A.S. Face 0092: Mary Ann Smith
Mary Ann Smith : AKA AS Mary
Here is my reality and what my life is like with AS
Today is Nov. 6th 2011, I am female, 38 years old
I was diagnosed in 2005
I’m sitting here after reading all of the shared experiences of my fellow ASers and I find that I can see a little bit of my story in each one of them
It fills my heart with much joy and sadness, but everyone has inspired me and given me hope when I had none, especially my boyfriend Jeremy and his Family, as well as our friends in Oklahoma, and my new friends here in California.
So before I begin with my story I want to pass on a quote, I don’t know its origin but it speaks to me, and helps me though tough times
I adopted it from my “Wizard”, the person I call my Wizard, who is one of my doctors, and that is giving me the tools to cope including this quote
“We have the right to feel the way we do, and we have the right to treat ourselves well”
So with that being said I give proper credit to him, his name is Jerome Tepperman, Psychologist in Los Angeles, CA
I recently discovered that AS has always be apart of my life. For a long time when asked, “When did it start?” I could never pin down the exact date.
As far as I can remember my fist symptom started when I was around 3 years old. Throughout child hood (3-14 years old) I was always sick, and in pain. Not the kind of sick, like a cold, but had frequent headaches, upper and lower digestive problems, stiffness, insomnia, fatigue, fevers, seizures, nose bleeds, redness around joints, and swelling. I also have Lupus (diagnosed in 2004) , PSA (2011), Iritis (first time was when I was 7), Enthesititis (2011), Survived Breast Cancer (2000), Permanent damage from car accidents and sports related injuries (ages 5 through some time in my 20’s), PTSD (date unknown), Survived Meningococcal Spinal Meningitis that became septic and put me in a coma for 1 month after I was found clinically dead for several minutes in a CT scan at the emergency room (around 1992 I think), conditional Asthma (only when I’m sick), Cardio Vascular Syncope AKA Vassal Vegas Nerve Syncope (2002), Hypoglycemia (1998), Factor 12 deficient AKA Hageman Factor (2000),
I’m HLA-B27 positive and zero negative for RA
When I was little and showing the first signs of symptoms of AS, the doctors told my parents that it was growing pains, that I needed to drink more water, and eat lots of prunes, and my circadian rhythm was reversed and someday I will outgrow it. Every night I could not sleep, every night I was in pain, every day I was tired, and while at school I got into trouble because I would day dream and sleep at my cubicle. Every night I cried, I would knock on my parent’s bedroom door and tell them that I was hurting. But because of what the doctor said, I was ignored, I tried being persistent, and I kept getting shut out, eventually my parents started locking their door and ignoring me more. I don’t blame them since a doctor told them nothing was abnormal for my age. I was punished in school because my teachers (nuns) thought I had my head in the clouds all the time, when actually I was having one of many types of seizures, they thought I may have had a learning disability. So they tested me and found that I have a little bit of dyslexia, but along the way they also discovered that I was smart. So they put me in a group with other smart kids and bumped me up 2 grades, but I still would have day dream spells (seizures), they always after that said I was so “creative” because I would draw a lot, and was good at incorporating creative writing and facts that go along with my drawings, so they said that I had a problem with grasping main ideas. As time went on I still had intermittent unexplainable pain, I followed in my parents footsteps in martial arts and cross country track, both of my parents were Olympic contenders in their youth, I never quite made it that far, I kept spraining my ankles, I tried so hard that I would ignore the pain and run anyways, I learned how to have a high pain tolerance. I always found myself working 10x harder at everything, I learned how to adapt and hide my physical and emotional feelings. I grew up in the military, traveling, and my parents were never home, so I had to fend for myself for a long time, I was always depressed and in pain for reason that were unknown to me or anyone else. To this day I have very few good memories of my childhood, but had lots of good adventures. My memories were over run by fear, pain, and depression. Reflecting back on the memorable moment of pain of my child hood, it coincided with stress and anxiety. I was always harder on myself when things went awry. My parents use to joke about how they did not ever have to punish me because I was always harder on myself then they would have been, they never had to ask me for a report card, they never attended any events of extracurricular activities, they were more focused on other things, and was in the habit of ignoring me. I love them to this day very much after I learned how to forgive them and myself and just let go. After all they were not borne with the perfect parenting guide book, if such a thing exists, their parenting guide book was the bible and what they experienced from their parents, not to be specific but what teachers and doctors told them to do.
