A.S. Face 2029: Aimee Reichenbacher

A.S. Face 2029: Aimee Reichenbacher



I am 42 and was diagnosed 2 years ago. I have had symptoms since my teens. I have 3 teenagers and a loving husband. I am unable to work as an Occupational Therapist anymore but enjoy living on a farm and staying as active as I can. Some days are hard, but I try to keep hope through it all.

A.S. Face 2003: Cris Kellogg

A.S. Face 2003: Cris Kellogg



My name is Cris Kellogg and I was diagnosed about 2 years ago.

A.S. Face 1812: Kristin

A.S. Face 1812: Kristin



My name is Kristin. I am from central Iowa. I have been to 5 specialists…rheumatoid doctors. I finally was hurting to bad I wanted my doctor to set up an app at Mayo Clinic in Mn. I was finally diagnosed with AS as well as some degenerative disks and arthritis every where. I have 6 kids (two sets of twins) I also have high blood pressure and high liver enzymes. She wants me to start on a pill starts with sulfa something. My anxiety has been bad. I’ve been up …I’ve been down. Hearing others stories is great. I did get 4 back injections as I was in so much pain i couldn’t walk.

Feel free to ask any questions.

Iowa, United States of America

A.S. Face 1792: Marsha Hooten

A.S. Face 1792: Marsha Hooten

Diagnosed with Ankylosing Spondylitis in 2016

Iowa, United States of America

A.S. Face 1637: Nikki

A.S. Face 1637: Nikki

My journey to an AS diagnosis began over 14 years ago. I started to have low back pain on a daily basis. After several months I saw my pcp. All tests done were normal. I was told to exercise.
Over the next 2 years the pain was persistent and had spread into my hips. I saw several doctors who all said I was fine. Some prescribed PT, while others told me to take ibuprofen. I was starting to feel like it was all in my head. My hips got progressively worse, but there were no answers. This continued for the next 10 years. Each year, I became more restricted on what I could do.
Finally two years ago, my pcp had found a new rheumatologist for me to see. My first appointment, all of my blood work had come back negative for arthritic conditions. The doctor ordered xrays and a pelvis ct. She called me a few days later, saying there was a positioning error on the ct, and she wanted me to have another to confirm. When the second one was done, she had the top radiologist in her facility review it. Their joint diagnosis came back as AS. My left SI joint was completely fused, and my right is about 75% fused. Thankfully even though I had a lot of pain and inflammation, my spine had not begun fusing. I was immediately put on biologics to slow the progression of the disease.
I still am in daily pain. My movements are restricted. I have small and large joint involvement that is getting worse. The fatigue is never ending.
It is incredibly frustrating that AS is still a man’s disease, or a genetic disease. I have no family members with AS, and I am negative for the gene. Yet, here I am. Another face of AS. I suffered for 12+ years before diagnosis. What would my life be like if I had received treatment early on?

Nikki

A.S. Face 1511: Cara

A.S. Face 1511: Cara

My name is Cara. I am 30 years old and have ankylosing spondylitis. It has changed me. Life will never be the same. For a moment every morning as I wake up I fear moving because I am not sure what hurts yet and how bad it will hurt. I am so tired all the time that most of the things I want to do I miss out on, putting my job before my life. My future is a giant scary question mark. There is no way to know what will happen. The only guarantee is pain. It is the most devastating feeling. I can’t even be sure that I will always have a plave to live. When you can’t be sure that you can work, you can’t be sure you have a future. And with all those overwhelming aspects of AS, from money to meds to disability to pain, the aspects of “normal” life are still there. Wanting to meet someone. Will they think I’m pretty? Will they want to go on another date? Will they kiss me? Will they leave because of my disease? Wanting to make more money. What kind of job do I want to do? Can I work more hours? Is there room for advancement? A retirement plan? Will I get along with my coworkers? Can my body take it? Playing with my nieces. Can I make them smile? How was school? Do you know how smart/amazing/beautiful/talented/loved you are? Can I handle picking you up or will I be in pain for days because I did? Spending time with friends. What activities are there in my area? How far are we willing to travel for other activities? What can we afford? What movies are out? Do my friends know how much they mean to me? What am I gonna wear? Will I have to cancel at the last minute or leave early because my body gives out? We are people that have a disease. We miss all the things that we can’t be a part of. No one would choose this.
Iowa, United States of America

A.S. Face 1475: Anna B.

A.S. Face 1475: Anna B.

