Pixie's Birthday

Meg turned 6 the other day.

I celebrated it with her in the same hospital she came into the world in--- but for different reasons, I had a kidney infection.

My silly kidney did not stop us from having a party though, we had pizza, cake, and ice cream to mark the beginning of Pixie's 6th year.

I can't believe that she is 6.  Meg is joyful, impish, compassionate, welcoming, loving, goofy, smart, silly, and an amazing kid.  I am so thankful to be her mom and to have the privilege of watching her grow.

And she sure has grown!!! From a little 3 lb baby to a big girl now.....

relaxing in the NICU

Meghan just born

Home at last

6 years old-- at the same hospital she arrived in. 

Meghan loves her chickens, she cares for them and checks on them all the time.  She can calm them down and they let her pet them.  She loves her friends and enjoys playing with them and giving them things. She is clever figuring things out are a specialties.  I can't wait to see how grows up. 

Its been quiet around here huh?

Well--- sometimes no news is good news, sometimes no news is just busy, and sometimes, no news means my kidney is up to trickery and I am having hard time accepting it.

I got sick in June.  Like I do, I wished it away, figured that it was stress and it would get better.  I went to the doctor after a few days and he gave me antibiotics and all was well.  A few days later, I couldn't keep anything down.  Even the Zofran for nausea. So went to the ER. After waiting a year and a day the doc took one look at me and admitted me.  She seriously didn't even run labs first. 

7 days.  7 days on IV antibiotics to kick this infection.

Home for a few days. 

Then sick again. 


This time with scary bacteria.  My kidney does a go big or go home thing apparently-- and it goes big.

So now I am on antibiotics-- they make me very very tired and have some other fun side effects. Also learned today that I will need to investigate some funky stuff on my ovaries further.

But........

I am ok. My kids are great, having a wonderful summer. B is wonderful. life is beautiful

Right now, I can be awake for about 2 hours before I need to sleep again, so I will write more when I have more energy.

Positive change

Typically, I am awful about dealing with change. When we remodeled the kitchen when I was a child, I cried for weeks.  When my mom got braces, I cried.  When my mom cut her hair I cried. Schedule changes are rough for me too.

For the past few years pole had been my refuge. My escape hatch from a busy life.  When things were rough I could count on pole to spin me back into a good mood.  Then I got sick. Really sick. I had surgeries. And more surgeries. I didn't get all the way better, I would get marginally better, then get sick again.  I had another baby. I got sicker. More surgeries.

Finally, I am getting better.  I am healthier.  But when I started back on the pole- so much that I took for granted was so hard, and it was defeating. I know that I could do something-- at one point- but now I am not strong enough anymore.  For a few weeks this was killing me.  It was depressing. It was dragging me down.

But I noticed tonight- my body is changing again, it is getting stronger. My muscles are coming back.  My flexibility is coming back.  I am not where I was, but soon I will be, I have to keep working at it.

So I owe heaps of thanks to Kymba of Kymberly's Aerial Pole Art and Fitness for sticking with me and showing me the joy in pole again.  While helping me get my butt back in shape.

Pole Perfection

Imperfection, really. 

I love my time on the pole.  I have such a great time dancing how I am feeling. 

After having my kidney removed and a few complications, I have had to ease back into pole.  And I lost a lot of things. So many tricks that I have forgotten how to do, no longer have the flexibility to do, or no longer have the strength to do.  It has been a journey to get things back.

Recently, I have been working on getting my splits back.  Holy not flexible anymore!!

I will continue to work on it, maybe it will take baby steps but I will come back to fly.

Kidney update

It came to a nephrectomy.  A radical step. Even the procedure name has 'radical' in it- Radical Nephrectomy.

It was not a decision that I made easily.  It took 4 years an a lot of attempts to fix it to get here, and now it is done.

I was left with 2 options: an ileal ureter and nephrectomy. The ileal ureter had the potential to save my kidney but was not a guarantee. The nephrectomy would cost me a kidney but would be the end of that kidney's drama.

The ileal ureter is a really involved operation and I was not a candidate for laparoscopy meaning a long incision lots of pain and a long recovery. With my clotting disorder- this would be really risky.  A nephrectomy being much a much simpler procedure and much less pain and time on recovery.

The surgery was a week ago tomorrow- and there is significant pain- but I feel better than I did before.  I don't feel sick.  I already feel better now than I did for the past few months before surgery.  

Losing my kidney has not negatively impacted my total renal function at this point, and after getting in there, my doctor completely agreed that the kidney had to go. 

So now to recover and make up for lost time... what am I going to do with all the time NOT spent in doctors offices? 

This summer is going to be great-- it has to be

I am looking forward to the summer.

First, this winter has been long- seemingly interminable. I am ready for a change- of course when at the end of summer I'll be ready for a change too.

This summer will be the first summer in 4 years I have not had to worry about my kidney being a brat- because in a week, it will cease to exist.

I am going to water ski, swim, go tubing, run, pole dance, go to the park, go to the beach, maybe even go camping.  This year will be great.  Finally. After 4 years of stents, surgeries, recoveries, lots of meds, ER visits, this year will be great. I can't wait.

Why the lack of pole dancing??

Where have my pole dancing posts gone? Well, my kidney has been giving me such trouble, I have had to take a step back. 

