A.S. Face 2200: Audie

A.S. Face 2200: Audie



“WELL YOU LOOK REALLY MOTIVATED “
Yup that’s what my own family member said to me the other day. I’ll be 60 in January and my own family members don’t get it. I’ve told them numerous times to look up Cookies amazing site , that’s connecting people from all over the world together, read their stories.
Obviously they haven’t. I can’t show you how bent I am. Or that my night stand looks like a crash cart. Or every single step I take I need a cane to walk bc unrelated bone cancer got ahold of me. I have a 2 inch shoe lift on my right shoe bc the bone cancer actually ate away my hip joint. A clip holds it together with my femur bone.
All it took was a damn X-ray to confirm the cancer. But I got passed around, dr to dr. Finally one had brains enough to take a simple X-ray. If caught earlier I would only have a slight limp. And I wouldn’t have to pay over $300.00 for the ONE pair of shoes I have. Can’t afford another pair and insurance doesn’t cover it.
Or that I got a new knee less than a year ago.
All these years going to different doctors and NONE of them believing me.
All those symptoms boiled down to Juvenile , rheumatoid, osteoporosis , AS/UC and bone cancer. And what ever else I can’t think of. Hospitalized numerous times for a variety of reasons not even listed.
This is what I was told by ALL those doctors years ago….
“Your too young to have pain.
You don’t look sick.
It must be stress.
Oh honey we all get backaches
You need to see a psychiatrist.
Must be your hormones.
Are you seeking narcotics ?”

I could add a bunch more but even as I’m texting this , I’m getting ticked off.
I can trace my AS back to when I was 4 years old. Drs at that time said I had juvenile arthritis.
I’ve lost friendships. Love. Jobs. I can’t support myself. In and out of hospitals for years means I don’t qualify for disability. Life looks pretty damn bleak the older I get.
And yes that IS my rbf in my picture (resting bitch face).
At least I have ALL of you and I’m sorry for being a debbie downer bc I look for inspiration in all YOUR stories.
Most scary for me is when AS slams me hard. I can’t walk and it’s affected my aorta. I feel like a ticking depressed time bomb.
A person can take only sooo much of daily chronic pain.
No today’s not a bad day, it’s my usual everyday, when things are going well.
Listening to rock and roll is my ONLY medicine. Allergic to all the medicine “that’s supposed to help me “.
I tried really hard to save up and see Dan Reynolds in MN when he had a concert there. How the hell would I be able to stand for even 5 minutes ?
Or see thru the thousands of people? Never got to see him or any other musical artist.
Music heals the soul. That’s all I have.
I truly feel it will be a blessing when I graduate to heaven.

Wisconsin, United States of America

A.S. Face 1878: Kelly Arend

A.S. Face 1878: Kelly Arend



I was diagnosed on my 40th birthday, back in 2014. I was having severe lower back pain. I went to the Dr, and she told me it was just a pulled muscle. I was put on muscle relaxers, and some pain pills. It went away for a bit. When the pain returned, I went back to the Dr, and was given the same diagnoses. I decide to try a chiropractor. Made a appointment with him. After a few visits, he said to me that he thinks I may have a condition called AS, due to the curvature of my upper back, and the fact that he couldn't get me to stand up straight. So I made a appointment with a Rheumatologist,  and she confirmed the chiropractors diagnoses.  I was put on Humira, then had to change insurance companies,  so had to change meds to Embral. Was allergic to Embral,  and fought to get put back on Humira.  It seems to be working, so far.

I am a dad to two great kids, and try to stay as active as I possibly can....most days that is. I try to not let this beat me down. My only concern is that my 18 year old son, was diagnosed with Bursitis, and his doctor isn't worried about the fact that I have AS.
Wisconsin, United States of America

A.S. Face 1851: Marissa

A.S. Face 1851: Marissa



My name is Marissa I was diagnosed with Ankylosing Spondylitis October 26, 2016

A.S. Face 1752: Ericka Lipka

A.S. Face 1752: Ericka Lipka

Madison, WI

I was diagnosed in 2014 shortly after moving to Wisconsin.  I had known I had a rare disease called Marfan Syndrome for 5 years so many health issues were blamed on that disease. After revealing to my new doctor that my father had AS I was sent in for testing. I was diagnosed with already fused AS and with Psoriatic Arthritis and began a biologic immediately.

