A.S. Face 2180: Shelly

A.S. Face 2180: Shelly

A.S. Face 1704: Ivy Eagleton

A.S. Face 1704: Ivy Eagleton

My name is Ivy Eagleton, I’m a 33 year old mother of 3 girls ages 9, 3 and 1. I’ve been dealing with the symptoms of AS since I was about 17 but was only diagnosed about 6 months ago (I only learned of it by watching a YouTube video). Boy does it make having little kids a challenge! Some days I don’t think I would make it without a supportive family. But together we push through.

A.S. Face 1176: Libby Lozano

A.S. Face 1176: Libby Lozano

Most people who know me or others who meet me are happy to see me as I smile when I greet them.  I am 62 years old and I am happy in my heart and in my mind.  I have over the years managed to hide what is going on inside my body. For so many years I have been reluctant to share the pains that decides my day.  Recently I read on this website someone describe AS as the invisible decease….oh so real….when I do share my condition they look at me and see nothing on the outside that appears to be wrong.  I am putting my faces out to you, hoping to find the matching ones.  My face today is burning up inside, after 25 years DRUG FREE, in the last 10 months I am now doing weekly injections of Humira, hydrocodiene 200 mg X 4 daily and just maintaining, just completed a prednisone 6 day pack. As I write I am fusing in my right ribs that are attaching to my spine and breast bone, my hips are grade 4 fusing as I speak, my SI joint is fused totally on the left the right side fusing, almost done .   I have an appointment in a week for a re-assessment…more drugs or increased dose of Humira…yeah…I know you have been there done that…or still doing.  On and on I go….sorry….that is what I said to my boss and co-worker who witnessed me having a “cramp” in my hip….excruciating pain until I could breath and walk it off…they were devastated and felt helpless.  I hate when that happens in front of other people, usually that happens in the morning at home when I am alone…. limping, gritting my teeth, small breaths doesn’t always work.
Here is my clinical face,  I have AS, I am positive for HLAB27 (my Father was positive), and I have had 3 bowel resections I am missing 11 inches.  I had a SED rate as high as 111 at age 30 I was hospitalized for a week with steroids and water therapy-they put me in a body sling and placed me in and out twice a day.  I have iritis in both eyes have had my left eye injected with cortisone.  Shingles both sides, two intense episodes three mild events.  Medicated to the hilt for the “flame ups” since I was diagnosed at age 22.  I choose prescription drugs OFF and ON through the years because they made me sick to my stomach and diarrhea was a given.  I have multiple food allergies, do not eat food from a box, I drink RO water only, I do not do low fat, nonfat, I do not do artificial sweeteners they make me sick.   I love salads they do not love me.  I love my salsa and green chili, I make my own.  Red chili and beans are a no no…I do that on a Friday and happily suffer the consequences over the weekend before I go to work Monday….yeah you know what I am talking about.
I am back from my MD appointment on February 3rd.
My doctor confirmed that my ribs and hips are fusing together at a place on the right side and my ribs and starting to fuse on the left side.  My SED rate is 9…go figure.  The hydrocodone and the Humira are not enough together for the pain.  Opana is what the MD said I need now.  The pain associated with the fusion is more than I can bear at times.  When I started this story I want to say so much more.   I hoped that I could let you know that I am better now.  I am not.  Everyday gets worse.  I am putting this “work in progress story” out there hoping that maybe someone has been through fusion in multiple areas at the same time and can encourage me to hang in there …tell me when the fusion is done I will be better…damaged but less pain.  I have read pros and cons about Opana….I want to hear from AS people like me about Opana.  I trust my doctor an expert with experience on AS. I am going to start Opana on Thursday 5 mg daily gradually build up until it can make every day bearable until the fusing stops.  I need the best….that is why I need to hear from YOU.
Smiling always…hopeful…praying to the God who sustains me.
Desperate in Wyoming,
Libby Lozano
Wyoming, United States of America

