I have this new gadget which makes it easier to use the smartboard when I'm teaching. My laptop is in the corner of the classroom, connected with a wire to the smartboard. I'm using a wireless keyboard on a Flexzi, so I can type on the smartboard. Really happy with this solution so I'm able to get closer to my students. 😊 #teachers#teacherlife#WheelchairLife#flexzi#smartboard#EhlersDanlosGrrrls
Haven’t posted for a while. We’ve had a heck of a week with two days at the children’s hospital, one in emerg for respiratory issues, one for scheduled kidney ultrasounds and urology appointment. Urology was great! Everything looks good. We’ll continue to get R checked annually as is standard with spinal abnormalities. .
Emerg sucked. Respiratory issues are no joke and they seem to be extremely common with complicated kiddos. So many other wee warriors we know have been in and out of the hospy this winter. This is our third (maybe fourth?) time to the ER for breathing related issues. Time for some more investigation 🤦🏻♀️ .
R is doing really well otherwise and he makes us laugh constantly. He’s silly and smart as a whip and signing up a storm!!! He’s a happy kid and having a really beautiful childhood. I’m so grateful for my wonderful little family and our incredibly supportive extended fam!
We’re spending the day with loved ones and then tonight my hubs and I are practicing our ASL 🙌 It’s really fun to learn a new language as a family! .
step 1: customize your hoodie
step 2: order 1-2 sizes too large (jk it runs slightly big but I just love my hoodies super oversized)
step 3: bask in the glory of the coziest, comfiest, most spoonie-approved, wear-everywhere hoodie! (and by wear everywhere I mean your bed OR the couch OR your favorite chair)✌️
~ etsy shop link in bio ~
NEW BLOG POST! Since I talk about disability on my blog and social media a lot, I frequently get questions about what x group should know about being disabled or about including disability into their activism. I kept coming back to the fact that the way we're taught to think about and process disability is so very disjointed from the reality that, while I could offer specific words to avoid or touchy subjects, really what was needed was a whole shift in perspective. Disabled people think of themselves in a very different way than abled people think of them. I wrote this article to try to explain where that difference lies and how it impacts all of us, regardless of our level of ability.
Text reads: "Being disabled involves an exceptional level of creativity, innovation, adaptation, decisiveness, solution-seeking, thinking one step ahead, and changing the status quo. When I say that disability is part of my identity, I’m saying that I’m part of a group that shares this unique set of skills and this specific outlook on life.
With such an incredible set of qualities, why wouldn’t I want to identify with the community responsible for teaching me that my needs will always be worthy of accommodation?" Go read the whole thing: https://tinyurl.com/DisabilityAdapt
it was my five year diagnosisaversary on friday, and i've been struggling to find the words to write this post. I've historically been bad at acknowledging it, the built in must-repress-keep-your-head-down-don't-think-about-it that embodied the first five years of my being noticeably ill: crap parents, mishandled diagnoses, and a education system unwilling to cater to anyone that deem 'abnormal'. this diagnosis has been in equal measures a strength and a burden, on one hand blissfull proof that i wasn't making it up, faking it or losing my mind.
and on the other, the ever-heavy knowing that it won't get better than this.
this is a degenerative condition, shit will get funky at some point.
this knowledge has been both a release and a chain around my foot, terthering me to the slow path, a path i would not have picked and yet find myself on.
i read a tweet recently by @painandcats that said chronic illness is grief in slow motion, and today, five years and a day into this diagnosis i'm giving myself and all my past selves (the terrified thirteen year-old, the furious fifteen year-old the twenty year-old desperately trying to fit in the box higher ed demanded of her) space to feel the melancholy of the slow path, knowing that tomorrow the weight will be lighter and we'll carry on once again.
so here, i'm going to leave you with a picture of the first thing i did with my new light-up @neowalksticks cane, which was to make lightsaber jokes and send it to all my friends and siblings.
a light up cane.
will you look at that, little me.
Når vondten tar søvnen.
Når vondten tar drømmer.
Når vondten gjør vondt.
Når du føler deg håpløs.
Når du føler sykdommen vinner.
◇ ~ ◇ ~ ◇ ~
Jeg gjør det jeg skal, jeg er på jobb, jeg trener, jeg er mamma, jeg gjør husarbeid...... Men hvor lurt det er, er jo en annen sak.
Men jeg kan ikke stoppe opp, da blir så mye annet ødelagt, jeg kan ikke la min sykdom gå utover det rundt meg, jeg kan ikke la sykdommen vinne.
