My Fight Against A.S.

fight like a girl with as

I had a lot of trouble writing this –after all how do you write a story that has no ending.  How do I describe this beast that lives within me and what it has put me through over the years?  I still have no idea but for Cookie and awareness; I’ll do my best.

-2007-

It all started after a family road trip.  I could feel it tightening with every mile but I had a dinner party planned that night and I was determined that if I just kept going the pain would go away.  By the end of the party I knew it wasn’t going to go away.  I cleaned up and apologized to my guests then collapsed to the floor.  I remained there the rest of the night.  At first it was kind of funny that I pulled off this dinner party in all this pain.  Then when it wouldn’t go away the next day or the next day or the day after that….I grew scared.  I didn’t know what this pain was but I knew I couldn’t stay on the floor forever.

Back to Work?

I worked at a doctor’s office inside a local hospital at the time and when I went back in they knew something was very wrong and wanted me to see the orthopedic surgeon that was upstairs.  I went in that afternoon and he immediately asked if I knew what Ankylosing Spondylitis was. Ummmmm-NO.  Say that again?  I couldn’t even pronounce it.

Let the testing began.

I swear I can glow in the dark at this point.  X-rays of things I didn’t even know I had, MRI’s which being claustrophobic I hated, and then bone scans that made my insides glow and blood -more blood was taken from me than should be allowed.  I got so sick!  I just had nothing left in me.  Then I go in to get all these results and I don’t really know how to take it all.  Well Ms Marshall you are HLA-B27 negative –ok…is that good?  Well the rest of your tests tell a different story.  He goes on to tell me that my SI joints and spine are extremely inflamed and we need to get that inflammation under control now.  Multiple disc were bulging and things were pinched everywhere.  I can remember him looking me in the eyes and telling me quite honestly he didn’t know how I was walking at all.  I went back to work and told my office and no one really knew what it was but they all were concerned.

Finding a Rheumatologist

So the next step, I was told, was to find a Rheumatologist. I hadn’t the slightest idea how to go about doing that.  The first one I was sent to was in the adjoining building from the hospital I worked at.  I managed to get in quickly, some perks to working in the field.  I don’t even want to call him a doctor because he doesn’t deserve the title.  This man left me in tears!  He told me that it’s impossible for woman to have AS and I’m doing it to myself that it’s all in my head.  He continued the verbal abuse by telling me if I didn’t get over my childhood that I’d kill myself. REALLY!!!??!!  I wasn’t going to grace him with an answer.  I walked out and never went back.  I sat in my car and cried for some time after that appointment.  I knew he was full of it but I never would expect that some doctor would treat me this way.  I climbed into my shell and refused care for some time till my family convinced me to go back to the Orthopedic Surgeon.  He immediately apologized and sent that doctor a rather lengthy letter.  I then was sent to another Rheumatologist.

Could it be?

She’d spoken with my Orthopedic Surgeon and read my medical record and she was polite.  I was shocked!  She knew I wasn’t opening up for a reason and when I told her what had happened at the last visit she was appalled as well.  She said my test left no doubt and started me on meds immediately.

NSAID’s and Steroids … Oh My!

I felt great for a very short period of time and then I crashed.  I CRASHED HARD!  Steroids are not for me. They helped briefly and left me so sick after.  So then came more meds.  It was like a game of musical chairs.  Whichever made me the least sick and even slightly helped was where we stopped.  It was exhausting but I could walk!  With little luck finding sufficient relief the doc says the inflammation is too far gone to get under control with maintenance meds so she sends me to a pain management facility.

You want to do what?

They get me scheduled for injections directly into my joints.  They say due to my x-rays they need to put me to sleep to do them so they can place them within my joints safely.  I wake up to INSANE pain. They tell me it will ease and I’ll feel better. I go home to my sweet sweet little boy who didn’t understand why momma couldn’t pick him up from school like she’d always done.  He is my miracle.  No med has every made me feel as wonderful as my son.  The doctor was right though, after a few days the pain let up and I felt -dare I say “normal”.  I was able to walk my son to school again and play at the playground.  It was wonderful!

