#spoonie

MOST RECENT

Got this lovely ensemble from @byouonwheels. Thanks

#Lupie out and about Orlando enjoying the great sounds of #GenteDeZona
#Spoonie for life and I'm ok with it.

β€œFinish every day and be done with it. You have done what you could; some blunders and absurdities no doubt crept in; forget them as soon as you can. Tomorrow is a new day; you shall begin it serenely and with too high a spirit to be encumbered with your old nonsense.”
~ Ralph Waldo Emerson
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Leave today’s troubles behind. Start to tomorrow with a positive attitude. You never know what amazing things will come to you. If troubles come you’ll be Grady to face them.
Stay Spoonie Strong!πŸ₯„
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#quotes #inspirationalquotes #inspiration #poet #author #ralphwaldoemerson #fibromyalgia #fibromyalgiaawareness #fibromyalgiawarrior #autism #autismawareness #autismmom #chronicpain #pain #chronicpainwarrior #chronicillness #invisibleillness #spooky #spookyspoonie #spoonie #spooniegoth #goth #spooniestrong

"Do something that your future will thank you for."
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Like taking care of yourself 😊

b l i s s πŸ¦‹

@Regran_ed from @fibroforum - The onset of my symptoms was 40 years ago, at age 14, and although my parents and pediatrician worked tirelessly with both DC Children’s Hospital and Johns Hopkins University Hospital to reach a conclusive diagnosis, it eluded them. I was finally diagnosed, as I have reported here, at age 26, by a Rheumatologist in Alaska. He told me to 1. Get better and sufficient Sleep (I had 2 small children). 2. Eliminate Stress from my Life. (to get counseling if necessary) 3. Get and Stay Aerobically Fit. (they were finding that gaining muscle and muscle retention was difficult for patients with Fibro but that those who were not overweight and had good muscle mass tended to suffer less than their heavier, flabbier counterparts). Armed with this information, I returned to the referring physician, who immediately scoffed in my face. He told me to accept my fate, that joint replacement tech had come a very long way and it needn’t be the damning future it once had been. (We were talking hips, knees, shoulders, And hands mind you.) then he gave me a SlimFast coupon for the β€œfitness” part of treatment, told me to talk to my mother and husband about my β€œstress”, and offered to write a prescription for sleeping pills. I was Furious. I didn’t touch the coupon and left the office. This was MANY years before Google and I didn’t mention Fibro to another doctor until we lived in Little Rock AR and my life, and my pain, had Radically changed. I have been the Queen of Fibro denial, hiding from friends, family, doctors... moving so much in the early years enabled that beautifully. In 15 years I told 2 doctors in 2 locations, we were in each location for 2 years so that’s a total of 4 years of treatment over 15 years. Denial Doesn’t Work. For the last 17 years I’ve worked with the same doctor. Still a lot of hiding and pretending this isn’t real, but at least I’ve been Very regular about getting treatment. With the recent loss of some mobility I can’t pretend anymore. So here I am. Where are You? #fibromyalgiacommunity #fibromyalgiaawareness #spoonie #spooniesupport #fibromyalgiaproblems #fibromyalgiasupport #chronicpain #chronicdenial #denial #depression #m

Mini health up date! These last few days have been...rough. The new meds they gave me did help in the slightest. I was more swollen then I had been when we first started meds 2 years ago. My hands, feet, knees and ankles were very swollen and painful. I was having teribble migraines and was just doing really poorly. I decided to switch back to my old meds but it was getting so bad. I will have to let the doctor know tomorrow. It was just so bad I couldn't wait for him to approve. They doubled my nausea meds which isn't doing much of a difference but I am going to keep taking the new dose. And we are schedualed to see the surgeon who will do my biopsies for a conciliation on the 27th. We will schedual the actual biopsies that day. And last but certainly not least! I HAVE A NEW SYMPTOM! Smoke, fragrances, odors and dust all cause HORRIBLE pain in my throat and chest. It feels like I'm choking but I can breathe fine and swollow normally. I don't have asthma and its not anaphylaxis. We are guessing that the Small fibers in my throat have now been damaged and SF pain is trigger by any sensation (touch, smell, temperature ECT.)
So yeah...I'm pretty shitty and am try to keep fighting my battles as hard as possible even on the horrible days πŸ’“
Photo at usf syndrome for women's basketball game today
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#chronicillnesssupport #chronicillnessbadday #chronicpain #chronicillnesslife #chronicillnessproblems #chronicillnessgoodday #chronicillnesses #chronicallyill #chronicillness #chronicpainwarrior #chronicillnesswarrior #spoons #spoonies #spoonie #spooniewarrior #spoonielife #spoonieproblems #spooniesupport #smallfiberneuropathy #finalfour

