Howdy Hydrocephalus

Understanding my unique gyroscope


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Duckface & SJS

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Last Sunday morning I woke up with a duckface. My neck, face and lips were swollen, especially my lips. I had begun to taper on my prednisone, but apparently my body didn’t like that. I went to emergency and found out that my SJS (Stevens-Johnson Syndrome) was flaring.

I found out that I could wax & wane flaring symptoms for a long time. I not only had swelling, but my face started to get the blister rash again. Inside my mouth and tongue had blisters too. My hair is falling out in clumps & feels like dry horrid straw. I may have to get my hair cut short. Will not make any decisions like that just yet. I have not had really short hair since I was 22.

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These flair ups are nothing like before, but still a pain in the rearend.

Nothing like a good health scare to really put things back into perspective again. I had been tossing about what I want to be when “I get better” for the last year. Wasting healing energy and time fretting. I tossed retraining to be a teacher, art therapist, or reflexologist. I guess I thought re-educating would make my worth. I decided that baby steps are a wonderful thing and I will focus on hand reflexology and essential oils. I feel comfortable and happy with this decision.

The thought of post secondary training makes me stressed and anxious. Especially when I have trouble spelling words and I can’t even remember how to cite references. I think it would put too much pressure on me and my health would crap out again. I do not want this to happen again. I want to be healthy, strong and happy. I want the same for Chris and the boys. I spend time with my family and have life adventures rather than book adventures. There is so much on my bucket list and I plan to be a part of this world for a long time to come. Being happy is number One! It no longer professional title or the dollars one makes.

I need to take the time to get my energy back. I am still fighting with acceptance that I need two naps a day to look like I am a together person when people see me. I just need to build a bridge and get over it and accept that this may be the way it is for a while. And if I push too hard, I will begin to back paddle. I don’t want to back paddle anymore.

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