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#ehlersdanlossyndrome

MOST RECENT

Woken by my cats tumbling, rolling, fighting – I wonder what it's like to move freely, without considering such things as pain. Their small confident bodies crashing a path through our house. Such havoc but always something I welcome, preventing the ossification of a household with a sick person at its heart. I don't want that. Even though my body imposes a great deal that is burdensome, routine and unending – I still remember what it's like to have a house balanced differently, my younger brother living here too. I remember what it's like to live alone with PAs and carers coming in to help me. How that was at one and the same time terrifying – because I increasingly needed 24-hour care and couldn't fund it – and liberating. I am one woman who is not embracing a Grey Gardens life. It's just not what I want for myself. This sickness feels all-consuming; it often is. And yet I want the opposite of total seclusion: I want animals and outdoors and travel and people. The wheelchairs and medicines to make that happen? Whatever, that's fine. Just let me out of bed from time to time, world, whoever and whatever is listening.
This is why I want to speak up for severely affected patients who can't even gain access to treatment, & at the same time advocate within my own field – poetry and the arts – for inclusion efforts which are stunningly absent for the most part. Only people living like this can tell you what it's like, what we need, how we're shut out. Please listen.
#ehlersdanlos
#ehlersdanlossyndrome
#wheelchairlife
#ableism
#dysautonomia
#creatives
#poetsofig
#poetryisnotdead
#chronicpain
#chronicillness
#chronicfatigue
#endometriosis
#bronchiectasis
#invisibleillness
#peoplehopetribe
#sickgirlproblems
#mindbodysoul

I don’t have a tube in my nose!!! It got caught and pulled out way more than I could have put back in properly so I’m back in A+E to see about a tube change.

I really don’t want to go through this again 😩

#chronicillness #nhs #hospital #chronicallyill #spoonie #invisibleillness #gastroparesis #tubie #tubefed #nutrition #glasses #eds #edszebra #ehlersdanlossyndrome #hypo #raredisease #butyoudontlooksick #dysautonomia #pots #tachy #health #medical

PJ'S IN A HALF SHELL... I can’t believe this photo was taken 6 months ago today. Because I wasn’t coping with life/functioning successfully as a human back then (uh, unlike now 😳) some of my friends came over for an in-house going away "thing" the weekend before I flew to my new home, Los Angeles.
So there I sat all night, perched on the couch with mulled wine in hand as we played CAH, slothed around in our pajamas & ate pizza shapes.
Cowabunga.
A perfect night in if you ask me.
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Missing you guys!
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#ChronicPain #Dysautonomia #ChronicallyIll #Spoonie #ChronicIllness #Spoonies #SpoonieLife #POTS #SpoonieStrong #SpoonieProblems #SpoonieSupport #SpreadAwareness #Fibromyalgia #FibroWarrior #InvisibleIllness #EhlersDanlosSyndrome #EDS #Disabled #InvisibleDisability #EhlersDanlos #CFS #ChronicFatigue #InvisibleIllnessFighter #RareDisease #RareIllness #RareDiseases #InvisibleDisease #ChronicallyFabulous #ChronicallyAwesome

It takes a lot to keep me out of heels and bedridden. Out for the MIL’s 60th Bday.
Peekaboo EDS hypermobility in my knees. Over extending just a little there.
#ehlersdanlossyndrome #vintagestyle

Working with my acupuncturist//e-stem to try and get this symptom of eds under control. Really isn’t that awful in terms of pain... but it is quite inconvenient. 🔊sound on if you wanna hear my weird bones just do some funky subluxations/dislocations (yes, i am the Love child of a fire cracker and a pack of pop rocks) @bendy.living and I were comparing our funky fingers... yeah apparently this isn’t normal😛🌸 @onehappymastie was shooketh... ahaha i forget everyone’s fingers don’t have a mind of their own (and a deep of love of becoming a percussion instrument). #chronicallyill #chronicillness #chronicallyfabulous #chronicallyawesome #spoonie #spoonielife #spooniewarrior #spooniestrong #strong #fighter #brave #warrior #treatment #acupuncture #holistichealth #holistichealing #essentialoils #ehlersdanlos #dislocation #subluxation #crackingbones #ehlersdanlossyndrome #allnatural

