• Sarah Marcina

Awareness

I don't get real on my blog, today I am. Perhaps your impression of me is I live a quilting dream world. I am. I have so many aspirations and dreams of where I want my career to go including published in magazines, a book written, and many new and exciting patterns. Those are just a few dreams.


Here's the truth though... it is only dreams. I live with chronic illness. My daily schedule is always up in the air. I rarely commit to projects unless they are long term or an undefined deadline. My yearly mystery quilt is planned, made and written months in advanced, including the blog post. I make my life work for me despite challenges. I don't have the success I desire, but I am more successful than I could be.


At the age of nine I was diagnosed with epilepsy. For those who know much about the disease you may be thinking it's easy to control with medication and people can lead a normal life. That is true for a lot of people. I'm just not one of them. You may be thinking get a second (third & fourth) opinion. I have. My current neurologist is one of the best in the country. She also teaches at a highly regarded college and the neurology department takes part in many new drug studies of which I have been apart of. You may be thinking have you tried this medication or that medication. More than likely the answer is yes. Have you considered surgery? Yes, it is inoperable. Do you know what is the cause? Yes, there is a family history. Do you know triggers? This is where the awareness comes into play.


With many (most) seizure medications one of the side effects is weight gain. I have struggled with this side effect with nearly all of the medicines. Recently I have began the process of exploring medical intervention options... goodness that was hard to say. Do you know how embarrassing that is to admit? On this new journey I feel more unhealthy than ever. The nutritionist want me to eat five times a day including adding carbs! This has been a huge struggle. I'm actually have to buy processed foods loaded with carbs but I am trusting the professionals. That's a hard one because I buy organic and unprocessed foods. I grow a garden then can and freeze the veggies. If my garden fails to produce, I buy from farmers markets and then do the same. Most of my meat is farm fresh. Primarily I have access to farm fresh eggs. All sounds healthy, right? Yet this healthy isn't working for me. I need a professionals help. This is the first part of my awareness.


Part of the process of exploration is having to have a psychologist evaluation before considering weight loss assistance. Oddly enough, he shined a little light on a trigger of seizures. Even through the expertise of my neurologist I hadn't pinpointed this... getting overly hot. Right now it is in the upper 80s. I'm actually writing this while I cool off. I've been working in my garden and still have more to do. My old normal was to go out work until it was all done then come in take a warm shower. This is changing. Now I go work outside until one portion is done, come in have a snack or meal while I cool off then go back outside. Also, gone are the days of a nice hot shower! Change is hard. Becoming aware is hard. Getting hot was never a reason to stop working nor was getting tired. Now it is. I feel like my life has slowed down and not because of COVID-19.


I'm not sure my overall point in writing this. Sometimes words just come to mind and I journal. Today I decided to journal here. Why not? After all this is "The Quilted Diary." I don't know when I will open up the next time. I don't let my disease define me so I really don't talk about it much. Anyway, I have cooled off now and I have more work awaiting.


I hope you have a wonderful and productive rest of the day!



Just a little peak at my garden. This was from about a month ago.



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