I am a newlywed and a proud fur mom to 2 snugly cats and a black German Shepherd.  I am an elementary school teacher in the Madison area. I refuse to let AS, PsA, or Marfan slow me down.

Wisconsin, United States of America

A.S. Face 1716: Mark von Brevern

A.S. Face 1716: Mark von Brevern

Wisconsin, United States of America

A.S. Face 1645: Tiffany ChamberlainPost

A.S. Face 1645: Tiffany ChamberlainPost

A.S. Face 1632: Anna

A.S. Face 1632: Anna

Hi my name is Anna and I’m 31 with AS I’ve been in pain since I was 17 and the doctors kept telling me I had fibromyalgia until couple months ago I finally got sent to a rheumatologist and she did bone scan and said I have AS I’m on methotrexate waiting for it to work. That’s my story.

A.S. Face 1532: Aaron Blum

A.S. Face 1532: Aaron Blum

 

A.S. Face 1530: Melanie

A.S. Face 1530: Melanie

It’s a long story so sit back and relax..lol. My name is Melanie, am 30 years old, and am sick and tired of hearing what an interesting medical case I am. I live with my amazingly supportive boyfriend Tye, 29 and work full time as a registered medical assistant in dermatology. I have been interested in health care from a very young age and started working in the field at age 14. I have an amazing family including my mother, Jennie, brothers, Brandon who is married to Nicole and has 2 daughters Piper and Ripley, Brian, and a sister, Stephani who is engaged to David and has a son, Davey. I’m so blessed to have the family I have. My father passed away last year from a massive heart attack, but prior to that he was also very supportive and concerned about my health since he had psoriasis and migraines.

 I was diagnosed with Ulcerative Colitis at a very young age of 4, but because I was so little I did trials of medications and blood transfusions until the age of 6 when they would allow me to have surgery. So at age 6 I had a total colectomy with an ileostomy then the take down surgery. I’ve had a long history of migraines starting at the age of 12 which I took NSAIDs for the pain. While in high school I had 2 very severe allergic reactions to Ibuprofen and Aleve, and was told never to take Aspirin because of my colectomy. So this meant the only thing I could use was Tylenol for pain control. While in college one morning I woke up with extreme pain in my buttocks with weakness in both legs to the point I couldn’t get up to walk. I called my parents to pick me up and take me to the ER. Doctor appointment after doctor appointment I was told it was just back pain and was given prednisone taper packs for a few months before those stopped working. I ended up failing out of college because I missed so many classes, not being dramatic here, I literally couldn’t walk. I finally saw a Spine doctor who told me for months that I was just a drug seeker because my xrays and MRI were for the most part normal. So at the age of 18 I had to drop out of college, go on disability, and went to physical therapy religiously for 9 months and ended up coming out with more pain than going into therapy with. He after 9 months sent me to a pain clinic where the doctor did SI joint injections and imagine this the pain went away within a day! However after 2 weeks the pain was back and returned to the clinic for another injection. After 3 injections in 6 weeks the doctor told me it was no longer safe to continue with injections and clearly something else had to be going on. I was referred to rheumatology where I was immediately diagnosed with ankylosing spondylitis. Why it took almost a year to diagnosis is unbelievable but I know others have waited longer to get that diagnosis. I started with Humira, then Enbrel however both injections gave me severe site reactions no matter where I injected I would get a bad rash, once it turned into cellulitis. I was then put on Remicade and what a lifesaver! Before starting the remicade I had been trying for a baby and was told because of my health issues and previous surgery it would be hard to do, I was on Clomid for a year with no success and couldn’t afford to continue. In 2010, many health problems occurred. I had multiple pleural effusions, along with a blood clot in my right arm. So again, now on Coumadin (can’t take NSAIDs or ASA), found out I have Factor V Liden (blood clotting disorder) and a Patent Formen Ovalue (PFO). I continued the Remicade with only 1 handful of flares. In 2014, I again had more pleural effusions and it was determined that the Remicade had thrown me into drug induced lupus. So after almost 10 very happy years on Remicade I can no longer be on the TNF inhibitors. I was on Sulfasalazine with absolutely no relief. The only thing I have now is SI joint injections and pain control with pain management. I also have been told I should not try for babies because of all the previous reasons. I have started a campaign with my boyfriend to help raise money to assist in in-vitro with a surrogate for me to fulfill my dream of having a baby. After all the pain of these stupid diseases, it’s no where near as painful as hearing that I can’t have a baby on my own and it’s going to cost $30K. I would love to hear suggestions from what others are trying. I tried multiple diets in the beginning, gluten free, sugar free/low sugar, high protein, etc. Nothing seemed to work. I do love swimming it’s about all I have going for me. Suggestions are welcomed. If you could please share my story along with my campaign I would greatly appreciate any help! Sorry for the long story, but it’s so complicated all I ever hear is how interesting my life has been. www.gofundme.com/o9y790
Melanie

