A.S. Face 2033: Kristen Ray
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| 2007 deep sea fishing, Maui Hawaii |
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| Summer 2009 – weight about 120 pounds |
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| Summer 2009 – weight about 120 pounds |
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| 2010 having to wear a mask at work during flu season while taking Methotrexate |
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| 2012 last dirt bike ride with my brother |
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| 2013 last nursing job |
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| Second Date 2013 |
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September 2013 first fusion surgery. Since my neck was already
fusing they needed to correct a bulging disk before the AS fused the bulge in place. |
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2015 side effect of Methotrexate is sunlight sensitivity. Tankini rode up
while body surfing showing some skin. By the time the blister finished it
covered the entire red area, requiring care from wound care
physicians and skin grafting for months. |
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November 2016 ulnar nerve replacement surgery, left elbow. Woke up one
morning and the left hand was numb, the nerve had slipped out
of place off the elbow because of the AS. Had to stop Humira
and Methotrexate for 3 weeks before and after surgery.
Humira never did work again. As of 2018 still looking for a
working biologic to prevent further damage from AS |
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| October 2017 – highest weight 185. Time to start Keto diet |
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| 12/2017 – Girl Scouts in the Christmas Parade |
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| 12/2017 – Girl Scouts in the Christmas Parade |
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| Christmas 2017 |
My journey with Ankylosing
Spondylitis (AS) has been very long, my first memories of symptoms starting at
around age 6. Back then AS was only considered to be a man’s disease, it wasn’t
until the last 10 years that it has been realized that AS affects just as many
women as it does men. It has also been noted that AS can also present
completely different in women than it does in men, as in men it is the
traditional start of the SI joint fusion, but in women in can start in the neck
and upper spine. This fight against AS is going to be never ending. There is no
cure. As of right now, I have not even found a working biologic medication to
slow down the process. As I am forced to alter the way that I handle my disease
in a way that makes it more noticeable to those around me, I am also being
forced to handle those feelings that I have been hiding for so long. Those
feelings that I usually only speak to those in my support group about: anger at
the doctors that dismissed me for so long while my body kept getting worse,
anger at the doctors that still dismiss patients because patients with chronic
illness are time consuming and don’t fit in a 5 minute window, sadness at all
the things that I can’t do anymore, frustration when I don’t make as many plans
as I want or have to cancel plans a lot due to my health, and by far the
biggest one for most of us: anger at the comparison to where we used to be in
life or health 10 years ago / 5 years ago / hell, just 1 year ago and realizing
just how fast things are slipping away from us.
I was forced to make some difficult
choices so far, this year. One choice that I am looking at is going back under
the knife for a full neck fusion from C2-T1 including a metal plate on each
side of my spine. However, the spinal cord swelling has now passed the point of
what my usual orthopedic surgeon can handle, and he recommends that I seek help
at the teaching hospital. After a single visit for some testing, where the
surgeon sat in the back reading a magazine while two students played guinea pig
on me, I decided that I was too scared to have surgery in that fashion and
would have to try something else. So, I carved out my plan for the year 2018
not quite by recommendations or suggestions, but by necessity.
First thing is to get the
inflammation down in my neck, so that will take massive doses of prednisone,
Higher doses than I have ever taken before. That will also require me to start
exercising the neck area. I am going to have to start exercising everything, no
only to keep it all moving now, but to also keep off the excess weight that the
prednisone packs on (Joined 2 gyms – 1 near work and 1 near home). As I begin
to work out, it causes me to flare up even worse at first, I am noticing. I am
going days without sleep (called Painsomnia). This is causing me to make some
unusual decisions at work and at home, and overall annoy some people with some
of the things that I do unintentionally. I have also decided to go back to the
chiropractor even though it is not recommended for AS. I must try to get some
sort of movement or relief from any sort of care that I can at this point. He
is not allowed to manipulate me, because if he does I will fracture very
easily. But he does have special tools that he can try to see if there is any
hope at all.
I also have a lot of mental work.
This year is going to be more mental work than I have had in a long time.
Probably since we had to make the decision not to have children and pass this
on to them. It is hard to explain what it is like mentally to be in this much
pain 24/7. On top of all that pain and fatigue and lack of sleep is that anger
of losing your identity of yourself. I am not the person that I am supposed to
be, I am not even a person that I like. I don’t want to be someone that just
survives, drifting through a fog, going through the motions and waits for the
other shoe to drop. I know that I will never get this pain under control, but
somehow as the pain got so much worse, I started letting the pain control me. I
no longer control it. I must take that back. Although I will never get better,
I will continue to decline as patients with severe AS do, I do not have to let
it take me down with it. Here is to a great 2018! With hopes that I find my
working biologic this year and start slowing the progression. And hopes that
the diet and exercise control the neck swelling enough to give me some feeling
back in my hands, as surgery is not an option. Thanks for joining me on my
journey, you are an important piece to my battle against this disease, as I
could not do it without the support of any of you!
Age 6 costochondritis (chest pain
that mimics the heavy chest pain of unstable heart attack) and pleurisy (pain
with deep breathing that occurs when the outer lining of the lung is inflamed),
Rib involvement only happens in about 20% of AS cases and is considered
rare.
Age 10 Headaches upon waking or
after periods of rest
Age 12 Insomnia
Age 17 Percocet daily for pain,
3x/week chiropractor visits
Age 22 SI Joint dislocation then
hypermobility, HLA-B27 positive antigen test, began Methotrexate
Age 25 Bowel Involvement, began
Humira when it came out
Age 30 C5-C6 disk replacement, no
more chiropractic care (too dangerous with AS)
Age 31 Humira quit working
Age 32 Ulnar Nerve Replacement Left
Arm, shoulders rounded forward (start of the hump back), made the decision not
to have children after meeting with Fetal Specialists
Age 33 Enthesitis (swelling of
where the ligament attaches to the bone), Jaw – only 10% of people are affected
by this, Slipped Disk L5, Slipped Disks C3-C4, C4-C5, and C6-C7
