Three years ago today, I was diagnosed with Ehlers-Danlos Syndrome (EDS). This bad news overshadowed the happiness of being cancer-free for one full year. Thankfully, my boyfriend, @hebba@dismounteverest@bethiesny & @backdownsouth have been wonderfully supportive. 🥑
It super-duper sucks to beg for money. I do have a wonderful part-time job, but I only make enough to pay my rent (nevermind medical expenses, utilities, groceries, etc.) until a final decision is reached on my SSDI application.
If you can help out at all, I will be ever so grateful! Plus, you'll get a thank you in my forthcoming novel! You know, my debut novel, which is sure to be a best-seller! 😉 LINK IN BIO TO HELP! 🥑 Thankies to everyone who has contributed! [In this photo from June 2017, I am showing the hypermobile side of EDS.] #ehlersdanlos#ehlersdanlosgrrrls#ehlersdanlossyndrome#invisibleillness#hypermobility#hypermobile#disabledandcute#disabled#spoonie#zebra
Every time I think I’ve already accepted the fact I was born with an illness( #EDStype3 )something happens that makes me have to grieve for all I have lost and am losing and will lose all over again.Like a month ago I found out that all my fillings were leaking that I had gotten done years ago-dentists kept saying how I need 5 crowns and how it’s not normal for people’s fillings to fall apart this early and basically it’s linked to my #EDS .My teeth were fine 6months ago but now suddenly I need tons of work done.My family can’t afford to pay for 5 crowns this year all at once-like it’s such a burden on them.I don’t want to be a burden but having to constantly be reminded of how much money I’m costing my parents crushes me.i chip in when I can but not like I can work...All these dentists keep blaming me,they don’t understand how bad teeth run in my family and how my genetic disease effects my dental health.Its been weeks since I somewhat came to terms with it but yesterday I was getting another crown in.My nerve was too close to the top of my tooth so I was in tons of pain.They put pain medication into my tooth twice and it didn’t help at all-I’ve never been in that much pain at the dentist.Realizing it didn’t help was so scary.I know lidocaine doesn’t work for a lot of Zebras and I’ve been lucky to have that work for me-but realizing such an important medicine I needed to get through that process was terrifying.It made me feel so broken.Nothing in this world makes me feel so broken like my EDS does.I love my fellow Zebras but experiencing the burden that is EDS makes me wish I was never born,makes me wish no one with EDS would have kids because no one should have to suffer like this and feel like a constant burden.I cried at the dentist office-i never cry in public.Some people I know have asked me how I was this week and I tried explaining how they felt-no one got it and it just made me feel more alone and worse.I’m grieving all over again for this broken body,I’m grieving for my family’s loss of a daughter/sister.I just wish I could stop having to grieve but things keep coming up.On a bright note,I took this #CBDgummy(rest of post in the comments)
I’ve had a revelation about chronic pain 😳 I literally can’t believe it took me this long to think about pain this way - but I have a theory. Here goes.
A lot of the pain doctors I’ve seen know about EDS but they don’t have many EDS patients. And although there is a huge crossover between many different causes of pain - I think it’s unhelpful to think of EDS in the same way as a pain condition that is not yet ‘explained’ or understood.
My pain doctor often talks about many different factors, and although I do appreciate that they’re important, I genuinely think she’s missing a point. Yes, being in pain for 20 years has probably changed my neural pathways and the way my body experiences pain as a whole.
BUT. I’m constantly getting injured. This is because I have a collagen deficiency. And even though I’m working my butt off to get as strong as possible, I can’t get through a day without subluxing, tearing, pulling, popping, or spasming something. The pain that comes as a result of this is normal and natural and quite frankly important. So when she said ‘EDS patients are overly sensitive to pain’, it’s a bit simplistic.
No one could go through what my body does even once and not experience pain from it. And far from being overly sensitive, I only go to the hospital in an emergency. The things that happen to me every day are hospital worthy for most people.
Realising that a lot of the pain is coming as a result of this has changed the way I view it. Taking medication isn’t going to just fix those constant new things. Of course there’s a lot of other factors to pain, and I probably have a ‘chronic pain brain’, but no matter what, my body is going to react to those stimuli.
My aim is to treat as many of my injuries and get as strong as possible. I’ve been in pain for two decades, I can live with it. It’s the constant acute stuff that is unbearable. I feel that if I can get things overall down by 30% I’ll be happy.
I hope this makes sense?! It’s just something I’ve been thinking about and feels like an important distinction that I’ve never heard made before. [image description: meme of Amy Poehler in Parks and Rec saying ‘Everything hurts and I’m dying]
Putting the fit in fitness...had my first seizure yesterday. Who knew POTS could induce panic attacks that lead to seziures. Time to add that to volume 4 of the medical documents. #neveradullmoment#stressedout
Lately my health has been a whirlwind. I constantly feel like I’m chasing relief from a new symptom. Once I tackle one problem, another one rears its ugly head.
