Jesus Left Me in Hobby Lobby

The word says, in James 5:16, to confess your sins, one to another.  But, don't get it twisted, this blog post is not a sermon.  In fact, there isn't a whole lot "holy" about it, as you will find...

Today, Monday, October 6th, 2014, I had dialysis, like I do every Monday, Wednesday & Friday.  Dialysis is hard, hard on the body and makes you exhausted in ways that people don't understand.  I am always so hungry when I get off of the machine.  But, this blog post isn't about that either.  So...

When I got off of dialysis today I felt okay, but was very weary and puny feeling.  Sam had been with Jason for a couple of days and I was really missing him, so I stopped by the school to see him for a few minutes before Jason took him home.  I, at this point, still haven't eaten & I had the bright idea to stop at Hobby Lobby on my way home to buy some feathers for a mask I am making for an upcoming masquerade.  I thought to myself, "I really should just go home and eat."  "But," I told myself, "I'll be quick, then I won't have to go tomorrow."  So, I go to the feathers, look around a bit, gather a few things and proceed to check out.  And that is when this story turns bad...

The young girl at the counter is ringing up my items, when I look over her shoulder and see a woman, with her arms crossed (with two teenage children), who is noticeably upset.  She looks at the girl who is helping me and rakes her over the coals.  Apparently, this lady is from Tennessee and was passing through South Carolina.  She (I learned all of this from her rant.) had called the store from the interstate with a sku number for a product that she wanted to purchase.  She was told by someone on the phone that said item was, in fact, in stock.  However, when she got to the store, the item was not there.  She continued to go on and on.  She belittled my cashier.  Notice here, that I am starting to take ownership of the girl.  All of a sudden, I had had it!  The angry woman is standing within five feet of me, at this point.  I looked up at my cashier and said (in a very sarcastic tone), "You know, you would think if something was important enough to drive from Tennessee for, it might be important enough to be NICE about?"  Angry lady took a deep breathe, stepped back and gave me that Southern look that says, "Well, I never..!" Her children looked like they were about to see us go at it!  I was so mad, I could have snatched her hair out of her head.  

It was then that I saw Jesus.  Yes, Jesus, who had come into Hobby Lobby with me, got His bags and said, "Imma just tip on out and meet you outside."  So there I stood, alone in Hobby Lobby listening to the Christian music playing a melody, a backdrop of what I am sure had to be "Amazing Grace," or something equally as perfect.  I was happy I didn't have on a "Jesus" pin or had just been overheard saying how much God meant to me!  

I looked at the cashier and said, "I'm sorry you have to put up with being treated like that. Have a nice day." I got my bags and left.  When I got back outside, Jesus was there waiting on me, with His head hanging down.  He said to me, "She is you.  You are her."  

I immediately thought, "God, I'm sorry. I had dialysis today!  I couldn't help it..."  Then it hit me.  What did that lady have going on in her life?  Why was she so ill and snappy?  Why was she traveling?  She could have been making a wreath for a loved ones funeral? 

Alright, Alright!  I was ashamed.  Not because the angry lady didn't deserve that.  She did deserve it.  However, I have come to know that one of the most beautiful things about our God is that we rarely get what we really deserve.  He is good.  He is faithful.  He is kind, compassionate and full of Grace.  

Today, I was not any of those things.  I was rude and quick tempered.  So, lady, whoever you are, where ever you are... I'm sorry that I was so quick to judge you & so slow to give you grace.  I don't know why you were traveling or what was going on in your life.  Whatever it is, that "last thing" that set your off, probably was more than you could deal with in that moment today.  I, just as you do, have to learn my limits.  Learn to trust God fully and give Him everything!  

 "And become useful and helpful and kind to one another, tenderhearted (compassionate, understanding, loving-hearted), forgiving one another [readily and freely], as God in Christ forgave you." Ephesians 4:32

We are all in this together.  Let us be NICE! Let us be known for our goodness, self control, love and patience.  Of course, now, I am just preachin' to myself...{insert white hanky waving here!}.  

Love to all-- Susan.

