A.S. Face 2012: Jenifer Bryan

A.S. Face 2012: Jenifer Bryan



My name is Jenifer Bryan I’m 43 I have been dealing with all kinds of things going on with my body. I had no clue at all. About 12 years ago these knots showed up some would go away but some stayed. I was scared very scared. My mom died at 54 I was feeling some of the same stuff that she was feeling. I can remember her always in pain. But OMG she was a tough woman. I do understand her pain now. I will never know if she had AS or what she what was really had. Oh, I miss her daily! So 3-4 years ago I started looking into gastric bypass I found (2015)out that I was diabetic. Right then I changed what sugar I put into my mouth. But that was not enough. I still hurt I couldn’t get out of bed. I kept this all to myself never really had insurances until 1-2107. So I start finding out what was really going on with me... the first doctor I talked to OMG she understood me she looked at me and said I will help you. She ran all kinds of blood work I thought I was going to run out of blood.. lol But hey I did not!! So my labs came in she had that look. I will never forget it. She look at and said you need to go out to a specialist.. so she sent me to my first  rheumatologist boy that was a no good. The Dr told me that it was all my weight.. I tried to tell her NO but wait I was over 470pounds give or take. That my weight was at 365 that day what her nurse did.. but she is not listen to me. Went back to PCP.. so she sent me to a wonderful doctor (rheumatologist) but ohhhh it was a 6 months wait!! Ok in the mean time I went to a Allergy&Asthma doctor I found out that I have urticaria boy that a fun one.. then my day with the new doctor! I was in shock he was amazing he understood me as well.. he ran more labs. Then I was b27+! I still trying to find the right medicine that is for me. But with God’s help we will find it and God will give me the reason to fight.
I have 4 children 26,24,18 and a6 year old as well. One grandson 2yrs and one one the way! I have to fight I will keep fight I love my family!

A.S. Face 1961: Kellie

A.S. Face 1961: Kellie



I am Kellie and I am a warrior who suffers from AS.

A.S. Face 1771: Rachel Huard

A.S. Face 1771: Rachel Huard

My story officially begins in 2006, although I have had health problems my entire life. While in my Junior year of high school, my knees began to inexplicably swell. I went to several doctors and none of them could find a reason for it. The swelling got to the point that I could not walk without crutches. It was a terrible time for me to become sick because at 17, my parent’s health insurance dropped me. This was before the Affordable Care Act and parents’ insurance policies didn’t have to keep you on for an extended length of time. My first rheumatologist diagnosed me with Lupus, largely based on a positive ANA test. After two years of failed treatments and just becoming more ill, I convinced my PCP to refer me to a different rheumatologist. Within ten minutes of meeting me, this new doctor was convinced I have AS. He sent me home to do some research and decide how I would like to tackle this new beast of a disease. I decided to go as aggressive as possible, being only 19. We started a round of DMARDs and my first Biologic, Remicade. I was on Remicade for about two and a half years before it lost all efficacy. Since then I’ve been on pretty much every biologic on the market. I have now been on Cosentyx for a little over a year and to be honest, I feel like it’s fizzling out. When I see my doctor next I will ask to up the dosage. Having Ankylosing Spondylitis isn’t easy, but I’ve found ways to work with it and live my life as best I can. We truly are all warriors kicking AS.

A.S. Face 1430: Darleen Placey

A.S. Face 1430: Darleen Placey

I am from Colebrook NH, I am 44 years old.  I was diagnosed when I was 39.  I suffered for at least 2 years before anyone could figure out what was wrong with me.
New Hampshire, United States of America

A.S. Face 1212: Aaron Leonard

A.S. Face 1212: Aaron Leonard

 

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A.S. Face 1200: Jamie Coman

A.S. Face 1200: Jamie Coman

I have had ankylosing spondylitis for 15 years, along with a few other diseases. People often say I don’t look sick, or you’re too young to have that many things wrong with you. I am from Raymond, New Hampshire. My name is Jamie Coman, and I’m a rock star :)
New Hampshire, United States of America

A.S. Face 1143: Suzy Seagroves

A.S. Face 1143: Suzy Seagroves

My name is Suzy Seagroves.  I was diagnosed with Ankylosing Spondylitis two years ago but I am sure I’ve had it a lot longer than that.  I teach high school science and lead a group of students to build houses for Habitat for Humanity.  This is the house we finished in Miami. We are going to Almost heaven Habitat in West Virginia this year.  I ache but I do what I can.

