Minnesota, United States of America
Showing posts with label USA: Minnesota. Show all posts
Showing posts with label USA: Minnesota. 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
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?
Monday, June 17, 2019
A.S. Face 2167: Ann Johnsey
A.S. Face 2167: Ann Johnsey
Greetings! I am 38 and live in MN with my incredible husband and two beautiful children. I’ve suffered from back pain since early teens and discovered I had severe scoliosis at the age of 14. I had spinal surgery for Harrington rod placement at 15. Went in 5’8” and came home 5’10”(although have since lost some height). Throughout my teens and early 20’s I suffered immense pain Dr’s accredited to sciatica, scoliosis, mental illness
and/or being overweight. Not getting answers (or help of any kind) lead to self medicating for many years.
At 30 I began experiencing neuropathy & many unexplainable ailments. I was diagnosed with Fibromyalgia and put on 12 different medications that made me very sick. I knew something wasn’t right and over the course of the next 2 years I saw 6 specialists, gave hundreds of vials of blood and trialed too many meds to count being told I may have Leukemia, MS or Lupus; eventually ruled out. At 34 on my sons 1st birthday I almost lost my eyesight to a horrific bout of iritis that took 6 months to recover from. It was then I received my AS diagnosis after an Ortho took blood work and MRI’s to discover I was HLA-B27 positive and spinal fusion (bamboo spine) had begun. I cried. I was both relieved to have answers and fearful of what my future would look like for myself and my family. It’s now been 4 years (2019). I have a team of Dr’s I see regularly. Some days the pain is unbearable and others I celebrate simply being alive and able to feel and be somewhat “normal”. This disease has taken so much of me as once an extrovert and the life of the party. I now live day to day, as that’s all we can really do with an unpredictable body. I also live with a different kind of appreciation for life. Every day I wake up grateful for all that I have. I choose to be positive where & when I can as it’s easy to get lost in dark places. I am so grateful for this page and others like it. It’s important that we find understanding & support with one another and my hope is that the medical community will have more knowledge and COMPASSION to understand us & this disease better. I pray each and every day for all of you. We are in this fight together. Stay strong my fellow warriors. You are never alone ❤
Ann Johnsey
Oakdale, Minnesota, United States of America
Greetings! I am 38 and live in MN with my incredible husband and two beautiful children. I’ve suffered from back pain since early teens and discovered I had severe scoliosis at the age of 14. I had spinal surgery for Harrington rod placement at 15. Went in 5’8” and came home 5’10”(although have since lost some height). Throughout my teens and early 20’s I suffered immense pain Dr’s accredited to sciatica, scoliosis, mental illness
and/or being overweight. Not getting answers (or help of any kind) lead to self medicating for many years.
At 30 I began experiencing neuropathy & many unexplainable ailments. I was diagnosed with Fibromyalgia and put on 12 different medications that made me very sick. I knew something wasn’t right and over the course of the next 2 years I saw 6 specialists, gave hundreds of vials of blood and trialed too many meds to count being told I may have Leukemia, MS or Lupus; eventually ruled out. At 34 on my sons 1st birthday I almost lost my eyesight to a horrific bout of iritis that took 6 months to recover from. It was then I received my AS diagnosis after an Ortho took blood work and MRI’s to discover I was HLA-B27 positive and spinal fusion (bamboo spine) had begun. I cried. I was both relieved to have answers and fearful of what my future would look like for myself and my family. It’s now been 4 years (2019). I have a team of Dr’s I see regularly. Some days the pain is unbearable and others I celebrate simply being alive and able to feel and be somewhat “normal”. This disease has taken so much of me as once an extrovert and the life of the party. I now live day to day, as that’s all we can really do with an unpredictable body. I also live with a different kind of appreciation for life. Every day I wake up grateful for all that I have. I choose to be positive where & when I can as it’s easy to get lost in dark places. I am so grateful for this page and others like it. It’s important that we find understanding & support with one another and my hope is that the medical community will have more knowledge and COMPASSION to understand us & this disease better. I pray each and every day for all of you. We are in this fight together. Stay strong my fellow warriors. You are never alone ❤
Ann Johnsey
Oakdale, Minnesota, United States of America
Sunday, May 12, 2019
Friday, March 23, 2018
A.S. Face 2060: Carlene
A.S. Face 2060: Carlene
My name is Carlene and I have A.S. I knew I had it my entire life. I am 28 years old. Mother of 3. Wife.
