Read In Your Native Language

Showing posts with label Will Never Be Forgotten. Show all posts
Showing posts with label Will Never Be Forgotten. Show all posts

Sunday, May 29, 2022

A.S. Face 2215: John Potter

 A.S. Face 2215: John Potter


November 30, 1949 - February 8, 2014

This is my father, John Potter. He passed away in 2014 from complications from his medications at the age of 64.

He had suffered from back pain for years, before getting the diagnosis of AS in his 30s. By then, he was almost completely fused. He still managed to work as an electrical engineer and field service rep up until he broke his back at work. He had surgery, and managed to recover enough to walk. A few years later, he broke his neck in a freak accident. Once again, he recovered enough to walk with his walker.

He loved my mother very much. They were married 42 years. He was supportive of my brothers and I. I am the only one who developed AS, and he helped support me in the initial years after my diagnosis. He also loved his grandsons. Both of my boys were premature, and he would babysit them with my mom when they were babies, and I had to go back to work.

Despite all of his pain and struggles, he was the ROCK of our family, and is missed.

This photo is from a trip to Niagara Falls. It was a trip he had always wanted to go on, and we did it.

Robin Peterson

Michigan, United States of America

Thursday, June 27, 2019

A.S. Face 2197: Johnny

A.S. Face 2197: Johnny



My name is Brandi, and I wanted to share my father’s story.

This is my dad, Johnny. His symptoms came on suddenly when he was 17 years old. He was already a husband and father by that time (crazy, but true). It would be more than 10 years and countless doctors before he was diagnosed at 28. He worked construction and there were many injuries along the way. Injuries worsened by the AS. He had his first joint replacement before his 40th birthday. Many more followed. He struggled with the pain and the need to provide for his family. He turned to illegal drugs that allowed him to do that. He eventually got clean and he lived with the daily, constant pain. As if that wasn’t enough, he carried guilt after my own diagnosis when I was 16.

He passed suddenly in January 2016 at 48 years old. He was a husband of 32 years, a father of 2, and grandfather of 6 (his pride and joy, by the way). He had accepted Jesus as his Savior years earlier so I KNOW that today he’s free from that bondage of pain.

Mississippi, United States of America

September 2, 1967 - January 7, 2016

Wednesday, June 19, 2019

A.S. Face 2179: Fred

A.S. Face 2179: Fred

Face 2179

My name is Melissa and this is my Grandpa Fred.  This picture was taken on his last Father’s Day here on earth.  In this picture he had zero quality of life left.  You see, since he was in high school his right hip had been fused, this was before AS was even a thing yet.  More and more fusion occurred over the years from his neck to his spine and his ribs.  On December 8, 2016 he fell in his home causing him to land flat on his back.  The doctors said that his fusions in his spine basically shattered and were like shrapnel shot into his organs.  The doctors were able to save his life, however, they had to put a rod all the way from his neck through his entire spine.  This caused him to literally be fused from the top of his head to his right knee.  No more turning his head, no more looking up at the sky, no more searching for the remote, what little quality of life he had was gone.  During this entire struggle with my grandpa, what my family did not know was that I had developed Uveitis one day while driving home from work.  That led to many specialist appointments, a new rheumatologist, MRI’s, a gastroenterologist, a colonoscopy, etc.  I was diagnosed with Spondyloarthritis, Psoriatic Arthritis, Ankylosing Spondylitis, Crohn’s Disease and Fibromyalgia all within a couple months time.  I promised myself that my grandpa would never know that I was diagnosed with AS, it would have broken his heart to know that I was living with his monster.  He would have blamed himself and i wouldn’t do that to him.  I kept all of this a secret from that entire side of my family until after my grandpa passed away less than a year after his fall.  I was raised by my grandparents, talking about their deaths is so hard for me.  But when I decided to share “My Face of AS,” I decided I could share two and tell two stories instead of one.

Monday, April 15, 2019

A.S. Face 2100: Tisa Elaine Dixon

A.S. Face 2100: Tisa Elaine Dixon

Face 2100Tisa Dixon_The Walking SpondiesTisa Dixon_1Tisa

JANUARY 10, 1974 ~ OCTOBER 23, 2018 (AGE 44)

This page has been submitted to Faces of AS in support and remembrance of a wonderful friend and a loving woman, Ms. Tisa Elaine Dixon. Tisa’s support group, Fibromyalgia and Ankylosing Spondylitis in Women, wanted Tisa to have her place on Ms. Cookie website, to be remembered for her hard work, friendship, and dedication to 2,000+ women that she interacted with as a page admin on a day to day basis.

