010223 Update

Hello Dazzle! Thanks for coming and hanging out with me today, I’m glad that you are here. Today I just wanted to touch base and give a little update as to how things have been going in my life. Most of you already know that the last few years have been rather difficult for me. If I was to use one word to describe 2022, I would use tumultuous. It was a year that was filled with confusion and uncertainty. A year that has brought a great deal of change into my life. Some of that change has been really good and some has been really difficult. At the end of the year, in December, I took a leap of faith and I left bedside nursing to work full time as Zebra Pig. It has been about a month now. So, what has a month of full time as Zebra Pig been like?

Overall, I feel like there is still more uncertainty then I am generally comfortable with having in my life, but I am working on being more comfortable with that. After all, uncertainty is pretty much what life is all about. It is still too soon to know if all of this is sustainable for our income, but I am trying not to focus on that part right now. I am trying to pour all of my effort into the work of making Zebra Pig the best that I can so that I can give it the best chance of being everything that I dream of it becoming.

I want to create an online haven for those that feel unwanted or unloved in this world that so frequently shun those who are different. I want to offer a place where diversity is welcomed and celebrated as the best part of humanity. I believe that as a group we can support each other. We can make each other more resilient and more prepared to take on the daunting challenges that the world in presenting us every day. Social support is the single most important factor for having a good outcome when facing a stressor of any kind. I want to create a place that can offer people that social support.

There has been much to learn. One fun thing I learn is that my job title is Content Creator. Nice to know what to tell people I do for work! I have been working really hard to try to learn how to edit videos, but I am not yet ready to start posting anything within that skill set. I’ve started using thumb nails on the You Tube site. I think the over quality of the recordings for the streams, videos and pod cast have improved largely because we have better equipment but also because we are learning more about how to do those recordings. I’ve been struggling to wrap my head around search engine optimization so that I can better use tags and can create better titles. In general, I have spent a lot of time watching videos and reading to try to learn how to be a better Content Creator.

While I feel I have been putting in a lot of over time as Zebra Pig, I don’t feel as tired or over burdened doing this job as I did as a bed side nurse. I wake up and am excited to learn and am excited to engage with my audience. The Dazzle has been so amazing and I am very blessed to have all of you coming to my various social media accounts. You all have made being Zebra Pig an incredible job. I am so grateful for every single one of you. Each like, comment, share or other engagement was been so amazingly supportive. The best part has been being able to talk with all of you while on Twitch streaming.

There has been a great deal of emotional work that I need to do. I have only begun that journey. There is no telling how long it will take me to process everything that I am feeling and all the things that I have experienced while being a nurse. For now, I am just trying to give myself emotional space so that I can finally process all these emotions. I have been doing a lot of journaling to try to capture the themes and the essence of what is burdening me. As a result, there have been posts about nursing and the health care crisis. There will likely be more of those in the future as I continue to work through all of this. It will take time and I am struggling to be patient with myself.

Since transitioning to Zebra Pig full time, I feel like my chronic illness symptoms have been mostly better. I’ve been having less of everything and this has been so amazing. The reduction in my pain is incredible!. The thing that I have been continuing to struggle with the most has been the insomnia. That has not seen any improvement since leaving bedside nursing. In some ways, I feel like this might have gotten worse now that I am digging into and trying to process my trauma. While things are better, my chronic illnesses haven’t gone away and I got a reminder of that at the end of the month.

I had a migraine day 12/23 which was likely triggered by the holiday stress and the insomnia. Having inconsistent sleep has always been a trigger for my migraines which seriously sucks given how much I have always struggled with insomnia. Another migraine came in on 12/30 which was no surprise. Still the holiday season which is always a more stressful time for me. The social expectations are difficult for me to navigate and the extra spoons that I use often come at the price of flaring something up. Masking is often expected and a habit that I am not sure that I will ever be able to unlearn. But I have only had 3 migraines in December which is much improved compared to the 8 I had in November.

Since my dystonia is exacerbated by walking, my dystonia symptoms were always far worse on the days that I worked as compared to the days that I had off. Because of this, I decided to do a trial on no taking the Sinemet to see if I still needed it now that I am not working as a bedside nurse and spending all that time on my feet walking and standing. The result is that I do. Turns out that my baseline dystonia has gotten worse then it had been and I hadn’t been able to see that because of the medication. Without the medication I was having a lot of leg cramping and pain. But more concerning, I was having an increased difficulty with my swallowing. On 12/28 I had a mild dystonic storm that involved only my right side. It cause me to fall. It also resulted in my deciding to restart the Sinemet.

The medication holiday has resulted in me having a much better understanding of my dystonia. I now know that I am one of the people who have dystonia symptoms that progressively get worse over time. Yeah, that sucks, but it is good to know so that I can be prepared for it. It also informed me that the dysphagia that I have been experiencing for years is a part of my dystonia symptom set. That’s super important to know. It means that I don’t have focal dystonia. Having the dystonic storms, eye involvement and swallowing involvement changes my diagnosis to generalized dystonia. This doesn’t change the treatment, but it effects the way that I am monitoring my body for progressing symptoms. While the medication holiday resulted in a fall and dystonic symptoms that have me now feeling tired and aching every where I will still say that I am glad that I took the break from the medication. It provided me with important information about my condition.

One amazing benefit of working from home has been the amount of time that I have been able to spend with Misroch and Siriskulk. For those who don’t know: Misroch is my husband and Siriskulk is my daughter. I live with both of them. They are also both part of the Zebra Pig team. This means that most of the time that I am streaming, I am spending time with one or both of them. It has been really great to be able to have more time with them. Working with people that are mindful and supportive of my disabilities as been amazing and I wish that everyone had such supportive coworkers. The final team member is Stax who is a good friend of mind and is equally supportive. This alone has been an incredible shift in my working environment that I really needed.

Well, that’s about it for my rambling today. Thanks for coming and spending some time with me. If you like what you read, click on that like button. It really does help! Until we talk again, you take care of yourselves!

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