So Here It Is

The older my kids get, the more they teach me. This week, one of my kids told me the new thing on social media, especially Instagram, is to bring it back to how it used to be. Of course, I’m completely intrigued and press on.
Well Mom…it used to be fun. It used to be real. Now “people” …
Wait, what people?
Your generation…
Hmmm…go on.
Ok, even the younger people but everyone’s so caught up in perfecting how they want their pictures and feed to look that it’s not fun anymore. So the younger generation are making it fun again.
Completely sucked in now and needing more info…
How is it more fun NOW?
The new trend is to post imperfect pictures and make it messy again!
Then I guess my feed is ahead of the game because my pictures are far from perfect and my feed is, well, kinda messy. So I’m hip with the yutes.
Don’t get ahead of yourself mom!
Yeah, yeah, yeah…

I’ll never be as cool as the teens! They are funny and so honest. I do love the perspective from our kids, most of the time. It’s perfect timing for the New Year. My goal is to open myself up and really allow people to “SEE” me. I can tell you, I have put so much pressure on myself and it truly takes joy away from it all. I love to create art in just about any medium I have available. I also love to write.

I took a break from blogging because I was questioning my authenticity. However, I do love telling the crazy stories from my childhood but at this point in time, I want and need more authenticity. Who am I right at this moment? I’m someone who questions every move I make with this endeavor of art and posting and blogging, even parenting. I started creating small pieces of mixed media art in 2013. It was collage-like art on upcycled wood, very whimsical and fun. I sold a lot of art and was having a blast. Then I began struggling in my personal life with some health issues. I began doctor hopping trying to understand why I was feeling like something was not right. It was my memory.

The first sign was driving to the Pediatrician with my 3rd daughter. This is a facility I’ve been to a gazillion times over the course of 13 years and three children. Halfway there, sitting at a traffic light…I realized I don’t know where it is or how to get there. All I could come up with was…it’s over there to the left. I drove around for 30 minutes in that “over there” area. I weaved in and out of blocks, I knew it was by the hospital. There had been significant construction which had changed the landscape but the doctors office was exactly the same. I looped the blocks from the opposite direction and FINALLY recognized the building from the back side. It was daunting.

I made an appointment with my doctor. He ordered an MRI and expecting to hear I had a brain tumor, I was told “You’re healthier than you think you are!” Great? I guess? Now what? Am I overstimulated, am I too stressed…I’m a mom running her own business…trying to make ends meet, of course I’m too stressed. Isn’t everyone? I don’t have time to feel sorry for myself, so grab the dang bootstraps and get moving sister. Life continued on and my memory worsened. When I saw people I knew very well, I couldn’t come up with their names. I used to be a master at remembering names. People I barely knew, I would pride myself on remembering their names. I began to doctor hop, explaining my situation. They all told me I was just fine. I agreed, nothing specific seemed wrong but something definitely was NOT RIGHT! Something is going on with my body. I fell into a depression and buried myself in cute, little whimsy art.

I volunteered to do the decor for my kids school auction. It is a ton of work and a great cause. This was my 3rd time doing it. I got this. No I don’t “got” this. By the night of the auction, I became very sick from pulling all nighters creating decorations for every nook and cranny of the school. Transforming it into a land of make believe! Well, I couldn’t recover. Another visit to my doctor and I was told I was prediabetic. Say Wha??? I devoured the internet. This didn’t make sense. My grandfather was diabetic…so maybe. I was losing weight so rapidly, my clothes were falling off. I looked very sickly. One of my close friends said “Are you eating, we’re really worried about you”. I laughed at this statement. I carried so many snacks in my purse like a little old lady. I was eating protein every 30 minutes because my body would have vertigo episodes so extreme I would collapse to the floor and start vomiting. I can promise I’m eating SOOO MUCH FOOD but protein was the key for sustainability!!!

Thanks to google, I realized I needed to be with a Rheumatologist. So, there is a back story and I’ll save it for another time. The short version, I have a Rheumy I used for all my pregnancies. This is because I have a blood disorder. Basically, my blood is too thick and I’m high risk for blood clots. Of course, I had to wait several months because it had been longer than 3 years since I had seen her sooo I’m considered a new patient. By the time my appointment came, my condition was extreme. I was losing my hair in volumes of pulling a small rat out of the shower drain, still couldn’t keep weight on, fevers everyday, extreme pain all over my body, extreme, extreme fatigue…like my body was made of lead. I was so tired. There were many more symptoms. By the way, excessive crying should be a symptom. I cried all the dang time. In private of course because remember, there was nothing wrong with me! With bloodwork, my results came back as Lupus. Yep, there it is. I had 10 of the 12 symptoms (11 of 13 if crying counts). It was so obvious. How did FOUR different doctors miss this? The disease of Masks. Ugh. Obvious if you knew where the needle in the haystack was. I began medication right away. It took two years to stabilize my body to the place I was before, including my memory. I lie…I’ll never be where I was before but it’s better than pre-diagnosis and hey, my memory isn’t great still so I pretend I’m as good as new. Denial. Unfortunately, nothing will ever be what it was before. And, I apologize now, cuz I probably won’t be able to come up with your name when I see you. I have mostly good days. Two days ago I was up early and to bed late applying for different art opportunities. Yesterday, I paid dearly. Extreme fatigue. I could barely speak throughout the day and especially evening. Today, is better.

So here it is, I do my best not to do too much, like staying up late…ridiculous that it kicks my bootie this easily. I apologize if I turn down invitations or don’t show up to gatherings I promised I would attend. Trust me I want to be there. I will beat myself up over this guilt too…for days. I have become selfish with my down time, not completely by choice but necessity. I’m done making excuses to hide my lupus fatigue. I am going to own it. Being I’m “owning it”, let’s go completely authentic. Currently, I have a very successful business doing in-home childcare. This has been my main gig for 20 years. I cannot believe that statement but it’s true. No more hiding if I’m keeping it real and authentic, I gotta pay those bills. Art is my side hustle and I hope to eventually transition to art full time. Until then I keep the dream alive here on my blog!

I have learned most people don’t know anything about Lupus. It’s the disease of mystery. The logo is a “?”. Nicknamed “The disease of masks” and there is no cure and the medication is only temporary being it has side effects long term. One of those is loss of sight. Eeek. Maybe it’s coincidence but my vision is declining rapidly. Super awesome. I found I’ve started to hide my illness. I was so sick prior to getting answers and have spent my recovery extremely paranoid. Any twitch wigged me out and became worried I was going to spiral down the rabbit hole again. I spoke openly about my symptoms and my diagnosis. It was not well received from most. It’s tricky to navigate. I don’t want to be a buzzkill to anyone and I realize it wasn’t personal. We are at a point in our life that we’re facing a lot of heavy things. We need time together to blow off steam. Let loose, get away from the heavy. This past year my paranoia was at an all time high. I had an MRI and was scared to death. Nothing like meeting that deductible in one sitting. Oy. Turns out, I’m healthier than I think I am. So I became very ticked off at Lupus. Unbeknownst to me, I’ve gone through all the steps of grieving. I was so angry with my paranoia and decided I no longer have Lupus. This is an unacceptable disease. Because that’s realistic, right? I will continue my meds (because the reality check of missing a dose happens within 6 hours-Yikes) but I refuse to live my life paranoid any further. I’m grabbing my life with a strong death-hold grip. I feel amazing, until I don’t. It’s a somewhat quick recovery of rest. But this year I’m going to continue reaching out into the art world and being authentic. Lupus is part of me and I’m not going to hide it.

Last January, I had a dream of a painting on canvas and this began the journey of creating again. I was too sick to create art for the two years of recovery. Painting on large canvases became therapy for me and the main reason I’m in a solid place mentally. Not sure how I feel about putting “it” all out there. I realize being authentic is the new trend, I know I’m still not hip like those teens and that’s okay. I’m just thrilled to have the ability to be this healthy, finally. Peace to each of you in this New Year. Thank you for your support throughout my journey. Here’s a toast my brother and I did everytime we had a drink together. Cheers to beers and all the years we spend together!


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