#spooniepain

Some lovely flowers and trees outside at the radiology place this morning. He thinks the spasms behind my knee are coming from my back. He’s going to review my scans and see if there’s a treatment option. Possibly it’s something that can’t be fixed, or it may help to inject the nerve. I’m just glad I have an answer, never thought of my back being the culprit! #radiology #flowers #pretty #trees #knee #back #nerve #injections #spoonie #spooniepain #spoonielife #exhausted #doneforthday #nomorespoons

1💬

I’m feeling so awful this evening, I’ve been in terrible pain all day, with some nasty spasms in my back making me miserable. I desperately want to make it to my appointment tomorrow though, this is a picture of my knee all swollen, the circle is over my knee cap. As my son says I have two knees. And this isn’t the knee I was referred about! We don’t know what the issue is with this one as the ultrasound found nothing. Yeah, it’s a pretty big nothing! Anyway please send some extra spoons so I get there! #knees #swelling #appointment #pain #outofspoons #backspasms #ow #spooniepain #cantdeal #needachauffeur #noenergy #spoonie #spoonielife #kneepain #theyfoundnothing #ultrasound

2💬

I didn’t realise that it was World Arthritis Day on Thursday. I’m 44, but I have to use a cane and wheelchair due to arthritis. I’ve stopped gardening and am barely able to cook. It’s difficult to get my kids to their appointments and pick up their medication. I get a lot of things delivered, as going out results in days in bed. By the weekend all I can do is lie in bed and try to recover from the week. It’s Saturday morning and I’m in bed with a heat pack trying to get the pain to settle to a point where I can drive to the chemist to pick up some medication. We need to find a cure! #arthritis #osteoarthritis #findacure #disability #suffering #pain #debilitating #nowaytolive #spoonie #spooniepain #spoonielife

1💬

@emmy97xox and I just watched Fantastic Beasts and Where to Find Them. What a brilliant movie, we both loved it. The Niffler reminded us so much of our ratties, just the way he moved was so rattie like. I hope there’ll be a sequel! #fantasticbeastsandwheretofindthem #brilliant #movie #lovedit #nifflersrule #niffler #rattie #ihopetheresanothermovie #neededabreak #restandrecharge #spoonie #spooniepain #spoonietired #spoonielife

2💬

Right?? 😪 Spoonie pain makes me a crybaby. I've had other pain, grief, loss of so called friends, emotional pain, injury pain, surgery pain, birthing pain, etc., but nothing as chronic & debilitating as Spoonie pain. It's there every day of every second of the whole freakin' year. It doesn't go away. It can get "tuned" down to about a 5-6 on the pain scale for me with meds but it's constant. This is coming from a burn survivor, don't get me wrong burn pain is a whole different trauma & I've lived it & will always live with it but for me, chronic pain is just something that I can't escape. After all I went thru as a burn survivor, I got thru it. I can't get thru the debilitating, constant, deep pain I endure with being a Spoonie. It's just nothing I can explain. I went to therapy for my emotional trauma of being a burn survivor. I can't go to therapy for chronic pain. I had numerous surgeries for my burns from skin grafts to scar tissue release surgery & everything in between but I can't go thru any of that to help me with my chronic pain. I can't escape it. I don't take my burns & my life as a burn survivor lightly. It was sheer freakin' hell so when I say chronic pain is so debilitating for me, I mean it. My drs suspect that's where my Spoonieness originated from 😢 There is no other pain like getting burned, there's no other pain like giving birth. There's no other pain like #spooniepain It's real. It sucks. It's maddening. It's constant. It makes me cry more often than anything ever has. My #ra pain. My #interstitialcystitis pain My #trigeminalneuralgia pain. My #migraine pain. My #tmj pain My #ddd pain. The list is endless. My pain for some crazy reason doesn't show on me. My #Spoonieness is invisible but believe me, it's there 24/7 & it totally bites. So yes, pain makes me cry 😪 #this #sotrue #pain #painsomnia #truth #chronicpain #mytruth #myspoonielife #myspooniejourney #purpleness #chronicfatigue #chronicillness #invisibleillness 💜🌼