Add cough drops, diet Pepsi, a heater near my feet and a warm cozy blanket and you've got my weekend! I think the Zicam is working though because *knock on wood* my symptoms are about half as bad as everyone else's. I'm hoping to feel better by the second half of this week though, because I have a major procedure Wednesday and we're hosting 22 people for Thanksgiving on Thursday.
#beatms #curems #disablednotunable #thisisms #disabledbuttrying #degenerativediscdisease #fightingms #multiplesclerosis #mswarrior #cpap #sleepapnea #gastroperisis #staystrong #chronicallyill #chronicillness #chronicfatigue #spoonie #invisibledisease #invisibleillness #disabilityawareness #mentalhealthawareness #ourpainlife

β†Ÿ πŸ“Έ: November 6th, 2018 β€£ ✏️: November 9th , 2018 β†Ÿ
β”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆ
I get so homesick for my Twilight lives sometimes that I actually can’t help but crying. It physically pains me. Its an aching in my chest that throbs and squeezes whenever I think about the fact that I can’t be fully present there. I feel so incomplete and strange in this body without having the ability to wholly switch to the others. It’s like an intense pull into the world but the moment I start to enter it, I’m shoved back and rejected and I’m forced to watch everything through a screen. I can’t break through. I can’t penetrate the screen so that I can completely immerse in and experience my own life. Can you imagine that? Not being able to even live your own life because your awareness is stuck somewhere else. Your consciousness is living multiple lives, but you can only completely grasp one of them. It’s heartbreaking. Hopefully one day I’ll learn how to transcend. β”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆ
#eclectic #enby #werewolf #transgender #pagan #spiritual #spoonie #invisablydisabled #dog #ftm #hippie #hufflepuff #lgbtq #bibliophile #vampire #nonbinary #earthspirit #alterhuman #biromantic #grayasexual #witch

β†Ÿ πŸ“Έ: November 6th, 2018 β€£ ✏️: November 18th, 2018 β†Ÿ
β”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆ
I’ve decided to start incorporating animals, their spirits and their symbolism (general and personal perception) into my path and craft. I truly believe this will help me better myself through the lessons animals can teach me, as well as my connection with Mother Earth and all my siblings through Her.
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#eclectic #enby #werewolf #transgender #pagan #spiritual #spoonie #invisablydisabled #dog #ftm #hippie #hufflepuff #lgbtq #bibliophile #vampire #nonbinary #earthspirit #alterhuman #biromantic #grayasexual #witch

β†Ÿ πŸ“Έ: November 6th, 2018 β€£ ✏️: November 18th, 2018 β†Ÿ
β”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆ
β€œWe often forget that we are nature. So when we say we’ve lost our connection to nature, we’ve lost our connection with ourselves.” - Andy Goldsworthy πŸ‚
β”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆβ”ˆ
#eclectic #enby #werewolf #transgender #pagan #spiritual #spoonie #invisablydisabled #dog #ftm #hippie #hufflepuff #lgbtq #bibliophile #vampire #nonbinary #earthspirit #alterhuman #biromantic #grayasexual #witch

Put on makeup to leave the house. Regretted it.
But hey, I got out! And it was made clear why I do most of my Christmas shopping online πŸŽ„β€οΈ.
Back in bed now where I am safe and warm.
Love you all.
Keep fighting. You're inspiring me daily. πŸ’ͺ❀️
😘
#spoonie #spoonielife #chronicpain #chronicillness #pain #arthritis #fibromyalgia #anxiety #depression #fightlikeawarrior #chronicloveclub #sunday #selfie #winter #makeup #sickfightsback
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Last night the pain was horrible. I was tired early, so I went to sleep at 10.30pm, but was woken up an hour and a half later by 8/10 pain in my right thigh. I think my hip was the problem, because there was some pain there, and some radiating to my knee and calf.
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I tried to ignore it, but it was hard to even breath through it. By the pain scale I use, an 8/10 is "pain that would only be distracted by another severe pain like having your leg bone snapped". I literally even thought maybe I could do this by beating my broken foot until the bone snapped again just to distract, but I did realise that'd be unhelpful. I got up, got a heatpack, ignored the fact that I possibly have a stomach ulcer and took some prescription anti-inflammatories.
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Unfortunately the heat made it worse, so I threw that on my sore shoulder. Tried to ignore the pain again, but it crept up to a 9/10 - defined on my scale by "the worst pain you've ever experienced without passing out; not even someone snapping your bones would distract". I felt so sick, my breathing was shallow and I had to make a pact with myself that if I tried ice and the last endone I had, and got no relief, I really had to go to hospital.
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Thankfully it did work. It brought it down to a 7/10 within 20 minutes, and then within 2 hours it was brought down enough that I could sleep. I'm still hurting quite a lot in that hip and thigh this morning, but it's a reminder for me to call the orthopedic surgeon to get booked in for the double total hip replacement. This is not a pain I want to experience again.