Nothing is Working!

 Then I flared again but the injections weren’t working anymore as my SI joints had fused enough that they couldn’t get the needle into the joint.  Trust me they left me in tears trying to.  Doctor’s did not know what to do for me.  So my husband decided it was time to expand our family before I got any worse.  We found out we were expecting twins but with my body suffering and the list of diagnosis growing I was sent to a high risk obstetrician.  She quickly told us that with twins it would be a very hard pregnancy on me and them.  The twins, Madison and Leo, were already showing signs of stress.  We lost Madison and Leo in an emergency surgery during the Superbowl that year.  It was the worst day of my life.

Depression grabs hold.

Still hurting physically and now emotionally with no solutions in sight left me feeling hopeless.  I began searching for a silver lining.  I needed a silver lining!  I read and researched trying to find a way for this weak tired old body to bring a little angel into this world.  We were pregnant within a month of losing the twins.  I held my breath every time we went in, just waiting to hear that little heartbeat and reassurance from the doctor that our little bun was safe she wanted to come early but the doctors controlled it.  My Rheumatologist was furious but I felt wonderful.  All my pain seemed to disappear over the next 18 months maybe due to my joy alone I had just ignored it.   We had our little girl on December 30th 2008.  She was my second little miracle.

It was like my body was furious with me!

The pain returned when the breastfeeding ended and it returned with a vengeance!  I was put on Enbrel –Fail!  Then Humira – Fail!  Then Remicade –Success!  I finally found something that helped.  Not perfect but close enough for me.  I was able to start back on my exercise routine.  It was all looking quite hopeful.  I felt I could beat this disease.  I soon realized when you fix the main problem though you began feeling all the little ones that you’ve been too distracted to notice.  My hands were killing me and it was getting harder to walk my son to school because my feet were aching.  My Rhumi ordered more Xrays and found severe damage from peripheral arthritis.  Guess what- a new diagnosis of Rheumatoid Arthritis was added to the mix and MORE MEDS.  At this point I was not surprised.

Good News Finally!

Then came the move cross-country that we had been impatiently waiting on for nearly two years.  I started calling around to find a doctor who would transfer my care and continue my current treatment plan.  NO LUCK!  They all wanted to start over from scratch….I could NOT do that!  I went on SAA’s website and was talking to others about how they went about doing this and they recommended I check the patient list of rheumatologist.  That’s when I finally found a doc that understood starting over was not an option.  She agreed to see me right away and I quickly realized she did not know much about AS.  I was faced again with the “you aren’t a man” -gosh I hope not!  We respectfully disagree on many things but she treats me fairly and I appreciate her honest, mostly open mind.

Wild relentless flares!

Anyone who’s moved crossed country knows that it’s not easy and flares are bound to occur.  Sure enough right on que I was feeling that familiar pain return.  I head into a new pain management office and find the doctor that every Spondy dreams of.  She is amazing.  Listens and offers real solutions and sympathy.  It was just what I needed.  She worked up a pain management plan that really helped keep AS at bay.  However, there was this little nagging back pain that just wouldn’t go away.  I stretched it and gently strengthened it but it was still there.  I was sent for yet another round in my arch nemesis, the MRI, only to learn that now my lumbar spine is crumbling from Osteoarthritis at an alarming rate.

Freeze – Don’t Breath – Don’t Move

They don’t know what to do for me but order me to stop all exercise and limit myself to very low impact responsibilities.  Me, still naive, followed doctor’s orders ignoring my screaming body.  The pain sores, without my exercise and stretching routine nothing can help me feel better.  They prescribe a mountain of pain meds with little to no relief.  My kids need a mom who can get out of bed.  This is just not working!  So against the doctor’s orders I start back on my exercise routine.  Sure I might injure myself but I could do that at anytime with AS.  I am cautious at first but yet again I find relief in my routine.  The pain meds and muscle relaxers help me achieve my goals and the pain becomes bearable once more.

