(Sorry there will be no translation)
I apologize for my Insta being depressing, or not as positive as it used to be. Those last few months, especially the past 2 weeks, have been exceptionally hard. Learning of many lost exam requests/referrals that were lost, doctors missing an important blood test result, worry about possible diagnoses...
Mostly, keratoconus is just waiting to be confirmed and with EDS it’s not the best combo, makes treatment more complex (no surprise there). My vision is so bad, and I’m so worried it will always be. I know it could get much worse and it’s so, so scary. I try not to worry before I know the facts, and I know that even then, we cN’t predict anything... still I know how bad I see now and it’s not being paranoid or hypochondriac to be worried that it won’t get better (my vision started deteriorating last June and still nothing has been done, they couldn’t figure out the problem before... and, guess what? the cornea topography request never got through).
So I need to work (the good news is my career is going well and I have even a bit too much work for my health), but my head is not in it and my blurry vision makes it so hard... and of course it’s constant headaches and it trigger migraines as well. I’m lucky to have my honey to hold me in his arms and listen to me... and help me with the house work since I can’t do much.
It’s just a bit too much lately. Again, I’m sorry. i wish I could be more upbeat. #ehlersdanlos #keratoconus #hyperprolactinemia #workfromhome #blurryvision #migraines #lovehim #zebrastrong #lostinthesystem #worried
So this was me earlier. Snow today is like the balls of polystyrene, wind was blowing too, so by the time it took to load my wheelchair in my car and for me and mum to get in and shut the doors, my car (and us) looked like someone had burst a beanbag! No I didn't have a coat on but I had my layers on. We were meant to be going to the cinema to see Peter Rabbit, but the weather looked bad, the paths and slope to get into the cinema entrance hadn't been gritted so had trouble with wheels spinning, I decided I didn't want to risk it. 2 hours it would have been, by which time it would have been dark too! So rebooking for in the week. Really excited to go and see it, I love getting lost into a movie, helps distract me from my pain. Everything is getting worse. Good job I got my new wheelchair when I did, use it everywhere I can, for the other stuff I use my Smart Crutches, which reminds me, I need to take photos of them and my wheelchair, do a review on the crutches and introduce you all to my new wheelchair. Anyway back to today, today was a curling up with a blanket and a hot chocolate kinda day. #selfie #wheelchairuser #wheelchairselfie #spoonie #spoonieselfie #ehlersdanlos #ehlersdanlossyndrome #fibromyalgia #gastroparesis #dysmotility #chronicpain #chronicfatigue #degenerativediscdisease #facetarthritis #jumper #snow #cinema #peterrabbit #changeofplan #ice #slippy #wheelspin #snowselfie #cold
A year ago today I was getting my feeding tube re-surgically placed after getting the stomach flu which caused me to lose all the weight I’d managed to gain with my first tube. It’s been a year and it’s crazy what’s happened since then. I officially got diagnosed with Ehlers Danlos Syndrome type 3 - (EDS 3) last Friday .... it explains a lot about me and the way my body is... it has been a VERY long fight to get to this point and finally having a diagnosis makes me feel less insane and it validates my pain. I’m so exhausted from everything.... the tubes... the pain in my joints and the tube sites.....
The malnourishment... the insomnia... the anxiety ... the migraines... the nausea.... the vomiting.... the diarrhea that makes me sweat so hard I pass out.... Chronic Illnesses are not easy. It’s a DAILY battle. For the first time in 2 years I spent the last couple days at the Oregon coast with my parents and it was such a nice break. So today I treated myself to a new ring to remind myself that despite all the bullshit life throws my way, life is still a Gem; all these beautiful moments in between the ugly painful times is worth the battle.... without Darkness there is no Light. it’s the tiny little things that truly fill my soul that will always matter the most to me.💚
Despite the effort I like taking my daily vitamins because I can really notice the different when I’m more anaemic ect. 🦓
I sometimes find it hard to eat enough food to get all my vitamins so I take vitamins and drink replacement shakes whoo 🦓
It’s going to be 40c or 104f today!!!! What’s the temperature like where you are living at the moment??
As you guys know I am read a book right now called
‘You’re a Badass’
And it’s giving me all the positive vibes
I swear today’s chapter was talking to my soul. So here’s what I took away in a nutshell.
🔸Passion Trumps fear 🔸Done is better than perfect 🔸If you’re serious about changing your life.... you’ll find a way, if you’re not you’ll find an excuse.
So the other day I ordered some compression stockings online to try out annnnnd THEY’RE HERE! I’m too excited to see if they actually fit or not to wait till tomorrow morning, so I figured that if I lay with my legs up on the wall until they (feel better...) seem less swollen, it might make up for a little bit of the fact I’ve been up all day. I really just want to see if they fit. Although this does feel really good... I should do this more often. #POTS #milddysautonomia #eds #heds #ehlersdanlos
"Scarred hearts don't heal, but overtime the scars can change. They can become smoother, softer, and some scars can even fade away." ~ Meredith Grey #greysanatomy
This is so completely my attitude every time I'm losing it because my pain is above an 8/10 with zero relief in sight. Usually when I literally can't lift my arm or make a fist, lol. I talk shit like a bad drunk when I can't deal with my pain levels. 😂
Thankful for the RSO I am able to take even if I can't get outside. Nerve pain and migraines (and the resulting exhaustion of fighting them with little to no relief) have had me in bed for days. I see my pcp next week but don't want to be a whiner so probably won't bring up my pain. We're out of options anyway, at least as far as trying to control the neuralgias and pains related to the nerve-damage in my spine.
