Monday, December 12, 2016

Anxiety - 1, KaKi - 0

This Saturday, I will once again walk into Rex Hospital, and register for surgery.  This will be the third surgery and hopefully final surgery. I have come so far since August 22nd when I came home from the hospital after a 22 day stay.  I have learned to walk again without help.  I have learned to write again.  I can cook and feed myself.  I can take showers without anyone helping me and without the aide of a shower chair.  I am able to follow conversations with multiple people.  I no longer feel overwhelmed outside my home.  I have been able to get back involved with Moms Demand Action and even lead 2 meetings!  And, I can drive!!  On August 22nd, some of these things felt impossible. My confidence in myself was shot.  I was so dependent on all around me, I just wasn't sure I would ever get back to my former level of health.  But, I did.  My body, the body I have felt so betrayed by all these years, actually showed me how valuable it is.  How strong and resilient it is.  It lived and healed even when I wasn't sure I wanted to continue.  It has surpassed all my expectations.  When the surgeon mentioned having my reversal surgery in December, I laughed!  OUT LOUD, laughed!  But here I am.

Here is the thing though.  My body wasn't the only part of me attacked on August 3rd.  My mind and soul were also damaged.   I had been violated.  Trust in my doctors and nurses was crushed.  This extreme vulnerability started raising memories of other violations, many that had been buried for a long time.  The expectation of a third surgery hung over me like a huge black cloud.  How could I let my doctor cut on me again?  How could I submit myself to that powerless position again?

Now I am sitting here 5 days away from doing just that.  Luckily, having an ileostomy is a pain in the butt!  It is no fun!  I have experienced leaks, and the bottom of bags just coming open and spilling all the contents.  It is not easy to wear any kind of pants or jeans with the placement of this bag.  So I have lived in leggings pretty much continually since August.  The fear of leaking in public and the overall uncomfortableness of the bag is definitely driving me to have this surgery and get rid of this.  I hope to have all vestiges of this surgery gone and begin 2017 anew!!

So, I will gather all the courage I can, and maybe borrow some from my kids and hubby, and will walk into that hospital on Saturday, lay on the gurney, get that IV, and go to sleep and put my total trust in my doctor to do a good job.  This time I know he understands what a big deal this is, and he will rise to the occasion.  He is a good man and a great surgeon.  It is time for both of us to have a successful do-over!

So you may not be seeing me for a few days, I will be regaining what strength I lost again.  But this time I know my body is capable.  And then you are going to watch me treat my body to the exercise it needs and the nourishment it needs.  My body will be pampered in 2017.  It is time for me to show my appreciation for all it has done for me!

This post has been written during an extreme panic for me.  I needed to get it out.  I wasn't going to publish it, but, you know,  this is me.  This is what is going on.  My meds have finally settled my head and I am feeling calmer.  But anxiety will be my constant companion I fear until saturday!!

Monday, August 29, 2016

The Short Story of Where I Have Been

August 1st, 2016, I walked into Rex Hospital to have a sigmoidectomy.  This would relieve me of the constant diverticulitis I had been battling the past year.  I was scared, of course, but felt sure that I was doing the right thing.  The surgeon came out saying it was a textbook surgery and that he was very confident the new seal was secure.

August 3rd I went back into an emergency surgery because I had become septic.  There were some tense hours for my family. The doctors found a tear they had made when stretching the colon to seal with the other part.  I woke up 12 days later having only little snips of memory.  I spent a few days in ICU after the 2nd surgery and then went back down because they couldn't get my heart rate down and a while, 10 days in ICU and 12 days in regular room.

I expected to come home August 4th with laporoscopy scars and sore.  Instead I came home August 22nd with a 4 inch incision starting at my belly button.  Another incision along the "C-section" line.  And an illeostomy.  The thing I had most dreaded.

I lost almost all my muscle mass, lots of weight, my taste buds and confidence.  I gained a new appreciation for life, a fighting spirit and hope for a better life.

Because of my extreme weakness I am not allowed to ever be at home alone.  I am also having to limit my activities.  And well, everything is an activity. Showering, exercises, talking on the phone, sitting up in a chair, and even eating.  

So, I know you all want to show me your love, and I so appreciate it, but right now, I need it to be in card form, facebook notes, I am loving funny children pictures and videos!! I can usually handle texting as well now.  I just might not be as fast as I used to be.

