Sensory Sea-Turtle

I feel really bad doing this, but I’m going to have to put this blog on a hiatus. I guess it’s already been on a hiatus?? Let me explain

I’ve been dealing with major health bullshit since November, but since February things have changed for the worse and for the intense. I found out I’m allergic to NSAIDs through trial and error in treating back pain from a small slip I had in late February. Turns out it caused a major problem in my sacroiliac joint that’s been masked by the NSAIDs that I was taking.

I’ve been to the hospital in two separate occasions for the pain. The first time they prescribed me dilaudid. The second time they accused me of being an addict because I’m on dilaudid. Don’t even bother trying to think through that shitty logic.

Anyway I’ve been in excruciating pain for more than a month and haven’t slept because the pain gets 1000x worse at night.

I went to a pain specialist last week who injected stuff into my back and that brought the pain down to a manageable level. I’m dealing with medical professionals being like “THERE FIXED LET’s GET YOU OFF THOSE DRUGS LOLOLOLOL” but I still hurt.

So I need to not have to worry about this blog. I don’t know how long I’ll be dealing with this, so I don’t know when I’ll be back consistently. In the meantime I’ll turn off asks. If anyone wants to start their own SPD resource I would be happy to promote it! I just can’t deal with internet obligations right now.

Thank you all for being so understanding. I cherish all of you and I hope you all have good sensory days from here on out!

After 5 months of horrifying pain and dropping the final two classes of my double major, one doctor sent me for a nuclear bone scan to make sure I wasn't dealing with a bone problem.

Turns out I had stage 3B Hodgkin's Lymphoma, a blood cancer that affects young people.

I did 6 months of chemo every two weeks, and was declared in remission January 11, 2017.

Dealing with opioids and doctors was an absolute nightmare, especially because last month a pharmacologist told me about opioid hypermetabolizers. Going to try and get a genetic test to see if I'm one of them for certain. Basically when people take opioids orally, the liver turns all of that into morphine. In hypermetabolizers, only about 3% of the opioid turns into morphine. This is why to help my mouth pain during chemo (a sensory nightmare let me tell you!) I had to take 36mg of hydromorphone contin (the slow release stuff people usually OD on) to find any relief. For comparison, they were starting me on 2mg every 4 hours for the super excruciating back pain I was dealing with and were hesitant even about that which was 12mg a day. Fun thing about hypermetabolizers, with codeine people typically only process 10% of codeine into morphine, but hypermetabolizers process 100%. Lots of kids have died on codeine in the past because nobody knew they were hypermetabolizers. Doctors were so pushy about me getting off pain medicine, but the reality was that I wasn't actually getting much at all. This was awful for the months of not being able to sleep and screaming all night long because everyone was too reluctant to give me the help I needed. In the end I basically cold-turkey'd 36mg of Dilaudid daily and all I felt was a little hungover for a week, which was still a lot better of a feeling than what I felt going through chemo.

Anyway that's been some of the fun stuff I've been dealing with. The whole ordeal left me in not a really great place, and I don't think I'll be able to keep running this blog. It takes a lot of energy to help everyone and find resources reliably, and I just don't think I can handle that now or in the near future.

What I will do, though, is if I ever run into resources or things that people might be interested in I'll send them this way. I just won't be answering asks, creating content, posting user-made content, or anything that requires an active role.

Thanks for being so understanding and putting up with such a long hiatus. Sorry this news wasn't more positive.

One of my research assistants needs help with her senior thesis study. If you meet the requirements, please fill out the entire survey below! A lot of people have been exiting out after filling out the demographics only :(.

Dissociation in Autism Spectrum Disorders Research Survey How do individuals on the autism spectrum experience dissociation, and what increases their risk of dissociation? Help us understand the link between autism and dissociation by participating in our study.

You will fill out a survey which can be found at https://gatech.co1.qualtrics.com/jfe/form/SV_9SQdCfxfwmRP6tf and will take less than 45 minutes to complete. You will not be directly compensated for your participation, but results may improve our understanding of autism and lead to better treatment for the symptoms that autistic individuals report struggling with.

Such a great list. Share this with others who might not understand sPD, but want to help you!

So, in case you haven’t heard, I have autism. I’m going to be resuming classes at my local community college soon.

Problem is, last time I tried this, I had to drop a class because it was sensory hell.

Hoooowever, I’m a fucking Slytherin and there’s no way I’m letting that shit get to me twice. So, I’m building a little arsenal of defense against it. Maybe someone can find some inspiration from it.