I am however hoping she will continue to be in favor of going forward with a broad but more aggressive treatment such as methotrexate.
I'm not even diagnosed with a specific autoimmune illness, more like 10+ co-conditions and congenital illnesses, & various autoimmune allergies. We're assuming that I have a yet-to-be-discovered autoimmune illness in addition to spinal injuries, migraines, EDS&co, and ME/CFS/FMS. I match up so closely with lupus, MS, Lyme, a few others, but blood tests haven't indicated lupus, they've only found one scar in my spine so far, & no Lyme test in the 7+ years I've been seeking answers.
New meds really scare me, I've had so many bad experiences and gnarly reactions, but being constantly stuck in bed with no future is not a valid option. I have shit to do, lives to change, adventures to pursue. One med is unlikely to change my situation, but I don't know until I try, and right now I'm not even getting a fighting chance at a life worth living.
#chronicpain #chronicillness #spooniefamily #myalgicencephalomyelitis #chronicinvisibleillness #invisibleillness #comorbidity #chronicfatiguesyndrome #ehlersdanlossyndrome #ehlersdanlos #painwarrior #chronicmigraines #spinabifida #klippelfeil #spooniestrong #painmanagement #whatpainmanagement
?! #takingmytreatmentintomyownhands #RickSimpsonOil #CBDoil #cannabisheals #chronic_illness420 #trigeminalneuralgia #tarlovcystdisease #mastcellactivationdisorder #degenerativediscdisease #methotrexate #autoimmune #hypothyroid #peoplehopetribe
I'm seeing my favorite band @walkofftheearth
tonight for the 5th time @madorpheum.
I'm hoping the ADA seating works out well. We called ahead and were told "oh just let someone know when you get there." It's always hit or miss at venues. The seats could be great but then drunk concert attendees really want to sit there too. I've had beer and cocktails spilled on me more than once. Or the seats are way far in the back. Or sometimes, it is a seated concert but people decided to stand for the whole time and all I see are the behinds of the people in front of me. The unpredictable dizziness from standing too long is a pain plus I have to protect my chest port.
Man, do I miss the days before POTS and dysautonomia. When attending a concert, I could just show up whenever after the doors opened. Stand the whole time. Dance to the music the whole time.
It was a really hard transition after shingles caused permanent damage to my autonomic system. Walk Off the Earth's music and the support of my husband and my friends Kate (who is going with me tonight) and Emily helped keep me out of a very dark place.
Never underestimate the power of music and words. ❤ to WOTE.
#disabilityawareness #pots #ehlersdanlos #ptsd #epilepsy #protecttheport #disabilities #veteran
Y’all have fun at ECM — you won’t find this custom gear there! I’ll call it the “Thrower’s Bandolier” I think. Sadly, it’s a one-off exclusive. Sorry! 😂 Loaded up with @gsquaredyoyos
Bliss, and @recessintl
Charm. Swipe for that pretty stuff.
Hey everyone, sending you lots of zebra strength to have a great weekend! For those in the UK braving the snow, wrap up warm and keep safe! Why is it that everything hurts more in the cold??? Brrrrrr ❄️🦓💪🏻 #zebrastrong
#promise #life #heart #followyourheart #followyourdreams #newgoals #writing #ehlersdanlos #genietjes
I started writing daily ever since I had to stop teaching yoga and close up my studio because of a genetic connective tissue disorder making me very ill. Don 't try to read that to heavily though. This drastic change made me connect on a even deeper level with myself. I am reinventing myself as we speak just by following my heart. It wants to write...so I do.
I write...in the purest Gratitude...because Life simply gave me the space to do so...to connect with my true Self again.
I was writing daily as a child and teenager...so Thank you Life for reconnecting this part of me.
I feel drawn to a new study including the magic of words, reading, languages and writing.
Although the challenge scares me ...it gives me a welcome new adventure once my body feels okay to do so. Lets just follow whatever my heart likes to, I trust Life itself is guiding me.❤ Please follow your heart and soul...they always tell you where to go...all you have to do is listen.
Loads of love,
Part One of a window into my life. These are all of the things I take every morning. This is one of two large quantities of vitamins my doctor has prescribed for me to take everyday.
I have been diagnosed with Ehler's-Danlos Syndrome, Osteoarthritis, and Mast Cell Activation Syndrome (to name a few). My doctor also found on top of those things (probably because of them) that my body has been severely deficient of certain amino acids which has resulted in my body trying to get them by basically draining my muscle mass, taking it from my muscles. The vitamins and supplements he has me taking are kind of a hail Mary to put a stop to this and hopefully allow my body to recover a bit. My energy levels are very, very low. My ability to walk is severely compromised.
