Friday, April 11, 2014

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!"  

Saturday, April 5, 2014

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.