A.S. Face 1462: Jeanette Kowalik

A.S. Face 1462: Jeanette Kowalik

 
My name is Jeanette Kowalik.
I was born in & currently live in Wisconsin.
I was diagnosed with AS in 2008. Before then, the assumption was severe pain via prep sports compounded by motor vehicle accidents. Thankful for the wisdom of my late father Gil, I opted for a second opinion for spinal surgery. The second opinion led to rheumatology for further testing (HLA-B27+).  After a long road of pain (10+ years), I learned that I had AS. As anyone w/ AS knows, there’s no cure or magic pill. Rather, we search for a combination of activities to stall fusing & reduce pain, medications such as biologics, healthy diet & stress management.  Honestly, AS has made me a better person. I don’t take anything for granted. I no longer question why me but I’m thankful to God all around. My whole perspective of life has been enhanced.
Philippians 4:13 & Romans 8:18
Wisconsin, United States of America

A.S. Face 1460: Josilyne Kreisler

A.S. Face 1460: Josilyne Kreisler

Passed away in 2021

A.S. Face 1386: Jeff Shaw

A.S. Face 1386: Jeff Shaw

My name is Jeff Shaw and I was diagnosed with AS in 2008. I started having severe pain in my hips and buttocks in 2001 but the pain would go away. My doctor thought I had AS but couldn’t find a rheumatologist to agree with him. Then in 2008 I had the worst flare of my life. I could hardly walk, turn my head or open my mouth. Pain killers and prednisone would not even touch it. From that point on the pain never went away. I was sent back to a rheumatologist that I had been to before and he looked at my new x-rays and told me that he had to eat crow. I am now on Enbrel and pain killers along with a host of other drugs. I also have Fibromyalgia, osteoarthritis in my knees and degenerative disc disease. I have been on disability since 2012 but still manage to work 2 or 3 half days if I can. Every day is a struggle but I try to keep a positive attitude.

A.S. Face 1372: Brian Johnson

A.S. Face 1372: Brian Johnson

Hi Brian Johnson here. Pretty much the same old story. I have had ankylosing spondylitis since 2005 when I was diagnosed. Symptoms for years before that. I hunt, fish and spend time with my family

