Every #Spoonie and #ChronicPain patient who don't get adequate treatment or facing difficulties getting their medications due to the CDC prescription guidelines should check out linktr.ee/safeopioids4sale Their services favor all patients and they have several options.
Absolutely obliterated what little bit of energy I had left going all the way to Emory Healthcare today just to be told my new Pulmonologist will no longer be going to the Clifton Rd. location anymore. Talk about a wasted trip! Plus, he’s all booked out at the Dunwoody office even though he wants me to follow up again in 3 months. Like what’s the point in even bothering to go have a CT scan he ordered. I’m so sick & tired of constantly being abandoned by doctors. My second Hematologist just left GA Cancer Specialists as well. Dr. Marts wants me to see the Immunologist at Emory but, honestly I don’t see the point anymore. He wants me to stop my Gammagard infusions because he thinks they’re causing an allergic inflammatory response in my system when I get them. Might have to go the SubQ route. Anyone else have experience with this? #CommonVariableImmuneDeficiency #ChronicIllness #RareDisease #Spoonie
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Excerpt from -
Gracefully Ill: Finding Peace in the Chaos of Chronic Illness
Sometimes grief is quiet & comes up at unexpected times. Other times grief is loud and powerful, and drowns put the rest of our world. What makes grief so overwhelming is that by nature, it doesn’t have a solution or a final answer. ☁️ perhaps healing might mean being able to sit with the loss. Being able to face it head on. Being able to feel it. ☁️ perhaps healing might mean no longer feeling so trapped within four walls of darkness. ☁️☁️☁️
grieving our health may not have a end point. It may be something that sometimes washes over us in giant dark waves, and maybe sometimes it will just lap gently at our toes. ☁️ but I hope we can all remember to be gentle with ourselves when grieving - and that we can be gentle with ourselves when we cry over a wound that we thought had already healed.
We grieve our losses more than once - and when we do, we can take all of the time we need until we feel a little bit lighter again. ☁️☁️☁️
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Hello fellow zebras! After much thought and consideration as to whether or not my physical and mental health could sustain the demands that come from campaigning, I’ve decided to gently jump right in. I have previously local government experience and I know that if given the opportunity, I can have a positive impact on children and adults within mot only my district, but state. My legislative goals includes access and affordability to treatment options for our vulnerable population. When elected, I would very much appreciate hearing what you like or dislike about laws relating to our community. As a neurodivergent zebra with a son who also has EDS, I want to empower others to seek office in the future. We know what our pain and mental health warriors need more than most, so why not represent one another by seeking an elected position? My webpage is transparent and open about my being both patient and caregiver so that we can break those societal barriers that too often assumes that we can’t be contributing members of our communities - we CAN. Should you wish to make a small donation to launch my campaign efforts, it would be greatly appreciated; I’ll need signs, handouts when door-knocking (yes, I’ll remember to hydrate and pack compression stockings!), and mailers. The link is here: secure.actblue.com/donate/friendsofshainasmith #EhlersDanlosSyndrome #PosturalOrthostaticTachycardiaSyndrome #ADHD #Spoonie #neurodivergent #zebrascanruntoo
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On average, how many ‘spoons’ do you start the day with?
Today, I woke up with half of my normal amount. 😪 #Spoonie #ChronicFatigue #Fibromyalgia
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was listening to a podcast this morning 🎧and they mentioned something along the lines of (this is totally reworded as i already forget) "what is everything right now is okay?" or "what if right now you're okay and for this moment, everything is okay?" ☁️i found this to be super comforting. i know it can sound a little woo woo and like logical mind comes and says "it's not though" or "so many things are not figured out or are not okay right now" or "you have so many things to do that are stressful!" but what about just like for the moment - cant everything maybe be okay? ☁️meditation hasnt been my calling - and being in my body in that sense, as sometimes being "in my body" makes me very aware of my fast heart beat or exhaustion or *too* focused on my breathing so i start feeling like i can't breathe (haha) -- or even triggers that air hunger sensation because with dysautonomia, breathing isn't always so easy to regulate! but for me, painting, doodling, drawing - all of these are my form of meditation and taking mind/body breaks. ☁️☁️this was a big circle i promise it relates! i think that it can be kind of calming and meditative to just think "It's okay right now." a this teensy tiny moment in time. or this big moment in time - whichever resonates. and maybe when hard things come, "i'll figure this out" or "i'm okay for now, i'll figure out tomorrow when it's tomorrow" and even when not feeling okay, maybe just telling your body that it's safe - it is okay, and you are there rooting for it? ☁️☁️just pondering - would love to know what you think about this sort of focus on the now, but really just reassuring yourself that "you got this!" ? and also holding space for the moments when it's not okay right now, and when this isnt what you need in the moment to support yourself. i think there's a time & place & moment for anything and everything - so do whatever brings you the most peace, comfort, or strength ☁️🌵✨
#Dysautonomia #ChronicFatigue #encouragement #MastCellActivationDisorder #Spoonie #Hope
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Just wanted to reach out to those who might need this to remind them as I do sometimes too. #MightyTogether #MentalHealth #Spoonie ##Support
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Does anyone ever get sick of mean-welling loved ones constantly telling you to rest. I got so mad today. Rest isn’t going to fix this, and rest is not correlated to my fatigue. Sometimes I could sleep only 4 hours and feel great. Other days I don’t even have choice to go anywhere other than from the couch to the bed and vice versa. Stop telling me to rest! I’ve been in bed for over 24 hours! I want to get up and water my plants, go outside and breathe in the fresh air, or get the housework done that just keep piling up. Rest is not a choice for me, some days it even feels like my captor. #Spoonie #Lupus
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I completed this piece of artwork last night. “You don’t have to be perfect to be amazing!” It’s a scratch off so it’s much easier on my joints than coloring. I purchased it off of Natural Life. It’s an entire book but, this in just the second one I’ve done. It only took me about an hour to complete because I’m still a perfectionist. I’ve missed being able to create so, this enables me to do that. #DistractMe #Spoonie #ChronicIllness #ChronicPain #ChronicFatigue #MentalHealth #Depression
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I completed this piece of artwork last night. “You don’t have to be perfect to be amazing!” It’s a scratch off so it’s much easier on my joints than coloring. I purchased it off of Natural Life. It’s an entire book but, this in just the second one I’ve done. It only took me about an hour to complete because I’m still a perfectionist. I’ve missed being able to create so, this enables me to do that. #MightyArt #DistractMe #Spoonie #ChronicIllness #ChronicPain #ChronicFatigue #MentalHealth #Depression
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