This is the quick synopsis, because I know some of you are worried.  More of the story will probably come as I begin to process more and more.

Thank  you for your patience and concern.  I love you all!

Saturday, May 28, 2016

"I am tired"

"I am so tired."  "I am exhausted."  "Not sure I can do much more."  These are all common phrases you hear on a daily basis.  The way we define these words -  tired, exhaustion, I can't do any more - is based on our own personal experience.  If you are chronically ill, these definitions change.  So far, I have not found a word that truly explains what it is to be tired to me.  I don't presume to speak for all chronically ill people, but I have had enough conversations to know that I am not alone in this experience.  So, if you are truly interested in knowing and understanding your chronically ill friends and family, this is a concept you need to try to understand.

We wake up tired.  I mean, we have slept 8, 9 or 10 hours and we wake up and feel tired.  The tired like you feel mid-day after a really busy  day, and it is just 8 a.m. for us.  So when we say we don't want to plan anything before 10 a.m., it is not that we are lazy, we simply need that time to get going.  All the things you do absentmindedly take real concentrating and negotiating.  For instance, "I need to take a shower.  ugh, but I have 3 errands I need to run, and I have dinner out tonight.  I am not sure I can dry my hair.  Well, you know it doesn't look that bad....I will wash my body and wait till tomorrow when I have less to do"

By our mid-day after probably doing only half of what you do, we feel like you do around dinner time if you have been busy the rest of the day.  Around dinner time, we feel like you feel if you have pulled an all-nighter.  Seriously.  Maybe even more tired than that.  I have never been well, so I don't know, I am going by discussions with my well friends.

Then you add aging, weight gain, pain, emotional stress and well, you can pretty well multiply our tiredness 10 fold.

Why am I talking about this?  Because we don't like to talk about it with our friends and people who don't know us well.  We want to appear normal.  Plus we don't want people to not ask us to do things or involve us in things.  Because most of us, the ones who have truly accepted our bodies, have learned exactly how much energy we have and we mete that out precisely.  I mean PRECISELY.  Sometimes we miss the mark and we pay.  You may too, because you have to carry us home. LOL  So when a chronically ill person tells you they will do something, know that they plan their entire day around how much energy that will take so they won't let you down.  Sounds exhausting, doesn't it?

I have shared the spoon theory with you before, and if you are new to my blog, please go read it:  The Spoon Theory.   Hopefully my words along with hers will help you to understand a bit better.  But please know, we want to be treated normal.  We just need you to know that when we say we are done, don't make us feel guilty or bad, because we are already doing that to ourselves, we don't like to miss out on things.

I have a great family who helps me.  My husband has helped to teach me about patience with my body and the importance of spending my energies wisely.  My children have taught me you don't have to do big things to have fun and bond.  A night in with a movie and snack foods is just as good.  My friends have taught me how to truly love a friend.  They give of themselves in amazing ways.  My great friend, Allison Dahle, gives of herself constantly.  She drives me to MY events and pitches right in where she sees I can't.  She can gauge my exhaustion almost as well as me and Jack!  And she just loves me no matter what.  We planned to go out and shop and have a big day, but I can't, well she comes and gets me and gets me comfortable on her couch and we watch tv or giggle and talk or I sleep and she does whatever.

I am a lucky woman.  Because of my family and friends, I get to continue giving to this world.  And please know, family and friends, I know it is because of you that I can do the work I do.  I love you all dearly.

So choose love and joy every day!  Oh, and let's end gun violence!!!!!  :-)

Thursday, May 12, 2016

Parting with a good friend

Good bye old friend.  I am so sad to see you go.  You have been with me since I was three years old.  My grandmother Eads (Allie) introduced us.  I loved those mornings with her.  In college you brought James Hamilton into my life through our mutual appreciation of you.  We had some great discussions in those early hours pretty much by ourselves.  You got me through having to be on duty at 7:00 a.m. sharp when I taught in middle school. You have been part of so many lovely mornings of lounging and starting my day slowly.  I don't know what I will do without you.  I know, I can go to your cousin, but it isn't the same somehow.  I will miss you!  Maybe we can try again in a year or so.  But I can't stay in a relationship that's abuses me so much!  The pain is too great and as I am getting older and weaker, I can't recover as fast.  I have important work to do right now, I don't have time for recovery from your rampages.  Plus you seem to be angrier and more destructive each time.   So goodbye Mr. Coffee, hopefully we will meet again.