Dernières acquisitions pour l’appartement en transition zéro déchet zéro plastique (et aussi de Noël 💝 plus d’infos dans ma story ! 👆) : 🌸2 bocaux en verre (pour stocker sainement mes aliments)
🌸2 pots en terre et verre à suspendre pour mes plantes dépolluantes (certaines plantes ont la vertus d’assainir l’air intérieur 😏)
🌸 Des coussins moelleux pour mes chaises de bar (ça c’est juste pour le confort de nos popotins qui n’en peuvent plus des chaises 1ers prix Ikeo 😅)
🌸 2 nappes et 4 serviettes en coton (lavables & réutilisables !)
🌸 2 accroches cactus en metal pour accrocher mes torchons.
Life with low blood pressure because of #EDS. These readings are 1 hour apart, from since I've been up this morning. Moving around doing things doesn't raise it much.
I sometimes pass out if I move too quickly ( #POTS). My heart rate stays in the 50's and 60's too.
5 years ago and today I had everything ripped out from under my feet. I lost it all- the ability to sit up on my own, stand, walk, work, go to school, live alone, see clearly, or think clearly. There is nothing like losing every ounce of your health, no tragedy that compares to the grief of losing yourself. I was introduced to a world I didn’t know existed: young people who were extremely sick with no hope in sight.⠀
Becoming ill is a fear many people have, but we assume we have the rest of our lives until we’ll have to face that fear. We have the illusion that if we live a perfect “healthy” life, we will become invincible and immune to all illness. We have the illusion of control because, to think otherwise, is a fear too insurmountable to face. So we assume that the sick must not have tried everything to get better, and we assume that sickness = elderly.⠀⠀
But let me tell you, there’s a world where people would cut off a limb with a butter knife for just a little bit of relief. There’s a world where people have done every juice cleanse, every diet, every yoga exercise, and are still sick. It’s not their fault. There’s no toxic “positive” way to spin this intense suffering so you feel more comfortable.⠀
My presence stretches people’s limited concept of a good God. How can a good God allow suffering? How come I’m not healed yet? There are days I cry out with the same questions, but most days are spent realizing that what’s good to God is far more complex than what’s good in my temporary life. God’s desire is my holiness, not my temporary happiness. He has brought hearts to Him through my suffering, and has changed mine. My sickness has helped me put on blinders that block out everything that doesn’t truly matter in life, so I can focus on God and God alone.⠀⠀
“I am not saying this because I am in need, for I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do all this through him who gives me strength.” -Philippians 4:11-13
1 51an hour ago
So things have been interesting, I got grounded for a while and thats why I haven’t been on. I’ve been having a medical problem for about a year and they are still trying to figure out what it is. I went to the er about a week and a half ago because the pain was so bad. I’m still trying to remain optimistic however and I hope they figure it out soon, they are sending me to a GI doctor to make sure everything is okay there and if that shows nothing they’ll do an exploratory surgery and check for endometriosis. I hope everyone has been doing okay❤️
5 years ago and today I had everything ripped out from under my feet. I lost it all- the ability to sit up on my own, stand, walk, work, go to school, live alone, see clearly, or think clearly. There is nothing like losing every ounce of your health, no tragedy that compares to the grief of losing yourself. I was introduced to a world I didn’t know existed: young people who were extremely sick with no hope in sight. 💛
Becoming ill is a fear many people have, but we assume we have the rest of our lives until we’ll have to face that fear. We have the illusion that if we live a perfect “healthy” life, we will become invincible and immune to all illness. We have the illusion of control because, to think otherwise, is a fear too insurmountable to face. So we assume that the sick must not have tried everything to get better, and we assume that sickness = elderly.
But let me tell you, there’s a world where people would cut off a limb with a butter knife for just a little bit of relief. There’s a world where people have done every juice cleanse, every diet, every yoga exercise, and are still sick. It. Is. Not. Their. Fault. There’s no toxic “positive” way to spin this intense suffering so you can feel more comfortable.
My presence stretches people’s limited concept of a good God. How can a good God allow suffering? How come I’m not healed yet? There are days I cry out with the same questions, but most days are spent realizing that what’s good to God is far more complex than what’s good in my temporary life. God’s desire is my holiness, not my temporary happiness. He has brought hearts to Him through my suffering, and He has shaped my own.
I no longer waste my life trying to prepare for “one day.” I no longer care about the superficial things. I don’t get worked up over disruptions in my life plan. My sickness has helped me put on blinders that block out everything that doesn’t truly matter in life, so I can focus on God and God alone. Here I receive overwhelming, overflowing joy that doesn’t run dry. ❤️ Continued in comments ⬇️
I always wondered why I walked into walls all the time and felt so out of breath when I got out of bed. .
