A.S. Face 0752: Shilo Labelle

752: Shilo
 

As you read my story, please remember and honour that my Ankylosing Spondylitis (AS) is just one part of me.

For those of you who do not know what Ankylosing Spondylitis is, please click on the following link. By educating yourself you are breaking down barriers and empowering people.

http://www.arthritis.ca/page.aspx?pid=915

My Story:

At the age of 18 I started to have pain in the right buttocks area, similar to sciatica pain. This was the beginning of my AS journey and my Yoga Journey. At this young age I was living with a friend who was thankfully into Yoga. She lent me a couple of her Yoga books to help me learn some stretches that relieved my buttocks pain. Armed with Yoga and Ibuprofen I had many pain free days.

At the age of 21, I was working the night shift at a Youth Group Home and my right eye started to water, was sensitive to light (couldn’t watch tv) and super painful. I went to my family doctor and was told I had iritis, inflammation of the iris. This was treated with steroid eye drops to bring down the inflammation, dilating eye drops to reduce pain, and an eye cream to put in eye at bedtime. This went away with treatment and I never thought much about it.

I had my first child at 23 years old, and my sciatica/butt pain completely went away during my pregnancy until the last trimester. With about 3 weeks to go until my due date I awoke one morning and couldn’t walk due to the pain. This sciatica pain lasted about a week and was probably due to the positioning and weight of babe.

At 25, my sciatica/buttocks pain continued and I was plagued with another bout of iritis, this time in my left eye. This was a huge red flag for my doctor as it is generally ok to have iritis once, but twice is not good. I was then sent for blood work and tested for everything, and I mean everything, including the gene HLA-B27. I tested positive. I was then referred to a rheumatologist who xrayed my Right hip/back area and found that my right SI joint showed damage. With the iritis, chronic sciatica/buttocks pain and testing positive for the gene HLA-B27, I was told that I have Ankylosing Spondylitis. My rheumy was surprised at how flexible I was and my pain tolerance. I shared that I am a Yogi with a regular home practice and also teach Yoga. My rheumy encouraged me to continue my Yoga practice and healthy lifestyle and sent me on my way.

Thinking back to this time I was pretty jaded and started to arm myself with knowledge of what Ankylosing Spondylitis is. I checked out online forums, online support groups and arthritis sites. What I read was scary (still is) and I felt that my pain was so much less then what other people were going through I didn’t talk or share.

Shortly after my AS diagnosis I woke up one morning and couldn’t walk. My feet hurt so bad they could not bear weight. This was the end of a dream. At this time in my life I was cooking at a vegetarian restaurant and considering going to school to be a chef.

My doctor encouraged me to go back to school as it was no longer in my best interest to work on my feet. I enrolled in a Business Program and upon completing this program at the top of my class I was employed with a non-profit society as a Prevention Educator. From 2007 until 2013, I took on the role as the Executive Director.

Also from 2006 until 2008 I completed my Yoga Teacher Training and received my 500 RYT. This was empowering and gave me so many tools today to help me live with Ankylosing Spondylitis. Yoga is a huge part of my life and I have been teaching for 10 years; well before I received my certification. I am no longer capable of teaching though I hope that I will be able to teach a Yoga class for chronic pain in the future. Until then I will continue with my limited home practice.

Knowing that I have Ankylosing Spondylitis, which is a hereditary autoimmune disease, my husband and I decided to have another child and were blessed with a beautiful baby girl in 2010. If my children test positive for the gene HLA-B27, they have a 15 percent chance of inheriting this horrific disease. I pray every day that this will not be their future.

With the birth of my daughter and having time off away from my profession, I decided that I would like to stay home with my children and started a daycare. I was only able to do this for one year as my AS would not allow for me to be on my feet this much and my iritis plagued me again. To all daycare/care providers of the world you have my respect as this was by far the most physically and emotionally challenging job I have ever had. I am so thankful for the time I was able to be home with my daughter and son.

As life would have it, my position as Executive Director became available and I took this opportunity.

