No drawings today. Been grappling with awful head and neck pain again. I keep getting choking sensations. I’m suspicious this is related to my facet joint problems and possible #cci
(hopefully I will get a definitive answer about that when we fly back to Baltimore in a few weeks to see Dr. Francomano). My neck and shoulders have been in a rock solid spasm for almost two months, despite a constant stream of muscle relaxers and physical therapy. My #dystonia
has been yanking my ribs upward, which causes even more problems in my neck. And I have a near constant headache shooting from the base of my skull through the right side of my head, as if a knife if being pushed through my brainstem and out my eye. I’m trying to rest and do what I know is helpful right now. But it sucks, to say the least. I have no energy for art today. But hopefully that will change by tomorrow.
I, like many with EDS and other chronic illnesses, deal with headaches. I suffer from migraines, and a constant pressure-like headache, coupled with constant tinnitus. There is not a single moment that I do not have a headache. As of right now, I am not getting any treatment. My doctor believes it has something to do with my Connective Tissue Disorder, but for now just said to avoid coffee, take vitamin B2, and... exercise. Ngl, I cried during that appointment, especially since I was tired of people telling me to exercise when it’s extremely difficult for me to do so. But anyway, headaches, and especially migraines, are no joke. As with a lot of chronic conditions, exercise and vitamins may help with some symptoms, but it’s often not enough, and definitely not a cure. For anyone suffering from headaches and/or migraines, I hope you’re getting the treatment you need, and if not, I pray that you will soon 🙏🏻💜
I got fabric for a weighted blanket (zebra themed for EDS/rare illnesses 😉)! All in all, I expect it to cost less than $30 — a lot better than some of the $100+ weighted blankets I’ve seen online! Instead of expensive poly-pellets, I think I’ll be using rice. Others have tried it and it worked out for them, so why not give it a go ¯\_(ツ)_/¯ I honestly can’t wait ‘till I make it. I’ve been waiting for this kind of thing for soooo long. Weighted blankets have been known to help with SPD and anxiety, which I deal with, but it can help with other conditions too, like ADD and Restless Leg Syndrome!
Mixed emotions... Very excited to FINALLY be able to get into an aquatics class but hate always having to decide between my health and school. This is my only chance to take this class because the next session is when I go back to school.
This aquatics class will start to train my body in order for POTS to have less effect on me. The water also reduces the stress on my joints.
#swimming #potsyndrome #potssyndrome #chronicillness #zebrastrong #ehlersdanlossyndrome #ehlersdanlos
♿️Topic 3: EDS Life Hacks!
EDS is Ehlers Danlos Syndrome. These life hacks won't be what you expect, because they are not "practical", but they are what has worked for me:
1️⃣Knowledge is power. Buy a book about Ehlers Danlos Syndrome. Read about it in books or websites like HMSC or EDS Society. Learn about your condition from good sources. On HMSC there are articles by Dr Alan Hakim, Dr Kazkaz and Professor Graham. Their articles will be up to date. Read about research in America on the EDS Society website. Then you know the info is reliable.
2️⃣Facebook is the enemy! What has helped me most, is staying AWAY from all EDS support groups. Also, don't just follow other "chronically" accounts on here. Follow some humour pages, quotes, nature, photography, sports pages, fashion models, whatever. Make sure your social media feed is broken up variety and not just medical accounts - this will keep you sane.
3️⃣Don't be against medication just because it is medication. Try it. If you don't like it, stop taking it, but be open to trying new things. Trying doesn't hurt. I would like to tell this to myself 2 years ago 😂
4️⃣Aloe vera is expensive and remember our condition is incurable and people get paid to say aloe vera cures things. You could spend that money on going to see a movie instead.
5️⃣On the subject of being incurable: we are in these bodies and these are the only bodies we have. Don't hate your body, it doesn't help. Love your body, it is doing its best.
6️⃣Take the time to *calmly* explain to people what your difficulties are, don't expect the whole of society to understand a rare condition. I struggle with this myself a lot.
