Stacey R. Jones

I am a face of AS.  I am fairly certain my symptoms began in 1988 after the
birth of my first child.  I was 19.  I couldn’t sleep at night without a
pillow between my legs, to separate my hip bones, because it felt like they
were pinching in the middle.  I know now that was a sacroiliac issue.  I
didn’t have insurance, so I pretty much just got used to it.  In 1990 I
joined the National Guard and breezed through basic training. I think the
tough physical training helped strengthen core muscles which in turn lessened
my pain.  In 1992, while pregnant with my 3rd child, I had severe lower back
pain and did PT for the last few months of my pregnancy.  After my son was
born, I still had back pain, but it was tolerable.  Then in 1997 I started
having neck pain.  I thought it was just muscular, and tried massage,
stretching, and lots of OTC pain meds.  By 1999 I was in agony, and finally
sought medical help. I was referred for an MRI and that showed a herniated
disc in my neck, which was almost completely pinching my spinal cord closed.
I had a fusion of C5/6 the day after meeting with a neurosurgeon.  She did
say I had osteoarthritis and DDD, and it was likely I’d have another blown
out disc within 5 years.

I again went through PT and got on with my life.  I still had lower back pain
but just attributed it to strain and overuse, and other than an occasional
massage and chiro, I dealt with it. I went overseas with my Guard unit in
2003.  We had anthrax vaccinations which I reacted to with severe joint pain
for days after each injection.  I was told this was common.  When I came back
from overseas, my outprocessing physical showed I had otosclerosis.  Kudos to
the Dr. who determined that based off my hearing test!  I had surgery for
that in April 2005. Shortly after that, I again had neck pain, and knew this
time exactly what was wrong, but tried alternative treatments before having
surgery. Chiro and PT helped some, but not much. X-rays did show classic
progression for DDD, and was visible in my lumbar spine.  I began to receive
chiro treatments for my lower back as well as my neck. I started taking
supplements at this time, but honestly, I couldn’t tell any difference.

I had my second cervical fusion (C4/5) in Nov 2006, almost exactly 7 years
after the first. Shortly after this, I noticed I was having a lot of hip
pain, along with the chronic lower back pain.  I also developed severe
pitting edema in my legs, day in and day out.  Test after test came back
inconclusive, and it was just attributed to having a desk job and sitting all
day, and poor circulation.  HCTZ helped with that, and I made sure I moved
around more during work hours. At this point, I was still just taking OTC
pain meds and visiting the chiropractor for pain management.  In the summer
of 2008 I had to pack up and move my mother’s belongings, and there were days
the pain was unmanageable. I figured it was just from overuse, and that once
I was done with the moving, it would get better.  It didn’t.

In the fall of 2008 I wanted to get in better physical shape, thinking that
would help my back issues, so I started the p90x workout program.  Within 3
weeks I was again in severe pain.  I was referred to a pain management
specialist because of the history of DDD.  A CT scan showed spondylosis,
arthritis, SI joint dysfunction, and bulging discs from L3-S1.  Yeah! I had a
diagnosis, a REAL condition; definable. And progressive.  And incurable.  I
was prescribed muscle relaxers and hydrocodone, and regularly scheduled
cortisone injections of the SI and lumbar. I did not seek out additional help
for PT or nutrition. Even though the pain continued to get worse, I had been
told that was to be expected, and the hydrocodone and injections kept the
pain manageable. I continued to run and work out and stay in fairly decent
physical shape and pass the annual fitness requirements for National Guards.
I mentioned to my pain management specialist that I couldn’t understand why I
could still run without incident, and even felt GOOD when doing it. He didn’t
really have an answer for that.

This summer I was activated with my Guard unit for sandbagging operations for
the flooding in ND.  While the first 3/4 days were excruciating, by the end
of the week I was adapting. Then in September I sold my house and had to pack
up and move, and I had to do it in a hurry.  I wasn’t very careful and I was
pretty sure I had herniated a disc, because the pain was unbearable and the
pain meds weren’t helping. My right leg and foot started going numb.  My
doctor scheduled me for another CT scan and hip x-rays.  A couple weeks later
he showed me the scans, compared them to scans from 2008 and explains to me I
have AS, with fusing visible from L2-S1, and the worsening of the SI joint.
Lots of bony spurs.  Thankfully no herniated disc.  I haven’t had the HLA B27
test yet, and I haven’t seen a rheumatologist, I am still coming to terms
with the diagnosis, and connecting all the dots from all the issues I’ve had
over the past 24 years. The AS even explains why I’ve never been able to
donate blood: my iron was always too low.  And why I feel good while
exercising-it’s common with AS.  I know that my condition will never get
better, and most likely will only get worse.  I look forward to trying
different courses of action for pain management. I look forward to discussing
this condition with others who suffer from it. I know I have to give up being
in the National Guard, and start a new career. I know I still have to get up,
go to work, go home, take care of my family, and deal with my pain, and come
to terms with the fact that the pain isn’t ever just going to go away.

I am a face of AS.

North Dakota United Stats of America

One Response to “Stacey R. Jones”

  1. Dear Stacy,

    Thank you so much for submitting your story. Thank you so much for the sacrifice you have given for our country.
    It is an honor to have you.
    Sincerely Cookie

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