I’m nauseas so I take meds, but then my back starts hurting so I get out of my wheelchair, now I’m overheated cause the couch is hot so I eat a popsicle, but anti nausea meds haven’t kicked in so it gives me reflux, so I take Zantac...and so it goes on.
One symptom after another.
It’s exhausting, you guys!
And I wish I had a positive spin to put on it today, but I just really don’t. However, maybe sharing this on here is my positive spin. If you’re in the same boat as me, know you’re not alone. I hope knowing someone else is fighting the same battle might make someone feel a little bit better.
( #ThrowbackThursday to when my husband and I were just dating and I could still stand on my own two legs for photos.)
I may not be buff or muscular, but Ive worked so hard for the last 2 1/2 years building my skeletal muscles and improving my joint stability for chronic dislocations and heart problems. I have torn ligaments all up my right side (ankle, wrist, jaw, hip and shoulder) and learning to take it slow and steady has been hard for a maniac like me. Heres to documenting more of my journey to overcome EDS!
how fabulous is my friend for surprising me with this drawing? i want it framed! thank you @sommer_lafaye 💖
today was a busy day, busy for a zebra anyway. this whole week is packed with different things which is great because i have been laying in bed not knowing what to do with myself for months.
today i caught up with a friend and went to the voices group, it did prove to be a really positive experience even though i have been skipping out on going for months.
this week is full of appointments and catching up with friends, i can hardly wait as it helps pass the time so much. i really have been going out of my mind with boredom just laying in bed on my own.
i am being to be able to be more honest about how my disability affects me to people in real life. today i used my scooter and didn't feel embarrassed at all. i was still hid behind sunglasses, but nonetheless i am getting there. next week i plan to challenge myself by venturing further afield i.e. on buses to places i have missed going.
i have started making plans again and tentatively believing that the past 14 months has been an incredibly hard year but not defining. i am planning on writing my first book on my experience of losing my friend.
i have been out of hospital a week and i have really stood back up and started fighting. for that i am immensely proud of myself. a couple weeks ago i was honestly in the gutter and didn't think i would ever get up again. it certainly seems as if lithium is helping, i am keen to have my bloods done and increase the dose as if it can help this much when the levels are low then i am keen to see what it'll do when my levels are stable and within range.
overall, good things. lots of productivity and much less avoiding. this week will see me leaving the house every single day! 😱 next week i'll start focusing on sorting my finances out as at the moment i have £4 to live off for three weeks lol oops. i have a lot of areas of my life to work on but i have started and feel stronger than i have in a while.
The Great Surgery Adventure, Crisis Mode
So far recovery from surgeries is going reasonably well. My voice is pretty much back to normal. Reactions still cause me to get raspy and even lose speech altogether, but at least it’s an early warning signal. Energy levels are better, but tempered by coming off steroids and the mild-moderate reactions I have when I have to go out. With the back surgery, the pain I’ve had in that area for years now is basically gone. I can also sit up straight for the first time in my life without pain. My toes on my right foot still work, and I’ve gotten back the strength in my legs that I lost while I was in the hospital. I’m hoping to get more than that back though. Overall, progress!
The reason I disappeared from social media for a bit is I‘ve been stuck in crisis mode since I got back from NJ. Especially when you have a severe disability, you rely on multiple support systems to live independently in the community. ‘Crisis mode’ can happen when one or more of these support systems breaks down, and you only have the ability to deal with crises as they come up. Early on after getting a disability, almost everyone is bouncing from one crisis to the next as they try to put their life back together. It can take years to learn about what support systems are available, and how to use them to get in front of everything. If you’ve had a disability for a while and you have the support you need, life can be stable and things like work are possible. If one of the systems you rely on fails, with experience and help it can be dealt with and only cause minor disruption. If two or more fail at the same time, you’re in trouble.
Right before I left CO, a number of systems I use had started to fail. When I got back, my G tube had to be replaced, my Medicaid had gotten screwed up, and I had to move, along with other thing. Plus the unexpected spills and other messes that happen and take energy to deal with without PCA help. Surviving and taking care of latest crisis is all I’ve been able to do. I’ve gotten through some of it, but there’s still a long way to go. Thank you for all your concern! Know that I am stressed but doing ok. Love you!
I rarely let my pain show on my face. In the bottom picture I'm hiding it, in the top picture I'm letting it show.
