Neuropathy and posture….

This has been a problem since I was in high school, but I didn’t know why and I remember our mother showing us how to walk around with the book on our head and keep the spine straight, pelvis tilted correctly and legs straight… well, it didn’t work that way for me at 17 and It won’t work for me now, even more so….

I have had doctors tell me my pelvis was titled… Wrong… I had one leg shorter than the other… Wrong…. I had curviture of the spine… Wrong…. Bone Disease Pagets…. Wrong….

I know there is more things they told me that I knew as soon as they said it, they were wrong… Why???

I didn’t meet the profile they should have been following… You know, guidelines… 

I stayed relatively active until surgery this year and that was when all the docs got involved and we got proper diagnosis and the one that struck the biggest chord… Peripheral Neuropathy and Autonomic Neuropathy….

The Autonomic was not a surprise… I have been complaining for about 20 years about seeing double, blurred vision, yada, yada, yada… and got no place… I had my stomach scoped way to many times and more invasive tests than you can imagine, some so painful, I wouldn’t send my enemy for it… and again… none of the doctors got it right and no one sent me to Neurology!!! 

Peripheral neuropathy, well, that one I knew something was wrong, when I fell off the balance beam in high school and it was only a foot off the ground….

That little problem has taken its toll, because of all the wrong diagnosis and these are the trap falls I fell into and am now fighting to correct…

Posture… I still have no clue what way to tilt my pelvis, but I follow the standard protocol that Physical Therapy would, so I work at keeping the spine in its proper position and that means the pelvis and then we get to the legs and that is a problem…

You see, I noticed after my surgery this year and had to be down for 6 straight months… that I walked with my knees bent and did not extend my legs and make use of the long muscle… Once I got the neuropathy diagnosis and the surgeon gave me the all clear to work out… I started correcting that and I am actually getting feeling back in my feet… I know when I cut them or step on something sharp…

As for the tingling and numbness, not much I can do, the exercises to make the back stronger and the exercises to make the long muscle stretch out and relax, seem to help… My balance is still off and not from the dizzy spells that come from the Ankalyosing in my neck… It has to do with being able to feel myself move my legs or I have to really pay close attention to what I am doing… If I do that, I keep my balance… BUT!!!

If I am going around doing my day and not focusing on what I am doing…. The body will betray me every time… because the nerves and the muscle and the brain… are not working together because of the damage done and no medical care follow-up…. So flat tennis shoes, rarely any sandals, no heels…. and hubby always with me… until I get clearance on my eyes… and balance… so no driving, unless its an emergency… at this stage… I can’t trust my body to do what it should… Too much of it isn’t responding… and not from lack of trying… there is a real disconnect between the brain and my limbs…

If I had got treatment as a child, PT would have been in the mix, to build the muscle and keep the line of communication going between the nerves…

When I was in the military at the age of 24…. I was already showing signs of the peripheral neuropathy outwardly… and every doctor got it wrong… because none of us knew I had been the victim of domestic violence and suffered multiple TBI’s, see I am still making excuses for doctors who still should have known better…. big time sigh on that statement…. and the head bangs along with it… yea!

For me, as a patient, IF I had been informed of what had happen to me, I would not be looking at the future outcome that is coming my way…. Sorry, only can say so much… Mommy and the family read this blog and frankly, they do not deserve to know any more than strangers know….

TimesUp #MeToo WhyIDidntTell

I Remember… Margie….