#life with spondyloarthrosis

“BLEED” DESCRIBES PERFECTLY WHAT MANY OF US SPONDIES GO THROUGH ON A NORMAL DAY – LIFE WITH ANKYLOSING SPONDYLITIS

I am speaking for, at least a few of us, my brothers and sisters, my fellow Spondies, who live with, and suffer from, some of the most agonizing types of pain one can endure, honestly, sometimes feeling like we are at death’s door, facing the reaper him or herself—torturing us without reason.



FOR THOSE OF YOU WHO DO NOT SPEAK EXTREME EXPERIMENTAL TECHNICAL DEATH METAL, HERE ARE THE BLEED LYRICS: BY MESHUGGAH

“Bleed”

Beams of fire sweep through my head
Thrusts of pain increasingly engaged
Sensory receptors succumb
I am no one now only agony

My crimson liquid so frantically spilled
the ruby fluid of life unleashed

Ripples ascend to the surface of my eyes
Their red pens drawing at random, at will
A myriad pains begotten in their wake
the bastard spawn of a mutinous self

The regurgitation of my micro nemesis
salivating red at the prospect of my ruin, my doom

Malfunction the means for its ascent
Bloodletting the stringent voice to beckon my soul
So futile any resisting tension
As death-induced mechanics propel its growth

The implement, the device of my extinction
the terminating clockwork of my gleeful bane
The definitive scourge of its mockery
the end-art instruments lethality attained

Heed – it commands, heed my will
Bleed – it says, bleed you will

Falling into the clarity of undoing
Scornful gods haggle for my soul
Minds eye flickers and vellicates as I let go
Taunting whispers accompany my deletion

A sneering grin, the voice of my reaper
chanting softly the song of depletion.

Beams of fire sweep through my head
Thrusts of pain increasingly engaged
Sensory receptors succumb
I am no one now only agony

My crimson liquid so frantically spilled
the ruby fluid of life unleashed

Ripples ascend to the surface of my eyes
Their red pens drawing at random, at will
A myriad pains begotten in their wake
the bastard spawn of a mutinous self

The regurgitation of my micro nemesis
salivating red at the prospect of my ruin, my doom

Malfunction the means for its ascent
Bloodletting the stringent voice to beckon my soul
So futile any resisting tension
As death-induced mechanics propel its growth

The implement, the device of my extinction
the terminating clockwork of my gleeful bane
The definitive scourge of its mockery
the end-art instruments lethality attained

Heed – it commands, heed my will
Bleed – it says, bleed you will

Falling into the clarity of undoing
Scornful gods haggle for my soul
Minds eye flickers and vellicates as I let go
Taunting whispers accompany my deletion

A sneering grin, the voice of my reaper
chanting softly the song of depletion.

Doctors and A.S.

Doctors, at least some of them, have no clue the levels of pain endurance us Spondies have to suffer thru: the insufferable waiting we have to do at hospitals, watching the patients’ numbers slowly, and more slowly, tick away, until it is our turn, to go in and see the doctor. We wait because hopefully, we want to grab onto some HOPE from the doctors we see, who are there to get us thru our pain, or, relieve our suffering, at least, a little bit.

THEY HAVE NO CLUE

What doctors and hospital staff do not realize is that us Spondies feel like our bones are being bent in all the wrong directions when we have to sit for hours in very uncomfortable chairs while simply waiting for our doctor’s visit!

ANKYLOSING SPONDYLITIS is a Horrible Arthritic Disease!

My fellow Spondies, if you are following this post, how do your feel during and after, your doctor’s office episodes?

☆ I’ll tell you how I feel, and yesterday’s HOSPITAL DOCTORS OFFICE APPOINTMENTS MARATHON was horrific, but it is a good example of my personal experience.

I don’t sleep well at night.

I get maybe 3 or 4 hours of decent sleep, at most, each night. And that being the case, I always wake up in pain: Usually, my knees have locked up during my sleep, so my knees are screaming in agony and they won’t move, and the same goes for my fingers—they are also locked and take time to get moving.

If I have morning doctor’s appointments, I have to get up by 5:30am or 6am, at the latest. Because of the huge lines of patients at the clinics, and because it is on a first come first serve basis, it is best to get to the hospital by 7:30am to put your appointment card into the box, even though most clinics don’t start seeing patients until 9am.

