Medical Mistake or Did I Heal My RA?

Last week, I went to the doctor to get an update on my Rheumatoid Disease bloodwork. I entered the exam room expecting my Rheumatoid Disease was still present and to stay the course with my diet and exercise routine. Imagine my shock when my new doctor said I didn’t need to see a Rheumatologist because I didn’t have any markers showing Rheumatoid Disease that would warrant a Rheumatologist referral. WHAAAT?! In 2013, I was diagnosed with Rheumatoid Disease (an inflammatory disease where the body attacks itself, for me, it was attacking the joints in my toes and my right shoulder). I thought I just broke my toes when I accidentally hit my foot against my hardwood coffee table. The pain was intense; I have never broken a bone before.

I thought my injury would heal on its own. I was wrong. Ignoring the pain, I decided to go on a two-week trip to Europe with a friend. Upon returning home, my foot was so swollen that I had to see a doctor because it looked so inflated. I was put in the imaging machine and could see the inflammation in my feet on the screen. When my general practitioner confirmed the inflammation, I was referred to a Rheumatologist, otherwise known as a joint pain specialist. My Rheumatologist was well respected in his field and had won accolades for his work in the area. He listened to my story and confirmed I had Rheumatoid Disease. With no immediate family member history of Rheumatoid Disease, I was left skeptical of my diagnosis.

My Rheumatologist stated I would have only about 7-10 “good years” left. Left with no options other than accepting the diagnosis, I researched my medication options and decided to rely on my Rheumatologist’s knowledge and science. I proceeded with his recommended treatment plan. I chose to go on a biologic called Enbrel. This medication requires cold storage and a once-weekly injection to tamp down the inflammation in my body. It also states that I must be “careful” when taking Enbrel when being around anyone who may be ill because it lowers my immune system, making me susceptible to becoming sick. I lived with this diagnosis and all the stress that comes with this diagnosis for eight years. Instead of caving in to defeat, I decided to act because when my Rheumatologist told me I would “never be cured,” I found that statement unacceptable and got to work with my own research and race to find my cure.

Possible Medical Mistake?

Last week was life-changing for me. Instead of enjoying my celebratory glass of wine with lunch, I was running through the five stages of grief. Was my new general practitioner, right? What does she mean I don’t have any presence of Rheumatoid Disease anymore? Maybe this was a fluke, and next time I get blood work done, my familiar friend Rheumatoid Disease will rear its ugly head again. Who am I now? I am cured, Yippee!

The question remains, was the initial diagnosis correct?

I would be lying if I said I am not upset. Rheumatoid Disease and the words “never be cured” and “roughly 7-10 good years left” consumed me. My thoughts were constantly on the sands of time and preserving the “good days” I had left to the point I made my life and those around me miserable. Not only did this painful disease diagnosis engulf my entire identity and sense of value it also gave me an unexpected gift that I would never have received without it. It gave me my fighting voice.

Growing up an American Mexican, raised to “be good, keep quiet, and don’t question authority figures,” was baked into my brain. Questioning and challenging authority figures was like walking off the job; you do not do it. I didn’t expect a disease diagnosis to free me from old school mentality to becoming an RBG fan resistance fighter and a disease detective.

One book, The Disease Delusion by Dr. Jeffrey Bland, Ph.D., was a gamechanger for me. After reading Dr. Bland’s book, I decided I didn’t have to accept my diagnosis or the fate my Rheumatologist envisioned for me. I now had the power, ability, skills, and knowledge, to be my hero and cultivate a better future for myself.

I started with that book and then spent hours almost every day and night online trying to find clues on people’s blogs and RA support websites to find my personal solution.

Most of the blogs and support websites I found online were unhelpful and drab. I decided to do better and committed to learning as much about the immune system without going to an overpriced medical school. As I acquired more knowledge, I decided to build a support website of my own and feature the books, research, and information I found helpful on one website. To be clear, no, I did not find the cure for everyone’s Rheumatoid Disease; I found treatments that worked for me and my individual Rheumatoid Disease diagnosis. My plan may not work for someone else; I believe everyone should have a particular customized plan. I found two books particularly interesting in my research: The Mystery of the Exploding Teeth and Other Curiosities from the History of Medicine by Thomas Morris, and An Elegant Defense The Extraordinary New Science Of The Immune System A Tale in Four Lives by Matt Richtel. Both books describe that every person is unique, and customization of treatment is critical.

Another book that reaffirmed the mind-body connection for me was The Inflamed Mind by Edward Bullmore. In combination with my slight fascination with watching the show My 600 Lb. Life, The Inflamed Mind confirmed what I knew all along; we must heal our mind if we are going to heal at all. As documented in the reality show, the people that succeed the most with achieving their weight loss goals had some exposure to a mental health therapist. Thankfully, I have never been considered obese I watched the show out of fascination for the doctors who worked in concert to assist their patients in achieving their health goals. I did, however, seek a form of self-help therapy by reading books like The Secret of Letting Go by Guy Finley and The Inflamed Mind to address my feelings. Since my life is like a telenovela, I needed to do some peacemaking with thoughts, memories, and emotions I had stored-up. Making peace with my thoughts and feelings was freeing. I can recognize my feelings, acknowledge them, and put them in a completed file to move on with my day faster now rather than allowing them to smother me to death, which is refreshing.