The Unthinkable

While on vacation I had an “episode”.  We didn’t know what it was but we knew I was unconscious on the bathroom floor for several hours.  I realized my body was really hurting all over!  My head was killing me.  I don’t know what it would be like to fight a bull but I think I did just that in the bathroom that night!  I gave in and went to urgent care after a week had passed with no relief to find that I have a broken nose, multiple contusions, and a severe concussion.  I need surgery NOW!  No one knew why though.

The Never Ending Concussion!

With my symptoms not letting up after three months I’m sent to a Neurologist.  (Yes that’s right I’m a horrible patient I waited three months.)  They strap me to machines and run more test and that arch nemesis, the MRI, returns yet again.  The MRI shows a brain lesion…the EEG show I’m having seizures.  WHAT THE …

  Freeze – Don’t Breath – Don’t Move –AGAIN

Yes again I was told to stop living!  I couldn’t stay awake long enough to argue.  They wait another three months and repeat all the tests.  Sure enough I now have epilepsy added on to my list and I have to stop all pain medications or my brain might not stop seizing.  Can’t get worse right?  Oh yes it can…remember that brain lesion?  It has the same characteristics as Multiple Sclerosis.  Silver lining- it’s not actively growing so NO additional diagnosis.  I’m told we have to watch it closely but that means no more Remicade as Remicade could have been the reason the brain lesion is there in the first place.

What do you do when you can’t do anything?

I once again ignored doctor’s orders and started my exercise routine back up.  You can take my meds but you can’t take that.  I CAN still do that for myself!  It was an unbearable year.  The pain from stopping all treatment and the time away from exercising left me in excruciating pain.  Slowly though very slowly I began to feel a plateau.  I can breathe even though Costochrondritis has a tight grip.  I can bend and twist even if nominal.  I know I can beat this too.  My neck though, it just won’t turn.  I go back in and they do more test only to find out my neck is starting to fuse.  Well we knew that would happen eventually it’s just happening a little sooner than expected.  Most days I still have great range of motion with it, others I can’t turn my head at all.  I am just appreciating what I have while I have it.  I talk to others that are so much worse off and remind myself to feel grateful.

Too sick to work?

My employer feels I need to slow down.  My medical bills don’t agree but it’s not my decision.  I lose my health insurance but really does it matter?  They can’t treat me with anything because one will affect the other.  My body literally contains its own rock and hard place.  So I pay cash for my seizure meds and my one anti-inflammatory I’m allowed and go on.

Now what?

Now it’s up to me.  This disease has taken my life and thrown it into a blender.  I do still suffer depression now and then but I can’t let my mind go down that path.  This is what it is.  I have it I can’t change it but I can change me.  So I choose to be positive.  I have a lot to be thankful for.  I have two beautiful children that are my whole world.  I have a husband that tries his best to understand.  I have family and friends that support me more than they probably know.  I can fight!  I fight to hold on to my exercise routine in order to maintain range of motion for as long as I can.  I can strengthen my muscles to do the job my spine is growing unable to do.  I can beat this still –just not in the way I imagined.

Impossible to Describe

It’s hard to find a way to describe what I feel daily. It’s impossible to form the words in such a way that someone else, that doesn’t have the beast, could understand but I hope this offers a glimpse into my world.  I now spend my time on meditation instead of medication.  I work to raise awareness wherever I can.  I try to help those that want it and I always try to be there for those that need it.  Most importantly I just try to live a “normal” life.

It’s a mental game for me now. I am stronger than AS!

To share your story go to The Faces of Ankylosing Spondylitis

22 responses to “My Fight Against A.S.