Dear Samuel (5k),

One, two, three little freckles on the end of your nose...  I counted them one night while you slept.  I was watching you.  Examining your sweet face by the light of the moon.  You were beautiful, your eyelashes curling up off of your face.  Your lips perfect and just like your Papa Jack's.  That night, one that shall remain in my mind forever, was at the beginning of this fateful Summer.  So much has changed for us, my little one.  Today was your first day of school.  When you were born, my tiny preemie, I dreamed that you would make it to this day.  I prayed and believed God that you would live.  I am reminded today, which is also your Papa Jack's birthday, of how immeasurably blessed I am.  Blessed, even as sick as I am and have been, just to be alive to watch you grow.  You have brought joy and purpose to my life and a love to my heart that I had never known.  It is my prayer for you that you grow into a man of honor, full of love and compassion.  A man who loves God and his family.  Because of where God has brought you from I know that He hears & will answer my prayer.  I am so proud of you, Samuel.  I no longer beg God to let you live.  I have learned to trust Him with your life and am learning to trust Him with mine.

xo, 

Mama

Why Can't I Have Your Kidney?

I joined an online support group for people on dialysis.  It's though Facebook and it's called, "Dialysis Discussion Uncensored."  It is a large group of over 4,000 dialysis patients, techs, family members of patients, nurses, etc., all having some time to the world of dialysis.  I have been surprised at some of the topics that come up.  Everything from fistula surgery to sex & even the role that pet's play in staying alive.  Today, someone posted this question:

"How do you feel about family members that see and know your struggling to stay alive on dialysis and none of them ever mention being tested to donate or have a bunch of excuses to avoid the situation?"

It's a hard one, really.  Hard (on the side of the dialysis patient) because this issue of "living donors" becomes touchy one.  It's touchy because it really is such a big deal to us that live only because we are connected to a machine for 12+ hours a week.  The brutality of treatment is lost to anyone who doesn't have to do it and it's is really such a foreign "way of life & way of feeling" that it is almost impossible for the patients to put into words adequately to make our loved ones understand.  However, it is from that place that we wonder, "If it's this bad, why doesn't any one offer to help me?"  

There are three reasons, I believe, more people don't offer to donate. Lack of understanding, fear, & some big reason you don't know about.

Lack of Understanding: 

I honestly believe that if friends and family members really understood what life on dialysis is like, they would be compelled to consider living donation.  No one, with a heart, would purposely leave someone they love in the position that dialysis creates for some people.  Part of the problem is this:  They can not understand.  It's impossible.  Do you remember what it was like for you before you started?  What did you expect?   How did you think you would feel?  You read all the blogs, articles and essays, yet, you showed up that first day for treatment with no idea, really, how hard it would be or how bad it would make you feel.  I remember, having my worst treatment (ever), to date.  Jason (my husband) picked me up at my clinic, which is about 3 miles from my house.  I could not walk to the car on my own.  I was so weak that I had to have help getting in my house.  I, even though I was hungry, had no choice but to go straight to my bed where I was so far past exhausted that I couldn't comprehend the words that were coming out of Jason's mouth.  Furthermore, I knew, when I tried to talk that I was not making sense.  I could barely lift my head.  I felt like I had been run over by a train and there was nothing I could do about it, but try to sleep it off.  I kept waking up, confused, alone in my room, knowing that I was physically so depleted that I probably should have had some medical attention.  I slept that day for six solid hours after dialysis before I could string together the words to tell my husband I was hungry and communicate to him what I thought would help me.  I felt, in those moments that day, like I really could die from all of this.  Folks, that is desperation.  Those moments, although they don't happen every day, are a part of this life on dialysis.   Some days, I only need to sleep for a couple of hours & I am ok.   Other days, I never really recover before it's time to go back for more.  However, even with that story, everyone's is slightly different & all the words and stories in the world don't allow you to feel the desperation, sadness and hopelessness that can creep up on you.  Until you live it, you don't get it.  So, if you have someone that you know and love that is on dialysis and needs a kidney, understand that you can't understand.  At least the acknowledgment that you know you can't understand helps.  There is nothing worse that someone popping in your room and acting like they know exactly what you are going though & have all the right answers to your problems, when they have barely stubbed their toe in their own life. Don't be that guy.