Unfortunately, it takes time for me to loosen up a little, enough to get ready and out the door.

And, unfortunately, ever since I was diagnosed with Ménière’s disease, which is an inner ear disease that causes dizziness, deafness, and vertigo, I stopped driving. I felt it would be very unsafe to drive while possibly feeling very dizzy. Therefore, I usually take the bus and I have to walk a lot to get to the hospital, and the walking really sucks because it causes me a lot of pain because of my A.S., and my Osteoporosis.

☆ Therefore, do you see! I am already in SERIOUS PAIN before I even arrive at the fracking hospital!

Yesterday, was no exception. After the 2 kilometer walk from the bus stop to the hospital, I was already cursing the Universe for inventing Ankylosing Spondylitis.

My heart sank when I finally was able to see the ENT Clinic door, and I noticed the throngs of eager patients scurrying and milling about and around the clinic entrance. I went in the clinic door and put my apppointment card into the little box, and noticed it was only 8am. I found one of the few seats available inside, and waited patiently for my name to be called to go in for my hearing test.

The plastic seats in the waiting area are what many Spondies would classify as TORTURE DEVICES. They are NOT ergonomically designed in any way, they are very hard, and the chair backs curve in all the worst angles for someone with lumbar spine disease, like us with A.S..

SITTING, STANDING, LYING DOWN, ARE ALL TORTURE FOR A.S. OWNERS!

Depending on how much time you are forced to be in any one position, sitting, standing, and lying down can all feel like torture to anyone with A.S..

I timed how long it was until my name was called to go in to the doctors’ area, to have my hearing test: It was 10:20am. I was sitting uncomfortably in that torture chair for over 2 hours! Sure, I could have stood instead of sittting–that was my choice. Certainly, I, with my dizziness and Osteoporosis, could have stood…standing for over 2 hours! Yeah, that would have been a GREAT FRACKING alternative option!

By the time my name was called, my knees had already locked up on me…have you ever had to move quickly only to painfully realize that your knees won’t move?!? It’s not fun, it is agonizing in fact.

“Yeah, I’ll be there with you in one FRACKING moment…don’t give my place to anyone else!”

I’ve already been waiting over 2 hours–AND, I’m ALREADY LATE for my NEXT doctor’s appointment, which was scheduled for 10am, at the Dermatology Clinic.

I go into the sound-proof booth and listen to the beeps through the headphones. Of course, I can’t hear any of the low frequency sounds, as I am already deaf in my left ear to all low and mid-low frequencies, but I also notice that I could not hear some of the high frequency beeps.

I wait some more, and finally see the doctor, who casually tells me that you know that you are already deaf in the lower range, but NOW, you are also a bit deaf in the high range too.

I think: “FRACKING GREAT! I’m going more deaf—JOY! Just what I wanted to hear—no pun intended. If I wasn’t already feeling down in the dirt, I was at that point.

SO…

THREE HOURS LATER! (As the SpongeBob Narrator would say)

I finally extricate myself from ENT at 11am, and I am now already 1 hour late for my Dermatology appointment. I won’t say what I go to the Dermatologist for, because I feel like Dermatology problems are very private types of medical issues.

Leave it to say, I had to sit one more hour in the torture chair before I saw the doctor.

I had one more doctor’s appointment.

Yes, 3 appointments on the same day. The third appointment was actually scheduled at the same time as my ENT appointment. I had no choice. We recently had 3 unexpected public holiday days where 2 of my appointments got moved to the 14th. So, that being the case, I had to choose which appointments got priority.

No need to mention what the thrid appointment was, but the main thing was that I was over 4 hours late, and the nurse wasn’t happy about it. But I did get to see the doctor.

CHAOS IN THE PHARMACY!

For some reason, the pharmacy at the hospital is FRACKED UP BEYOND ALL RECOGNITION (FUBAR)!

Their computerized numbering and computer voice systems are FUBAR. They were not working. Therefore, instead of waiting to see your number come up on the big computer monitors, and then going up to the counter to get your medication, the Pharmacists were yelling out names that corressponded to prescriptions.

