To Open A Window...

[My Dear Twitter Readers, when I began this blog I made the decision to write only about my very full journey and not where my deteriorating health has brought me to now.  I have always been far more at ease being the pied piper rather than going in depth about where my health has brought me.  Several months ago though I opened a rare window going in depth where I am and what days are like being in my body because I have touched on the dire prognosis given to me at age thirty-four where my body was taking me.  As I have many new blog readers since I posted these two pieces I am reposting these.  Not to bring sadness but to hopefully convey my resiliency and continued courage to inspire.  Because it takes fire to make a diamond.  And darkness to make a star shine bright.  So I open My Window.]

My dear ones, there is a huge reason why I do not write about my current day to day life in detail.  For one thing it cannot change and I think it would not only be very BORING but probably would make you sad.  Since this blog and my life have always been about living my life on the bright side this is the place where I strive to bring you.  For you see my journey is not defined so much by where I am now but by the many amazing ways I arrived here.

For the second time only I shall open the window and share with you what my days are really like at this time of my journey. 

First, since I must take forty-nine pills a day I spend a great deal of time shoving medication into my mouth while gulping down large amounts of water.  Most are trying to keep both my digestive and urinary tracts functioning.  Or for acid reflux.  And the never ending nausea and pain. 

If I get three or four hours of sleep each night I am lucky due to the never-ending pain.  I had been on a potent med for twenty-nine years that helped tremendously but thanks to the opiate crisis pain doctors are not allowed to continue writing scripts for it.  On my own I had no choice but to withdraw from it.  Trust me, this made my doctors furious and they made every effort to get a waiver for me but were denied.  So though I am on a strong pain med I am grateful to be on it gives far less relief than the former. 

My bladder has not been fully functional since 1980.  To keep it working I must drink large quantities of a water/Gatorade/caffeine combination 24/7.  So I am also up during the night emptying my bladder.  Only mine does not empty in the normal sense.  It takes a good half-hour to an hour to empty.  We must limit my catheter use due to infection and other problems, so these are a last resort.

With my barely functioning colon I must take a new very expensive jump-start med I must inject myself with for emergencies.  Finally it now is also available in pill form thankfully because I am limited on where I can reach to inject myself so my thighs and abdomen can get in terrible shape!🥴

However don't be deceived by "jump-start," for after I take the med it is an hour or longer before I head to the bathroom.  From there it takes an additional two to three hours for my colon to become empty.  

So between my bladder and colon I spend a great part of my day in the john where I keep books and my assorted horse, theatre, and art magazines.  Besides also working on this blog at times or playing Solitaire using my Smartphone.  Or being on Twitter.🙃

The colon process is very exhausting and far from being as easy as it may sound here.  At times it is VERY uncomfortable and very painful with severe cramping.

Back to my pain.  As I do not have cartilage in my body bone is rubbing on bone.  My orthopaedic surgeon cannot figure out how I am still walking as my knees and legs are a mess as well as my spine.  Nerve damage from the inflammation disease within my spinal cord has weakened my legs considerably too, also causing pain.  Since I have the same muscle mass as an average height person on my short long bones, there is a lot of pain with this too.  

Throughout the day I must lie down as this is the only way I can get relief for awhile.  So I am in bed often.  I work on this blog there too if the nausea isn't intense and I am able to focus.😃

My laptop is in my living room and I spend an hour or two there each day as well.

As far as eating I am only allowed to eat one meal a day consisting of soft foods like mashed potatoes, soups, canned peaches, cooked cereals, etc.  And I must drink two to three Boost Protein Drinks each day.  Eventually, they may have to surgically insert a port and liquid nourishment will enter my system through it.

In-between all that I care for, and spend time with my three feral cats, who are always close.  Since I live in the country there is wilderness for Harper, Sweet Cheeks, and Rory to enjoy, as well as my view of endless hills, trees, and horse farms in the distance I forever gaze upon.😃

And this my dear ones, is what my days are and why I do not write about them.  Thankfully I have lived such a full life even with the many hospitalizations, enabling me to have such a wealth TO write about and share here.  For this, I am grateful beyond words.  Many with and without challenges do not often have such full lives, so I consider myself as being blessed...oh, so very VERY blessed.🐎😃🐎💕💫