Every day is a struggle, one day at a time and self-love is what I am currently working on.
My name is Carlene and I have A.S. I knew I had it my entire life. I am 28 years old. Mother of 3. Wife.
Every day is a struggle, one day at a time and self-love is what I am currently working on.
Sunday, March 4, 2018
A.S. Face 2046: Ryan
A.S. Face 2046: Ryan
I have had AS for over 16 years I was told but didn’t finally get diagnosed until the year of 2016. It makes my everyday life so much harder especially with my 3 little kids always wanting to go out and play or get on the ground and play too.
I have had AS for over 16 years I was told but didn’t finally get diagnosed until the year of 2016. It makes my everyday life so much harder especially with my 3 little kids always wanting to go out and play or get on the ground and play too.
Tuesday, January 16, 2018
A.S. Face 1946: Becca Richards
A.S. Face 1946: Becca Richards
I have Ankylosing Spondylitis (AS). I had my first symptoms at 17. I saw my first doctor at 18. I was diagnosed at 35. It was my senior year of high school softball and I was a state-ranked pitcher in excellent physical condition. The lower left side of my back started hurting. It was the worst pain I had ever had. This pain would come and go but would never stay away for more than a few months. I told every doctor. I had lot of x-rays. I went to physical therapy. I tried chiropractic, acupuncture, pain killers, muscle relaxers and stretches. I accepted that this was my body and there was nothing I could do to change that. I stayed active most of the time. I learned that if I walked through the pain that it eventually got better. I figured out how to walk so that I looked normal even when it hurt. I became a master at telling everyone that I was fine, when I wasn’t.
Somewhere in my mid-twenties I began having rib and flank pain. It would come and go. I mentioned it to some trainers at my gym thinking it was muscle soreness from intense workouts. I told every doctor. I told my friends and family. I hoped that someone would know how to make it go away. I felt it with every breath. Like an icepick stuck between my ribs. It knocked the wind out of me with even the slightest wrong move. Getting comfortable in bed and staying asleep is impossible. When my lower back or my ribs hurt I don’t sleep. I am exhausted but wake up constantly because every movement hurts. I finally get tired enough that I sleep through the night, but I wake up with so much pain and stiffness that the sleep almost wasn’t worth it.
I convinced myself that I was just always going to be in pain. I wondered if everyone’s body feels like this as they get older. I thought I was crazy. I thought I was a hypochondriac. I thought I was weak. I thought I was a failure. But I never let it stop me. I got really good at pretending to be okay. I got Oscar-worthy good at pretending to be okay. Some days it took all of my energy to put on this show.
I joined a softball team this past spring. I hadn’t played in a few years and my shoulder started to hurt after a few weeks. I had a physical with my Primary Care Physician a few months later and mentioned this to her along with a whole list of problems that I was having. Presenting her with this list was difficult. I felt crazy. I felt like a hypochondriac. I felt weak. I felt like a failure. She sent me to physical therapy for my shoulder where I met Tammy, the woman who changed everything. During one of my appointments, Tammy heard me gasp while moving my shoulder. When I told her it hurt in my ribs, not my shoulder, she started to investigate. She told me I wasn’t crazy. She told me I wasn’t a hypochondriac, or weak or a failure. She told me that something was happening around my ribs that seemed to be making my shoulder hurt and reported this back to my doctor.
My Primary had ordered blood work at my physical and the results showed inflammation markers so I already had an appointment scheduled with Rheumatology that she was able to move up since my rib and flank pain was off the charts. It didn’t take long for my Rheumatologist to diagnose AS.
This diagnosis was the missing piece to my life. Everything suddenly made sense. I was so thankful to know that I wasn’t a crazy, weak, hypochondriac-failure. Then I got mad. I got mad at all of the doctors who didn’t listen to me. I got mad at all of my friends and family who didn’t seem to believe me. I got mad at myself for not pushing harder for answers. I got mad at myself for thinking I was crazy. I was so mad.
