MY STORY
PERSONAL DISCLAIMER: THIS IS MY STORY. I AM NOT GIVING ANY MEDICAL ADVICE OR PROMOTING ANY TYPES OF TREATMENT. I AM ONLY SHARING MY JOURNEY TO SPREAD HOPE AND INSPIRATION TO OTHERS.
My autoimmune story begins in 2006. I had just had a baby. I didn’t sleep, I was stressed out, I was tired. You know, a normal mom of a newborn. Within weeks I noticed that I was loosing weight pretty fast. I thought, “Wow, this baby weight is coming right off!” With minimal exercise, I figured it must be from the breastfeeding and the calories I was burning since I wasn’t sleeping much. I really didn’t think much of it. Until one day, I felt like my heart was going to explode, it was beating 100+ even while resting, I had diarrhea everyday then one day I couldn’t even leave the house. I even had an embarrassing accident while in a store. One morning I was in the shower and told my husband I felt like I was going to pass out and he MADE me go to the doctor. I hadn’t really been to a PCP since I was a child, who retired some 20 years ago. So I called that office, saw the nurse practitioner on staff, she took one look at me and said “Well, its your thyroid... and you are pregnant again.” I was diagnosed with Graves Disease… hyperthyroid. I went to my OBGYN who found me an endocrinologist that could work with me and my pregnancy. I started medication right away because I was worried about the baby. We got my thyroid under control and I had another beautiful healthy baby boy. This is about when everything started going down hill. I gained 75lbs, my thyroid was so slow and I developed Hashimotos. Great, another autoimmune thyroid disease. They wanted to radiate my thyroid, but I had just had a baby and was breast feeding again and I wouldn’t be able to hold the baby or feed him for 3-4 days after radiation. I stopped the medication and never went back to the endocrinologist again. My OBGYN continued to monitor my thyroid for me and slowly it started to regulate and I haven’t taken thyroid medication since. I’m so glad I didn’t let them radiate my thyroid!
Fast forward about 7 years…I wasn’t living the healthiest life style. I was eating fast food regularly. Worked a stressful job, was a pack a day smoker. I rarely exercised. I never got more than 4 hours of sleep a night. I was straight up unhealthy. I was depressed, stressed, unmotivated and just barely getting by. One night I woke up with a pain that I could only explain as labor. It felt like I was having contractions. They came every 5-6 minutes. Something was wrong. I went to the ER and I had diverticulitis. They said they wanted to cut out a part of my colon. I said no. I did however stay for a round of IV antibiotics and then checked myself out. I haven’t had a diverticulitis flare since. So glad I didn’t let them cut out my colon!
By this time the kids were “preteens”, they needed their mom. I would do anything for them. I worked long hours and and never said no, (bake sales, PTO lunches, school events, etc) doing what I thought I had to do to be a “good mom”.
One day my knee started to hurt, I would ice it, put on a compression sleeve, pop 4 ibuprofen and go on with my day. Then one day my ankles started hurting, my feet starting hurting, I had a ridiculous amount of inflammation. Everywhere. I could no longer straighten my arms or my legs. It got to the point where I couldn’t drive because my hands hurt so bad I couldn’t hold on to the steering wheel. I couldn’t push the break because the slightest pressure would bring tears to my eyes. I found myself taking the long way to and from work because the anxiety of driving on the Phoenix freeways would cause panic attacks. I would have to pull over 4 times on my 45 minute drive because I would get this overwhelming feeling that I was going to die. At any moment. Then one day I had to call in to work because after taking a shower that morning, I was so tired I had to crawl back into bed. I finally decided I should see a doctor. After a few tests and a whole lot of emotional support from my amazing doctor friend, I was diagnosed with RA. My RA Factor was 167, my SED rate was 70 something, my CRP, in the nineties. There was no question… I had RA.
Shortly after I had to quit working, I went on disability. I could no longer walk, and had to rely on mobility assistance to get around. I thought my destiny was pain, wheelchairs, and disability.
MY HEALING JOURNEY: PART I
My first visit to the Rheumatologist was scary. I was so stressed out, scared, confused. With labs in hand I went some where my very close doctor friend referred me too. She ran new labs to confirm the numbers and told me to come back next week. She gave me a script for a steroid, several pamphlets with medication info (DMARDs and Biologics) and I went home with a defeated feeling. I thought I would feel better now knowing I was going to get treatment, that there was a possibility that I could no longer be in pain, but for some reason I felt the exact opposite.
When I went back for my follow up, the doctor recommended a DMARDs (Disease-modifying antirheumatic drugs) called it into the pharmacy, sent in a new lab order for 2 weeks and said to get an IV of steroids in the office before I left because my inflammation was so high. I told her ok and then just left the office. I still didn’t feel good about the treatment options.
I picked up the medication and it sat on my kitchen table for those 2 weeks. I did the labs and went back for my follow up. I told the doctor I did not take the prescription. I couldn’t even really explain why. I just didn’t want to. She asked if would take one that you only have to take once a week, a self injection. She said it can possibly even put me into remission. “I think this is your best option to slow your deformities”. The word deformities really scared me. I agreed, she called it in, sent in new lab order and told me 2 weeks. About 4 hours later the pharmacy called to say my prescription was ready for pick up. My insurance doesn’t cover it and the total was $5600 for 28 day supply. That was my sign. Don’t take these medications. I went back to the rheumatologist again for my follow up. I told her I did not take that medication either. She continued to say there was no reason to do the labs and keep coming back if I wasn’t going to take the medications. Then she said something that would change my life. “If you don’t go the traditional route, you need to see a naturopath or functional medicine practitioner.” I never went to the rheumatologist again.