A.S. Face 1149: Heather

A.S. Face 1149: Heather

Hi!  My name is Heather and I am 29, from Laramie Wyoming.  After having ongoing problems as a child with my joints, and even several surgeries, I was finally diagnosed with AS in 2008.  I have two wonderful children and an amazing husband!  My husband has been there for every step with me!  The saying that I live by is, “It may slow me down, but it will NEVER stop me”.  There are times that I am wheelchair bound or needing the assistance of a walker or cane, but I push through it knowing, this will pass and I WILL have another good day!
Wyoming, United States of America

A.S. Face 0886: Marcy Standish Heil

A.S. Face 0886: Marcy Standish Heil

Hello fellow survivors my name is Marcy Standish Heil I am 37 years old I am from Wyoming and am married to an amazingly helpful and supportive husband named Ray and have two beautiful kiddos that keep me moving constantly and wear me out relentlessly. But most of the time I smile through the pain and fatigue in fact I’ve made a life doing just that.  I was officially diagnosed with what they used to call Reactive Arthritis and sometimes Reiters Syndrome in 1998 at 22 and then when reactive arthritis was genetically confirmed as AS I was rediagnosed in 2001at 25.
I can remember significant joint pain, and eye issues as early as 15 years old; ofcourse it was chalked up to growing pains and pinkeye then, eventhough my father has Crohns Disease, I didn’t have anyone really pay attention to the pain or fatigue until I had a massive iritis flare up in 1998 that had me in and out of the ER for weeks and the eye dr daily ,it lasted for almost 2years my treatments then included massive amounts of prednisone and Imuran and sulfa drugs as well as prednisone injections straight into my swollen eye atleast once a week. At the end of this flare up that I refer to as my lost years I finally went into some what of a remission when Methotrexate injections were added to my long list of meds. I also went through a nasty divorce followed by a selfish poor me phase until I met my wonderful current husband in 2000.
We have been through so many devastations and triumphs with AS. From medication sickness, mostly percocet and prednisone, to infertility and disability from time to time but he’s always been right there with me, even literally carrying me from time to time.
But the most amazing and hardest gift to accept that he has ever given me besides my beautiful children was the gift of healthcare, my husband joined the military specifically because they could not hold my pre-existing condition against me as so many previous jobs and companies already had, then we miraculously became pregnant right after enlistment and years of no success due to fibroids and scarring from prednisone. Our beautiful daughter Zoey is one of our un explainable gifts and our amazing son Zayden was our second 6 years later through the gift of adoption.
Through all of these years I was on and off of so many drugs but never gave up, even though sometimes it hurt so very badly that my stubbornness is the only thing that kept me going, that and the three loves of my life.
Almost two years ago I was over medicated, over weight and over all of the BS that comes with AS so completely that I decided to try gluten free living after my husband shared the research with me, I honestly didn’t think it would work, but I had been on everything else and had Drs tell me to just get used to this life but I couldn’t keep up with my kids, my husband, my job I couldn’t live that life anymore because it wasn’t supposed to be my life.
Amazingly the diet started easing the pain little by little and I realized I didn’t need my auto refills on humira and percocet any more so I stopped and haven’t touched them since.
I still have pain, every single day I wake up stiff and limp around for a couple of hours, at the end of the day of working on my feet I hurt in my hips and spine, but now my biggest fight seems to be the damage that so many years of prednisone have done to my bones. But I keep on fighting and conquering every single day by day sometimes hour by hour or step by step like so many of us do. Sometimes its all so very heavy that I feel that it will crush me, sometimes it does, but never for very long.
I get up and look at my children and say a silent prayer to a god that I really don’t believe in anymore that I will just function long enough to walk beside them as they take on the world. As of today dear friends I’m still here.
Thank you for listening and caring and to all my fellow warriors just keep on fighting.
Marcy Standish Heil
Wyoming, United States of America

