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.

Thursday, October 29, 2015

An Invitation

I have to start with an apology.  Yes, I am one of the ones who have wanted to take your guns away.  Guns scare me.  In my childhood hometown, we experienced several deaths due to guns.  The little girl in me has remained scared and just wanted them to go away.  When I had children my fear became insurmountable.  To figure out a way to live with it and to keep my children safe, Jack and I decided on a simple question.  Every time my kids were invited over to play with someone else, we asked, "Do you have guns in your house?"  People were always unbelievably nice in their responses.  Often we heard, "I have never thought to ask that question, but it is important to me as well."  

We only encountered one family who answered yes to our question.  They offered to show us the guns and ammunition and where they were stored, and all the safety measures that they had in place so that their son would also be safe.  We let Stephen play at their house because they took our concern seriously and respected our wishes.  

This question helped me to not parent out of fear, but out of safety.  Then Columbine happened.  I was paralyzed by a fear that I had not even considered, someone else could enter my kids' schools and shoot them.  I was too overwhelmed with raising my children and adjusting to being a full time preacher's wife so I put on my blinders and hoped for the best.  Then Sandy Hook happened.  This shooting hit a nerve since I was an elementary school teacher.   I thought surely now our country will do something about this issue.  But, no, nothing was done and I decided it was over.  Our country would be overrun with guns and people who had no business owning them.  I gave up.

Through all of this, I thought the solution was getting rid of all guns.  I know people hunted, and there should be that consideration, but it was too much to comprehend, so the easiest answer seemed to be to get rid of them all.

After watching a congress that will not budge, will not compromise, and thus get no where, it finally hit me.  I must do as I say.

So I joined a group, Moms Demand Action, which is about gun safety, not the abolition of guns.  I am ready to come to the table and listen.  I want to know your thoughts.  How can we make guns that will not go off when dropped?  How can we make guns that cannot be shot except by the owner?  How can we make them safe yet easily accessible in the instance of a home invasion?  How do we keep children from getting their hands on guns?  Do we need to have a gun that has the ability to shoot 800 bullets a minute in the private sector?  (evidently the AR-15 is able to do this)  Do we need to open carry a pistol in the grocery store, spa, knitting store, or the mall? What other questions are there that I, as a pacifist, don't even know to ask?

So, I have my cup of coffee.  I hope you will grab one as well and pull up to the table for a genuine exchange of ideas.  If not, I understand.  We are all at different places in our lives. You may still feel discouraged and hopeless.  You may be scared that you will lose your protection.  I don't know.  So I will begin by being silent and opening my heart to hear yours.

Tuesday, September 2, 2014

Fatigue....Really

I am sitting in my chair.  My mind is racing with the things I need to do; make a menu, grocery shopping, laundry, organize my thoughts for a meeting tomorrow, etc.  I am still in my pjs at 12:00.  My body just won't cooperate.  I am not in severe pain and I am not running a fever...at least I don't think so.  My body has just quit.  It does this sometimes.  My energy bottoms out and it is just hard to get up to pee.  Yes, I am serious!  I sit here and know I need to go, but trying to convince my body that using energy in that way is absolutely worth it, is difficult.  I wish I could say this is due to...but I can't.  Right now I know that my iron has bottomed out, so I am awaiting an iron infusion that will help dramatically.  But it is not always that easy.  When you have several autoimmune diseases, fatigue is just part of your life.  But what is difficult for those of us who suffer this, is that people think they understand.  When you are confronted with someone who has cancer, unless you have had that cancer, you are instantly in a place of curiosity and want to understand where that person is coming from.  When you are confronted with someone who says they are extremely fatigued, you tend to launch into cures, your own experience, etc.  There is no curiosity, there are no questions, there is only judgement and knowledge.  But, if you take the time to really listen and be curious, you might be surprised.  For instance, have you really ever been so fatigued you had to talk your body into getting up to pee?  I mean seriously?  Have you ever been so fatigued that when your stomach alarms you it is way past time to eat, you still cannot get up to feed it?  Sitting here right now, I need to do both...pee and eat.  Writing this is exhausting me, and I have already taken several breaks and am foggy enough to wonder if what I am writing really makes any sense whatsoever.  But rereading it?  No way!!  So I sit here with a brain totally active, although hazy and a body that can't follow.  It is frustrating to say the least.  I look at facebook and see all the activity that people have been involved in this past holiday weekend and I am ready for a nap!  I envy them.  I envy the energy they have to get up early while it is cool and go for a walk, paddle around a lake, weed a garden.  The energy they have to cook tremendous sounding/looking meals for their loved ones.  The energy they have to travel to see family.  The energy they have.

Don't feel sorry for me.  Don't pity me.  I am okay with my life.  I know that this extreme feeling will soon be over, as soon as insurance is done putting the doctor's office through its paces and finally approves the infusion, I will feel much better.  I will never have the energy you have, but that is okay.  I have found my limits, my tricks, and I live a full life.

I am lucky to have friends who love me and accept me as I am.  I am the luckiest woman in the world because I have a husband who loves me no matter what.  He doesn't let me fall down the rabbit hole of inertness, but he doesn't push me beyond my limits either.  I have 2 beautiful children who live so gracefully with the uncertainty of a mother who may or may not be able to follow through on promises.  I am blessed.

So, do me a favor.  Appreciate your energy, your body's ability to do what you want to do.  And also, be curious about those in your life.  Don't just label them and think you "know".

Now it is time for this body to move....some things it just has to do, and thank god I can still do them.

Thursday, April 17, 2014

Meeting Your Child Again

With my second pregnancy, I gave in to my husband and we found out the gender of our baby early.  So for 7 months, I walked around knowing that Allie Elizabeth McKinney was forming inside me.  I could talk to her saying things like, "Okay, Allie, please stop pushing on Mommy's ribs."  With this knowledge, the anticipation was a bit different than the first time.  One, I knew more, I was more confident, but I felt an anticipation of meeting Allie.  Not just meeting my new baby.  It felt like a very specific anticipation.

In 62 hours, I will be meeting Allie Elizabeth McKinney again.  For the past 8 months she has gone to Senegal, Africa, to live with another family.  While we have gotten to facebook chat, and skype, none of those are the same as sitting face to face with someone.  They have however given me glimpses of the changes in my daughter, much like the sonograms gave me glimpses of the baby growing in my belly.

My daughter left as an eighteen year old.  She left speaking English and Spanish.  She left having never experienced being away from home for major holidays or events.  She left having an intimate knowledge of our family unit only.  She left with a knowledge of developing world problems, but only book knowledge.  As mature and independent as she was, she left a girl.

Now she is coming home a nineteen year old.  She is coming home speaking English, Spanish, some French, and Wolof.  She is coming home after spending Thanksgiving, Christmas, and birthdays away from her American family.  She is coming home with a Senegalese family who also love her.  She is coming home having experienced intimately how another family lives and lives in Africa.   She is coming home having experienced a developing country.  Having seen good and bad that have changed her.  She is coming home a young woman.

Just like the actual pregnancy, these past months have been hard.  They have had their ups and downs, and their scares.  But, just like the birth, I know when she is in my arms, it will have all been worth it.  And just as she changed my life then, she will change my life again. 

I am anxiously anticipating that moment, just as I did 19 years ago when she is in my arms once more.  Because no matter how tall, how mature, how old, Allie, you will always and forever be my baby girl.