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.

Lina.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (7)
  • rockcandi
    12 months ago

    Thank you so much Lina for sharing with us your positive thoughts within your eloquent words. Just like faith in God and Jesus doesn’t make sense to people who don’t know Him, hope and acceptance don’t make sense to people who don’t love daily with these horrible diseases. And even, probably especially, those of us who do deal with the struggles every day often come to those moments when we simply want to give up. Sometimes it makes more sense to me to just give in and stop trying so hard. But then I see my 2 year son depending solely on me for his physical, emotional, and spiritual well being. Or I watch my husband come home from work filthy and exhausted and I know he needs a hot shower and a warm meal, and no one will do that for him like me. And then there are the occasions when I read something that touches my soul and reminds me of all the reasons why I don’t give in, every purpose for which I persevere. Your words did that for me tonight. Thank you again and I pray you keep that positive outlook no matter what may come.

  • linaotalora author
    12 months ago

    I’m glad with your comment. Thank you so much.

    Regards.

  • Joy29
    12 months ago

    I really wish I could type more and tell my story. I survive because of this site….my only support. I want to comment so many times but don’t because it just hurts too much. I’m in tears for two reasons…..the pain is REALLY bad and for some reason this post really touched me. Thank you SOOOO much for writing it and to others reading this that have posted other stories….I appreciate you all. Thank you!!!!!!!!!!!!!!!!

  • linaotalora author
    12 months ago

    Joy29, I understand your pain and your tears, I have lived them in my own flesh and is important to keep your mind healthy, hopeful and positive despite how difficult it may seem. We now can count with wonderful medicines, so try to find the best option with your Rheumathologist. The moment to tell your story will come and you will know when you are ready

    Keep strong, this disease is for te brave like us.

    Regards.

  • Richard Faust moderator
    12 months ago

    Hi Joy29. So sorry to hear that you are struggling so much. Glad to hear that you find the site helpful and that this story resonated with you. If your RA is not under control, please do not hesitate to speak to your doctor about whether your treatment regimen should be adjusted. Everyone’s RA is, of course, different and thus what constitutes control is different, but maybe there are options. No one will look out for you like you. Thanks for being a member of this community and know that it is here for you. Best, Richard (RheumatoidArthritis.net Team)

  • Erin Rush moderator
    12 months ago

    Hi linaotalora! Good grief! I am sorry you had such a long and painful road to diagnosis! I am glad you kept pushing and advocating for yourself and your health.

    You have a wonderful way with words that come through in your writing. Thank you for sharing your thoughts on hope and perseverance with this community.

    Thank you for sharing your hope and positivity (mixed with a helping of honesty and pragmatism!) with us!

    I am so glad you took the time to share a part of your story with the RheumatoidArthritis.net community.

    Best, Erin, RheumatoidArthritis.net Team member.

  • linaotalora author
    12 months ago

    Thanks for your comment. I really appreciate you took the time to read it.

    Regards

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