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.
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.
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.
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.
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.
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.
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.
Categories: chronic illness