Part Mom/ Part Robot…sort of

The date Friday October 13, 2000 is one that will forever be remembered as the day that changed my everyday normal.  That morning started off as any day. I got up went to work, I processed medical and dental claims for an insurance company.  The day went by as any other normal Friday and at 4:30 my then husband was there to pick me up and take me home.  I had talked to my mom and we agreed to met up with her over at my grandmothers after we picked up the kids.  When we got there my mom was sitting in the living room, with my grandmother and my great grandmother, sipping coffee and watching television.  My kids, 5 and 2 at the time, quickly ran over and started passing out hugs.  My mom and aunt were going to a local fall festival the next day and asked if she could take the kids with her.  I told her that would be fine I just needed to run home and pack them an overnight bag.  We sat and ate a piece of cake, my grandmother insisted, before we went to go pick up the kids things and that’s when my 2 year old son spilled juice down the front of his shirt.  I grabbed a towel and dried him off as best as I could and gathered up our things to leave.  My mom quickly told me, “You can’t not take the baby out with a wet shirt in this weather” ( it was in the mid 60’s just for the record)  I tried to reason with her but she had back up both my grandmother and great grandmother.  Now I could argue with my mom but when it came to arguing with my grandmother or great grandmother that was something that just did not happen.  So I said fine and asked if they would mind watching him with we ran home. They also offered to watch our daughter while we were gone so instead of taking either child they both got an extended visit at grandmothers.    To this day I am thankful for the spilled juice on my sons shirt.

 

As we drove home we made plans for the evening seeing we would not have the kids.  We talked about our days and made other small talk.  We arrived at our driveway about 30 minutes later.  When we got to our driveway there was a few cars coming down the road so we had to stop and wait for the traffic to pass, and that’s when it happened.  I was saying something about going to dinner and I heard my then husband scream, “Hold on” before I could ask what a speeding truck slammed into the back of our car and came up the passenger side, my side.  The next few moments are somewhat a blur but I remember the fireman asking me where the baby was over and over.  I managed to get out “they are with my mom”  I was later told that my son’s car seat had been smashed up and under my seat from the impact.  If he had been with us he would not be here.  Thank you Jesus for spilled juice.

Over the last 16 years I have had countless shots in my back, arms, neck and legs stemming from this accident. The guy hit us goes 55 miles an hour, we were sitting still. All because he saw a dog running down the road.  I have had more nerve blocks, RFA’s (radio-frequency ablation) procedures and stellate ganglion block injections than I can count. And that does not count all of the other pain injections. I also have not one but two SCS (spinal cord stimulator) devices (one for my neck, upper back and arm and one for my lower back and left leg) that I have had implanted and replaced in six different surgeries.  The first SCS surgery was done in June 2004. The first SCS had a charger that needed to be plugged into the wall.  So every few days you could find me sitting in our oversized chair with the one end of the charger band wrapped around my waist and the other end plugged into the wall socket.  Yes, I said plugged into the wall socket.

The kids thought it was awesome that their mom was part robot. In fact they often had friends over and would ask “Mommy can you plug yourself in my friend does not believe you are part robot, please”  Now I’m not actually a robot but I if my kids thought it was cool why not go with it, right. I had spent a few years in so much pain I used a cane or walker to get around. At one point I was told I would be in a wheelchair by the time I was 35.  The stimulators gave me a way to have a life back. With them I was able to function, I was able to walk, and get around.  I was even able to write again. My left hand had so much nerve damage I could not hold a pen or pencil much less write with one. The downside was that the left side of my body now always tingled, by that I mean have you ever had your arm or leg fall asleep?  You know that annoying tingling sensation you get?  You try your best to shake it wake but you just can’t. Well for the last 13 years the left side of me body as felt like that, all day and all night. After about 6 years the first two stimulators had to be replaced, by that time technology had made big changes and the new units were rechargeable with a portable charger.  You plugged the charger into the wall charged it and then wrapped the portable charger around your waist and you could go and do whatever without being stuck at the wall socket for hours.  Much better, but still a sight to see. Jump forward to this past June it was surgery time again.  My stimulators needed their batteries replaced.  When I went in I was told that there had been another break through with the stimulator design and I would be getting new slightly smaller SCS units to replace the ones I currently had.  These would not require me to charge them (they have some kind of funky battery that does not require charging) and I would have an Iphone with an app to control the amount of electrical stimulation I would receive ( There’s seriously and APP for everything nowadays) and both units could run off the one phone.  I had the surgery and recovered well.  But over the last six months my left arm would just fall asleep. I could be doing anything like driving, or washing dishes, or fixing dinner and my arm would just stop working.  So yesterday at my 6 month post op appointment I asked the doctor about it. He said it could be a result of over stimulation and asked if I cared to see the programmer, I of course agreed.  The programmer came in and had me lay down on the exam table.  With he IPad hovering over my stomach, just like something you would see in an old Star Trek episode, he ran a scan.

 Why am I telling you all of this?  Because yesterday I was introduced to what they call BurstDR.  It is a new program where the electrical leads in my back can now send a message to my brain and tell my brain “This part of her body does not hurt”  it acts as a blocker.  For the first time since I had my stimulators placed my left side does not feel all tingly. It feels, well nothing.  I can turn my head without getting that little electrical shock because I moved to fast, I can hold my husbands hand without jerking, I slept without rolling over and getting that little jolt because I had my head in the wrong position.  For the first time in a very long time I feel almost normal. Like really normal.  Thank you Jesus for advances in medicine.  I was the first patient at my doctors office to have two stimulators so I am the first patient to have two stimulators running the new BurstDR program. Kind of neat I think.  If it was not for the SCS I would be in that wheelchair the doctors talked about 16 years ago.  But thankfully today, a little over 40, I can still stand on my over two feet.  I am so thankful for all that has been done for me to keep at the level of health I am at.  Nerve damage,arthritis, deterioration of the spine and RSD (Reflex sympathetic dystrophy) are not things you can physically see so many people assume I am OK. And I’m glad they do.  I don’t want people to feel sorry for me or take pity on me. I just want to be me. They don’t no the pain that I live with daily.  They are not here to see the mornings I can’t get out of bed or the days I can’t dress myself or the days it takes everything out of me to just wash my hair.  I don’t complain for if I did that’s all I would get done.  I hurt daily, but God is good. He has placed wonderful doctors in my path that have provided ways for me to function on a daily bases.  I am truly thankful.  And who knows, maybe one day I will be back to what society deems normal the advances are coming quickly in the medical field.  For now I am going to enjoy laying me head on my husbands shoulder and take in the complete beauty that I can do so without being shocked.  Robot mom 2.0 at her finest lol

From our beautiful chaos to ours just because you can’t see someone else’s pain does not mean its not there.  We are all going through something some of us just choose to smile through it.