I think the majority of people don't understand that my body hurts in 10-20 places at all
Tonight, I went to see a good friend who I haven't seen in several years perform, and planned on heading to crossroads afterwards. When I got to the church my friend was performing at and walked into the main room, my heart sank. All of the seating was wooden pews. No cushions, no pillows, no back support. Just awful, hard, benches that I'm pretty sure were designed to cause you pain to somehow make your worship more genuine. For most people, these benches are uncomfortable. For me, I was in agony for the entire 45 minute performance.
There was no position I could sit in that was comfortable. I supported the arch of my back with my sweatshirt as best I could (thank god I thought to bring it) and tried to keep the majority of the strain on my upper back and shoulders, so my lower back and hip wouldn't be damaged. The bench dug into my spine, my shoulder yelled louder and louder, the bones in my legs were constantly pressed into the wood beneath them, and slowly the muscles in my torso and upper back were consumed with tension and fatigue.
I practiced mental pain management techniques but it affected so many areas that it was hard to maintain my focus enough to keep the pain at bay. Noah offered help but there was nothing he could do. After the performance (which I don't regret going to because I was happy to see my friend, and listen to her gorgeous music) I realized I couldn't go to the dance, even to just sit in a chair all night. I needed to go home and start resting immediately or I would get much worse. Thankfully it's rare that I have days where the pain is so bad I can no longer hide it, but the reality is, I am hiding my pain from even those I am closest to 99% of the time.
i'm two days post discharge, today was the day i was supposed to go home. i feel very vulnerable and fragile at the moment, i am really trying to show myself as much compassion as i would if i had just come out of a general hospital. my brain needs nurturing at the moment.
i haven't been sleeping, without benzos and sedatives my brain is always on. when i do nap my dreams are vivid and weird and i wake up sweating. last night i had a wobble, genuinely thought i might kill myself.
i still feel very, very hopeless, more motivated but hopeless. i don't want to reach out for help either because i don't believe it does help. i am feeling that either i will get better now (significantly so) or i will die soon.
nonetheless i am TRYING so hard. i rebooked my physio appointment and rang the pain clinic. i have seen my GP and CPN. i filled in my PIP reassessment and UC work capability assessment whilst i couldn't sleep and so those have now been posted off.
i am trying so hard. i want things to be better. i need help so desperately.
my painkillers have been switched to twice weekly pick ups to reduce the likelihood of an opiate overdose.
i am still nursing a sprained ankle and my heart is going mad in the heat. but today i got out the house with a friend and it felt GOOD.
i am really panicking about my weight, i am the heaviest i have ever been. my BMI is 30 (and no i don't want anyone to tell me how BMI is bullshit because i can see the fat on me). i feel huge and the hot weather makes me feel so exposed.
i am scared of gaining more weight as my metabolism slows on lithium, especially as this time we're aiming for a higher dose. i am really trying not to panic but it's hard.
things are okay overall. shaky but okay, i feel frail and weak in every sense but i am still here trying. i will keep trying until i die and i'll either get better or die, whichever happens first. but i need to try.
i can't communicate enough how messed up and weird i feel. it's like my brain has been in a washing machine on maximum spin for two weeks. but i am trying and if nothing else i am immensely proud of myself for getting home and not giving up.
My left foot vs my right foot. Using titanium screws and wires he fixed my bunion and where the other bandaid is, he put some kind of titanium "bullet" implant to help stop all my bones from collapsing. It was a minimally invasive surgery, well four surgeries in one. Morphine isn't really helping anymore and I'm in a lot of pain. I'm also unable to use my walker anymore because it puts too much strain on my hands causing them to hurt. When I stop elevating my foot it feels like it's being run over with a car repeatedly or someone continuously drops a bowling ball on it. Im sure it will start to get better within the next few days, just have to tough it out til then. I'm so lucky to have @brokenrecordbrad because he has been taking such great care of me. We're flying back to Atlanta tomorrow. Ready to be home. #ehlersdanlosgrrrls#ehlersdanlossyndrome#vasculareds#spoonie#chronicliving#invisibleillness
14 1274:57 PM May 17, 2015
Getting wrapped up for a new brace gave me an interesting idea for EDS management strategies. Just 5 minutes in this shell completely reset my neck and shoulders my muscles hadn't felt so relaxed in months 😊So my idea is to have some type of treatment protocol for managing dislocations involving very temporary casting. Or maybe being wrapped up for an hour each day, giving the muscles a chance to relax could help manage fatigue and prevent dislocations. I think our reoccurring injuries are often a result of confused and spastic muscles. If we can work preventively to manage the muscular confusion I bet our biomechanics would function better and joints would stay in place more. #ehlersdanlossyndrome#ehlersdanlos#hypmobile#hypermobility#orthotics#prostetics#braces#embracethebrace#edssolutions#ehlersdanlosgrrrls#mummy#mummification#workinprogress side note this brace is for sleeping hence the unnatural alignment... this is my horizontal "neutral"
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