With the diagnosis of AS, it is a life where you have to rely on medication and other alternative treatments. This is very expensive. Though I had a contract with our Health Authority, my family does not have extended medical coverage. To give you an idea of the cost of treatments I have needed, Prednisolone eye drops cost $70 (+), Celebrex cost $100 (+), Physio cost $65 (+) a session. I decided that I need medical coverage. I looked into Blue Cross but found it expensive so I decided to get a new job that provided medical coverage.

This past summer (2012) I had an amazing experience and succeeded in getting my Class 1 Driver’s License. At the beginning of October I am employed as a bus driver with our School District. I was hopeful that this would be a could profession to go into living with AS. Alas, I am now uncertain if this was a good choice. I am currently on Medical EI as I cannot drive bus. I wonder if sitting and driving have aggravated my flare up in my spine or if this would have happened with my office job. I will never know.

From 2007 until now my AS continued to plague me sending me to emergency a couple of times with severe chest pain. A flare up in the chest is the most excruciating pain I have ever experienced in my life. Worse then labour pain. I battle with fatigue and the pain disrupts my sleep. My Right SI Joint is now completely fused and I no longer have pain in this area. I have had Iritis seven (+) times, and this is now a chronic condition.

It is important to note that iritis is not for the vain. Your vanity will take a blow. You have to use drops that dilate your pupil which makes you look like you are under the influence of street drugs. Because of the dilation, you are super sensitive to light and it is odd to see yourself this way. When my Iritis acts up I wear sunglasses everywhere I go, indoors and outdoors. The sunglasses keep my eye hidden and my vanity in check.

To date the biggest struggle I am having now, living with AS is that my thoracic spine has started to fuse. I started to have upper back pain in November 2012, and as of January 2013 I am in excruciating pain and unable to work, among many other daily life activities/chores I cannot do. I am currently in the process of trying to find a pain med that will allow me to live my life the way I want to; all the meds that I have tried only take the edge off. My doctor gave me a trial of high dose oral Prednisolone in hopes that this would control the inflammation in my spine but it didn’t work.

I believe my left SI joint is starting to fuse as well as I now have pain (almost chronic pain if it goes for 3 months) in my left psoas and have to do leg stretches every day.

I didn’t know that AS could be so painful. Having my SI joint fuse was a walk in the park compared to thoracic spine pain. Iritis is my nemesis and since my last flare up of iritis I now take a prevention eye drop of Lotemax every morning in hopes that this will prevent the iritis from returning.

The thoracic spine pain I am living with has only been a short time, but it is so debilitating I am truly experiencing Grief and Loss. There are so many things I cannot do and I am finding that even on days that I barely do anything, this is too much. Not to offend anyone reading this, but I feel that I am trapped inside my body as if I was paralyzed, but still feel all the pain. I am very emotional and find myself crying often.

I am worried about my future as I seem to have true AS symptoms meaning that my spine could fuse. Until my thoracic spine started to hurt I always believed that with eating well, practicing Yoga and taking Ibuprofen when the pain makes me grumpy I would kick AS’s butt. This idea is no longer working and am desperate to find the right treatment to manage my pain.

I recently had another appointment with my rheumatologist as my AS is out of control. We discussed the idea of taking biologics – anti TNF drugs, check out the following link for more info: http://www.rheumatology.org/practice/clinical/patients/medications/anti_tnf.asp

I have been doing extensive online research regarding my current options for pain management. I do not have a lot of faith in pharmaceuticals or western medicine but fear this is a naive statement as I get older and suffer with AS.

I am not 100 percent sold on the TNF drugs and will continue to try alternative therapies until the AS either goes away or breaks me down. The side effects of these drugs are astonishingly horrible. I still need more information before I decide to inject myself or not.

My fear is that I am still young and AS is life long. Do I take the TNF Drugs now while I’m young and able and hope they work so I can get on with my life and hope they continue to work and hope that I won’t get any of the side effects (cancer, stroke, heart attack to name a few); or do I wait until I’m older, the AS has progressed and this is my last resort.

I have met with a legal advocate to educate myself on CPP Disability; time will tell if this is my next move.

My hope is that with my diet changes, NSAIDS and alternative therapies my AS will go into remission. This is my hope.

