Thursday, April 30, 2015

Disney 2015 - Day 3

Better late than never! ;)

One of the things that I love about Disney are all the things to do. Not just the parks, but the many other fun things that you can do when at the most magical place on earth.  The last time we went to Disney, we had full days at all the parks, and no time for anything else.  That really didn't work for my family. My kids like their downtime.  So on day three, we made plans to do something totally different.  My parents, sister, and her kids chose to rent a car and drive to Clearwater to see a famous dolphin and check out the beach.  My family stayed behind and made a day of checking out the other things Disney has to offer.  After a relaxing morning and breakfast (it was nice not having to rush to get to the bus!), we walked down the path to Port Orleans - Riverside, the other resort nearby. 





We checked out the pool, although it was still a little cool to swim.  The kids played at the playground, then we headed back to our side.  I really wanted to check out the Animal Kingdom resort, so we hopped on a bus to head over there. We got off at the Animal Kingdom, then onto another bus that took us to the resort.

It was amazing! It was lunch time, so first we ate at the quick service restaurant in the hotel. Then of course, my kids had to check out the playground.  It was a little small for them, but they never let that stop them.






Afterwards, we walked to the Savannah. That's right - a real savannah on the resort! It was cool to see the animals up close. There was even a staff member there to answer questions.






We also explored the hotel before hopping on the bus to take us to Downtown Disney.





When we finally got back to our resort, it was time for the pool!  There was an awesome water slide which the kids loved.  And as long as we were right at the bottom to catch the twins, Keira and Colin loved it as well.  Life jackets are provided which was nice too.  So no pictures of us in the pool since we were with the kids the whole time. After we were done, I did let them slide into the hot tub for a few minutes, and then made Daddy take the kids back to the room for snacks, while I had a few peaceful minutes alone. ;)

After lounging and watching some cartoons (they loved the Disney short animations that played on one of the channels), we walked down to the the campfire! That's right - they serve s'mores before supper!




Then we walked back to the Riverside resort for dinner.  Options were pretty much the same for the kids, so it wasn't that big of a deal.  The kids were really looking forward to what came after supper.

A movie in the park!

Towels are provided to lay out on, so we grabbed a few and spread out. Keith even surprised me with a cool drink from the bar. :)




Someone had to do some work while on vacation.
All in all, it was a great day! A nice relaxing break to the busyness of the trip.  I know it's hard to plan in downtime, especially when you spend so much money to do to Disney World and want to really get your money's worth, but this special, non-scheduled day was one of my favorite memories.

Wednesday, April 29, 2015

Book Review: Gone But Not Forgotten


Synopsis:  
A mother’s work is never done.
Not while Sunny has a ghost of a chance.

Her sister and brother-in-law, Honey and Bert, are good people, no worries. Sunny’s twins will have a loving home with them in Mossy Creek, a warm-hearted small town in the mountains of Georgia. But Sunny, a San Francisco voiceover artist before the accident that killed her and her husband, has bad memories of Honey and Bert’s unpredictable, autistic son, Jeremy. Will he harm her babies? Sunny’s not leaving until she’s certain they’re safe.


My Review:

This was a short, but very sweet read. Not what I would normally pick up, but I am a big fan of Sabrina Jeffries.

Sunny, mother of twins, passed away in an accident. But she cannot let go of her children until she knows they are safe. Her memories of her autistic nephew, Jeremy, are from years before, and she is afraid for what the future will bring as her sister and brother-in-law take on her twins to raise. Jeremy was so unpredictable in Sunny's mind, but things have changed. Can Sunny open herself up enough to see the real person inside?

This is one of those stories that makes you cry, I will warn you now. But the take-away is worth it. I definitely recommend this one! Ms. Jeffries truly writes from the heart on this one!

Find it on Amazon here!

Tuesday, April 28, 2015

Nobody Puts Baby in the Corner


I haven't had a girls' night out in forever. Much of my life the past few months have been focused on my health, as well as some school issues we are having with one of the twins. Work is especially busy this time of year. A couple of weeks ago, I saw that our local movie theater was going to be showing Dirty Dancing, so I texted my sister and we made plans to go with another friend of ours.