Spent most of my night in emerge last night. I got a bad dizzy spell when I was getting ready for work, fainted and ended up falling and hurting my knee. In a splint for the next week for a strained/sprained ligament😓 #ehlersdanlossyndrome #ehlersdanlos #chronicillness #chronicpain #spoonie #spoonielife #emergencyroom #splint #injury #hospital

My Instagram is full of me looking amazing, doing fun things, smiling, being positive and overcoming the odds because it helps me face the daily reality of what I must do and endure to survive the daily struggles of my illness. I take over 40 medications a day, none of which are painkillers to keep my body just barely functioning. I can’t really eat food due to my paralyzed stomach so finding joy in that is gone. Seeing myself happy and creating a highlight reel helps me endure the dark days, weeks and sometimes months. ✨

It was a long road of dedication to be able to come up to Oregon to help my family and I am so happy I am not the bedridden skeleton I was just a while ago. I may never be the same person but I may be someone even better. ✨


#lawofattraction #abundance #family #ilovemysister #imblessed #positivity #oregon #oregoncoast #auntietime #roadtrip



#selflove #naturalbeauty #california
#californialiving #californiagirl #caligirl #disabledandproud #disabledandcute #zebrawarrior #edswarrior #ehlersdanlossyndrome #pots #gastroparesis #chronicillness #chronicpain #chroniclyawesome #elastigirl #bendygirl #bendysarah #bendysarahmarie

(Terrible pic!) The best part of homeschool is you can do it anywhere!! Being sick is hard enough! Being sick and going to high scBeeinghool would be hell! Choosing to homeschool has been one of my best choices! Especially for my health! #dissingdysautonomia #dysautonomiasucks #dysautonomia #pots #potsy #posturalorthostatictachycardiasyndrome #tachycardia #tachy #eds #zebra #ehlersdanlossyndrome #ehlersdanloslife #mcad #mastcellactivationdisorder #gastroparesis #gastroparesissucks #servicedog #servicedogintraining #lovemylevi #yellowlab #yellowmellow #godhasaplan #purposeinpain #keepfighting #gonnabesoproud #homeschool #highschool #senior

ABC's of CBD - Ingestion vs Sublingual

When you ingest CBD oil, it passes through the digestive system and is metabolized by the liver, eventually sending its active compounds to your bloodstream.

When CBD oil is held under the tongue for up to 90 seconds, the mucus membranes in the mouth can absorb the oil’s active ingredients. The benefit of consuming CBD oil sublingually is that the absorption process bypasses the digestive system and liver metabolization, allowing the compounds to reach your bloodstream and interact with the endocannabinoid system more quickly. For those looking for quick effects, a sublingual CBD oil product is ideal.

Link in comments

#painrelief #anxietyhelp #autoimmunedisease #scoliosis #chronicpain #endometriosis #ehlersdanlossyndrome #feelbetter #plantmedicine #cbd #cleanliving #yoga #yogainstructor #onebreathatatime #choices