Yes I have had a difficult life, but I have seen so much worse, and it would take several years to write about every little detail, funny I can’t remember most of the details, and it’s probably a good thing. I had a great and rewarding life with and with out AS and its complications. For years I was in denial of all things negative, and had nothing positive to say about myself, and regrettably critical of others, I just overlooked my aches and pains, I adapted and survived nothing more nothing less. But there came a time in my life during the most fulfilling time, that the aches and pains, and complication after complication could not be ignored nor neglected, it came to me while in nursing school. By then I had been long since married and divorced, and remarried, and divorced again. As an adult I had what I call itchy feet, I was addicted to traveling, Was in several car accidents of which I was not driving, except for 1. I had to drop out of school on and off because of theses traumatic events and then some, and I still have not fully recovered. But now I am in such a better place and am learning how to live happily, not just surviving.
The day I was diagnosed I had been to PCP several times, eventually I begged for to be referred out to a Rheumatologist. But he kept running tests on me and kept saying it was in my head. I explained that for year I thought the same thing, but now I can’t ignore it anymore. I was in the midst of a happy career in the medical field and felt like my body was betraying me, I kept exercising, working lots of hours, trying to keep up with my family (I had several miscarriages so not a family of my own, but with my grandparent, parents, and brothers declining health, and getting to know my cousins and uncles better, and marinating friendships, and relationships, trying to be a good aunt to my nieces and nephew, and being that perfect wife), but my PCP kept referring me to other specialist, and finding other things that were wrong, eventually he put all the pieces together and admitted that he was wrong, it wasn’t just in my head, so he finally after 6 years and me staying in one place that long, sent me to a Rheumatologist. The Rheumatologist after reviewing my medical history, and family history, and doing initial exam, took blood, and then sent me in for a full body bone scan. He was patient, and somewhat informative, he said that there are over 1,000 tests and conditions associated with what he suspects “Undifferentiated Spondylitis”. After the bone scan, I got a call that I needed to come back right away. He said that I was zero negative, HLA-B27 positive, and my bone scans show inflammation in just about every joint in my body especially my SI Joints… I had no idea what that meant, as I listened I heard the word Arthritis, Uvitis, Lupus (which I heard before, and thought what is what I had), and the list went on…. My jaw dropped to the floor, I couldn’t think of anything to ask, and hew wrote me a bunch of prescriptions, did some tests some were painful in places that I didn’t realize I had pain before, I kept quite and my mind went blank, I couldn’t even remember how to take my meds, I was in a fog, all I really remember was, the words suspected trigger, rare for women, aggressive, and severe, fusion, calcification, nerves, muscles, bones, heart, eyes, the different parts of my body being names off, and me visualizing each part as I had learned in school. I left down the hall, said good by, and remember nurses and my doc saying we will tackle this problem one at a time, and a firm handshake and have a nice day. I don’t remember driving home, I don’t remember much for about 2 weeks accept going to work, and figuring out what to take and when.