Live with: Hope Love Forgiveness Truth Faith & Honesty ~ Shilo ~

Meds: Dyclofenac, Oxycodeine

Meds I’ve Tried: Ibuprofen, Celebrex, Prednisolone, Naproxen, Dyclofenac, Oxycodeine

Alternative Treatments: Prayer, Yoga (very limited; mostly Joint Freeing Exercises), Breathing Exercises, Walking, Meditation and Visualization, Positive Affirmations, Physio/Acupuncture/Infra Red, Hot Tub, Heat Pads, Starch Free/Paleo Diet

Vitamins: Vitamin D, Omega 3, Calcium Magnesium, Probiotics, Immune Complex (a blend of echinacea, vitamin C, zinc, vitamin E, astragalus and aronia extract), Oregano Oil if I feel the slight bit off

Want to try: BRAGG Apple Cider Vinegar, Juicing, 21 Day Raw Food Cleanse, Zyflamend, attend a Pain Clinic, Cranial Sacral Therapy, Massage, Tai Chi, Feldenkrais Method, LDN – Low Dose Naltrexone, Medical Marijauna

My Support Team: God, my loving husband Colin, my amazing children Dayne and Draya, my Mom and Dad who pray for me every day, my family, my best girl friends, our friends, my doctor, eye doctor, rheumatologist, opthamologist and my physiotherapist.

Update:

As of Jauary 2013 until March 31st I have been living in hell. My thoracic spine is so painful just to be and don’t even think of touching my spiine. I get shooting pains down my ribs; possbly muscle spasms, that I can barely move once I am sitting or lying in bed. A few weeks ago the pain was so excruciating even after taking my T3’s with codeine, I couldn’t handle the pain anymore so I phoned 911 and had the ambulance come and get me. This may seem extreme but there was no way I could get out of bed because I couldn’t handle one more shooting pain. I either went to the hospital or the other thought that crossed my mind was to have my husband knock me out so I could escape the pain. My husband and I are very much and love and he has and never would lay a finger on me, but I was ready and willing just to be knocked out and not have to hurt. The hospital gave me Oxycodeine and a handful of anitinflammatories and a prescription for Oxycodeine.

I’ve heard horror stories of people getting addicted to the Oxycodeine but I hate it. It makes me super itchy, nauseas and doesn’t take the pain away. It does relax me so I can sleep. I only take it at bedtime

To add to my mysery both hip bones hurt, my ribs ache and now on my left foot the pad below my toes and the toe beside the big one is swollen and I can barely put weight on it. I am definately going through Grief and Loss (mostly guilt and blame and upset with God) I cry often, even as I type this and I am scared of what the next 12 hours will bring, more pain or a glimpse of relief. This is such a mean disease.

The last two weeks of March I have finally been to see an Opthamologist for the first time and my new Rheumatologist for the second time. My Opthamologist took me off the Lotemax which I was taking one drop in my R eye every morning. I am now cursing him because this morning (April Fools Day) I woke up with a killer migraine and Iritis in my R eye. Just when I thought it couldn’t get any worse. My Rheumatologist and I had a talk about the TNF Blockers and I decided that I am going to take Enbrel. She is still waiting for my TB test from the health unit and my Xrays of my SI joint from my GP. I am nervous about taking the Enbrel but I don’t want to live like this. As soon as possible a nurse will come to my home to teach me how to take the Enbrel.

I am continuing to follow a Starch Free Diet, I do Range of Motion Exercises and Meditate almost every day, Hot Tub, baths with Epsom Salts, some walking but not much since my L foot is swollen, and I get Physio with Accupuncture two to three times/month, pray and just try to cope. Each day is different, some days are easy and when I say easy it doesn’t mean the pain goes away, and some days are challenging. The past 12 hours have been challenging.

I just ordered a new blender online and patiently waiting for this to arrive a Raw Cleanse iis my nex step in hopes of pain management. I am glad I have a plan (Enbrel) but am struggling.

Shilo

Canada


7 Responses to “A.S. Face 0752: Shilo Labelle”

  1. Dear Shilo,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

  2. Hi Shilo, keep going! I understand where you are coming from, i also put a lot of my faith in alternative medicine, nothing is a set in stone with this illness and it is a rollercoaster, just know there are people out there going through the exact same changes and feel your pain. Your plan of attack is fantastic and the juice fast should help your pain, I have done two or three in my time and am also looking to do this soon to help reboot the healing / inflammation process.

