Minnesota, United States of America
Showing posts with label United States of America. Show all posts
Showing posts with label United States of America. Show all posts
Monday, November 6, 2023
Tuesday, October 24, 2023
A.S. Face 2248: Val Ruiz
I was diagnosed with AS in 1984, when I was 24.
Minnesota, United States of America
A.S. Face 2247: Lori Erickson
My name Lori Erickson and I have had AS symptoms since 2008. I am from Pennsylvania but spent 21 years in the Air Force and retired in 2019. Somehow I managed to pass all the physical requirements the military has in order to have a successful career. My last run was when my labrum tore in my hip and it’s when I finally listened to my body. After a knee and hip surgery recovery I decided to kiss AS in the ass and I got my first yoga instructor certification. I volunteer now days and I am always working on my goals of keeping flexible and staying strong. Love the AS community and how much positivity their is for those of us that have struggled throughout the years.
“The strongest actions for a woman is to love herself, be herself and shine amongst those who never believed she could.” — Unknown
Pennsylvania, United States of America
Saturday, October 21, 2023
A.S. Face 2246: Sharon Rackley
My name is Susan Rackley and I have axial spondyloarthritis. I was diagnosed with this in 2020 right as COVID hit. I have been suffering with this disease since my 20's and I am now 44. I saw a rheumatologist back then who said I had spondyloarthritis and had very little information to give me and the internet didn't exist so I ignored it for 20+ years and went on about my business until I hit 40 and my flares and inflammatory issues were wrecking my body and I needed to figure out how to get things under control. I decided to go back to the rheumatologist and figure out. I was immediately put on biologics (Cosentyx) which was working well but only lasted for two weeks and I was prescribed once a month. The doctor tried to get my insurance to approve me to have it twice a month but it was denied. She has switched me to Taltz and I am on month three and I see no change and I am in horrible pain. Hopefully it decides to work or we switch again.
Besides AS, I am currently dealing with NASH, stage 4 cirrhosis and I found out I have a rare genotype (IZ) and am Alpha-1 Antitrypsin deficient. So these are both contributing to my liver failure.
Charlotte, North Carolina, United States of America
Tuesday, February 7, 2023
Wednesday, June 15, 2022
A.S. Face 2241: Shawna
Hello my name is Shawna M. Ashley 🌺
Diagnosed with Ankylosing Spondylitis, Arthritis, Osteoarthritis for 35 years now… keeping my chin up with my treatments and taking my best care each and every day 🙏🏼♥️ and beyond grateful, thankful and blessed for each day forward.
Thank you for having me!! 🥰
Friday, June 10, 2022
A.S. Face 2230: Angela
This is my mother and I we both have AS hers is completely different than mine. We both tested positive for the gene.
A.S. Face 2229: Nora
This is my daughter and I we both have AS hers is completely different than mine. We both tested positive for the gene.
Monday, June 6, 2022
A.S. Face 2228: Kathleen
My name is Kathleen, I am from Washington state, and I have AS. Everyone’s journey is different, and that’s okay. A few years after having my daughter at 31, I started having terrible pains in my mid back. It felt like someone took a sword and pushed it through my back out through my chest. I was training for my 3rd half marathon and thought I had pulled a muscle or something worse. A year later, after multiple doctors throwing everything at the proverbial wall and seeing what sticks did I finally had a Rheumatologist tell me that I had AS.
I went through years of mourning for who I was before AS. Biologics have given me my life back, and I have learned over the past 12 years to find alternatives to things I love. Instead of running, I hike-and WOW, have I found some gorgeous places. This picture is of me hiking in the Olympic National Forest. Some days are worse than others, but I have a wonderful family who supports me and cheers me on no matter what.
You may only be one person to the world, but you may also be the world to one person
Washington, United States of America
A.S. Face 2227: Jessaka
I started having issues in 2020. My first rheumatologist made me feel crazy, he kept saying I have fibromyalgia… wouldn’t even check my back after it locked up (I also had wide spread body pain)… I forced him to send me to someone else… within 4 months of seeing my new rheumatologist I was diagnosed with AS and damage was already done. I am negative for the gene as well (but did research and browsing my DNA on 23 and me, I have the other 5 genes associated with AS). I am currently 29, mother of 3, I went from working in a tire plant and lifting 50 pounds regularly to now fighting disability. I am in pain management because surgery isn’t an option. Disability has said I can’t work any past jobs but I’m still fighting them. Praying for a good outcome. Some days mentally, I’m ok. Other days I can’t believe I have to do this for the rest of my life. I know many understand but it’s exhausting. I wish I could be who I was 3 years ago. But still a warrior and going to continue fighting, even if it’s with myself.
Oklahoma, United States of America
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!
