Read In Your Native Language

Showing posts with label USA: Michigan. Show all posts
Showing posts with label USA: Michigan. Show all posts

Monday, June 6, 2022

A.S. Face 2225: Rebekah

 A.S. Face 2225: Rebekah




Hello my name is Rebekah and I have Ankylosing Spondylitis.

I rescue and rehabilitate birds so I’m including a picture of me and my latest flock!

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, July 4, 2019

A.S. Face 2203: Linda

A.S. Face 2203: Linda



My name is Linda and I am a face of Ankylosing Spondylitis. I am 72 years old, live in suburban Detroit, Michigan and am blessed with a son, grandchildren, and great grandchildren. I retired at age 67, after working 46 years. I didn’t really want to retire, but I no longer had the strength for the daily battles.
I have lived with the complexities of this disease all my life, along with several other conditions. From the time I was born I was unable to tolerate most foods. I eventually went on to live a fairly nor-mal life, albeit one with pain and discomfort. My father would rub my legs and back in order to ease the pain enough for me to fall asleep. I was never given any “passes” though. No one ever believed that I was really hurting. Thought I was just making it up. When I did go to the doctor, and they would ask what hurt, I wanted to say everything! Of course, I knew they wouldn’t believe me either, so I would say my hip, or my knee, or my foot, etc.
My serious pain and mysterious issues started in my 20’s. I was told more than once that I had Rheumatoid Arthritis or Lupus, even when the tests came back negative. They said I would not live more than five more years. Made me so angry that I didn’t see doctors except when I had to. I had a son to raise and had no intention of leaving this earth until that was done. I seemed to always have one infec-tion after another – kidney, respiratory, throat, ear, intestinal, female related, etc. Had a rare virus which resulted in hepatitis, meningitis, and encephalitis. Fatigue, low grade fever, joint and muscle pain were my constant companions. Following doctor’s advice, I was taking 13-15 aspirin a day, plus other self-help remedies, which only resulted in many, many ulcers and being medicated for that.
I discovered that I had Celiac Disease when I was 39, purely by accident. I was having problems with my neck and the doctor showed me my x-ray, saying I had premature osteoporosis. He said I was way too young and had no clue why I had it. He gave me a script for Motrin and sent me home. I start-ed researching premature osteoporosis, and found out that it was a precursor for Celiac disease. My mother had Celiac (also diagnosed late in life) but was soon also diagnosed with dementia, so I hadn’t even thought about the hereditary implications of Celiac. I was then tested for Celiac with positive re-sults. Went on a strict gluten-free diet and was much improved in that area.
I have had various medical issues over the years; some which I now realize are undoubtedly re-lated to my Spondylitis. Bone and muscle pain of course, unending fatigue, Reynaud’s syndrome, ten-donitis, bursitis, trigeminal neuralgia, vertigo, surgery for two kinds of cancer, cramping everywhere, many allergies and reactions, flu-like symptoms, vitamin deficiencies, psoriasis, bone loss, many bone spurs, torn ligaments and tendons, stomach and intestinal conditions, and aortic insufficiency, to name a few.
I was diagnosed with Spondylitis in 2011, when I was 64 years old. The Rheumatologist wanted to put me on Methotrexate or some other AS related medicine, but I felt that at my age, and in my condi-tion, the risks outweighed the benefits. With all my issues, she was cautious about treating me. She said “You scare me”. In addition to the aforementioned, I have developed type II diabetes, emphysema, iron deficiency anemia, high blood pressure, gastroparesis, diverticular disease, GERD, and hepatocellular disease. I treated myself fairly successfully for many years with ibuprofen, along with my special diet and stomach meds. The ibuprofen has however, taken a toll and I can no longer take it. I now get iron infusions when I need them, take pain meds only (Tylenol and Tramadol), omeprazole, Metformin, Lis-inopril, plus topical medications for my psoriasis. I am now on a walker, and my worst issues are my jaw, neck, hands, shoulders, ribs, back and hips.
Quite honestly, I am amazed that I am still here. I have lived my life with purpose and love, and I believe that has helped see me through the hard times. I pray that I have not passed on the inheritable tendency for this disease to my loved ones. Hopefully there will be new medical intervention for those that come after me. Now that I am older, and tend to look back now and then, it is the joy and love I remember – much more so than the trials and tribulations. Lately, it has meant so much to be able to read the stories of others similar to myself. I don’t feel as alone.

Michigan, United States of America

Wednesday, June 19, 2019

A.S. Face 2178: Melissa

A.S. Face 2178: Melissa

Face 2178

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 inwouldnt 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.