A.S. Face 1299: Jen

A.S. Face 1299: Jen

My Story
My name Jen and I am 38 years old and I have A.S.  I was diagnosed in July of 2013.  I have had on and off issues with pain that was progressively getting worse.  I kept thinking it was just me being hard on my body and because I work a physical job.
I dealt with this pain since about 2010.  I had wicked sciatica for the good part of 6 months along with horrible piriformis muscle pain.  I would cry a lot because I didn’t know what was going on with my body.  Some days I couldn’t walk without the help of a cane.  All I could do was lay on a heating pad or bags of ice to find some comfort.  This is difficult to function and do daily tasks and also look after your own children when you are unable to walk without pain.
I went to the doctor so much within this time frame that I thought I was going crazy.  I would have good days and then bad days.  I was given the standard medications of naproxen and some muscle relaxers and was sent on my way.  I continued to have problems.  Went back to the doctor and then came the referral to the pain management.  After a cort injection and no relief, I was referred to a spine surgeon and was x-rayed.  According to the spine surgeon I did have 2 bulging discs, but nothing horrible or would need surgery or even warrant my pain that I am saying I have.  Again, sent on my way, and referred back to pain management for more shots and more narcotics.  This was doing nothing and I was getting small bouts of relief, and continued pain.  Going back to my doctor, physical therapy and neurology doctors, no one was finding anything.  Nothing.  Again, more crying and being upset over what my body was putting me through.  Why do I have this pain?!
I was at a loss.  Finally, after looking up on the internet myself I found a syndrome that described me.  Piriformis Syndrome.  I took this information to my doctor and he agreed and referred me to see a physiatrist for treatment.  This doctor was amazing.  He gave me pain medication and also gave me trigger point injections directly into the pirformis muscle.  Finally, I had some relief, but not for long.  He was puzzled because I kept saying that the sciatica is subsiding and the muscle is now relaxed, however the back of my hip and lower back area was still very painful.  I kept saying “bone pain”.  He asked if I ever had a MRI of my hips.  I said no.  So getting used to this whole referral thing, I went and had my MRI.  I was happy that finally we were maybe getting somewhere with what is happening to my body.
Results – bilateral sacroilitis.
I was shocked as I only had pain on my left side and the MRI read I had inflammation in both sides.  He explained to me that this is seen as a major indication in Ankylosing Spondylits.  I said say that again, and not because I didn’t know what he said, it’s because I knew that disease very well.  My grandmother suffered from A.S.  She was severely hunched over and fused.  We did the HLA test to which I was negative and also a SI injection…WOW…that hurt and I didn’t get relief from it.  So with my new information and the physiatrist knowing there was family history.  Onto my referral to a rheumatologist.
Ironically, I went to the very same clinic as my grandmother had gone to.  I brought my MRI with me and finally met with my rheumatologist.  This appointment lasted for an hour.  He looked at my MRI and listen to my history and said we need to start you on treatment.  You have AS.  I went blank after that.  He listed all the medication I would need to take and what way did I want to go and I was just hearing it but not processing it.  When I walked out of the exam room and into the waiting room, I looked at my Aunt who came with me to watch my children, I just started cry.  Then I called my Mother and told her, and cried some more.
I deal with this still.  Even though I have my wonderful rheumatologist and all my medications, I still go through a lot of pain.  I wouldn’t wish this on anyone.  I have good days and bad days, and those bad days are horrible.  They can last a few days and I can’t do anything, but I still push on.  On days that I can’t, I don’t.  I stay home and rest.  I have learned the hard way if I push too much, I will be worse for a longer period of time.  I attend nursing school full time, work part time.  Two years until I graduate and things might be a little easier with not having my time taken up so much in so many places.  I do worry about the future often, but I take things now day by day.  My children are my main priority and my schooling is second.  I am very thankful for the support with family and friends that I get.  That helps me to get though things.  And laughter.  I make fun of myself so that I don’t become a miserable woman, and just shake my head and say some choice words to my A.S. under my breath.
A.S. put a wrench in my plans, but I am not letting it stop me.
Wisconsin, United States of America

