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Embracing Life with Chronic Illness

There is a big difference between embracing life and simply going through the motions. One month after my first book came out, I could no longer hide what was happening to my body. The symptoms had gotten progressively worse since the release of my book.

(I’m convinced there is a connection, but I’ll save that for a future post.) Big D, the love of my life and my #1 fan, convinced me to go to the doctor and not give up until I had answers.

Embracing Life With Chronic Illness

Do not give up!

Armed with a laundry list of symptoms that included joint pain, morning stiffness, dizziness, balance issues, headaches, sleep challenges, fatigue, ringing in my ears, hot flashes and more, I met with my primary care doctor who referred me to multiple specialists.

And when the initial tests came back normal, the specialists referred me to other specialists. Being committed to embracing life, I pushed on. By early October, my symptoms exploded. The morning joint pain and stiffness had spread to my feet, my hips, my elbows, wrists, ankles, and back. And it was staying with me throughout the day. Gone were the afternoons free from pain and evenings where a night out meant dancing until the early morning hours. My headaches were becoming more frequent and intensely painful, and still, there were no answers.

To an outsider, I look healthy.

I wasn't and as much as I wanted to be embracing life, I was just going through the motions by now. After numerous tests, MRIs, X-Rays, CT scans, and more blood draws than I can count, more than four months later we finally had some answers. I needed shoulder surgery, my clavicle was bone-on-bone, and I had a fractured right first rib, although no one could explain how the fracture in this location could have possibly happened.

And there was more. A lot more.

When Big D and I initially talked about figuring out what was wrong with my health, I didn't want to consider it could be something without a cure, something that could impact the rest of my life, or God forbid, something that could shorten my life; but that is precisely what it is.

Everyone always worries about the Cancer diagnosis, and having watched both of my now deceased parents deal with cancer; it was something I had thought about many times. And since I'm adopted, and not biologically connected to my parents, my thoughts focused on treatment options should I find myself with a cancer diagnosis. I decided against chemotherapy as a treatment.

woman with arms wide open

Of course, I realize it's easy to make a decision when you don't have to and much more challenging to make the decision when you're facing a diagnosis.

I don't have cancer, and I am grateful.

My new diagnosis, however, forced me to face the same decision, as chemotherapeutic drugs are the recommended treatment for my condition.

Did. Not. See. That. Coming.

I have Rheumatoid Disease (RD). You've probably heard it called Rheumatoid Arthritis (RA), which is now the commonly used diagnostic term. It's unfortunate since arthritis is only one of many complications of this disease. RD/RA is an autoimmune disease that is systemic; meaning it impacts all the bodily systems from organs to joints and there is no cure.

I'm still learning about the disease and what it will mean for me. It’s scary and makes me sad, but I’m not alone. Millions, like me, maybe you, too, are dealing with chronic pain and more while silently living with this invisible disease.

Embracing life with chronic illness.

I've decided to share my journey here, with all of you. If there's one thing I've learned, it's the value of community. We all need to know we're not alone, we're not the only one, and we're not crazy either.

As to my decision on treating my disease with the recommended chemotherapeutic drugs… Interesting how things change when the decision is not based on a hypothetical situation.

I've decided to try the drugs.

I'd be so appreciative if you could send a little light and love my way.

How do you embrace life with chronic illness?

Embracing Life with Chronic Illness title over woman with arms wide open

Comments

  1. You are amazing & have the kahunas to not give up(which you probably wanted to do…many times). Keep your journey moving forward, even on the tough days. What might be the littlest step forward is just that, forward. Celebrate yourself! This was a great snapshot into your daily “issues” that you have with RA/RD. It’s also helpful for others sufferers to have a safe place to talk openly. For people like me that are not, it helps us get a glimpse into your life.

    • Thanks for being here and sharing your comments, Erika. So grateful to know sharing my experiences is helpful for a non-ill person, too!

  2. Looking forward to reading all your stuff here… newly diagnosed and seeking all the info and support I can… so glad to not be alone in this madness!

    • Jennifer, I am sorry we have to meet this way and I’m glad you found us. It sure helps to have others in our corner who understand what it’s like to live with RA! Xoxo

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