May is Arthritis Awareness Month, and the Arthritis Foundation is kicking off their ‘Fight for 50’ campaign to raise awareness about the reality of living with arthritis—and to fight for the more than 50 million Americans suffering with this painful disease. As part of this campaign, the foundation is encouraging their readers to post stories about themselves or their loved ones facing arthritis. As you know (or might know) if you have been reading my posts regularly, I have been struggling with Rheumatoid arthritis for the past two years and boy, it has been a tough journey. When I paused to think about all that has happened in my life in the past two years since my diagnosis, I thought it was worth sharing my story with others. Hence I submitted my story too and it is up on the Arthritis.org site now on the following page :
http://www.arthritis.org/fightfor50/stories.php. I have copied and pasted my story here for my readers. But do check out the other stories on the Arthritis site. Hope my story and the other stories help you to increase your knowledge about the different types of arthritis and help you empathize better with individuals suffering from the same since it is not only a physically crippling disease but is an emotionally challenging one as well.
Here is my story as published on Arthritis.org:
THIS IS MY FIGHT
Since my mom had Rheumatoid Arthritis (RA), I always had that in the back of my mind that I might get it too some day. But never had I imagined that it would hit me so early and so aggressively! RA struck me suddenly at 42, two years ago. Overnight my world changed. In a matter of a year, I went from ‘hyperactive supermom’ who would be up on her feet from 6 in the morning till 11 at night, to almost an ‘invalid’ needing help for the simplest of chores.
Pain was paramount. Severe shoulder pain episodes waking me up in the middle of the night. I couldn’t sleep and would just sit up or walk around in the dark. At first only the back of my knees would hurt and then gradually the knees started getting worse. I would stand at the top of the stairs and pause for a few seconds trying to muster up the courage to take the steps down! There was swelling in my hands making it difficult to do anything in the kitchen. I had so much stiffness in the mornings that I couldn’t even get up and make lunches for my kids – that part hurt the most. Shoulder pain, Ankle pain, foot pain, elbow pain – Every day it would be a new joint. As if a monster was moving inside my body and going to the different joints and hitting them with a hammer.
My rheumatologist put me on a medication that is first line for RA called Methotrexate. It is actually a chemo drug but used in lower doses for RA. I was doing reasonably ok – meaning about 50% better on it but the severe pain episodes were still coming. And then after being on it for about 7 months, the doctor increased my dose to the highest allowed. That brought a severe reaction with me getting an episode of severe uterine cramps – I was on the floor writhing in pain and I passed out. My husband called 911 and l found myself in the ambulance and the ER! That incident shook us both and we asked the rheumy to change the medication. He put me on a different medication called as Lefluonomide, which was clearly not a good one for me. I lost 15 pounds on it in 4 weeks and I became so severely weak that I didn’t have the energy to take even a few steps in my house.! I developed shortness of breath and would start panting if I climbed the stairs in my home. All these side effects made me decide to stop meds altogether and try naturopathy. I went to India last summer taking a break from work(I was able to go on Short term Disability) and also tried Ayurvedic treatment which sadly did not help much.
Although my naturopath had me on a dairy free, gluten free and night shade free diet, it was not showing any results. My condition got worse and worse. Work was also getting stressful. I had neck pain too now. There were times when I felt completely depressed and frustrated. I would look at the mirror and ask myself – who is this woman? What happened to the girl who could do 30 Kathak chakkars (dance twirls) at a time! Is this the same person who would be standing in the kitchen for 5 hours at a time cooking for a crowd? I would weep alone in my bed at night not wanting my kids to see my pain and anguish.
Husband and kids helped out a lot. We hired help to cook and do things around the house. After trying so many different things, instead of getting better I was getting worse. I did not know what else to do. I had run out of options. I was totally inconsolable as I didn’t have a plan. Last November, I started seeing a new rheumatologist and he told me I had severe RA and he recommended Rituxan infusions, which is a highly potent injectable used to treat some forms of cancer. It comes with a serious potentially fatal side effect of PML (Progressive Multifocal Leukoencephalopathy). Being a Pharmacist, I knew about this side effect and so I requested him if he could still keep me on the oral meds and asked if I could be on a combination of oral meds – Methotrexate and Plaquenil. He agreed although he was not very hopeful. I was hopeful that the lower dosage of each medicine in the combination would help keep the side effects on the lower side.
Around the same time, I started doing meditation by the encouragement of a co-worker who is a close friend too. We started reading the Bible together every week. Being able to connect with God had a profound impact on my perspective. I went from ‘feeling sad about myself’ to ‘feeling wonderfully positive’. Now once again I wanted to give diet a try since I had read so many case studies about individuals turning their autoimmune disease around by healing their guts with the right foods. I consulted with a new naturopath from California who put me on the ‘AIP or autoimmune protocol’ diet, which is a ‘grain free’, dairy free’ ‘nut free’ and sugar free’ diet that relies on nutrient dense foods like fresh vegetables, fruits, good quality fish and meat to heal the body. I am so glad that the naturopath also pointed me towards Dr Sarah Ballantyne’s ‘The Paleo Mom’ website. I was so overjoyed to see all of Sarah’s posts that talked about the science behind the AIP. I became increasingly positive and embraced AIP in its entirety!
And guess what? I slowly started getting better. So what was working now you may wonder? Was it the medications? Or the diet? or my positive attitude? I really think it is a combination of all three. I am able to do a lot more things by myself now than before. And I am continuing to work to heal my body. I regularly exercise, do yoga and do meditation. I am grateful to God for helping me to make these positive changes in my life. I also quit my stressful corporate job in Jan of 2017 so that I could focus on healing and getting better. I now spend my time blogging about my ‘autoimmune paleo’ recipes and studying more about natural healing. I still have a long way to go but I hope my story motivates fellow RA sufferers to ‘not give up’ and to remain positive and hopeful. Always count your blessings and be thankful. Things will definitely start turning around!
Update as of May 2019:
I continue to be well and still am largely on AIP even though I have reintroduced most spices and some nuts and seeds. I know that the diet is working for me along with my medications because every time I eat outside of AIP like rice for example, I get some kind of pain flare! I am now a Certified Nutritional Therapist trained at the NTA and I really want to help a lot of people who are suffering similarly in pain as I was. I am so grateful to God for guiding me towards the right treatments and lifestyle changes that turned my life around. I tell all my clients – “Be Positive, Keep the faith and you will get better!”