Tisa was friendly, beautiful, loving, and truly God’s girl. She had a kind word for everyone and was diligent about checking in with her friends each day. She was an active member of our group and often led discussions on coping and getting through hard days.

Tisa was also an active and supportive member of The Walking Spondies, a team of walkers that walk each April and May to raise awareness and support for Ankylosing Spondylitis. She was a terrific team cheerleader and always encouraged everyone on the team to keep putting one foot in front of the other.

Our group is still mourning your loss and we are sending all our love to you. We were devastated to learn of your passing. You touched many many lives and we all benefited from your never-ending kindness and sweet nature. Tisa, you will be truly missed.

North Carolina, United States of America

Thursday, March 29, 2018

A.S. Face 2074: Sherry Webb Nicosia

A.S. Face 2074: Sherry Webb Nicosia

Face 2074

Sherry Webb Nicosia from Pride Louisiana

She had Ankylosing Spondylitis and died at the age of 45 years old in 2005, the cause of death was an aortic rupture due to inflammation.

Louisiana, United States of America

A.S. Face 2073: Charles Webb

A.S. Face 2073: Charles Webb

Face 2073

Charles Webb from Clinton Louisiana

He had Ankylosing Spondylitis and died at the age of 61 years old in 2001, the cause of death was an aortic rupture due to inflammation.

Louisiana, United States of America

Monday, January 1, 2018

A.S. Face 1858: Leonard Trask

A.S. Face 1858: Leonard Trask

June 30, 1805 – April 13, 1861


Leonard Trask: The Wonderful Invalid
The First American Description of Ankylosing Spondylitis





I have waited a long time to add this Face to the website, 6 years, 2 months and 24 days to be exact.

The reason I chose this number to honor him is because in 1858 a book titled A Brief Historical Sketch of the Life and Sufferings of Leonard Trask The Wonderful Invalid was printed and published by David Tucker. It eventually became the official first written documented case of Ankylosing Spondylitis in the United States of America.
In my research about Ankylosing Spondylitis many years ago I came across the information about Mr. Trask who was called the Wonderful Invalid.

I ordered his book and read it within an hour, a lifetime of suffering and devastation documented in 48 pages, it was both inspiring and heartbreaking to me.

This is a small part taken from the original book:

In 1858, David Tucker published a small booklet which clearly described a patient by the name of Leonard Trask who suffered from severe spinal deformity subsequent to AS.$[10]$ In 1833 Trask fell from horse exacerbating the condition and resulting in severe deformity. Tucker reported that “it was not until he [Trask] had exercised for some time that he could perform any labor” and that “his neck and back have continued to curve drawing his head downward on his breast”, evidence of inflammatory disease characteristics of AS, and the hallmark of deforming injury in AS. This account became the first documented case of AS in the United States.

I want to share a poem that Mr. Leonard wrote that was included in the book.


To My Patrons

Ye favored thousands of our happy land,
Who, blest with health with peace and competence,
Before your fellows hale, erect can stand,
Enjoying all the sweets of ever sense.

While your fair brows, you heavenward raise with ease,
Beholding all the bustling scenes around,
And me, unshapely, bow’d with dire disease,
My vision stinted, all my frame unsound.

With thankfulness, with gratitude and praise
To Him, whose watchful eye is over all,
Your hearts, your mind, your voice to Heaven raise,
That my misfortune did you not befall.

And while your limbs are hale and fee from pain,
Health blooming, your companion, night and day,
At poverty repine not, nor complain,
Though gold and riches lie not in your way.

Would you, who thirst for wealth or power desire,
When you my uncouth form and sufferings see,
Your longing to gratify, retire
From the hale circle, and exchange with me?

Would all the gold, which California yields,
Tempt you to take my form, and aching head?
Or all the wealth that reaped on India’s field?
If not, reflect, how poor I am, indeed!

Would you, whose coffers gold and silver fill,
Whose income yearly, hundred thousand tell,
Choose rather, if the choice were at your will,
Become like me, or all your wealth expel?

If you all wealth would banish from your sight…
Would health and form preserve, what e’er they cost;
By this crierian, exercised aright,
You may appreciate what I have lost.