Friday, June 3, 2022
A.S. Face 2223: Amy Goodwin
My name is Amy Goodwin. I am 46 yo. I was diagnosed in 2012 after my sister was having back pain and her doctor tested her for the hla-b27 gene and it came back positive but no disease. My doctor tested me as well and it was positive and my MRI confirmed the diagnosis. All the random medical problems I’ve had since my teens, that didn’t have any explanation, started making sense. I’m on disability now and I’m doing what I can to live my best life possible.
New York, United States of America
Thursday, June 2, 2022
A.S. Face 2218: Deanna
I have always been stiff and (in my mind anyway) uncoordinated. But I have a cheerful attitude and always wake up smiling. My nicknames have always been along the lines of Sunshine, or Energizer Bunny.
After years of dealing with a very stiff body, at age 55, my back and Achilles’ tendons hurt so much, I could barely walk. I went to doctor after doctor trying to figure out what was wrong. I do not have the HLA-B27 gene, and am not a young male, so the doctors were stumped. Finally at the end of 2016, I went to the Mayo Clinic. They looked at my MRIs and said it was pretty easy to see that I had AS. At least now the thing that made me so miserable had a name, and was something that I could fight.
The journey has been challenging. The fatigue that we all know so well caused depression, which is something I’ve never experienced. Friends and family don’t know what to think or how to react. But life marches forward. Now I accept that energy is a finite resource, and I just have to learn to balance things. Having the AS support groups has been a lifesaver! Hearing other people’s stories helps us realize that we are not alone. The picture attached is me on a Pink Jeep Tour in Sedona, AZ, my happy place. 😀
A.S. Face 2217: Lenora
My name is Lenora and I have AS. My father has AS. We are both HLA-B27 positive. I was officially diagnosed at age 49, several years ago. I’ve had various issues since my 20s. Most of those issues were attributed to the wear and tear of teaching, parenting and being overweight. In fact, most of my issues were blamed on my weight. It’s very frustrating being dismissed by a doctor who says “if you’d only lose weight you’d feel better.” Like I haven’t tried? BTW that same doctor tested me for the HLA-B27 gene after my dad was diagnosed and told me I was NEGATIVE! (More on that later) That was way before we could see our tests results ourselves. Grrr. All of those years I believed it was all my fault. I found a wonderful doctor who diagnosed me with Polycystic Ovarian Syndrome. All of my neck, back and hip pain that was attributed to my weight didn’t go away after I lost 90 pounds. I lived with it. Life is busy. At 49 when my hands were so affected and I couldn’t stand the pain anymore, I went to my current PA crying. I told her about the old HLA-B27 test. She dug through stuff. It was POSITIVE! That doctor lied to me. My current PA did a bunch of labs and x-rays then referred me to a rheum. It’s been 2.5 years of ups and downs finding meds that work for me but I keep moving forward. What else can we do?
Sunday, May 29, 2022
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
Saturday, May 28, 2022
A.S. Face 2214: Gary
Hello to the group and fellow AS friends. I am Gary and I live in Virginia in the states. I am currently 68 years old and was diagnosed with AS when I was 18. I was lucky to be diagnosed as young as I was by a relatively young, right out of med school internet.
Throughout my life I have been able to hold down an office job as Payroll Head for a little over 40 years. I was so fortunate to have caring bosses who worked with me during my very low times. Throughout those years I missed a lot of work days with my flares and a few surgeries. I retired 4 years ago and have been trying to keep as active as I can.
My neck, left ankle, right wrist and the bottom part of my spine are fused either naturally or surgically.
starting when I was 18 I was on NSAIDS until 2011 when I went into kidney failure. At that point I found I was stage 3A CKD. At that point I was taken off all NSAIDS and placed in biological. I was also put on different pain pills which just took the edge off of the pain. I am currently on Enbrel and Hydrocodone along with a muscle relaxer, Flexeril at night.
Just in the last two years I have started using canes and walkers to get around. I must say that took a lot to put my pride aside and use what I have to just to get around and stay active as I can be.
I was married for 29 of those years but sad to say my ex could no longer handle the stress of my AS on her. I have two wonderful sons and Daughters in law who are very supportive. I also have been blessed with 4 grandchildren.
Thanks to all the AS support groups on Facebook for their help and support!
Virginia, United States of America
Friday, May 27, 2022
A.S. Face 2212: Sanjo Jendayi
Peace & Blessings!
My birth name is Deserie Johnson but I write and perform under Sanjo Jendayi.
I was a sickly child growing up battling heart issues and seizures. I walked with my feet turning in (pigeon toed) and would trip over my feet. I had surgery when I was in 9th grade where they cut my hip bone, turned it outward some, put pins in it and left me on crutches for 6 months. A year and a half later they took the pins out and once again, I was on crutches for 6 months. Both times I had to re-learn how to walk again.
