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Saw dr Carrol today!! Scheduling a epidural blood1669306861193882472

Saw dr Carrol today!! Scheduling a epidural blood patch as soon as possible and then try and get the CT myelogram the day before so i won’t be in too much pain!! Looks good for the next couple months!! #bloodpatch#epidural#csfleak#pain#standford#eds#spoonie#disabledandcute#disability#support#olaf#selflove

Jenna Malcolm ☾ (@jennaaleida) Instagram Profile Photojennaaleida

Jenna Malcolm ☾

Day one in the bag!!! Currently in recovery and wa 1669070277297970483

Day one in the bag!!! Currently in recovery and waiting to head back to the hotel then finish off the rest of the procedures tomorrow.Everything went well today, just in some expected pain but nothing I can't deal withTHANK YOU everyone for the kind words, prayers, and love!!! I am so appreciative to have such an amazing support systemI love y'all so much and continue to ask for prayers as I continue tomorrow!Thank y'all again!A special thank you to my parents, they sacrifice time and money and stress just to put me through these treatments, and without them I could never ever make it through.I love y'all to the moon and back and y'all are my strength. ️️

glutenfree.wanderlust.travel (@glutenfree.wanderlust.travel) Instagram Profile Photoglutenfree.wanderlust.travel

glutenfree.wanderlust.travel

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MOUSSAKAHome made moussaka, ready to go in the oven one last time..Or a piece of itDon't you just love it when almost the entire recipe is naturally gluten free?! Just the cheese sauce on top had to be changed. And even in that, I still follow the recipe, using Schär flour to make the roux.Now keep your fingers crossed that I can sit up long enough to eat something like this.. otherwise I'll be feeding the freezer.#glutenfree#glutenvrij#ncgs#homemade#moussaka#fromscratch#aubergine#cheese#lekker#spoonie#gf#spoonielife#celiacfood#crohns#headache#lactosevrij#lactosefree#csfleak#weloveschaer#schearglutenfree#schär#glutenfreecooking#glutenvrijkoken

Christine (@chr.lan) Instagram Profile Photochr.lan

Christine

Mornings are rough. Especially mornings when my bo 1668310323990280718
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Mornings are rough. Especially mornings when my body is being extra uncooperative. My body takes quite a while to get moving after waking up, and it's usually one of my most intense pain periods of the day. Joints like to try to dislocate at night, and usually my muscles will spasm around it being out of place, so it all needs to be loosened up, and reduced.After getting the kids ready for school (and failing to get one of them to eat his breakfast today ), and driving them there, I often have to lay down in the parking lot for anywhere from 15-45 minutes so I can drive home, where most days, I end up back in bed so I'm able to do the two pickups to get the kids home.Extra bad days like today make me sad and angry. If any of my doctors would have taken me seriously when I mentioned joint issues (or any other symptoms) previously, would I be less affected now? Why doesn't the military have more support systems in place for sick adult dependants (especially sick adult dependants with disabled kids)? What must I have done in this, or a past life to earn the privilege of being so utterly incapacitated with no support system, and have to fight this on my own?I try not to indulge in pity parties too often, because I find them to be like quicksand, and generally not helpful. Some days, I allow myself to wallow for a while to get it out of my system, and that's okay every once in a while, I think.Keep fighting, zebra friends.#ehlersdanlossyndrome#eds#heds#pots#mcas#spoonie#mastcellactivationsyndrome#mastcelldisorder#mcad#dysautonomia#hyperpots#csfleak#zebra#zebrastrong#realtalk#invisibledisability#militaryspouse#notalldisabilitiesarevisible

Kari Russell (@chronically_kari) Instagram Profile Photochronically_kari

Kari Russell

Uuuugggggghhhhhhh. I have what seems to be a high1667734809319268992
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Uuuugggggghhhhhhh. I have what seems to be a high pressure headache. My head feels like it’s going to explode and my ear feels so full. Full of a screwdriver. My headache doctor is having a hell of a time finding ANY anesthesiologists around here that will do a blood patch. He’s almost as frustrated as I am; he’s from the Mayo Clinic (might’ve mentioned that) so dealing with the doctors around has been frustrating. Like I was the first patient ever to get an MR myelogram at the hospital here. He said they did them all the time at the Mayo Clinic. Anyway, I hope he finds someone to patch me, soon. This sucks.---#chronicillness#chronicpain#spoonie#ehlersdanlossyndrome#ehlersdanlos#connectivetissuedisorder#pots#posturalorthostatictachycardiasyndrome#dysautonomia#migraine#migraines#migraineur#csfleak

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Dealing with chronic illness doesn’t always help you to feel beautiful.... When your constantly in pain or sick you don’t always like the way you look in the mirror, or pictures... yesterday my friend @brimendonsaphotosused me as a model for her photography class... Everytime I look at these pictures I remember what it’s like to feel beautiful.. I remember what it’s like to love my smile, my eyes... We are all beautiful no matter what illness, no matter what disability we are overcoming. Never forget your beauty#beauty#chronicillness#beautiful#love#selflove#photoshoot#pain#disability#disabledandcute#spoonie#eds#csfleak

Daniel West (@danielbwest) Instagram Profile Photodanielbwest

Daniel West

The last few days have been some of the most #pain 1666222733368092664
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The last few days have been some of the most #painful , #challenging , and #frustratingI've been through since probably February of this year; that is of course excluding the #csfleak , that was its whole other can of worms. It's been a year since I got diagnosed with EDS in December of 2016. I've learned so much since being Dx'd, but still have a couple truck loads still to learn about #ehlersdanlos . In a way, you've been a blessing in disguise, helping me understand the struggles I experienced as a kid. EDS isn't all black and white. It's colors mixed together that cause #chronicillness#patientsto feel great one minute, and terrible and scared the next. The next time you see a person with an #invisibleillness , remember, it's not all black and white. #zebrastrong#spoonie#dysautonomia#ehlersdanlossyndrome#butyoudontlooksick#mcad#mcas#tmj#chronicpain#ibs

Diana Weger (@dianaweger) Instagram Profile Photodianaweger

Diana Weger

We both felt good today about Dr.Schievinks plan f 1665812475532522300
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We both felt good today about Dr.Schievinks plan for my spinal cord Dural repair! #csfleak#csfleakwarrior#medicaldisaster#stillhopeful

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This is katie. She’s my new “support” guinea pig until I get my support dog... Shes only a tad bigger than my hand and just the cutest thing!!! #guineapig#cutie#pain#supportanimal#csfleak#eds

Diana Weger (@dianaweger) Instagram Profile Photodianaweger

Diana Weger

Crossing my fingers and praying with everything I1665523857899322762
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Crossing my fingers and praying with everything I have that this man can help me get my life back!!! #csfleak#csfleakrepair