A.S. Face 0485: Katie Allen

A.S. Face 0485: Katie Allen

 At 27 I was diagnosed with Ankylosing Spondylitis. This happened the same time I ended up with a life-threatening fistula due to Crohn’s Disease.
I was in horrible pain for months and my first doctor said I couldn’t have AS because I was a woman. This was 1996-97 before there was so much information available on the web, but I found enough to diagnose myself based on my symptoms.  For many years I struggled with different medications and found Remicaid worked the best. Unfortunately along the way I decided to open my own business and couldn’t afford it anymore, but I was running myself ragged with a restaurant (note to self, don’t do that again!).
Now at 42, I’m finally in remission. I am able to exercise with yoga and even zumba. I have minimal pain periodically, but for the first time in a decade, I can usually remove it with meditation, stretching, rest and Reiki (instead of Oxycontin). One of the worst things of living with this disease is that the pain is hard to describe to someone who has never felt the debilitating effects of this disease. I have been through months at a time where I couldn’t walk without a cane.
I have some fusion in my lower spine, so I’m constantly trying to straighten up. I know when I’ve pushed myself too hard when I walk by a mirror or window and see myself stooped over. And then it’s time to stop.I believe strongly in doing whatever you need to do to find relief. I also think it’s so important to keep moving, even when it hurts. Just a little walk up and down the hall in your house if that’s all you can manage.
You also need to learn to give yourself a break and ask for help or just give yourself permission to rest and heal. I always felt so guilty when I couldn’t do an activity or event because of the pain. I now am okay with saying I’m having a bad day and am not up to it. One of my greatest wishes is for a cure to be found so no one has to go through what I’ve been through with this. I’m not naïve, I know it can come back with a fury any time, but for now I’m doing what I can to be as healthy as possible. I wish all of my fellow AS’ers a good day, as often as possible. And most of all, know that you aren’t alone.
Katie Allen
Sundance Wyoming United States of America

A.S. Face 0307: Robert Lenz

A.S. Face 0307: Robert Lenz

Hi, my name is Robert.  I’m 41 years old and have Ankylosing Spondylitis (AS) and Rheumatoid Arthritis (RA).  I have read most of the IATFOAS stories and learned more about your struggles as I can identify with many people.  OK, here is my story.
I was about 20 years old and living in my TKE Frat room bed when I woke up and could not walk or hold up my weight.  What the hell!?!  I had not drunk that much the night before.  I had to have my girlfriend at the time rent some crutches until I got “better” and could walk on my own.  I saw 2 orthopedic surgeons who took X-rays and concluded that I had some “normal” arthritic activity in my hip sockets and I was ok and told to go away.  The pain went away and I planned for eventual new hips sometime down the road. Life was good but I did not see what was coming.
I would continue to have periodic episodes of flares that seemed to happen in the fall timeline and it was hard to explain as I did not know what was going on.  I was told to take some aspirin as the docs did not ask the right questions.  My “hips” would hurt and I would see another orthopedic surgeon and would be given the same useless bit of advice of some wear and tear in the sockets and BTW you need to lose weight.
I was able to train and complete a full length (140 mile) Ironman race in 2006.  A year later I had an episode of Iritis, but the eye doc did not know what my regular doc knew and I did not know to tell each them of this issue (who knew?).  The flares intensified until I had a four legged walker and then fell flat on my face in front of a top notch orthopedic institute in Naperville where I was confined to a wheel chair which was emotionally devastating.  After a full day of tests the last orthopedic doctor concluded I needed to see an RA doc as they admitted they had no idea of what I had but knew the minimal wear in my hip sockets were not the reason for the excruciating pain that I was in.  To their credit, they got me in the next day to see Dr. Robert Carpenter who was phenomenal!  Dr. Carpenter quickly put together the pieces of my 17 year saga and ordered the tests which confirmed the AS but no RA.  I was started on the usual NSAIDS which of course had no effect.  The insurance company did agree to pay for Humira which turned about to be a miracle drug for 3 years but of course I grew resistant to it.  In 2009 I completed my last Ironman and I “retired” as my hobby required three knee surgeries.
In 2010 I got bad again (hands, hips, knees, ribs, lungs etc.). I was on double doses of Humira and insane amounts of Prednisone which gave me no relief.  My new AS doc did more tests and it turned out that the RA was not prevalent. Dr. Wally put me on Methotrexate (6/week) and changed the injectable to Embrel.  In a month, I was back to a new normal which is still painful but manageable.  I also developed painful Plantar Fasciitis so I got proper ortho inserts and learned to take care of them.
I am going to take the advice of those who suggested the LSD but first, need to lose that weight so off to the juicer I go.  I want to thank the founder of IATFOAS as I feel there is a group of people that I have something in common.  I don’t want this “relationship”, but I am glad to hear of good ideas and to know that I am not alone.
Thanks for reading. Robert
Wyoming United States Of America