A.S. Face 1112: Simone

A.S. Face 1112: Simone

Hello, my name is Simone.
I am 23 years old and have been a sufferer from childhood. Constantly back and forth to the doctors with my mom for them to only tell me I am growing, it is stress, and that i am too young to be in all this pain. It all started with my legs they would always ache and i could not walk. this leg pain lasted over 10 years and then my hands started to hurt and my shoulders and hips. I was always sick as a child and have asthma and tend to have bronchitis and upper respiratory infections often. I was also diagnosed with IBS and my stomach hurts often more so at times that i dont even want to eat. I am always fatigued and have vitamin D deficiency. For the past 2 years has gone down hill. I got sick back in April with what was thought to be strep throat and it turned out to be an “ulcer” in my vocal cord and I was sick for 3 months. After a month of my throat feeling better i got sick again this time with bronchitis and since then i am not myself. The pain is so much worse now than ever. I cant breath because it hurts and my ribs hurt. I cant sleep because my body feels like it is putting to much weight and pressure on myself so a lot of the times i am awake. For the past two months i have not been able to shower normally because standing has become so tire sum and painful. For the past 4 years i have been working with individuals with intellectual and physical disabilities and i am afraid i am becoming too weak to perform and i am denied assistance. I now see a doctor at a spine clinic which i go for PT and Chiropractic which helps me become loose when i am stiff but only for a short time, I go 2 to 3 times a week which is very costly. I swim on occasion but have been so tired and have no energy to do anything extra and have also become very depressed…. I cry all the time from pain and I have been dealing with pain my whole life. I thought having answers would help but it doesn’t because i am afraid…afraid of my future… I am 23 years old and I need help so that I can do the right things so that i can keep my body working and moving as long as i can. I have met the love of my life and soon to be married but i fear for what may come. I want to spend more time enjoying myself and don’t want to become a burden on my fiancé even tho he takes care of me now when i am unable to build up the energy to do my normal routines I just want as normal as possible for him and I….. Please help! I am not a medication taker and believe more of a natural and spiritual healing. God has a special place for me but its is becoming so difficult each day. I am desperate for support and advise.

A.S. Face 1002: Michael Lemieux

A.S. Face 1002: Michael Lemieux

My name is Michael Lemieux.
I’m almost 50. I’ve been disabled for 11 yrs now. Symptoms I realized started when I was a kid. About 30 yrs of age AS kicked into overdrive. I stepped on a coathanger and got a staph infection. That’s what turned the AS on high. My hips, lower lumbar and neck are fused. My lord the pain is hard to deal with sometimes. My knees are locking up on me now. I’m getting Uflexxa injections this week. Hoping it helps me. I am an excutive chef. Made a great living cooking. Now there’s no way I could stand all day doing that anymore. I miss terribly.  I do anything to go back to the kitchen again. Fate has taking me in a different direction. As crazy as it seems AS made me a better person. I now realize how special life is and have been humbled more than I was ready for. I was a tough guy to work for. I had a stanard to keep. I wasn’t an ass. But I did expect things to be done the right way. Now I have come to realize what the meaning of life is all about. It’s not money, fame, power or anything like that. Its all about love. Simple – end of story. People don’t die wishing they worked more. They wish they were loved and that they loved enough. I’m  a father of 2 and 2. The girls are older.. the boys are younger. We are now at this moment starting the emptynest life at home. Our youngest just left for college. Just my wife and I are home now. She works 12 / 14 hr days. Just me and the dog are home during the day. We have 2 grandchildren. 1 of each. Collin was born premy. 1 lb 14 oz. He is now 2 and amazing. Then his little sis is a yr old. Our Icing on the cake. So far I recommend it. If having grandkids was like this, we would of had them first. We are truly blessed. AS has been a road I didn’t want to drive on. I’ve learned more than my doctors. First dr. though it was all in my head. If I could make this stuff up. I stay positive. What would bitching do? I enjoy life. I am blessed with a great family. I have many life long friends. Plus I try to give what I need returned. Helping people always comes back to ya. It pays to be kind. So we pay it forward if we get an abundance, we share. Like I said it’s all about Love. AS taught me that.  That’s the story of my life.
God Bless, Mike
Picture of my wife Sheila and I with our grandchildren Collin and Delaney
New Hampshire, United States of America