A.S. Face 1273: Amanda Ladecki

A.S. Face 1273: Amanda Ladecki

I am 30 years old, happily married with two beautiful sons. Here is my AS story.
Last January I finally was living out my dream at the age of 29… I was back in college!! I was studying to earn my BS for Social Work. I love helping people and I finally found what my passion (outside my family) was in life. I wanted to help the homeless community and help stop the bad stigmas that are attached to the homeless. I was in my 3rd semester and I noticed my hands were so sore and began to swell. I thought, well I am an “returning adult” student. They say school is harder the older you get but I kept thing “I am not that old am I?” As the semester continued my hands became so much worse I could barely hold a pencil and my knuckles were HUGE!! I made an appointment with my general practitioner once my finals were over. I put the appointment off because I mainly didn’t want to interrupt my schooling and secretly I knew something was very wrong but didn’t want to have to retake the semester. My family does have Rheumatoid Arthritis on both sides so he tested me for it. It came back negative and my X-Ray showed my hand was not broken. He was at a loss. He referred me to a hand specialist who did X-rays again but everything was “fine” but they all seemed concern because my knuckles were 4 times bigger than they should have been. She refers me to a Rheumatologist who diagnoses me with Seronegative RA on my 30th birthday. :/ I kept joking with friends by saying “Well they say your body starts going down hill at 30 but man I didn’t think they meant this bad this fast!” I tried using humor as a way to cope. That was the hardest news I have ever received! A chronic disease with no cure but we should be able to find something to help with the symptoms and pain. How does one wrap their head around this information?? I was very angry and in denial as we kept trying new medicine trying to find something that worked. My insurance company stopping me at every corner saying no matter how bad you are you must fail at a certain brand first before you will be covered for the drugs your doctor believes will actually help. I always felt like I was 8 steps backwards then where I needed to be, and I still do!! After 6 months of dealing with my first Rheumatologist I thought a second opinion is never a bad idea. So in February of 2014 I met with my new and current Rheumatologist who reruns my RA test which magically comes back negative again. No shock there all my tests have been coming back normal since August. She also ran the genetic blood test which has shown a link with AS. She also ordered X-rays of my SI’s. The genetic test came back positive which we know does not confirm anything and my X-rays came back inconclusive so off to a MRI I went. I was only out of the MRI for an hour and a half when the doctors office called with my results. I knew this was bad and I remember my heart sank and I felt helpless waiting for the nurse to tell me the results. My MRI proved I had AS and that I had erosive disease of the right SI and there were mainly concerning holes in my SI from the inflammation. My first reaction was HOLES?!?! That is when I realized what my doctor meant when she told me how AS is compared to or similar to RA. I’ll never forget her explanation AS is like RA excepts it has a worst twist. We started Humira right away and I failed with it. I am now waiting on my insurance to see if they will approve Simponi.
That is my factorial story. Here is what living with AS is like. I cannot do 50% of the little things I used to do daily without an effort or thought process. Examples buttoning ANYTHING, washing in the shower, climbing stairs, easy open containers…false advertisement. Getting on the floor to play with my youngest, playing ball or going on walks or bike rides with my eldest. Holding my husbands hands is very slim to none, Hugging anyone without it hurting, having no problem smiling without having to Russell up energy to do it, and the list goes on with car rides, talking, eating, getting any kind of good sleep, being able to do anything sports related. I cannot live a “normal life” anymore or at least not the normal I used to be. Having to refigure out your whole life to the point of who I really am anymore. I feel like a problem to my family and friends. Trying to figure out what drug I should take due to the many risk factors that can be very severe. I struggle with depression and anxiety on a daily basis and I have officially turned into my own worst enemy because I compare who I am today to the women I knew before the diagnosis.
Like others my story can just keeping going on.
Amanda Ladecki

A.S. Face 1270: Jess

A.S. Face 1270: Jess

My name is Jess. I am a 29 year old mother of one, trying for #2 for 8 months. We sadly, had a miscarriage last month. I was diagnosed with AS 6 years ago. I absolutely hate this disease. I feel as though its taken my smile away.