I haven’t told many people. Partly because it is so hard to explain (especially since the name sounds like a dinosaur) and partly because I don’t like people’s reactions. I know I don’t look sick so it is hard to understand that my body is attacking itself. I know that I am young and many of my symptoms are “for old people”. I don’t want pity and I don’t want advice about how your grandma deals with her arthritis or how this or that helped your back ache or how you know exactly how I feel since your back hurt once too. I don’t want to feel compelled to convince people that this disease is a big deal and that I will never be cured and that I will probably get worse no matter how much yoga I do or how healthy I eat, and that if I don’t figure out how to get my inflammation under control that my organs will be damaged. Yes. My Organs. My heart in particular. Oh, and by the way, the only medication that has helped lessen my pain has also destroyed my immune system so I am now tethered to my hand sanitizer and I really don’t want to see you when you’re sick. I don’t want to feel minimalized and I don’t want to be upset with people because they don’t do what I want them to do so I just don’t talk about it.
Those are my darker truths that I have only said out loud to one person ever. On the bright side, and I am a bright side person, I am living a normal life. I have a family. I have a full time job. I am active. I basically do what I want. I make some minor accommodations for my body but nothing that takes away from my quality of life or greatly disrupts my family. I am not letting this disease stop me. Most of the time it doesn’t even slow me down.
I am still getting to know who I am with this disease but I know that I eventually I will be an advocate and an educator. I don’t want AS to be unknown. I don’t want people living with chronic pain to feel alone and judged. I have always tried to live my life in a way that is kind and compassionate to others. I hope that by telling my honest story people will realize how deceiving appearances can be. I hope that those who read this will judge less and realize that everyone has a story that they don’t tell. Be kind.
I have Ankylosing Spondylitis (AS). I had my first symptoms at 17. I saw my first doctor at 18. I was diagnosed at 35. It was my senior year of high school softball and I was a state-ranked pitcher in excellent physical condition. The lower left side of my back started hurting. It was the worst pain I had ever had. This pain would come and go but would never stay away for more than a few months. I told every doctor. I had lot of x-rays. I went to physical therapy. I tried chiropractic, acupuncture, pain killers, muscle relaxers and stretches. I accepted that this was my body and there was nothing I could do to change that. I stayed active most of the time. I learned that if I walked through the pain that it eventually got better. I figured out how to walk so that I looked normal even when it hurt. I became a master at telling everyone that I was fine, when I wasn’t.
Somewhere in my mid-twenties I began having rib and flank pain. It would come and go. I mentioned it to some trainers at my gym thinking it was muscle soreness from intense workouts. I told every doctor. I told my friends and family. I hoped that someone would know how to make it go away. I felt it with every breath. Like an icepick stuck between my ribs. It knocked the wind out of me with even the slightest wrong move. Getting comfortable in bed and staying asleep is impossible. When my lower back or my ribs hurt I don’t sleep. I am exhausted but wake up constantly because every movement hurts. I finally get tired enough that I sleep through the night, but I wake up with so much pain and stiffness that the sleep almost wasn’t worth it.
I convinced myself that I was just always going to be in pain. I wondered if everyone’s body feels like this as they get older. I thought I was crazy. I thought I was a hypochondriac. I thought I was weak. I thought I was a failure. But I never let it stop me. I got really good at pretending to be okay. I got Oscar-worthy good at pretending to be okay. Some days it took all of my energy to put on this show.
I joined a softball team this past spring. I hadn’t played in a few years and my shoulder started to hurt after a few weeks. I had a physical with my Primary Care Physician a few months later and mentioned this to her along with a whole list of problems that I was having. Presenting her with this list was difficult. I felt crazy. I felt like a hypochondriac. I felt weak. I felt like a failure. She sent me to physical therapy for my shoulder where I met Tammy, the woman who changed everything. During one of my appointments, Tammy heard me gasp while moving my shoulder. When I told her it hurt in my ribs, not my shoulder, she started to investigate. She told me I wasn’t crazy. She told me I wasn’t a hypochondriac, or weak or a failure. She told me that something was happening around my ribs that seemed to be making my shoulder hurt and reported this back to my doctor.
My Primary had ordered blood work at my physical and the results showed inflammation markers so I already had an appointment scheduled with Rheumatology that she was able to move up since my rib and flank pain was off the charts. It didn’t take long for my Rheumatologist to diagnose AS.