  1. Pingback: When is it more than a backache? | The Spirited Spondy·

  2. Wow! You are my angel in darkness. I can completely relate to your story/ testimony! You just explained what I’ve been searching for, praying for, for a long time but I had no knowledge it existed other than in my faith. You are such an inspiration and I believe you are answered prayer for me. I was about to throw in the towl, not in a since where I would kill myself, but where I would just give up on my will or goal to live a not normal life but a Life worth living. I have been in this nightmare alone for so many years. I haven’t, but just recently found anyone who I can relate to me. Anyone shares A.S. With me until now, and . I am so grateful for this website for God and for you, I can now see him bringing me Into a new season in my life where there is hope and love and healing in this journey of mine. Again! You keep fighting the good fight because your not only beating A.S. for yourself but for others as well and, I don’t know you, but I already love you for it!!!! You have sparked something in me for sure!! ♡

  3. Thank you so much for sharing your story! We definitely have similarities in our journey and I am so impressed by your wheel pose! Full wheel is a long term goal of mine, but after two spinal fusion surgeries (pre-diagnosis), they fused L5S1, so I have no mobility in my sacrum and lower lumbar spine, but I will continue to practice! Yoga is also one of my #1 tools to counteract AS pain, meditation and diet have also helped tremendously. Below, please find a few Facebook support resources, hopefully we can connect there. Also, after reading her story, I felt very compelled to write to Lauren about Maia, to see if she has tried holistic treatments for AS.

    This note is for LAUREN CABANAS: my heart goes out to you for all you and Maia have endured. I have AS and have suffered from AS since early childhood, undiagnosed. I was a very sick child, my mom miscarried my twin and when I was born, I was born with severe chronic health, and spent a childhood on antibiotics for a congenital kidney defect. I have had the same exact AS pain in my sacrum/SI joint since I was a small child and was only just diagnosed at age 38 three years ago. I know how scared and frustrated you must be, and if the drugs aren’t working, holistic alternatives may be able to make Maia more comfortable aside from just drugs. One I would recommend is a specific diet to treat AS and support the immune system. I hope you will please research the No Starch Diet for Ankylosing Spondylitis for your daughter. Also you can google “Ankylosing Spondylitis & Klebsiella”. If you go to http://kickas.orgyou will find information and research from a London based Rheumatologist who treats AS patients, Dr. Ebringer, who found that the overgrowth of the intestinal bacterial called Klebsiella is directly tied to AS symptoms. His clinical research shows that removing starch from AS patients diet will starve the klebsiella of their food source (starch), and affect patient’s symptoms/pain and the disease may retreat. The website has wonderful message boards and you may find support there and possibly others with children battling AS. There is another “diet” movement called Autoimmune Paleo which is to heals all autoimmune disease sufferers put their autoimmune disease into remission following a strict diet. AIP may not work for AS patients, however, due to the starch allowed on AIP. But The Paleo Mom is a leader in this movement and had great resources on her website for understanding the link between our gut, food & autoimmune disease.

    There are several Facebook support groups for the No/Low Starch Diet, AIP, and many people there have completely put their autoimmune disease into full remission through diet alone. Meeting these people on No Starch Diet that are in full remission, sans drugs, has given me great hope! I am very new to the diet personally, but in less than two months removing starch and very clean eating for my health, I was able to stop taking pain meds I relied on for years (I have refused biologics). I also started a Facebook group for those looking to treat AS holistically if you would like to join us. We discuss different dietary approaches, exercise, supplements, and many other ways to treat AS holistically as we all battle this disease. You can find us by searching Facebook: Ankylosing Spondylitis: Hope in Holistic Healing. I will be praying for sweet Maia and everyone here battling AS, and hope we all find relief very soon. Much love, Jules

  4. Thank you for sharing your AS story. My AS journey has brought me to yoga as well. I believe there quiet a few of us 🙂 Sending thoughts and prayers to you and your family for health & happiness. Namaste!