A.S. Face 1245: Laurie Loomis

A.S. Face 1245: Laurie Loomis

First of all – this group has been so inspiring to me.  I have read almost all of the stories, because before a year ago – I had never heard of Ankylosing Spondylitis. It is amazing to me how far reaching it is – with patients from all around the world on this page.
I am now 50 years old. I have had an official Ankylosing Spondylitis diagnosis for almost one year – but I have had back problems since I was 15.  I was treated for years with muscle relaxants and painkillers, and in the early days I was told to sleep on the floor.
During the last ten years things progressed aggressively.  I had more problems with pain in my lower back, couldn’t get out of chairs, ended up crawling on the floor at home when I couldn’t walk. I ended up with an ulcer because I had taken so much naproxen and ibuprofen. I had a number of cortisone epidurals in my s.i. joints over the years, along with in my shoulders and my hip.  I ended up having back fusion surgery in 2012 – fusing S1-L5.  Nothing healed properly.  I went through a much extended period of physical therapy – and when that didn’t work – they gave me a tens unit – which did help in the short term.  I still wasn’t healing properly – and I had a lot of pain 9 months after surgery.
In March of 2013 (after many absences from work because of back problems), I took advantage of FMLA and decided to find out what was wrong with me. I went back to my surgeon and I had more MRI’s. I went back to my Pain Management doctor as well, and both concluded that I should see a Rheumatologist immediately.  I saw the Rheumatologist within a week.  At first the Rheumatologist claimed that Orthopedic Surgeons and Pain Management doctors usually send their patients to him – when they can’t figure out what is going on.  Essentially, a last ditch effort before the end of the road.  He ordered what seemed to be a million blood tests: Lyme disease, Hepatitis, and Vitamin Levels etc.… It came back with the results that I was shocked by – I carry the HLA-B27 gene. Then he said that I have full-blown Ankylosing Spondylitis.   He also said that I was about 10 years late in my diagnosis and I was extremely inflamed.  The x-rays he took also indicated that I have damage in my feet and in my hands.  He prescribed Methotrexate immediately, and we filled out the paperwork for Remicade infusions with my insurance company. I have been on Remicade infusions every 6 weeks since October 2013.  We are in the process of moving that up to every 4 weeks. I am also on Neurontin, Cymbalta, Metaxalone, Prednisone (only for flares), Percocet (for uncontrollable pain), and still taking Methotrexate, and folic acid to counteract the Methotrexate side effects.  Because I live in Wisconsin- where it is winter with no sun almost 6 months a year– we also found that I had a severe Vitamin D deficiency, which can cause some added pain.  It took a very long time to get that level to normal.
I was able to go on Income Continuation and Long Term Disability last year.  My doctors all agreed that I had to get my health under control, and that going back to work in advertising – was not going to help my physical situation. I think I slept my first two weeks off.  I am working on my Social Security Disability claim – and I finally hired a lawyer to take over my case.
My life has changed enormously.  I was used to going out to all of the concerts and events, staying out late, attending film festivals, and all of museum openings.  Now I am happy to stay up to watch the 10pm news.  I also used to wear high heels every day of my life…because I am 4’9” tall.  I now wear comfortable shoes – and have found that Alegria shoes provide enough support – and they have some funky styles to make up for their sensibility. And I can shop for them online!
I have taken advantage of my time by working on my creative talents.  I’ve taken up knitting, sewing, and painting.  I am attending a therapeutic water aerobics class with a bunch of women who are many years my senior and they can kick my butt! I have attended a yoga class for backs that is taught by a physical therapist.  My favorite physical activity is biking – which sounds strange – but it works.  I can’t walk 5 miles without pain but I can bike 30 miles!  I have a hybrid bike with touring handlebars – and a big cushiony seat.  I can’t wait for my first bike ride this season.
I have to say that my awesome friends and family have come to my rescue many times.  My boyfriend of 6 years is very patient with me and very encouraging.  My friends have been there for me to help with cleaning, and yard work etc. Always with a joke and a smile. My 71-year-old mother shoveled my driveway out this winter and she was able to clean my windows as well.  Mom calls daily to check in on me – and to find out the “scoop”. My sisters have both come forward to help me with different projects – and encouragement. And my 14-year-old nephew has mowed my lawn and helped me with lifting, and even getting out of a chair, when I have been down and out.  I can’t imagine what it would be like not to have a support network.   Other friends check in on me to go out to lunch and shopping.  I haven’t been forgotten – which was my big fear.
My boyfriend and I love to travel. We usually go to Europe every fall on some type of adventure.  Last fall in France, Germany and London – we rented bicycles, and used public transportation to see the sites.  Some mornings we would get a later start out – because I need more rest – other days we come back to the hotel early.  The airlines have been great with letting us board early, and understanding my complications.  I always check in with my doctors before I leave to find out what they want me to do in case of a flare etc.  I have had to learn to pack lightly – and not to carry a large purse (and practical shoes!).  It is just as easy to lie in bed and take a rest in London as it is in Wisconsin – and you get to look out the window and see Big Ben!  What I have found is that being polite and explaining that you have a health problem and you need help goes a long way in any country.