☆ Can you imagine what it was like for me, someone with a hearing impairment, attempting to hear my name in a room of over 150 people, making noise, and pharmacists competing to yell loud enough over the crowd so names could be heard? It was horrendously difficult. I really had to focus my full attention on the pharmacist at counter 5, where my medication prescriptions were being processed.

Again, I had to sit in the torture chair. It was past 1pm already, my spine was SCREAMING in pain. My head was dizzy. The agony was so much, I thought I was going to be physically ill! I’m not sure how other Spondies get when they are in too much pain, but for me, I feel like I will be phycially ill, in other words, and I hate this word, “vomit“. But, truthfully, that is how I feel, and that is how I felt after my Hospital Marathon. Put yourself in my shoes and imagine what I was going thru.

BUT WAIT, THE FUN WASN’T OVER YET!

By 1:45pm, my name was finally called by the pharmacist, and I was lucky she could SCREAM!

I got my meds, and started my 1 kilometer walk in the tropical heat, to another bus stop. I got to the bus stop at a little after 2pm.

There are only two buses that go near my house—by near, I mean, half a kilometer.

My buses don’t come very often, so I wait, painfully some more, trading off between standing and sitting on even more uncomfortable torture-seating-devices at the bus stop.

So, I waited, and waited, the heat and humidity causing my A.S., to feel even worse.

By 2:30pm, a bus came, and I was finally on my way back home.

By 3:15 or thereabouts, I made it home, feeling like about 15 kilometers of really bad road (that is a saying we have in Nebraska, where I’m from, but the original is something like “Feeling like about 5 miles of really bad county road,” because county roads in Nebraska are prettty bumpy, not well taken care of, and in miserable condition for the most part — falling into ruin.)

EVER THINK THAT A DAY OF BEING AT THE HOSPITAL WOULD FEEL LIKE GOING 15 ROUNDS IN THE BOXING RING!

Yeah, honestly, that is how a day of activity, like I had, can feel excruciating painful, like being beaten to death in the boxing arena!

Do you realize, maybe most of you don’t, that a day of activity is not a glorious experience for many Spondies. It can be an adventure of agony. People of normal health may just feel annoyed being at the hospital all day. For a Spondy, being at the hospital all day, sitting in torture-furniture, or having to stand for long periods, it is what I classify as THIRD-DEGREE-MISERY!

MANY doctors don’t consider how the clinic environment affects different types of patients—decor is a one size fits all mentality. Nevertheless, people with spondyloarthrosis diseases, like A.S., can just suffer waiting like everyone else—is that the general idea? I guess so—seems fair.

The thing is, WE DO NOT SUFFER LIKE EVERYONE ELSE! WE SUFFER LIKE WE HAVE BEEN TO HELL AND HAVE VISITED WITH LUCIFER HIMSELF, IN HIS TORTURE CHAMBER!

AM I RIGHT, SPONDIES!?! Am I the only one who feels this way?

AND THE AFTER EFFECT—THE ONE OR TWO DAYS AFTER A HOSPITAL MARATHON, OR ANY MAJOR OUTING!

The after-effects of an exertion like the one I just experienced, will have shockwaves for 1 or 2 days afterwards. I, for one, feel an overpowering fatigue that will haunt me for a couple of days after some physical adventure. I will have extra pain, and extra fatigue—more than my usual fatigue.

You see, it is not all fun and games for a Spondy.

We experience life differently than people with normal health.

Yeah, I know, boo-hoo, this is the smallest violin playing the saddest song for you and all your A.S., and other health problems.

Yeah, I know life isn’t going to be easy for a Spondy, you are fracking right!

Yeah, I know, get the the FRACK OVER IT! LIFE CAN REALLY SUCK!

CONCLUSION AND FINAL THOUGHTS:

I should know very well that A.S., sucks BIG TIME!

I’ve owned this fracking disease for 38 years! It doesn’t seem to get any easier either. For those of you who are able to take the newer biological medications–that’s good–I hope it helps. For us “old-timer-A.S.’ers”, well, we have to deal with A.S., differently. We just have to find ways to manage the pain and fatigue, if possible. I’m not going to tell you how to do that, you have your own way already. I just hope it works for you.

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