A.S. Face 0109: Becky Rae Bury

A.S. Face 0109: Becky Rae Bury

Hi my name is Becky and i have AS. wow!!! I’m sitting here thinking how to put all of this down.i will try my best but it might be a scatter as that is how it all happened ! i can remember being in pain as far back as 7 years old. i always had pain in my low back,pain in my right hand,pain in my right eye,rashes on the back of my head and bad pain trying to urinate. my mom had taken me in but the doctors could never figure out what was going on. i didn’t know what was wrong and why i was in so much pain. so many times i would look at my sister and think, i wonder if shes feeling like this and I’m just a weak person? i then had stopped telling my mom what was wrong and i just dealt with it..i thought if doctors couldn’t find out what was wrong then its in my head and I’m just weak and all of the pain was normal and i was told they were growing pains so i just kept quiet for as long as i could. when i was around 11 insomnia kicked in and i would lay awak at night and then i would be so tired at school but i did my best.if i sat down in my seat at school to long my legs felt like they were on fire and the bottom of my spine felt so achy and then i would get stabbing pains in my back and my leg.thank god for recess cause it helped so much to get up and move around.i had good grades in school until i hit 7th grade and pain was so bad from all the sitting that i had to tell my mom… nothing was done and maybe it was that i didn’t push how bad the pain was. my grades started to drop and all i could think about was how bad the pain was.all the pain drowned out what ever the teacher was teaching and once again i just dealt with it,dealt with the pain.i then started having sever foot pain and my step dad looked at my foot and it was swollen and painful so they took me to a foot doctor and they did surgery on my foot where they broke my big toe and my Little toe and put screws and pins in to some how fix the problem. it didn’t help at all..well time went on and so did the pain and when i was 15 i started working as a cna working with the elderly and luckily my sister worked right along with me. there was so many times my back would just lock up and get so bad that i could barely move. my sister would see me in so much pain and she would help me with all my patients and anyone that knows how nursing homes work then they know what a big deal it is having double the patients.. my sister and i worked side by side as cna’s up until i was 19 and so many times she had to help me and i cant thank her enough..as time went on the pain got so bad. all the er trips and finally i just gave up being a cna all together. my back could not take it any more. i got a job at a gym and that’s were i met the man of my dreams,my rock,my support. my dream man  and i got married and had are daughter when i was 20 and after i had her pain kicked in full swing,heart problems,kidney problems,hip pain and most of all rib pain. i went to more and more doctors and had so many spinal injections that never once worked i tried just about everything and they did an MRI on my back and said i have scoliosis and its a 38 degree curve and its what they call a cork screw curve. that is were my spin is twisting into my chest making it painful to breath. i was happy to know all the pain wasn’t in my head but it didn’t explain what was going on with other parts of my body. time went on again and i had my son Bowen just 3 years ago and it was a hard pregnancy i was sick the whole time and they ended up taking him early cause there wasn’t enough fluid to hold and support him and my son was in stress.they started me and i was in so much pain. worst pain of my life. they said the meds they gave me wont work cause I’m was having a spinal pregnancy. meaning my son was laying on my spine. all i remember is looking at my husbands face and he looked scarred and my sister was by me and she was crying cause i was in so much pain. Bowen was born and he wasn’t in very good health so i didn’t get to hold him until the next day.it was so hard being in so much pain and wondering where my son was and if he was going to be OK.his health got better and we got to go home to are small town.6 months went by and i felt sicker and sicker. pain and fevers kicked