This is really a bit of a response to some comments on: https://www.joeuser.com/forums.asp?MID=3&CMID=3&AID=10569#30806
The first comment was from stevendedalus "The problem is that those of us
blest with a deep sense of self-responsibility don't ever seem to face the tough
challenges that others less gifted are helplessly trapped in." After which
Brad gave a glimpse of "me".
I usually don't say much about my life because I don't *ever* want anyone to
feel sorry for me. I don't want sympathy. I am not a victim. I
make the most of my life, and define myself. I don't let "things that
happen" define me.
As I stated earlier, I grew up in a small town middle class family. I
had no "benefits" other than my family. On the flip side, I had a lot of
"bad" things that have happened.
I was sick for most of my childhood. I couldn't run as I wouldn't
be able to breathe. It wasn't asthma. It was something that would
reveal itself much later in life. A few years later I started to grow
"bumps" on joints in my body. I was sick, tired, and in pain. The
lumps ended up being rheumatoid nodules. The cause was rheumatoid
arthritis. I was 13.
I had to have surgery to remove the nodules as they were effecting
movement. I was on major pain medication. At that time, doctors
believed that arthritis should be treated with inactivity. I was excused
from gym class and told to relax as much as possible. I didn't listen to
them (which ended up being good for me) and continued to be a "kid". I was
told that I would be in a wheelchair by 21 and I should make plans for
that. I was labeled as "disabled".
At 15 I started having other problems. Odd problems that nobody could
figure out. At 17 they realized that my thyroid was barely working.
It was cystic and part of it needed to be removed to rule out cancer. That
was the first thyroid operation that I had. I missed part of my Freshman
year at University because of it. I was sick. I was considered
"disabled" and was allowed to have a car on campus even though I was only a
freshman. I never got myself back together. After 1 1/2 years at
school I was dismissed. But, it wasn't over. I knew I was on my way
out, so I made arrangements with another school and started where I left
off.
I battled arthritis and thyroid problems for my entire school history.
I was in pain, tired, and never felt "right". But, I also wanted to have a
good life, so I continued on. I eventually met my husband while at school,
moved to a different city (supported myself on little cash), got the job I have
now (almost 9 years ago) and kept on working. I had some very odd
things happen to me (like losing vision) that nobody could explain. Odd
things happened, but they were really just warnings to what was "really"
wrong.
We then decided to start a family. The first part of my pregnancy was
perfect. The final 3 months were hell. My health was degrading and
they didn't know why. I had preterm labor and had to sleep in a recliner so
that contractions wouldn't start (even on medication). I was induced 3
weeks early due to hypertension and other health issues. My baby was
healthy, but I was not.
This started the first full "flare" that I experienced. I lost all my
hair- in big chunks. I had really long hair. It was very
unnerving. My thyroid levels could not be regulated. I had
rashes. I had signs of kidney disease and I had a mini-stroke. There
was finally enough there to know what had plagued me all my life- Systemic
Lupus. Again, for the third time, I was diagnosed as "disabled".
Systemic Lupus is not a "treatable" disease. It effects many parts of your
body at different times.You never know what will happen. You could lose
hair, go blind, lose mobility, have slurred speech, etc. You don't know
what will hit you or when.
When I was diagnosed, I sat and really had a look at my life. Yep, this
wasn't going away. I could either give in and be defined by it, or I could
just "deal with it" and continue on. I chose the second option. I
have missed work. I use my vacation days for doctor appointments, surgery
(I later had to have the rest of my thyroid removed), and times when I can't see
or something like that. But, I work. I also have a part time
photography business. I stay active. I enjoy life. Lupus is
part of my life, but it is not who I am. It's an inconvenience. It's
something that I deal with. My thyroid is still unregulated. The
doctors can't seem to find a brand of hormone that my body will use right.
My arthritis still gets me (I'm facing ankle surgery currently as some new
nodules have decided to claim my right ankle). But, that is life.
It's not fair, but life isn't fair.
So, that is where I come from. I'm not somebody who has been
"unchallenged" in life. I am not somebody who just fell into some great
life and can have these high ideals for everyone else. I know that people
can live beyond their problems. Take the challenges that face them.
It takes determination and a will to overcome your issues.
Thank you Brad for prompting me to write this. Thank you stevendedalus
for the ability to see that not everyone is the same just because they have a
certain view.