It’s nice to finally see what I’ve been feeling on the inside since I was 10 years old.
I am so grateful that this condition has made me strong. I don’t remember a day it didn’t affect me. I’m grateful because I don’t really know anything else, so it’s my normal. And I’m grateful that it isn’t worse than it is. That I know what to expect now. This condition sometimes controls my daily functions, so I talk about it a lot. And I won’t feel bad about it. #dysautonomia#POTS#hairstylist#potssyndrome#cardioworkout#cardio#invisibleillness#grateful#strength
0 7an hour ago
Stronger than before.
I’ve had a rough couple of weeks again and I almost gave up. But giving up is something that doesn’t fit with my personality. I will never let Pots win. I will keep on fighting to live the life that I want to live. I will continue to keep on fighting and to keep spreading awareness. Humour and positivity is the only way to survive for me. So I will puke while pulling funny faces. I will cry while dancing like crazy. I will keep being me even tho there is something awful happening right now. This will pass and I’m trying to make the best out of it for now.
Here is to being strong and silly to keep on fighting
Day 20 of my #chronicillness photo challenge. Today’s topic is advice I’d give to someone newly diagnosed. .
Don’t let it consume your life. In the beginning I was completely bed bound for four months. I couldn’t even shower. I had to use shower wipes. The only time I got out of bed was to use the rest room and eat. Now I’m living in my own apartment, going to college, driving, and I’m off of heart medications and IV fluids (at least until it warms up again). Having dysautonomia isn’t the end of your life. It isn’t a death sentence. It will take time to adjust to your new life and new body. I’m still not over the fact I’m not independent anymore. I used to thrive on alone time and doing everything alone. I can’t take spontaneous drives and trips to places anymore. I always have to let someone know where I’m at at all times and if I’m okay. .
Also, don’t be afraid to research. And don’t be afraid to switch doctors around a couple times. I went through four cardiologists and two neurologists before I was taken seriously. Now my POTS is in remission while my MCAS remains active. Just don’t give up and always stand up for yourself. Doctors have degrees,sure, but no one knows your body better than you do. #mcas#pots#dysautonomia#autonomicdysfunction
My daughter is about that life. I don't know how many times she has passed out in the shower 🤔 or the bathroom, or the hall or pretty much anywhere. Loud thump=Did you drop something or was that your head? #stupidpots#pots#potssyndrome
0 21 hours ago
Morning, world!♥️ May we use today to draw nearer to our Lord Jesus and seek to glorify Him.
Today is day 4 of the "Armor of God" Bible study I am doing in my quiet time. It is soo good!! I am going at my own pace, but I am getting sooo much out of this study.
May we just seek to glorify God by living out the greatest of commandments today:
Jesus answered, “Love the Lord your God with all your heart, with all your soul, and with all your mind. This is the greatest and the most important commandment. The second most important commandment is like it: Love your neighbor as you love yourself. [Matthew 22:37-39 GNT]."
We may accidentally mess up today, but it's okay. We have the God of redemption on our side if we have trusted in our Lord Jesus to be our Savior and Lord. And if God is for us, does anyone // anything really stand a chance? So keep running to Him.
We may be going through some fierce things in our lives right now, but we don't go through them alone. As we follow our Lord Jesus, He goes with us. He goes before us. He will be our peace and give us everything we need.
And to my weary friends: Yes our Lord Jesus is definitely still working even if we don't see what He is doing. Philippians 1:6 tells us that He continues working in our lives. He won't stop. He won't give up on us. Hang in there!!
Double ankle surgery day 1 to day 13. (My toes are red from the sterile liquid thing from surgery) From wheelchair bound for 3 months to walking 3 miles in normal shoes with no mobility aids just 13 days post op. This surgery was very invasive. That hardware was sitting right in the middle of my ankle so the first week was very challenging for me. I had burning pain past my pain tolerance and wondered if it would ever ease. Well you know what? I had faith and it went away! I’m in the gym an hour a day building my strength back and walking as much as I can. This post goes out the people who are struggling with their physical health and are losing hope and strength. To the people and been fighting so long and don’t how they’ll maintain their mental strength. I’ll tell you what. It’s worth it. Keep fighting. Tell your doctors everything that’s wrong even if it’s a little thing. Most importantly remember you are a badass are you are going to get through this! I have faith in you💛 #pain#strength#chronicillness#backpain#neckpain#chronicpain#surgery#ehlersdanlossyndrome#badass#posturalorthostatictachycardiasyndrome#mastcellactivationdisorder#mcas#pots#eds#thoracicoutletsyndrome#hope
One by one we are getting your orders all ready to ship 📦 I keep reminding myself that it is only January, that we will have to ramp up for Spring. Each planter is painted to order by hand right in our little studio! From start to finish of your planter takes us 3-5 business days. Resulting in a planter made with ❤️ Side note that ship lap wall is FINALLY being painted this weekend (well no promises ha) my fav dark grey colour...it may have taken me weeks to find the time but it’ll eventually get done...key word eventually.
