Who me? Well, as the title indicates, I’m an architect. I live in the Pacific Northwest, have one Significant Other, creatively referred to as SO, and one large dog, equally creatively referred to as Big Dog. SO has lived with me since 2006, but we have been “a couple” since 2001.
My passions are travel, kayaking, gardening, and international service.
I am “childless by choice,” sort of. A better way of putting it might be that I just never got around to having children. However, now that SO’s son has become a father, I have become a grandmother. Not something I ever expected, especially not while still in my 40’s, but stranger things have happened.
Some days I think my job completely defines me. That’s a scary thought, but work and volunteer work are the mainstay of my life. I’ve tried to limit the volunteer stuff, but somehow it always seems to start creeping back in. I am active with a pro-choice organization, my Rotary club, and the local planning commission. And I just agreed to help design a laundry building for a remote village in Guatemala.
If it’s not my job taking over my life, it’s my health. When I started this blog I said I didn’t want it to be all about my health. But I haven’t succeeded with that goal so far. I admit that maybe it isall about my health. At the least it’s a place where I can rant, rail or just document what’s happening and how I’m dealing with it. That saves the people around me from the tedious and boring diatribes. But I’ll try to give the “elevator speech” version of it here once, and then hope not have to go into all these repetitive details elsewhere in the blog, although I’m more than happy to answer any questions. I just don’t want to be tedious.
Since March 28 of 2006, I have been a victim of Transverse Myelitis. Until that day, I was one of the healthiest people I knew. Until that day I had never heard of Transverse Myelitis. Like any major illness does, it has taken over my life. I am still trying hard not to let it.
The final diagnosis is that I have an unusual form of Lupus that causes recurrent Transverse Myelitis. TM is a rare neurological syndrome caused by inflammation of the spinal cord. It is estimated to occur in between 1 and 5 people per million. In many cases a cause is never found, but it is known to be autoimmune in nature. The overwhelming majority of cases are one-time occurrences, although dealing with the results is often a life-long struggle. Depending on the severity of the attack, residual symptoms range from mild numbness to complete ventilator-dependent paralysis. Fortunately for me, my case has been more on the mild side.
Unfortunately for me, my case is one of the rare recurrent ones. The initial attack left me with “only” numbness from the chest down, occasional pain, and a variety of other weird sensations. Eighteen months later, there was another attack, actually re-inflammation of the original spot in my spine, but this time it was much more severe, and my right leg was paralyzed. For about three weeks I lived with the fear that “this was it.” I did not know if I would ever walk normally again. I wasable to walk with crutches or a cane, by locking my knee and swinging the whole leg around from the hip. Fortunately, steroids were able to reduce the inflammation quickly enough and the motor nerves were not permenantly damaged. But the muscles were so atrophied after a month of disuse, that I was too weak to walk normally, and I am still (seven months later at this writing) doing physical therapy to try to get the strength back and walk without a limp. The week before the attack I was running miles at the track. Now I’m not able to run more than a few clumsy steps.
After two years of doctors, second opinions, consults, labs, and research, the final conclusion was that my sypmtoms are caused by Lupus. While I have no other manafestations of Lupus I have some antibodies that are very specific to Lupus. So while my disease is called Lupus, the symptoms that I live with day-to-day are those of MS. The numb feet, burning pain, the “MS hug” (squeezing or banding feeling around the torso and legs) as well as some level of fatigue and brain fog are all familiar feelings to those with MS. But I don’t have MS.
It’s a bit frustrating – at first I didn’t want to have a walkathon disease. But now it gets lonely when I can’t really be part of the “MS community” or the “Lupus community” I’m just this freak. Story of my life – always a loner, never really part of the gang.
OK enough poor me. I hate playing the victim. Being a “strong woman” is an important part of my self-image, so dealing with being weak and dependent has been an emotional as well as physical challenge.