Det e jo jeg som skal vinne. ~ ~ ~ ~ ~
Noen slag i tryne vil komme, å nedturer på liklinje som oppturer er desverre hverdagen min. MEN jeg kan ha en viss kontroll over dette. Men akkurat nå føler jeg på håpløsheten i skulderen, å mulig opperasjon, det er så hunsides vondt, å blir bare verre å verre...... ☆ ~ ☆ ~ ☆ ~ ☆ ~ ☆ ~ ☆ ~ ☆ .
I posted my February image on Twitter and received a reply asking “are you standing?” So, here’s a gentle reminder that a significant number of wheelchair users can stand and walk a little.
Does it mean I need my wheelchair any less? No!
So please, if you see a wheelchair user standing up, don’t stare and don’t pass comment. This is not an unusual phenomenon and we aren’t suddenly ‘cured’. A wheelchair is a tool that some of us need to use for better quality of life.
What misconceptions do you find frustrating?
✴️ #promoter for @notoriouslymorbid ✴️
Sorry for being a ghost lately, the ol' trash body is acting up again.😂 I finally got to play with the new pressed mattes and I'm in love!
🖤💚🖤 I got two each of The Void and Creeping Green Moss, plus one of the empty magnetic palettes sold on NM's site, if anyone is interested in their very own TrAshley palette ™️😂😂😂 Eyes:
Creeping Green Moss
Litany Liner in Ceremonial
Lips: Rune and Mire
Brow Creme-ation in Black
The End setting powder
Cute, Weak, and Kittenie
Everlasting Globbstopper setting spray
My SmartDrive came back for all of a week. The fault couldn’t be found, so I’ve continued to have problems with it and am now back to not being able to get out of the house.
It’s frustrating to say the least. Partly that my old chair likely broke my first SmartDrive. Partly that the replacement unit shouldn’t have these issues. And partly that I’ve been given it back, for it to fail again.
So here’s a throwback to when Wheelchair Service loaned me a powerchair, while I was waiting for my new active wheelchair to be delivered (and the replacement SmartDrive to arrive). I’ll be phoning tomorrow to chase my SmartDrive being looked at again and a loan powered option so we can get out of the house again.
Too early for cheesy chronic illness valentines?? Never😏❄️ “I think you’re cooler than my ice pack”
PS, if you haven’t entered the giveaway go one post back! Ends tomorrow😊
11 3562 February, 2020
So a few weeks ago I started a new medication (hormones), stopped a medication (Dysautonomia) and started a new one again last night (Dysautonomia). My pillboxes are getting kind of crowded so next week I will try to create an new orderly way to store them.🤷🏼♀️ .
I had to stop the Dysautonomia tablets because they made my bp drop pretty bad. I told my doc that I had kept trying but it wouldn’t better😰. My doc ordered me to stop them right away and called me a while later to discuss another medication. Which I’m on now.🤗 I’m pretty scared for the side-effects, the mood swings and swelling (from retaining water) are on top of my list. But if there is a chance it helps, I will try! 💪🏻 .
In the meanwhile I try to move more. Do exercises from pt and add in some yoga en strength. I’ll see how that holds up.
So I’m expecting some turbulent times, but I will FIGHT my way trough them👍🏻✊🏻
I went into cardiac arrest in September, and have been doing a lot of processing about ‘dying.’ I’ve come to realize a number of things since then. Don’t worry, I’ll spare you the whole “love one another,” “we’re all in this together and it’s all connected,” and “be present with what is” because (even though it’s all true) the last guy who went around saying those things got nailed to a cross. So here’s my take:
1. The hospital I was at charged $1,487.00 to “attempt to restart heart and lungs.” Keep in mind this was after they let my potassium get so low I ended up going into cardiac arrest. Quite the racket, if you ask me...
2. Medicare only reimburses $194 to “attempt to restart heart and lung.” Does this mean my life is only worth $194? This feels creepy...
3. Death will come when it will, and can be quite unexpected. The first hospital wanted to send me to Denver (and took about 10 hrs to get an ambulance to do so). I told the ER doctor I was nervous about the transport in case my heart went into another arrhythmia and they had to do CPR. He replied that they do CPR in the ambulance all the time and I would be fine (obviously, he had never tried to do chest compressions at 90 MPH - I have and it’s not easy). Despite everything, I never thought I would actually go into cardiac arrest. When the resident came into my room with hand sanitizer on his hands (I’m very allergic to alcohol, even when just in the air) and I started feeling like I was about to pass out, I still didn’t think I was going to die. It wasn’t until I regained consciousness and asked one of the many people in the room what happened that I found out my heart had stopped and they had to do CPR and shock me.