My best advise:  Try.  Know you can't really understand, but purpose in your heart today, "I don't understand what this is like, but I will try and understand, the best way I can, so that if there is something I can do, I am open to being drawn to doing it."  That is the best we can hope for in such a complex issue.  Sounds strange, "Understand that can't understand & act on it,"  but if you think about what I am trying to communicate to you, I believe it will make sense. 

Fear:  

At 35 years old, I have personally been "under the knife" 13 times (to the best of my memory).  That is a lot, I think.  So, I am used to IV's and hospital stays.  Even if I had not had anything done up until the point of dialysis, once quickly becomes accustomed to procedures and medical terms.  It's just the nature of the beast.  A life on dialysis is full of blood, needles, IVs, catheters, diet restrictions, prescriptions, gauze, tape, etc.  There is no way around it.   

According to listverse.com, the following is a list of the top ten strongest human fears: 

1. failure 
2. death
3. rejection
4. ridicule 
5. loneliness 
6. misery 
7. disappointment
8. pain 
9. the unknown 
10. losing your freedom 

People who even think about living donation, if we are honest with ourselves, have to face all ten of those, in once capacity or another.  Not to mention the fears that aren't listed.  Like, "I have children, what if I give a kidney and something happens to my one kidney later, will I die and leave my child mother/fatherless?"  Or maybe, "What if something goes wrong in surgery & something happens to me?  Am I willing to take the risk of leaving y children mother/fatherless to do something I don't "have" to do?"  Although, statistically, it is very unlikely that donation would result in death, it is a possibility and something a living donor has to consider.  If you really try-- you can understand how fear plays a pivotal role among the reasons people don't offer up an organ.  

So, now, you think, "They get it (or get that they don't get it)." :)  They made it past fear and yet, they still don't offer..."  Well, there might be...

Some Big Reason You Don't Know About:

Did you know that being a living donor has many stipulations?  The first one is that they be a compatible blood match.  But, did you know that a person almost has to be in perfect mental and physical health to even be tested to give?  Did you know they can't be overweight?  If they have diabetes, MS, heart failure, or any other list of medical conditions, they are disqualified?

Here are a few of the most common reasons that people can't be a living donor (from the medical side): 

• Incompatible blood type
• Kidney disease
• Diabetes
• Hypertension
• Significant cardiovascular disease
• Active substance abuse (drugs or alcohol)
• Morbidly obesity
• Currently Pregnant
• HIV positive
• Others as determined by the transplant team

Beyond that, there are many reasons that people don't give & there is no way to know and list all of those reasons. Those of us who are waiting on a list or for a living donation have to choose to understand that, even though we don't know what they are, some people are just not going to be compelled to give and we have to be okay with that.  No one owes you anything, especially not an organ, when you don't really know their reasons for not offering.  Some people are just not in a  place in their life where they can be that selfless and that is okay.   

It's iso important for us that need an organ to be at peace with people's decision not to offer.  Before you were sick, how many of your own organ's did you offer up?  Why?  

I believe, in my heart, that if a person is supposed to give you a kidney-- they will.  You don't have to ask them.  You don't have to manipulate them or give them a guilt trip.  I believe, with everything I am, that God draws certain people to do something so selfless.  I believe that IF you are supposed to get an organ, by death or by life, it will work out for you.  No amount of complaining and feeling sorry for yourself will change that- except it might delay it for you because YOU aren't ready spiritually.    Those of us who wait on that call, or are waiting on matching tests to come back, must live with the every present hope of life, we must live, have a good attitude, not give up, etc.  But, we must also, let go of the people around us, freeing them to be compelled to give, and being okay with them if they are not compelled to give.  

If you feel compelled to give- DO IT!  If you don't, that is okay & no one has the right to make you feel guilty about that-- no one!

So, how do I feel about family members that see and know your struggling to stay alive on dialysis and none of them ever mention being tested to donate or have a bunch of excuses to avoid the situation?

