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| (my niece Ashley, sister Elizabeth, mother Jean, sister Stephanie, and me) |
I have heard from a couple of you this last week who were concerned that you had not seen an update from me in while. I am very touched by your thoughts. Rest assured, this hard headed, ornery gal is still making a dent. I have been sick and experiencing some pain for a few months. We began running tests about a month ago and I have been waiting for full results before I explained. See...that is how I roll. The control freak in me likes to wait until I have answers and share them when and where I think it is best so that I can protect everyone and shape how they react. Extreme guilt consumes me when I see people worry or hurt over me. I know I am not alone...in fact, I come by it naturally. As a Daddy's girl, I will ask my father how he is doing and he tells me he's fine. He asks how I am doing, and I tell him I am fine...then we both go ask my mother for the real story!
Last night, I was with a group of friends driving through a fun place called Santa's Ranch out on Interstate 35 near San Marcos. They have set up Christmas scenes with millions of lights! Even the Grinch in me enjoyed the experience, but while we were waiting to get in the gate, I received an email from a young woman that touched my heart. She had heard my story and reached out because she is experiencing convulsions, tremors, and many other symptoms everyday that I share. She is not getting proper treatment because she lives in a small town and the doctors are not yet accepting of the Hashimoto's Encephalopathy diagnosis. She has had to quit work and her husband is filling the role of caregiver. This blog may have started as a sounding board, but I am proud that it is spreading the word about this disease so that treatment and support of patients will improve.
Here is what I have learned and continue to remind myself of everyday. As HE patients, we don't always have control over the tremors, convulsions, or motor skills. With depression, anxiety, and irritability being chief symptoms of this disease, we don't even have control over our emotions. We will go through all of the stages of grief when diagnosed: denial, anger, guilt...heck, I experience those three daily! Our loved ones will, too. The real fun is when you are having a bad day and this triggers a whirlwind of emotions in your usually supportive loved one. Everyone is feeling terrible, we treat each other in a way that is less than graceful, and it turns into a great big pity party palousa! It happens...just don't let it last long. As a patient, we are blessed by those who stick around and bless us with their comfort, love, and support. Not everyone is built to withstand the load, so celebrate those who choose to share this journey with you. If you feel alone...know that you are not. Email me anytime and I am here to answer questions and walk with you. If you are a loved one of someone with HE...thank you! There are days that will be hard, but you make a difference that can't be measured.