In the winter or spring of 2007, I had my first case of Iritis in one of my eyes. The ophthalmologist at The University of Iowa relayed to me that this condition of the eye is extremely rare and usually occurs in people with autoimmune diseases. After testing my blood, the physician stated that I am positive for the HLA-B27 gene. They told me that I have a high propensity for either Lupus or AnkylosingSpondylitis. My eye doctor referred me to a Rheumatologist that specialized in both diseases, Dr. Petar Lenert. After a series of x-Rays, the beginning of fusion in my Sacroiliac Joint was identified. He conducted a thorough individual evaluation. With the confirmation of a Radiologist, he determined that my symptoms were positive for AS. He was somewhat surprised for he stated that AS is predominantly a man’s disease – which we now know not to be true. He immediately had me meet with a physical therapist.
Over the course of the past seven years, I have had a series of flare ups and remission. My first steroid shot in 2007 put me in temporary remission until 2011. At that time, I started going to a chiropractor for adjustments on my neck, mid back and lower back. I now know that the adjustments are not advised. One visit caused me excruciating pain in my lower back. Three days later, if I remember correctly, I had to have another steroid shot. This one took more time, about two weeks, to take effect. My employer at the time was not very pleased with the amount of time that I had to take off.
After that point, I had minor flare ups from time to time. I found that exercise and a healthy diet helped to keep my pain at bay. For a time there, from 2012-2014, I was free of pain. The first time in my life since high school and college I was able to run long distances. I ran a few 5k races in my home town close to Minneapolis.
Throughout the duration of my disease, I have always had some kind of pain in the winter. This year it started in mid to late December after having a lot of success with acupuncture. I thought that it would go away like it would in the past. My flare ups are now a daily occurrence with the most pain in between my shoulder blades. I wake up each morning feeling like I have not slept. I have found that hot water helps tremendously. I am now starting Aquatic Physical Therapy at our YMCA in a suburb of Des Moines, Iowa. I have great hope that with time the therapy will help.
In the meantime, I feel very fortunate to have the support of my close friends and family. I am a single mother of an 11yr old that makes me smile with pride.
Although, I may have this disease. I am not going to let it get the best of me. I am willing to try anything to help get me to a point of remission again by managing the inflammation. I have had great success with changing my diet to gluten free and less Irritable Bowel Disease discomfort.
While focusing on my own symptoms, I feel it is also important to increase awareness about this invisible disease. I also feel it is important to spend time with those I love as well as volunteer.
Below is a recent photo of me standing up in the bathroom.

Iowa, United States of America

A.S. Face 1396: Melody Fischbacher

A.S. Face 1396: Melody Fischbacher

I was 35 when I was diagnosed with AS.  I had had a high SED Rate, CRP, and lots of back pain.  I had started having severe pain and issues when I was 31 and pregnant with my second son.  I had days when I couldn’t walk, my hips and lower back hurt horribly.  Shortly after his birth, I had my first MRI, which showed that at the minimum I had a spondylitis of some sort.  A short 4 years later, I finally got my GP to refer me on to a specialist.  That specialist was a Rheumatologist who was the top in his field at the time.  He did every test imaginable but never gave up which most doctors did.  He did some x-rays right there at my first appointment along with all kinds of blood work including looking at the gene for AS.  3 weeks later, I was back in his office for results.  Results again showed elevated levels of inflammation, but not the gene for AS, so that’s where the story begins.  How could I have AS without the gene?  He did some research because he said that he had 4 patients who all had the same symptoms that I was seeing him for.  Turns out two had Lupus, and one had the AS gene and then there was me.  He said although rare, you can have AS without the gene because it is ultimately a gene mutation.  He said it has to start somewhere.  To be sure though, he requested another MRI, of which I have had another one every year since.  Since the first MRI to the one that I just had done in June, the damage from the inflammation to the SI Joints and the hip joints is quite severe.  In fact, I have been told that if I don’t get the inflammation under control that I will be wheelchair bound in less than 5 years.  I have been on and off of different meds since I was little.  I went for immune therapy from the time that I was just a baby. By the time I was 18, I was taking a combination of anti-inflammatories and muscle relaxants.  At the age of 35 I was so inflamed that my left SI joint is already fused to the pelvis.   I have been on what seems like every anti-inflammatory out there.  I have done the methotrexate but had suck a reaction to it, that they stopped that.  Then I found Humira.  Humira worked great until I got pneumonia last year.  I was sick for 6 months—no joking.  Since then the Rheumy has pulled Humira and switched to Enbrel.  It just doesn’t work the same and I get no relief.  So now, I am told my options are SI Joint Injections and a possible surgery to try to slow down the damage to the hips.  My lower spine shows spurs on each vertebra from the mid-back down.  There is not a day that goes by that I am not in pain.  It affects everything—every system—My GI track is messed up, my inflammation levels skyrocketing, and just recently I have been diagnosed with depression which they attributed to having a chronic disorder because of the pain that I am in constantly.  My options are limited for treatment because I am also so allergic to so many things.  It makes this battle even more difficult to treat.
Melody Fischbacher, age 41
Des Moines, Iowa, United States of America
 