7️⃣Also stay calm with doctors and nurses who have forgotten what EDS is. Get a medical ID card from EDS Support UK and just show it to them. They have to remember a hell of a lot of different illnesses and see a lot of people in a day, so try not to get mad at them for forgetting.
8️⃣Don't suffer in silence. If your friends and family don't understand the condition very well, and you want to vent, make a couple of EDS friends on here, who you can message for support or to have a moan ❤️(like me)
You act like it’s you against the world but it’s really just you against yourself.
When I drive, I always wear these goofy medical shades to block out most of the sunlight. I have the chronic type of migraines...too (another trail that leads straight back to #EhlersDanlosSyndrome
), which make me light and sound sensitive among other things. I’m showing my #shadesformigraine
on World Migraine Solidarity Day to raise awareness for migraine, a serious neurological disorder that causes significant pain and disruption of function that can last hours to days, not to be confused with headaches. There are 37 million people in the US that have migraine—I continue to show my medical zebra stripes by being in the less than 1% of the population who have chronic migraine, defined as more than 15 headache days and at least 8 migraine attacks per month 🤯
#MigraineAwarenessMonth #MigraineSolidarityDay #MHAM #DrPrice #DocsWithDisabilities #diversability
"My brain is an endless cacophony of noise, constantly reverberating and forcing me to think, over think and rethink. Thoughts that most people would dismiss as “silly” or “impractical” evade every fiber of my consciousness, not asking for my attention but demanding it. Quiet moments are rare and welcome, but also indicative of a much louder period to follow. To put it simply, I am never alone in my mind, I am surrounded, supported, held back, and pushed forward by a never-ending stream of ideas and thoughts – some worthless, some not. I am trapped and held hostage by my own thinking, struggling to break out."
Thank you, Jimmy, for sharing your #MyEDS
Read his story at ehlers-danlos.com/jimmym
#OCD #MentalHealth #Dysautonomia #EhlersDanlos #ChronicPain #hypermobile #hypermobility #EhlersDanlosSyndromes #EDS #EDSAwareness #hEDS #ChronicIllness #Spoonie #ZebraStrong #DazzleTogether
Loving living life on the edge with you @stina.bloom
here’s to many more adventures as we work our way through our bucket list of life👌🏻#tbt
Today, I received my #beadsofstrength
Each one of these beads represents a part of myself, and a great portion of which I keep to myself, namely my chronic illnesses and the struggles that comes with it. Numerous tests, surgery, chronic pain, depression, and so much more. Each bead also represents a victory. It shows that even with all the struggles that comes with a chronic illness, I still pushed through, and I’m still here today, going on #zebrastrong
Even if nobody can see what I’m going through, I have these beads as my own visual, to remind me that I am valid, it’s not all in my head, and that I can get through all of this. Thank you, @beadsofstrength
for doing this amazing project, helping out tons of spoonies like me 💕
My week of doctor appointments is finished!! I topped it off with my hematologist and ten (yes TEN) vials of blood. It took two veins to get it all, but we did it! This week has been exhausting physically, but emotionally I want to bust into tears I’m so happy. I feel like my doctors are finally coming together and I’m finding people who genuinely want to help and work as a team. They’re communicating with each other and me and I am so so grateful. My new allergist yesterday is a true blessing, her eagerness to figure this all out and passion and compassion are so apparent in everything she does. She’s running so many tests and filling so many gaps where my previous doctors have done me a disservice she even found an obstruction in my lungs that may not be asthma so we’re doing further testing. And guess what! I don’t have to do iron infusions! My iron supplements are actually helping enough, which is wonderful news because my iron is so horribly depleted my body needs it desperately. All that’s left to do is coordinate with my GI and work out finding a surgeon now; we’ll probably be moving forward on a Port so I can receive at home saline infusions. But that’s next week’s worries. For now, I am just so relieved for all that went so so well this week. ☺️
#spooniestrong #spoonielife #gastroparesis #mastcellactivationsyndrome #mcas #fibromyalgia #ehlersdanlossyndrome #zebrastrong
my 8th grade sketchbook. Not the happiest time in my life, but I still found things that brought me joy. Alice in wonderland continues to be my happy place, and has now developed into my favorite thing to share with the children in my life. It’s really wonderful to look back and see that, even though that time was filled with a lot of pain and turmoil, I still found things that made me happy.
