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New to this group; but not new to pain

Jul 15, 2016 6:16 PM

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)

Jul 15, 2016 9:16 PM

Welcome ArH.... I'm 1980 too...good year!!!

Jul 15, 2016 11:00 PM

Hi and welcome! It seems like you stood in the wrong line too long, me too. Looks like we are over achievers in the line game. Truly sorry that you have so many medical issues but your attitude is awesome. I have a pretty long list of issues and I wonder if the majority of them are a result of having scoliosis surgery in 1981. They used a 19 inch stainless steel rod to repair my spine and they my body protested by giving me a bunch of auto immune (RA, CRPS, leukemia, fibro, ect.) problems. I have had more than enough bone grafting, harvesting and fusions, I share your pain on that one. Every single time the weather changes usually before a meterologist can predict it. Seems that research shows stainless steel (316L) is know to leech into the bloodstream and cause problems. It may be worth looking into for you too depending on what metal they used. I also have bilateral carpal tunnel and yes, it feels like fire shoots down my fingers too. Maybe it was my neurologist, but my nerve conduction test was not real painful I was expecting way worse? Hopefully you will have a better experience this time. Anyway great introduction and welcome to the group! We have a really great group that always rally around and support each other. Pull up a chair and stay awhile :)

Jul 16, 2016 4:03 AM

Hello sweetie..🌹

So nice to meet u. Wow! U r a girl after my own heart! U have had an incredible journey...more than most have done in 50years.

Oooooo i love it... grab life by the balls - and hold on for dear life... u are MY inspiration for the day! 😊

Jul 17, 2016 12:53 PM

ArH, hello there and welcome to our community family. I am so very happy to meet you. I, too, have several deformities and have had 30 surgeries in the last 24 years but I'm quite a bit older than you. I'm 51 and had pain from knee deformities and a shoulder problem from the time I was in school. I was a tomboy and loved to play in gym and after a while the only gym class I could take was swimming and then my school's idea of adaptive gym (pool, darts and reading magazines and writing essays on the stories). When I graduated I went straight to work and continued to work until 2006. I had 2 horses and a brand new car every 4 years. When I couldn't work any more I felt useless and alone and wondered why I was even here. I mean why suffer, right? Well, I found this community, I take care of my aging parents (Dad 87/Mom 80) and drive them to appointments, etc. I also must have stood in the lines you did and kept coming back for more.. I, too, rely on a good sense of humor and try to stay positive. You're a welcome addition to the family and I hope that you settle in and enjoy our company. We're a zany, close knit bunch (I know that I'm a bit cray cray) but you have to be to live on this planet.. LOL!! Sending you well wishes, gentle {{{Hugs}}} and prayers that you are having a good day. 💕🙏🏻🌻😊

Jul 19, 2016 9:03 AM

Welcome ArH! Wow, what an inspiration you are! Thank you for sharing your story.

I'm 54 and have many chronic pain issues, but nothing I was born with, except something at my tailbone & mild curvature in thoracic, but neither really caused issuissuesdo have gene defects that affect my ability to absorb and metabolize meds & vitamin B9, but only found out about them in 2014. Now I understand why I'm allergic to most pain & psych meds! Lol. 😉. I have many chronic issues that really began to affect my life 2007 forward. I have my faith to get me through, and the community support from others who understand the struggles of living with chronic pain. And I love you all!

I loved your description of standing in line & kept going back. Everyone is familiar with the phrase, "The Lord won't put more on you than you can bear." My grandmother once told me, "God knows who is stronger and who is weaker. He gives challenges to those He knows can prevail through it, and become stronger still. He allows them to grow, so they can help others." You definitely are in that category, a blessing to all you meet! Hugs & prayers for you as you await your test results! No matter what you can be sure we will be here to support you through it! 🙂💕🙏🌸

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