Sunday, September 18, 2011

I've been swimming but it hasn't been pretty!

Yikes friends!  Another post with a long break and that is what has been going on.  Let me catch you up.  I even read the last post and it sounds ok... promising even, but I guess reality is slightly diffrerent than blogality because YESTERDAY was really the first day that I recall feeling some-what normal and that isn't so normal.  I have managed at least one day since the 4th without vomiting.

After my release from the hospital I did get a visit from Hospice and so far so good, insurance is covering both components of my care.  My goal is to not get re-admitted to the hospital, but I will be honest and say that if it takes that long again to be discharged, I'm walking out on my volition.   My lawyer/blogger friend says it's not against the law you know....I'm keeping her to her word too!

This past week I had Hospice and a company called Infusion Solution come to my house.  The hospice nurses have come to check on me, set me up with some fluids, take blood, etc.   Having them come to the home has been an immense stress reliever for me and so much more comfortable.

The Infusion Solution people are the ones that are taking care of my "nutritional" needs at the moment... A  bag of white nutritionally sound food that is hooked up to my port.  They monitor vitamin levels and etc. and continue to tweak a perfect combination just for me!  The bag fits into a lovely normal sized back pack and I am free to go gallivant around the country side. So far it's attached 24/7 but should be tapering off, 18 hours/ 12 hours/ 8 hours?  Not exactly sure.  I can continue to eat if I want, but as usual not much stays down.

All I can tell you is that I feel like I've been swimming and swimming, swimming in mud, dirt, muck, and every shade and thickness in between.  It has been extremely hard for me to keep my head and attitude up above this river this time around.  This has been the darkest I have felt since this whole experience has begun.  I physically ache and the nausea can almost me unbearable at times and just laying there in bed seemed to take it's toll.

What it has done though is brought to light things (decisions) that I need to get taken care off.  I've started to talk about the "important" stuff to the "mundane" stuff... I find that if I can start talking about them whether it's to strangers or the most important people to me it makes it easier to talk about them over and over again.

I need that.  And I want everyone to understand that it's for ME not for YOU.  It kills me to talk about certain things one minute, but the next day it may be like talking about changing one's pants.  Every emotion is tenaciousness and brittle and hard to experience and I never know what emotions will emerge at that second, but I NEED to have them addressed one way or another over and over again... FOR ME.

School has started, but no journals for me yet.  It's important that I have try to hand write all my things that I want to touch on.  I've decided they will really be more snip its/ stories/ anecdotes/ history/hopes etc for all of us.  The little ones won't even be reading these for a very long time anyway, although I want to incorporate "younger version" concepts too. Goal to live up!

Hunter's been doing great at the middle school (so he says, but I'll take it at face value).  The little ones both had an individual melt down the very last day of the first week of school.  Nothing major and nothing related... but go figure same day huh?  I've got appointments scheduled  for them for next week... quick 1/2 hour sessions.

I still thank and bless every one of you out there reading, loving, praying, supporting, sharing etc.

Until next time.

-Katie

70 comments:

Joan B said...

Glad to hear from you but sorry that it is with such difficult stuff. Hugs from the east coast.

~amy~ said...

Sending you tons of good ju-ju Katie...thinkin' of ya.

IamDerby said...

Sending you lots of love Katie. I am always thinking about you.

Whimcees said...

Hello Katie!

I am so glad that I came back to check your blog once more today before I gave up! It is so good to hear from you - I have been very concerned at the time frame you have been away this time!

You have been having a very difficult time, but new support systems are now in place and I hope that brings you less stress in those areas of care so that you can use your strength to address other issues and have more time to share with your family.

I keep you in my prayers every day and send love and good wishes for a good week ahead! Stay strong Katie girl! You can do it!

Hugs,

Barbara Diane

Gina said...

Kind of you to take time to update us, and glad your getting some nourishment(no matter how). The little 2 are bound to have stressy days away from you, they1ll get used to things soon enough, and just like the rest of us you'll be sad that they don't seem to be missing you :)
wishing you health and happiness :D XXX

Ted said...

It's always good to hear from you, Katie, so please keep us updated. You remain in my prayers and I do believe God is listening. *hugs*

Novice Naturalist said...

Hey Katie! So glad to see your post and to hear that you have some care coming right to your home. I know that must relieve a lot of stress for you. I hope the nutrition works great for you and that your nausea lets up. Sending you lots of love and hugs and sweet soft thoughts! J

Barb Gmitro-Best said...

