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:
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.
Today my husband and I went to go see one of his students dance in a special recital:
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.
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.
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.)
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!
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.
Over the weekend my husband and I visited Indianapolis to see the Star Trek exhibit at the Indianapolis Children’s Museum. My husband was in heaven lol. I was there. I did find a few fun things to concentrate on though.
I annoyed my husband by sitting in the captain’s chair like this:
My personal favorite in the exhibit was this painting of Data’s cat from The Next Generation, I would hang this in my house:
My husband got assimilated and beamed up (along with a little friend):
I did get to ride the museum’s carousel (one of my favorite things to do at any museum, zoo, or park). Unfortunately, I threw my hip out climbing onto it. I think from now on I may need to sit on the little benches on the carousel like all the other old, broken down bodies:
I also got a photo op at Candyland:
Now I am back home, exhausted, sore, and will probably need a few days to recuperate.
I’ve started livestreaming on my YouTube channel just for something to do and another way to connect with people. I’m doing most of the streams on my personal channel, rather than my toys and books channel. My personal channel has a lot less subs (around 200 compared to over 3,000), so if you are a YouTube watcher, please consider subbing to my channel! Here are a couple recent livestreams if you are interested:
The YouTube playback for the livestreams is a bit blurrier than normal vids, but I’m working on that! You probably want to watch them in the highest quality available to minimize blurriness.
I love the tv show House. This medical drama, based around the character of a doctor with Sherlock Holmes mystery solving abilities is often smart, informational, and amusingly ridiculous. The main character (House) is often a total asshole, but he is so lovably grumpy, enormously flawed, and irresistibly outrageous that I can’t help but like him.
Last night I finally caught their episode that features an Ehlers Danlos patient, an episode I had been looking forward to seeing for a while. Unfortunately, I was really disappointed with the portrayal. First off, very little of the episode actually had anything to do with the woman with Ehlers Danlos. It focused more upon her husband for the first half at least.
When she was finally introduced into the storyline, she was presented as someone with a horrible mental illness (hoarding), which a casual viewer could easily think was due to her forthcoming Ehlers Danlos diagnosis. The last thing those of us with EDS need is to be confused with mental illness conditions even more.
Also, the only symptoms that are even discussed to be related to EDS in the show (and thus lead to the official diagnosis) are the fact that the woman’s heart responded badly to some medication and she had suffered several miscarriages. That was it. Yes, EDS can contribute to miscarriages, but it is far from one of the hallmark symptoms of many EDS sufferers. Nothing was mentioned about hypermobility, chronic pain, dislocations, joint issues, gastrointestinal issues, autoimmune issues, bruising/scarring, loose skin, etc.
Overall, a very disappointing experience as a viewer and EDS patient.