In my 20’s, I would have these really painful episodes where my back would just give out randomly. Doctors ran many tests and put me on many meds that did not help the pain. I went through this for years with different ‘possible’ diagnoses but nothing definitive. The pain had gotten so bad that I would be bedridden for weeks at a time. I had to have a cane and crutches handy at all times because a flare could happen at anytime.
My children had to help me get from the bed to the bathroom or I would crawl if home alone. I hated this life for them.
One day I awoke and couldn’t hear at all. Doctors put me on a high dosage of prednisone that made me gain 30lbs in 7 days. I didn’t even recognize myself when I looked in the mirror. My eyes were bloodshot red and my vision was blurred. Too many MRI’s, x-rays and doctors but no answers. I saw doctors at John’s Hopkins and Hodgkins, Lupus and a few other dis-eases were floating around.
Finally, in 2002, I was seeing a rheumatologist who took a blood test and an x-ray and voila! I was involuntarily inducted into the Ankylosing Spondylitis Warriors. He referred me to NIH for an AS study where we tried several different meds but nothing really helped.
Since then, I’ve been diagnosed with SARCOIDOSIS 2004 Skin, Liver, Lungs, Spleen
FIBROMYALGIA
LUNG CANCER SURVIVOR 2006-2 Titanium clips left in chest
CHRONIC IRIDOCYCLITIS
UVEITIS
HBP
PERIPHERAL NEUROPATHY
GERD
Pericarditis 2015
THIAMINE DEFICIENCY 6/2019
Mild Diffuse Interstitial Lung Disease 12/19
Pulmonary Pleura
Left Ventricular Hypertrophy 2020
Diverticulitis 2020
Atelectasis May 2021
Bilateral Sacroiliac Disease 2021
Sacroiliitis -12/21
Probable Bartholin cyst
During all of this I wrote books and performed Spokenword poetry. In 2013, I decided to take my life back by changing my eating habits, walking when I could, doing mini exercises when bedridden, learning more about each of these illnesses and going on a spiritual healing journey to get to the root cause of it all. Today, I’m in much better spirits and health. I am a Holistic Health Practitioner practicing several natural modalities to help others.
DON’T EVER GIVE UP! Our mindsets while battling illnesses is our most powerful resource. Hold on. Visualize yourself whole and healed and FEEL the feelings that go with that vision. See it daily. Talk kindly to your body, congratulate it for carrying you this far, then start thanking your body for healing from the top of your head to the souls of your feet. Let’s give AS a swift kick in the A*s!
Thank you so much for putting faces to Ankylosing Spondylitis.
Maryland, United States of America
Thursday, May 26, 2022
A.S. Face 2208: Kirsten Conrad
A.S. Face 2208: Kirsten Conrad
My name is Kirsten Conrad. I was diagnosed at age 30 and have multiple family members with a history of Ankylosing Spondylitis. After having my second son, I started to have pain in my elbows and lower back. After ruling out other issues, the diagnosis of AS was thrown out. Throughout my life, doctors had told my father (who also has AS) to watch my brother, but I was not an issue since I was female. Needless to say, the diagnosis was a shock for my entire family.
After being diagnosed and sidelined from many of the things I loved over the course of the first 6th months of being diagnosed, I simply decided I was no longer willing to let AS control my life and ability. I started back with training for a half marathon, and completed my first half marathon one year after my official diagnosis.
It took some work, but I have been able to switch my mindset on AS. When I was first diagnosed, it took a long time for me to accept and move forward. Now, I use my AS as an additional motivator. I coach teams for both of my kids, work with preschool children, volunteer with our school’s PTA, and travel internationally with my husband.
Simply put, life is short and AS part of my life, but does not control it. I plan on continuing to live my life to the fullest!
Kansas, United States of America
Monday, May 23, 2022
A.S. Face 2207: Stephanie O'Connor
A.S. Face 2207: Stephanie O'Connor
Hello, my name is Stephanie O'Connor. I have Anklyosing Spondylitis. I'm 51 and wasn't diagnosed until I was in my 40's. It started in my teens I figure. I suffered in my pain most of my life. I never saw Dr's and when I did, I was dismissed. Later in life I started seeing Dr's more frequently. Was referred to 3 Rheumatologists. First said " you have Fibromyalgia go home theirs no treatment". The 2nd ordered tests and saw all the abnormalities in blood work, x-rays, MRI'S. I was then sent to pain mgmt for pain relief and referred to another Rheumatologist with more experience. He then pretty promptly ordered his own tests and began me on Azathioprine and Remicade. It's been a life changer!
I feel that it took so long to get a diagnosis due to the fact I'm a woman. Many still think women don't get AS!
I want to say NEVER give up.
Finding a Dr experienced enough is really really tough.
Your not alone.
Arkansas, United States of America
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