Tuesday, January 16, 2018

A.S. Face 1927: Sarah Sullivan

A.S. Face 1925: Ashley Marrison

A.S. Face 1925: Ashley Marrison

I spent most of my life wondering why I had such excruciating lower back pain. Family would always say ‘oh we all have back problems’, doctor’s would chalk it up to my menses. The pain started when I was around 13/14 years old, and it would visibly swell up, and then lock up. Dealt with it until I hit 28 years old(2017), and poof, my Rheumatologist tested me for HLA B27, I came back positive so she ordered x-rays. Low and behold, it showed damage indicative of Ankylosing Spondylitis. Finally, I had an answer to some of my problems.

Although – it isn’t an answer I wanted. Quite frankly, I was hoping it was normal and I’d get over it. Who knew I’d be fighting such a horrible disease…

A.S. Face 1921: Melissa

A.S. Face 1921: Melissa



I began to feel weird aches and pains in my late teens. My complaints were always brushed off as aches from weight, sleeping wrong , or “it happens”. After my first son was born at age 22, I had what I now know what a flare. I couldn’t walk for a week without help. I was told it was sciatic pain since my son was so big. It was normal. I had a flare in my neck for my next son. I woke up with severe pain and swelling for no reason about 6 weeks post delivery. That, was from me sleeping wrong they said. But it lasted 3 months ... And still bothers me today. My wrist would swell, my leg would swell, my foot would ache. My legs would feel so sore if I sat in a car ride , and I would avoid doing things like the zoo.. or family outdoor activities. It was too painful. My next child was born and I had a major flare in my center back. I couldn’t sit up without help. I would fall. It would completely give out. Not too long after she was born I was diagnosed with a pituitary brain tumor and had surgery. During my recovery from that.. I had a flare in my wrists. I couldn’t even hold a piece of paper. Then a couple weeks later .. it was my shoulder. My doctor finally stopped thinking I was crazy and had a hunch. She tested me for the HLA B27 gene. I was positive . That, with the MRI’s she ordered.. showed not only do I have AS.. I have it severely. I have calcification in my feet, and Achilles tendons. I have erosion and calcification in my knees, and I have fusion and erosion in several spots of my spine. Also, my left SI (joint) also has erosion and damage.
I was healthy for the most part. Just always stiff in the morning and sore all over if I was in the car or at a movie theatre . I would joke to my husband that “I feel like I am 100 years old” or “I feel like I’ve had the flu for a week”. My brain surgery turned my already bad AS, into a full on vicious attack. I can’t work anymore. I had to quit school with only 100 hours to go. I have a helper at my home a lot. I had $90,000 in medical bills from April-December of 2017. Having AS has taken my strength, my ability to care for myself all the time alone.. and my ability to do little things like shop or enjoy company. What AS won’t ever do however , is make me give up.. or make me take for granted the wonderful things I do have. This disease sucks . It’s nothing I even ever heard of before I was diagnosed . I am fortunate to have a tremendous support system ,. The worlds greatest and strongest husband .. and loving friends and family.. including 5 and one on the way beautiful children who love me even when I have to love them from my chair a lot. I’ll continue to share my story, so we can raise awareness and make some much needed advances in our treatment options! I am now 33 years old and was diagnosed at 32 years old.

A.S. Face 1908: Diannea Hutson

A.S. Face 1908: Diannea Hutson



My Name is Diannea Lynn Hutson and I am 48 years young and was diagnosed in my mid 30’s with AS but have shown the symptoms my whole life since I was a young child.

Tuesday, January 9, 2018

A.S. Face 1892: Gerri Loney

A.S. Face 1892: Gerri Loney

Face 1892

My name is Gerri Loney.  I was diagnosed with AS about 7 years ago but my Gastroenterologist suspected that I had it for years before that official diagnosis by a Rhuematologist.   I was diagnosed with Ulcerative Colitis over 34 years ago and have been told that AS frequently goes hand and hand with the UC.  I had J-pouch surgery five years ago where they completely removed the entire colon and used the small intestine to create an internal psuedo bowel to eliminate the need for waste collection outside of the body.  Since UC is an autoimmune disorder and there is no long a colon to manifest in, it has relocated to multiple other areas in my body.  Predominately in my back as the AS has intensified significantly since the surgery.  At 62,  I am still working full time at an office job and intend to continue working as long as I can.  Not sure what other info I need to share – I have been a single mom for over 33 years of a son and daughter, both children are happily married and I have three grandchildren – 7 year old boy, 2 year old girl and an 8 month old girl.  It is very hard on this grandma to not be able to be as physically active as I would like to be with my grandchildren.