#chronicillness #chronicpain #pain #hipdysplasia #rheumatoidarthritis #fibromyalgia #connectivetissuedisorder #autoimmunedisorder #autoimmunedisease #autoimmune #crutches #zebrastrong #spoonie

So much truth to this. I am drained. Physically, mentally, and emotionally. I have had a migraine literally every day this month so far. Nothing I do stops it from coming back. I am so nauseated I can hardly eat and when I can it seems like I am too exhausted to actually cook. I know that things will turn around again but the year and a half since the Botox quit working have been hell on earth. I am hopeful though. I have an appointment with another new neurologist in three weeks. This one is a migraine/headache specialist that is in the practice that did my mom's surgery. I have to go to Omaha but at this point I would go to Timbuktu if it would help. And there are now three migraine specific preventatives on the market so hopefully she will be open to putting me on one (Iowa City didn't want me to be their guinea pig since they are without a migraine/headache specialist). Fingers crossed that this flare ends soon and that the new neurologist can help me get my migraines back under control so I can have my life back. Until then I guess I will just keep taking things one day at a time. #frustrated #strength #neurologist #drained #keepmovingforward #faith #workinprogress #hope #onedayatatime #onemomentatatime #geekygirl #geeklife #cosplaygirl #mentalhealthawareness #alwayskeepfighting #anxiety #bpd #idontmind #recovery #chronicmigraines #chronicillness #chronicpain #iamnotmyillness #spoonie #fibromyalgia #suicideawareness #suicideprevention

The Stages of Grief After Learning You Can't Be 'Fixed'
When looking for answers to a health issue, without really thinking about it, you might have this idea that once you know what it is, you can cure it, or at least treat it and make it significantly better.

So, when the time comes after months or years of tests and unanswered questions when you finally get an answer, you don’t expect to hear that there’s not much you can do about it. You don’t expect to find out that there is no cure. You know that can happen, that it’s possible, but some place deep in your mind, you don’t want to acknowledge it. This information – that they know what it is but still can’t help you – is like a 20-foot brick wall toppling down on you, and, written on each brick is a new, complex emotion. Each one crashing down on you until you are buried in the rubble of your inner avalanche.

The main feelings, from the moment you have answers to the moment you realize it doesn’t make much difference, goes like this:

Elation. You don’t have to wonder if you are β€œcrazy” anymore. You don’t have to prove yourself to doctors or family or yourself. You can finally research and understand the specifics of what your body is doing and why. You can get a glimpse into the future progression of your illness. Hooray! Answers!

Then:

Grief: You’ve gained a diagnosis and have lost the possibility of getting better. In that moment, you’ve lost the dream you’ve played in your mind a thousand times before. The one that kept you hanging in there, that gave you the strength to keep trying. That hope for a healthy future full of infinite possibilities. Being able to function normally again. It can be devastating to lose that dream. You feel like you’ve lost a part of who you are, who you were meant to be. You’ve lost hope. Hope for a cure. All of a sudden, that future dream is shattered. Gone. That part of you, the future you, who you’ve envisioned a thousand times in your mind, crumbles like the imaginary world it was.

To continue reading go to: https://themighty.com/2017/05/stages-of-grief-chronic-illness-diagnosis/?utm_source=ChronicIllness_Page&utm_medium=Facebook

#invisibleillness #spoonie

I took a brief snowy walk, and added to my lamppost photo collection. As far as winter is concerned if it was always like it was tonight I could deal with it, it was perfect. Cold but just cold enough that you need your jacket and hat and are otherwise fine. Snow but just that delightful powdery stuff. Almost 0 people out and about making it feel like your own personal wonderland.

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