Good morning. My name is Dani and it is very nice to meet you. I am glad you found the Healing Well Community. It is a wonderful place for resources, knowladge and support.
I have adult onset progressive scoliosis. It spans a rather large section of my spine. It began when I was 27. I am 30 now with multiple curves. I began a singular curve (10 cobb) in lumbar. Now, I am multiple curves. Primary progressive levoscoliosis T10- SI (50 cobb). Secondary T4- T9 (15-20). "Possible" presentation in my C spine. Of course, all the usual suspects that come with it, sclerosis, stenosis, narrowed space, facet arthropathy.. you get the idea. I am sure you know all to well what accompanies spinal deformities.
I understand the multiple "types" of pain that come with scoliosis. I hate that there is one pill / treatment for each "type" of pain, and it is frustraiting to no end! We are literally expected to just take our meds, and try to pick up the peices of our lives. Just between you and I... you would think they would have advanced in treatments with so many people suffering with some form of curvature of spine. Arthritis, disk degenration, age related, adolescent onset, idiopathic... MILLIONS of folks, yet the treatments are still archaic at best.
As you well know, many problems arise with rods. Most notably herniations, arthritic degeneration, disk degeneration. There have been remarkable advancments in stem cell technologies, but even that, is still in early stages of development. Very little can be done. Aside from revision....
I too have rather young children. My chores and mother duties are done in rather unique ways. My husband and I spent an entire summer re modeling my home. Here is a post about what I did to make my environment easier to manage.
The only thing I can suggest to you, at this point.... Is to try to make your home life as easy as possible. Change the things you and your child do together for closeness time. My daughters and I have many "sit down" activities now. Sure it isnt riding bikes or camping... but really they just want time with me where they have my undivided attention. I can only do so much physically so I have to be creative with games, projects and outings.
Early on when they suspected that I was progressive... I was sent to a pain psychologist. This was done so that I could understand that I would be in pain the rest of my life. I had to "re-build" myself from the ground up. It was alot of hard work, and at times, seemed impossible. Who I was, what I liked, my hobbies, how I lived my life, my goals, my parenting...... behavioural therapy is frustraiting at first, but worth it.
Most of all I want you to know that you arnt alone. I know parenting presents chronic pain patients with... endless obsticles. It isnt like we can "Call in sick" as parents. No matter how we feel or how much pain we are in, we have to tend to our children. I dont have family of my own so I have to be creative. Also, I rely heavily on our local community center for activites that I can't physically do. "twinkle toes" (toddler ballet), "tiny tumblers".... you get the idea.
I am sorry. I get chatty on my morning off! Hehe. It was very nice to meet you. I look forward to knowing you better as time goes by. Stay strong.
TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood