chronic illness

Autoimmune Survivor

orchidsI am an autoimmune disease survivor. What, you ask? We never hear words like that. Those who had cancer, receive treatment, and enter into remission are called “survivors” of their illness. It’s common to hear people refer to themselves as breast-cancer survivors, etc. Well, I now see myself as an autoimmune survivor. I’m going post about my story here to provide encouragement and ideas for those who also want thrive and survive a chronic disease. They aren’t in a specific order and each strategy is just one facet my path to wellness. My trip wasn’t short or easy, but it worked. There were lots of changes and many coping strategies that helped.

How it Started

On December 21, 2002, I had the mother of all migraines, I hurt everywhere, and I finally realized that something was truly wrong. I could no longer overlook my symptoms and write them off as something I just needed to gut through. My internal medicine specialist decided the symptoms weren’t real and basically told me I was a hypochondriac. One of my symptoms affected my eyes,

cocoons

I often felt pain in all my joints. Do butterflies within their cocoons feel this way before they burst out?

so I saw my ophthalmologist, who immediately understood the severity of my condition. He called my soon-to-be-fired internist and told her what raft of medical tests I needed to narrow my diagnosis. He also recommended that I find a rheumatologist, a specialty I hadn’t heard before, that specializes in treating autoimmune diseases. The aspect of the condition involving my eyes is the third leading cause of blindness in the US and my ophthalmologist became my hero. He not only saved my vision, but he understood my symptoms and didn’t think I was nuts.

As the doctors tried to narrow the diagnosis and ensure correct treatment, I endured endless tests that were expensive, painful, and frightening. They had to be sure it wasn’t muscular sclerosis, for example because it had a totally different treatment and trajectory. My symptoms didn’t fit neatly into a specific flavor of autoimmune disease but matched the syndrome as a whole. My doctor finally asked if I wanted to continue narrowing the diagnosis or start treatment. Once treatment started, it would prevent further diagnosis until I had another relapse. Relapse? What? He kindly explained that I would never get over the disease and that I might periodically go into remission while on the medication and then surge into a period of symptoms in which I’d need even more medication. During one of those surges, we might be able to further refine the diagnosis to a type of autoimmune disease. Top contenders were ankylosing spondylitis and lupus.

butterfly, cocoons

I finally emerged from pain into a new life!

Screw the tests – I quickly opted for treatment. All my joints hurt. My hands/fingers were so painful I couldn’t grip a pen or steering wheel. Pain limited the distance I could walk, and I was so fatigued I couldn’t make an entire circuit of my grocery store. I felt like a basket case and wasn’t thinking too clearly either. Life sucked and I began to wonder what was the point. I had four young children and a full-time job that my family needed me to continue if we wanted to pay the mortgage. What I’d once done without a thought – all the cooking, shopping, laundry, and chores — looked insurmountable.

We eventually found a medication that worked, but the doctor cautioned that it was pretty new. There were few side affects, but the label included warnings that cancer of several critical organs could result in a few years down the road. The tests hadn’t run long enough to make a conclusion. Well, that made me feel better (NOT!).

How it Ended

Fast-forward to July 5, 2007 – my first day without any prescription medication.

I was free of the immune suppressants and the pain medication. I was still in pain, but it wasn’t debilitating any more. I was unwilling to move up to opioids and the lesser prescriptions either didn’t help or caused major headaches, so I ditched all the pain meds and decided I would just have to cope with ibuprofen. Unbelievably, I did fine.

2015

butterfly, orange flowers

I’ve emerged and learned to fly!

Now, I can walk a couple of miles without it becoming too much of an ordeal. My hands and fingers work fine. I don’t need any pain medication except for a bit of ibuprofen when I over-do. I’m over it! I am so much happier and each year I feel healthier than I did the year before.

It was a long journey back to health, and my doctors didn’t understand how I did it. When I tried to explain it, they didn’t understand something so contrary to their ideas of disease and medicine, and I soon stopped trying to explain. I stopped seeing the rheumatologist. Somewhere in the world, there are others who are walking this same path. They’re looking for ideas on how to cope with bodies that suddenly seem to have a mind of their own.

I think much of what I learned can apply to many health issues, not just autoimmune ones. I’m posting a series throughout this next year to help those of you with a chronic illness to take your life back, one bit at a time. If we leave it up to the doctors, we’ll cope, but we’ll end up addicted to pain medication and with unintended side-effects galore. If we want full health, not just getting by, we have to be willing to change our thinking and lifestyle that got us into this mess. We have to honor and take charge of our bodies. We can’t leave everything up to the doctors – it’s up to us.

15 replies »

  1. “I stopped seeing the rheumatologist.”
    SO proud of you for weaning yourself off the system and the meds. I was there once. Health is so much larger than the question of symptoms. And there are many, many ways we can take it back – and along with it, our life.

    Diana

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  2. How awful that you had to endure such a horrible experience. I’m so glad you found your own way to health and life again. It’s scary what can happen to us, so many unexpected and unexplained things. I hear all the time that people who take their health issues into their own hands do very well, and I know it’s worked for me too – though I’ve never gone through anything as frightening or painful as you. I pray you never have to deal with anything like that again.

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    • It wasn’t anything that I ever expected to happen, I have to say. I know you’ve had some significant back issues, and Daisy has had her knee issues. I learned so much about how to deal with my own health when I worked with a holistic veterinarian for my dogs. They teach us in so many ways! Thanks for popping in!

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  3. i’m going through the same thing. the last piece of rebellion/laziness is my diet. i do not like food preparation. it causes me stress and anxiety, and i like junk. i’m trying bit by bit to repair this part of my life. the rest is spiritual. i cycle through anger and isolation, and my body tells me to open my heart and pray! which… makes me mad when i’m in an angry space. 🙂 autoimmune issues are so strange, because it’s definitely genetic. expressions of every form of disease are rampant in my family, but my body feels and works better when i attend to my spirit. thank you for sharing. i look forward to more of your story.

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    • My diet was the last thing I changed significantly, too. There are several different dietary changes available and it took me a long time to see the truth about what I was eating. The good news was that I made so many changes that helped that it was OK to leave that one for last. Like you, I found much of the repair work — most of it– to be spiritual and emotional. It sounds like you’ve done some good work. I look forward to hearing your comments as we go along, to see if what worked for me also worked for you — or not. Thanks for stopping by and letting me know that this issue affects so many people I would not have otherwise thought were touched by this mystical illness.

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  4. Your story is my story! I ditched the medication too although the Drs said I would not be able to live pain-free without them. My fingers work fine now ….and in the midst of the dis-ease; they could not hold anything, were very painful and each joint was so swollen. I never believed the doctor when he said I
    would have to take the drugs (they are used for cancer) indefinitely. I take ibuprofen when I need it. I feel healthy!

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    • I’m so glad to hear I’m not the only one! I’d love to hear your contributions through the series to see if you had tried the same thing successfully or not. Congratulations on regaining your health!

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  5. Wow. What a journey. I’m glad you decided to take your healing into your own hands. We do know our own bodies better than anyone else. (Or we should.) Thanks for sharing your ordeal and your journey to having a healthier body. 🙂

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  6. I’m so sorry you had to go through all of this 😦 I’m happy to know you are feeling better now. The butterflies are a very good representation of the journey. Love the pictures!

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