  3. Hi Shilo!

    I can really relate to your story and timeline. My timeline is very similar. SI Joints fused, my spine is already showing signs of “bamboo spine” according to most recent x-rays, fusions in thoratic section of spine, etc. I’ve got a curved slight hunchback already at 34, just beautiful!

    I lucked out with never having irtis. But went through all the other hellacious AS pains.

    I also lucked out with a raw, low starch diet. Been on it strictly for 18 months, and its been a life saver. I did a few extended juice fasts which really truly helped too.

    I really hope you can find relief!!! I am envious you stuck with the yoga, I used to do it in my early 20’s, but stopped when the pains really set in. I just got too fatigued I think, too easily. Plus not being able to lie flat on a mat, or keep up with the rest of the yoga class was super frustrating.

    Please email me if you ever want to chat, and have a friend with AS!

    xoxo
    Andrea
    http://www.bettyrawker.com

  4. Dear Shilo, Thank you for sharing your AS story. I always get excited when I read a fellow yogi’s story. Plus you’re also a non-profit professional with 2 children. Kindred souls for sure. For what’s it worth, I believe you are doing everything right by leaving no stone un-turned. It’s an insidious disease. If you are anything like me, you will have better years ahead. I also agree that sitting for long periods behind a wheel is the worst. Sending you healthy thoughts & prayers, Rich

  5. The foot pain….only someone with AS understands how BAD it is!!! It is horrible!

  6. Hi Shilo,

    I seen your name and thought I should read your story as my name is also Shiloh. I am a male and also have A.S.
    I have not put my story on here yet but I will soon. I wanted to reply to your story because we both have similar stories with this lovely condition. First of all, I am sorry. I have and am going through the whole thing with work, pain, progressing, emotionally distraught and so on. Just a quick rundown on me. I am 40. I started feeling the same symptoms around 30. I ran my own business as an Real state developer and a Building Contractor.
    I ignored the pain for a while, taking Ibu. I couldn’t take it anymore so I went to a PH and the RX adventure began. I have been on many different pain meds, prednisone and so forth. I finally was diagnosed with A.S. and was like you. I am a tough guy and thought I could beat it. I continued working hard building and selling homes knowing it was detrimental to my health. Throwing in the towel just was not an option to me Shilo. Now that I am 40 “I sure wish I was more aggressive in my outlined treatment program”.
    I wish I did not continue to work in pain as i made it much worse and painful. The damage is done and there is no changing that. I am now on disability and have Medicaid Ins. I was self pay before and ignorant to the fact I had A.S. I never took drugs or pills or nothing as I always had to be in control of my mind.
    My RA Dr has me on HUMIRA. It has not helped with pain but it is slowing down the progression so I stay on it. He also just put me on INDOMETHACIN which is made specifically for A.S. After trying many pain rx I have found works for me the best is the PERCOCET and the FENTANYL patch. The patch actually helps so I can lay in bed and actually sleep in the night. It works 24 hrs a day so I take the PERCOCET through the day and combined I get some relief. I been on the Indomethacin 2 weeks and it is starting to work some, I think. Its a given I wont ever do the work a did before but I am hoping once the meds are figured out I may be able to work from home or something.
    Shilo, I wish I took it more serious and had ins before and most of all, I wish I was more aggressive with treatment before. I hate all the meds but just to have some quality of life again, to as you said, to NOT want to be knocked out and yes, have the desire to want to live in this body. We will never be pain free. Don’t waste time on a drug that don’t work. Try, try, try is what I am now doing and I feel a little better. I see a small light at the end of that tunnel.
    Thanks for your post, takes courage, courage you will have to adjust and fight/beat this!!

    Shiloh Cody

  7. Hi Shilo!
    Your story is stunningly similar to mine, right down to wanting to treat the pain with diet and exercise. I also live in canada! I love this website because I don’t know a single person with this disease (actually no one I know has even heard of this disease). It was really touching to read your story and I hope you are doing well!
    Cheers,
    Anita Percell

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