I feel just fine with that.  People are only capable of what they are capable of.  No one in my life lives under the expectation that they are required to give me an organ.  They are not obligated. If it is something they want to do, they will let me know & I will consider it a blessing.  If it isn't, God has another way for me.  I live in peace & I let the people in my life live in peace, as well, knowing that it is not by job to draw them to give.  I allow people in my life the freedom to choose their own way, just as I have the right and responsibility to choose mine.  

If you find yourself wanting more information about living donation, here is a few facts from the website of Emory University Medical Center.   

The Donation Process (EmoryHealthcare.org):

The following steps provide an overview of the donation process from the donor’s view. Each step is essential to minimizing the risks to the donor and must be completed before proceeding to the next step. More detailed information about testing and procedures can be found in the Initial Consultation section.

Step One

You will have a brief phone interview with the Living Donor Transplant Coordinator to briefly discuss your overall health and medical history.

Recipient’s Blood Type	Donors Blood Type
AB	A, B, AB, O
B	B, O
A	A, O
O	O

Step Two

Your blood type and the blood type of the recipient is tested for compatibility. The following table shows compatible blood type matches:

Step Three

You will then have a special blood test called tissue typing and crossmatch. This is a test for compatibility of your kidney with the potential recipient.

Step Four

You will then be scheduled for a formal donor evaluation. During the evaluation visit, you will meet with members of the transplant team, have additional blood tests, and imaging tests of your kidneys performed:

• A complete set of blood tests, including HIV

• 24-hour urine collection, which tests how well your kidneys are functioning.

• Chest X-ray, EKG, and an ultrasound of your kidneys

• Evaluation by a transplant nephrologist (kidney specialist)

• Evaluation by a transplant surgeon

• CT (CAT) scan or MRI of your kidneys

   Meeting with a transplant Social Worker and Independent Donor Advocate

Step Five

If testing is normal and your are cleared to donate, a surgical date is decided. You will come in for presurgical testing, consent signing, and a final crossmatch, HIV and hepatits C test approximately two weeks before the surgery.

Step Six

If the presurgical tests are normal, both you and the recipient will be admitted to the hospital early in the morning on the day of the operation.

It's Really Hard. (No Matter How Easy I Make It Look.)

I got on Facebook the other day and had a message from my cousin.  She is in her early twenties and also has polycystic kidney disease (PKD).  She said, "How do you find the energy to do anything? I am constantly so drained.  I have read a lot of people with our our disease are always having problems with energy levels.  You are always doing all these things!  I use all my energy just cleaning my house and taking care of my son! I feel horrible about it."   When I read her words, I realized something.  I realized that in my efforts to show the world that I would not let PKD beat me, that I had given an unrealistic view of what my life is really like.  I purposefully show my great moments and the joy in my life.  I do it to stay positive and to encourage others who have chronic illnesses to make the most of life, no matter what.   

Don't get me wrong, I have not misrepresented the joy that my life holds or the love that I have in that life.  However, by not showing my struggle, I inadvertently made it seem like it is always great for me and possibly given the impression that I am braver and stronger than I really am. My purpose in this post is to shed a little light on what "normal" is for me.  I hope by doing so, that anyone who reads this will hear, what I tried to communicate to my cousin.  You can't control how many bad days (or even moments) you have or what they entail.  But, what you can control is making the very best of the good days (and moments) that you have. 

Now that I no longer have a job, it is a bit easier for me to deal with the limitations of my disease.  When I worked full-time it was very difficult.  When I worked part-time it was slightly easier.  Not easier to get though, just easier to hide, I think.

Here are a few of the things that I deal with because of end stage renal failure: 

• poor appetite 
• vomiting 
• bone pain 
• headache 
• insomnia 
• itching 
• dry skin 
• malaise (generalized feeling of discomfort, illness, or lack of well-being)
• fatigue with light activity 
• muscle cramps
• recurrant urinary tract infections
• pale skin
• detectable abdominal mass
• tissue swelling 
• irritability 
• poor muscle tone 
• change in mental alertness 
• metallic taste in mouth 

