Transcript for Vlog #9: Chronic Illness Tag (Part 1), therapy, Youtube recommendations + tattoo etiquette

https://www.youtube.com/watch?v=jd11fcTLhdk

[music: Killercats - Kaibu] [intro: Pinhead: "I. AM. PAIN."] So I drive Randy's car for the most part, now, which is the gold Prius.  And I always forget to put this up cuz the other car has it on the license plate and this one you actually have to put up all the time and we usually put it down because he's tall and he can't see through it, but yeah, I definitely just went to the Starbucks without proper identification.  Luckily they know me but dang. Yeah, never underestimate having another wheelchair using therapist.  This is awesome.  This is working really well.  And  she recommended that I find this video by Zack Anner called Pimp My Wheelchair.  So if I find that I'll link it below. And I'm definitely going home and looking for that and hopefully we'll be able to watch it cuz that sounds hilarious. I feel like I look like trash, but oh well. I found it easier to just film in chunks and um go from there, so that's how I'm gonna do this, so… I am gonna do, right now, the first 3 questions of the chronic illness tag and I'll link all that information below.  I found it through Painful Hilarity.  I've been looking for shorter tags[cough]…shorter tags, but I think I can do this if I just like…film it throughout the day.  Anyway, so the first three questions?  I said?  I don't remember. Anyway, 1. What have you been diagnosed with? I…how should I do this… I've been diagnosed with Hypermobile Ehlers Danlos Syndrome. I've been diagnosed with fibromyalgia. I've been diagnosed with dysautonomia. Post-traumatic stress disorder, obsessive compulsive disorder, depression, which is either just a consequence of the situation I'm in or actually, like, diagnosable on its own.  We don't really know. Um…others…? #2: What will you tend to do at night if you can't sleep or when you can't sleep? This is really bad but lately I've stopped taking amitriptyline on a regular basis, like on a daily basis for controlling my depression.  And I explained why I did that on Twitter a little bit ago but basically I just don't like how it makes me feel compared to some other medications that I've found to work better but I don’t have access to anymore, so… I have all this amitriptyline left over, and if I don't take it on a regular basis it basically works as a sleep aid. So, if I can't fall asleep and I know I don't have to wake up really early for work the next morning I'll just take one of those.  And like, last night, no, yesterday I woke up at 10am which is really rare for me now.  So, it works! Or uh sometimes I'll, now that I have the heating blanket available now, now that we found it again, I'll use that or lying on the floor sometimes works as well. Or crying. #3: Worst experience/side effect of a medication? Has to go to a, oo… It said side-effect, not withdrawal symptom, so I'm gonna go with Tramadol as well as Vicodin because both of those spurred some very serious and awful gastrointestinal and excretory side-effects which I would prefer to never experience again, so, that one wins, for sure. And I'll come back to this tag a little bit later in the day, so see you then. What is this…? Why? Alright, I think I might have mail, but I'm gonna do three more questions of this chronic illness tag before I go down and check because that's gonna be a big whole ordeal, don't know how long it's gonna take to get up the stairs or whatever, so I'm gonna do this first. #4… How has your condition impacted your mental health? Check my twitter… But seriously like… Y'know, chronic illness puts you in a constant just…series of changes and new accommodations you have to make and some of them are..stuff ya didn'…stuff you just don't expect… So, I, it's a process…I'm not to the point where I can be cheerful and excited and "thankful" about the whole experience yet, but… Y'know getting the Ez Lite Cruiser I think is gonna help quite a bit cuz I'm gonna be able to like, get out, and get out more. Being on the first floor is gonna be another big deal, to fix things.  Maybe help me a be a little bit better about my situation…and um, once I'm working at least part-time somewhere where I'm seated I think things'll be a lot easier.  But, y'know, gotta take it one day at a time and I am never gonna claim to be the most, ha, positive or well-adjusted person about this quite yet, so, I dunno… Keep watching for the progression, I guess. 5. Describe your social life. Um, online I have a pretty flourishing social life.  