Acceptance, hope and gratitude.
The definition of hope is: to wait; State of mind that arises when what is desired is presented as attainable.
Hope is a feeling
In my opinion, more than a mood or a state of mind, is a feeling that needs to be cultivated daily to avoid falling into the deepest depression when the outlook does not seem to be encouraging. It is never encouraging when you have to carry with a disease that will be with you until your last breath. It is never encouraging when you have gone through a bad diagnosis, unnecessary surgeries, several failed treatment schemes, alternative therapies, and what is even worse ... when you experience the worst crises of your life while opening your eyes daily and taking half an hour to put on standing the overcoming incomparable pains, keeping hope can become the most difficult task of your life.
Raising my own awareness
My case has been particular since the beginning. For some time now, I have wanted to share my experience as part of my responsibility to raise awareness, to end with common myths and the false knowledge acquired through all the fake sources of information that are all around Internet and social media, so that this can help people who are going through a similar case and shorten the time it has taken me to step into one of the most important phase in the process of recovering health: acceptance.
Here is my story:
I am 31 years old and 13 years ago my symptoms began, not in the clearest way for the doctors and therefore an opportune diagnosis (essential for the disease control) was not the expected one. Unlike the commonly known about RA or the symptoms in which many doctors are “married” with, there are cases that do not meet these requirements, such as: is not always in symmetrical joints, there is not always a genetic predisposition of suffering RA, is not always manifested in more than one joint at the beginning, laboratory tests do not always confirm that RA exists as an autoimmune disease, it is not an exclusive disease of older people and RA also has more invisible symptoms like fatigue and decreased visual acuity that are not always taken into account. I started with pain and swelling in my right wrist. Without reason which explains it. At that time, the doctor who took care of my wrist was a hand surgeon, who after several infiltrations to reduce inflammation, medications and tests (laboratory tests, MRI, bone scan) failed to explain or improve my condition, so he referred me to a Rheumatologist. After a long wait for an appointment with that "rheumatologist", she just looking at my face concluded that I did not suffer from anything that she could help me with. So, I went back to my hand surgeon, who had no choice but to suggest a right wrist synovectomy in order to determine with the synovial tissue biopsy, what could be the cause of the inflammation. The first surgery did not report any abnormality, the second neither, the only result of those two interventions ended in having an extension degree of 0 ° (when it should be 80°), a bending degree of 5 ° (when it should be 70 °), and beautiful scar impossible to hide.
After that initial catastrophic management and 4 years later, soreness appeared in another joint (the left elbow), zero "typical symmetry of arthritis". With other health insurance and better management, I began to see a real rheumatologist and with whom I am fortunate to still count 8 years later. He initially diagnosed me with "Seronegative RA". When you are 24 years old and all the tests give you negative results, you feel that you are tagged in a diagnosis with which you are not satisfied. We are so conditioned to make like a “checklist” with symptoms and results, that if you don’t comply with the 100% of those mandatory criteria, you don’t accept the diagnosis so you don’t start to look introspectively and instead of waiting for a Why? , you delay the process of creating health by looking the "for what" and the "what". What is my body trying to teach me? What behaviors should I change? What habits should I assume? What things should I thank for those daily teachings? What should I learn from RA?
This phase of acceptance, which is not easily reached, is the key for the body to harmonize with the available treatments. I went through: methotrexate + prednisolone + folic acid, hydroxychloroquine, sulfazalacin and leflunomide without lasting success. The one that lasted the longest was leflunomide (5 years) until the hepatic toxicity of the drug began and a loss of efficacy with the dosing modification. I was almost all of 2017 without treatment, only with pain management with NSAIDs, until at the end of the year (this time now with a seropositive diagnosis and an exacerbated disease activity), my rheumatologist decided to start with biological treatment; a relatively recently created wonder that has been able to get me out of that black hole in which a rheumatic crisis can submerge you.
Despite of the amount of side effects described in these medicines, being able to count on them and their high effectiveness slowing the progression of the disease are magical and an incentive to not lose hope. That word of which I spoke to you at the beginning, that word that I tattooed in my first affected joint to remind me daily that I must feed by wishing with all my strength to reach a stage of remission of the disease, to not be part of the percentage that has serious side effects, taking care of my body, loving and respecting me, changing toxic habits, evolving daily, learning from my mistakes, forgiving me for all the unconscious damage I may have done to my body, but more than all this, we must keep alive that hope that a cure will be available as clinical research goes forward.
To finish, I leave this phrase of the author Daniel Defoe: "All our dissatisfaction for what we lack comes from our lack of gratitude for what we have." Do not forget to thank God (or whatever you believe in), every moment that we can enjoy health, treasure those moments with deep love and the healing feeling of gratitude will work in every pro-inflammatory cell of our body.
With my total admiration for all those who know the RA closely, I wish you the best, courage and hope warriors.
After the past 2+ years, how do you feel about telehealth appointments to manage your RA?