This diagnosis was the missing piece to my life. Everything suddenly made sense. I was so thankful to know that I wasn’t a crazy, weak, hypochondriac-failure. Then I got mad. I got mad at all of the doctors who didn’t listen to me. I got mad at all of my friends and family who didn’t seem to believe me. I got mad at myself for not pushing harder for answers. I got mad at myself for thinking I was crazy. I was so mad.
I haven’t told many people. Partly because it is so hard to explain (especially since the name sounds like a dinosaur) and partly because I don’t like people’s reactions. I know I don’t look sick so it is hard to understand that my body is attacking itself. I know that I am young and many of my symptoms are “for old people”. I don’t want pity and I don’t want advice about how your grandma deals with her arthritis or how this or that helped your back ache or how you know exactly how I feel since your back hurt once too. I don’t want to feel compelled to convince people that this disease is a big deal and that I will never be cured and that I will probably get worse no matter how much yoga I do or how healthy I eat, and that if I don’t figure out how to get my inflammation under control that my organs will be damaged. Yes. My Organs. My heart in particular. Oh, and by the way, the only medication that has helped lessen my pain has also destroyed my immune system so I am now tethered to my hand sanitizer and I really don’t want to see you when you’re sick. I don’t want to feel minimalized and I don’t want to be upset with people because they don’t do what I want them to do so I just don’t talk about it.
Those are my darker truths that I have only said out loud to one person ever. On the bright side, and I am a bright side person, I am living a normal life. I have a family. I have a full time job. I am active. I basically do what I want. I make some minor accommodations for my body but nothing that takes away from my quality of life or greatly disrupts my family. I am not letting this disease stop me. Most of the time it doesn’t even slow me down.
I am still getting to know who I am with this disease but I know that I eventually I will be an advocate and an educator. I don’t want AS to be unknown. I don’t want people living with chronic pain to feel alone and judged. I have always tried to live my life in a way that is kind and compassionate to others. I hope that by telling my honest story people will realize how deceiving appearances can be. I hope that those who read this will judge less and realize that everyone has a story that they don’t tell. Be kind.
Saturday, January 6, 2018
Tuesday, August 2, 2016
A.S. Face 1648: Deb James
A.S. Face 1648: Deb James
I am Deb James. I live in Minnesota. I have had AS since 1976! In addition to AS, I have been diagnosed with Lupus and now Polymalgia Rhurmatica, each different and distinct and makes a body hurt!
Minnesota, United States of America
Monday, January 25, 2016
A.S. Face 1569: Patrick Svoboda Sr.
A.S. Face 1569: Patrick Svoboda Sr.
In 1983 at the age of 19 and married I started having lower back pain. From age 10 up through high school I worked on farms, in factories and everywhere in between. I related my pain with my work history. It became so bad I struggled to get out of bed daily. I went to various doctors, specialists, and chiropractors. They all had their opinions but no real answers. I had my daughter at age 20 and my son at age 21. I still had no answers to what was causing my pain. Three weeks after my son was born my wife left leaving my children and I behind. I had to keep working now more than ever. I remember silently crying myself to sleep countless times. I was sad, frustrated, angry and very afraid. I was hurting and didn’t know where to turn for help. For the next five years I did nothing to find answers to my pain. I simply lived with it. In 1990 I went to see a new chiropractor who suggested a private clinic. The clinic then suggested further testing at a major hospital. At the end of 1990 I had a full body bone scan along with various blood tests. On my 27th birthday I was diagnosed with AS and bone cancer. I just swallowed hard and hoped for the best. I had surgery to rid myself of the cancer. I still had an uphill battle with the AS. By 1992 I was no longer able to work or drive. I struggled to walk and at times was not able to. I was given a walker, wheelchair and hospital bed. My children were now 8 and 7. My fear felt toxic. As the years went by the AS fused my rib cage and chest cavity. I cannot fully expand my lungs thus giving me severe restrictive lung disease. My posture is such that shoulders stick out about 8 inches from the wall. My neck is fully fused. I went from 5’9″ to 5’6″ and weigh 110 lbs. In 2013 I was given new medications that allowed me to walk freely. I no longer rely on medical equipment and do sleep in a regular bed. I am backing doing my large sculptural art and hope to have an exhibit in the coming months. I fully realize the combined struggles of AS and single parenting. It was my children all those years ago giving me the strength to fight and fight hard!! I still have some very rough days but I’m putting one foot in front of the other. I also live with a smile on my face because I get to hear my grandchildren call me Papa.