4. At least I don’t have to worry about coming up with any prophetic last words. If it’s anything like the first time (this time), my last words will likely be “Ohh Shit!”
5. This is another great example of why we need a medical abuse hotline. Between the resident not paying attention to my allergies or me, the hospital killing me and charging for it, and so many other problems during all of it, I wish I had a number to call where I could talk to someone who gets it.
9 3927 January, 2020
So today I’m in hospital for a hernia repair op. It’s taken me a while to get here. After I had Tyler I went to a Mums Of Steel buggy fit class and the very knowledgable post natal fitness instructor, Mary, went around the class feeling our tummies to see if the gap had closed between our tummy muscles after we’d all had our babies. People had various sized gaps still but mine was substantially larger than it should be (diastasis recti) and Mary said that although she’s no doctor she felt I may have a hernia (she has years of experience in this field) She advised me to see the GP to ask for a referral to a women’s physio. I visited the GP who felt my tummy and said it was all normal “of course your tummy is lumpy, you’ve had three children” were her words. I wasn’t happy but I went away and sort of pushed it to the back of my mind. Over time the hernia (that supposedly didn’t exist) has become more of a problem, it sticks out like a golf ball next to my belly button and is very painful at times, I’ve had to take days off work because of the pain, it affects me lifting heavy things, which as a mum of a toddler is something I can’t really avoid! So I went back and saw a different GP who referred me straight away to the surgeons. Only a few months later and here I am waiting for it to be repaired. After I am healed I’m going to look at how I can fix the diastasis recti (Although I’m not really surprised any of this has happened, I have Ehlers Danlos Syndrome, a connective tissue disorder, and the muscles not pinging back how they should kind of fits with the EDS)
One thing I find shocking is that there is such a lack of post natal care here in the U.K. I had a 6 week check where the GP literally just asked if I was ok, no examinations. We are monitored so closely during pregnancy and birth and as soon as the baby is out nobody really cares anymore. I wonder how many women suffer with problems post natally and even years down the line with things that could have been prevented had they been given better care and advice after they’d had their babies. -
Have any of you had a hernia repair or diastasis recti? Would love to hear your experiences. -
54 7627 January, 2020
Hey furends, sorry for the severe delay in not posting! Mommy had kinda been going through it... just sick enough not to be able to post. Just enough doctors appointments when “healthy” to be too tired to post, and all over a little extra sad.
If anyone, friends, family, chosen family or our beautiful IG FAM would like to reach out, call or stop by we would be more than ok with that!! Send us a message and let us know! Hopefully mommies body will get better and so will everything else!! Hope you have a SUPPORTIVE Sunday!!
As always we WoofMew.
Getting another two units of blood today. My IV nutrition doesn’t have iron in it, and so I have low blood counts from lack of iron. They leave iron out of TPN in the US because a lot of people can have bad reactions to some of the forms of iron. Many people are able to tolerate iron infusions through an IV though, and get iron this way. Unfortunately, I have reacted to all of the forms of iron I have tried. As a result, I need regular transfusions to treat my iron-deficiency anemia. This time, my hemoglobin got so low (6.1), I’ve been short of breath trying to do anything the last few days.
I have had a total of 9 units of blood over the last year, and I know people who have needed a lot more than that. When I was younger, I would donate blood anytime I could because I knew people really needed it to survive. I also knew there were often shortages of blood because not enough people were donating to match need. Not only do the blood transfusions come from donations, but donated blood is also used to make IVIg, the immune infusion I’m on. If you have donated blood, thank you! If you are unable to donate blood, that’s ok too - please help raise awareness. If you haven’t donated blood before, please consider donating! The worst part is when they insert the needle into your vein, but once it’s in, it doesn’t hurt anymore.
Save a life (like mine 🙂) and donate blood if you are able!
2 4924 January, 2020
Managing a flare up 💜
3am. The reality of Ehlers Danlos and Gastroparesis.
The past few days have been a nightmare of flare ups.
My gastroparesis is in full throttle mode. I am super nauseous, but unfortunately, the stomach paralysis prevents me from being sick. I can only wretch uselessly. I have to just wait the sickness out.
