My AS Story
My name is Erin McDermott and I am currently 33, living in Oregon and a single mother of an amazing daughter who will soon be 14. I will start my story with what I have gone through medically and end with the effects of AS emotionally and my current standings, as I am considered to be early into the disease.
My story began in 2008 with severe bowel problems that they were sure was chron’s disease but the inflammation found was not severe enough to make the diagnosis although I had all the horrible symptoms. Including the development of 2 fistulas which essentially were two spare holes releasing infection from my bowel. Without the confirmation of Chrons, my primary care Dr. at the time then wrote me off. Since it wasn’t Chron’s disease it had to all be in my head. Although, blood work was still showing something was wrong & severe pain persisted. At my next appointment he told me he would never write another prescription for pain medication & if I asked, he would have me admitted to an in-patient treatment center as I was causing all of my own problems. At the time I was taking only 2 vicoden a day, boy if he could see me now! I actually would love to see him & show him how wrong HE was!! Needless to say, I found another Dr. After over a year they were able to control the bowel problems through meds but I continued to have an aching lower back that started part way through the bowel problems and was only growing worse.
With my bowel under control the gastro Dr. had to refer me to the pain clinic to figure out what was causing the back pain and how to help it. At this time my Aunt, a massage therapist, repeatedly told me it was my SI joints causing the pain. Once I had made it through the psychiatrist who determined I wasn’t nuts and had real pain I had my first appointment. MRI’s & xrays followed showing the beginning of degeneration and inflammation through the lumbar & hips but no note of the SI joints yet. It also showed 2 tumors in my spine, a synovial cyst & Tarlov tumor. The synovial cyst was a result of the inflammation and the other was small & too dangerous to touch and most likely not a source of pain at the time.
While under the care of the Pain Dr., who is amazing, and promised she wouldn’t stop until I felt better, I went through many pain procedures to try to aid the pain. She described it all as peeling an onion, we had to take one step at a time so as not to do anything unnecessary and to ensure we were getting at all the issues as I had multiple.
First we started with physical therapy which never amounted to much work out due to the increase in pain every time we did. So my typical visit was a half hour of massage and a half hour on a TENS unit. Not seeing results she moved forward with steroid injections into both sides of my lumbar from L2-S1. After a couple weeks it was obvious it didn’t work & even that day with my lumbar numb I still had severe pain, in what I would later learn was my SI joints. Next was a de-nervation procedure of the lumbar which burned the nerve endings coming out of the facet joints on each side from L2-S1. This procedure was pure hell!! You are awake to ensure they are zapping the right nerves so first they dig probes around until the hit the nerve, then turn up low level electricity to make muscles thump to confirm further they have the correct nerve, then a bit higher to make the nerves tingle & zing, once all are confirmed they turn it up high enough to burn & you endure hellish pain for the longest 60 seconds of your life! But, not just once, on each side and on each nerve level!! After 4 days in bed recovering from swollen, sore & bruised muscles & two weeks later, once the nerve endings had died, I finally had relief in my lumbar spine from the extreme nerve pain. But I still had persistent pain in my butt & sides of the lumbar area.
After getting through that, the pain in my SI joints was only getting worse by the week & my ability to walk, sit & stand was getting worse & worse. I went back in & we tried the injections twice and de-nervation of the SI joints. Neither did a thing! At this time it was nearing the end of 2010 & my pain was through the roof and my mobility was next to nothing. Finally, she had the discussion about seeing an orthopedic spine surgeon to see if he could help with the SI joints. But, she strongly advised against any surgery as your body can reject the metal 5-10 years later and you are again in a lot of pain. My response was “if I can have 5-10 years of walking & more mobility rather than sitting in a wheel chair now, I am going to do it.” It was a far better outlook that what was in front of me at the time.
In February of 2011 I saw the surgeon and he was the first to mention Ankylosing Spondylitis (AS). Anky-what??? I would shove that diagnosis aside for awhile and not even look to see what it was. He actually looked at a CT scan from years earlier & saw the beginning of bone spurs forming in my SI joints, which after xrays, they were now full of them and causing the pain. He told me with as many that were there and how big they were my SI joints would eventually fuse on their own but the pain would only increase first and it could take another year or more for it to fuse & get better. Oh, hell no!, was my first thought. There was no way I could survive this pain let alone it getting worse for another year or more. So he then talked about fusing the joints and that it would definitely help me but not be a perfect surgery. I would still have flares, if I over did it I would know and I would have limitations but should be able to control the pain far better and walk with MUCH less pain. I was on board right then & there and cried hearing someone could help me!!
Both sides needed fused so I had the worst side done first in April 2011 and returned to work after a 3 month recovery. At that time I had hoped to wait until the following April for my next surgery but a month in I knew I couldn’t wait that long. Having to wait 6months between surgery, I had my second fusion in October of 2011. The surgeries have been a success. Certainly not perfect and still painful at times but the pain in the joints is nothing as it was!
I ignored the words Ankylosing Spondylitis as long as possible but as other areas of my body became effected, I had further symptoms, the surgeon referred me on to a Rheumatologist to talk about it. That night I went home and researched and found with my blood work, symptoms, and bilateral involvement of the SI joints made it a 99% chance of having the disease. As I read about the disease it scared me horribly! In December 2011 I saw the rheumatologist and he said it is likely to be AS but I am in the early stages so for now it is best to work through it with current meds and await what symptoms would follow. My dad had other symptoms such as psoriasis and he anticipated I would see other joints become effected and the onset of psoriasis. And with the only real treatment being the immune suppressants, it was best not to start them yet due to side effects and being so early into the disease.