Minnesota, United States of America
Friday, September 11, 2015
A.S. Face 1549: Marisa M.
A.S. Face 1549: Marisa M.
Diagnosed with AS at age 24. Continues to fight AS each day.
Wednesday, May 13, 2015
A.S. Face 1535: Andrew
A.S. Face 1535: Andrew
Hey guys my names Andrew, my story dates back in 2004 I was in fairly great shape, playing football ect. One night as I slept my lower back just started hurting like crazy. I thought it was just a fling thing, until it started hurting on and off everyday. I went to my parents about the situation, my initial reaction was to quit playing football as I thought that was my problem. The pain went on for about six months on and off or so. I once again told my parents, I believe I need to see a dr something is not right. I was 18 when I saw my first spine specialist at the start of my senior year in high school. I had 3 MRI’s done of my back, none of which showed nothing. The dr basically said continue to be active and see if it helps I graduated high school spring of 2005 everything seemed to be ok, but I was taking Advil for the pain and discomfort. After high school I went into construction before starting college.(bad mistake) not only did I notice a lot of changes, but the pain sometimes would knock the wind out of me. Like a fool I put off going back to the dr and tried to tough it out. That’s when I started to notice a little shrinking in my height. It was a slow progress, but I continued doing things normally. In April of 2008 my life forever changed. I had been experience heavy pain in my right shoulder, so not only did I have my back issue. Also dealing with the shoulder problem as well. Due to pain in both areas, I was taking more amounts of Advil just to make it easier for me to be able to function.
I finally said enough and went into the Dr. The dr did a MRI of my shoulder and found out I had a frozen shoulder. The problem was so bad there was no cartilage left in my shoulder, the only option I had was full shoulder replacement surgery. I mentioned to my dr that I was experiencing severe back pain. They concluded after a series of tests that said I had osteoarthritis. With my surgery, I became the youngest person at the age of only 21 to have a full shoulder replacement, in the state of Minnesota with out any injury to it. When the dr got done performing my surgery, he told my parents my shoulder was so bad that it was nothing but one solid bone where the socket and joint where my shoulder connects. After 15 months of rehab, I assumed everything was ok. The drs however didn’t give me anything for my back pain, and told me to continue to be active. I still noticed my shrinking happening, and more so I noticed that I couldn’t tilt my head back anymore. It was hard for me to turn my neck, and people asked me all the time if I was in a accident or had a bad back. My posture started to become a huge issue as well, where I noticed my flexibility was completely not right anymore. I went to school to work in medical field, it was a great job, but really hard on my body. I moved up north to work at a nursing home was living on my own, still experiencing bad pain, but it was limited to me smoking pot to help the pain and taking Advil and alcohol. I guess I wasn’t in the best of situations. I was at the point where I would do anything to help with the pain, still uncertain of what was causing me this discomfort, even after I was told about me having osteoarthritis, I knew something else was going on. I didn’t waste my time going to the dr and wasting money I didn’t have to spend on dr visits. Then a miracle happen. On July 24th 2014 I threw my back out riding passenger in a low car, that hit the pot hole and bottomed out. I went into the emergency room only to be released 1hour later with a lower lumbar strain. I was out of work for a week, I went back into the dr one week later to have my check up on my back. When the dr noticed a message by the radiologist, stating strong suspicion of Ankylosing Spondylitis. I was in shock because I had never heard of it before. She gave me a packet of what it was, I went home that night to read, much to my surprise everything it was stating about AS; I had experienced. Then the time came to find out finally, officially, if I had AS and finally maybe something could be done about the pain I have been feeling for almost 10 years. On September 14 2014 I was officially diagnosed with Ankylosing Spondylitis. My dr had advised me my hips are really bad, and will need to be replaced in 5-10 years from now. Also advised me I should not work as being a CNA, I resign from my job, and had to move out of my apartment, and move back down to the cities with my parents at 28 years old. To reinvent my career, and also myself. From 2005-2015 I have lost 5 inches off my height from this disease, an my neck is totally fused together with my back on it’s way, I have started humira to help the inflammation. I have noticed a huge difference while using this medication, somedays the pain is good other times are bad. I am off of using Advil, and now only take one pill of naproxen twice a day for pain. Hitting that pot hole saved my life. I’m still learning everyday about AS. I am much more confident in
My self now that I know what’s going on with my body. This is my story.
