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#Chronicpain medias

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I may be losing my uterus but I’m (hopefully) regaining the better part of my life. And I’m so incredibly fortunate to be the Auntie to five incredible little humans whose parents are generous enough to share them with @dereklanger and I whenever we need our fix. .
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#endometriosis #adenomyosis #surgery #womenshealth #health #spoonie #spoonielife #spoonieproblems #endowarrior #sickgirlsclub #surgerypreparation #colonsurgery #hysterectomy #hysterectomyprep ##writersofinstagram #invisibleillness #chronicillness #chronicpain #tensunit #flareup #lesions #hystersister #roadtrip #travelalberta
I may be losing my uterus but I’m (hopefully) regaining the better part of my life. And I’m so incredibly fortunate to be the Auntie to five incredible little humans whose parents are generous enough to share them with @dereklanger and I whenever we need our fix. . . . . . . . . #endometriosis  #adenomyosis  #surgery  #womenshealth  #health  #spoonie  #spoonielife  #spoonieproblems  #endowarrior  #sickgirlsclub  #surgerypreparation  #colonsurgery  #hysterectomy  #hysterectomyprep  ##writersofinstagram  #invisibleillness  #chronicillness  #chronicpain  #tensunit  #flareup  #lesions  #hystersister  #roadtrip  #travelalberta 
Great question! I’m struggling these past few weeks with my medication regimen. There are some medications that you can’t get out of taking without a backup plan. I’ve tried to get off my meds several times since my last surgery and each effort has been disastrous and set me back tenfold. I feel like I’m starting to improve functionally even without fluids. I think I’m at the never looking back point when it comes to central lines and midlines. This is in part due to the fact that testing showed I have blood clotting issues—one of the reasons IV fluids may have helped me may have actually been the multiple shots of blood thinners I had to inject to keep my tubes cleared. I’ll be starting daily aspirin and if my blood test results come back consistently abnormal again in two months we’ll start me on prescription blood thinners. In the meantime I was given my medical marijuana license and I’m hoping that will help ween me off the rest of my pain medication. Massage, rest, staying out of places that could put me in contact with potential infections are also tools and precautions I’m taking to get things under control. It’s journey, but my spirits are high 😁 it’s a fucking wonder what the freedom to take a hot bath ten times a day can do for a woman who had bandages and tubes in her chest and arms for the last five years. #chronicillness #immunedeficiency #dysautonomia #pots #rare #patients #ports #survivingandthriving #medicalmarijuana #massage #chronicpain
Great question! I’m struggling these past few weeks with my medication regimen. There are some medications that you can’t get out of taking without a backup plan. I’ve tried to get off my meds several times since my last surgery and each effort has been disastrous and set me back tenfold. I feel like I’m starting to improve functionally even without fluids. I think I’m at the never looking back point when it comes to central lines and midlines. This is in part due to the fact that testing showed I have blood clotting issues—one of the reasons IV fluids may have helped me may have actually been the multiple shots of blood thinners I had to inject to keep my tubes cleared. I’ll be starting daily aspirin and if my blood test results come back consistently abnormal again in two months we’ll start me on prescription blood thinners. In the meantime I was given my medical marijuana license and I’m hoping that will help ween me off the rest of my pain medication. Massage, rest, staying out of places that could put me in contact with potential infections are also tools and precautions I’m taking to get things under control. It’s journey, but my spirits are high 😁 it’s a fucking wonder what the freedom to take a hot bath ten times a day can do for a woman who had bandages and tubes in her chest and arms for the last five years. #chronicillness  #immunedeficiency  #dysautonomia  #pots  #rare  #patients  #ports  #survivingandthriving  #medicalmarijuana  #massage  #chronicpain 