I decided to call my website Simply Rheumatoid because Rheumatoid Disease can be an invisible illness. The joint pain and fatigue are not always outwardly visible, making the disease challenging when dealing with others. My friends and family thought I was making too “big a deal” about my diagnosis and that “I was fine” or “overreacting” concerning my overly hygienic routine and needs. Most people believe Rheumatoid Disease is just arthritis. They didn’t hear the realities of the word disease like I did when my “licensed” Rheumatologist said, “you should be a little more careful when around people who might be sick.” What sucked was when he told me that “you probably shouldn’t wear high heels anymore.” Talk about soul-crushing words. My image of success was me in a well-cut Tahari suit and heels. Being told to kiss wearing high heels goodbye forever was devastating. My self-confidence quickly disintegrated like a water drop on a sizzling hot pan; shoe shopping was mental torture for me. If I couldn’t be that ideal successful woman I had seared into my brain, who could I be? Was success now out of the cards for me if I couldn’t dress the part? I felt it was.

When I started building my website, I didn’t have an agenda other than to share what I was learning and useful links to websites I frequented for information regarding Rheumatoid Disease. I started my website even though my vision for it wasn’t complete and it was imperfect. I learned how to build my website from scratch, and I had to learn some light coding. I designed and opened a support t-shirt store. I secured a US Trademark to cover my blog and my store. I am not a writer; I had no clue what I would blog about that someone else would find valuable enough to return to my website more than once. The shirts and apparel I designed and tried to promote myself, to date, still have not produced a single sale. (My store is currently closed because of manufacturing delays due to Covid).

I paid for all the fees and taxes to advertise on Google and Facebook. I learned about targeted ad marketing on social media platforms, sales taxes, domain names, and trademark disputes. One of the big reasons for my lack of success is my hesitancy to do a YouTube video to promote my business and brand. Yes, I failed to market my support shirts and apparel for Rheumatoid disease, but I didn’t fail to find the answers I was looking for to send my disease diagnosis into the trash file for now. I used my research skills and love of learning to find the answers I needed to stop inflammation from running rampant in my body. I discovered the power I have to change my fate. I found a newfound respect for science and history, especially food history. The keys to my success were a combination of my commitment to finding answers and the willingness to try new treatments and theories. In addition to my foot injury, my shoulder hurt, and I could not take a full breath of air. A light bed sheet barely brushing my toe sent painful shockwaves throughout my nervous system. The intensity of the pain went straight up to my brain. I can compare it to the feeling of the dentist was spraying cold water onto an exposed nerve in my head. I could not kick the bed sheet off fast enough to stop the pain. As for my breathing issue, my friends would talk me into joining them for a spin class, and I would humor them because the invite would usually include going to brunch afterward. While my friends breezed through spin class, I had to stop midway and slow down because I could not take a full deep breath. I had pain in my right shoulder that also produced a wheezing sound that I could only hear. My friends noticed my struggle but could only offer suggestions for care (I found a naturopathic because of them) and give me sad pity-filled looks, which I took as caring and motivating.

Despite everything I learned, l fear no one listening to my story, dismissing it as no big deal, everyone already knew this, and I wasted my time. I have never discussed my #Metoo incidents; they are also a big part of my story. I won’t elaborate on those painful memories other than to stay this: I allowed them to consume too much space in my head for far too long, which resulted in years of lost earnings and productivity that I will never be able to get back. I hope other women choose not to allow incidents like that to swallow them whole as I did; I hope they decide to live productive lives by surrounding themselves with people who understand these incidents are not anomalies. I now have the confidence to leave those painful memories behind me and choose a new future for myself.

History has told us the answers we seek, and we should listen, learn, and leverage that knowledge to build a future where every person experiences head-to-toe care. I believe healthcare is a human right, and I don’t think that overpriced insurance plans are the solution. We should consider wellness as the combination of genetic profiling, fitness, nutrition, chiropractic care, and psychology. Without my drive to find a solution for myself, I wouldn’t have taken an interest in the history, research, social media, and technology I discovered. What I choose to do with my newly acquired skills and knowledge is a mystery because, like many, I don’t necessarily hold the keys to my future. I wouldn’t have achieved success without a naturopathic willing to run a food allergy and a stool test and a chiropractor who understood my hesitancy with treatment but stood his ground with caring patience, and understanding. Without them, my story would not be a success. Without the doctors, authors, scientists, data research analysts, and bloggers, my story would not be a success story. My success in sending my Rheumatoid into the history files depended on all the factors and contributors I mentioned in this article and a life partner who gave me the resources and support to achieve my goal.

I hope someone finds this helpful. Please see my Take Action Tab on my website if you are unsure of where to start with respect to your personal situation. There are no quick fixes.

With warm, heartfelt concern for everyone’s wellbeing,

Lidia Page

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