Time Flies

Time flies when you're having fun...it also apparently flies when you're not!  That's not to say this summer has been totally awful.  I have had some fun, but it has been a rough summer health wise.

In my role of human guinea pig, I've tried several different combinations of medications, an invasive treatment and a week of self monitored pain medication detox.  There was the one that made me sleep all the time, get home from work, eat dinner and be in bed by 5:30 - 6pm.  Then there was the one that kept me up till 2am.  But they both made it hard to get up in the morning, go figure.  The invasive treatment consisted of a regular nerve block with a twist.  Instead of just injecting drugs with a giant needle, under x-ray, in my back, in front of my spine ... they ran a little radio frequency wand through the needle and burnt some nerves.  So the next week, in order to judge the success of the procedure, I began stepping down my pain medication until I wasn't taking it at all.  All by myself with no Celebrity Rehab facility!  Oh what a horrible feeling!!

After my system was clear of the pain medication, it was obvious that not only did the procedure not stop the pain in my right foot/ankle/leg, but the pain had spread to my lower abdomen and back.  My left foot/ankle/leg has also begun small pulses of the burning, electric shock, sandblasting, jellyfish stinging, caught on fire, whatever kind of sensation you can understand that my right side endures.  So back to the doctor and back to the pain medication.

My pain doctor is wonderful.  He's the only person I know in real life (I have lots of online friends who understand) other than my husband that truly understands the kind of pain I'm in, how it affects my body and just how bad my condition is.  So we are trying a new formulation of an old anti-seizure medication that I couldn't tolerate.  Apparently they fixed whatever it was that caused the adverse reaction.  I also see a psychiatrist.  He's not so much the talking kind of shrink but he manages all my other medications.  I used to have an internal medicine doctor do it, but it was clear he had no idea what he was doing!  So once a month I go see my shrink and we see how my meds are treating me.  After the two that made me sleep then kept me up, I suggested a third and he agreed.  It's nice to feel like you have a say in your own treatment!  So far, I think this one is going to work out pretty good. 

I've done a lot of research on my condition and learned a lot about the central nervous system and autonomic nervous system functions.  Especially since I've got a lot of things going haywire like panic attacks, digestive system and heart rate.  At this point it would appear I have what they refer to as "full body CRPS/RSD" because it's affecting my organs.  Just think of your "fight or flight" response when you're almost in a car accident, almost fall or going over the first hill of a roller coaster, the adrenaline rush you get and your heart rate increases, your palms get sweaty, etc.  Imagine if that feeling happened to you without provocation several times a day, every day and night, forever.  Welcome to my world.

So I carry on, sticking to the medication route (what I always wanted to avoid) and staying away from the invasive route for awhile (no spinal cord stimulator implants thank you).  Trying to eat healthy, taking quality vitamins designed for my blood type (shameless plug for Right 4 Your Type), wishing I could exercise but thankful I can at least make it to work and back.