I would not, friends, excite your mirth or glee,
Nor down your cheeks induce the tears to roll,
Unless those tears again could gathered be,
To the calm fountain of the tranquil soul;

And there excite the peaceful, quiet mind
To resignation, placid, sweet content,
And gratitude to heaven, good and kind,
Who, to your lot, has better fortune sent.

Yet, think not, while affliction’s cruel hand
Presses me down, and holds unyielding sway,
That I, a human, living wonder stand,
Stoic in soul, with heart as cold as clay:

With joy, I often look to the heaven above,
Thank God for mercies and benignant care,
Rejoice, that through his kind and tender love,
I, still so many earthly blessings share.

I thank Him that the hearts of men are kind,
That while I live and wander here below,
So many sympathizing friends I find,
Such friendly treatment, too, where’er I go.

I’m thankful, too, that woman’s angel heart,
The same in every clime, in every land,
In sorrow’s vestry, always acts its part,
To raise the object with a tender hand.

Though gay and sportive, as a fairy queen,
How soon she melts at the scenes of bitter woe!
Down her fair cheeks, my eyes have often seen,
The crystal fountain of hear heart, so flow.

I’ve seen her in the village—in the town,
In crowded streets, and marked the silent tear.
I’ve met her sigh, but ne’er her haughty frown,
Her words unpleasant, never greet my ear.

In towns or cities, little children kind,
Treat not the cripple scornfully nor rude;
Among them, many precious friends I find,
With minds and hearts, like little angels good.

They look with wonder, pity and surprise,
Nor insult, to my sorrows, ever add;
From them, no shouts of ridicule arise;
Their kindness, too, has oft my heart made glad.

Through many a seeming long, and tedious year,
Such torture racked my mortal, shattered frame.
That grateful, thankful—even joy sincere
I feel, at relaxation of my pain.

In resignation there is joy and peace,
Whate’er my lot, whata’er my form may be;
Faith, Hope, and Charity those joys increase,
And soothe my mind in dark adversity.

In that celestial bright and happy land,
Beyond the vale of sorrow, pain and tears,
Where I, erect in glory, hope to stand,
In faith and hope, the future bright appears.

I thank you kindly, sympathizing friends—
Your favors, your kind patronage implore;
On these alone, my earthly weal depends—
Farewell: — and peace be with you evermore.

Leonard Trask

Sunday, October 9, 2016

A.S. Face 1707: John Allan Hill

A.S. Face 1707: John Allan Hill


face-1707face-1707-a
John Allan Hill died on the night of Sunday, September 4th, 2016 at New Hanover Regional Medical Center near his hometown of Carolina Beach, NC.
Allan worked as a lifeguard prior to attending NC State University, where he received a Bachelor of Science degree in Engineering Operations in 1976. He later worked in IT/Programming.
He had AS since the age of a young teenager and died after a couple surgeries that were meant to help straighten his spine. His daughter, Charis, is face #914.
Allan was 68 years old.

Saturday, May 28, 2016

A.S. Face 1620: Karlie Edwards

A.S. Face 1620: Karlie Edwards

Face 1620

Passed away May 6, 2018
I am 33 years old
Been suffering with AS  since 17 years old if not earlier
I’ve been diagnosed for just over 5 years
I have a wonderful, loving husband and a mischievous four year old who I love more than anything
I just wanna say having AS and being a mum is one of the hardest jobs I’ve ever done X
I had to give up my profession as a chef it was causing too much pain…  I miss it so much

Sunday, June 7, 2015

A.S. Face 1542: Darren McPhee

A.S. Face 1542: Darren McPhee

Face 1542

November 6, 1984 - May 21, 2018

I don’t have much of a story.  To be honest, I only found this site because I am not in a great psychological state.  Thankfully the site has shown I’m not alone.
I’ve been told I have a bad back for years.  They only found the AS two years ago because they were scanning for cancer (which is a whole different story).   So far I’ve been very disappointed in my medical care and hopefully I can give them a shove based on the knowledge I have gained from other people’s stories.
The above picture was taken this time last year.  I could stand, walk, etc.  Now, I can’t stand without two canes and extreme pain.  I have a wheelchair and can’t sit in it for long again due to pain.
I don’t see much light at the end of the tunnel at the moment.  This won’t inspire anyone, it just felt good to get it out.  And thank you to the others who have posted on here.
Darren McPhee, from Glasgow, Scotland, United Kingdom