The theater is one that does dinner and a movie, in really comfy leather chairs. However, this was part of their classic movie series, so we were seated in the special event screening room. I assume it's what they use to show staff new movies: an intimate room with 8 or so big leather couches. I tried to take a picture, but this swagalicious girl kept photobombing me.

#swag #yolo #icky
(I don't know what those hashtags mean,
but my 10 year old niece uses them a lot,
so we (her mom and I) like to bug her by pretending to be cool.)


There was a whole wall dedicated to Marilyn Monroe:






And of course the food was great! I haven't had movie popcorn or cherry coke since I got sick, so I treated myself. :) 

Eye candy - the cute movie projectionist (not sure of his real title) had an awesome Irish accent.

Super fun night had by all!

Friday, April 10, 2015

I'm not bipolar, it's the steroids!


After I received my kidney failure news, my doctor reached out to a colleague at Rush University in Chicago.  This was a specialist in the field of nephrology.  The doctor advised to not use steroids, just go straight to the transplant process.  My doctor seemed disappointed at this, as he thought steroids could help.  I asked if we could try a low dose anyway.  "Low dose" in this case is 40 mg/day.  That's a lot more than you get if your regular doc gives you a steroid script for a sinus infection or inflammation.  It's been a little over a month on predinisone.  Life is tough on it. Don't get me wrong, I am super thankful for the little white pills I take each morning.  They've made some inflammation go down, and my lab work go up. I will take it. But the side effects are a PIA.  

Sleep, or lack thereof
I don't sleep. In fact, I haven't slept in 3 days.  Well, ok I am being a little over-dramatic. I've had roughly 8 hours of sleep in the past 36 hours.  And today I called in sick (not that I have sick time to take at work anymore), so I was able to get in another 2.5 hours.  The problem is that even with cutting out caffeine a month ago, the prednisone still gives me plenty of energy! In fact, on Monday, I had the day off.  Keith woke up at 4 a.m. to go out and train. The alarm woke me up (I had previously been awake from 12-3ish), and I couldn't fall back to sleep. So I finally got out of bed at 5.  I didn't realize until about 9 a.m. that I hadn't even sat down since I got up.  I cleaned the kitchen, reorganized the cupboards, did laundry, changed all the sheets on the beds, fed the kids, played with the kids.... and suddenly thought, "Oh shit, I should probably make myself sit down and rest for a bit." At night, I lie in bed staring into the dark.  I could get up and do things, but I am trying to allow my body to rest as much as possible. 

Deep Thoughts
Steroids can cause anxiety according to the paper work. It's not exactly that for me.... it's more I can't shut my brain off.  I replay the day, over and over. People who normally annoyed me pre-medicine annoy me ten times worse now.  A comment that might not have bothered me before rubs me the wrong way and I obsess on it.  I think of all the preparation I need to do before surgery. Keith doesn't know how to wash the school uniforms, I better write out directions, what should I include, what happens if I have it while the kids are in school, how will they adjust, Colin's already having issues, who will take care of them while Keith and my mom are in the city with me for days (if my sister-in-law donates to me, my mother-in-law will obviously be at the hospital caring for her), what if none of the donors work out in time, what if I need dialysis, crap, I don't want a central line installed in my chest for 6 weeks for that.... you get the idea. That's my brain every day from 2 a.m. to whenever I get out of bed. 

I could eat a horse!
Steroids increase your appetite. BIG time. I am always hungry. But in an effort to help my kidneys last, I've changed my diet. No more processed foods, McDonald's cokes, cheese, ice cream, or red meat for me.  I'm about 98% clean eating, with the occasional cheat to make me feel better. ;)  After a procedure a couple weeks ago, I treated myself to a kid-sized coke. Mmmmmmmmm..............  I eat a little chocolate every few days. (In fact, I just received some amazing chocolate from Switzerland that is awesome!).  I have to keep my iron up, so I eat one cheeseburger a week. But the rest of the time, my diet is pretty boring by my standards.  Plain grilled chicken, rice, steamed veggies, eggs, fruit, plain popcorn, and a couple of plain-jane cereals that are iron-fortified (which btw, my iron went up quite a bit which helps with me not feeling so tired all the time).  My body doesn't process protein the same way as before, so I can't eat too much.  The steroids have caused my blood pressure to run pretty high, so I am constantly checking sodium facts. And that's in pretty much everything. 

