Hello, I'm new to this group; but not new to pain. (This is a semi-long intro.)
I was born (1980) and raised in S. CA (USA). After birth, my parents/doctors discovered I had deformed hips (I had a ball but my hip socket was flat) and extra bones in my feet, rib cage, and jaw. I had my first major surgery at 5 - the doctors were able to create hip sockets using the bone I had and some metal. They did both hips at once. I spent almost 2 months in a full body plaster cast and missed most of kindergarten. After tons of physically therapy, I took my first step at age 6! Over the years, I had more surgeries to fix other deformities/problems including: removing some of the metal from my hips, achilles tendon lengthening in both legs, removal of extra bones and foot reconstruction (both feet - a year apart), and jaw reconstruction (twice). By the age of 20, I had 20+ surgeries.
As you might have guessed, I have multiple disabilities/illnesses including: Congenital Myopathy &/or Mitochondrial Myopathy (both are forms of Muscular Dystrophy), Unspecified Auto Immune Disorder (possibly MCTD or Lupus), Fibromyalgia, CRPS, Neuropathy, Learning Disabilities, Impaired Short Term Memory/Working Memory, TBI, Problems with the Frontal Lobe of my Brain, Bipolar II, PTSD, Social Anxiety, Asthma, and probably other things they don’t know about.
I have used various assistive devices to walk/move all my life - Bilateral AFO's/KAFO's (leg braces), Canadian Arm Canes, crutches, walkers, various wheelchairs, etc. I currently use my AFO's about 99% of the time and the Canadian Canes about 70% of the time. The other 30%, I use my manual wheelchair.
As you can see, when God was handing out physical problems - I not only stood in line, but got back in it several times! (I also stood in the sense of humor line). :)
I don't let the above stop me though.
In 1994 (high school) I was introduced to ceramics and took it for 2 periods in a row till I graduated. While in high school, I became fascinated with art (particularly ceramics) and volunteering. During my senior year, I raised over $150,000 worth of scholarships for college and won multiple awards for my volunteer work.
I went to college, majored in Multimedia w/ an emphasis in Film Production and a minor in religion and graduated (2002) with honors! Afterwards, I worked for about 5 years (using my degree, no less) before I had to stop and apply for short term disability. While I was on short term, I applied for long term and was approved in less than 3 months (unheard of, I know!).
After college, I found a local community center that offered ceramic classes and open studio. I eventually took a volunteer job as a lab assistant (2-4 days a month). As a lab assistant, I was in charge of making glazes, keeping inventory, loading and unloading the kilns, running any special firings (i.e. Raku) and helping/supervising open studio.
In August of 2007, I went to a special camp for people with disabilities. I learned there was such things as disabled sports and adaptive sports equipment. I was introduced to handcycling and adaptive waterskiing.
November of that year, (only being on a handcycle once) I did a 60 mile (3 day) race (on PCH or Highway 1 in CA). I came in dead last but had a blast. I continued to race for the next 4 years (still not having access to a handcycle until the race). I was always last but had fun.
When I moved to TN (2009), I found that the nearest major city had a wonderful adaptive sports program year round. I participated in adaptive cycling, climbing (gym and outside), kayaking, paddle boarding, waterskiing, SCUBA, wheelchair basketball, wheelchair ruby, and wheelchair tennis.
While in TN, I had no access to ceramics; so I taught myself how to make jewelry. I also volunteered at an Art Center for inner city/poor kids. I loved that job. I would volunteer 3-5 days a week (depending on how I felt).
Winter of 2012, I moved to Denver, CO. It took me a while, but I finally found some adaptive sports programs. I do adaptive waterski (8 times) in the summer, adaptive cycling (1-2 Saturday’s/month; summer-fall), and adaptive gym climbing (twice a month) in the winter. Since my various disease(s) are progressing, I have less energy to participate in all the adaptive sports I love. Some of them (wheelchair basketball and rugby) are available, but are too far away - I don’t have the energy to drive to the location, participate in a high energy sport for 2 hours, then drive back home.
I am now putting more energy into my art. I belong to a ceramic co-op and up until recently have been very active (we have access to the studio 24/7). I have been doing ceramics for 10+ years now. I used to throw (use the wheel) exclusively but now split my time/energy between throwing, hand building, and tile making/carving.
The co-op sometimes participates as a vendor at local festivals and sales. While I do participate in local sales; I don’t make art for the money. I do it for me. It helps me focus on something outside of myself - which helps me ignore my (now) constant pain.
This last month of not being able to participate in sports or arts is driving me crazy. I hurt my (R, dominant) wrist last month. My Rheumatologist thinks it is a type of Carpel Tunnel - I don’t have numb/tingling fingers, but every time I flex/move my wrist or thumb electrifying bolts of pain shoot through my wrist and up my arm towards my shoulder. He said he has seen this in long time cane/wheelchair users.
After an excruciating month, I see my Neurologist this upcoming Monday. (Yay!) I know she is going recommend an EMG and Nerve Conduction test. (After 5 of them, I swore I would NEVER do one again, but the pain is so bad I’m willing to go back on that promise!). Hopefully, that will show them how to fix this (even if it means another surgery) so I can get back to doing the things I love.
Well, that’s me in a (semi long) nutshell. If you have any questions (or would like to see my online art portfolio) let me know. Looking forward to getting to know everyone soon.
ArH (age 36)