Saturday, December 30, 2017

A.S. Face 1850: Bonnie Goupil

A.S. Face 1850: Bonnie Goupil
Face 1850


AS has been many things for me, but most of all, I think it has been validation. All of the pain and illness that others told me was in my head is real. I’m not crazy! And no one ever had the right to tell me that I wasn’t experiencing the pain I was, because “nobody” hurts everywhere like I did. Well, actually, I’ve met quite a few who also have this disease, and you know what? They’re not crazy either. And we are strong people who get through every day fighting a battle those others will never know. But we know. We’re warriors. We’re not crazy.

Bonnie Goupil
Elsie MI

Saturday, February 25, 2017

A.S. Face 1763: Mindy

A.S. Face 1763: Mindy

face-1763
I was diagnosed last year, at the age of 46. I have had back problems for half of my life. Two years ago I had to start sleeping in a recliner due to not tolerating sleeping flat anymore. Then a year ago my body started swelling. Began with my right 3rd finger, then right 2nd toe. I thought I had gout. Seemed I had all of the symptoms, until my entire right hand started to swell and the joints were extremely painful, both feet were swollen and I could barely tolerate walking from the chair to the bathroom, and the left hand started to swell. My family doctor did some blood work and I was ANA+. He referred me to a rheumatologist, which took a few months to get into. The rheumatologist performed 14 more blood tests. HLA B27+. I was placed on several medications as he tried to find what would work best for me. I am down to three medications now. Cymbalta, Celebrex and Enbrel. I have a lot more good days than bad now! I am so very thankful I didn’t just give up, like I truly felt like many times. This disease is definitely not for the faint of heart! I have found a lot of strength and support by talking with other AS “brothers and sisters”. So many wonderful ideas to try, which I did try several until I really found what worked best for me.
Michigan, United States of America

Saturday, September 24, 2016

A.S. Face 1695: Jennifer Dibble

A.S. Face 1695: Jennifer Dibble

face-1695
Hi, I am Jennifer Dibble from the Upper Peninsula of Michigan, USA.
I have had issues with my health starting in my late teens early 20’s. I was diagnosed with AS in the summer of 2012.  Before I was diagnosed it took me a few years to find out what I had. I have had many flare up of Iritis and each flare up damaged my vision. I had a flare up so bad that the doctors thought I may end up blind or even lose my eye all together. To get the right diagnosis I had to travel a few hundred miles. The doctor I saw was great he did so many test and we found that I have the HLA-b27 gene and that my inflammation makers were high and so on.  Through the test on x-rays the doctor was able to see that I have AS. Since then I have educated myself and try to educate others. I love the “well you don’t look sick” reaction. When I say love I mean I can’t stand. My family doesn’t understand it. I don’t understand it. Though I am on disability for other reasons I will not let my health dictate me or how I will live. I will learn new ways to live and keep going

Sunday, May 15, 2016

A.S. Face 1615: Beth Chipchase

A.S. Face 1615: Beth Chipchase

Face 1615
I was diagnosed with AS 4 years ago. I had never heard of this condition until my wonderful rheumatologist ran testing to address my many aches and pains including long-term eye pain. I also tested positive for the HLA-B27 antigen factor. Since then one sister has also been diagnosed, another is undergoing testing, and I discovered my cousin also has this condition.
Michigan, United States of America

A.S. Face 1609: J.

Saturday, May 14, 2016

A.S. Face 1606: Clayton

A.S. Face 1606: Clayton

Face 1606
I’m Clayton from Michigan. So I guess my story kind of begins like them all. I was 23 life was great I was in the middle of changing the direction of my career. I woke up one day feeling different. After seeing my GP a few times and him telling me I was fine I gave up looking for an answer. Fast forward a year and things were only getting worse. I wasn’t able to sleep because the pain was so bad and doing any kind of activity took a lot out of me. I found a new GP who was willing to listen to me. We spent the next few years going through trial and error to find something that would help me feel normal again. Unfortunately nothing seemed to help besides narcotics which I was against being on for a long period. My doctor suggested I start seeing a specialist. After my second visit with my rheumatologist I was officially diagnosed with AS, 4 years after my journey had started. It was quite a relief to know I wasn’t crazy but a whole new set of challenges are before me now. I started Humaira 2 months ago and I’m trying to stay positive that this could be the relief I’ve been praying about.
Michigan, United States of America

A.S. Face 1604: Sue Wallace

Wednesday, March 23, 2016

A.S. Face 1597: Abby G

A.S. Face 1597: Abby G

Face 1597
Abigail  was diagnosed with Ankylosing Spondylitis when she was 9 years old. She, and her twin sister. Emma, just turned 10 on Jan 12th. Abby is on Humira and Methotrexate along with a special diet and 8 other supplements.