Friday, July 4, 2014
A.S. Face 1328: Jason Ladd
A.S. Face 1328: Jason Ladd
My name is Jason Ladd. I am in my 40's. I have A.S. I was diagnosed this year in April, although I've had symptoms since I was in my teens/20's. It started with pain in my heels, and progressed to hip pain in my mid 20's. Low back pain in my late 20's. Mid back pain, neck and chest pain in my 30's. And in my late 30's-40 I started getting getting inflammation to such a degree I had difficulty moving around. Some days all I could manage was to get home from work, cook dinner and go to bed. I've had many days throughout my life that I've had trouble walking. My eyes, skin, arm-leg-hand joints are also affected, aside from my axial skeleton. I've been misdiagnosed with everything under the sun. From heart problems, bone spurs, pleurisy, carpel tunnel, degenerative disk disease, herniated disks, osteoarthritis, and allergies. First doctors tried to tell me it was a sports medicine related issue, and that I wasn't stretching right. Then they told me it was ergonomic and I was lazy by not sitting right. Then they sent me to a chiropractor for years, yet it never helped. For years I thought I had heart problems due to chest pains, yet all the tests showed my heart was fine. I also have scoliosis, high blood pressure, psoriasis and obstructive sleep apnea as well as depression. Since I was in my mid 20's there has never been one day that I've not been in constant if not pain, discomfort. Since my 20's I've taken Advil and Tylenol 2-3x a day to even function. I've never had a therapy, or medication help or cure my pain. And I've done everything from exercise, to acupuncture, to diets. For years I felt broken or a freak. People would ask me how I was, and I always would lie and say fine, great, good, because who is going to understand what 24/7 pain is? How do you explain you're broken and nothing will fix you yet you still have to live. I do everything you do but with intense pain, meanwhile behind glassy eyes silently pleading for anyone if not to understand, but to acknowledge it without sympathy, pity, or apology; dreading others attempts to deflect, or tell you how they have pain as well or even better offer advice trying and fix you if you only did such and such.
Just getting a simple diagnosis last April changed my world overnight for the better. I felt like this huge weight lifted off me. I've been amazed at having to educate the medical community about A.S. I was the 2nd person my PT had ever treated. She had to look up online what exercises to give me. I could have saved her the time and copay by telling her myself. I am still floored how many years went by with me being misdiagnosed and doctors never following up or making the connection, or me accepting what they said and not advocating for further help.
Despite all that I try my best to keep plugging along. While I have bad days where I am not able to do much, I have a lot of days, where I can keep going. I have a very high tolerance for pain and not much keeps me down. I am an avid walker; 30-60 min a day all my life, obsessive gardener, cook, artist, writer and a voracious reader. I have a family, a house and a full time job. I am on my 2nd month of weekly Enbrel injections. So far, while I have painful rashy injection site reactions it's a miracle drug. My pain went from a 10 to a 2-to-4 seven days a week. And for at least 4-5 days of the week it completely removes all my inflammation and chronic fatigue and I have range of motion I've not experienced since I was in my 20's. I rarely take pain meds now. Also, my blood pressure dropped by 10 points after the inflammation was lowered. I've only had 2 flair ups since I started taking it. So for me, I feel it's worth the risk. Few people understand my willingness to take it, but after so many years of being in horrific pain I am willing to gamble for a few or more with freedom. Hopefully life will only get better. One of the things this condition has taught me is how important it is to be your own advocate and not give into what others think or believe about you. It's almost impossible to get others to relate or understand the pain this disease causes. So you have to let it go and not worry. You can't let pain define you. It's part of you, but not who you are. You cant help what others think or believe or how they react. Most importantly you have to have compassion for yourself. Being human is hard, being yourself isn't, we are more than pain.
