Posted in Chronic illness, Health

A future in the balance

It’s been roughly eleven years that I have been diagnosed with RA. I have experienced many flares that bring excruciating pain and I have been rendered nearly unable to function in today’s day to day life. But, I have also been blessed with times of remission, and nearly pain free periods. Those are the days when I give special thanks and where I’m grateful and in tune with my surroundings on a different level. I already am, but even more-so then and those days become a precious gift.

The pain never goes away completely, but after a bout of flares, the remission periods of little pain become much more tolerable. It is usually the winters that are tougher, and I have frequently referred to myself as the human barometer. I can pick up on approaching storms, and the pressure changes make my bones heavy and ache. At times I know before the meteorologists know. I feel clumsy on those days and everything takes more effort. After winter, a period of relief usually follows, but this was not the case this year.

Winter came to an end earlier this year, but the symptoms remained and never dissipated. The only difference was varying degrees of intensity, but the nagging pain remained. Life changed for me at a faster pace this year. I was reevaluating my truths and everything I have come to know in my journey. Not really a bad thing and again I realize that it was adversity and pain that stretched me into my higher self as a person. I now recognize those patterns and by knowing that the outcome is always something beautiful and greater if you carry hope and belief within your heart, I have learned to embrace the pain. But I also learned to understand how someone becomes depressed or gives up all together, not wanting, or unable to face another day filled with pain, be it physical or psychological. It was difficult to function and even more difficult to make it through a day at work. Minutes turned into hours of agonizing pain and even hiking became a challenge for longer distances. I didn’t trust myself and my footing was unstable and frail on the trail. I had no choice and requested a referral to a rheumatologist. After a few troubles and denials, I was finally accepted by a local praxis. Yippie…right, but now is probably a good time to remind you that I have little belief and faith in doctors these days and that my first rheumatologist placed me on cancer medicine without my knowledge, that depleted almost all of my white blood cell count. A common could have killed me without me knowing it. Needless to say I never went back and have been on my own ever since, going through life with a chronic illness untreated.

My September trip to Germany was around the corner and I was in so much pain. I had no idea of how to make the strenuous journey, handle the luggage and the stress of the trip without triggering an even bigger flare. I had to take charge and off to the new doctor I went just before the trip. I saw a nurse practitioner and I liked her a lot. She took the time, she listened and still had a genuine desire to help vs. being consumed by pharmacy kick back of prescribing pills and seeing her patients as a number and dollar sign. She wanted to be sure of what she was dealing with and a barrage of blood tests in the excess of over 1000.00 dollars was ordered. In addition there were X-Rays of my hands and wrists. I told her of my fear of the upcoming trip and she offered steroids I could take as needed in order to have some quality of life, manage the stresses of the trip and be able to function while in Germany. I knew I had no choice, despite my pill dislike and later that day I filled a prescription for Prednisone. Over the next few days it would diminish the edge of the pain, making it tolerable and I left for Germany. Prior to leaving, we scheduled a follow up appointment to go over the blood work and the X-Rays. I wondered about the results while I was in Germany and I knew it was time to face the truth. I was wondering if RA was the only info she would confirm or if a truth would follow that I wasn’t even aware of yet. I tried not to think of it too much and I surrendered. It was out of my hands and I had to be ok with whatever was coming my way. If I needed to believe more than ever, then now was the time to do so. Regardless of the news, it would be from there that a treatment plan would follow, where a decision might be required, where I find out where the path was leading and where I discover what was on the other of the hill that I was clawing my way up to.

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Author:

Who am I, and why I write. I’m a dreamer and I’m not the only one. I am the one holding on to the silver lining when the skies are gray. I’m a believer that nothing is coincidence, but has purpose. I’ve made mistakes, and I see them as a part of who I am today. I have lost myself in order to find myself, and I still do from time to time. In a good way. I’m a big child who laughs until my belly hurts when life wants to be serious. Career wise: I’ve been there, done that, and I took “The jump” off of the hamster wheel to change my future. I didn’t land all that softly, but I still did it. Coming full circle, I had it all, and yet I was lonely and had nothing. Today I choose to be a collector of memories and I chase moments, instead of martial stuff. Less is more, and I prefer quality over quantity. You’d be amazed at how freeing it can be. Talking about free, I see myself as a free spirit that believes in an unconventional lifestyle. I find myself going against the grain most of the times, not to rebel, but because it feels right to stay true to my unique and authentic self. It takes courage, and you often stand alone, but if you find a way, you soon realize that it is the only way to not lose who you are.
My past wasn’t easy and I come from a life that didn’t always give me the opportunity to be heard. Few related and even fewer cared to take the time. But now I believe that the past is history, the future hasn’t happened and the “NOW” is truly all we ever have. In the end I realize that we all have a story to tell, and we all seek to be understood. We all yearn to be heard, to be accepted, and to find our spot in life. We try hard to fit in, some to the point of acting out of character, playing by the rules of what we think society expects of us. Until we wake one day, feeling empty and lost, with our life passing right in front of us. It’s never too late to change your stars, and it was my toughest moments, who turned out to be my greatest teachers.
They say that the stars can’t shine without darkness, and it was darkness who has shown me the light.
It took a series of (un)fortunate events, to learn to glow through the pain, to learn how to dance in the rain. I believe in Magic and wonder, and the pot of gold at the end of the rainbow. As an empath this old soul often feels a little too much, but I wouldn’t have it any other way.
Today, I am here to tell my story because I believe that it can help others. It is my hope to bring inspiration and strengths to you, while showing you that it can be done. I know you are out there, and I know you are suffering in silence. I am here to tell you that you are not alone, and your voice is being heard loud and clear. Hang on and be strong, transformation is yours. 
In light and love....Rhapsody Bohème 💙🦋

