Complicated Mother’s Day

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Mother’s Day always creates such a barrage of mixed emotions for me. There was a lot of trauma, abuse, mental illness, and foolish decisions that marked my childhood. My mother was far from a perfect parent. Luckily, she does admit to that and seems to be really trying to be a better person now, but being around her always triggers so many memories, thoughts, and feelings – some good, some bad, some funny, and some tragic.

I think part of the issue is that my brain has a tough time seeing how she acts towards me now and reconciling it with memories of how my sister and I were treated while growing up. I do believe in forgiveness (within reason), and I do love my mother, but I doubt there will ever be a day in her company that doesn’t create confusion for me internally.

I write this post today to recognize those of us who struggle on Mother’s Day to even know how to feel…

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Photo Art from the Children’s Hospital

Yesterday I went to the local children’s hospital to see their genetic specialist for Ehlers Danlos testing. While there, I got bored and took a couple photos of a set of sculptures I liked:

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My favorite is the feet one. I love odd angles and close ups of objects, because it shows details most people don’t notice. I did add a bit of a filter to the first picture to make the colors stand out more from the darker aspects.

As for the visit with the geneticist, it went fine. They did a mouth swab to test my DNA, so no pain involved. The geneticist is pretty sure I have hEDS (hypermobile Ehlers Danlos) since I meet all the criteria, although he wanted to rule out other kinds like vascular and classical EDS, hence the test. I just hope it isn’t vascular, as the average lifespan of someone with vascular EDS is only 48.

 

I Miss Having Kids Around

Today my husband and I went to go see one of his students dance in a special recital:

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Seeing all the cute little kids dressed up in their costumes and dancing made me really miss having kids around. I used to be almost constantly surrounded by kids between foster parenting, volunteering with the kids at our old church, and working in the school system as a teacher’s assistant/aide. My favorite age of kids to work with were always the younger ones, 3-4 years old to around 6 or 7, although I bonded well with kids of almost any age.

At this point, I don’t know if my physical/mental health will ever consistently improve to the point that I can do those things again, but I miss them. I am thankful for the experiences and memories though.

EEG Update & Going Gluten-Free

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Had my EEG yesterday morning. It wasn’t too bad. The flashing strobe light part was almost kind of like what I imagine doing psychedelic drugs would be like – all the swirling lights and patterns…it was kind of crazy. I was supposed to nap for like 15 minutes or so, but just couldn’t fall asleep. I’m hoping I won’t have to do the home sleep study, but I guess we’ll see what the doctor thinks. The gel they put on my hair to keep the electrodes connected drove me crazy, so I had to come right home and wash it out.

Other than that, not much exciting is going on. I am attempting to embrace a mostly gluten-free diet in hopes that it helps my digestive and chronic inflammatory issues, but it is hard because many of my favorite foods (pasta, pizza, bread, cereal, cookies, etc.) have to be eliminated or replaced with gluten-free substitutes which don’t always taste as good or have the same texture. As an autistic gal, food texture matters A LOT to me and it takes a good long while for me to get used to changes. Thank goodness a few mainstream cereals are already gluten free (like Cheerios, Lucky Charms, most Chex varieties, Fruity/Cocoa Pebbles, and a few more).

My mood today is rather blah. Just not feeling much of anything, except tired.

New Painting: Shiny Happy People

While I was painting this acrylic picture last night, trying to capture the burgeoning depression I could feel weighing on me, the REM song Shiny Happy People came on the satellite channel I was listening to. I felt that song perfectly captured how I was feeling, as I always felt it was a rather tongue-in-cheek, mockery of a song. I decided to name the artwork after the song, so here is my version of Shiny Happy People:

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Check out all my art currently for sale on my ebay store.

After the Battle is Over…

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I’m feeling a bit like this weird-looking guy I sketched the other day. Dazed, confused, and like I’ve been through the wringer. I am so very happy I won my SSDI case, but I’m almost a little in shock and kind of feeling like “what do I do now”? After fighting for something for so long, it is kind of weird to actually get it and have the fight over. I’m not complaining at all, I am SO very thankful, but my brain just needs some time to adjust and move from the mentality of scarcity and fear to one of feeling more secure.

(Find my art for sale on my Ebay store.)

I Won My SSDI Case!!!

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Here is what I wrote on my Facebook page today, I think it pretty much sums it all up:

Six long years, and I finally won my SSDI case! Fully favorable! Feel like crying and screaming. Been sick and in pain so long, sometimes I wanted to give up hope and die, but glad I hung in there.

All those people who doubted me or thought I was just being “lazy” or “dramatic” can kiss my ass. To all those who have showed love, empathy, and encouragement, thank you so much for helping to keep me alive and fighting.

My fellow bloggers here on WordPress definitely fall into the second category of supportive, encouraging people, so thank you all so much!!!

By the way, the decision was just made yesterday and my lawyer was the one who called and told me, so it will still be a little while before I get the back pay or monthly payments started, but I’m on my way!

Neurologist Visit Update

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Yesterday I saw my new neurologist for the first time to try to figure out why I am suddenly having so many migraines. I must say the visit didn’t start out well. For one thing, they only see new patients first thing in the morning, and I am NOT a morning person. However, I did make it there on time at 9am in the morning, but then I ended up waiting to see the doctor until after 11am!!! Needless to say, I was not a happy camper.

The doctor seemed rather grumpy when he finally came in too. Maybe he was having a bad morning (I would think so with being that behind schedule for a specialist), but after waiting two hours, dealing with a grumpy doctor was not ideal. I will say that even though he was a bit grumpy, he was thorough at least. He asked tons of questions and investigated all the leads I could provide, even bothering to request additional medical records and taking a second look at my imaging tests that have already been done.

By the end of the visit, he had decided to send me for an EEG to check for possible mini strokes or seizures, and another head/neck MRI to see if my cervical issues have worsened in the past two years or if anything else has changed. He also wants me to be tested for Meniere’s disease, an inner ear disorder that may be contributing to my vertigo, ear pain/pressure, and tinnitus.

He noted that my neck was constantly spasming, so he switched me to another muscle relaxer and also put me on Topamax to try to help prevent the migraines (we are hoping it might help my fibro pain some too). I guess we’ll see how it goes from there.