My name is Jason Ladd. I am in my 40's. I have A.S. I was diagnosed this year in April, although I've had symptoms since I was in my teens/20's. It started with pain in my heels, and progressed to hip pain in my mid 20's. Low back pain in my late 20's. Mid back pain, neck and chest pain in my 30's. And in my late 30's-40 I started getting getting inflammation to such a degree I had difficulty moving around. Some days all I could manage was to get home from work, cook dinner and go to bed. I've had many days throughout my life that I've had trouble walking. My eyes, skin, arm-leg-hand joints are also affected, aside from my axial skeleton. I've been misdiagnosed with everything under the sun. From heart problems, bone spurs, pleurisy, carpel tunnel, degenerative disk disease, herniated disks, osteoarthritis, and allergies. First doctors tried to tell me it was a sports medicine related issue, and that I wasn't stretching right. Then they told me it was ergonomic and I was lazy by not sitting right. Then they sent me to a chiropractor for years, yet it never helped. For years I thought I had heart problems due to chest pains, yet all the tests showed my heart was fine. I also have scoliosis, high blood pressure, psoriasis and obstructive sleep apnea as well as depression. Since I was in my mid 20's there has never been one day that I've not been in constant if not pain, discomfort. Since my 20's I've taken Advil and Tylenol 2-3x a day to even function. I've never had a therapy, or medication help or cure my pain. And I've done everything from exercise, to acupuncture, to diets. For years I felt broken or a freak. People would ask me how I was, and I always would lie and say fine, great, good, because who is going to understand what 24/7 pain is? How do you explain you're broken and nothing will fix you yet you still have to live. I do everything you do but with intense pain, meanwhile behind glassy eyes silently pleading for anyone if not to understand, but to acknowledge it without sympathy, pity, or apology; dreading others attempts to deflect, or tell you how they have pain as well or even better offer advice trying and fix you if you only did such and such.
Just getting a simple diagnosis last April changed my world overnight for the better. I felt like this huge weight lifted off me. I've been amazed at having to educate the medical community about A.S. I was the 2nd person my PT had ever treated. She had to look up online what exercises to give me. I could have saved her the time and copay by telling her myself. I am still floored how many years went by with me being misdiagnosed and doctors never following up or making the connection, or me accepting what they said and not advocating for further help.
Despite all that I try my best to keep plugging along. While I have bad days where I am not able to do much, I have a lot of days, where I can keep going. I have a very high tolerance for pain and not much keeps me down. I am an avid walker; 30-60 min a day all my life, obsessive gardener, cook, artist, writer and a voracious reader. I have a family, a house and a full time job. I am on my 2nd month of weekly Enbrel injections. So far, while I have painful rashy injection site reactions it's a miracle drug. My pain went from a 10 to a 2-to-4 seven days a week. And for at least 4-5 days of the week it completely removes all my inflammation and chronic fatigue and I have range of motion I've not experienced since I was in my 20's. I rarely take pain meds now. Also, my blood pressure dropped by 10 points after the inflammation was lowered. I've only had 2 flair ups since I started taking it. So for me, I feel it's worth the risk. Few people understand my willingness to take it, but after so many years of being in horrific pain I am willing to gamble for a few or more with freedom. Hopefully life will only get better. One of the things this condition has taught me is how important it is to be your own advocate and not give into what others think or believe about you. It's almost impossible to get others to relate or understand the pain this disease causes. So you have to let it go and not worry. You can't let pain define you. It's part of you, but not who you are. You cant help what others think or believe or how they react. Most importantly you have to have compassion for yourself. Being human is hard, being yourself isn't, we are more than pain.
Wednesday, June 11, 2014
A.S. Face 1300: Amy Sumner-McCluney
I am Amy Sumner-McCluney, 47 yrs old and I have Ankylosing Spondylitis. I was diagnosed in 2008 after having my first flare. i spent the month in bed, with so much pain, and unbelievably tired. My guess is I was so tired from body fighting the pain. I guess you could say I was lucky getting diagnosed so quickly, but it was because my mother, & brother both have AS and I was able to get into their Rhuemetologist.
Looking back I have always had pain in my back. Also have had pain in my
hips since 14. But I figured that was due to my breaking hip in 3 places and
pulling all the muscles off of butt bone and leg. Let me just say that was not
the most fun I ever had in high school.
