Back In The Saddle

I have not touched this blog since 2021. At that time, I was helping take care of my terminally ill dad, and dealing with my new diagnosis with a chronic illness called Ankylosing Spondylitis. I was in survival mode. I lost my dad on June 26th, 2022, and my world was shattered. I was able to stay with him the entire two weeks that he was home on hospice, and I held his hand as he took his last breath. He was there for my first breath, I was there for his last. Two weeks after I lost my dad, I lost my uncle Rocky.

I spent the remainder of 2022 and most of 2023 in a dissociative fog.

It has been a long road for me to get to the place where I am today. I am still not put back together, and I am not sure I ever will be. After the losses of 2022, I noticed a lot of changes happening with my body. My hair was falling out in clumps, leaving bald patches all over my head. Strange new symptoms began to pop up, and I was rapidly gaining weight, despite my attempt to stop it. I figured this was all due to the stress and grieving. I did check with my doctor regarding my physical symptoms, and I was unaware that was the beginning of another journey for me. After many tests and visits with specialists, I was diagnosed with Cushing’s Disease. Something in my body is producing too much of the hormone Cortisol, and is wreaking havoc on me. The additional stress of my current events was not the cause of this, but also was not making this any easier on my body. Fortunately, with the help of an amazing endocrinologist, I am getting my health back. I am taking a medication called Korlym that helps manage symptoms of my disease. I have lost 70 pounds. My hair is growing back. I am slowly coming out of my depressive fog.

But, with all this sudden change, my body feels foreign to me. I don’t trust my body, between my Ankylosing Spondylitis (an autoimmune disease) and my Cushing’s Disease. I am on 10 different medications that I have to take daily, not including supplements required to cover vitamin deficiencies. I have to inject myself with a biologic every two weeks to ward off progression of my AS. With my Cushing’s, I have a tumor somewhere in my body causing the hormonal imbalances, and am undergoing scans to try to locate it. I struggle with pain and debilitating fatigue. I have an incredible amount of guilt for not being able to do things that I once could. I can’t even stand while I cook or wash dishes, I had to get a stool and use that to save my back and energy. I’m only 35.

Entering 2024 with a broken heart, and a broken body. What a trip! The only thing not broken is my resolve. I know that things will change and that I will be able to adapt. I’m back on my feet and shaking the dust off of me. I am slowly getting back into my creative hobbies, and reading more books than ever before. We have plans for more family adventures this year, and I look forward to blogging about them!

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