Hey la Team bon #instagram
à décider de beuguer complet depuis une semaine et y'en à mare.
J'ai tenter de vous partager en story le compte que j'ai créé pour harley mais ça n'a pas marché.
Retrouvé l'actualité et l'évolution de Miss Harley sur @harley_staffy
(quand insta aura décider que je peux enfin changer de compte...)
Bonne soirée mes Gambas 🦐
One Year Ago Today
Summer Solstice of 2017, the proposal for "Runic Book of Days" was accepted by Inner Traditions. I remember vividly, because when my agent called to tell me the deed was done, I answered the phone bawling. A month of medical horror had just set in that I was in urological failure, and would be for the rest of my life. I truly couldn't see past the moment, and couldn't hold it together. She was so fucking kind, and she cried with me.
On Winter Solstice, I turned in the full manuscript. By that point I was in the throes of anxiety, having realized how much effort it took every day to manage the medical minutia, leaving me spare to do little more than drift through, because showing up wasn't a thing, yet. I couldn't comprehend how I'd get through lunch, let alone edit, promote, and fully birth this book.
Now, on this Solstice, the final edits have been submitted, and I'm here. Body is as body is, and I've had to adjust every.thing.in.my.life around that fact. But it has adjusted, and it will continue to, every day. Showing up is still subjective, and the fact that it will always be is more of a friend than I imagined.
So is, "No." Everyone has been wonderful: @zsunita @inner_traditions @describecards
Thank you. I see you.
Professor Qasim Aziz at Barts and The London School of Medicine & Dentistry has been caring for patients with EDS for many years. He has heard consistent stories of his patients’ symptoms improving with a change of diet. It’s now time to test, in a scientific study, whether changes in diet really can improve EDS symptoms – but we need to raise the funds for this to happen. Here, Professor Aziz answers our questions on nutrition and EDS.
For more information on this project, including how to donate, go to https://www.ehlers-danlos.com/edsdiet/
#EDS #elhersdanlos #Zebrastrong #HEDS #12to24 #ChronicIllness #nutrition
Nature shows us that we are all unique. I loved cycling through the olive trees this week in Puglia. Looking at all the different shapes and sizes, you can see how every single tree is different. Some of these trees are 2000 years old and yet they still stand strong. They may be asymmetrical but they are resilient. Each one has grown its shape dependent on the forces that surround it like the wind. Like us, nothing is perfectly symmetrical, our bodies adapt to force, to change, to emotional and physical challenges - but we can be resilient and strong. Strength does not come from having a perfectly balanced left and right side, it’s impossible - it comes from our ability to adapt to change and work with the forces that impact us. #zebrastrong
#movementtherapy #eds #ehlersdanlos #hypermobility #fragilebutunbreakable #pilatesforhypermobility #chronicillness #chronicpain
Qué es la musicoterapia?
“Es el uso profesional de la música y/o los elementos musicales que la componen, como el sonido, el ritmo, la melodía y la armonía, realizado por un musicoterapeuta calificado, con un paciente o grupo, en un proceso creado para facilitar, promover la comunicación, las relaciones, al aprendizaje, el movimiento, la expresión, la organización y otros objetivos terapéuticos relevantes, para así satisfacer las necesidades físicas, emocionales, mentales, espirituales, sociales y cognitivas.”
Federación Mundial de Musicoterapia
¿Qué es la musicoterapia vibroacústica?
“Es un método de la musicoterapia receptiva, que combina música denominada sedativa, que puede ser de cuencos tibetanos, gongs […] con sonidos de baja frecuencia (graves) que facilitan la percepción de la vibración en el cuerpo, con fines terapéuticos.