It is now almost August of 2012 & so much of my body has changed. I have no flexion in my spine other than at the level of my shoulder blades. Bending backwards now only occurs at the shoulder blades. I can not sit for more than 20 minutes due to pain in my butt, standing is limited to about 10 minutes and walking is very painful in the hips and low butt, often causing spasms. I have developed psoriasis & arthritis in my feet. Thankfully, My current primary care Dr. is also amazing. He specializes in internal medicine and has worked very hard to help me with a med plan to keep me off of the immune suppressants. Although the immune suppressant meds can help with pain, inflammation and slow the disease there are so many scary side effects. The one that makes me say no is that it can activate certain cancer cells if they are in your body. My family, both father and mother’s sides, are full of cancer victims and patients and with my child, I can’t take that risk right now. Maybe when she is an adult and on her own I will but now, I can’t risk leaving her too soon to cancer to avoid pain. I’d much rather hurt and watch her grow into an amazing woman, in pain.
After being so tired of Dr’s and treatments, with my pain increasing severely in early June, I have decided it is time to visit the pain Dr. again and see what my options are. My primary care Dr. is certain I have bursitis in my hips and in the bursa sacs on both sitting bones. We hope injections will help with that pain. My lumbar de-nervation is also wearing off so I will hope to schedule the next one too. I also hope to hear of some other options to help relieve the pain in my back and butt. After these procedures, I will continue with med changes with my primary care Dr. as my blood levels are through the roof and showing the anti-inflammatory aren’t working, although they may after the treatments.
Emotionally and physically I am exhausted due to fighting through the pain every day and for so long. Just as it gets a little better, something happens to throw it off & spike. This disease has already taken so much from my life. I have no social life as I can’t sit or stand for long and with working, I spend my time off recovering so I can hopefully make it to work the next day or on Monday. I often miss one or two days a week of work due to the inability to move and currently have until October to be able to return to work full time again or I will be fired. Every day of work is an exhausting struggle, even with working only 6hrs, I leave in miserable pain, nausea and sweating. My life started with working for the State right after high school and I was pregnant at 18. I have worked so hard to excel and get to where I am with work. After 15 years with the State I have been in the job of my dreams for the past 8 years and fear all my hard work will be gone in a flash, thanks to AS. I am sorry for not being the mother I want to be. I want to take my daughter on fun adventures but often can’t sit long enough to drive far enough or walk long enough to have an adventure. Of course as a teen, she loves shopping, but I can’t go for long due to the pain. I rely on my mom to help with cleaning the house and my neighbors mow my yard. Doing laundry will flare my pain for three days. Cooking dinner is painful & no longer any fun. Getting ready every morning is a painful, sweaty process and I have to rest when done to move any further. I must walk to keep from getting too stiff but it hurts so bad. I’m not as stiff after but my back and butt are in spasm, every time. I am single and wonder, why would anyone want to date or love me in this condition? I don’t know that anyone ever will. Good thing I don’t mind being alone! In October I will face either working or applying for disability. At 33, how can I possibly be looking into disability?? Why can an 80yr old blow past me walking down the street? Why can’t I control this pain? Why do some people still think I can control this, or I just want meds, or I can’t possibly hurt that bad, I should be able to work I am only 33. They think it isn’t real or isn’t that bad. I sure wish they were right and I could control it all and live as I used to!! I know not to pray for that as it will never happen but I do pray that those who doubt me will find understanding and compassion rather than disbelief and not care.
Last week I did further research on the progression of AS. I found I am following the path of progression almost to a T. I also found a medical document that said with a SED rate over 30 (mine is 37 & has been for years), loss of spinal mobility within the first few years & bowel disease, it increases my mortality rate.. What does that mean? Feeling so bad now, I can only question how bad this will get. I am angry, scared and at a loss. Thankfully, I have a supporting family and good friends but, I know they tire hearing that I feel like crap every day and I can’t ever say I feel great or am great, cause I am not and I can’t pretend anymore. I also have found support groups on Facebook who’s members help get you through the toughest of days. They all get it, they all really understand and know what you mean and how you really feel with words as simple as “having a horrible day and hurt like heck”. I am fortunate to have a diagnosis earlier than many others. I hope I am in a generation that will be living when they find a healthier treatment or cure. If not, I hope my struggles find a better treatment or cure for the next. AS is a life long disease and not an answer I ever thought I would get for the reason for all of my problems and pain. My fight goes in waves but I must say had I not fought to get here, I would have no diagnosis and may not be alive. It took weeding through many doctors and being persistent that there had to be help out there for me, somewhere or somehow. Without being persistent I would not have a diagnosis & not know where or how to get help.
My message to those who may hear they have AS one day or don’t feel good and know something is wrong, don’t stop fighting for answers. Only we know our bodies & when something is really wrong. Dr’s are human, they can be wrong and they may not know, so move on and find another. You can get help and you can get answers but sometimes we have to fight a lot harder than others to get it. Once you have an answer it may not be a happy one, it’s scary and you will fear the unknown and what the future holds. But life is important and we live once so make the best of every day and do what makes you happy, no matter how small. It’s ok to be down, sad, depressed and cry but, you can’t stay there! You have to bounce back & fight for a better day. Also, with the support groups, you don’t ever have to fight alone. You have many who will support you and see you through!! We fight this together & will always fight for each other and the future!!!
Oregon United States of America