6💬

Spoonie pain can do that, over & over again. Who can have a clear mind when the pain rips at you 24/7? Yeah, that. #sotrue #truth #spooniepain #ourtruth #spoonietruth #this #spoonie #chronicpain #spoonieknows #chronicfatigue #chronicillness #purpleness #invisibleillness #myspoonielife #myspooniejourney 💜

6💬

Went to the doctor today for my knee and I need to see a specialist pain radiographer. Hopefully he can help, if not then I’ll need an operation. I’m not very good under anaesthetic, so I really want to avoid that #pain #knee #specialist #radiology #operation #anxious #anaesthetic #spoonie #spooniepain #spoonielife

9💬

My bad knee is giving me a lot of grief lately. At least the pajama pant meerkats are ready to party!! #badknee #ow #pain #cramps #cracksinthebone #tissuedamage #cyst #constantclicking #knee #problems #meerkats #party #pyjamas #smile #spoonie #spoonielife #spooniepain

6💬

UPDATE💜🍃: Today my mother and I adventured out to the Valley Children’s Hospital CARE Event ! I was the lead speaker talking about my long road of my diagnoses story and after took questions from the teens and parents wanting some advice ! I love that I can be apart of something so powerful allowing these families feel like there is hope, there is light at the end of the tunnel , that they aren’t alone in this fight ! Was so humbling to see so many children and teens & parents come up to me thanking me , saying I touch their life and gave them hope things can and will get better ! After I spoke then we had lunch and we stuck around for the cowboy show 👨🏻‍🌾👢 was lots of fun, great people and most of all AWARENESS! #Lupus #LupusBlog #LupusLife #LupusAwareness #LupusWarrior #LupusPain #LupusProblems #LupusChick #SystemicLupus #SystemicLupusErythematosus #SLE #Spoonie #SpoonieLife #SpoonieChick #SpooniePain #Spoonie #ChronicIllness #ChronicPain #ChronicIllnessLife #Fibromyalgia #AutoimmuneDisease #InvisibleIllness #CareEvent #RheumatoidArthritis #KidsGetArthritisToo #JRA #Arthritis #CareEvent2017 #LupusAdvocate #LupusAdvocacy

1💬

Last day here in Fresno California , my mom and I adventured to see the underground gardens and now heading home 🍃❤️. Thank you Fresno for the lovely time we are so blessed ! #Lupus #LupusBlog #LupusLife #LupusAwareness #LupusWarrior #LupusPain #LupusProblems #LupusChick #SystemicLupus #SystemicLupusErythematosus #SLE #Spoonie #SpoonieLife #SpoonieChick #SpooniePain #Spoonie #ChronicIllness #ChronicPain #ChronicIllnessLife #Fibromyalgia #AutoimmuneDisease #InvisibleIllness

0💬

Not feeling so good today. All over joint pain, migraine and every time I sit up I nearly vomit. Lying here with the bucket next to me and Beeno at my feet. He knows when I'm not feeling well. Ugh #cat #Tabby #unwell #feelsick #pain #migraine #jointpain #nausea #spoonie #spoonielife #spooniepain #pet #catsarefamily

6💬

A BIG highlight to my trip was that a family that just starting to go through the struggles of trying to go through life with a chronic illness reached out to me and it just so happened that they live in the Fresno area ! While here I made arrangements to meet the family and young women like me living with a chronic illness . My mother and her family say for dinner and I got to talk , laugh , answer questions , and just hopefully give her some love and comfort she isn’t alone ! I feel like this trip has become more than what I thought I was coming here to do . Going to speak this morning then actually meeting someone my age going through this and knowing there is hope ! And others like her ! I feel so blessed I get to be apart of something bigger than me! Bringing hope and smiles to people who are going through a hard time through my troubles to see there is a light at the end ! I feel like I made a new friend for life 💜😊!! I’m so happy 💓 #Lupus #LupusBlog #LupusLife #LupusAwareness #LupusWarrior #LupusPain #LupusProblems #LupusChick #SystemicLupus #SystemicLupusErythematosus #SLE #Spoonie #SpoonieLife #SpoonieChick #SpooniePain #Spoonie #ChronicIllness #ChronicPain #ChronicIllnessLife #Fibromyalgia #AutoimmuneDisease #InvisibleIllness