I went and saw a musical with my best friend today and had a good time! I even ate a snack in public (very big fear), wassup.💃🏻It would’ve been better if I wasn’t having such a bad pain day- I’ve had a killer headache (tension headache that morphed into a migraine) since I woke up this morning and nothing got rid of it except a hydrocodone, but even then it came back stronger a couple hours later. I try hard every single day to hide the constant pain I am in from my fibromyalgia and osteoarthritis because of not wanting to complain or impact the fun or the mood or seem dramatic or whatever, but god damn, when I’m having a bad pain day it’s hard to focus on anything other than how badly everything hurts and not feel frustrated when I hit a brick wall in my treatment/management of it. Seeing a new rheumatologist soon and holding on to not further self-medicating by the skin of my teeth.🤕Gonna take a hot bath and try and sleep it off. Hope you’re all having a good weekend.💖
I went and saw a musical with my best friend today and had a good time! I even ate a snack in public (very big fear), wassup.💃🏻It would’ve been better if I wasn’t having such a bad pain day- I’ve had a killer headache (tension headache that morphed into a migraine) since I woke up this morning and nothing got rid of it except a hydrocodone, but even then it came back stronger a couple hours later. I try hard every single day to hide the constant pain I am in from my fibromyalgia and osteoarthritis because of not wanting to complain or impact the fun or the mood or seem dramatic or whatever, but god damn, when I’m having a bad pain day it’s hard to focus on anything other than how badly everything hurts and not feel frustrated when I hit a brick wall in my treatment/management of it. Seeing a new rheumatologist soon and holding on to not further self-medicating by the skin of my teeth.🤕Gonna take a hot bath and try and sleep it off. Hope you’re all having a good weekend.💖
#MidnightMadness

We often get hung up on all the wrong things 😊😳 Life’s already hard, let’s not complicate things.  Just Do You, Be You, Love You! 
Night all .. stay blessed ❤️ Love ❤️ always, #FatRoni .
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#FitRoni #FitbutAlwaysFat #fitness #Health  #fat #chrons #jazzercise #gastricsleeve #nutrition #TheNewJazzercise #gratitude #happy #love #hrc #lgbqt #chronicpain #chronicillness
Sorry we’ve been gone for so long. My girl and I went to visit a friend! We had a blast. The dog on the left is Xiao Wei and the dog on the right is Beag. Can’t wait o go spent some more time with my friends! Also please support our friend and check out her awesome book “As a Dog Thinketh” by Monique Anstee 🐾partners🐾 @2puppies1person @serviceherders @sd.harley @journeyofaservicedog @remy.the.curly #servicedog  #servicedogintraining  #invisbledisability  #respectthevest  #workingdogsofinstagram  #invisibleillness  #spoonie  #fatigue  #chronicpain  #dogtraining  #mobilityharness  #cute  #puppy  #workingpuppy  #pots  #donotpet  #generalizedanxiety  #workingdog  #SDiT #depression  #flandoodle  #potssyndrome  #psychiatricservicedog  #medicalalert  #helperdog  #tasktrained  #notalldisabilitiesarevisible  #servicedogsofinstagram  #doodle 
Being normal people sick is awful... There’s not enough swear words for me to explain how much it sucks to be chronically ill AND get normal people sick. 