So what does a "normal" day look like?  Well, I always sleep until the last minute possible.  I wake up (if I have to go somewhere) with just enough time to get a shower and get out the door.   Being tired ALL THE TIME has been the hardest thing for me to get used to.  I drink a half to a cup of coffee every morning & have a very small breakfast, like a piece of toast or a breakfast bar.  Then I take my medicine and vitamins.  They usually make me nauseous, so I quite frequently spend the later part of the morning trying not to throw up.  Speaking of throwing up, I actually DO throw up three to five times a week- at various times of day.  By lunch time I am pretty hungry and try to eat something that won't hurt my stomach.  My insides are so displaced that my stomach over produces acid, making it painful & sometimes impossible to eat.  I usually do ok with whole, non processed, natural food.   The more chemicals in food, the more likely I am to "reject" it.  It is usually about lunch time that I start hurting enough to really notice, so I get though lunch, and head toward bed to lay down to give myself some relief.   After my nap, I usually am pretty good to get some other things done in our outside of the house.  I don't have much time though, because by about six or seven o'clock, my pain level is back up to the point of agony and I have to start winding down for the evening.  I get a lot of things done by taking breaks.  When I cook or wash dishes, I will work for a while, then sit down and rest.  I keep repeating that until I get a project complete.  It usually takes me way longer than I want it to to get anything done, but I would rather take more time and do it myself, than let anyone do it for me!  

Many days I have made plans that I have to cancel because I am in too much pain to drive or enjoy those plans.  Countless times I have been late to events because I would be getting ready and have adverse effects from my medication.  When that happens, I have to go to bed & just wait until I can continue.  

Just this week I spent three entire days in bed.  I had the worst pain I have had in a very long time, I threw up all over the place, so violently that my little boy got scared and started crying.  Both of my husbands days off were spent taking care of me.  That third day we got the call that my surgery (to have both kidneys removed) was rescheduled for MY BIRTHDAY!  I was in the bath when Jason came to the door to tell me.  I burst into tears.  I sat there and cried for about five minutes before I got myself together enough to realize that I would still be okay.  But, in that moment, I was tired and upset & just wanted to have my birthday party on my birthday!  I felt sorry for myself and for that five minutes I wanted to give up.

I don't tell all of this for sympathy.  I am telling it (finally) because if my story is going to help someone I have to be honest about the bad times as well as the good times.  I have to "show" that I am not Wonder Woman.  I hurt, I cry, I get tired and scared.  It is my plan, from this point forward to be honest about ALL of it.  Because one day, someone might, as I did, get some really bad news & come across this blog.  When they do, I want them to get real, honest emotion, as well as hope and encouragement-- "If she can do it, so can I!"  

The Swallow

Since I got my tattoo a couple of weeks ago, I have been asked, several times, what it means. People want to know why. :)

To sailors, seeing a swallow in the sky was the first sign that they were close to land.  Therefore, swallows represent a sign of a safe return home.  A swallow is also said to represent respect, honor, dignity and trust.  Some also believe that the swallow represents overcoming an obstacle or trouble or surviving some sort of hardship in life.  They also represent strength and power.  The symbolic meaning of this bird was everything I wanted to see and be reminded of instead of looking at my circumstances. 

I strategically placed this tattoo on the inside of my left arm.  When I start dialysis, a fistula (where they join and artery to a vein for dialysis access) will be put in on the top of my left fore arm.  My desire was to be able to turn my arm over & see a sign of my safe return home.  Dialysis is what will make it possible for me to continue to be alive, a part of my children's lives & around to make new memories with my husband, family and friends.  In that way, dialysis is a blessing to me, not a burden.  So, when I am tired and having bad days (and I know those days will come) & feeling sorry for myself, all I have to do is turn my arm over and be reminded.  Sort of an insurance policy to make myself look at the bright side, keep my attitude positive & to never stop believing in healing and miracles.

Beside my swallow is my daddy's signature.  My father, Jack Courtney had PKD, as well.  He was given a kidney, after a couple of years on dialysis, from my Aunt June Mostiler.  My daddy died in 1999, he never really fully recovered from his transplant.  I placed his signature with the swallow because I needed to have him with me.  

