My name is Jamee and I am excited and very honored to be a guest here at Realitynibs and to be able to share with you a little bit about myself and my journey with chronic illness. This is my second year being a part of the Health Activist Writer’s Month Challenge with Wego Health. It is such an amazing community and I cannot emphasize enough how encouraging and empowering it is to be a part of the online health community. I feel more educated and aware of not only my own illnesses but other issues as well and how we can relate and support each other. To be able to share about your journey, both your triumphs and your struggles, and have someone say that they understand and can actually mean it, it means so much.
I started my journey with chronic illness almost ten years ago and have collected several diagnoses over the years including endometriosis, fibromyalgia, interstitial cystitis, Celiac disease, migraines, hypothyroid, and adhesion-related disorder. I will focus on my experience with endometriosis as it has had the biggest impact to my daily life. In efforts to put a face with the disease, I would love to share some things about myself as a person and as a patient!
3 things about Jamee as a person:
- I am a proud YPW (youth pastor’s wife). My husband and I met in college playing in a praise band together and we have been involved in ministry together ever since! We were married in 2005 and he is truly my best friend and biggest advocate. He has type 1 diabetes and is very passionate about being a health activist. He is the assistant director for a camp for young people with diabetes called Camp Carolina Trails. He can also play a mean guitar (he wrote the song I walked down the aisle to!).
- I am a proud mama to an almost 4 year old girl! We became a family through the miracle of adoption. It was a roller coaster experience but worth every minute! She loves Disney princesses, being outdoors, and chicken nuggets. Now that she is older, she is much more aware of my illnesses and has said that she wants to be a doctor when she grows up so that she can take care of my tummy (if the whole princess thing doesn’t work out).
- I love all things Disney. I would live there if I could! One of my favorite things about Disney is how accommodating it is for those with illness and disabilities. For our last trip, I was in a wheelchair and I was so impressed with how every cast member I encountered really went above and beyond to ensure that I had an enjoyable experience. I also can’t forget how awesome the selection of dining options there are for individuals with food allergies! I still dream about the gluten-free BBQ from the Flame Tree Grill at Animal Kingdom.
3 things about Jamee as a patient:
- I have had five surgeries directly related to endometriosis and one surgery as a result of complications of treating the disease. Last summer I had a total bowel obstruction caused by adhesions that resulted in emergency surgery. There is no cure for endometriosis and one of the common treatments is surgery to remove the diseased tissue, however, each surgery raises the risk of creating scar tissue and adhesions which can then cause a whole new set of issues. Excision surgery performed by a skilled surgeon who is very knowledgable of the disease will provide better and long-term pain relief.
- I had a total hysterectomy (removal of uterus, ovaries and cervix) at the age of 26 in order to try to control the disease but even without using hormone replacement therapy, the disease has continued to come back. There are so many in the medical field that will tout a hysterectomy as a “cure” for endometriosis but that is very far from the truth. While many patients are able to find relief after a hysterectomy, it is not a guarantee and comes with risks of its own. According to statistics, endometriosis remains a leading cause of chronic pelvic pain and infertility, and accounts for nearly half of the 600,000 hysterectomies performed annually.
- Endometriosis impacts every facet of my life. I struggle with crippling chronic pelvic and lower back pain and fatigue. Each of my diagnoses seem be intertwined. When one flares, the others seem to follow suit. There are some theories out there that suspect endometriosis may be auto-immune related which could explain why certain illnesses seem to present together. It is not a proven fact but I don’t think it’s a coincidence.
I think that everyone with chronic illness is able to both support one another and teach one another. So many symptoms, such as extreme fatigue, brain fog, and widespread pain and discomfort, seem to be common threads among illnesses so while each story is different and should be treated as such, we do have things in common that allow us to offer each other support and encouragement in ways that others outside of the community cannot. My motivation for being a health activist is to help others struggling with illness know that they are not alone and provide support and encouragement that they can still find hope and joy in life despite their illness.
Day 15 (April 15) – Sharing
- Comment! Pick someone else’s blog post and write a comment to them. Write that comment as your post for today and link back to them to let them know you were inspired.
- Participate in our guest post swap day. Email us (firstname.lastname@example.org) by April 8th to be paired and we’ll connect you with another Health Activist.