Thursday, April 30, 2015

A.S. Face 1515: Shawna Underwood

A.S. Face 1515: Shawna Underwood

Face 1515
U.S.O. Event
Face 1515a
The injury that started it all.
Face 1515b
Fighting for relief!
Hello, My name is Shawna Underwood. I have spent my entire life working as a humanitarian and medical worker. I also lend my time as a USO girl. I have only been fighting A.S. for a year now. It took 7 months to find out what was causing so many problems. I found out I had A.S. after an injury in the field caused my faulty gene to switch on and bring on the excessive and uncontrollable inflammation. It took three surgeries, the loss of two organs and half my stomach, the wasted 2 months of psychotherapy (cause I was told I wasn’t really in pain; my PTSD was causing pseudo pain) before I found myself crying from relief in a rheumatologists office with an official diagnosis. I wasn’t happy to know I had such a harsh disease but to know I wasn’t losing my mind. I have just started biologic treatments and am excited to see if they help, as nothing has to this point. I’m glad to find all this support for those of us fighting A.S.
Texas, United States of America
August 30, 1985 - February 20,2023

Wednesday, April 8, 2015

A.S. Face 1493: Mitzi Pate

A.S. Face 1493: Mitzi Pate

Face 1493

April 22, 1960 - March 4, 2020

I am Mitzi Pate in League City, Texas. I have AS and two other autoimmune disorders. I have fibromyalgia. I have two types of cancer in my history. That’s most of my big medical difficulties. It is amazing how complex our bodies are and what can go wrong even when we try to take good care of ourselves.  I eat healthy.  I do not smoke or drink alcohol. I am active. I believe we must use our limited energy in the most positive ways we can. I believe we have to bloom where we are planted. I believe that I am more  compassionate for others because I have had my own difficulties, and I realize everyone has some sort of hurdle to clear in life. I hope to stay focused on what I can do rather than what I can not.  I believe God puts people in our path for a reason, and I have so much gratitude for the people who have crossed my path. I believe we are stronger than we realize. My prayer for each of you is to find your strengths and enjoy life. Have courage and be kind.
Texas, United States of America

Thursday, April 2, 2015

A.S. Face 1487: Bradley “Jay” Ford

A.S. Face 1487: Bradley “Jay” Ford

Face 1487

Hello:  My mom is sending this entry in for me posthumously.   My name is Bradley Ford, but my friends and family called me Jay.  I started suffering from A.S. when I was 18 years old.  I had Leukemia for the first time at age 7.  After an almost 8-year remission, Leukemia struck me again when I was almost 18, in 2009.  My mom has A.S., and she and I both had the same symptoms of the lower back and hip pain.  Going through A.S. and Leukemia together was pretty rough, especially since I had so many complications and had to stay in bed for long periods of time during cancer treatment.  I made it through my second bout of Leukemia when I was 20 years old, but then the Leukemia returned with a vengeance in 2013, along with my A.S. symptoms.  I was given three months to live because a bone marrow transplant was out of the question since chemotherapy stopped working.  All through these difficult times, I stayed as positive as I could, despite the pain from A.S. and Leukemia.  I passed away on July 13, 2013,at the age of 21.