0💬

Today I had the honor to speak at the CARE event in Fresno California . I told my diagnosis story from start to where I am now in my life as a 23 year old , a preschool teacher , and a college student . I answered questions from parents and had families and parents thank me for my story & telling me they resonated with a lot the things I went through . Which made me feel good , a mom told me I have her hope to hold on and things will get better ! This entire weekend was great ! I’m so filled with love in my heart to know I was apart of something so great & positive ! 💜 this is about something so much bigger ; bringing awareness ! #Lupus #LupusBlog #LupusLife #LupusAwareness #LupusWarrior #LupusPain #LupusProblems #LupusChick #SystemicLupus #SystemicLupusErythematosus #SLE #Spoonie #SpoonieLife #SpoonieChick #SpooniePain #Spoonie #ChronicIllness #ChronicPain #ChronicIllnessLife #Fibromyalgia #AutoimmuneDisease #InvisibleIllness #CareEvent #RheumatoidArthritis #KidsGetArthritisToo #JRA #Arthritis #CareEvent2017 #LupusAdvocate #LupusAdvocacy

3💬

Got my print from @makedaisychains and I love it so much!!! I haven't decided where to display it yet, I thought I would put it in my room, but my daughter loves it too and wants me to put it somewhere we can all see it. Having a rest and recharge day, as my facet joint went on me yesterday and is still hurting. When it "goes" on me I can't stand or walk, so I very much want it to settle! #boringselfcare #print #wonderful #loveitsomuch #wentoutside #colours #daisies #boots #picture #art #facetjoint #rest #recharge #pain #cantwalk #spoonie #spooniepain #spoonielife

5💬

If only. My infected tooth cracked right down the middle tonight while I was eating dinner. FML. So I'll call the clinic again in the morning and see if they can help. Because of my bleeding disorder, ordinary dentists won't touch me, so this is my night, I'll spend the next 10 hours or so with half my face throbbing. Oh what a night #tooth #cracked #inhalf #dentalpain #toothpain #ihopeidontchokeonit #spooniepain #fml #throbbing #agony #ugh #spoonie #spoonielife

6💬

@princetabbypossum Just thinkin' 'bout life. It's Saturday morning here and I'm so exhausted after such a big week full of pain. I did manage to have a shower though, so go me! #exhausted #saturdaymorning #life #thinking #cat #tabby #beeno #feets #paws #spooniepain #spoonie #spoonielife #resting #shower #recharge

3💬

Spoonie Guilt . It's something so strong that many of the love ones around us don't understand why we would feel guilty about things we truly have no control over . I can't explain it myself , the guilt is real though and it can tear down the strongest of person down. It cuts deep into a part of you that you have no control over and can do nothing about. This kind of guilt is on a whole other level of guilt from other things you may feel guilty about in life. Having to cancel on friends because you aren't feeling well , having to watch your family or loved one and close friends around you suffer because you are suffering . Having to put others through stuff that have to do with your illness , having to miss out of things or do them differently or not as you'd like to do it because of your illness . Feeling like you are a burden to those around you , or like you take up all the attention and energy . I have felt this guilt before , and it's left me in a really dark place in my life when I felt it was my fault . Let me tell you ITS NOT . I'm not going to lie and say I don't have moments where I still feel guilty I do but I don't let that feeling eat me up and stop me from living my life . It of course is easier said than done but know you aren't alone . We have the pressure on us to have your life in control and be able to be independent and not ask for help . So when we feel like we are low and feel crappy this guilt makes us feel less of who we are because we cannot keep up . You are doing the best you can with what life handed you don't let anyone else make you feel like that already isn't amazing . You are STRONG 💜✋🏻 #LupusBlog #Lupus #LupusLife #LupusStrong #SystemicLupus #SystemicLupusErythematosus #SLE #LupusProblems #LupusSisters #LupusAwareness #LupusWarrior #LupusPain #Spoonie #Spoonies #SpoonieProblems #SpoonieLife #SpoonieSisters #SpooniePain #SpoonieGuilt #ChronicIllness #ChronicPain #ChronicDisease #InvisibleIllness #InvisibleDisease #AutoimmuneDisease

