Posted in Chronic illness, Health

Red Pill – Blue Pill…my bout with RA

If you are just joining this story, you might need insight of how we got to this point. You can get up to speed, here, here and here before reading this. (In order of posts)

For the most part I left the rheumatologist office feeling high with an immense relief. No permanent joint damage was more news than I had expected to hear. As I said before, I think I prepared for the worst, and now I felt the burden falling off of me like a heavy weight that had forced me to my knees. There was a bounce in my step, a light footedness as I walked to the car and felt as if I was given a second chance at life. I looked to the heavens, winked at my guardian angel that must have worked overtime to protect me over all these years, and life was good at that moment. Life was very good and I couldn’t wait to share the news. One of the hardest things was not to tell you here on the blog, as I knew you needed the insight of how this all came to be first in order to understand.

The feeling lasted a few days until the insurance battle began and so said insurance didn’t want to cover medication X which was the pill form of the harsh drugs that were suppose to prevent the further damage, that mind you, never happened over the past eleven years. I had taken a few of the pills from the trial version the nurse practitioner had given me. The bottle was meant to hold me over until the refills kicked in and she had warned me that there might be problems filling the medication she had prescribed. I didn’t understand at the time, but know now that it is all about the money and the kick backs from the pharmaceutical companies. Two weeks later I received the notification from the pharmacy that medication X was not to be covered and that I needed to try medication Y first which were the syringe shots into the stomach or upper thigh. Only if I wouldn’t tolerate medication Y would there be a slight chance to switch back to medicationX regardless of that it worked for me already. I was to be put through the test to see if my body could handle it with little regard of the side effects. I wasn’t a fan at all and two appeals were filed from my doctor without success. Medication Y it would be or nothing at all.

Health wise I felt decent and I started to spread the pills out. First every other day and then in even bigger gaps. By now I haven’t taken any of medication X in probably 2-3 weeks, maybe even longer and I’m still holding. Medication Y was approved and the first shots arrived in November and another set of two just today. They come in a month long supply, one shot every two weeks. Both medications have about the same side effects such as cancers, heart failure, sudden death, infections, just to name a few, and believe me, the list goes on. I had already swallowed a few from medications X, but what got to me and did me in was the “Sharps container” that came with medication Y for the disposal of the syringes. The bio hazard warning on the box in-specific was what was especially disturbing to me. All I could visualize was that I was going to inject myself with bio hazardous waste. I know there is more to it, but I can’t go forward and at the moment the RA is back to being untreated.

I rescheduled my follow up appointment from December to February of next year and was hoping to have more clues by then. I’m not sure what’s ahead and if service might be denied completely since I’m not a good patient at this point and have gone against doctor’s orders. Luckily I am at a point where the pain levels are controllable, but what if it changes back again? I don’t really have the answers right now, I just know that the risks of the hardcore drugs to maybe remedy one problem are not worth to jeopardize so many other things. I feel with certainty that this is not my answer and I don’t care to slap a bandaid onto the symptoms. I want to treat the cause, but I understand that there is no money to be made off of me this way. So why would and should someone care? I’m not sure what the follow up visit will look like. One thing is different this winter, and it has been the least painful season ever since the onset of RA. The winters are usually worse and although there is still pain, it’s nowhere close to what I’m used to. I can’t help but wonder why this is. Am I just lucky and am I just catching a break? Have my prayers and yours been heard, or could it just maybe be that I’m starting to know enough about what I’m dealing with that there is a form of remission? That I’m putting some things into effect that are making a difference? I know it’s a big one, right….but I always said it “I’m a dreamer and without dreams there is no hope and without hope there are no miracles”. I believe that anything is possible…

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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 💙🦋

4 thoughts on “Red Pill – Blue Pill…my bout with RA

    1. Hi D. Merry Christmas first of all and a giant hug for you. I hope you had a beautiful holiday and it was filled with special moments. The kind of special moments you always show me with your kindness and big heart. So when you say that you wish you could do more, I’m not sure what you a talking about because you are doing it all and I hope you know what difference you make for me. Thank you from the bottom of my heart. Much love to you Super D. Hugs

      Liked by 1 person

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