Thanks –
Laurie
Milwaukee, Wisconsin United States of America

A.S. Face 1244: Scott Steele

A.S. Face 1244: Scott Steele

Wisconsin, United States of America

A.S. Face 1170: S. C.

A.S. Face 1170: S. C.

Wisconsin, United States of America

A.S. Face 1137: Tammy Rose

A.S. Face 1137: Tammy Rose

My Story-
I am married and mom to seven children. That is WHO I AM. I’ll get to that in a bit…
Back pain was just as much a part of my life as is my morning coffee. Loose hips (feels like my joints are jello-filled) and shoulders have always been just the way I was built! I’ve always been super flexible and overall healthy so getting finding out I had AS came as a bit of a surprise.
Back/pelvis pain was something that always seemed to really bother me around month 6 or so of each of my pregnancies (5 biological children, one is adopted, and one is an international student we took in from China) but the last pregnancy the pain started slowing me down around 3-4 months in. This pregnancy, the pain seemed much worse and I had very few breaks from it. I figured (as did my OB) it was from the stress of so many prior pregnancies and I wasn’t getting any younger! But unlike in the other pregnancies, the pain didn’t go away after having my daughter- it got even worse.
After much hesitation, I went to see an orthopedist for the back and pelvis pain. He did the usual images and said I had arthritis and a few bulging disks. He suggested a few steroid injects and physical therapy. I was also seeing a chiropractor at the time. I followed through with my ortopods suggestions for PT and steroids but the pain wouldn’t improve but seemed to be getting worse.
My orthopedist did mention surgery was an option but he didn’t feel it was a good one based on my lifestyle (being a busy mom with seven kids at home including a newborn and an 18 month old). I had already had my mind made up that I didn’t want to go down the surgery path because I had seen my own mother, and grandmother, go through dozens of back surgeries with little improvement. I didn’t want to take that journey.
Then after months of trying to cope with the pain I made an appointment with a local rheumatologist seeing as how I knew arthritis was one thing that had shown up. I didn’t go in with much hope but figured I had nothing to lose. She did an assessment of me and one thing that stood out was how there was almost no movement of my rib cage when I would take a full breath. I explained how I’ve had a very tight feeling in chest (can only describe it as a feel like when your back feels like it needs to crack- very tight) for a long time but it didn’t usually bother me too much. She took measurements and checked my joints and measured movement all over my body. She commented on how flexible I was but was concerned by my lack of ability to bend forward. She sent me to the lab with orders for what seemed like every ounce of my blood and said she’d see my in a few weeks once she had the results.
The phone call came from her nurse stating she had the results and I needed to come in to discuss them. Of course I asked if they showed anything and she said, “Well, you tested positive for the HLA-b27 marker”. I was typing it in google before she could even get off the phone and of course Ankylosing Spondylitis came up. Reading thought AS was as if it was written by me… It was ME!
I went to the follow up appointment and my rheumatologist explained AS to me and how she was confident in making that my diagnosis. That was New Year’s Eve…. 14 days ago.
I have spent the past two weeks gathering as much info as I can get my hands on. I am still nursing my daughter (it’s our special time together and that time spent is far more important that taking medications/pain control) so at time I am now planning how I want to move forward from here once I am done. Before getting diagnosed with AS my thing to look forward to after I was to be done nursing was getting new boobs, now I have Embrel to look forward too.