Got to enjoy smoking #hookah with my siblings today...was in bed tryin to deal with so much #jointpain and muscle pain earlier...was nice to be able to relax a bit.#spoonie#spoonielife#spoonieproblems#chronicpainpatient#hookahlove#hookahlovers#hookahtime#hookahsocial#hookahlifestyle#smoking#zebrastrong#chronicallyill#hookahsession#hookahtobacco#ilovemysiblings#spooniecommunity#spooniegirl#relaxing
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So I found out recently that my #painmanagement dr is getting off the grid-with all the horrible new CDC Guidelines he feels he’s unable to properly treat #chronicpainpatients so he’s no longer treating those on #disability .I’ve been trying to get on disability this year-it took a super long time for me to get my parents to accept that I needed to be on disability because at this point I just can’t work.My pain is just too bad-I’ve looked into so many options but I never got a degree and my brain doesn’t work like it used to,neither does my body...I’ve really wanted to work but I just can’t hold up a job.So now my choices are 1.Keep trying to get on disability and hope against all hopes that there’s a pain management dr who’s willing to prescribe opioids(which if you’re a CPP you know is basically impossible),or 2.I drop the disability thing,find some type of job I can do so I can still have insurance and continue to see the ONLY dr who has understood my health issues and treated them seriously.The first doesn’t feel like an option at all...I have no idea what I’m gonna do for work when I’m as bed bound as I’ve been...but I really need this pain dr-he showed up at the #DPP2018rally in April-he understands the importance of opioids.So yeah...this is going to be tough.I mean,it’s embarsssing how much help I need in life.But this is forcing me to fight even harder which I’m gonna take as a good thing despite everything...this weekend I’ve been encouraged because the last three days in a row I’ve swam in the pool,taken a shower(I usually take baths and a lot of time need help with even that..),and been doing more small things around the house.I know those things seem small but they are HUGE for me.So huge.Ive missed not being able to do normal things on my own...pain has taken so much independence from me already.It feels so good when I’m able to do that stuff.Its not that I’ve been pain free-half the time I’ve been in bed trying to sleep cause I feel so horrible.But it feels good to do things-it makes me think I have a chance at finding some work to do.Im a long ways off but for right now I’m gonna be super proud of myself for doing some small stuff on my own.
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Doctor visits... June 11th - Nutritionist Appointment June 15th - GI Appointment June 16th - Doctors Appointment June 18th - IV Infusion June 19th - Nutritionist Appointment June 20th - GI Appointment June 21st - Allergist Appointment
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My wrist are bad..Not typing much. Not using my wrist a lot.Just want you to know I'm thinking of you all and I hope you had a low pain day. Can't socialize in this much pain. Talk soon. #car#carpaltunnels #carpaltunnelsyndrome #carpaltunnel #canttype #ttylall #outofspoons #spoonlessspoonie #highpain #tiredspoonie #spooniecommunity
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I woke up in the Helicopter. It’s the first time I’ve ever flown. I wish it was under better circumstances. HMS Coastguard flew me to Bronglais Hospital in Aberystwyth. We landed on a playing field of a college and transferred by ambulance to the hospital where there was a team waiting to meet me in Resus. 🚁🚑🏥 #eds #ehlersdanlos #ehlersdanlossyndrome #raredisease #zebra #chronicillness #chronicpain #disabilityblogger . . #spo#spoonielife #spoonies #spoonieforlife #spooniecommunity #spoonietruth #spoonieprobs #spoonielove #spooniegirl #spooniesupport #spooniewarrior #spoonieliving #spooniefamily #spoonieblogger #spooniesunite #spooniefriends #spoonieproblems #spoonie
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