On Twitter, on the messaging services I use to talk to people back in Cincinnati with, I talk to them every day.  I talk to people online every day.  I have a lot of friends I met on twitter, and some that I've met on tumblr who I still talk to because I don't use tumblr a lot, at all, other than the transcripts for these, now. In person?  It's a little more isolated, or I'm a little more isolated.  But that's why I like the job that I'm at right now, and that's why I'm not keen on the idea of jumping to another job even though it might be better for me health-wise…it's like, I'm JUST meeting people.   So, I dunno… A+ social life online and when it comes to people I consider my family, absolutely, but when it comes to um, support systems offline, Randy's fantastic but he's one person, so I should get to know more people locally, probably. 6. What is the hardest thing to do when you are flaring? And I don't really know how to take this, if this means like, emotionally-- what's the hardest thing to do?  Or physically-- cuz that really varies, physically, depending on what's going on. But um, just in general, I'm gonna say driving right now, because, with the amount of cognitive dysfunction I deal with if I have elevated pain levels for a certain amount of time, [cough] driving is becoming more and more difficult. And um, yeah, because of the level of inconvenience that's gonna cause me, I think this one wins for now.  Maybe I'll do this tag again in 6 months and I'll have a different answer, but for now, that's what I'll say. So, it turns out, Randy has the mail key, so I can't get what I was gonna check, not yet at least, so I cleaned up a little bit, and I wanna go get some either more tea or juice or something because lately I've been preferring to drink my calories.   But while I'm waiting, because it's like 5 o'clock, and I don't wanna go out when everybody else is out, so just to pass some time I'm gonna keep doing some of these questions. Alright… 7. Do you have any worries for the future? Nope!  Nope…not doing this…right now…nope. [in the distance] NOPE! I have makeup on.  I'm not answering that. 8. Favorite comfort food? These, Tazo green teas, which I hope to get very soon when I leave. 9. Tell us a valuable lesson you have learned through being sick. And, um, right now I'm not really in a good enough place to answer that in any capacity… Anything I'll give you is gonna be steeped in cynicism and so I'm…I'm gonna choose not to answer this one right now. 10. Name 3 things that you miss that were taken because of health limitations. I have makeup on. 1) Running, 2) eating whatever I want, 3) dreams of the career I had chosen. Alright, so I'm just gonna finish this up.  I'm gonna go out, and hopefully get more teas or something, and shoot some more things, work on another EDS video that probably won't go up today, but anyway… 11. Last one: How old were you when you started noticing symptoms? Alright, this is gonna be…complicated… So, like, if I look backwards I see EDS symptoms from birth on… Fibromyalgia symptoms started when I was in my mid-twenties like at the end of grad school, and that was when like, any chronic pain symptoms that I had had became so bad that it became concerning. I've had back pain, like my back pain started in middle school probably but never thought that it was anything abnormal.  I thought everybody dealt with it.  So, that's what I thought about a LOT of things EDS-wise until very recently, so… Yeah, so, it varies. I'm going out in like, no braces…hardly anything because y'know what? No. I just want to go there, get tea, and come home, and I'm NOT asking for that much so let's do it. So here's the barrier we have to create if we want to keep the door open because Lucy likes to run down the stairs.  It's just one of our tables with our closet door.  Ridiculous. [music: Itro & Kontinuum - Alive] And y'know what?  Here's some tattoo-related etiquette for you: if you see somebody and they have nice work and like, you want to say something just say something to 'em.  Don't, like… Don't point at us, don't talk about us right like, really?  If you wanna say something, and we're right next to you, just say it.  Just say that it's cool.   I just… Involve me in your conversation that is very clearly about me, right in front of me.  I promise I won't be offended.  Just saying. And to add onto that, I know I won't be offended because I've already heard the most awful stuff anybody could ever say to a heavily tattooed person, ever, so, y'know what?  It won' be new.  So just, bring it on.  Bring it on. It's for me.

