Let me explain the statement about "some quality
to my life". With the drug cocktail, I am usually able
to take care of my personal hygiene. There are days when my
wife must help me get dressed. I can usually feed my animals and spend some time outside on my back deck. I can
drive to town (12 miles) on short errands, but with a
maximum time of one hour. I spend time reading on my
computer and working on projects like this one. Often when
my afternoon pain gets high, I require a short sleep. I
can't stand up for very long so I don't cook anymore. If my
wife is out, I survive on cereal and sandwiches. I have no
normal warning "urge" when I need to void bowels
or bladder. I can hold my bladder and bowels just long
enough to get to the bathroom…… most of the time.
My pain averages about 6 or 7 daily. It can all too easily
be 9 or above at the drop of a hat. I use my cane 90 percent
of the time. I have no feeling in my pelvic area, the
outsides of my legs, and large areas of my feet. All
of the pain I described earlier, is here to stay. Right now there does
not seem to be any medical options for
treatment. I am going to be able to start a walking regimen
in a heated therapy pool, soon. My wife's family and my
parents bought me a
zero gravity recliner that is a big help. My animals keep me
going and provide some light activity on a daily basis.
What REALLY keeps me going, through thick and thin, is my faith. I
know, in time, God will take me home. But in the meantime, I
stay as active as I can with my church. I also want to reach
out to others with Arachnoiditis, CES and other similar conditions.
Currently, I live in middle Tennessee
raising Alpacas. Several
rescue animals including two Boston Terriers, a couple
Alpacas, and one very lovable but crazy Llama also call this
home! I sit on the administrative board for a very active church. Though my body
is often wracked with intractable pain, I find it very
helpful to keep my mind busy. I am blessed to have a
strong supportive family, and an understanding spouse.
My hope is that as we share information and educate
ourselves, we can also share knowledge with the medical
profession, government and the public. Many days it is
difficult to feel hope, yet I do hope there will
someday be a cure for these diseases. Until that
time, we will encourage one another through compassion,
friendship, and prayer. Those of you that read my bio and feel that I can help you
in any way, please feel free to
e-mail me anytime even if it is just to say hello. Welcome to this site
dedicated
to Living with Arachnoiditis. God Bless. Jon