MY HEALING JOURNEY: PART II
I started researching RA. Obsessively. What could have caused this, what are all the symptoms, what could fix it. I researched gut health, supplements, diets... everything. I was so overwhelmed. I suffered for several months with untreated RA.
I remember the day I decided enough was enough. I was on the phone with disability… I was pacing on the patio in the transferring game on the phone. I opened my pack of cigarettes and I only had one left. I knew that wasn’t going to be enough to get me thru this phone call. When I hung up the phone I was so exhausted, my anxiety was at an all time high and I did not want to drive to the store for cigarettes. I opened my mediation app on the phone, took a nap and never bought cigarettes again.
The next day I decided to just pick one of the diets and try it. I started with juicing. I juiced every day. I loved it. Finding all the different types of anti inflammatory fruits and veggies. I did it for several weeks. However, I didn’t really notice much effect. I picked another diet, one that claimed it could CURE my RA. The science behind it made sense. I watched video after video of testimonies. I was sold! However, this diet came with a price and a wait list. I wasn’t working and I couldn’t afford the extra expense. The first day/phase information of the program was free. I decided to just try it and see what happened. I fasted for the first 3 days and only drank celery juice. Man, that was rough. Then the rest of the diet was plant based. I ate grains, and veggies but I felt like I was getting worse. I felt horrible and decided that one wasn’t for me. I picked another one. AIP. The first 3 days I felt horrible. It felt like I had the flu. Then one day I was in the kitchen cooking my sweet potato and spinach breakfast and my husband came in, I can’t remember the conversation, but I do remember he said “It seems like you feel better.” You know what? I DID feel better. No more brain fog, my fatigue was better, I was happy. Could this possibly be working? I told myself I was going to commit and enough was enough.
MY HEALING JOURNEY: PART III
AIP was not easy. I had to carry a cheat sheet with me everywhere I went. I felt like I couldn’t eat anything. Eating out was out of the question. I ate the same thing for every meal because I only focused on the things I couldn’t eat. The second I decided to focus on the things I COULD eat, it got easier. I found recipes of delicious foods and I enjoyed cooking and eating again.
Bonus, I lost 50lbs! The inflammation was gone, my gut was healed, my pain level went from a 9/10 to a 5/6! I was a new person. At About this time I decided that I could possibly go back to work. I started looking for a part time job. I answered an ad on Craigs List for a naturopath's office as a part time office manager. I just knew this is where I was supposed to be. I met with the two NMD’s on a Saturday afternoon and the rest is history.
I have found hope and joy again where as for several years I had lost. I have learned so much in my own healing journey and have gained great compassion and inspiration being a part of others healing journeys. I worked there for almost 7 years. That was my greatest decision, and I am ever grateful for the opportunity to be a part of something that has helped so many people including myself!
MY HEALING JOURNEY: PART IV
One day while at work, I picked up a local Scottsdale Health magazine that is delivered to the office. On the cover was a woman who was living with RA. She was strong, and beautiful and noticeably happy. The article was about how she was a body builder, an athlete, a business women, and how she lived and managed her life with this debilitating disease. I thought maybe this is the key and the missing part of my life in healing. My pain level was now about a 3/4 so I decided that day I was going to go hiking.
I used to love hiking. I grew up with the Phoenix Mountain Preserves in my back yard. I was in the hiking club in Jr. High school. I hadn’t set foot on the mountain in over 15 years, and I felt like this was going to be it. I went by myself - on a cloudy hot and humid July morning. The first step on that mountain I felt genuine happiness. I felt Ike I was home. I was where I was supposed to be. I didn’t go far, maybe not even quite a mile. It was the furthest I had walked in 3 years. I felt proud. I felt happy. I felt like I had found my thing.
The next day the family decided we wanted to adopt a dog. The sign on the kennel of one dog said “What mountain will we hike first”. Yep, that’s my dog. I started hiking every weekend. Each time a little further and further. Shortly after I started hiking, friends started asking if they could to hike with me. I was motivation for others that had lost it like me and I was encouraging them to start moving. Hiking was helping. Hiking saved me.
I started working on self care. Making sure I made time for myself. Meditating, praying, massages, pedicures. Genuine “me time”. I started to be able to walk without pain and my CRP went from 12, then 4, then .2 Seriously… POINT 2. Movement was helping. Movement was decreasing my inflammation. Movement was decreasing my pain. After a while, a friend of mine joined a gym so I said I would join with her and try some of the group classes. I fell in love with the Les Mills programs and did BodyPump and BodyCombat 3 times a week. I was gaining strength, I was gaining happiness, I was gaining a healthier self.
MY HEALING JOURNEY: TO BE CONTINUED
This journey is forever. I will have flares. I will have bad days. I will have setbacks. I also realize there may come a day when I need traditional medications and I am grateful they are available. I know they are helping millions of RA warriors and Autoimmune warriors out there! In June of 2021 I had a TIA, aka "mini stroke". I can only assume from stress. I was transferred to a stroke hospital and spent 5 days recovering there. Thankfully I do not have any post stroke symptoms and I have fully recovered. We did also discover I have a congenital carotid artery issue where one side of my artery is not attached. MRI showed enough flow from the other attached side so there is nothing to be done with that, but just another health hiccup!
UPDATE: On October 23, 2023 I experienced what they call a rare Thyroid Storm and had a mild heart attack. Who knew your thyroid could wreak such havoc in your body! I have had a relapse and Graves Disease is back... I have now chosen to take some medications with the intentions of continuing my natural journey and working with both my cardiologist and a new endocrinologist to be off medications and back in remission as soon as possible. I will continue to educate myself, I will continue to have hope, I will continue to rest, and I will continue to MOVE.
I will continue to be RA STRONG!