The biggest news to report today is that I scheduled J-tube and port surgery! Interventional radiology will be doing them both at once in an outpatient surgery on February 2nd! Other that that I had an appointment with my new gynecologist this morning in Corvallis then physical therapy and an appointment with my EDS doctor in Portland. At my gynecologist we decided to keep waiting it out with this IUD, hoping it'll stop my bleeding and intense cramping soon but we made a plan B and C if it does not work like we hope. I will also have labs done and another ultrasound to check up on things. Physical therapy went well, we're working on strengthening my right ankle after being immobilized for 6 weeks and working on keeping my back in place because with my full feeds and fluids my backpack is 14 POUNDS. My appointment with my EDS doctor was probably the most eventful of the three. We discussed lots of things but the biggest ones were my blood sugar drops, my high resting heart rate, and the bad reaction I'm having where I got my meningitis shot. We did blood work to check blood sugar levels and insulin levels because I had a blood sugar drop when I was there, these have been happening since November but they have recently been getting worse. I get shaky, weak, dizzy and clammy, the dizziness and shaking happen when I have a blood pressure drop but this is a very different feeling. I've been noticing at my appointments that my heart rate sits around 110 when I'm sitting, 88 when laying so we're starting a medication for that (my blood pressure is responding really well to my daily IV fluids). On Monday I had to get a meningitis B shot because there have been 6 cases of it on campus since November 2016, it is required for all students on campus so I went and got it. My arm was a little sore and I had a small lump at my injection site until yesterday. Yesterday I noticed that my lump was very itchy but huge, so huge you can see it from sideways on my arm. I showed my doctor and she had never seen an injection site swell up that bad so she sent me home with instructions to alternate with heat and ice and she was going to consult with a colleague about it.

day 17: i have a few people that i follow on my personal account and private account that i won't name for privacy reasons, but definitely them and some people i follow on this account!

#chronicillness #chronicallyill #invisibleillness #chronicillnessmemes #eds #ehlersdanlossyndrome #pots #posturalorthostatictachycardiasyndrome #spoonie #zebra #potsie #ibs #irritablebowelsyndrome #gerd #sibo #asthma #allergies #anxiety

day 15: i love chocolate soymilk, toast with vegan butter and jam, organic chicken penne soup from whole foods, chicken flavored tofu from whole foods, sorbet from my local frozen yogurt shop, soymilk ice cream, and chinese food!! lol that was very vague and very specific at the same time😂

#chronicillness #chronicallyill #invisibleillness #chronicillnessmemes #eds #ehlersdanlossyndrome #pots #posturalorthostatictachycardiasyndrome #spoonie #zebra #potsie #ibs #irritablebowelsyndrome #gerd #sibo #asthma #allergies #anxiety

#sweetpotato #casserole and #roasted #brusselsprouts for dinner with the #roomie. I honestly do love #cooking, even if I don’t love cleaning up and all the standing in the kitchen wears me down. Padded kitchen mats and a very organized kitchen do help! #homecooked #fromscratch #comfortfood #chronicillness #stayathomedogmom #ehlersdanlossyndrome #ehlersdanlos #dysautonomia

Unfortunately for mommy.. Her #toothache is very very angry and all the #PainMedicine in the world isn't helping with the exposed nerve that's #MakingHerLifeHell. Did you know that #FaultyConnectiveTissue (what us #EDSers have) causes #weakenamel and #WeakTeeth that break and fall apart easily? #Unhealthy #weak and #BrittleTeeth are a huge problem for those with #EhlersDanlosSyndrome #edstype3 like Kaedin and I. :-( #toothpain #toothachefromhell #dentalemergency #sopainful #cantsleep #DentalPain #InPain #TheMorphineIsntHelping #myfacehurts #taketwoandcallmeinthemorning #poormommy
#ehlersdanlossyndrome

Now this is a new one for me; Symptom diary! My neurologist suggested I do it to keep track of how many triptans I’m taking a month. So my amazing fiancé got me this diary so I can list what my dramatic body is getting up to! I tell you this being ill business certainly keeps you busy. 😫
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Who else keeps a symptom diary?
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#chronicillness #chronicillnesses #chronicpain #eds #edstype3 #ehlersdanlossyndrome #ehlersdanlostype3 #ehlersdanlos #pots #potssyndrome #posturalorthostatictachycardiasyndrome #migraineawareness #chronicmigraine #chronicmigraines #genetics #geneticdisease #butyoudontlooksick #illness #pain #spoonie #spoonielife #dysautonomia

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