It's Just Me Again !

     I have been regularly berating myself for not posting, however once again why post if it's negative. I've been in that mood of "just nothing to say" for awhile now. The day to day struggle can wear a person down, and reminding myself to just get up and do it, doesn't always work.  The mind is a powerful thing when it does not want to budge.
     After discovering I was experiencing every side effect from long term use of Colistin, I have been changed to a different inhaled antibiotic. I am now using Amikacin, and it was amazing the first 3 weeks ! I had no cough, I was sleeping ALL night and my energy returned. Sadly so did an excruciating earache. Not just the ear, this extended all the way down my neck - ear canal- type of ache. Nothing worked. I then discovered in rare circumstances it can cause hearing loss....
Hmmmm choose between hearing or having my lungs.. Difficult choice huh? I stopped the Amikacin for a week,, and the cough returned with a vengeance. Yes , even to coughing so voraciously I lost my breakfast in the mornings. We decided to try once a day and see if kept the infection at bay. It did.. Well until December, when the nebulizer paralyzed my vocal cords... Yes ... completely.. I had no .. NO voice.. and it was painful to try and talk.
      Eleven days in the Florida Keys in relative quiet. I guess my husband handled it quite well ;)
It was still the best and warmest Christmas to date. We played with a family of Manatee that were residents in the marina, and basically enjoyed the sunshine. My neice and her family came to visit for a day, being stationed in Key West, made Christmas away from family, better because there was family. Went into Key West for a day and Ozzi discovered the famous Key West Roosters !  We tried to visit again and after finding NO parking chose to go back to the campground.. Money saved-right ?
      Ten days on Cipro for Diverticulitis caused me to once again stop the Amikacin. I had severe Vertigo and didn't need to give it anymore help. Now it is with regret, that I go back on schedule with the nebulizer, I feel the need to fight this infection once again. I will admit, the freedom of being away has been such a heavenly relief..
For now.... Back to the grindstone....  Well until the earache retuns again anyway..

Life is a series of things we simply don't want to do... Do them anyway.. It matters ..


   

Blessed sleep

Remember I mentioned previously how refreshing a good nights sleep is? You wake up in the morning , stretch, and happily breathe in the start of a new day.
I've had one week without that dastardly cough waking me repeatedly during the night.  The cough suppressants by the bed have been happily ignored!  One week in almost 2 years ! Two pillows sit on the floor at night, when they used to join 2 friends under my head, forcing me to sleep upright,  if I wanted to sleep at all.
Glancing at the clock and realizing you seriously slept is a beautiful thing.

Well,  the pillows have gotten lonely and had clandestine meeting s with those cough drops. They will soon be back in their rightful places.  My cough returned with a vengeance this morning! 5AM I bolted straight up in bed (vertigo hit too) coughing to the point of choking.  Like an excited friend returning from the vacation of a lifetime,  it has not stopped speaking since .

This does give me serious thought.  Were those IV antibiotics worth the cost ? Was it worth me taking a nose dive into that Black Hole known as the coverage gap? My checkbook loudly shouts NO! But my throat, chest and mind are nodding a vigorous Oh Hell Yeah!

7 days of blissful sleep is well.......heavenly.
I knew 22 years ago this could happen, but would you trade that many years of life on a maybe?  Me neither.  Being chronically ill means your health is front and center a full-time job. We can take breaks & mini vacations,  but will always return to our job.


Yawning,  I lean back in my recliner and hope to get a 20 minute power nap - game on     me vs cough.

Journey Part One

The exercise has been going well.  Sunday I opted for walking around the  Sharks Tooth Festival instead of the treadmill.  Granted the cinnamon glazed, strawberry topped funnel cake did nothing for my cause :) But was it ever good !

I'm also noticing a slight increase in my energy level too which is a Blessing. Oh! and I finally tackled the multi-station gym ! Not much, just 2 sets of upper body weights, and I came to another realization.  I am weak.  The time for getting serious has long been waiting.

I know the strength training is crucial.  Especially since my transplant cocktail includes the dreaded Prednisone!  (Holds fingers in the shape of a cross and gives a hiss)  Prednisone has many medical uses, helping prevent organ rejection is a great reason to keep it around. The side effects of long term use are no walk in the park either though.  It loves to slowly chip away at bones and muscle,  so strength training is important.  My doctor once said "one week missed exercising for me was similar to a healthy person missing 2 months " !! *groans & hangs head*  I have a lot of catching up to do.
I still firmly believe that since Prednisone has been around since the dawn of time they could've made it taste better!  Have you ever had that tiny pill stick to your tongue?  Or worse, the roof of your mouth?  OMG! Nothing gets rid of that taste!

Since my IV stopped Saturday my cough is slowly returning as I knew it would. My vicious circle of survival :)  but now the vertigo has reared her wavy head too. This morning I sat on the bed as the room spun a few times and considered calling out "Auntie Em!" Toto!"  I'll up my water intake and see if it helps.  If not, at least I won't be dehydrated-but possibly feel like the Titanic.  ;)

Errands today and orders to finish and water to drink, my day is planned.   Hope yours is happy and productive too.