❗️EDIT: Feel free to pipe up and ask for a card too! 💌 I have so many to make and so few to send to! 😭
No card today because I don’t want to spoil it for @lilybulb
😋 So here’s my @simonsaysstamp
haul I got in today 🤩😍 Unfortunately one of the @heroarts
sets had a defective stamp (it was sliced in two 😳) but I contacted Simon customer service so here’s hoping they can fix it 🤞
Got this in the mail today from one of my mentors. It’s funny how you get the thing you need the most when you least expect it.
LOVE IS ALL YOU NEED and it’s there, all around you!
Thank you @inspired.oil.life
for the reminder. 💜💜💜
Mondays require comfy scrubs, comfier shoes, strong coffee, and kisses from kitties. 💫
To all my spoonie fam struggling through this Monday, I feel you 😓 Hang in there, take it easy, and do what’s best for your body. Caffeine also helps ☕️ What keeps you going through a really bad health day? #qotd #choosehappiness #spooniestrong
Keeping a sick kiddo entertained and isolated is a full time job!! Fingers crossed this is the last cold for this season (7th one). 😳. Redecorated the bedroom with shimmering mermaids, sporting a new glittering Frozen dress, and some arts and crafts with rhinestones! That’s because SPARKLE is Shelby’s favorite color!!! #fulltimerv #vanlife #zebrastrong #lemonadelassies
Coziest day ever!! Thanks to wonderful @chronicloveclub
for hosting an awesome giveaway. I have been snuggling up with these items all week 💘 The beautiful blanket is from @bravesoulblankets.
It’s so fuzzy and it’s dysautonomia awareness colors! I also received this awesome eye mask and sinus pillow that you can heat up from @forever.oh.so.crafty.
Thankful to my fellow spoonies out there who continue to surprise me with their kindness and generosity! ❤️
Keep fighting my darlings. Know that I will always fight beside you. Always reach out to me if you need a hand.
When you’ve been working all day at a conference and trying to answer emails at the same and you get busted having a sneaky bite to eat 😏 you can buy our merchandise here: https://www.customink.com/fundraising/zebrastrong
I used to hide what I was going through from all my friends because I figured it would scare them away. I noticed myself drifting away from friends as they started questioning why I was never at school, always going to the dr, and never at school functions. However, this year I made the decision to let my friends know all the details. They deserve to know what’s going on. Do they completely understand?? No, that’s why I have this IG!! But I have grown sooo much closer to my friends because we no longer have this big elephant in the room. When I’m not at school, I’ll get texts of what the homework is without even asking. If something’s going on, I no longer feel like they “won’t get it” because I have taken the time to educate and explain! So, I highly encourage you to TELL YOUR FRIENDS ABOUT YOUR STRUGGLES! If they aren’t understanding, they aren’t worth it. But I bet you will be pleasantly surprised by the extra love you can receive 😘 #ehlersdanlos #ehlersdanlossyndrome #eds #edsstrong #edswarrior #edszebra #zebrastrong #zebrawarrior #pots #postie #potsstrong #potswarrior #allergicreactions #asthma #mcas
Whether you are seeking support, need help understanding your PI or want resources on explaining PI to others, IDF is here to help. #idfcommunity #zebrastrong
💫💫💫 “Dime cómo respiras y te diré cómo vives”. Esta es una frase muy ilustrativa que viene sencillamente a decirnos, que nuestras emociones, nuestras ansiedades y ritmos de vida, determinan directamente la respiración. Pensemos por ejemplo cuando sentimos miedo, cuando algo nos impacta y nos embarga la preocupación: lo primero que hacemos es cortar la respiración a nivel de plexo solar, dificultando enormemente la correcta absorción del oxígeno.
Y es que lo queramos o no, los hábitos de las sociedades actuales no benefician en absoluto nuestra salud… la prisa, la preocupación, provocan que nuestra respiración sea rápida e incompleta, consiguiendo que solo lleguemos a aprovechar una pequeña parte de nuestra capacidad pulmonar, impidiendo una óptima oxigenación y por defecto, dificultando los procesos metabólicos que nos ayudarán a mantenernos jóvenes y con un correcto estado de los tejidos de nuestro organismo. Debemos tenerlo en cuenta.
Se ha demostrado científicamente que el mejor tipo de respiración existente capaz de calmar nuestra respiración y aliviar tensiones, es la diafragmática: relaja los músculos y fomenta la concentración. Y no sólo eso, este tipo de respiración purifica el sistema respiratorio al expulsar el aire viciado de los pulmones oxigenando así los glóbulos sanguíneos. Es el mejor ejercicio de respiración que existe, psicológicamente, la respiración diafragmática induce al desarrollo de la confianza en sí mismo, aumenta la energía psíquica y estabiliza el estado de ánimo.
#breathe #yoga #streching #yogatime #healthylife #cvid #zebrastrong
Good news! I received a message from Dr Afrin, my mast cell dr, that we caught an elevated blood histamine level in my most recent labs. When I did the blood draw at the lab I had a mast cell degranulation and flushed all over my arms chest and neck, felt tightness in my throat and felt dizzy / discomfort with feeling of doom. So I was hopeful because of this mast cell reaction to the blood draw, we would actually catch something and we did! Yes it’s weird to celebrate catching something wrong with your body in a test, but in MCAS it’s hard to catch these elevations.
