rainbow base

Licking Autoimmune

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uphill walk
My journey certainly felt like a long, slow walk up-hill with no end in sight, but I was wrong. I finally got better.

I’ve written a few times previously about overcoming my autoimmune disease, and a recent reader asked for more information about how I was able to cope without doctors and medication. I’m sorry to disappoint them, but I couldn’t at first. I was in so much pain and had so much difficulty functioning, that I agreed to the medication. It gave me the strength and time to devise a more successful strategy long-term. That scared me, but I couldn’t function the way things were, and my four children needed me. I needed the medication, but long-term side effects were suspected to include cancer, so I was not eager to take the one medication I found that worked. I took medication full-strength for about two years, and a reduced amount for another two  before stopping it forever. I’ve written previously about ways to cope with a chronic which you can find, here. Now, let’s talk about how I overcame the illness and the medication.

rolling hills in mist
When I first got sick, I had no idea what an autoimmune disease was, why it was so hard to pin down, or why everything hurt.

Getting Educated: I learned as much as I could about my conditions so I was able to partner with my doctor regarding my care and take responsibility for my health, rather than feeling like a victim. That psychological shift was critical to take over my wellness plan. Doctors treat disease, not wellness, but my goal was wellness, not disease. My rheumatologist was certain I’d be on medication for life, but I proved her wrong.  

Spiritual (not religious) Crisis: The doctor told me that my body was fighting myself. Pondering that, I saw how much I hated myself for being sick and incapable. I blamed myself for every mistake I’d ever made. I began a new spiritual path toward self-acceptance. That sounds simple, but it slow and difficult. I had to un-learn many of my beliefs and change my whole philosophy of life; I had to become self-empowered. The biggest blessing was discovering meditation; it helped everything! There’s no proof that the spiritual changes helped me get over my illness, but it sure made me happier and more at peace with my life, which I think counts.

hot tea, cuppa
The medication didn’t deal with everything; it was up to me to figure out what I needed.

Getting Support: The financial reality was that I couldn’t stop working full-time just because I was sick. Being the only cook, maid, and chauffeur though, had to go. My four children and my husband had to shoulder their shares of the burden. Their help made a huge difference and was an important part of my recovery.

In addition to the autoimmune treatment, I addressed major issues with treatment, too. I got a nebulizer to ease my raging asthma. I used a cane for a year to help me walk with persistent knee pain. I began seeing a chiropractor. I reduced my allergies with immunotherapy (allergy shots). I’ve written previously about using resources here. I also got a cat that loved to cuddle, because that kind of emotional support works for me.

snow in summer
Just like this hill has snow, even in summer, I had pain, even on the medication. It was a constant companion.

Approaching Pain Differently:  The non-narcotic pain medication began causing constant headaches. I refused offers of narcotics, which was smart in retrospect. When I stopped the pain medication, the increase in pain I’d expected didn’t materialize. That medication had apparently been ineffective for a while. When I stopped fearing the pain and accepted it, it lost its power over me. I hurt, but walked anyway. The pain and fatigue didn’t stop, but neither did I. I stopped trying to eliminate pain and instead worked to manage and reduce it where I could –and  accept it where I couldn’t. One day I discovered Reiki, a type of energy work. It could reduce my pain for a few hours, and I was grateful. I learned Reiki, too, so that I could use it on myself.

alpine flowers
Although I felt delicate like these alpine flowers, I discovered that I was strong enough to make it through.

Food as Medicine: A vegetarian for several years when I first got sick, I didn’t think it contributed to my condition. Then I read that my type of autoimmune symptoms were often related to a lack of protein. So, I returned to eating meat and noticed less pain and weakness. During a trial of eating gluten-free, I realized it reduced my nerve pain. I became dedicated to eating gluten-free and eventually dairy-, egg-, soy-, beef-, and pork-free too, which reduced my over-all inflammation level. I realized that there were many different causes to my pain; it wasn’t all the autoimmune disease. Some pain was from general inflammation caused by my diet. Dietary improvements had no side-effects, so it felt like a clear win.

moose
Like this lonely moose surveying the meadow, I felt overwhelmed by the journey ahead.

Weaning the Medication: I’ll tell you what worked for me, but I’m not a doctor and I have no idea what would work for anyone else. My doctor helped me wean off my medication, even though she didn’t believe I could do it. Anyone trying to reduce their medication should discuss it with their doctor. I was initially on steroids, which helped me immensely, but then I couldn’t get off them. A consultant identified supplements to boost my underlying health so that I could gradually wean myself off the steroids. When I thought that I had reached maximum progress with the immune suppressants and my condition was stable, I began to wean myself off them. I returned to adding supplements to bolster my body’s basic health, since that had helped me before.

Quick reductions in my medication increased symptoms, so I played the long game. I first reduced my dose by 1/16th. After a few months of success at that level, I reduced another 1/16th (for a total 1/8 reduction from the prescribed dose). I would try that for a few months before I considered reducing another 1/16th. This would work for a while and then out of the blue, symptoms would return. When that happened, I would increase my medication until the symptoms calmed down. Then when I had stabilized for a couple of months, I would begin weaning again. It took about two years of this odd dance with the meds before I successfully weaned myself.

rainbow base
It took years before I had hope that I could like autoimmune disease.

Now: I’ve been medication-free for 12 years now. I still have pain and exercise is sometimes difficult because of the joint damage caused by the disease.  Acupuncture helps me, these days and I still find the anti-inflammatory diet helpful. The doctor is in control of your medication, but you are in control of your life; there is a lot you can do to reduce your symptoms. I accepted the long game so that I could keep working; maybe others could stop working and recuperate faster.  We each make decisions based on our personal situations, and that’s okay. We are all different and our approach to illness can be, too.

Good luck, reader. I know you have a tough row to hoe. Take care.

21 comments

  1. I believe food is our medicine and you’ve proven that. I’m sorry you had to go through this but glad to hear about the path your on. I’m actually interested in learning how to meditate. Did you write a post about that?

    Liked by 1 person

    1. I haven’t yet. I’ve taught some meditation classes, but I’ve not written any blog posts on it. It has been on my to-do list for a while. I guess I need to get moving on that!

      Liked by 1 person

  2. You should write a book about this journey. I am glad you persisted in doing what is best for you. And getting a cat is one of the best things a person can do 🙂

    Liked by 1 person

    1. Right! He was the best cat ever- so sweet and affectionate. I still miss him and dream about him.

      I‘ve thought about writing a book, but everyone‘s path to wellness can be quite individual, as it often begins with an illness that is at it’s roots physical, mental, emotional, and spiritual. Most people want to think it’s only physical.

      Liked by 1 person

  3. I admire your ability to get educated, get support, and deal with your pain without medication (eventually). Last week I wrote a post about my niece using an elimination diet (she found out she was allergic to dairy) to relieve her symptoms of severe recurring sinus infections. Good luck to you!

    Liked by 1 person

  4. Excellent post and I agree with you wholeheartedly.

    Gluten, dairy, legumes and a whole lot more contribute to my pain and chronic inflammation, but now…………even ordinary foods are giving me severe episodes where I’m ending up in the local hospital for 1,2 & 3 days at a time., close to a heart attack (I have inherited obstructive hypertrophic cardiomyopathy) or, approaching anaphylaxis.

    I can go without my prescription analgesics but with 5 separate pain conditions, I find my day is insufferable and now I’m more housebound, an insufferable day is both frustrating (and downright boring).

    Unfortunately, I’m unable to afford some acupuncture and other alternative therapies I used when still working full-time and I’m allergic to many essential oils now, so while I qualified as as Aromatherapist in the early 1990s and have a certificate in Herbal Medicine, they no longer really help much.

    I think we chronic pain sufferers appreciate the good days more than any normal healthy person can possibly imagine, but it doesn’t make it easier to get through the day on the worst days.