For exercise, I am to take an antihistamine (to get a handle on my MCAS symptoms), eat something that gives me electrolytes (he recommended chicken soup), and put on some compression socks...then try to carefully and slowly, using whatever mobility aides I need, walk for one minute. ONE MINUTE and it feels impossible.
This is my life. I work very hard not to sit and wallow in what I no longer have but to instead focus on what I do have. I was a cross country runner in high school. I've been known to push myself through impossible things. I'm a very strong person, emotionally. I won't lie...sometimes this all gets me down. But I have a great support system in my husband and my son and I know that, no matter what happens, they love me and are here for me.
Here's hoping this hail Mary pass works!! 😊👍💜
GIVEAWAY ALERT! We’ve decided to do a series of inspirational book giveaways to hopefully help you through a hard day or night. To start it off, we’ll be giving away a copy of “The Sun and Her Flowers” by the wonderful @rupikaur_
. One of our favorite quote books!
1- Be following us here at @chronicloveclub
2- Tag 2 friends
3- For an extra entry, repost this picture with the hashtag #CLCbookgiveaway
Giveaway ends on Monday at noon EST.
I went out today in the wheelchair for the first time (: I got WAY less stares than I thought I would get, thank god
It was really good to get out even though it was freezing and now my knee is killing me from being rattled around all day, I also now realize how bumpy footpaths and roads are 😂
Also I'm not sure if I mentioned this in my last post, but the hospital called me the other day to make an appointment with the hand therapist. I see them on the 21st and I'm hoping to ask them about getting sized for oval 8 ring splints
So I have my next GP appointment on the 20th, this hand therapist appointment on the 21st and then my post op follow up with my surgeon on the 22nd and I'm pretty excited because after I see the surgeon I'll know when I can get out of this sling! It should be really soon (: #ehlersdanlossyndrome #ehlersdanlos #eds #physiotherapy #postop #wheelchair #invacare #connectivetissuedisorder
I have 2 stories to share; one that is in my Heart but very few people know. When I first heard the song "I can only imagine" by Mercy Me, I was in my most challenging year of teaching 5yr olds to 18yr olds in a tiny Texas farming town. I would come home every night crying and at a loss how to help so many struggling and hurt children. It was evident from the 1st day that growing up in poverty meant entire families including young children helped their parents with daily farm chores from before sunrise and until sunset. The lyrics of this song were reassuring to me that in the far distant future I will see Jesus in all his Glory and all my heartache will be gone. But here is where my story changed, as soon as the school year ended May 2014, I became very sick. I spent all summer traveling to see doctors who had no answers for me, without any medicine to slow or stop my failing health, I was declared disabled 5 months later in October 2014. It was evident by 2015 that all my suffering was due to MCAS but it would take 3 more years before Drs finally diagnosed me. Unfortunately going untreated for 3yrs allowed the syndrome to spread into every organ except for one, my Lungs (yet). Had we started treatment for MCAS in 2014 I most likely would have put MCAS into remission, but we fear it has spread so far that remission is unlikely. Today the song "I can only imagine" represents what my mom and I fear is now in my near future. That I will be blessed to be with Jesus and free from my earthly battles. What I once believed to be in the distant future has now become my near future. A song I reached out to when I struggled with helping students, is now the same song I reach for to be comforted and know Jesus will be with me through all my suffering and beyond the end.
#Icanonlyimagine #MercyMe #Faith
#MastCell #MastCellActivationSyndrome #MCAS #MCAD #MastCellActivationDisorder
#EhlersDanlosSyndrome #EDS #EDS3 #hypermobility
#SpoonTheory #Spoonie #Spoons #spoonielife #ProfessionalPatient #InvisibleIllness #Migraine #ClusterHeadache #SuicideHeadaches #ChronicPain #ChronicFatigue #Chronicillness #ZebraStrong #ZebraStripes #zebra #spine #POTS
I’ve decided to make some posts about chronic illness myths!!! I want to touch on some topics that are often not talked about 🤫 A lot of people have the misconception that because we’re sick we can’t live happy lives. Trust me, I know how debilitating and horrendous chronic illness can be. Today I spent most of the day sleeping and taking care of bad allergic reactions. BUT I think it’s also important to teach others that illness cannot and will not take away a meaningful life from us! We overcome, adapt, and find ways to find blessings in the shadows. You beautiful, strong women are a huge blessing I would have never experienced if I didn’t get sick (and btw happy #internationalwomensday
). So please, world, don’t feel sorry for me. I don’t have a worse life, I have a DIFFERENT life. And I’m ok with that 💖 #ehlersdanlos #ehlersdanlossyndrome #eds #edsstrong #edswarrior #edszebra #zebrastrong #zebrawarrior #pots #postie #potsstrong #potswarrior #allergicreactions #asthma #mcas