Feelings
I was born a pretty positive person. And after all the shock of this wore off, I remain that positive person today. But I am not going to lie, most things annoy me pretty easily thanks to the steroids. The paper work refers to it as "mood swings".  Women, think PMS but all the time.  Not to mention, my body is exhausted from lack of sleep and my stomach is always growling (did you know that I do not actually like chicken? I'm probably the only person in the world...). So like I said earlier, if you annoyed me before all this, you annoy me even more. And I know deep down it's NOT your fault. So I try really really hard to behave and watch myself. But sometimes it doesn't always work. And I may snap at you without even realizing it. And if you make a comment without realizing it, something along the lines about my parenting and that you feel I favor one kid over the other, I'm going to lay in bed and cry my heart out over it. 

There is no way to tell how long my kidneys will last once the steroids stop. Or if the steroids will even continue to work after another month or two. But they gave me extra time, and despite all the side effects, I'll take them as long as my doctor feels my body can handle them (which is probably another 2 months). The longer I can hold off the transplant without dialysis, the longer the new kidney will add to my life.  Base time frame is 12 years from transplant before the new kidney could fail and I start this all over again.  The average time with a living donor is 15-20 years, but the transplant surgeon said 12 years is the official number they go with. Everything else is a bonus. I've got three college graduations, (hopefully) three weddings, and grandchildren to plan for. I need all the time I can get. ♥

Friday, April 3, 2015

HOPE



31 one days ago, I read my test results on my phone app. Then I stood in my kitchen and cried soft tears as my brain registered "GFR = 12".  Under 15 is bad, bad, bad.  12 gets you a call from a specialist at big-name Chicago hospital whose brash bedside manner may not be the best fit for most people.

"Shit, you are still a kid," he said when I told him my age. "Get in and get a transplant now."

His next piece of advice was softer. "Be pro-active. Call the hospital now, and then call back to follow-up. Don't wait for them."  He even gave me his personal email if I had additional questions. 

So I did as he advised.  I called. When they told me they couldn't see me until May 22, I asked to be put on a wait list if someone cancelled.  The man was surprised - they don't do that sort of thing. But I didn't let that stop me.

I received all the paperwork in the mail. I found my possible donors.  A few of them faxed or mailed the forms in immediately. I faxed all my paperwork. I had my doctor release all medical records to the transplant center. They requested an EKG, chest X-ray, a couple more invasive type tests/procedures.  I did everything within the week of their requests.

I bought myself a binder (green for kidney disease.... and hope, in my mind). I'm super-organized to the point of OCD. Nutrition is a big thing with kidney disease. I cut out pop, chocolate, ice cream, cheese, wine, and red meat... my six basic food groups.  I lost six pounds from stress and the fact that most of my meals are chicken, rice and steamed veggies. I lay in bed every night from 2 a.m. to 5 a.m. because the steroids make it hard to sleep. I stress that the upcoming blood work may show that I need to start dialysis. Do you know they insert a central line into my chest to do that? And install a fistula into my body as well? 

On Friday, perhaps impressed with my pro-activeness, the transplant center called and moved up my appointment to next week. "Is that too soon?" the man asked. "Hell no!" I say to myself. Politely, I responded, "That date works for my schedule. I will be there."

Yesterday I had my monthly blood work done.  I didn't realize until my 2 a.m. wake-up call that it was exactly a month from the day I received the bad news. My doctor, spending a vacation in Turkey, checked my labs from across the world and by 4 p.m., my hope was renewed.

GFR = 18.

It went up! My kidneys had been leaking a ton of protein. 3 times what they should be doing. (In fact, they shouldn't be leaking at all....)  The leak has been cut in half. The mega-dose of steroids that makes my face chubby and sleeping just a distant memory is working! No dialysis! Maybe I can treat myself to a kids' sized Coke from McDonalds.... ;)

But I want it known: while I know the steroids are working, none of this would be possible without God.  This is all Him.  I don't know why this is my cross to carry; I'm sure He has a reason.  I won't say that this never tested my faith, because it surely did. But regardless of the reason why, it happened. And I'm moving on, pulling through, and keeping on.

I have HOPE.


Hope dangles on a string
Like slow spinning redemption
Winding in and winding out
The shine of it has caught my eye

VINDICATED - Dashboard Confessional