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.
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.
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 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