It is so frustrating to work so hard and then have to take months off to heal from another surgery or infection.  My kidney is being removed soon and after that happens and I heal- look out pole world here I come.

This is not they way that I wanted things to turn out, but I have exhausted every option with my kidney it is about time to call it a day.

One of the hardest things of this is missing my pole time and my pole friends.  I loved my pole time away.  I miss laughing and seeing them. I can't wait to get back.

Soon. But not too soon.

Family can come from the heart

I have a great family.

One of the biggest lessons that I have learned in the past 4 years is that family rarely is limited to genetics.

Family means people who love and support each other- that can mean watching kids, helping around the house, laughing, hand holding whatever.

My family (biological and not) is amazing.  They have carried me, watched my kids, made dinner, cleaned my house, cheered me up, urged me on, and kept me going for the last 4 years I can never repay them.

The thing is I don't have to repay them.  I will be there for them when the need it and I will teach my kids that it is a privilege to be in a position to help someone else.  It is an honor and a privilege to help someone when they need it.  Our job is to serve and help others.

My family includes friends, neighbors, biological family, and even pets (really animals are some of the best therapists in the world)- the more the merrier.

I am truly thankful for each of them being in my life.

My unbroken heart

My right kidney is a pain. This is established. It has finally reached the point that it is safer to have it removed than to keep it.  Between infections, obstructions, pain it is better to get it out.

I went for my pre surgical clearance and my doctor did an EKG, I expected it to be fine; thought it was overkill and said that. 

It did not come back ok.  I had inverted T waves.  These have many different causes some really bad, some not so bad, and some benign entirely.  I was sent to a cardiologist and had a stress echo.  Again, expected this to show all was well. It didn't.  By this time I was terrified.

One of the things I have said many times, that if I had to have a an organ system with problems I am thankful that its my kidneys.  There are a lot of options for kidney issues- and if it progresses terribly, dialysis is an option (I am no where near that) but its nice to know it's there. Hearts are more scary. 

Of course having anxiety did not make this any easier. Panic was my constant companion.  Of course I went to the worst case scenario.. over and over.  I couldn't have a heart problem.  I am too healthy. Not possible. OMG, my kids, I was terrified of well, potentially dying. Obviously this was ridiculous, but it is how my brain works.

Tuesday I had a nuclear cardiac scan.  I was told if there was something wrong I would not be going home, but heading to the Cath Lab.  The doctors said it was more concerning because I have the clotting issues.

The doctor was very considerate, knowing that I was scared, was compassionate and read the test right away. There was no evidence of disease. I am fine. Cleared for surgery.  No cardiac issues.

My surgery was delayed, and I have to get a new date, and that is annoying.

How to parent when dealing with pain

I don't know if you have missed me.  But I have missed writing.

Pain has been back in a big way.  My kidney has been causing me severe pain.

Last Thursday it was at its peak for me and I went to the ER.  I ended up having emergency surgery to relieve the pressure in my kidney.  A stent was put in and antibiotics started.  I hoped the antibiotics and the stent would set me right again.

It didn't work.  My pain level skyrocketed.  My normal routine of pain meds were not touching my pain, with all of the pain my kids were getting the really short end of the stick in a crabby tired mommy who had no energy for anything.  Things that I would normally laugh at sent me into a rage. It was unfair for them and depressing for me.

My stent was removed yesterday, as it had become occluded and prevented my kidney from draining.  But the pain continued, worsened even.  Enough pain that I again considered the ER- in the end I sat in a tub of hot water and practiced breathing techniques. 

This morning the pain is much better, not gone but good enough I felt like I could move without screaming.  We even went outside!

Which brings me to managing to parent when you are in serious pain.  It stinks but it is a fact of life for so many of us. 

Parenting is hard enough.  Adding pain or illness too it just ups the difficulty level by a factor of 100.
It is not all bad though.  Kids can learn that we need to work as a team, that empathy is important, and that parents make mistakes too.

I run out of patience so much faster when in pain.  I know I have said things I do not mean to my children when I hurt.  It doesn't take back what I said but I apologize to them- they at least can understand that I am admitting I was wrong and I am sorry I hurt their feelings.

Children can be very caring individuals.  They want to make their friends and family feel better.  My kids make up some wonderful songs to cheer me up and draw amazing pictures.  Let them be a part of helping you feel better- even if it is matching socks- it is one less thing for you to do.

Teamwork is an important life lesson to learn in general.  In our family we all work together.  If we are working against each other nothing would ever get done.  By working together and helping each other we can do more that we could imagine. 

5 reasons to give blood

Please Please Please give blood. I have spent the past few days receiving blood. My kidney stent was causing me to loose a lot of blood that put me in a dangerous situation. Thanks to some generous people quite literally giving themselves, I am okay.

1. You don't have to die. Almost everyone I talk to is an Organ Donor, and you have to actually die (usually) to give your organs, blood... all you need is a few hours.  However, not many people give blood. 
2. It is almost painless, one needle stick. Just one.
3. You get some yummy treats- after you give blood you get to have some great treats- and a good excuse to indulge.
4. You will be a hero. Literally. Blood donors save lives.
5. It is one way to give that doesn't cost a thing.

For obvious reasons I can't give blood right now. But I will again as soon as am I am able. Please give blood, you never know when you- or a loved one will need it. I certainly did not expect to need blood this week, but I did. I am so thankful it was available for me.