A.S. Face 0807: Amy Millios

A.S. Face 0807: Amy Millios

My name is Amy Millios….I am 36 and live in Andover, NH.  A year ago last May I was diagnosed with AS, and life has certainly been challenging.  After many years in human services, and almost as many in IT, I can no longer work and have joined the ranks of the disabled.  But I’m hoping this is temporary.  While I work to develop an optimum diet and exercise routine, I am also planning to apply to graduate school.  Each day is precious and I continue to discover what is most important to me.  I do get discouraged at times at what I can no longer do, what I used to be able to accomplish with ease, but I do my best to not focus on it.  I choose instead to focus on the possibilities.  A former teacher and mentor gave me a poem awhile ago that helps me in this…it’s by a poet named Kay Ryan, entitled

“Patience”

Patience is
wider than one
once envisioned,
with ribbons
of
rivers
and distant
ranges and
tasks undertaken
and finished
with
modest
relish by
natives in their
native dress.
Who would
have
guessed
it possible
that waiting
is sustainable–
a place
with
its own harvests.
Or that in
time’s fullness
the diamonds
of
patience
couldn’t be
distinguished
from the genuine
in
brilliance
or hardness.

New Hampshire, United States of America

A.S. Face 0717: Daniel Peña

A.S. Face 0717: Daniel Peña

Suffering from AS since I was 18, and finally got diagnosed at 24. Is great to
hear from other people that share the same problem. Originally from Mexico,
currently living in Hanover, New Hampshire.

New Hampshire, United States of America

A.S. Face 0695: Dave

A.S. Face 0695: Dave

I have suffered with AS for 24 years, but diagnosed 14 years ago.
New Hampshire United States of America

