oh crap
 

Dang MD...yes scary is the word...scary enough to slow down yet?
the stim covering the new discomfort.... a good thing...the plan to back it down a bit...OH yeah….

my legs bzz to my toes too and add in the meds… at times I feel unsteady....the bzz makes my mind think I am wobbly so I have to override my natural inclination to steady myself...at first I was so fearful I kept the stim off…sometimes I miscalculate and trip...for a while I was really scared of falling. As I got stronger in my physical body this brain miscommunication has subsided. I think I just grew new brain nerves to calculate the change.

Lately i am running the bzz way lower and constantly....if it is not a work day I can go with one less Loritab ...this is a big deal for me, mostly because I am finally accepting "the alien" in me.

My son is 42…I am 3 years post MVA…he still cannot accept that I am not the powerhouse woman he had always known. He is adapting as opposed to accepting. We are close and this is a new conversation …I am grateful he is a grown man dealing with this.

do take care...sending the best thoughts…like Mark I very much enjoy your raw honest evaluations
Johanna

New pains gone - new surg scheduled
 

I took a down day. Nada. After a couple days, quads fine. Hey, I did 2.5 miles in 25 minutes with an off balance scs! Back to my one hour walks. Running again? With an optimal paddle maybe. Otherwise no. Sounds like 6/21 for revision. They have a special anesthesiologist for this case. Hoping that I can be KO'ed for wire pull and laminotomy, then woken totally up for testing. I could do it!!!! Better to have this surgeons favorite guy/gal. If i get it done, will have a month to recover before Costa Rica. Should be enough time. Thanks for everybody's support!!!!

dear Johanna
may life ahead of you ease day by day
miracles miracles come in many forms
life be good
life be loved
life embrace us in your gentle
arms of healing
AMEN!

You are so right. Whenever I turn the bzzz higher to cover epigastric pain the stim goes down my legs and they don't feel connected to my body. Walking feels like my legs fell asleep and I am going to stumble.
Waiting for surgery is always hard. Hopefully you'll have time with your boys before you go back into recovery mode.
If I remember right you had to drive south to UCLA or USC. I am in Ventura cnty and avoid trips to the Med centers when ever possible. Worst traffic and major construction at all hours. Good luck.
Costa Rica, what an amazing trip. Everything I hear is paradise. Are you traveling with your family? A trip of a life time.
Hope the fitness walking keeps you in shape for surgery and recovery and then travels.

Sandy K

Amen
 

Thank you Dear Eva

great news
 

Terrific....a month to prepare your body...a month to recover and vacation at the end...I do hope it is a family one.
Floating in water..healing ... the bouyancy will help you bounce those boys around.

I have no doubt you can do the wake up during surgery.
I am excited for you
Johanna

Waiting
 

Hoping they can get me on for 6/21. Otherwise summer plans may not happen. Guess they have to get a patient to switch days.

My current SCS does help with pain, but then I get burn through and need some more channels. No real functional improvement. Functional improvement was my primary goal. The well placed one doubled my standing & light walking time from 3-4 to 6-8 hrs / day.

The most annoying part of the pain are the secondary effects. Insomnia, pre planning everything so that I don't burn through excessively at work or social events. Walking my hour 5 times a week and some play with kids.

If i get to that higher level, yes i will have limitations, but much easier to work around them.

22 days (i hope) to my encore

Booked 6/21
 

Now i Just wait. A couple visits with pain psych will hopefully do me good. My sense of humor still comes thru at work as I got lots of laughs today. Some days, when I hear many stories of adventures & trips - harder. Much harder. But if this goes right C.R. for this neurological oddity & his family!