1💬

If you turn your volume up you'll get a small idea of what we woke up to at 7.30am. Mind you, Em and I were already awake, and I am thankful that someone is vacuuming out my gutters, but it's so loud and why today? #ugh #feellikeshit #sotired #soloud #destroyingmykarma #achingallover #haveaheadache #spoonie #spoonieproblems #spooniepain

0💬

Different day, different hospital. It's a lovely hospital, but the chairs in the emergency waiting area killed my spine. Thankfully I'm lying down now. I'm expecting a long wait, but I don't mind so long as I'm in a bed. #hospital #emergency #bed #worstchairsever #pain #unwell #waiting #lyingdown #myspineisreleived #chronicpain #osteoarthritissucks #spoonie #spooniepain #spoonieproblems

11💬

Our colourful crowded kitchen bench! Our kitchen is teeny tiny, but it cheers me up to see all the pretty things when I'm in pain. Photo by @emmy97xox #kitchen #red #blue #white #turquoise #toaster #kettle #coffeepodmachine #cannisters #musicalnotes #ratsinteacups #bowl #colourful #cheerful #happyplace #spoonie #spoonielife #spooniepain

0💬

Because I got here so early I got straight through and I've been given pain meds and different antibiotics. Just waiting to make sure I react to it ok #hospital #emergencyroom #pain #infection #spoonie #spoonielife #spooniepain

8💬

Well here I am, it's nearly 6am and I'm in agony, so a friend is going to drive me to the hospital. Wish me luck! #ow #agony #cantstanditanymore #infection #hospital #needhelp #spoonie #spoonielife #spooniepain #cat #tabby #cats_of_instagram

2💬

Whenever we leave the house Beeno always watches us go. It breaks your heart a little bit each time. He also likes keeping an eye on the neighbours and delivery drivers. Guard cat on duty!! In other news I've woken up in such agony. My gum is ridiculously painful. I'm staying in bed today to try and heal. Or I'll end up in emergency. One or the other 😪 #cat #Beeno #Tabby #ourboy #watching #guardcat #missesnothing #heartbreaker #cats_of_instagram #window #lookingout #extremepain #infection #stayinginbed #unwell #waitingforantibioticstokickin #chronicpain #painonpain #wishitwouldstop #spoonie #spoonielife #spooniepain

0💬

So I had about half an hour of energy this morning before the pain hit. Improvement! I managed to make some toast and wipe down the kitchen bench. Miserable again now, but there are a few things that need doing today. Slow and steady #pain #headbuzzing #aching #allover #headache #meow #nervepain #energy #improvement #thingstodo #cat #catmeme #tabby @princetabbypossum #spoonie #spoonielife #spooniepain #chronicpain #flare #osteoarthritissucks #bursitis #mentalillness #vonwillebrands

2💬

In so much pain today and still horribly exhausted. Tabs has been with me on the bed all morning and I just texted instructions to my son on how to put dinner in the slow cooker, couldn't even stand the thought of sitting up and supervising. Thanks @doggie015 and @princetabbypossum ❤️ #loveyouguys #pain #exhaustion #somuchpain #struggling #chronicpain #flare #sideeffects #infusion #tryingtorideitout #everythingsucks #spoonie #spoonielife #spooniepain

1💬

Oh god I feel like I've been beaten up. So very rough this morning #infusion #feelterrible #sick #achesandpains #sideeffects #feelrough #cat #tabby #vonwillebrands #spoonie #spoonielife #spooniepain

0💬

Last nights sky was amazing! I haven't been out of bed since, extreme pain has knocked me flat today. I'm still hanging onto a shred of hope that maybe I can get into the shower after dinner. Here's hoping! #excruciating #pain #inbed #cantmove #osteoarthritissucks #bursitis #spoonie #spoonielife #spooniepain #appreciatethesky #outthewindow #pink #orange #clouds #rest #recover #try #hope #tomorrowisanotherday

1💬