A Shift In Focus Upon A Rare Disease Diagnosis

To say that it’s been a while since I posted here is an understatement. But after getting a life-changing diagnosis, I’ve had to step back and invest my time to take care of my own health. It’s been tough and is a lifelong journey, but I’m at the point where I feel comfortable sharing the details of my circumstances.

After 2+ years of shuttling between specialists and getting countless tests done, I was diagnosed with a rare autoimmune blood disease called cold agglutinin disease (CAD) in early 2020 after I moved to Arizona to be with my husband. I had always struggled with chronic illness so it wasn’t difficult to accept at first.

Then, I learned that the disease I have would be lifelong because there was no cure and because it was such a rare disease, treatments consisted of medication or infusions of drugs that had been proven to help with autoimmune diseases but not for my particular diagnosis. Not only that, I had to face the reality that it would impact my day-to-day life immensely and that was not something I was expecting.

Long story short, I had to and continue to get my blood drawn weekly, attend doctor appointments, work to find different ways so that I don’t gain unnecessary extra weight to my already water weight-inducing medication (prednisone), be intentional about what I eat and how to balance exercising. However, with help from my support group and others, I’ve finally learned and continue to set healthy boundaries in these areas.

Though CAD is not life-threatening, it is life-changing. I will never be able to exercise as intensely as I used to and I will not be able to eat cold foods or have cold drinks (related to CAD). It has been about a year since I had my last Dairy Queen or iced drink, and I miss it so much! But, there’s hope and with my disease somewhat under control, I’m better able to help my readers and any clients I may have.

I created this website to share nutrition and wellness information that I’ve learned as a consultant and a human being, so that you can have a flourishing and joy-filled life, and I will not stop doing that! However, upon recent events and reflections, I’ve decided that I will be also incorporating posts that are relevant to those with rare diseases, chronic illnesses, and autoimmune diseases.

What I will not be doing is to ignore your symptoms, to not be compliant with your doctor appointments, to stop taking medication, or to change your nutrition just because you have a chronic or autoimmune disease. I have gotten some well-intentioned but rude advice in regards to that, and my goal and desire is to motivate, empower, and encourage you with facts and by sharing my experience, not to shame you for your choices or lifestyle.

I hope that this shift or alteration in focus regarding living a joy-filled life will promote hope and inspire or motivate you to keep pursuing your dreams and to cultivate your relationships, in spite of your diagnosis or health circumstances. While I won’t be posting often, I’m aiming to produce pieces that will help you thrive and live a joy-filled life!

*Note: I am currently taking a limited number of appointments for a free consultation to work with me for any part of your life: nutrition, wellness, lifestyle, relationships. You can email me at sj.joyfilledliving@gmail.com if you are interested.

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2 thoughts on “A Shift In Focus Upon A Rare Disease Diagnosis

  1. Good luck with your blog and with your new chronic-illness journey.
    The road It’s going to be bumpy and complicated at times, but with resilience you will be able to overcome difficult times ahead!
    I have MS and I had to make many life adjustments after the diagnosis but I’m starting to accept it.

    If you like, follow my blog, I’m new in the blogsphere!

    Like

    1. Thank you for your encouraging comment! Yes, I agree and so far, I’ve found that there’s always something new that I learn or have to endure and use resilience to get through. I hope that your journey with M.S. in spite of the life adjustments required, will be one filled with more encouragement and support than discouragement ๐Ÿ™‚ It takes time and it’s a daily struggle, but we will prevail!

      Like

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