in but i just dealt with them until last summer i started to grow lumps all over my hands which made it so hard to take care of my son and do everyday activity’s. so i went to the orthopedic in are small town and i will never ever for get him!! he felt my hands and asked me “Becky do you have any family members with RA or any arthritis or auto immune problems??’i said i think so on my dads side. the doctor looked at me and said ‘ you know what? lets do some blood work just to be on the safe side’. well a few weeks later i got a call from him and i thought that was odd cause the nurse always calls. he told me that I’m HLAB-27 positive and my c reactive proteins are threw the roof. he said hes referring me to a specialist and i said what do i have and he told me that hes pretty sure i have ankylosing spondylitis…it didn’t sink in at all what was going on and i had no clue it was serious. the appointment he made me had to be cancelled do to the fact my son was so sick. well life got in the way and i kept pushing my appointment back and money also got in the way.i didn’t think AS was that big of deal cause he didn’t sound to alarmed to me. well winter came and things got so bad that i was in the er and thought i had a brain tumor because all my muscles were jumping and my eyes were killing me and i had such bad vertigo.they did a ct and said it looked good so i went home thinking i was crazy and i was put on a super high dose of antibiotics and everything just got worse. i laid on the couch crying all the time, my husband didn’t know what was wrong my kids didn’t know what was wrong.so i went in to are small town doctor cause the top of my spine was killing me and my eyes were blood shot in pure pain. my doctor asked me a few things and he was trying to piece together what was going  on with me.so i brought up that i had blood work done last summer and gave him the low down on what the orthopedic was testing me for.well my doctor got my blood work tests and said that what i had is very serious and there is no cure but theres treatments that can help.in the mean time before i got into the specialist i was put on steroid eye drops and other steroids to lower my c reactive levels. the day came when i got to meet the specialist and when i went in she had so many x rays done and blood work and gave me the low down on AS. after that day i went into shock and shut my self out from the world! i snapped out of it when i herd my 9 year old daughter saying her prayers before bed and she begged god to help her mommy and to please take the pain away.a few days went by and Jordan my daughter was very upset and i asked her what was wrong and she said ” mom why isn’t god answering my prayers? does he not like me? i ask him every night to help you but your still sick’! i told her hes helping me and he will always answer your prayers Jordan!!! god loves you and he loves me!!!! i told her i will get through this and things will be OK .. to all my friends with AS don’t give up!! don’t stop moving and please fight!!! the way i look at AS is different but it helps me. i tell my AS that its not going to win today and it wont ever win because i will never ever stop fighting it! everything i do i will do in pain but i will do it!!!!!  i always think that i have an invader in my body and I’m not going to let it win!!!!! i have read just about every ones story and you all have touched my heart!!!!! thank you for letting me tell you my story. i have ankylosing spondylitis but it does not have me!!!!!
Lyman, Wyoming United States of America

A.S. Face 0041: Jessica Dyakanoff

A.S. Face 0041 : Jessica Dyakanoff

I am 31 years old and was Diagnosed with Ankylosing Spondylitis and Fibromyalgia when I was 28. It took a long time to get that diagnoses the Drs told me it was all in my head from about the time of 14 years old. I found a wonderful Dr in Denver, Colorado who has me on Remicade and it has changed my life completely. I have lost 55 pounds and have my life back! I still have my rough days but for the most part its good and for now I am thankful that this med is working for me cause for so many of us it don’t.  I have a wonderful family and I am enjoying the little things in life and I am not going to let Ankylosing Spondylitis stop me!

Gillette Wyoming United States of America