A.S. Face 0033 : Deanna Maxwell

I am still in the learning stages of my disease, I was only diagnosed recently but have been suffering since my early teens.  I have spent a lifetime being told “ that they have done all the tests they can do, and if nothing shows up, then maybe nothing is wrong” and leaving the Doctor’s office in tears. My first surgery on my wrists occurred in 1987, and was described as “releasing a tendon sheath” from extreme tendonitis. There have been 4 more since, and a carpel tunnel release.   I have always loved to draw, as a small child our family moved quite often because my father was in the Military, so I became shy and found it hard to keep having to make friends only to lose them. I could get lost in a drawing…. I could sit and draw for hours, that was my escape, my only outlet and friend.
I first noticed back pain when I was 15, I had x-rays done and was always told that there was nothing there, and everything seems normal. I revisited my back pain several time over the years, to get the same result…nothing wrong.   Between the increasing pain and lack of motion in my right wrist, swelling of my knuckles, and constant chronic lower & mid-back pain, I thought that I was going crazy.  I became depressed and needed pain medication to make it through a day. In 2004, in desperation to find the cause of my lower back pain I saw a gynecologist who gave me the hope of an answer to my pain, he recommended that I have a hysterectomy, and that fibroid tumors were the cause of my pain.
I had 2 children already, so it didn’t sound like a bad idea, if that would take care of my lower back pain for good, I would do anything. So on the Friday before mother’s day 2004, I had a hysterectomy. After taking many months to recover from that procedure, I realized that my back pain was the same.  No change and definitely no improvement.
In 1990 I met and married my husband Steve, he has seen me at my absolute lowest, when I had given up. By 2006 I was officially disabled, but based on my depression, not my many physical symptoms…that no one could put together to form a diagnosis apart from Depression and Fibromyalgia.  I could no longer draw, my hands were deforming at the knuckles, my back pain was so severe that I was on a 50mcg fentanyl patch and a hand full of anti depressants. My days were dreary, I felt that I really must be crazy, how can I still have so much pain even though I am taking so much medication.  That added to my depression.  One day when my husband had gone out, I laid down on the couch for a nap and almost died.   My patch was defective….it released all of the medication, I stopped breathing.   I was in a dream like state, to me it was anyway, and I could hear a voice telling me to “wake up, you’re not breathing, wake up”.   I gasped for air, and then slid back into the fog.  In my state I managed to realize that there was a problem and pulled off the patch while I was laying there.   I never put on another patch, and never will.  I refused all pain medication, and was terrified of the possible chance of overdose ever happening again. I saw pain specialists, had tests done, tried a natural path Doctor and spent thousands of dollars on “hopeful” treatments.  Nothing worked.  My pain increasing and other symptoms were starting, I saw a Doctor in Northern Ontario who told me that I had an L6 vertebra ( an extra vertebra ) and that it was classified as Spina bifita occulta, but it was not a painful disorder. The first time in my life I was told that anything actually showed up on an x-ray, and it was insignificant.
In 2006 my mother passed away at the age of 65 from Cancer.  Widespread, we had 2 weeks notice from diagnosis to death. The stress of that loss amplified my symptoms, the weather, everything was making me hurt, and I noticed that there is an obvious change in my posture, I saw a picture of myself, side view, and it was unmistakable, my back was turning into my grandmother’s, as well as my father’s,  I am developing a hump.  I also noticed a lack of mobility and new pains in my back.  My Doctor sent me to a Rheumatologist and I was diagnosed with Osteopenia, and Fibromyalgia.   Still no diagnosis of AS.   I was talked into going back on to pain medication in 2008, when we moved to British Columbia to help with my ailining father. I had by this time had 5 surgeries on my right wrist, a hysterectomy, and countless cortisone shots in my spine, wrists, knees and hip. I also went through a treatment done to my spine called “Prolotherapy” where I endured several injections into my spine, followed by a chiropractic  manipulations that almost crippled me.
I lost my father in November 2009.   My darkest days were ahead of me. I could barely walk, move or sign my name, and the responsibility of administering my father’s estate fell on my shoulders. I found a Doctor in Qualicum Beach, which is a town about 45 min. drive away, there were no Doctors taking patients in our city of Port Alberni. I guess that was good because my new Doctor actually listened to ALL of my symptoms and sent me to a new Rheumatologist  who took 10 minutes to take my history, take some blood, and give me a diagnosis of Ankylosing Spondylitis. And the start of my recovery I have read many stories similar to mine, and it is heart breaking to see so many people live for so many years with pain and no answers.
If it wasn’t for my Husband and the support of my children I don’t know how I would have made it this far.  Since my diagnosis I have stopped taking strong pain medication and anti depressants, I have started using Flexoril and Naproxen when it gets really bad, and voltaren cream. I am taking vitamin B12 injections, and have started hiking. Slowly, in stages I have brought myself to a place where I can now enjoy life again, and have recently started to draw and paint.
I am taking each day as it comes and learning to live with my limitations, but having an answer and seeing other people like me is encouraging. I had always felt isolated and unsure, defensive of my self and how I felt, I lost so many friends over the years because no one wants to hear someone who is always in pain and complaining, talking about how much pain they are in and not able to focus on anything else. I don’t blame them, but understand their point of view.  I stopped complaining.  It as well wasn’t helping at all.
As of the last few weeks, I am officially an artist again, I have my own web site, and am actually taking commissions for pet portraits.   I am thrilled that I can work again, at something I love. It took over 20 years to get a diagnosis, a lot of damage has been done to my spine and my joints, but now with anti inflammatory medications, and exercise, and family support and education, I am no longer looking at life as what I can’t do, but instead what I can.
Thank-you for letting me vent.  You are the first time I have unloaded my story.   I feel better.  Thanks!   Regards,
Deanna Maxwell
Port Alberni B.C. Canada