Transcript for Vlog #8:

Video link: https://www.youtube.com/watch?v=-ZKOi89T6xo

Randy: "You've GOT to be kidding me." "Minimalism at its finest." [music: Tobu - Candyland] [intro: Pinhead: "I. AM. PAIN."] My self-care is just slathering this all over my body, apparently. This little Bratticus Finch was getting allll up in the vlog earlier-- not the vlog-- the marijuana tag…could NOT leave me alone! What! Here's all the attention you require.  Hi baby! Oh now she comes out.  I know I'm not the only one… If you see me from the top up, I'm never wearing regular pants.  Always sweatpants. Whatcha doin'? Here's some annoying nonsense: when you put lotion on and then it shows up on your cane.  Oh we're not gonna focus?  Cool. I'm wearing my wheelchair mermaid Annie shirt! I did the first two questions of Day 2 of the #ThisIsMyEDS tag in vlog #...shhh…I don't remember…Those are in Vlog #3.  I've linked that below. 3. When did you first start experiencing symptoms? When did you acknowledge them as symptoms? Obviously I've been experi..exp…omg…experiencing symptoms my whole life but I started acknowledging them as symptoms sometime in my twenties: I recognized I had symptoms of some type of hypermobility in my early twenties and recognized them as EDS in my late twenties when they became malignantly symptomatic. You can tell if I'm especially dealing with symptoms if I'm OBVIOUSLY reading off a script. I used to run and weightlift…things like P90X and distance running.  I had to stop running during my last year of grad school due to an unknown pain in my knees. During my second year teaching symptoms that'd be identified as fibromyalgia started giving me issues.  We moved to Arizona to get away from the cold.  We'd heard people feel better in the dry heat.  I did for awhile and then the EDS symptoms became much more of an issue and much more obvious as the fibromyalgia symptoms weren't as strong and thus didn't mask the EDS as well. What?  You can't attack the other cats.  You're gonna get sprayed.  Go. Anything atypical about my body I didn't know was weird until extremely recently.  Even at work, I'm like…can you bend your fingers this way?  Can you do this?  So I'm still trying to figure it out, to be honest. 4. Was there a specific age where your health drastically changed? If so, when was that? I was in my mid-twenties when everything started.  Or anything that would have given me enough trouble to warrant going to a doctor or putting braces on or being scared about the pain, or whatever.  Last year my feet started to begin having symptoms and now I can barely use them.  Two hours standing is my limit before I need to sit down or start experiencing cognitive issues or dysfunction. 5. What medicines, treatments, and/or devices do you typically need? Do you have access to all your needs? Ie. body braces, Feeding Tube, Manual wheelchair, power chair, power scooter, walker, cane I use body braces, I have a manual wheelchair, I'm getting a power chair very soon, and I use my cat cane.   Once my Ez Lite Cruiser arrives I'll have access to all the mobility devices I feel I'll need.  So right now,  I'd say that I'm…I'm very blessed compared to what the situation could be. Y'know just…once I get the Ez Lite Cruiser you're gonna see a lot more in the vlogs! Y'know, I'm gonna be able to go out a lot more and be more independent. So I'm really excited about that. Oh come on… 6. How often do you go to the hospital? How comfortable are you in medical environments? What kind of resources and support do you use? (are doctors helpful, support groups, personal research, trial and error) I am not comfortable in medical environments because I feel like I'm never believed.   The last time I was admitted to a hospital was due to high pain which was causing me to become suicidal.  Because sustained pain levels can do that!  Sustained high level pain can do that.   This was prior to my EDS diagnosis, so all I had on my chart was fibromyalgia which really opens you up to so much medical abuse.  I can't even tell you. Essentially, they put me in a room, implied I was drug-seeking, and implied I just needed to be in a room until I "got over it" or "got tired of waiting to get drugs." I will never go to the ER again unless I absolutely have to.  Which, I mean obviously, no one WANTS to go to the ER, but…y'know… Unless I am bleeding out of my face, I do not want to go to the ER ever again because of that situation.  It was terrible. That proved to me that healthy, abled people and doctors would rather see us die than treat us compassionately. I had a rheumatologist before I lost my insurance but I wasn't getting much from her.  She was treating me for RA, which I don't have…I DO NOT have… But she was treating me for that because it's "easier to treat" than EDS. I had a pain management doctor who was great but worked within a really bad pain management clinic who among other things threatened to discontinue my care due to medical marijuana use.  Which that doctor had given me his blessing on, so… Then when they realized I had no more insurance they were VERY hostile to me so I haven't gone back. I talk to people online with similar conditions when it comes to support.  Randy is healthy but extremely supportive.   He's like…the best.  He's the most supportive person.   As well as like the friends I have online, and my ex and best friend Alex and her fiancee, like, they're super supportive as well, but y'know, they live in Cincinnati, so, um, I really miss them so much, like, seeing them in person. When it comes to people in person, I have no,  like other than Randy I don't really have a lot of people.  And that sucks. So that's the end of that tag.  Let's see what else… What more footage of the cats being ridiculous I can find, otherwise thanks for watching, and check out the little medical marijuana tag that I created. Check my other videos.  And I'll see you later!  Have a good night! Oh what, I'm done filming? Bra comes off immediately.