  5. Thanks for sharing your story! I am so excited to read about how exercise has been the one thing that helps…and now meditation. After decades of odd symptoms & doctors telling me I need anxiety meds, I finally found one who put it all together & got me the working diagnosis of “undifferentiated spondyloarthropathy.” I am HLA-B27 positive. That alone convinces many doctors not to totally blow me off when I present with weird symptoms (although I will rarely go to a doctor these days–I can manage with diet, exercise, meditation, sleep, and occasional NSAIDs). Not full-blown AS, but in the same family. As a physical therapist, and the daughter of a man with rheumatoid arthritis whose life has been ruined by prednisone & too many meds, I’m determined to do what I can to control my health. There are the occasional times when I can’t get out of bed, but mostly I am able to do the things I need to do because I am determined to stay physically active & emotionally and spiritually healthy. I find that yoga, volleyball, and tennis are especially helpful because they include lots of spinal rotation. That’s the one thing I’m mostly afraid of losing, so I make sure to include it in my daily activities. Those are only a few of the things I do (I run, cycle, swim–I did a triathlon last year!, hike, kayak, lift weights) to try to keep my body mobile. I feel lucky that it’s not worse, but I also know that could change, so I’m diligent about my physical activity. So far so good, despite a few flareups along the way (one is brewing right now in my feet, but I’m going to keep on keeping on, damn it!). Anyway, I loved your story & am also sorry that you’ve had to endure so much. Good luck in your continuing fight and in your efforts to raise awareness.

  6. What a truly amazing story, thanks for sharing that.

    I am amazed at your strength and perseverance. Willingness to fight, even in the face of Doctors if need be. I wish you the best of what life has to offer and continued success.

    I was diagnosed after living for a few years in pain (not knowing, and being a stubborn male..polite term). When I was diagnosed I was shocked and had no idea what to do, and many Doctors didn’t either. I have fusing in my spine around the ribcage & neck. The blessing is that Enbrel has allowed me to live a fairly normal life again.

    That has me wanting to better myself and getting into shape. There are so many conflicting “ideas” regarding AS & exercise. Some say only light impact, others say get as flexible as possible (physical therapists), and my Rheumy says “anything goes as long as it doesn’t hurt”.

    I don’t know, but I’ve got to do something, and hearing your story (and seeing an impossible pose for me) you have helped me face this head on and just do it. Thank You.

    Dave

    • So happy to hear you are encouraged to move David. I’m hoping to post a whole area on what I do to move and how to do it.

      I’m a stubborn woman (putting it politely) so I understand.

      I’m hope to hear how you are doing moving your A.S. 🙂

  7. I understnd how you feel when I was 23 I tested positive with HLA B27 and with AS. Since then I have seen a specialist for this disease. My father and his father also suffers from it his lower back and neck has progressivly began to fuse together. Most of my pain is in my peripherial joints as well as my neck and inbetween my shoulder blades. Thank you for your story it helps me knowing there are others out there with the same thing as i have. It motivates others to continue fighting and to never give up.

  8. Apologies for the terrible spelling in my previous post… iPads huh! I find yoga is wonderful. I’m blown away by seeing you do a pose like that considering what your body has going on. It inspires me to do more. It’s great that you can do so much after the roller coaster ride you have been on.

    • I actually didn’t start doing any of this till after my diagnosis. I had dabbled in pilates for a couple months once but that’s it. I was determined to get fit in order to give my body the best chance it had. When asked what I would recommend a newly dx’d Spondy to do I always say- start exercising. Everyday no matter how small do something. It took me years to get to that pose and it was WORTH it!

      • How long exactly did it take for you to get the movement in your back allowing you to do that pose? I have been doing yoga now for two years. When i began i couldn’t touch my toes. Now I’m becoming a lot more flexible. It is challenging though. I feel like some days I’m back to square one! I’m nowhere near doing a back bend like that. I can barely do camel pose at the moment. I attend class once a week. I do a daily routine at home to manage my pain. I understand just how difficult it would be to do the pose your doing in that picture. Well done to you. I admire how much effort you have put into helping your body cope with this disease.

  9. That you for sharing your story. It’s crazy how all the meds eventually end up useless rouse further problems that we didn’t originally have. We end up returning to basic things we can do ourselves to manage the illness. Meditation, yoga etc. Is that you doing yoga in the picture?