    Kudos to you for finding your path and getting off your heavy medication. I find deep breathing exercises and ‘counting’ each breathe to be helpful in my worst moments.

    ……..and then there’s watching the birds outside my lounge window, that occupy at least a couple of hours each day, to be a wonderful distraction.

    Liked by 1 person

    1. Your health issues sound overwhelming. I’m so sorry that they have taken over your life. It sounds difficult. Please don’t interpret my post as a suggestion that everyone do as I have done. I have often questioned my diagnosis, but the eye symptoms are classic autoimmune. The medication was a God-send while I needed it.

      I am well aware that when I retire I will be unable to afford many of the things that keep me going, and I find it disturbing. It will probably keep me working as long as I can.

      Thank you for your support on the food restrictions! Just about everyone I meet thinks my food restrictions are strange, but they really help. I had an ALCAT test done which found foods that caused me inflammation and eliminating those foods stopped my daily headaches. What a pleasant surprise that was! I hope you discover what is causing your newest problems. Could you have developed a sensitivity to any of your medications?

      Liked by 1 person

      1. I see the asthma/allergy/immunologist for the 1st time next Tuesday. I can’t afford it, as the $670 initial consultation fee (only gets a rebate of $224 from Medicare I think) and that’s just the first appointment. Hopefully, with all my evidence, symptoms, pathology tests and spreadsheets she might be able to confirm what I suspect might be MCAS (Mast Cell Activation Syndrome) in one 45 minute appointment (as I really can’t afford more tests and appointments). My old GP tested me for Lupus many years ago and of course I’ve been tested for Coeliac, Crohn’s, Ultcerative Colitis and a whole lot more. I’ve also had many tests and brain scans re the severe headaches.

        The bad headaches (sometimes migraine level) and food intolerance is my biggest problem at the present time.

        I see my HCM specialist Cardiologist on Monday (after the recent stay in hospital 2 weeks ago). I don’t think my HCM heart condition is the direct problem. I think the severe spike in BP, chest pain etc is merely my Food Intolerance getting worse and stressing out my limited heart action (which is very highly medicated).

        Of course I used to do a lot of hours of slow walking doing photography in the fresh air (park, gardens, beach) and found that helped. Last night the smell emanating from the reverse cycle wall heater/air-con. was making me sick. I also get a bad headache when I change the ink cartridges on my printers and that’s a fact. No one can tell me that’s not true. Had the air-con/heater serviced a few months ago and the tradesman found it riddled with mould – I am allergic to mould and often wonder if the 3 different apartments I lived in that were all flooded over a 17 year period might have worsened my FM/CFS/MCS. I contracted a severe pain condition in 1980 (though) after a couple of weeks of flu-like symptoms. But back scans revealed an undiagnosed/untreated teenage spinal condition so all my pain was always put down to ‘referred’ pain from my spine.

        My elderly Mother used to scoff at my rejection of so many gluten foods, but then, about 15 years before she passed away in 2012, she found she had developed a sensitivity to supermarket eggs and chicken, and used to nearly pass out when near pungent perfumes, so I bit not tongue not to say…..”so there you have it too”. In hindsight, I think my Mother had CFS/FM when I was a teenager and suffered all her adult life. She came from a generation that didn’t talk about their health or pain and just put up with it.

        I have 3-4 pain-free days per year and when they occur, it makes me realise how bad my pain levels are during the rest of the year 🙂

        Liked by 1 person

        1. I think that Mast cell activation sounds possible. I’ve read a lot about it snd still feel like I don’t fully understand it. I hope you get some answers. I’m surprised you found an immunologist who is knowledgeable because they are rare in the US. Some don’t believe it exists. I’m sorry that I have no helpful suggestions for you, but I’m glad you are on top of things and managing your care rather than falling into victim mode. Please, take care.

          Liked by 1 person

    1. It took all that and more. It is certainly a dividing line in my life. I’ll never be as fit as I used to be, but I’m happier and emotionally healthier. It’s a shame that I had to get sick to get here, but I appreciate my life now!

      Liked by 1 person

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