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Daily Life, Mobility, Sitting

Celebration! & Update on my Celebration 09/2015 Revisited

After re-reading the two posts below I was struck with the thought that I was getting wise in my old age.  In the last four years I have reorganized my thinking. Yes, Tarlov Cyst Disease has taught me a few things.   I spend less time being ‘cautious’ about what I do.  Or, could I say, that the being careful has become second nature?  Daily life has not changed much, just my mindfulness has improved. 

Celebration!  09/09/2015

It is rare that I can celebrate.  Really celebrate.  I have gone almost two complete days with unnoticeable discomfort.  Yes, there is some sting in the buttock region, but only if I think about it.  Why am I celebrating?  Such days are rare indeed, but they are out there.  Those with  Tarlov Cysts, or any chronic pain really looks forward to these days.  We spend so many days wondering if we will have a good one, that when it happens it almost sneaks up on us.

How did I get this discomfort free day?  I have no idea, I have not taken any drugs.  I won’t complain, but, yep, I will celebrate it!

On Friday, I was so concerned about having landed on my rear.  Miss Grace here, had about 50 sheets of paper and was headed downstairs to the office.  I have no clue what happened, but down I was going.  Let me tell you all I could think about was: “I was not going to sort those papers again“.  So, my free hand (yes, I was holding on to the rail) went straight to the top of the pile.  I was lucky to have the forethought that sitting was my only option.  How I did not hit my back and how I only went two steps down is a wonder.  I will say that God was looking down at me in that moment and took care of everything.

Also, having company come in from out of state that evening was my excitement for the week.  I did manage to leave the house to drive myself to meet them at a restaurant for dinner, but I was hurting so.  Since they are family, I left the walker in the car, and my husband had to hover around.  Some people.  To the couch I went with my drugs, after getting home.  Then the next day I tried house cleaning and that did not work so well.  On Sunday, my daughter cooked our meal.  I never go to someone’s house without helping out.  So, I cooked some and took it over, wearing my n-said patch.  By that night I was on drugs, again.  Monday was fairly easy, in other words I did nothing.  Yesterday comes and I hit two stores for two things.  The home repair store was the worse, no employees to help, so that took me over an hour.  The next store was a mega store that never has anything organized without you having to go completely across the store to look for at least one item on your list.  So, another hour.  When I got home the only thing hurting (besides patience) was my legs.  Nothing major.  By bed time yesterday, I was doing fine and that is when I realized that I was not too bad off.  Now, it is dinner time and I have no ache.  So, celebrate with me!

Tomorrow might be another story, but we won’t think about that.

For those that picked up on the “so many days wondering if…”  That is not all we think about, but it is a thought that is in the back of our minds.  It is almost a constant prayer that we don’t do anything that can cause our uncomfortable bodies to blow up.  It is not that we want to think about it, but we must.  We need to be aware of everything we do, so we can monitor what causes discomfort.  If we were to constantly do things without a thought, then we will pay within hours or minutes.  So, if your sufferer has a good day celebrate with them.

 Update on my Celebration

Written on 9/13/2015
OK, I guess the celebration is over.  I have a certain disease called aqua genetic pruritus.  As the words suggest, it is brought on by water, in my case it is humidity, rainy days, even being at the beach (my love).  After several days of rain and trying to sleep on the 10th, and not being able to handle the itching and bugs crawling (sensations anywhere on the body) at 3 am I take my xanax.  Well, long story short is: I missed my morning caffeine.  I woke up after 10 am. Lack of caffeine equal’s migraine.  That then caused physical stress which in turn causes tension.  Tension causes pain.

Now it is the 13th and I have really aggravated the back.  But I got half my kitchen cleaned.  All my roosters are washed, and the tops of the cabinets dusted; fridge has been pulled out and cleaned under and its fan area cleaned; last the oven has been pulled out and cleaned under and behind.  I sure can supervise.

Now on the 16th, I am experiencing the stinging along the spine, and the hips are not having fun.  Am I complaining?  You bet not.  I am so excited that I was able to help with the kitchen cleaning, I even was able to sit at the hairdresser’s and have my hair cut.  It usually takes over 30 minutes because of all the natural curls.  I did not have to stop her to get out of the chair this time.  I didn’t even need the walker getting out of her chair, she did great helping me.  So maybe I am still celebrating.


So for my ‘revisit’ let me reassure you that I do not carelessly go down stairs.  I have had too many slip-ups on those things to not hang on to the handrail.  I do lots of things now without thinking about the ‘getting stranded’ and in pain.  I even head out by myself.  Don’t get me wrong, I did it before and after the surgery, but now I have a routine about the ‘getting out’ by myself. 

I think about what I wrote concerning the migraine, and it hit me that maybe that was my last one!  OH, don’t get me wrong, I do get headaches, but not the aura, distorted vision, sound, heartbeat pain, let me hide in the dark ones.  After 50-so years and then to not get a migraine, I will still celebrate that one.

Do I still have pain free days?  Yes, but then again, I have chosen to not use that ‘p’ word so I will say this:  my days have discomfort to some degree each day.  I just must not let it take over my life.  Do I wish I could say that there was no discomfort, you bet!  My concern is still with the unknown reason for my legs to not listen to me going down steps.  I would rather have some discomfort than living in fear that I may not be able to take my next step.  Give me a little burning in the rear, even a little nerve hum in the leg, over that.   


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