A.S. Face 1234: Kelly Rogers

A.S. Face 1234: Kelly Rogers

My name is Kelly Rogers, I am 34 yrs old and I live in Bettendorf, Iowa.
My AS-related pain began in 2001 with neck pain (I was 21). I went to the chiropractor monthly from 2001-2013 for adjustments which seemed to help with the headaches and migraines I was having. I remember the chiro taking an x-ray and asking if I had ever been in a car accident. I told him I had rear-ended a truck when I was 16 yrs old and that seemed to explain what he saw. I saw a neurologist in 2007 for frequent migraines and he said if my husband and I were going to have kids soon I should wait and see if the pregnancy hormones help since I couldn’t be on most medication and get pregnant.
In January 2009 I became pregnant with my daughter. The pregnancy hormones did help my migraines and I felt great until the last few weeks of my pregnancy. She was born in October and in late November I found out what Uevitis is. I’ve had Uevitis 6-7 times in the last 4 years, the longest lasting 6 months. I’ve used oral steroids and steroid eye drops so much that I have a cataract in one of my eyes.
In January 2011 I became pregnant with my son. This time pregnancy was rougher, my hips and lower back hurt most of the 2nd trimester up until delivery. I went to the chiro weekly during my 3rd trimester to try and deal with the pain. After he was born, I had lower back pain but I assumed it was from the pregnancy still. In the summer of 2012 I saw the NP at the local Rheumatologist for random joint pain, some of my fingers, toes, knees, hands, etc. She had me tested for the HLA B27 gene and it came back positive. That, along with the frequent Uevitis and joint pain made her suspect Ankylosing Spondylitis for a diagnosis. She told me to stick with Ibuprofen as long as I could because the only other options were TNF drugs “which may cause cancer”.
In the summer of 2013 I realized I was able to do less and less with my kids. My last Uevitis flare lasted January to June of 2013 so I had been on steroids for a long time and once I came off of them my pain levels increased, even when taking Ibuprofen non-stop every day. I went back to my Rheumatologist NP and she had my lower back x-rayed. I was told it showed “pelvic trauma” which is more than likely due to childbirth, and to come back in 6 months. I was not happy with that answer but didn’t really know what to do next.
In the fall of 2013 my lower back and hip pain was so bad that I was barely sleeping, I was not drying off my lower legs after a shower in the morning or sitting on the floor with my kids hardly at all. I asked my general doctor to refer me to the University of Iowa Hospitals to see a Rheumatologist. In December 2013 I had my first appt there and they did an x-ray and MRI of my SI joints. The doctor seemed to know very little about AS and after seeing her 3 times for more x-rays and an MRI of my neck (after pushing that my pain began there) I left that office. She told me I had AS but never would officially diagnose me, kept telling me I was “too young” to have that much pain and shouldn’t be on so many NSAIDs. Luckily, I was talking to someone on Facebook in an AS group and she mentioned her great Rheumatologist was Dr. Eric Ruderman at Northwestern in Chicago, IL. I was lucky enough to get in to see him and I am SO glad that I pushed for another Rheumatologist. He officially diagnosed me with AS and I started Enbrel in April 2014.
Doing my own research online and finding people through Facebook groups have helped me learn much more than just speaking to a doctor. I keep documentation on my symptoms, medication, etc. and have recently started to blog in hopes that someone can see my struggle and it will help them. You are your best advocate! Document, research, listen and don’t be afraid to ask why.