37 thoughts on “A future in the balance

  1. Arthritis is no fun, I know. How are you feeling now? Did you get new answers, as we will read about in a following post? You made me curious, Rhapsody.
    I’m awaiting to see a new Rheumatologist too and I do have some knowledge, but nothing about, what is going to happen in short time.
    We need to embrace every day and be thankful to get the day and maybe also to our body for the days, when they are working well.

    Liked by 3 people

    1. Mmmmh yeah you knew, there will be the follow up post about the results and what is going on. Sorry to leave everyone hanging, just wanted to break it down and didn’t have enough time to write it all. Hope to finish tonight for a scheduled post tomorrow. It might have two more parts to it and I hope it might bring you some insight. Everybody is different and ultimately we have to decide for ourselves what treatment is best. Best wishes as always to you my dear friend. Hugs

      Liked by 3 people

    2. Thank you, Irene, for your care and comment here. 🙂

      RhapsodyBoheme, would you consider stem cell therapy and/or gene therapy if either or both were to become available in the future to treat or cure arthritis?

      Liked by 2 people

      1. I wouldn’t say no but of course would need more research to understand the pros and cons. I still feel that there are things I need to do such as lifestyle changes that deem helpful and worthy. Interesting question for sure to consider.

        Liked by 1 person

  2. My mum has Arthritis and I think she need to give this a read. She always brushes it off, I know she’s in pain. I think she’d benefit from seeing a specialist too.

    Liked by 2 people

    1. Hi Ella, what type of arthritis does your Mum have? The symptoms and treatment can be different from person to person and a one does not fit all. I’m fixing to write two more installments to my topic and share what I decided. Stay tuned and best wishes my dear. It’s an ugly disease.

      Liked by 2 people

      1. I think it’s Rheumatoid Arthritis, I’m not too sure. I know my grandad I never met had the condition. Her hands have been really affected because she’s done a lot of DIY over the years. It’s age related I think.

        Liked by 2 people

      2. If it’s rheumatoid arthritis then it is an autoimmune disorder and her immune system is attacking her joints. It’s a different form of arthritis and this one is not age related. Best wishes for your Mom and many painfree moments. Hugs

        Liked by 1 person

      3. I think it is different from that. Like I said my mum doesn’t really tallk about it with me. Thank you very much, wishing you all the best on your journey too, glad I can follow it!

        Liked by 1 person

  3. I have several friends with arthritis, not RA however. I taught immunology for 10 years and have followed the research-there is so much more they need to know about this AID. Sorry you have to bear this!! Hope you are doing well right now 🙂

    Liked by 2 people

    1. I believe you hit the nail on the head and there is so much left to research. I feel like an experiment each time and I just can’t get over the side affects of the current treatments. Giving up one to fix the other is just not a good enough option for me and I might as well not bother at all as long as I can somewhat function.

      Liked by 1 person

  4. I can’t even imagine what that must be like. I wish I could take the pain away. I know one thing for sure. If anyone could possibly bring balance to a horrible situation, it is you. You have the ability to cherish the days when the pain isn’t quite as bad. Not many people in your shoes could do that. You have many other attributes that allow you to live life to the fullest. Those are a lot of words to say that you are one special woman! 🐉 ❤️ 🐉 ❤️ 🐉

    Liked by 1 person

    1. Thank you so much for your kind word dear Dragon Keeper. You leave me speechless and I’m touched. It’s tough at times and not all days are created equal for me, but like you said you learn to balance it and try to make the best out of it. And as far as being a special woman, well I would tell you that it takes one to know one and you are extraordinary my dear. Much love to you and a special hug. Xo 💙🦋

      Liked by 1 person

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