So, this tattoo is to remind me of who I am & where I am going.  It a sign that, it is my decision as to how I look at all of this. I choose to be happy, to live & to never give up the fight.  "Weeping may endure for a night, but JOY comes in the morning..."

Tattoo by Rafael at Lucky Dice Tattoo in Spartanburg, SC.

Reference: http://www.tattoou.net/meaning/swallow

Mrs. Bean

Mrs. Vera Bean was my neighbor growing up on Brown Log Road in Pacolet, SC, where I lived from the time I was in the first grade though high school and up until I got married. She was a cantankerous lady in her 90's.  My very first job at 12 years old was to go to her house every Saturday morning and iron her dresses.  Dresses she still made by hand.  I was ironing today and thought of her.  When I would finish my ironing I would sit in her living room, sometimes for hours, and listen to stories about times gone by.  Her log home was filled with beautiful oil paintings done by her husband, who had passed away many years before.  She had no children.  

This is a screen shot form Google Maps of the property today.  Looking at this photo, it's strange.  It still feels like home.

Brown Log Road- View from Hwy 9 in Pacolet, SC.  

Meeting with the Surgeon, March 28, 2014

After my appointment, Jason, Sam and I had a nice lunch before Jason went to work.  Sam and I came home for a nap.  A nap, most days (these days), for me is a necessity.  I say I am like a little old lady.  I eat like a bird, I tire easy, I nap daily (if possible) & I always go to be early.    

Because my appointment on Friday was a "big" one, I wanted to share a few details that I learned.  It's a blessing to me that people are interested in what is happening, are keeping up with the details & are remembering to pray for me & my family.  I want to honor that by writing enough to keep you all informed & even answering questions if you have them.   

I found so little out there from anyone in my position, I would like to put my story out there for the next young woman that finds her self in my position: sitting at her computer in desperate moments, searching for information to give her hope.  If my story can do that, it's worth me taking the time to write it down!  

My appointment with Dr. Hull today went well.  He believes that I am making the right decision to have both kidney's removed and didn't think there were any need (whatsoever) to leave one kidney in tact.  I spoke with him about my concerns about bio-chemistry and the possibility of seizures.  There is apparently no evidence that removing both would cause seizures- one of this pieces of information I got from combing the internet for information.  I know he probably almost laughed at some of my questions, but he was very gracious and answered them all with great knowledge, professionalism & confidence.  

Dr. Hull is very meticulous.  He is very straight forward & to the point.  A trait that I found gave me great confidence in his ability to perform my surgery.  He doesn't pull any punches & I like that.  He probably doesn't have the best bed side manner, I would imagine, but, that is a fair trade off, in my opinion, for his attention to detail and great expertise.  Dr. Murdock, my nephrologist (kidney specialist) who is the primary physician in charge of my care does has a wonderful bedside manor, so I believe I will have the best of both worlds.  I am very satisfied with how my "team" is coming together. 

So, Dr. Hull said (and yes, this is a quote) that I will be cut, "from stem to stern."  He wasn't kidding.  He plans to cut me from my breast bone all the way to my pubic bone.  Currently, with the size of my kidney bump, that will made the incision almost 20 inches.  Yikes!  

The good news is this.  Some surgeons take kidneys out by cutting you on the sides, across the muscle.  The way that Dr. Hull is planning on doing my surgery, he will not be cutting muscle.  He will be going though the natural linea alba.  This makes my recovery time significantly less painful & will make my hospital stay much shorter.  

1. Linea Alba- he linea alba (Latin, white line) is a fibrous structure that runs down the midline of the abdomen in humans and other vertebrates. In humans linea alba runs from the xiphoid process to the pubic symphysis.

He says, if all goes as planned, I will only be in the hospital for 2 to 3 days.  Although that seems unbelievable to me, I am happy for that news.  Being away from my family will be the hardest part & I am happy that I get to recover at home sooner than I had expected.  Thankfully, my Mama (who is a retired registered nurse) will be coming to stay with me for a while during my at home recovery.   

I am going to be just fine!

Side Note:  Dr. Hull will be performing my surgery robotically.  He is going to do everything possible to remove them in tact.  Plus, he will take photos of them once they come out so I can see them.  :)