Iowa, United States of America

A.S. Face 1138: Meegan Dyrland

A.S. Face 1138: Meegan Dyrland

My name is Meegan Dyrland, 34 years old, and I am from Marion, IA
I was just diagnosed with Ankylosing Spondylitis on Friday.  I also have severe scoliosis-(2) 45 degree curves and a twist in my spine
Iowa, United States of America

A.S. Face 0893: Tyler Smith

A.S. Face 0893: Tyler Smith

I was diagnosed with Ankylosing Spondylitis at age 9. I’m now 31. I try and stay as healthy and active as possible. I get along most days, but with each day the pain is unpredictable. I’ve tried many meds over the years, Humira  injections each week seem to help control my AS.
Iowa, United States of America

A.S. Face 0892: Deb

A.S. Face 0892: Deb

Hi!…My name is Deb and I live in S.E. Iowa. I began having symptoms after the birth of my first child in 1981 and was diagnosed about 10 years later. I’m 51, married (to a supportive, awesome husband named, Monte), work full-time, have 2 beautiful grown daughters, 3 precious grandsons,  and 1 sweet (but spoiled) Husky.
Iowa, United States of America

A.S. Face 0602: Liliana Mendez

A.S. Face 0602: Liliana Mendez

Davenport Iowa United States of America

A.S. Face 0243: Janet Vorwald

A.S. Face 0243: Janet Vorwald

My name is Janet Vorwald.  I am 39 years old and live in Iowa.

    I was working as a cake decorator when I can remember my first real flare up (there may have been more before that but I didn’t pay much attention).  It was during the busy graduation season and I just thought it was from all of the bending over.  I went to the chiropractor for a long time with no relief.  He said my hips were out of whack.  I went to my family doctor and got no where.  I couldn’t sleep for more than a few hours at a time because of the back pain.  It was easier to walk around in the middle of the night.  Thought it was the mattress so we got a new one -  that wasn’t it either.

    In 2000 I got pregnant with my second child.  The back pain went away.  After giving birth it came back.  I had an MRI and ultrasound that showed nothing. Went to physical therapy with no relief.  I just dealt with the pain for a few years.  Then one day my eye became very sensitive to light and touch.  I went to the doctor and was diagnosed with iritis (uveitis).  He asked if I had arthritis.  Sayin no, he sent me to my family doctor who ordered a blood test.  That coming back positive I was sent to a rhuemetologist and diagnosed with Ankylosing Spondylitis.  What a whirlwind few months that was.  Insurance wouldn’t cover Remicade yet and then had to wait for them to approve Enbrel.  Once on Enbrel I felt great. Yet, I didn’t feel comfortable with my rheumatologist. He made me feel like a was ‘just another patient’, which I am but he made me feel stupid for asking questions and didn’t explain things well. Hello, I was just diagnosed with a lifelong illness, help me out a litlle.  I learned more from my own research than him. I talked to my family doctor and it was tough but she got me switched to another rhuematologist in the same office. I am still with him, I have had my family doctor for 16 years, my eye doctor for 12 years, and dermatologist for 5 years.  They have been wonderful (sometimes frustrating) with helping me and this disease.  My eye doctor admitted he didn’t know a lot about arthritis and AS and has sent me to another doctor.  I’m thankful he was honest about it.  But throughout the years he has learned more, I’d like to think I had a part in that.

    After having several long bouts with iritis I was switched to Humira. (I have had iritis once in 4 years) I have had a bout with plantar fasciaitis, a bulging disc, constant swelling, hip pain, weight gain, and most of all fatigue.  The pain in my back is minimal.  It is the peripheal joints that bother me most.

    I go to work every day,  have been married to my wonderful husband for 18 years, and am raising two wonderful boys – 15 and 11. They have seen my ups and downs and understand when I have to take a nap.  I just hate for them to look back amd say ‘oh ya my mom slept a lot!’  I hope I have and will continue to educate them enough.  They have both done a science paper on AS which has helped all of us understand the disease even more.  The technology world is wonderful.  I have learned so much and although I don’t know anyone personally with AS I feel like I have have a lot of friends through the ASAP Chat Group.  I like to go for walks, read, decorate cakes (although that is getting harder and harder to do), and go camping.

    It’s not just the back pain, it can effect so many other parts of the body that I didn’t realize.  One piece of advice to everyone is listen to your body.  If something doesn’t seem right, seek help.

    Stay positive ( even though it is hard sometimes) and live life to the fullest.  I lost a sister due to alcoholism and I would much rather fight what I am going through than to have the demons she had to fight.  There will be bad days but there will also be good days.

I HAVE AN INVISIBLE DISEASE BUT I AM NOT INVISIBLE!

I MAY HAVE ARTHRITIS BUT ARTHRITIS DOESN’T HAVE ME!

