $4-$5...and I'd eat better but don't even get me started...I don't have meds either that I need...hopefully I'm picking them up tomorrow...but...I need insulin tomorrow so they may have to wait a week again...I don't have ENOUGH money to pay for meds and school and food and bills!!!!!!!

Another Shot

One more down...one million or more to go...lol.
I am making peace with giving myself shots.
I want to live and if this is the way how then I guess I will do it.

No Menus

Obviously when I don't post my menu for the week you can be sure it's been a rough week for whatever reason. Usually the reason is money...lack of, too many bills and getting by with what we've got or just extra other things we've had to pay out and the menu falls by the wayside.
I'm trying to get better about this but generally managing my menu is an ongoing process and not yet a weekly HABIT.
SO...I'll get a proper menu planned as soon as I can and get back on track.
This week I have been bad though because I've made french fries (which I LOVE and cannot give up so often crave) and my son and I made Jello chocolate pudding and chocolate chip cookies (which really is a rarity around here because even though I LOVE cookies I rarely make them OR even buy them. Except maybe for arrowroot cookies or tea biscuits sometimes.
My real problem is SALT! :( but I AM working on these issues.
EVERY new day is another day to do better!

Gout

Foot starting again but I've been drinking more water, eating watermelon and cucumber and today I had a smoothie and it is feeling better already so I guess I'm getting the things I need to do under control somewhat but my sugars are not right and I don't really know what else to be doing to fix them other than more exercise so I guess I gotta REALLY work hard on that part.

Shot

Taken my third shot of Aranesp today.
I don't think I'm doing a great job of keeping my sugars under control tho I keep trying but I'm SO bad at regular schedules!!

Dinner Menu~Week of Aug. 12-18/2012

• Sun.- Lasagna and Garlic Bread

         (not the best choice for me but sometimes I have to please the boys too!)

• Mon.- Lemon Garlic Tilapia, Asian Salad, Roasted Veggies 
• Tues.- Apple Pork Chops and Stuffing (Davita recipe), Rice and Salad
• Wed.- Healthy Ground Chicken Meatloaf, Mashed Potatoes and Gravy (for the boys) and Green Beans
• Thurs.- leftovers
• Fri.- dinner OUT! (our summer treat...maybe Chinese this week) 
• Sat.- Eggplant Spicy Sausage Stew

Lunches- sandwiches (turkey and havarti with tomato), lemon chicken (Michaelinas), beef pot pie

Snacks- blueberries, raspberries, apples, watermelon, veggie bowl, crackers

Getting Back on Track!

I have been seriously slacking on the menu lately and I'm feeling crappy both because I'm off track physically but also mentally. It's hard to plan and always stick to it but I'm finding that I do MUCH better when I actually keep a menu list and stick to it for the week.
I will be making this week's menu shortly!

Aranesp

Hmmm...took my second shot today and I guess I can handle it.
Had to wash out a mayo bottle to hold the needle until I can take back to clinic and have them dispose of it. But it's not that bad.
I guess I just have to do what I have to do to help my body function.
Keep on keepin' on!!

Dinner Menu~Week of July 22-28/2012

Sun.~ Steak, baked potato, grilled corn on the cob.
Mon.~ salad...too hot for food (32 degrees C)
Tues.~ turkey burgers (mine with relish and lettuce)
Wed.~ tortellini meatball soup (delicious!)
Thurs.~ leftovers of whatever is in fridge ;)
Fri.~ OUT! (sometimes bad, sometimes salad)
Sat.~ BBQ with Angie and Dave

Lunches~ BAD...french fries, McDonald's
(NOT a usual week but took my kid out twice this week-SUMMER!), also crackers, cheese and salami, salads
Snacks~ crackers, cheese curds, salami, fruit (fresh and smoothies)

Learning Tai Chi

I have always wanted to learn Tai Chi and tonight, hubby, the kid and I began our first class.
How on earth I am ever going to remember:

• Parting the Wild Horse's Mane
• Playing the Guitar
• Repulse Monkey
• Hold the Ball
• Grasp the Bird's Tail
• Cloud Hands
• Kicks
• Carry Tiger Over the Mountain
• Snake Creeps Through the Grass
• turns and other various movements!

I've already forgotten my homework and been searching the internet for images to remind me of it!

This one in particular makes me smile and I enjoy it!

And hopefully this one will help me do my homework all week! :)

Trying to Stay Positive

Things are getting out of whack...obviously the disease is progressing...my blood count is low so I have begun taking a hormone shot in addition to insulin to help with anemia...at least it is only once every 3 weeks...I begin a new BP med because my BP is elevated and has been for awhile now...my sugars are high so I have promised to KEEP trying to eat right and get more exercise and see in 2 months if it is helping at all otherwise I'll be beginning meal time insulin 4 times a day as well! :(
My gout meds have been lowered again so I MUST keep on track with fluid intake or that is going to HURT me...
I have a NEW Dr. he seems pleasant and competent but now I'll have to get used to him!

My creatinine is high and my kidney function has dropped again...when this started I was at 37% I believe and now I am at 22%...no wonder I get tired so fast!