Wednesday, October 15, 2014

A.S. Face 1368: Tanya Amstutz

A.S. Face 1368: Tanya Amstutz

Face 1368

Passed away May, 17, 2016

My name is Tanya Amstutz, I’m 34 and I was just recently diagnosed after struggling for 2 years.
My story begins with the conception of me and my husbands first child.
2 months into my pregnancy, I woke up with excoriating pain in my left butt cheek. I couldn’t bend my leg or weight bear. I was so scared because the pain literally came out of no where, I had no prior problem and no accident had occurred. My husband took me to the emergency room and of course since I was pregnant, no one could do anything and the recommended seeing a neurologist and to contact my OBGYN.
While I waited for my neurologist appt, I saw my OBGYN who assured me that this was all pregnancy related. Too much relaxin being produced was causing my SI joint to spread and that it would go away after delivery.
I saw the neurologist who told me the same thing. She thought it was the baby pushing on my sciatic nerve which I thought was insane because at that point, he was no bigger than a walnut. She recommended PT until I delivered and then told me if 3 months after I had my son I was still in pain to come back.
2nd trimester rolled around and I was in so much pain I couldn’t walk or drive, I couldn’t sit for very long and had to quite my job. I went to PT every week. Tried dry needling and stretches but nothing worked and I just got worse. Besides the pain in my butt cheek, the pregnancy was great and I gave birth to a beautiful little red headed son in 2013. Unfortunately, I had back labor and due to all my pain and SI joint issues they gave me an epidural higher up and it still worked, thank goodness.
After I had my son, I continued with PT, got acupuncture, massage therapy and nothing was working. In fact it was getting worse.
I went to the neurologist again and had a MRI which showed a massive amount of inflammation in my left SI joint. She said, oh well, you have arthritis and there is nothing we can do but send you to pain management. I kept saying, how could I have arthritis at 32 with no prior issues. This just came out of no where.
So, I went to pain management while still doing PT…we are now over a year of weekly PT. We tried steroid injections and got me on meds. I had tried a bunch of anti inflammatories that didn’t work and just made me sick. Now, at this point, my pain spread from the left SI joint to my right SI joint and up my lower back. So, nerve blocks here we come and after that a full RF bilaterally L5-S1.
I was still in terrible pain. I got a second MRI that showed the inflammation had spread into the right SI joint up into the facet joints of L5-S1.
I saw a spine specialist and they found nothing wrong. My GP ordered blood work, no inflammatory markers or indicators of lupus. At this point I am so frustrated. I can’t walk, play with my son, drive…it was horrible.
So I finally saw a rheumatologist. She drew blood and I came back positive for HLA-B27 and she said she thought I had AS and wanted to start me on biologics right away. She was very unfriendly and rude so I decided to get a second opinion.
I met with a rheumatologist who specializes in auto immune disorders, specifically AS. After reviewing all the notes from every doctor and all my MRIs and X-rays, he officially diagnosed me with AS and I’m due to start humeria this Friday.
To say the least, this freaked me out because I actually knew what this was. I studied forensic anthropology focusing on paleopathology and one of my skeletons had AS. I knew the potential damage of having this disease.
While I was waiting for my second opinion, I joined your support group and another so I could ask questions and vent to people who understand and it has helped me a lot…just knowing I’m not alone.
I’m terrified of what my future may hold especially since my pain and swelling as spread to my knees, thumbs and wrists but I’m trying to stay positive for my husband and son.
I just wanted to share my story and get an official Faces number and a bracelet so I can help spread awareness and show my support.
Colorado, United States of America

Monday, October 13, 2014

A.S. Face 1366: Thad

A.S. Face 1366: Thad

Face 1366

May 30, 1967 - February 24, 2019

Hello AS community! My name is Thad and I am in Atlanta, GA.

I had started a really detailed analysis and description of my struggle with AS. I had been reading “Faces” for awhile now thanks to my wife finding it. I have recently had two events compel me to scrap that idea and just speak from the heart.

I am a big West Virginia  University fan both football and basketball. I belong to a WVU sports forum…I jokingly posted a thread asking what local good eats could be smuggled into the Med Center there as I am having my first back surgery at the WVU Spine Center soon. I got an odd private message from a guy named Mike. He had never posted on that board and felt “compelled” to reach out to me(so I guess I am “paying it forward”). Mike’s brother, Chris, had AS. Chris had hip replacement surgery and fought the good fight against this insidious disease and yet sadly, Chris ended his fight. I know his brother Mike plans to post his story here on “Faces”.  I know he will do a much better job than I can. Suffice it to say, I have now been adopted by a new brother who shares a disdain for AS and a love of The Mountaineers.

The second event that compelled me to post here on “Faces” was Cookie’s recent post sharing milestones and unfortunately our losses. Any loss to AS is one too many…I now know of 5.

I have now had AS for 30 years…I have lost 7″ in height as bone fusion has taken over. It took 20 of those years to even diagnose me. I will not bore you with all the details of meds and such I have been through. I am now, because of ” quality of life” issues, electing to have a “wedge” of my upper lumbar spine removed in December. It will apparently gain me 2-3″ of height back, take some pressure off of my lungs and give me some pain relief. Am I scared? You bet! I have quite a few secret weapons though! My wife and father are my immediate support (and cheerleaders), my Aunts and Uncles, a multitude of friends, my Aquatic Therapists Angel and “Sam” who have been working my rear off preparing me for surgery, and my “brother” Mike along with my new friends here at “Faces”.
Maybe I am too stubborn, mean and ornery to let AS beat me. I don’t know. I DO know when I am having bad days…I rely on my army of secret weapons, gut it out, place a smirk on my face (a smile is hard sometimes) and cheer on my Mountaineers!
I will now add my “Faces of AS” family as a team to root for!
Thanks for reading,
Thad
Georgia, United States of America