#spooniestrong

Instagram photos and videos

#spooniestrong#spoonie#chronicillness#spoonielife#chronicpain#invisibleillness#fibromyalgia#spoonieproblems#autoimmune#disability#spoonies#spooniewarrior#chronicillnesswarrior#chronicpainwarrior#pain#cfs#butyoudontlooksick#pots#fibrowarrior#disabled#fibrofighter#chroniclife#health#chronicallyill#chronicfatigue

Hashtags #spooniestrong for Instagram

🌎 T R A N Q U I L I T Y 🌍
Bagni Regina Giovanna, an enchanting swimming cove hidden among Roman ruins and a crumbling stone archway.
Today has been one of my favourite days, stumbling upon this little bit of #paradise. I never imagined nature could make me this happy. When I get home, I’m going to use this and spend more time in #nature and parks, being #mindful and in the moment and learning to breathe WITH the pain. #bagnireginagiovanna #sorrento #secretbeach #hiddentreasures #mindfulness #travelblogger #traveladvice


1

See the link below to very quickly and easily make a call to your senators! 👇🏼👇🏼👇🏼👇🏼
https://www.aclu.org/issues/call-senators-stop-dhs-separating-children
#stopseparatingfamilies

#lymedisease #chronicillness #spooniemom #spooniestrong #holdonpainends #humanrights #pots #lymediseaseawareness #lymedontkillmyvibe #bartonella #babesia #endlyme #ibd #mctd #mctdawareness #autoimmunewarrior #autoimmunedisease #autoimmune


0

Vlog #38 is up on the channel! It included a dollar tree haul, and my new single serve drink system that is totally inspired by @coupontoprovide, and her amazing fridge! Click the link in the bio 👆🏻 and check it out! #smallyoutuber #smallyoutubearmy #smallyoutubechannel #smallyoutubesupport #smallyoutubercommunity #dollartree #dollartreefinds #dollartreehaul #dollartreecommunity #dollartreefind #dollartreeaddict #dollartreeobsessed #spoonie #spoonielife #spooniestrong #spoonievlogger #spooniecommunity


1

Quality of life is commonly discussed when talking about the health of pets; yet it is the most overlooked aspect in human healthcare.
👩‍⚕️
Modern doctors aren’t trained to prevent disease or help you get the most out of life with a chronic illness. They are trained to prolong life at all costs.
👩‍⚕️
That’s why I’m here. I help patients live their best life with their specific needs met. I teach you to prevent further illness & get the most out of your life today.
💁‍♀️
Together we will break down whatever you are struggling with - communicating with your doctor effectively, keeping your home clean, getting movement into your life, dealing with the loss of relationships, whatever may be holding you back from feeling like you can live this way. Family & friends mean well, but it is hard for them to relate to the daily struggles of chronic illness.
🙋‍♀️
I have been there for 23 years. I’ve seen the worst of times (I actually died). I’ve seen the best of times. And I’ve seen everything in between. There is no 1 magic formula. Everyone’s struggles are different. That is why it’s helpful to have someone get to know you personally & help with your specific needs.
*
So tell me, how can I help you live better today?
.
.
.
#helping #spoonies #livelife while #coping with a #spoonielife #onthedaily #overcomingobstacles of #invisibleillness to have #qualityoflife not just #quanityoflife #helpingothers live #spooniestrong #30daysofsc


0

No matter what life throws at you, never stop dreaming. With intentional action those dreams become reality!
.
.
.
.
.
#keepdreaming #dothework #makeyourdreamsreality #spoonielife #spooniestrong


1

I figured what’s one more page and adventure!! 🤓
.
Come visit me over at my oils page!! See you there! 😘
.
#spoonie #spoonielife #spoontheory #spooniefamily #spooniestrong #rheumatoidarthritis #autoimmunedisease #autoinflammatory #youngliving #younglivingoils #younglivingdistributor


1

The first run back is always a hard one. Questions like "Why am I doing this again?" pop into your head. Glad I got out since I know it will get easier and more fun once I'm in my routine. Wasn't tired or anything, just got used to the lazy relaxing mornings during my break. About 2 more months and then a lot of lazy mornings ahead. .
.
.
#chronicallybetteryou #chronicillness #triathlon #swimbikerun #spoonie #diabetes #cerebralpalsy #crohns #asthma #cancerawareness #epilepsyawareness #morningrun #invisibleillness #chronicdisease #autoimmune #rheumatoidarthritis #ironmantritraining #lymewarrior #lupus #running #ibdwarrior #fibrowarrior #ironmantri #chronicpain #ironmanintraining #spooniestrong #spoonielife #mentalhealthawareness #depression