I didn’t tell any one for a very long time, and got on the internet and accessed every health journal out there, I became consumed with desperation in finding answers and any possible cure. I went through just about every treatment and medication, traditional and non traditional, turned down pain meds, for fear of addiction that runs in my family, I kept getting sick and sicker and eventually was ordered to quit my career and file for disability, I didn’t want to do that, I didn’t want to throw away my career that I work so hard and invested time and money in, at that point my x and friends abandoned me, and again my own family and would not give me space or time to cope. So I moved on, I shut every one out, I couldn’t handle their drama. My doc said I had 5-10 years of quality life left, and explained why, he asked me if I had told any one, and I said just my x and things started to spiral out of control. My doc urged me to quit my job as it was causing more damage, and had to start a low level type of chemo and that I could not be around sick people, so I took a lesser job at a photography studio part time, and found I could not support myself and pay all the regular bills and medical bills, and physically bear it, I asked for help and didn’t get any from my family, they had their own problems, did not understand, and was not in the position to help me, I felt like such a burden to every one, so I started working another job as a temp in the medical field, but I kept getting sick, so I resigned to working at a central dispatch station for EMS and monitoring alarms for local and federal enforcement agencies, and freelanced in photography for local and national publications, and took some refresher courses in digital photography and design, and stayed as busy as possible. But as it continued to progress even with treatment after treatment, I adjusted to a brutal divorce in the process and won but then he disappeared and later decided to drop it, I had more important things to worry and take care of, then I was forced to quit my job due to illness after my employer put out a form that they were shopping for new health insurance and it was mandatory to list our medical conditions and medications for the assessments, after I passed a review with flying colors and got a nice raise, I lost my insurance and kept getting sick, I made a lot of new friends that treated me like a normal person, but did not understand the full scope of what I was going thru, I didn’t expect it to go down hill so fast, I would not wish knowing what it was like myself let alone my worst enemy to know. My new relationships were forming on rocky grounds with every one in my life again, which added more stress and pain, fear of being totally alone and misunderstood. So after doing lots of research and finding that the winters were getting harder and harder where I lived, and just when my photography business was taking flight, my body just shut down, fight and flight mode kicked in again. I met and fell in love with my room mate Jeremy, and we had have our ups and downs, he and his family literally saved my life. We found ourselves in the midst of investing in a house together, with a plan to move to California 2 to 4 years later, I thought I had more time and could bear the weather there, extreme heat and extreme cold, but treatment after treatment kept failing, and then Jeremy lost his job to no fault of his own. Then I found Spondylitis Association of America online, at the time I kept telling myself, wow the info is sugar coated, so I joined and there it was page after page, all the complications and associations. I found the forums, and resources, and clinical trials and study. Since Jeremy lost his job and we were 2 weeks away from closing on our house and had already pulled out our saving for it, and my insurance stopped, we decided to move to California, we would be in transition for almost 4 months, practically homeless. In the middle of the move I kept getting worse, and then as I came back to Oklahoma to get the other half of our things, my mom was diagnosed with cancer late stage 3, my heart dropped and was crushed, she was my best friend not just my mom. She told me to go, don’t stay, get treatment, winter was coming and you will not survive it, and on the day I was finishing up moving out of my apartment and scheduled to leave, I got a call from a good friend’s girlfriend freaking out that my friend was attempting suicide and no one could find him. Then I got a text from him, Jeremy and I searched and blanketed the city to try to track him down, we ran out of time and did what we could, our flight was to leave was just a couple of hours away. So moving here was probably the hardest and most painful thing I had to do in ever sense. But with the help of Jeremy’s family, our savings, and my old friends here, we finally got settled, my mom passed away when we were there visiting almost a year later, I talked to her every day, I kept in contact with her doctors constantly. So, not only was I having to deal with everything in the past, but AS on top of it and more complications and drama in my own house.
I kept trying to be positive and fought for 2 years for disability, SSI, SSD, IHHC, General Relief. I found Dr. Weisman during the move, so I went to Cedars Sinai Medical Research Center in Beverly Hills, I did not expect anything from him, I just wanted to help with research by entering the study. But to my surprise, he was patient and caring, I was more than just a number and a statistic, he said that I needed to be on treatment, I had been off it for several months due to the cost and loss of insurance. He said I needed to be persistent and proactive in my care, that I needed to fight harder even tho there is no cure yet, that we could possibly slow it down, and that I would be more comfortable and at least have a quality life while I still could, and in return he would as well and treat me at no cost except for the meds that he could not provide that their pharmacy did not have or could administer, but he would do everything in his power to help me with my case, that I could not keep going on without treatment for much longer. You see, he had an arthritis clinic within a medical group called Venice Family Clinic, that I believe his family founded, because their name is on one of the buildings that I went to. It was the first and largest free clinic in the US, over 20,000 patients with a volunteer staff and students of 2,000. Oh my god, was I dreaming? I kept thinking, how could this be, I have hope again, It wasn’t easy by any means, but I had hope again, he monitored and refilled my scripts that my doc in OK agreed to renew until I got established with a new doctor, It cost around $500 a month just for the medicine, $10 to $50 donation for every visit, plus the higher rate of living here. But it made a huge difference moving here, it was warmer but not too hot, it never stormed, the seasons didn’t change that much, I found peace again at the beach, I felt free, not judged, I started working on a list of things I wanted to do while I could as I was able, as my health declined, I have never been so dependent and unsure about anything in my entire life, my seizures got worse I developed psoriasis, and pain kept getting worse, but for the most part I was happy and willful. But when my mom moved on it crushed me, and at the same time when I returned home my relationship became destructive. I became more isolated because of the pain and could not drive any more. Even tho I could get around on the public transportation, it was expensive, and uncomfortable, a few times I feared for my life on the way home and to Dr. Appointments, and to try to see friends. Also about a year after our move to CA, our room mate Jeremy’s brother, was in need of room mates when his lease was up, and offered to help us move and make our situation better for all of us, we moved out of my friends house so Jeremy could be closer to his jobs, and we would have more privacy and escape the drama within that house at the time, but the economy got worse and ended up not being able to work both his part time jobs, so his family pitched in. His brother fell in love with my best friend Lisa, he was hardly ever there, and ended up moving in with her, so we were left to find a room mate so that his brother would not have to keep paying for a place that he hardly lived in. Any who it wasn’t easy, and it’s another big long story.