Hello Katie! So good to hear from you. I was thinking of you today. Keeping you in my prayers. Hang in there girlfriend!

Linda said...

Hi Katie, glad you feel strong enough to write on your blog. The Hospice Care is very convenient. I would sure rather be in my own home too. Hang in there girl, you have so many praying for you and your family. I agree about putting down your words in your own handwriting. I think that is a perfect idea. Hugs, Linda

Sarah said...

Katie, I have been thinking about you often and have been checking your blog. I was getting a little concerned when you hadn't written but I knew you needed time to get your strength up. I continue to believe God will heal you. I know it has been a rough road but hang in there and keep up your faith. Take care Katie.

Jill said...

So good to hear from you Katie. I, too have been checking each day but today decided to check again! God bless you and keep you Katie.

With love from Ireland, Jill xxx

Jak Heath said...

So good to see you post Katie, I try to keep up to date with things going on for you and now and again drop a line to Elizabeth (lovely lady) you keep swimming girls you are sure to find some clean water, and it's much better to swim than to tread water.
Thinking of you and yours.
Love ya
Jak x

Donna said...

Its great to hear from you Katie and thank you for taking the time to post. So sorry to hear things have been so rough, I have been thinking about you daily and checking in to see if you've posted. I'm so glad the hospice care is helping out. big hugs to you. Donna x

Barb- NICUGypsy said...

so happy you feel well enough to blog. so sad that you are having rough seas. Hospice may help with more than the day to day necessities, they were a great comfort to both my mom and the rest of the family. their compassion and understanding is beyond comprehension and they will let you discuss anything even if you don't think you can. love, kisses and load and loads of hugs to you. keep your swimmies on for when you need help!

ALTHEA said...

Hello Katie,
I too am so glad to see a post from you. Sorry to hear the news is not that great but happy to know that you have help and support. Keep swimming Katie! So many us in the blog world are cheering you on.

Hugs and Prayers!

Emily Painter-Davis said...

Sometimes when you write, I want to say things to make you laugh, like "mmmmmmmmm love me some white liquid" or something stupid you know... like it's just another day.
You're such a great person. I'm sorry you are down and struggling.

I would love for you to read some uplifting devotions on the www.proverbs31.org site. Click on Daily devotions. I love them. They bring me joy and help my mind...

My friend... You are far stronger than most. We are here for you. And will be... when you need us.

I wish I was nearer to help.
Love and big Texas Hugs...
em

Mandy said...

I am so glad to read an update from you. I think of you often and am praying for you. I'm sorry that you are going through this and I wish there was something I could do. But I will to continue to read when you post and pray for you and your family.

Claire said...

Sorry to hear you are having it bad Katie, I think of you all every day. It's good to see you posting your thoughts.
Love
Claire xxx

Eden said...

I love you my dear sister.

Laura Isham said...

Katie, my thoughts and prayers continue. You have made me look at life in a new way, which I appreciate. You truly are an inspiration. *hug*

Jenn said...

You simply amaze me, Katie. Your courage and strength are inspirational. You are in my thoughts constantly. Lots of love and positive vibes continue to come your way.

Julie Masse said...

We pray for you everyday in school Katie! Praying especially for strength! Hugs Katie!

Pony and Petey said...

I feel privileged to have the opportunity to pray for you...and I do, faithfully. You are on my mind often and I appreciate you sharing this journey with me so that I might learn from you, be encouraged by you, laugh at the humor and shed a tear along with you.

I'm praying also for your husband and boys. I wish I could do more than pray but praying is the most important thing. May God give you strength, wisdom and comfort for the journey!

Allison said...

We are all swimming with you through the sludge. I am never one for words of wisdom (gawd, if I had any to spare!) so all I can say is persist. In the end, I feel that's all we can do. And know that I and so many persist in thinking of you...

Melissa said...

So sorry to hear that you have been down...you are so courageous and strong! Please know that I think of you often and pray for strength and healing!

JenMarie said...

Sweet Katie...I think of you so often. Praying for you continually! Love, JenMarie

Sandy said...

How kind of you to post. Glad you are up to it! So happy that you can get some nutrition. Gotta keep up the strength, right? Prayers and with you... and your family.

Misti said...

Glad to read an update from you. I know this is taxing on you, but believe me, we care so much and are happy that you will keep us in the loop even if it's not pretty that day! We are swimming right beside you!!!

