First off, I want to thank the person who made a supportive donation to my blog through Paypal today! I believe this is the second donation I’ve received that way and I really appreciate the support! If you are interested in ways to support me, please check out the Support My Blog page on this website.
Also, I got some good news today that I don’t have to do the second part of the MRI that went disastrously last week. That is such a relief. I was afraid if I did the rest of the MRI it would just trigger another migraine. The MRI results I did receive were pretty good, with no seeming worsening of my cervical issues! Thank goodness!
I did have to visit the GI doctor today and found out I need to have an endoscopy, which I am nervous about, but I realize it is important if they are to find out why I am having such horrible bouts of esophageal pain and difficulty swallowing. At least I will be sedated for the procedure and hopefully won’t feel or be aware of what they do. My appointment for that test isn’t until next month, so at least I get a little break from medical tests.
That headline is not an exaggeration. First off, my MRIs went bad. I had MRIs for my brain and neck scheduled last night, both with and without contrast. I didn’t even get to the contrast part because the first part gave me a migraine, triggered severe neck pain, and gave me a major panic attack. I was almost sobbing by the time they got ready to give me the contrast, so they sent me home.
I left feeling embarrassed for not being able to keep myself from crying in public yet again. I also felt feelings of failure as I couldn’t do something as simple as completing two MRIs. Now I have to contact the neurologist that ordered the tests and tell him I wasn’t able to make it through and see if he wants to make separate orders for the contrast part. So, I might have to go through it again soon.
Also, we ate at a local restaurant yesterday that served me some bloody chicken. I didn’t notice right away because the blood pooled beneath the chicken breast. Anyhow, last night I got really sick and had to sleep with a trashcan beside me. I took both Mylanta and Zofran and nothing helped the nausea. I suspect I might have gotten a little bit of food poisoning from the underdone chicken.
At least I’m not fighting down vomit anymore, but still feeling nauseated and sick. Understandably, all this has made my mood rather blah too. I just want to huddle under the covers and hide from reality right now.
The past few days have been rough. My back went out again, so my upper back and neck have been causing extreme pain again. I think the gluten free diet isn’t really helping much, as all the things I thought it was helping have suddenly flared up the last couple weeks. My GERD has been awful to the point I’ve had trouble swallowing again, the night sweats are back, and I seem to be having a widespread inflammation flare-up again.
I know I shouldn’t have put so much hope on the diet to solve all these issues, but I feel like I’m so desperate for something to make me better that I often put high expectations on each new treatment idea, hoping it will be “the one”. Of course, I probably need to accept that since I have Ehlers Danlos (a genetic connective tissue disorder), that nothing is probably going to be that cure-all I have been hoping to find.
How I wish that there was a cure to whatever is going on inside me. I often long for one of those scanners like they have on Star Trek that could easily pinpoint exactly what is going on and what the treatment should be without being invasive. I guess I was born too early for that. We might be headed that way technologically, but it is probably well off on the horizon.
Hello there! For a while I have been wanting to feature artwork by other artists, especially other outsider artists, here on my blog. First choice of artists would go to those who have autism, other disabilities (physical or mental), or are self-taught. I want to let the art speak for itself, as I normally do for my own art, so here is what I would need if you want to be featured and how to submit it:
- Up to 3 photos of your favorite or recent artworks you have created (good quality, high resolution photos preferred). Please include the name of each artwork, what medium was used to create it, and size if applicable.
- I don’t necessarily want to do whole interviews, as I want the art to be center stage, but if you wish to share if you are neurodivergent, self-taught, or suffer from one or more disabilities, feel free to notify me of that. You can also share a couple links where people can follow you or find more of your art.
- Email all this to Shojobeatgirl@live.com, with subject headline: Blog Art Feature.
I’m not sure how much response I will get to this offer, so it may take a while to be featured if I get a lot of entries. I hope to share a new artist every week or so.
Feel free to ask if you have any questions.
This hasn’t been a great week for me. I’ve been struggling with headaches, earaches, fatigue, and stomach issues physically, and then on top of that I’ve been rather depressed and lethargic. Last weekend we were supposed to go to a baby animals festival I always love, but I didn’t feel up to it either day. Tomorrow is my 16th wedding anniversary, but I don’t feel much like celebrating, even though I am very thankful for my wonderful husband.
We also found out that my husband’s health insurance through his work is going up $100 a month and that I might actually be dropped from the plan now that I have SSDI and can get Medicare. I’m not sure how that might affect my current healthcare and doctors. I really hate our healthcare system here in America.
I guess a couple of good things I can concentrate on are that I just hit over 2,000 Instagram followers, and am only 5 subscribers away from 1,000 followers here on WordPress! If you don’t follow me already, please help me reach that goal!!! I would be most grateful and it would make me smile.
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.)