Guess what?! It’s snowing!!!! But also, NEW MAGNETS available NOW! I altered a previous design to hopefully help the public become more aware that people who park in handicap parking may not look like their idea of disabled. Not all disabilities are visible. We all know that so well! These are up on my shop NOW! ♥️ I hope you guys enjoy them! If you live in the path of this snow storm, stay safe this weekend 🤟🏼
Dear Body // You and I have changed so much in the past few years. We used to thrive on spontaneity, travel, those long nights with friends so perfect that time stood still. Low pain days were our norm, doctors appointments a yearly rather than weekly occurrence. Do you ever let yourself think about what would’ve happened if we never got sick? Would we have ended up doing the Peace Corps or moving to Central America like we thought? Would we still have pursued human rights activism as a career? Would you have scars from exciting adventures rather than surgeries? These questions used to make me sad, but now they bring me a sense of peace. You and I are now a team, Body, in a way I never thought possible. I love and respect you so deeply for carrying me successfully through procedures and illness and pain. Maybe we haven’t made it back to Guatemala, but your scars are a roadmap of the journey we’ve traveled. Together, we’ve discovered new depths of resilience and vulnerability, of grief and celebration. We’ve learned to celebrate the tiny wins and lean on others when things get too heavy. Most importantly, we’ve learned that we can do anything as long as we take care of each other. I promise to love you and all your “imperfections,” and I know you’ll do the same for me. My only regret is that it took illness to make me realize what an amazing being you are. I promise I’ll never forget again. Body, thanks for growing with me as we figure out this brave new world together. Here’s to many more lessons learned and challenges faced ❤️ (it would, however, be really cool if you could not do anything crazy for a while — ya girl needs a break 😘) #choosehappiness#intracranialhypertension#shuntlife
30 6046 days ago
IIH Story // The last six months have been a whirlwind of procedures, pain and, ultimately, relief. Here’s the condensed version of what the heck has been going on the last few months. Sometime in late July/early August, I woke up with a terrible headache that would stick around for quite some time. I thought it was a CCI/AAI headache, but my neck brace didn’t make any difference. My PT and orthopedist were also stumped, convinced I must’ve done something to my neck in my sleep. I kept trying my usual methods for a few weeks to no avail; I was afraid that level of pain would be my new normal until we found a treatment for my instability. Then, I woke up one morning with a wet pillow. I was very confused to find my ear soaking wet and leaking fluid down my face. This continued for about 24 hours. I had an appointment with my allergist that day and she suggested I see my GP ASAP. I went in the next day and a physician in my GP’s office voiced his concern that it was spinal fluid, then ordered a brain MRI to check for a spontaneous CSF leak. Over the next few weeks, I would take the LSAT with the worst headache of my life (and score eight points higher than my previous test), have my referral to Duke thwarted by the hurricane down there, and eventually find myself in Pennsylvania to see Dr. Liu in October. He confirmed Idiopathic Intracranial Hypertension via angiogram and high volume lumbar puncture in November, and I went in for shunt surgery on January 4th. (He believes the high pressure in my head led to leakage out of my ear. For a full list of my symptoms, check out my Diagnoses highlight.) My initial shunt placement went well - this photo was taken just hours after surgery. Unfortunately, we quickly realized my shunt was overdraining and I spent two very long days in low pressure. I had a revision on the third day (after the weekend) which sent me into high pressure. I then waited a couple more days to have a second and final revision which worked and let me go home. My 1-3 day admission unexpectedly turned into 8. Now that I’m a week postop, I can say confidently that the surgery worked and my headache is mostly gone! I still have some [cont below]
I’m sick. Like, even sicker than I thought. But you know what? My life is still mine 🤷🏼♀️ I still get to take nice photos that make me feel good about myself even while I’m waiting on hematology to schedule me for an urgent iron infusion.
Whatever the circumstances, we’re allowed to live and ENJOY our damn lives. Yes, even disabled and chronically ill people. Stop policing disabled and chronically ill bodies!!!!!!!!!!!!!!!!!!!!!!!!!!!!Stop questioning and invalidating people’s struggles just because they dress up nicely for a day or go to an event or go for a walk without their mobility devices. Our bodies and needs vary drastically from one day to the next and we should never be shamed for taking advantage of the (however brief) moments of feeling good 🌿