chiari angel

chiari angel

Wednesday, February 27, 2013

My daughter my best friend...

She is always there to listen to laugh and even to cry with me...and help me through this journey...

When A Mother Cries

When a mother cries,
Her tears stab at her daughter’s heart
As they plummet to the floor

When a mother cries
Her daughter cries too
She cries because she does not know what is wrong
She cries because she can’t get rid of her mother’s pain
She cries most of all because she loves her mother

When a daughter cries because her mother cries
Her mother cries more
She cries because her pain has hurt her daughter
She cries because she does not want to see her daughter cry because of her
She cries most of all,
Because she loves her daughter

Once the tears have ceased however,
What remains is love
The love forever shared between a mother and a daughter

Saturday, February 23, 2013

So very tired...

I guess my doctors visit wore me out because I have slept most of the day for the past 2 days. My labs show that I am anemic so I have to have more iron infusions. The lasix therapy is wearing me out...but so far is not working because I am still puffy. At least my kidney function is hanging in there at 13%. I just do what my body is telling me to do and rest. But it does get lonely...miss being with people. But have to be careful going out in public places because of germs and infections. I want so much for this to be over. Just tired.

Come and rest here
Come and lay your burdens down
Come and rest here
There is refuge for you now

You'll find His peace
And know you're not alone anymore
He is near

You'll find His healing
Your heart isn't shattered anymore
He is here

Breathe in
Breathe out
You will
You will find Him here

      Kari Jobe

Thursday, February 21, 2013

doctors appointment...

I had my nephrologist appointment today at 3 and just now got home! I got out of the doctors office around 5 or so but hit terrible traffic on the way home. I am exhausted! Waiting on my labs to come far it says my red blood cell distribution is elevated to 17.2%. WBC elevated to 11.8. No word yet on my gfr or creatinine. Which is odd because that is usually the first to appear on my labs. But they were having computer problems today so that could be the reason they are not posted yet. She did say she wants to have labs done more often and have me see the n.p. more often between visits to her. So I have an appointment with my nurse Jan in a week or two.She was not very happy with the swelling in my feet and legs so she increased my lasix to 8 pills a day at 40mill. each! Plus another water pill to take along with it!

Wednesday, February 20, 2013

Hailey and me...

Precious moments with my grand-daughter...I want to be around to see her grow up.

Restless Leg Syndrome

Lord have mercy..I am having a restless night! One of the most distressing symptoms of kidney disease is restless leg syndrome. I have been on the strongest dose of  requip for my restless legs for quite some time now and it has recently stopped working. My doctor prescribed another medicine to take with it...gabapintin. It was supposed to make me sleep...but that didn't happen. Instead I feel unsteady and groggy. My legs feel heavy and I just feel yucky all over.  So here I am up at 4 am. Trying to explain how restless leg syndrome feels is hard. It is so painful and the only relief you get is to constantly move them. I even get it in my arms! My muscles throughout my body contract and I can't control it. I have to have labs done on Thursday...anxious to see where my kidney function is. Hoping and praying for the best.

Saturday, February 16, 2013

Along my journey I have met so many wonderful people waiting just like me for a lifesaving transplant. Fighting just to live. I always tell people...when you get down or you think life is hard just come along with me and spend a day at Vanderbilt. Look at the people in my renal clinic.Listen to their stories. Most of us are smiling through the pain because we are grateful to be alive to see another day.Behind the smiles we know what each other is going through. Or go visit a dialysis center and see what it is to sit in a chair for hours hooked up to a machine .We are fighters and survivors with a disease that ravages our bodies and leaves us exhausted. I hope and pray for all of us waiting that soon our wait will end. In April I will have the pleasure of being part of a portrait series project that a photographer friend is putting together about organ donation and those of us on the waiting list. David Y. Lee is the founder and creative director of the storytelling project and has worked very hard at encouraging people to register to be organ donors. I am looking forward to his visit and this important project. thankful for wherever you are in life. Don't take even one second for granted. Life is a journey to be lived even when it's not perfect.

Friday, February 1, 2013

I would like to thank Find a Kidney Central for featuring my page on their website and for getting the word out for so many of us waiting for a kidney transplant. It helps to know we are not alone in this struggle. It has been a trying week for me as far as coping with painful swollen feet and skin problems associated with the edema. I was taken off my lasix 'booster' because we believe it may be the cause of my pancreas issues. But now despite increasing my lasix tablets the swelling has gotten so bad I am not getting enough circulation to my feet and legs. I have an appointment with a G.I. doctor on Monday to follow up on the pancreas stuff. I am trying very hard to stay positive...right now I feel like I am in a lonely place. I watch the world pass me by and I just want to get out there and live it. Someone wake me up from this nightmare...please.