#spoonie #spoonieprobs #spoonielife #chronicallyill #chronicillness #chronicpain #gerd #eds #hEDS #pots #asthma #ehlersdanlossyndrome #posturalorthostatictachycardiasyndrome #sickandtiredofbeingsickandtired #medicine #sick #sickkid #feedingtube #tubefeeding #tube #gastroparesis
I wish I had more positive things to say today, or yesterday or even tomorrow. Sometimes you just have to have the bad day and fall apart so you remember just how strong you really are. Life isn’t going to go the way you planned. If it did, we’d all have everything we ever wanted. So just be grateful that things aren’t worse. ************************************
#anxiety #aspiringphysiquecompetitor #weightloss #womensphysique #tattoos #inkedmom #inspiration #invisibleillness #ptsd #pregnant #gymrat #fitfam #fitpregnancy #fitspo #fibromyalgia #depression #chronicpain #chickswholift #climentipartyof5 #chickswithtattoos #babynumber3 #bodybuilder #bodybuilding #momof3 #minihulk #motivation #momswholift #momswithtattoos #34weekspregnant #fromthegroundup
I wish I had more positive things to say today, or yesterday or even tomorrow. Sometimes you just have to have the bad day and fall apart so you remember just how strong you really are. Life isn’t going to go the way you planned. If it did, we’d all have everything we ever wanted. So just be grateful that things aren’t worse. ************************************ #anxiety  #aspiringphysiquecompetitor  #weightloss  #womensphysique  #tattoos  #inkedmom  #inspiration  #invisibleillness  #ptsd  #pregnant  #gymrat  #fitfam  #fitpregnancy  #fitspo  #fibromyalgia  #depression  #chronicpain  #chickswholift  #climentipartyof5  #chickswithtattoos  #babynumber3  #bodybuilder  #bodybuilding  #momof3  #minihulk  #motivation  #momswholift  #momswithtattoos  #34weekspregnant  #fromthegroundup 
Hope everyone had an awesome Canada Day!! And to our non Canadian friends we hope you had a good Sunday! My girl and I went downtown, we met a @padsdogs dog in training and a @caninecompanionsclub dog too!  Hay check out my new harness we will use it lots this summer! It’s super comfy! 🐾partners🐾
 @2puppies1person 
@serviceherders
@sd.harley
@journeyofaservicedog 
@remy.the.curly 
#servicedog #servicedogintraining #invisbledisability  #respectthevest 
#workingdogsofinstagram #invisibleillness #spoonie #fatigue #chronicpain #dogtraining #mobilityharness #cute #puppy #workingpuppy #pots #donotpet #generalizedanxiety #workingdog #SDiT#depression #flandoodle #potssyndrome #psychiatricservicedog #medicalalert #helperdog #tasktrained #notalldisabilitiesarevisible #servicedogsofinstagram #doodle
Hope everyone had an awesome Canada Day!! And to our non Canadian friends we hope you had a good Sunday! My girl and I went downtown, we met a @padsdogs dog in training and a @caninecompanionsclub dog too! Hay check out my new harness we will use it lots this summer! It’s super comfy! 🐾partners🐾 @2puppies1person @serviceherders @sd.harley @journeyofaservicedog @remy.the.curly #servicedog  #servicedogintraining  #invisbledisability  #respectthevest  #workingdogsofinstagram  #invisibleillness  #spoonie  #fatigue  #chronicpain  #dogtraining  #mobilityharness  #cute  #puppy  #workingpuppy  #pots  #donotpet  #generalizedanxiety  #workingdog  #SDiT #depression  #flandoodle  #potssyndrome  #psychiatricservicedog  #medicalalert  #helperdog  #tasktrained  #notalldisabilitiesarevisible  #servicedogsofinstagram  #doodle 
BIG NEWS!!!!!! So allie is finally getting her shit together an building a website for people with EDS and chronic illness by people which EDS and chronic illness with quality information beyond “bendy and bruisey” so far I have about Eds, fun stuff that comes with Eds, other helpful websites, news on EDS (which will all be things after I launch the site), a list of the few docs I’ve seen in DC, and the PT I had in KY (soon with reviews after I get info done), products that improve quality of life, OTC medicine that might be good, bracing and taping info, and PT that can be done at home, all with reviews beyond “actually gave me antibiotics for strep” and commenting that can be done by other spoonies who did the thing, or saw the doc. 
I for one am sick and tired of spending money on seeing doctors that don’t take Eds seriously, PTs who “pain is gain”, spending $$$ on braces that one person likes but not for the reason I need it. My ultimate goal for this site will be to have a full community of people reviewing products/doctors/PTs/tapping methods so that people can see why people like XYZ and if that’s an issue that you have and if you feel that it actually will (bought wrist braces by recommendation of a doctor, I hate them because they don’t let me move my fingers and dig into my skin, so that’s 20$down the drain but LOVE the one another gave me because I can move my fingers and it doesn’t hurt my skin). Eventually and with help I would love to expand to other lesser known chronic illnesses but can only focus on Eds right now (and I know about it). If anyone would like to help with the site please PM me, especially if you want to write informative info on EDS, parts of it, and problems it causes

Of course this doesn’t replace a doctor but can help people get their shit together and learn and figure out what actually might help them personally. 