My nausea makes me dizzy, and it triggers my POTS. I am too weak to stand without almost blacking out. I cannot move my head without the world spinning and my heart drumming loudly in my throat.
My Intestinal Failure has bloated my tum to a full term poopy pregnancy. It is painful, heavy and debilitating.
Everything hurts today.
Right now, it’s hard to push through and to see my identity through the pain. When I feel so so unwell, it is hard to believe that I could ever have been well in my whole entire life.
I almost cannot believe that less than 48hours earlier, I was killin’ it in a final interview for a dream job.
I cannot believe that in the last week, I have been a gym-going, pole dancing, rock-climbing, 4am gay bar dancing, super socialising, date-night-organising, model-contracting, holiday-booking Oxford gal.
Right now, I feel like an international super spy. I feel like a chronically unwell baddie masking as a healthy and well super human.
But this is not the truth.
I am trying to remind myself to not compartmentalise my life into “healthy” and “unwell”….I am both. I am riding a flare up, and I am all of my successes. I am all of it. In fact, I am even more because I have ridden the flare ups and still found successes.
Further, I am trying to remind myself that I am not defined by my flare ups that I cannot control.
Rather, I am defined by the things I can control - how I manage my symptoms, how I love myself, how I treat others, and how I choose to spend my good moments.
It’s time to not be so hard on myself, to look after myself, and to look forward to the undoubted future happinesses on my way when I am back up and running.
This too shall pass 💜
As an EDS patient, I have hard days. I also have some good ones, but no matter the mood I NEED to move. And it almost always hurts. I never knew why I felt so bad in my body, there were some days when I couldn’t get out of bed (still can’t do it easily) and I felt otherworldly disconnected to it. Now I dance (or do something quite similar to it, as I have never been taught how to properly). I wake up every day and sometimes force myself to it, sometimes enjoy it very much. Sometimes end up laughing, sometimes crying out of pain. My therapist states, that no matter the obstacles, I just need to move - when I don’t, the ligaments holding my body together go weak and I can’t pull up a cup of coffee to my face. So I jump, I walk, I shake my butt, I try to move every single part of my body, I try to send a thunder through it from time to time, I hug it, I kiss it, I am finally thankful to it for sticking with me through 27 years of massive abuse, wrong food, stress, no movement, wrong people and every single trauma I have force fed myself with. The time has come and I mean it. I am happy, I reached my goal body composition, my mother’s weight, every strength level I could wish for. And it feels like just a beginning. So here I am in a pair of weird pants and a sweatshirt. I invite you to this challenge. There’s no better feeling, than feeling yo self. #EDSemail@example.com
#EDSawareness#teasertuesday#zebra#indigodusk "You know better. I scold myself, stretching and hearing my elbows click, a rush of pain sparking down each of my forearms in turn.
Most twenty-three-year olds don’t have to think about making this kind of bargain with their body. But I am not like most twenty-three-year olds.
I’m a Zebra, suffering from Ehlers Danlos Syndrome, a connective tissue disorder that has reduced my life to exactly this. Bargaining, pacing, compromising, never quite knowing how I will feel in five minutes from now, or if I’ll feel the same even five minutes after that."
Karolyn Gehrig (@karolynprg), who describes herself as a queer, disabled writer and artist, started the hashtag #HospitalGlam in 2014 after being diagnosed with multiple chronic illnesses that require her to see a doctor regularly. By posing like the models we often see in glamourous shoots, Gehrig makes herself feel comfortable and in control of her body in a place where she usually may feel vulnerable. With #HospitalGlam , she seeks to empower patients at a time and setting where they may feel like they have little agency over their bodies.
“I think some people have a misconception that it's about dressing up, or wearing makeup, but it's really about entering the space as yourself and owning it to be able to address your needs,” Gehrig tells SELF in an email. She is also sure to alert her doctors and nurses that she will be taking photographs, who have been vastly supportive of her project. “[Hospital Glam] reminds doctors that we're people, not bodies, not medical problems that won't go away,” Gehrig says.
Gehrig’s project has expanded as a means of boosting disabled representation in social media spaces. The photos she shares take a feminist angle on self-image and body positivity filtered through the lens of disability. “Disability and chronic illness are diverse,” Gehrig says. “And I want to see our feeds flooded with the rich creativity we seldom see reflected in other media.” | 📷: @karolynprg | 📝: @taylynharmon | #TeamSELF