This helps solidify my diagnosis. I’m very interested to see how the 24hr urine results will read. Since I had the reaction to the blood draw I decided to start the 24hr urine right after in the hopes of catching more elevations due to the reaction.
This elevation also is giving me some thoughts about the reflux issues I have been experiencing lately and the possible ties to histamine overload in my body. I have been off all antihistamines for a few months now, but looks like I need to either get back on or figure out other ways to lower my histamine levels. This could be issues with my body not being able to digest foods properly, which antihistamines would never really fix.
This picture is a throwback to almost 8 years ago, when we took a camping trip to beautiful Big Sur and spent a week camping in Andrew Moleras State Park. To this day, it remains one of my favorite places.
Maybe you can't tell from the picture, but I was struggling with severe health problems, and just finding the courage to go on vacation with my sweetheart (now my husband) was such a struggle for me.
But I went anyway, and was, and still am, so glad I did.
I've been to my fair share of state and national parks, but I have to say that Andrew Moleras is particularly lovely not only due to the natural beauty and the wildlife but because of the peace and stillness within the campground, which is entirely car-free (the parking lot is about a mile's walk away).
Someday I'm sure I'll retun to this beautiful wild place of blue skies, beautiful coastline, rugged mountains, hot springs, otters and chipmunks!
I’m so happy two Zebras are off to their first owners already! 🦓🖤
Well, some good news and bad news.
Good news: I found an amazing doctor who agrees that my SI joint is most likely causing my problems. I have seen him before, and he actually tested me for EDS (Beighton scale), so he remembered me and was appalled that doctors don’t listen to me or don’t want to help me. He wants to do an SI joint injection, and prescribed Tramadol until then to help with the pain. The Tramadol isn’t working, so I’m going to call his office and ask if I can get something stronger.
Bad news: I also saw my pcp that day, and he basically disregarded my back pain as nothing, because I didn’t agree with the doctor he sent me to for my back, because he did his residency with him. Before he left, he came over to ‘examine’ me, which consisted of him basically punching my lower back with his knuckles. Not tapping or lightly knocking, but like you would pound on a door to get someone to open it. Yeah, he did that, and I was in the worst pain of my life that night. We’re talking my whole lower back was in a spasm and I couldn’t move. So I’m getting a new PCP🤐 #ehlersdanlossyndrome #eds #hEDS #eds3 #spoonie #spoonielife #chronicillness #chronicpain #invisibleillness #careaboutrare #zebrastrong #zebrawarrior #edswarrior
😍 Hello la Team Gambas
Je suis vraiment désolé je suis plus qu'absente depuis quelques temps mais je fait de mon mieux. Encore une fois ma santé ne me permet pas de faire tout ce que je souhaite en une journée ou une semaine.
En plus avec ce téléphone qui fait des photos pourri dégueulasse c'est pas super... Quand je vais aux ecuries et que toutes mes photos sont foirées ca fait grave chier. 🐎 Bref voici une petite video de Gros poney et Scintilla au manège.
Des bisous la Team 😘💋
Cardiologist appointment @ Alfred Health Caulfield. Very much like my new cardiologist as she didn’t put me on any medication, which is what I wanted. If I had wanted she would have, but she agreed with me. Maybe later I’ll need it, but right now it will just be more trouble than help. It’s really is just amazing to have the best doctors, who also listen and respect my opinion. Got another ECG today (I think I have already have 10 since December).. and have both a 24 hour halter and another echo (ultrasound) to do. Will also be doing full autonomic testing at Monash. Creepy waiting room... I was the only patient.. all the doors were open.. and there was nobody there. I actually thought I was in the wrong place! Then a doctor suddenly just turned up and knew who I was.. suppose because I was the only one there. 🙄 When you’re used to full waiting rooms.. and most rooms with doctors.. this is a little twighlight zoney 😂🤣😂 😳 #hospitalwaitingrooms #waitinginwaitingrooms #alwayswaiting #bringabook #eds #ehlersdanlossyndrome #edsawareness #ehlersdanlos #zebrastrong
🦓💪 #cardiovascularhealth #autonomicdysfunction #hearthealth
The sunshine today made me think spring might actually be here soon! Anyone else excited for spring? .
Did you know I sell more than just stickers, I sell tapestries, mugs, pillows, notebook, and more! Check out the link in my bio to see everything!
Made mini lemon meringue pies with Zeus
Last night we went to watch my cousin perform I the play Grease (he was great.) Before we got there my mom was pushing me in the stroller wheelchair (Wheelie is still at the wheelchair place) and hit the curb and I fell out. So I was in a lot of pain last night and had a stiff neck tonight.
We also forgot my “I cannot hear you phones” so I watched with my ears covered.
Does anyone else humm in crowded areas? It seems to calm me. Also, I’ve noticed that I feels stressed in crowded or loud or bright places and the humming helps me not get really moody.