#eds #ehlersdanlossyndrome #ehlersdanlos #chronicillness #chronicpain #chonicallyill #pain #doctors #mobility #disability #disabled #disability #syndrome #cripple #cripplepunk #cpunk #crippled #chronicfatigue #warriors
BIG NEWS!!!!!! So allie is finally getting her shit together an building a website for people with EDS and chronic illness by people which EDS and chronic illness with quality information beyond “bendy and bruisey” so far I have about Eds, fun stuff that comes with Eds, other helpful websites, news on EDS (which will all be things after I launch the site), a list of the few docs I’ve seen in DC, and the PT I had in KY (soon with reviews after I get info done), products that improve quality of life, OTC medicine that might be good, bracing and taping info, and PT that can be done at home, all with reviews beyond “actually gave me antibiotics for strep” and commenting that can be done by other spoonies who did the thing, or saw the doc. I for one am sick and tired of spending money on seeing doctors that don’t take Eds seriously, PTs who “pain is gain”, spending $$$ on braces that one person likes but not for the reason I need it. My ultimate goal for this site will be to have a full community of people reviewing products/doctors/PTs/tapping methods so that people can see why people like XYZ and if that’s an issue that you have and if you feel that it actually will (bought wrist braces by recommendation of a doctor, I hate them because they don’t let me move my fingers and dig into my skin, so that’s 20$down the drain but LOVE the one another gave me because I can move my fingers and it doesn’t hurt my skin). Eventually and with help I would love to expand to other lesser known chronic illnesses but can only focus on Eds right now (and I know about it). If anyone would like to help with the site please PM me, especially if you want to write informative info on EDS, parts of it, and problems it causes Of course this doesn’t replace a doctor but can help people get their shit together and learn and figure out what actually might help them personally. #eds  #ehlersdanlossyndrome  #ehlersdanlos  #chronicillness  #chronicpain  #chonicallyill  #pain  #doctors  #mobility  #disability  #disabled  #disability  #syndrome  #cripple  #cripplepunk  #cpunk  #crippled  #chronicfatigue  #warriors 
It’s one of those “I can’t breathe when I lay down” nights. I went to school for one day and I already have a fever. 
#spoonie #spoonieprobs #spoonielife #chronicallyill #chronicillness #chronicpain #gerd #eds #hEDS #pots #asthma #ehlersdanlossyndrome #posturalorthostatictachycardiasyndrome #sickandtiredofbeingsickandtired #medicine #sick #sickkid #feedingtube #tubefeeding #tube #gastroparesis
I was able to do this today! 😮 I was at the brink of collapse 😩 but I held it together just long enough and things began to calm down 🙃 and I recovered nicely 🙂. Yay me 😊, you made it through today. 👍👍 Wishing the best to all my Fibro friends out there. Have a good night! 💜💜💜 #fibrowarrior #fibroeverysingleday #fibromyalgiawarrior #fibro #chronicillness #chronicfatigue #chronicpain
One of the beautiful areas we visited on our road trip. We had a wonderful time at Mt. Rainier, this is one of the many waterfalls we were able to visit. We get home on Tuesday ready to rebuild our lives after the house fire. #mountains #waterfall #hiking #disabledhikers #traveltheworld #travel #nationalforest #washington #roadtrip #disabledlife #disabled #ehlerdanlos #chronicpain #neverstopexploring #stillstanding
🌊✨I’ve always found the ocean and the sea calming. It’s my favourite place to just sit, breathe & think.

When I’m in hospital or trying to pee or having a migraine or anytime I don’t want to be where I am, I always visualise I’m on the beach watching the waves or swimming under them.

Where is your happy place? 💭💙
🌊✨I’ve always found the ocean and the sea calming. It’s my favourite place to just sit, breathe & think. When I’m in hospital or trying to pee or having a migraine or anytime I don’t want to be where I am, I always visualise I’m on the beach watching the waves or swimming under them. Where is your happy place? 💭💙