Tammy Hershberger said...

Prayers, prayers and more prayers, Katie! Hang in there!

Susan said...

Thank you for the update, Katie. You are ever in my thoughts and prayers. It is good that you are affirming that you must do things that you need to do just for you. This needs to be your focus. It's good that you have hospice care to take the pressure off of others and make you feel more secure. You are making wise choices and should feel good about that. God bless you, dear. And God bless your beautiful family.

True :) said...

Katie,
You are such an inspiration. Your grace and strength shine through even in your harder moments. So glad you have all of the extra support and am praying you feel well enough to stay home with your family.

Hugs,
True :D

Kathy Mc said...

Still sending prayers your way, Katie, and so glad Hospice is working out for you. Sounds like the Infusion Solution program is also very valuable. So sorry to read that you are having difficulty eating on your own. Sure hope your aches and pains, along with the nausea, disappear sooner rather than later. Thanks for the update as wonder everyday!

Claire Brennan said...

Hugs to you Katie, I think about you every day chickie!! sending good vibes and I'm in His ear all the time about you!!

Linda said...

Hugs, love and prayers, Katie. Oh,
and a willing set of ears for you to talk about anything. anytime.
I am so sorry you are going through this, you and your family.
God, I pray that you fill Katie, her boys.. all of them.. with your love, and strength, with comfort and courage. I ask you Lord to stay close to her, draw this family to your side, and meet every one of their needs and hopes in ways they can't even imagine. Father, show yourself strong and gentle I pray.
and I thank you in advance for what I know you are doing.
Hang in their sweet Katie.

Kathy said...

Katie,
I'm glad you were able to post and use "us" as a sounding board! Keep doing that. I know it must be hard to even make the attempt to live life when you feel so absolutely spent. I'm praying for you, Katie and I'm so glad you were able to get people to come to you instead of you having to go to them!!
I pray you are surrounded by the help of friends and family and more importantly that you call on the help that only the Lord can give...inner strength and peace.
hugs,
Kathy

Sheri said...

Sending some love from Nebraska. I have been worried since you have not been here for awhile but now I see you have some new things and people in place so hopefully things will go smoother for you. Hospice is a wonderful thing. Almost like Make a Wish for adults! Enjoy all of the comforts they have to offer. Massages are wonderful! Stay strong Katie Sweets

jperr said...

Katie Iam sending you love and support from British Columbia,today Iam going to call the Temple in Langley to put your name on the prayer list.I think of you every day,so glad you feel safe to use us as release for your thoughts and and worries.You are a very special soul in Heavenly Father eyes.My prayers are with you and your family at this time of great need.
Jocelan

judy said...

I have been checking your blog, hoping to hear how you are, Katie.
I am sorry to hear that things are
so tough. Good that you have some
more supports now to help you. I
continue to keep you in my thoughts and prayers.

Jenn Balcer said...

You are in my thoughts and prayers. Hugs from Texas.

Ashley Nguyen Newell said...

I pray for you every single day! I love you so much and I wish there was something I can do!

As for the hospital, you can always leave "AMA" (against medical advice) if you no longer want to be there. Also, the insurance will still cover the visit if you chose to do this. Hugs!

Lisa Lara said...

Hi Katie-Kate. Yuck! I don't like that you are going through this. I know I can't change it. I don't have to like it though. I always think about you. I miss you. I love how genuine and REAL you are especially through this journey.
Big Hug
Lisa

Lynn Mercurio said...

Lifting you up daily Katie for God's mercy and to have good days. I'm thinking about you often and God bless you for your courage not only in your own way, but for the sharing you continue to do with us.

Love you....L

Mary Friederichsen said...

You are in my Prayers daily Katie.
I may not comment as oftern as I would like,but know that you are always in my prayers.

Blessings and Hugs,
Mary

Suzi said...

Just a reminder that you are in my prayers. Though we have never met, I can see your face in my mind, and think of you every day. When I do, I pray for you and your family.
Hugz!
Suzi

Julia Aston said...

Hi Katie - I'm thinking of you today and keeping you in my prayers every day! I'm glad you are able to share what you are going through and get it all off your chest!

Edith said...

It is so good to hear from you Katie! Thanks for having such a courage. Like many of your virtual friends, I would like there is something I can do. You and your family are in my thoughts every day.
Many warm hugs form afar.
Love, Edith

Lorraine said...

Katie, I wish I could give you a big hug. So sorry things are so difficult for you right now. Lifting you up in thought & prayers always.

