It’s been almost 8 years since I was diagnosed with paraganglioma tumors. I didn’t write down a lot about what was happening while I went through the process of treating my paragangliomas. Much of what you’ll read in my blog is my best recollection of the years when my illness was at its worst. Between the years 2013 – 2015, I experienced so many things and I wish that I had documented more, but life was way too chaotic to focus on writing it down. I’m planning to have some of my stories retold by my husband, David. I’m creating a side section on my blog posts for his version of each story. His recollection of my journey is sometimes much more clear.
I hope that by digging deeper and remembering the trauma from my experience with SDHD that someone will realize they are not alone. My journey was extremely lonely and difficult. No doctor knew what to do with me and very few would even try to find an answer to help me. There were many times when I thought I was going to die and not be around for my family. I was 32 when this all became apparent. No one should have to fear that their life could be ending at 32.
My daughters were 4 years old and 9 months old at the beginning of my journey. Recalling the looks on their faces and the trauma they experienced while Mommy was sick still makes me feel horrible and well up with tears. My husband was (and still is) my superhero. He took care of all of us and worked full-time just to keep us afloat. More about my support throughout all this later.
8 years later, I have an official diagnosis and explanation of what I experienced. I went through 4 surgeries, 6 weeks of radiation, countless trips to the ER and I’ve tried very hard to move on. When you experience an illness as I have, one that no one can show sympathy for or explain, it really damages your faith in humanity. It has taken me several years to get to a point where I feel like I’m in a healthy mental place again and bringing up this issue is very hard. I have been in therapy, support groups, and counseling. Through it all, God has been at the center of my journey. All the glory goes to God for my healing and the strength to get through this. Without my faith, I would be nothing.