Transcript for #littleMMJtag YT video

https://www.youtube.com/watch?v=zs5XK4rRBnE

[music: Tobu - Candyland] After Chronically Mo made her video about medical cannabis use, I followed up in one of my vlogs discussing how I've integrated cannabis into my pain management regimen. I've decided to make a small tag to help open up discussion about medical marijuana among patients.  I know a lot of people are hesitant to talk about it openly, so I hope this can work as a script or a jumping off point to talk about it. 1. What is a benefit of this medication? One benefit I've found is that it offers mild to moderate pain control or pain relief for my pain-related symptoms.  I've found it very or much more helpful for controlling trauma-based symptoms as well as many anxiety symptoms like OCD compulsions, sort of, and panic symptoms, as well. I've also found that it's a lot harder for me to really go into a flashback if I'm on or using medical marijuana.   And I've found that to be the case for a long time now. 2. What's a negative side-effect that you experience? Some strains give me a headache.  I've found that it's mostly indica strains that'll do this to me so I've kinda learned to avoid those or at least know that might be the case.  I've also found that I'm avoiding CBD strains because I don't find enough benefit for the cost that's almost always attached to that. There's also still a stigma around using medical cannabis in any capacity and that's definitely another negative. 3. What types of medical cannabis do you prefer? In Arizona we have access to flower, concentrates like shatter and budders, topicals, edibles… Anyway, we have edibles as well.  I don't like that.  I don't like them, at all.  I've even seen CBD-water and dog treats.  I prefer to stick to concentrates like shatter, though. And lastly, 4. How does #mmj fit in with your medical regimen? Currently as I’m waiting to get insured again medical marijuana and a muscle relaxer called um…cyclobenzaprine are the only two medications I have available that are worth using.  I have a stash of old tramadol that I'm afraid to use because of the extreme gastro side-effects I experienced while on it. Anyway, that's it!  That's it for the tag!  That's why it's called the LITTLE mmj tag.  I've added… She REALLY wants to be in this video, apparently.  That's why it's pain AND cats, right baby? You have lipstick on your nose. ANYWAY, I've added the questions in text form so feel free to do this tag on your channels! Thanks for watching!

(I have Hypermobile Ehlers Danlos Syndrome + related issues, mild scoliosis, and fibromyalgia.)

So in the last week I've started experiencing new, severe back pain in my thoracic spine.  If I move or breathe or cough I can feel the bones in my spine crunching around and shifting.  If I bend forward too much, it sends this electricky, sharp-but-dull jolt through my body.  If I roll forward as if I were rolling into a ball, it makes it feel a lot better.

I'm currently uninsured and very financially strapped.   My ER visits locally have just involved being labeled drug-seeking because of my chart.

I don't really know what to do because this has gotten a LOT worse in a very short amoun tof time

Any ideas? :( As to what it could be, or what to do?

follow me on twitter: painandcats_

reblog if you think eating hot peppers a la that Speechless episode should be the new standard for people apologizing for their ableist bullshit

Handmaid’s Tale – Episode 1

Trigger warnings: rape, ritualized rape, religious/cult abuse, religious extremeism, miscarriage, guns, execution, violence, talk of “rounding up” of LGBT people, violence towards women, eye removal (not shown).

Basic summary and more warnings below

DO NOT START WATCHING WITHOUT KNOWING WHAT YOU’RE GETTING INTO.