finding balance

No this isn't a post about balancing my work life and my home life, this is a post about true balance. Having arachnoiditis means I don't just deal with the pain, it effects my nerves in my legs, so I have to deal with my legs feeling weaker and more wobbly. I have always feared that I'd fall, and so far I've been lucky that I haven't. I am moving slower.

A few days ago while walking on a brick covered road I held onto my 16 year old son's arm while we crossed the street. He asked if I would eventually end up in a wheel chair. I know that it could be a possibility since some arachnoiditis sufferers do. But we put it to the back of our mind until the day comes that we can't ignore it anymore and we need assistance to get around

This got me thinking about devices used to help us walk, like canes and walkers and about wheelchairs. Why do they look so blah...they are often cold gray metal. We more than likely would have to use them every day so why not jazz them up. if i ever need a cane I'd want to blink it out with crystals and make sparkle. If I have to carry it wherever I go I don't want a cold gray boring thing. They are so depressing

If I ever need a wheelchair I want some of those cool wheels that the ladies on the show Push Girls use. There is a great market for wheelchair art hubcaps.

If you have to live with a mobility device you might as well make it match your personality. I pray that I won't ever need them but accepting the fact now that it could come to that truly helps me appreciate that I am still on my feet today.

grocery shopping and other challenges

Saturday is grocery shopping day. Up and out the door by 10am. I start at the product section and make my way around the store until I reach the dairy section. It used to take me 20 minutes from start to finish. Over the years as pain and stiffness increased and it's now  taking nearly an hour. I hobble thru each aisle, up and down, around, barely able to reach the top shelf, and unable to reach the bottom shelves.

 By the time I'm done with the grocery shopping I'm tired, sore, and in need of a nap. My dignity and pride prohibit me from using the motorized cart intended for disabled persons. My hubby thinks that's ridiculous since I am far within my rights to use it, but he's not the one sitting in the seat, beeping that tiny horn at someone so you can reach the spaghetti sauce.

My life is limited in so many ways. As time moves on and days move forward I'm more and more reliant on others to help me with basic errands and chores.  I can't clean house, so I accept the attempts my hubby and son make to get this house clean. I barely cook dinner after work. I love cooking and baking but it's so hard to stand in the kitchen, stirring and chopping. It hurts my back, legs, and hands. What more can arachnoiditis take from me?

I try not to think this or say it out loud because I think of my arachoiditis like an evil demon standing over my shoulder who will answer me, "What more you say, muahahaha let me show you!!! (thunder claps, lightening strikes, and the lights go black as he storms off to ruin my life).

it's been too long since my last blog post

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...