A.S. Face 0553: Jennifer McAlpin Olberg

A.S. Face 0553: Jennifer McAlpin Olberg

My AS Story, By: Jennifer McAlpin Olberg
I am 41 years old.  I started having severe lower back, SI joint, and sciatica nerve pain during my first pregnancy, at age  19, in 1990.  I started having this pain mostly during my third trimester and mostly on my right side.  I knew that most of this pain could be normal near the end of a pregnancy, but as my due date came and went I was at the point where I could barely even walk.  I went to my primary care physician because of the amount of pain I was in.  The doctor actually put me on Demerol pills for the rest of my pregnancy, which ended up being ten more days.
After my daughter was born, the symptoms and pain seemed to go away for a little while, (Maybe 3 months) and then one night as I was leaning over her cradle to pick her up I was brought to my knees from the lower back pain and pain that shot down my leg.  I went to see my doctor, and he first had me referred to a neurologist, as he thought it was a sciatica nerve problem.  All along, this had not been a constant pain and I would refer to the episodes of pain as “flare ups”.  The Neurologist did their normal routine examination and testing and found nothing so I was then sent to an orthopedic doctor who did x-rays (which showed nothing) and said he had no idea what was going on and couldn’t help me.  For the next year and a half I just dealt with the fact that I had these random “flare-up’s” that were causing severe pain in my low back, buttocks and  pain that went down my leg.  After my second  pregnancy which was in 1992, Things seemed to be about the same and not getting worse so I was just dealing with it as the “flares” were happening every few months and lasting about a week.  I would just take Ibuprofen at the time at that seemed to take the edge of enough for me to take care of my babies, although some days I did need help.
Finally, in or around 1995, I switched doctors because the flares were getting worse and more often and my doctor seemed clueless as to what to do next.  The new primary care suggested I see a Rheumatologist.  The Rheumatologist did MANY different sets of blood work, x-rays, bone scans and MRI’s, to name a few of the tests.  His first thought when I was explaining everything to him was that I had AS.  He said it would be hard to prove this and confirm this as a diagnosis, but that this was the route he was going to go in treating me.  All of tests came back normal, even the HLA b27 came back negative the FIRST time.  After many different NSAID’s that did not work, hobbling into his office with a walker at 25 years old because I could barely put any wait on my leg, and at this point the “flares” were changing sides each time I had one, He decided to re-test the HLA b27 due to the fact that I have an Uncle and a cousin with AS.  This time it came back positive.  I think the negative result the first time around was a mistake from the lab and he did not get the right test back for me.  He got two positive HLA b27 blood test results at different times a year after the negative one.
So, now I have been seeing him for 5+ years with a positive blood test and finally showing some type of change on my lower back and SI joint on x-rays, but he still won’t give me the official diagnoses of Ankylosing Spondylitis.  He was, however; going to keep treating me as though this is what I had.  So let’s keep putting me on more NSAID’s and some steroids. My “flare up’s” were now happening quite often and lasting longer and longer (sometimes 2-3 weeks).  Sometimes they were to the point where I couldn’t even move my legs.  My husband would have to carry me to the bathroom.   I couldn’t take it anymore!  I could barely go from sitting to standing or standing to sitting without excruciating pain and crying.  Nothing he was doing was working, my stomach was killing me from all the NSAID’s, every time I was in his office I could barely walk and was either in a wheelchair or using a walker.   So after 10 years of seeing him, I left one day and never went back.
I found a new Rheumatologist in 2006 who was willing to take on my case even though, come to find out, Dr. Samuels, from Dover, New Hampshire, (the Rheumatologist I had left) had not kept hardly anything for records on me as far as tests he had done, medications I had been on, and even that he thought I had AS and was treating me for it even though he didn’t give me an official diagnosis.
The new doctor I was going to see was much further away (2 hours), but I needed a fresh start.  At my first visit he did a set of x-rays and blood work and I was diagnosed with AS before I even left his office!
I felt this big weight being lifted off my shoulders.  Finally I had a diagnosis and didn’t feel like I was going crazy.  For so many years I felt as though Dr. Samuels would just shake his head and look at me like he just didn’t know what to do since nothing was working, and my x-rays and other tests weren’t showing “enough” change, that I was losing my mind.  Not only from the pain, but because they couldn’t find anything wrong with me.
The Rheumatologist I was now seeing, Dr. Freeman, started me on Enbrel since all of the NSAID’s I had been on had done so much damage to my stomach that I had also in between this time had to have surgery.  The Enbrel was like a dream come true, and accept for the daily morning stiffness and some pain (maybe a 3 on the pain scale instead of 8-10 I had been dealing with), I thought I finally found a medication that will work.  Well, it worked for 8 months and all of the sudden I had a huge “flare up”.   We decided to switch to Remicade.  I have been on Remicade for 2 years now and it has been working well.  I still have stiffness and pain in the morning, but once I get up and around I am pretty good until mid afternoon.  I have had to have a port put in twice.  The first one was put in after a year and a half of being on the Remicade infusions because my veins didn’t want to cooperate anymore.  The second one was put in 7 months later because the first one failed, which is very unusual.   I also just found out 3 weeks ago that Dr. Freeman past away suddenly and that I had to find another Rheumatologist.  Luckily I have found another one and just had my first appointment with him.  His name is Dr. Bowers and he treats many patients with AS.  He believes we should keep going the route I have been going until it doesn’t work anymore.
One more thing I would like to mention about Dr. Samuels, the first Rheumatologist I was seeing.  When I finally got my diagnosis of AS from Dr. Freeman, I applied for SSI Disability.  I had 3 doctors who filled out the paperwork and were all in agreement that I simply cannot work.  Unfortunately, since I was having so many problems and flare up’s very early in my disease and could not hold down a full time job, my eligibility date goes back to 2001.  In order for me to be able to obtain disability benefits, my doctor from 2001 has to fill out the paper work and say that he believes I was disabled back in 2001.  Well, guess what….Dr. Samuels won’t do it, and because of his lack of record keeping and no diagnosis, there is no way to fight it.  I did hire a lawyer and everything, but because Dr. Samuels was unwilling to cooperate, we were never able to go before a judge and plea my case.  Dr. Samuels is the only doctor in 2001 that was treating me and would be able to help me and he refuses!  Unbelieveable……
New Hampshire United States of America