Loss of Control

Well, unfortunately I don't have anything positive to report...I cannot wait for the day that I can post an entry on this blog and have it actually be UPLIFTING and HOPEFUL!  That day will come, but until then I will just write about reality....

After the scope procedure I still continued to decline.  I was unable to hold down food or water and was so ill I could hardly even get out of bed. 

I went back to my gastroenterologist AGAIN and it was a waste of time.  My doctor said that my scope was inconclusive and only showed general inflammation, nothing that would explain the severity of my symptoms.

Awesome....Just what I love, another doctor that doesn't know what is wrong with me and probably thinks I'm crazy....

Not only did my GIT symptoms continue to take a turn for the worse, but my other Lyme symptoms went haywire as well. 

My vision became so clouded and painful I couldn't read anything...Not the TV guide menu, not the pages of a book or magazine, literally nothing.  My eye sockets pounded with my pulse, a throbbing painful sensation that is difficult to describe.

My sciatic nerves felt shredded, like someone was rubbing shattered glass up and down along the nerve endings.

My hip joints felt like they were going to explode, like someone was pumping the joints full of boiling water. 

My mind was a jumbled mess.  My memory wasn't working at all and I felt like my brain was breaking down.  It's almost like you can imagine the bacteria drilling themselves into my nervous tissue, eating, thriving, reproducing in the grey matter of my mind...

The unwanted invasion of deadly parasites...I feel like I'm in an Alien movie...there are uninvited inhabitants in my body over which I have little control....

I ended up requiring a pricey phone consult with my LLMD last night.  Even my LLMD, my savior of sorts in this medical nightmare, is unsure of what to do for me.

My symptoms are "too severe"...

"Too different"...

"Too odd"....

The doctor who I have put all my faith into doesn't understand why my body is falling apart piece by piece, like the autumn leaves slowly floating away from the tree down to the cold hard ground. 

He has instructed me to run my bloodwork next week and go from there.  He will be testing me for some different diseases, most of which are rare but could possibly provide an explanation for my steady decline.

The biggest blow in all of this is that my LLMD wants me off antibiotics until he gets the results of my bloodwork....The bloodwork takes 3-4 weeks to run...

I will most likely not be put back on antibiotics until the end of April when I go back to see him in person.

This is a devastating blow to my morale.  The antibiotics are my only hope of ever beating this disease, and even just a week off of them means I'm not killing bacteria.  By the time I am back on them it will be 6-7 weeks off antibiotics. 

I have no choice but to trust my doctor, but it is so hard to feel so helpless, like you have no control over your life. 

This is only something those of us with chronic disease experience.  This total and complete loss of power. 

I guess the only power we immutably have is the power of our faith, and the strength we possess within to hold onto hope and keep on pushing forward.  No disease can take away your fight and your fire.  No bacteria can take away your desire to recover and heal.

That is what we all must remember.  No matter what obstacles and adversity we face in life, we can still have faith that we can perservere.