8 Responses to “A.S. Face 0033 : Deanna Maxwell”

  1. Dear Deanna,
    First let me thank you for the honor of being the one you shared your story with first, I am humbled and grateful for that. I spent a lifetime keeping my disease and troubles with it invisible as much as I could. Your story touched me and reminded me a lot about myself also. I lost both my parents and lost my ability to oil paint. I’m happy that you feel better, writing for me has been healing. Your work is amazing, and so beautiful.
    Thank you so much.
    Sincerely Cookie

  2. Deanna
    you have inspired me to write my story, when i talked to the rhumy in duncan he figured i was the only female on the island with AS, i would love to get in touch with you
    duncan , bc canada

    • Dear Janet,

      I can’t wait for the honor of adding you to our family.
      Sincerely Cookie

    • Hi Janet, I am so sorry I missed your note. I am now in Victoria and would love to meet up with you sometime! I hope you are finding answers and treatment that helps. I know that is half the battle. Take care, ~Deanna

  3. Thank-you for including my story on your site.
    If it can help one person to know that they aren’t alone, and there is a support group out there, then I am very happy to share my experiences with AS. Hopefully there will be a cure, or attention brought to this disease to help stop the suffering of so many people.

    Deanna Maxwell said this on October 22, 2011 at 2:16 am

  4. I just wanted to make note that in my story I refer to my “Recovery” unfortunately that word is for my emotional recovery, not my physical state. My body is fighting me every step of the way. I was once on so many different medications at one time I didn’t know if my new symptoms were from the medication, or the AS. So I stopped taking them all. It was very hard to do. It felt good having a clear mind to start with, and now I am taking a limited about of medication- Amitryptolene, Naproxen, Flexoril, and occasionally celebrex or mobicox. I use pain medication only when I can’t get through the pain to start my day on my own. I felt that a lot of the heavy courses of medications were turning me into a painful Zombie. With no life.
    Being able to draw again is my therapy, I go slow, it might take me twice to three times as long to draw something, but at least I can still do it, And that gives me hope. I have learned to paint so when my fingers can no longer control a pencil as I need it to , I plan on changing with my disease. I can’t let it take another moment away from me, I’ve lost 20 years, I won’t give AS one more day. Today is mine, and tomorrow will be to.

    My husband said something many years ago that stuck with me through many doctor’s appointments, that were pointless, wastes of time, he said to one doctor …….” I wish I looked as bad on the outside, as I feel on the inside, then you would all know that something IS wrong and look for it!”

    deemaxwell said this on October 22, 2011 at 5:21 pm

  5. You are a woman of great strength Deanna, thank you for the inspiration. Gentle Hugs.

    Cynthia said this on October 23, 2011 at 2:57 pm

  6. Gentle hugs received, and appreciated, then sent back! I find all of you an inspiration.
    I was at the end of my rope….and there were no knots to hang on to….. finding out that I wasn’t crazy, and that there were so many people out there like me gave me strength.
    So many people that have had their lives altered, and some taken away completely, by this disease.
    Doctors can’t relate to us, they can’t understand. Every face here does understand, and lives with it, and has made it to the other side….a diagnosis. No cure, but an answer is what most of us needed. It doesn’t make my pain less, but having so many others understand what AS does to our bodies and minds, helps more than you will ever know.
    Thank- you! And Thank you Cookie for doing this.

    deanna maxwell said this on October 24, 2011 at 12:51 am

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