What worries me quite a lot is that at 15% usually it's time for dialysis. :(

Yesterday I was in shock and VERY blue and distressed but today I am trying to remember that i DID lose 5 pounds so the diet changes and beginning exercises ARE working even if it is SLOW.
So I MUST and WILL keep on trying to eat right and get more active and keep dialysis at bay for as long as possible.

I want to TRAVEL! So I better get my butt in gear and make that happen SOON!!

Pffffffff

...again with the feet!
I've been drinking water, water, water...and tea, tea, tea since yesterday.
Still hurt but since it was BOTH feet this morning and one seems better than the other now I guess I just have to KEEP drinking!!!!

I have gotten a whole bunch of writing and pages done the past two days though.
I guess there is some productivity to be had when you're laid up in bed resting with your feet up, waiting for the pain to get lost!! ;)

I'll be alright!

Doing OK

I've been doing alright the last few days...gout pain free...trying to stay hydrated with water and teas and sometimes juice and just trying to stay up.
It doesn't always work  because I'm frustrated and close to the edge sometimes but I am TRYING.
I AM fighting and HOPING and that is all I can do.

Hydrate, hydrate, hydrate!!

Ughhh...so much frustration in this business!
Been in the bed for 3 days with another bought of gout foot...let's face it my feet have not been the same since the full on attack I had back in Dec. but I am pretty sure the problem with me us dehydration for the most part. I need to DRINK more! I've been drinking water, herbal teas and eating grapes for 2 days now and a LOT and it definitely has improved the foot pain.
I have been checking my sugars as well and they are a little higher than usual so I'm concerned.
Next time...I'll be told I must take meal time insulin 4 times a day...this is NOT going to work for me and I'm VERY likely to end up hurting myself!
GRRRRRRRRRRRRRRR

Diet

Ooooh the frustration!
However, I KEEP trying to get it right!
More chicken and fish, less red meat...more fruits and veggies, less cheese....more water, NO caffeine...HARD HARD HARD!!!!
I won't give up because I need to FIGHT every day to be stronger and healthier in as many ways as possible!! Mentally, emotionally and physically!
NEVER GIVE UP!

Feet Again

It never really seems to go away.
I'm trying to drink more water and I'm trying to eat fruit and veggies but it's such a long slow process and I get frustrated and give up. :(
It is so HARD to make all these changes!
I have to keep trying tho...giving up is NOT an option!

Waiting

Just waiting for results of the bloodwork and whether or not the Dr. will refill my cholesterol meds.
Still need to make an appt. to go to Diabetic Clinic and soon enough it'll be Kidney Care Clinic again...
I dunno....trying to eat and exercise and having a difficult time. Baby steps, one day at a time...doing my best...

Exercise

Walked to town today and had breakfast with Melli and Steff and picked up my bloodwork requisition...fasting Sunday night for bloodwork Monday morning...
I am tired, tired now and I'm heading to bed but the positive is that I DID get some good exercise today!! ;)

Fasting Bloodwork!

Visit tomorrow to Dr. office to pick up a requisition for bloodwork.
I HATE bloodwork and to top it off it is a fasting one AGAIN too!
GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR

Visit with the Dr.

Doctor's visit yesterday and the introduction of a new pill (if it is covered).
If not and/or it doesn't work then I may have to take more insulin 4x a day. I really don't want that!
Otherwise my daily sugars were pretty good...well as many as I had to show...MUST get better at tracking them!

Green Tea/ Lemon/ Cayenne Pepper

Tried green tea/lemon/cayenne pepper today and it was AWFUL. I couldn't do it. :( Maybe I got too much spice and made it too strong but I don't think I'll be trying it again anytime soon. I'll stick with my lemon water or green tea with lemon and hope the benefits will be good from them.
I don't mind the lemon water at all.
So far I'm managing about 6 glasses of water a day tho I am trying for 8 but I can't quite seem to get there. :(

Swollen Feet

Not doing very well keeping track of my food and water in tracker. :(
Also worrying myself because for the last three or four days now my feet have been swelling. It is less than it was the first day but still it feels very uncomfortable and has me a bit stressed and worried.
Thankfully I will see the Dr. tomorrow and see what's going to happen next.
Otherwise I have been searching out quotes today and trying to keep myself hopeful.
I am a worrywart so learning NOT to stress myself is very difficult sometimes. I think I am getting better at it but yikes!!

Lemon Water

Began drinking lemon water this morning. 1/8 wedge of lemon in hot water.
Supposedly it is very healthy so for awhile it will be my morning drink.
I have given up coffee except once in awhile and I'm trying to only drink decaf or herbal teas.
I also had green tea with lemon at lunch time and either way is acceptable and not gross at all lol!

Nutrition Values

Inserting my daily values of nutritional info into a tracker in SparkPeople.
Hopefully it will help me to know how much  or how little of needed nutrients I am getting every day and my health care team will appreciate having a record that we can find target areas to work on and do better next time!!

Beginning

Blogging about my challenges with gout, type 2 diabetes and polycystic kidney disease and hoping it will get easier to keep track of my efforts both good and even bad.
Keeping track will be good for my health care team as well as myself so here begins my concerted effort at keeping on top of all that I must learn to master in order to stay as healthy as I can for as long as I can.
Wish me luck! I NEED it!!