So with the help of my boyfriends family, and him trying to find a job here in this economy, and help from my old friend Edgar, and resources of my own, We barely made it by, I won my case after being denied 2 times, the moment I made it to an ALJ judge, and obtained a lawyer, the judge did something that was unheard of, he had no professional witnesses there to dispute my case, as soon as I walked into that court room, he immediately said I normally don’t do this but I’m going to approve your case, I couldn’t believe my ears, I thought he said he wasn’t going to approve my case. He said that he had never gotten so much concrete evidence from so many doctors and personal statements before, he wished me luck, and I fought back the tears, and asked for permission to say something, I thanked him and gave him a quick hug. I thought on my way out and asked my lawyer, wow did that just happen, did I really win? and she said with a smile yes, but we have to wait for his final statement and decision to be put through the system, then it would take months to see the first monthly payment, and more months to get health coverage, and then even longer to get back pay. So things started looking up, and foud out that along the way SS lost my back pay, had the wrong address for me, gave me the run around for months, in the mean time I lost my GR because I was approved, And had to be taken on treatment due to more complications, and found out that during my initial application process SS decided to take the advice of the wrong type of doctors that lead to my case being turned down twice.
Skipping a few months later, Jeremy got a call from a company that he applied too almost 2 years later, that he tested in with flying colors and was placed at the top of list, and killed his interviews in a good way. We worked on trying to patch things up, I went to see my wizard and I started seeing positive results from the judge’s decision. Just in the nick of time Jeremy the hiring freeze ended and Jeremy started his new Job, that would give us an income that we could live off of and start paying off debts. So oh no, I was in the midst of getting use to navigating the system, and we had to move again. I was terrified but found myself being avoided again by my love, and wanted to be more focused on him and supportive. As of now I’m still trying to get settled and just started getting medical benefits again. But with the help of my wizard and more opportunities to look forward to now, I could not be happier.
So don’t give up, get the help you deserve and be persistent, pro active, get a support system in place, listen to your doctors or find better ones, educate yourself, make informed decisions that would be best for you.
When I found my support group in California and online it made all the difference in the world to me, not only did I find people like me, some not as severe and some more severe, I found support for my loved ones that did not understand, made many new friends and have been able to sustain and thrive.
So I leave you with theses words in hopes that it will help others, in the order that I learned them.
“Empower yourself and others”
“Never Stop Learning and Trying”
“Find Strength in your weaknesses”
“Entertain the positive, but accept and acknowledge the negative, and dwell on the positive”
“Stop looking in the rear view mirror”
“Create your universe”
“Take care of yourself and love yourself”
“You have the right to feel the way you do, and you have the right to treat yourself well”
“we are bent not broken”
“forgive every one and everything, let go”
“you are loved, and can love”
HA HA HA one last note…. in my jouney, I have created my own universe, no I’m not crazy, its just a fun way of looking at my journey and moving on, and coping with new issues as they come.
It called AS Mary’s world and you can read about it on my face book page ;D
There you will find lots of photos and my art work.
California United States of America