1. Earplugs or noise-cancelling earmuffs. The cheapest way to go is disposable foam, but it blocks out everything and the tactile sensation might irritate some people. If you’re willing to spend about $13, you can get a pair of higher quality plugs that blocks out most unwanted noise, but allows speech to be heard clearly. My therapist suggested noise-cancelling earmuffs for those who can’t handle things placed inside the ear canal.

2. Tinted glasses. There are special glasses that exist with yellow-tinted lenses to help block out irritating blue light. Blue light naturally stimulates the brain, which people with sensitivity issues might find overwhelming. It also tends to mess with your circadian rhythms, making sleep more difficult. Get a pair of these if you read, use the computer, or drive a lot.

3. Aromatherapy necklace. Besides just being pretty, you can use these to block out any unwanted smells. Add a few drops of your favorite oil to one of the included cotton pads. If you have sensitivity issues to oil, dilute it until the fragrance becomes tolerable. There’s a bonus to this, if you have allergies or congestion - eucalyptus and peppermint oil can help un-stuff your nose.

4. Cooling towel/neck wrap. To deal with heat sensitivity. I chose this over something like a personal fan, because it doesn’t need power or noise. Just soak it in water (i.e. from your water bottle), wring it out, and you’re ready to go.

5. Hand warmers. For those colder days. The best ones to get are reusable and can be reset by boiling them in water.

6. Mints, throat lozenges, sugarless gum, breath strips, or throat spray. Besides getting rid of bad breath, these are good for clearing your palate of yucky stuff. You don’t have to get mint-flavored either - find a flavor that wors well with your senses.

7. Water bottle. Gotta stay hydrated. And take care of that nasty dry mouth.

8. Notepad and pen. Because your phone will fail you at some point because Murphy’s Law. For helping with memory and verbal processing stuff.

9. Ergonomic pencil grip. If you’re like me, you’re A) left-handed and B) get hand cramps from hell when you’re handwriting stuff. Here’s one possible answer.

10. Compression wrist braces. Here’s another. Also good for the typists.

11. Stealthy stim toys. This is just a weird little bit of brain wank for me, but I don’t like my stim toys to be that obvious. Most stim toys out there seem to have been designed for the younger folks and would look a bit out of place in the average work or college environment. This might not matter to some folks, but others might be concerned about stigma. If you feel like this, you’re absolutely not alone. I don’t know everyone’s flavor of stimming, but I will give the general tip of “color is everything.” Darker colors, jewel tones and metals work well for this.

12. Portable cushion. If you’re like me, hard, cushionless seats are a deal breaker. I’m hypersensitive to my seating conditions because of some childhood injuries, so I need to have a cushion in any seat, but this won’t be an option everywhere. Unless, that is, you bring your own. Your best bet is memory foam, but don’t go outside your budget if you can’t afford to. Prices can range from $2 to $30 if you really want to feel pampered.

13. Hand sanitizer or wet wipes. It’s a nasty world out there, and you can’t always get to a sink. Some people don’t get along with the local microbe population, so a bit of self-defense is in order. Careful with overuse, though - you can dry out your skin, and overdependence on sanitation products can actually make you more vulnerable to pathogens.

14. Dry tissues. This isn’t so much a sensory thing as a general feeling-clean-and-presentable thing. If you have motor issues, spilling stuff is inevitable. Allergies pretty much mean you’re going to have icky fluid coming out of your face at any time throughout the day, though if you know that and have allergies, you’ve probably already got some tissues handy. You also never know when you’ll have to touch something unpleasant and need a barrier between you and that tactile sensation.

On March 1, 2016, the Winnipeg chapter of the Autistic Self Advocacy Network will hold a vigil in memory of the dozens of people will disabilities who have been killed by their parents or caregivers. It will be held at 7:00 PM in The Hive at the University of Winnipeg. All are welcome to attend.

[Image description: A poster advertising the event. It reads:

“Disability Day of Mourning 2016

Remembering People with Disabilities Murdered by Caregivers

Candlelight vigil

Tuesday March 1

Time: 7:00 PM

Location: The Hive, University of Winnipeg

People with disabilities are twice as likely to be the victims of violent crime. Every year, dozens of people with disabilities are killed by family members or caregivers.

Too often, media coverage of these murders focus on sympathy for the murderer, because they had to live with or care for a person with a disability. The message to the public is that our lives – not our deaths – are the tragedy.