    • Yes I’m doing yoga in that pic. I do yoga, pilates, cycling, hiking, and lately I’ve added lower impact aerobics. Oh and of course swimming in the summer. My heart started to have issues with inflammation after my daughter so the cardiologist suggested I try more aerobics but thats not easy with A.S. I’m working on it though.

    • It took me four years roughly. I was dx’d in 2007 started moving within months but had to slow down for the pregnancy and this shot was taken July 2011. I find camel harder than wheel but maybe that’s just me. Every time I have to stop it’s work to get back. A.S. does not make it easy on you.

  10. What an amazing story. You are stronger than you know and wiser than you think. You are an inspiration to everyone and I just re-read your story to my husband. Neither one of us are fighting AS, but my beautiful 11 year old Maia is.

    Maia was an IVF baby and I was pregnant with twins and lost one at 11 weeks and 5 days. Maia was perfect, but I was so sick through my whole pregnancy that she came into this world 9 weeks early. BUT, she was healthy… (or so we thought.) At around the age of 2, Maia was sick every month with Strep throat, Ear infections, throat infections etc. She had 3 sets of tubes in her ears and had surgery to remover her adenoids, sinus window surgery and they did a cilia biopsy to rule out any infectious disease. She remained “sick” every month and was on more antibiotic in 3 years that most of adults are on their entire life.

    Then at 5 she stopped getting sick. We were told her immune system was completely comprised,but Maia felt great and we went on with life as nornal!!! Until November 2012. Maia had just turned 11 and she started to complain of ankle and foot pain. My first thought was get to an orthopedic doctor asap! We did… they said “don’t worry”, we see this all of the time. They said she had Severs disease with is related to growing pains, they casted her foot for 8 weeks. She got worse, they re-casted her for a few weeks and then put her in a boot, she got WORSE!!!!!! Then the orthopedic doctor said he knew this was not an orthopedic issue and suggested a Rheumy. WOW… WHAT IS A RHEUMY and what do they do??

    The first Rheumatologist that we went to was the most referred doctor and the “best” of the best. NOT!! He told my daughter it was all in her head, she needed to go to a psychologist and get over herself. Needless to say we never went back. We actually filed a case against him with the Florida Department of Health. The case went all the way to the top of the court system and this week they decided that they weren’t going to punish him at all. (we never had any financial gain in this, we just didn’t want him diagnosing anyone else incorrectly.

    SO… We found a New and Improved Rheumy that we went to in April 2013. (still not diagnosed officially, The new Rheumy ran every blood test imaginable and did MRI’s, x-rays etc. On April 15, 2013 we received her official diagnosis which was “only” AS. Maia’s journey down this long crazy AS road was just beginning. She started on all the “starter” meds and then went on Enbrel. In May 2013. We were with this new Rheumy until October when he finally said, he had hit a brick wall. Maia’s pain level was a 7-10 every day. He said there was nothing he could do but maybe treat her for Fibromyalgia. That’s when I knew, he couldn’t help us anymore.

    Maia starting having flare ups and she was falling and tripping on everything, couldn’t focus and had to stop ALL extra-curricular activities. (competitive cheer from the age of 5, softball from the age of 6, gymnastics/tumbling from the age of 6 and Basketball from the age of 8.) STOP all of it…. I was devastated and just wanted to take this away from here and wished it was me instead of her. We were in Georgia during last summer and we stayed with our cousins. My son was in a baseball tournament and Maia didn’t want to miss it. She fell down some steps and the rheumy said he would call in pain meds, but he could’t help her anymore.