ALTHOUGH I MAY HAVE TO ALTER IT A BIT – I AM GOING TO LIVE MY LIFE TO THE FULLEST!

Iowa United States of America

A.S. Face 0038: Sara Frankl

A.S. Face 0038 : Sara Frankl

Sara Frankl May 13, 1973- Sept. 24, 2011

Sara’s Story

Sunday, June 1, 2008

Just a Part of the Whole

When I stopped dreaming I could run, I knew for sure my life had changed permantly. The disease I have is called Ankylosing Spondylisti and it’s different for every person that has it, which makes it difficult to predict where your journey will take you. The basic explanation is that it is an autoimmune disease that usually starts in your early twenties amd begins attacking your joints. It is progressive and systemic, but the progression and systems it can affect are as different as your genetic make up. For me, it began in my sacrum (low back) and my spine. The “goal” of the disease is to attack the joint and build scar tissue around it, causing pain and stiffness. Then the scar tissue eventually (for many) turns into bone and fuses your joints together.
Until recently, most doctors believed that AS was a man’s disease and was rarely seen in women. It is now known that it is prevalent in women as well, and they are learning the progression, symptoms and x-ray findings can be significantly different in women than men, which will hopefully be helpful in future diagnosis.For me, over the course of the last 14 years, the disease and my life have changed dramatically. I won’t go into a play-by-play for you, partially not to bore you to tears and partially because all of the years tend to run together after awhile. I will say that in the beginning it was pain like I had never felt before, which was compounded because no one knew what in the world was wrong with me. I had a lot of the knowing nods as if to say, “Oh, that silly little girl is overreacting.” I actually had one doctor ask me if I had a boyfriend that was stressing me out. I wish I could tell you I had a witty comeback for him, like “The boyfriend is fine but I’m finding you very stressful.” But when you are exhausted, sick and in pain all you can think to do is look at him bewildered and say, “No. I’m not sad, I’m in pain.” And sadly, that doesn’t always get you very far.Once the diagnosis of AS was put on the table, everything about my body started making sense, and things that I didn’t know went together turned out to be symptoms of the disease. The pain, the digestion problems, the night sweats, the bouts with iritis. Ahh, the good old days. Things have gotten more complicated since then with breathing issues, swelling of joints and more areas of my body being affected… and the exhaustion. I also have leukopenia, which basically means my white counts remain lower than normal, and actually decrease when I’m sick instead of increasing. This means I have to be ridiculously careful about being around someone with the sniffles for fear of getting pneumonia, which has become somewhat of an expected yearly ritual for me.My life now, to put it bluntly, is painful. If I’m having a good day it means my pain is moderately high at best, and I’ve showered and gotten around my house without having to give myself a pep-talk first. I have someone who gets me groceries once a week and another person who cleans my condo every other week. A year ago I was able to drive myself periodically to Walgreen’s for short little errands, but it’s been a long time since that was an easy trip. I don’t count out that I will be able to do that again, but it’s not in my reality right now.
And living in the now is the easiest way to handle my life. It all changed when I realized that in my dreams at night, I was walking with a cane or crutches. And in my waking thoughts I can’t imagine I ever ran track or jumped over a hurdle without it being painful. I don’t remember what it felt like to not have pain, and while that was upsetting at first, I think it is actually easier this way. I don’t long as much for something I can’t imagine. I think if I dreamed I was running every night, waking up to the reality of having to figure out how to get out of bed would be crushing.
Other than the crutches and the wincing in pain thing, when I’m not on steroids I look pretty average and healthy. And I don’t want to look otherwise. I will write about this as part of my life, but I’m not going to lament endlessly on this blog about my daily struggles and pains and complications. It’s hard for people to understand that just because I’m not complaining, it doesn’t mean I’m getting better. It’s just that when you ask me how I am, I’m more likely to tell you how I am despite my disease, not because of it. I am more than that. I’m more than a sick person. I’m a person who is sick… and as I often tell my mother, my body is brutal but I’m ok.
My life is a difficult balancing act, but I am not being flippant when I tell you that I have a good life. I have a home, friends, love and support. I have that cute dog I’ve talked about at length and I have the time to really be there for people when they need me. This is not the life I imagined for myself, but it’s the life I’ve been blessed with and I won’t take a moment of it for granted. And if you’re taking a moment to read this blog, I’m not taking that for granted either.
Thanks.
Dedicated to Sara Frankl
with much admiration and respect,
We are Choosing Joy Sweet Sara.
Iowa United States of America