Escuchar el Silencio- Jorge Zain
#musictherapy #healthylifestyle #healing #cvid #health #music #tibetanbowls #zebrastrong @idfcommunity @mt.leandroc
Today’s special moments are tomorrow’s memories- Genie 🧞♂️ Today was a great day. My mom and I slept in and then we packed up the car. Then we went to the park and rode Ariel and the cars ride.
I am so happy and had a fantastic time at Disney. Just being there makes me so happy.
Surely for the next few days my body will continue to pay for all the fun of the past few days. I have already noticed an increase of my leg twitches and how often I am putting things back where they belong.
We are home now and will probably have a pretty chill day tomorrow. After we got home I sneezed 🤧 and my neck/head has been extra hurting ever since. Typically after sneezing there is a sharp pang of pain but lately the pain has been lasting longer.
I will make a post updating about my headache and what the future plans are for managing it once I get my thoughts more together.
Sheep laurel + sand beach. Life has been so adventureful lately! Switching my mentality from “I am broken” to “I am healed” has a big effect. Strength is on its way back, I’m finally sending again 💪🏼
It may not seem like a lot but the strength I have gained in my arms and body is incredible. The first picture was taken a little less than a month after I had gotten out of the hospital. I thought I knew, but now looking back, I didn’t truly realize how depleted I was... physically and mentally.
I was still pushing my body at the gym just to try and have a sense of normal and to try and to get my body to seem like mine again. I couldn’t really build strength and instead I was just exhausted. Back then I thought pushing myself to get back into the gym and to see the tiniest bit of muscle meant I was on the the right track.
Wrong. It wasn’t until I stopped, stepped back and allowed myself to begin healing the correct way that progress was actually made. Having true muscle in my body, especially my arms, isn’t just a win for my physical appearance but it’s literally what my body needs In order to hold my joints in place and to actually heal.
Pilates has been my saving grace for that. Along with other therapies and treatments, but pilates has been what my body has been craving for years. I’m not fixed and I’m not super strong -yet (although I did lift and carry out a 40lb bag of dog food all by myself for the first time in years 😉) I still have really bad days (today and the last few) but when I look at old pictures it reminds me that I have come one hell of a way. To outsiders it still may not seem like a lot or maybe even that I’m looking for attention. Both are not true. I just want to share that everyone has struggles and that just because someone may look “fine” on the outside, that doesn’t mean it to be true.
I’ve felt hopeless, alone, scared and a million other things but my goal from all of this is to somehow help people or at least help one person. Maybe to feel less alone, maybe to show them that you can literally do anything you put your mind to (with lots of hard work and dedication), maybe to have someone to talk to about things and seek advice. Who knows? I just hope to one day use this all for good and to inspire others to believe in themselves and know you can conquer anything. 😊
Found a Naturopath Doctor as a PCP. She’s freeking amazing. -
She’s doing the IgeneX Lyme panned, check for EBV, and the MTHFR gene mutation. -
In short checking for all the things that I have been begging someone to check for, for years. -
I have always believed there was an underlying condition making all my genetic chronic illnesses present themselves in such a debilitating manner, and finally someone agrees. -
They also do IV therapy so I can get hydration when I need it without having to fight the ER or urgent care! -
That’s all I know until my follow up in three weeks (these tests take a while). Even without the results though I am so thankful. -
This area may not give me the weather I want but it sure as heck gives me the doctors I need. -
I also want to thank the people who gave me the push I needed to keep fighting for more answers. After my diagnosis I was ready to give up and accept this new reality, but a few special people encouraged me to keep fighting and look further and I could not be more thankful for that! -
#chronicillness #chronicillnesses #chronicillnessupdate #spooniewarrior #thiscommunityisamazing #zebrastrong #undiagnosed #heds #mcas #potssyndrome #pots #posturalorthostatictachycardiasyndrome #igenextest #alltheblood #ivtherapy #ivlounge #friendsarethebest #igfamily