OOPS!! Certainly wasn't intentional to NOT write on this
blog. It seems like when your days are the same, day in and day out, it ends up
feeling like the movie Ground Hog Day. I felt like there wasn’t much to blog
about, unless you want to read my take on reality TV.
Pain has increased since last August. More, what I call
nervey symptoms. I get the joy of numb toes, numb tailbone area, burning feet and shins/knees, my
legs feel weak but tight at the same time. It's a wonderful mix of unexpected
symptoms that come and go. Never really know if a flare up is temporary or your
new normal.
Let me back up a bit to explain what arachnoiditis is. Arachnoiditis
is inflammation and scarring of your nerve roots, usually caused by surgical
procedures (mechanical induced) or by injections into your spine, epidural
steroid injections, epidurals for childbirth, or like me, chemotherapy for
treatment of cancer. (Chemical induced ) It causes pain, muscle tightness,
spasms, numbness, tingling, burning…so many other symptoms that are reported by
fellow Arachniacs but not truly recognized as connected by the medical
community because our condition is under research.
The only treatment is pain management...which is joke since
there are so many doctors unwilling or unable to write for pain meds due to
laws and regulations, which are supposed to be in place to hinder misuse and
abuse...but I digress…
Opiates help the pain some, so many Arachniacs accept the little
pain relief it covers. Anti-seizure medications and anti-depressant medications
are used off label to treat nerve pain, but they are also inadequate and have
many many nasty side effects that we have to choose between the pain or the
living with side effects. You ever see one of those commercials for medication?
Notice how the first few seconds the actor tells you what the medication is and
what it’s treated for then the last ¾ of the commercial is a bunch of side
effects with big words that make the treatment sound worse than the disease…yeah
that’s our dilemma.
My days are the same because I am limited at what I can do.
It's very hard to exercise. An increase in activity can cause increase pain. I am
working...while it is very hard to do...I push through it...I have a family to
support. But I can do very little outside the house. If I want to, I have to
plan very carefully...and can't do things 2 days in a row. For example if we go
to a park for a picnic on a Saturday, I have to rest on Sunday. I also have to
pace myself, walk slowly, and rest when possible.
I’ve dealt with this condition at many levels since 1992. I’ve
come to know its characteristics and have come very familiar with this beast. I
pray it's laid to rest, whether by a miracle from heaven, or by a cure found by
a physician...well both would be a miracle from heaven...