    Well, I posted my frustration on Facebook and I was directed to Dr. Daniel Lovell at Cincinatti Children’s Medical Center Hospital. (We live in FLORIDA.) I was in a panic so I emailed the doctor, requesting an appointment and I attached every medical record from the age of 2. All of her MRI’s and x-rays and all of her medical reports from the past year. I finished the email and “held my breath” 5 days later Dr. Lovell wrote me back and said; ” I will take her case, I have read through all her medical reports and she needs to come to Cincinatti immediately/” So, on December 8, 2013 we left Florida and traveled to Cincinatti. Dr. Lovell and his team were gifts sent from heaven!! They did everything they scheduled every test, MRI etc. The team spent over 4 hours with us alone figuring out how we would work the next 3 days. We stayed at the Ronald McDonald House of greater Cincinatti. I was amazed, hopeful but scared. They came back and formally diagnosed Maia with JIA,(juvenile Idopathic Arthritis, AS, (Ankylosing Spondylitis) Hypermobility syndrome, sinovitis, Enthesis Related Arthritis Rheumatoid Arthritis and Auto Immune deficiency. She was set up for surgery the next day to inject her SI joints and ankles. I was in a complete panic and I knew that she would be put under general anesthesia and they would have to intubate her.

    The surgery took 2 hours. When Maia woke up she was in pain. She said “it was a different pain.”, I was hopeful. The next day we went back to the hospital and met the team again. They spent the entire day with JUST US!!! She was going to stay on all of her regular meds, Sulfasalazine 500mg., 4 pills per day, Celebrex 50mg, 2 times per day, omeprazole 20mg, 1 time a day, and cyclobenzanine 10 mg. 1 time a day. She was to come off the Enbrel injections and go on to Humira injections. The next night before we left, Maia made a snow angel in the snow and we headed home. Maia was scheduled to go back to Cincinatti every 6 months to meet with her team and have surgery. The plan was set, we had new doctors in a new city and were extremely excited.

    On December 11, 2013, ( 1 day after we left Cincinatti) she had her FIRST pain free day in over a year. It was so amazing. But it didn’t last long. 2 weeks after we returned home to Florida, Maia has a horrible flare up and couldn’t walk. We had decided that we had a team of doctors, but they were so far away. They told us to take her to the local ER and we did. They had no clue what to do, had never heard of AS and did nothing. Maia was crying in pain and no one local could help. Dr. Lovell put her on Prednisone 10mg 2 times a day. It is now February 2, 2014 and she has cut the prednisone to 10mg. per day and she is just starting Yoga. (she has been going to PT every week for about a year,)

    Maia’s pain remains at a 3 most days. She is on a 504 plan at school and is allowed to go in the elevator instead of walking (or tripping) on the stairs, her teachers and staff know she is :”sick.” SICK? UNDERSTATEMENT!!!! She is a 6 today. We were lucky to be diagnosed so early. It is a mixed blessing. We know what she has, but we don’t know why she has anything. Everyday is a new challenge and every day it seems we take a step backwards… She has been given a life sentence,,, A life sentence before she is even out of Elementary School. We will have to go back to Cincinatti before the 6 month mark because she is in so much pain. We move forward because we have to. She is the strongest girl I know. She fights her disease like a girl, a strong beautiful girl… Year one down…. Here we go into year two… Is this real life? Thank you for reading her story. She inspires me in ways that I couldn’t even imagine!!!!! Stay tuned…. ❤ Lauren Cabanas, Maia's Mom!!!

  11. Thank you so much for sharing your humbling story! I have been diagnosed with AS for 2 years and am 28. I can feel it getting worse, vertibraes in my spine and neck beginning to fuse. I have been putting off starting infusions, but am about to start them now. Ive had my first seizure last summer. Everyday is an uphill battle, some are better, some are worse and the bad thing is you never know which to expect. I too had a very bad “flare up/ attack” on vacation and got very sick. Thank you so much for sharing your journey. It is so good to know you are not alone/ crazy in the beastly disease of AS.
    God Bless, Niki

    • Your story has so many similarities to mine, some differences but mostly alike. I’m pregnant 2nd child. Off remicade and on prednisone. Feeling good but I know the crash. Thank you for sharing your story. I’m working up the courage to write mine but like you said how to tell a story that doesn’t end?

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