Debgem said...

Katie - so good to hear from you. Keeping you in my thoughts and sending positive vibes your way. Hugs from Wales x

Tameko said...

Katie, I was so glad to see your update. Yes, things are difficult right now, but take any support that is available. I am familiar with hospice, as they were there for my father when he was dealing with cancer. We did know anything hospice care, but it is a wonderful support for the patient as well for the family. I think of you and your family often. I pray that God will continue to wrap his loving arms around you and your family, and that he would provide whatever is needed.

Prayers and Blessings,
Tameko

LORi said...

I hope you that I am praying for you, your family and complete healing in Jesus' Mighty Name!! Love & Hugs~!!

Anonymous said...

Hi Katie

I'm so glad you've blogged. Big big hugs! I think of you every day and I pray for you as think of it.

You are so brave! Blessings

Love - Deborah

Theresa Momber said...

Katie, I'm so thankful you have this new support in place. Your strength and wisdom amaze me. You can talk about anything anytime and we are here to listen. Love and hugs to you!!!

Glenda J said...

Haven't check in for a while... glad to see you are hangin' in. Take care and big hugs.

Sarah Moore said...

You are such an inspiration to me!!! xoxo

Kathy Mc said...

Missing your blog posts, Katie ~ I'm concerned.
Thinking of you and sending prayers your way!

Beckie said...

Hey girl, new follower ;) Sending you hugs and prayers up !

Be Blessed, Beckie
http://justbcreativecrazy.blogspot.com

Grandma Nancy said...

We were at Disney World last week and I'm just checking in. Talk all the time...whatever it takes to make you feel better. I'm here to listen. I wish you could feel the warmth and love we are all sending!!! Hang in there, friend.
XXXOOO
Nancy

Whimcees said...

Hello!

Just wanted to wish you a good day today! I hope to see a post from you soon to let us know how you are. Sending love and prayers every day to you and your family!

Hugs,

Barbara Diane

Jesi said...

People from all over the world praying for you! I'm from Argentina. We're here for you!

Anonymous said...

Just checking in on you and thinking of you every day. Sending a {{hug}}. Marylynn

Anonymous said...

Still praying for you, Katie. Please remember James 4:8 - Draw near to the Lord and He will draw near to you. This verse has helped me through many a trouble. God is always there for you; He loves you so much!

Sue C

Susan said...

I think about you every day, Katie, and check in to see how you are doing. Hugs and prayers for better days. Sue G

Kary said...

Hi Katie! {{Hugs}} Take care & saying a prayer for you today. God's arms keep you safe in His care.

Mothermark said...

Always in my thoughts and prayers!

Sending hugs from Colorado!
Cindy

Peggysuez said...

Sending hugs from Michigan.
peggysue

Kathy said...

Katie,
You are amazing. I'm also a stamper mom of three and your posts really resonate with me. Big hugs to you from the Bay Area.

patricia p said...

Katie
Dear Katie..your story and what your going through really touches me deeply. I feel for you so much as I had cancer too. Your courage and strength is something to behold. I'm so glad you have the help coming to your home as this is more normal. Home it's a wonderful feeling. Around the people you love and things that are familiar. Home it just plain feels good.
Your in my prayers and thoughts. I know many of us are pulling for you. We want to see you fly and be your full self again. This is what we pray for you. Your journey has been tough however your still with us and your family. Believe in miracles..they do happen everyday.
So many of us pulling for you to have the strength you need to get through all of this.
Keep having faith and believe with all your heart and soul.
We love your courage and strength. You are teaching all of us how to live. Your blazing the way for all of us..
God Bless and stay strong in faith.

pat

Terry said...

Katie, you are a very strong and courageous person! Today I am hoping is a good day for you. Sending you loving and good thoughts! Hugs!

Sandy said...

Katie, hopped over from Gina Ks blog. So sorry to hear about your struggle. I praise you for 'going public' with your battle. It is such an encouragement for others.
Glad to hear you are home. Keep up the positive vibes as much as possible, I thoroughly believe it helps:)
My thoughts and prayers are with you and your family. Enjoy every minute and think 'healthy' thoughts.
Hugs from Western Canada!
Sandy

ilove2write said...

Hi Katie.. I'm going to be sending you a card / tag I made you tomorrow and a letter.. I hope you will enjoy the read.... I know that you know there are so many people thinking and praying for you..and well I also care.. *hugs*

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