Anyways back to present time. I am a wife, mother of 3 wonderful grown
children, and grandmother to 2 of the cutest little girls in the world. Don't
know what I would do without my husband. He has been so supportive through all
of this crap. I am no longer able to work, and don't get me started on doing
any house work. ( Ok I admit it, housework was never on my list of things to
do.)
I think the worst part of having AS for me is that I can no longer do all
the things that I enjoy. Some days you will see me moving around pretty good,
the next I my have a cane or walker. That is the hardest part for people to
understand is that we do have good days where we seem "normal". But then we
have bad day or a flare from Hell as I call them and for me on those days
lifting my foot off the floor to walk is a nightmare. My husband jokes that his
106 yr old Granny walks faster and stands up straighter then me. But people
will just stare at me, friends that don't understand AS will ask what is wrong,
or I have even had people say that I must be faking it, or looking for
attention. The worst part was when some stranger watched me park in Handicap
spot, and waited for me to go into store. She then proceded to yell at me,
saying I was in handicap spot, I told her that yes I was and that I had a card
saying that I am handicap and had right to park there. She then told me that
because I had my 2 yr old grand daughter with me that she didn't believe that I
was, or that I needed to park there. I offered to explain to her about AS,
offered her my Dr's name and number, even asked her to walk with me to get my
meds and talk to Pharmasist . But she said that she had no desire to talk with
me anymore, nor to know about what I have, because it's people like me that rune
it for others. Now I am not usually an angry person, and never raise my voice
to strangers. However I was beyond speechless to be attacked by a stranger, and
in front of grand daughter, and everyone else in ear shot. Alls I can say is I
lost it. I told her that she is a B-itch, and to educate herself before
condemning me, or anyone else. And that it is people like her that make those
of us with "Invisible", little known, not talked about diseases, feel unworthy
of help or support, why we don't complain, or talk about what we are going
through, or asking for help.
Needless to say when I got to counter to get my meds, the pharmasist asked
if I was ok, why crying and shaking. When told him about woman he apologized
that that happened to me, and said I should not have had that happend to me.
That he knows how I have suffered, and doesn't know how I have been able to
what I do.
Since my journey with AS began I have been on Steriods, Enbrel, Humeria,
Remicade, currently on Simponi, Sulfasiazine, Folic Acid and Vicodine. Of
course add to that meds for major depression, Thyroid issues, and high
cholestrol. Some days I feel like all I do is take pills, or get shots.
Thursday, June 5, 2014
A.S. Face 1297: Brian Schroeder
A.S. Face 1297: Brian Schroeder
Hello there…my name is Brian Schroeder. I have been officially diagnosed with as about 2 years ago. I got your email address from the support page on fb. My story is pretty typical of others that I have talked to. I’m 36 years old and have been dealing with back and joint pain for years. Put on various meds etc. tested for lymes, ra, and everything under the sun. It wasn’t till my new Dr said you need to see a rhematologist and then it was confirmed. Tried humera made sicker than heck do now enbrell. It seems to work for a couple of days and then wear off. I’m so tired of being in pain all the time and it causing strain on my family.Minnesota, United States of America
A.S. Face 1290: Rodney Vondrka
A.S. Face 1290: Rodney Vondrka
My name is Rodney Vondrka. I’m from Baudette, mn. I’ve had AS for 29 years as I’ll be turning 56 on the 11 of this month
Minnesota, United States of America
A.S. Face 1276: Bobbi Krusmark
A.S. Face 1276: Bobbi Krusmark
my name is Bobbi Jo Krusmark. I was diagnosed with AS in June of 2010. My lower half of my body swelled up overnight and I spent 2 1/2 weeks in the hospital going through many many blood tests and mris to find out what was going on. In that 2 1/2 weeks I was on 100mg of prednisone as well as many other drugs. I couldn’t move it hurt so bad. Since being diagnosed I have gone from feeling sorry for myself to being very angry and now to realizing that AS doesn’t have me. I have it and I am still going to enjoy my life. It had been a tough struggle but I now enjoy many new hobbies and have been lucky to have the family and friends that I do whom have been there to support and help me. I now am much happier and look forward to meeting many new people and being able to help in any way I can. Thank you for your page and your time.
Minnesota, United States of America
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