1

Sometimes I need to remind myself where I came from. 3 years ago I couldn’t get out of bed, I had severe anxiety and was afraid I would never make it. Now I can say that I have improved, I can get through my days and I honestly believe that I will heal. .
I don’t believe that this is it for me. I’m not supposed to be sick forever, deep down inside I just know it. I need to heal my gut and I need to improve my immune system but most of all I need to believe that it is possible for me to feel good again. After years of being ill you sometimes don’t believe that you will ever feel healthy again. I need to get out of that mindset. .
I am strong and I will heal. For all of you going through something similar: this is not it, there is more in this life for you than being sick! Believe it. #lymedisease #lymewarrior #lymedontkillmyvibe #lymediseaseawareness #morethanlyme #butyoudontlooksick #fucklyme #chronicillness #chronicallyfabulous #chronicfatigue #ibs #healyourgut #guthealth #spoonie #spooniestrong #invisableillness #sibo #bloat #bloatedbelly #positivevibes #portrait #leakygut #digestivehealth #ibs


0

Morning all! Hope your day is going bless! As quirky as I like to think I am...im having a bit of a hard time at the moment...im missing my dad...my pain levels are through the roof...crying my eyes out cos I don't want to feel needy...and just at a point that my mind is fucking with me tempting me with shit I don't want to do...and it's becoming harder to ignore it...demons are a bitch eh! Lol don't know how long 8m gonna be in this funk though...but will be smiling through the tears somehow! 😢🙃🤢💜 #fibromyalgiaawareness #spooniestrong #butyoudontlooksick #chronicpainwarrior #fibro #fibrowarrior #chronicpain #spoonie #spoonielife #depression #copd #anxiety #migraine #chronicillness #fibromyalgia #exhausted #tired #spoonies #chronicillnesswarrior #pain #purpleribbon #fibrosucks #life #mylife #mentalillness #everythinghurts #spoonieproblems #fibrofighter #me


2

Everything tastes better in a coconut bowl! Finally got myself a couple 😍💖 For those of you who haven't seem them, they are made from coconut shells and are all natural! 😍🙌💜 Here fillled with a yummy blueberry smoothie and topped with raspberries, banana, raisins, sunflower seeds and sesame seeds. 💜🙏💜
.
.
.
.
.
#smoothierecipes #vegansmoothies #coconutbowls #chronicallyill #invisibleillnessawareness #fatigued #adrenalfatigue #autoimmunewarrior #fibromyalgiawarrior #fibrofighter #spooniewarrior #spooniesunite #spooniesister #spooniestrong #butyoudontlooksick #cfs #cfsme #chronicillnesses #chronicfatiguesyndrome #hashimotosthyroiditis #hypothyroidismweightloss #underactivethyroid #mecfs #brainfog #fibroflare #myalgicencephalomyelitis #recoveryjourney #spiritualjunkie #spiritualhealth #meawareness


1

Keep putting out good vibes. They will come back to you tenfold.💗Do you agree?💗****************************************************** #bekind #wednesdaywisdom #goodvibes #inspiration #quote #qotd #ootd #summerstyle #realstagram #instagood #hatgirl #smilealways #goodvibrations #goodvibestribe #goodvibesonly #wordstoliveby #truth #healthylifestyle #nofilter #instareal


12

Ready today Reserve your Bars.My newest Pain relief Artisan Natural Soap!! My customers that I come across have a lot of issues with pain and I just wanted to come up with a new idea to try to help people naturally with any issues that they may be having. Enjoy everyone⭐️
http://www.etsy.com/shop/yoyo9112

This is my newest creation my Pain relief natural Artisan soap the combinations of all the essential oils together forms this one powerful bar of soap!💗 Eucalyptus Oil for Joint Pain andArthritis. Eucalyptus oil is both an anti-inflammatory and an analgesic so it helps to soothe both the inflammation and pain that is associated with conditions such as rheumatoidarthritis, osteoarthritis and even muscle injury.
Cloves possess anti-inflammatory and pain-killing properties. Reduced the inflammation caused by edema. It was also confirmed that eugenol has the ability to reduce pain by stimulating pain receptors.

Peppermint Essential Oil healthbenefits includes promoting healthy digestive system, relieving sore muscles, repelling bug, treating jointpains, relieving headaches, treating urinary tract infections, improving circulation, ensuring healthy skin, promoting health teeth, and relieving stress.

The health benefits of lavender essential oil include its ability to eliminate nervous tension, relieve pain, disinfect the scalp and skin, enhance blood circulation, and treat respiratory problems.

Rosemary Benefits

The ability of rosemary essential oil to relieve pain has resulted in its extensive use in treating headaches, muscle pains, rheumatism, and even artheritis.


2

*warning 2nd pic is post surgery update* It's so easy as a chronic illness warrior to let ourselves get down or upset about our diseases. I fight pain from the moment I wake up until I fall asleep, every single day. That's only one of my MANY symptoms. It's far to easy to slip into that victim mindset of "why me" I know for a fact it is. But because of ALL I face on a daily basis from taking pills and then more pills to stabilize my body from reactions of those pills, injecting myself with meds for my migraines, hooking up infusions, and putting on braces to just keep my body together it shows that I am a WARRIOR. I wake up everyday and thank God for another day and I pray for the strength to get through that day. I put on a smile and face whatever the day brings. So much has been taken away from me, but I'm taking my mindset back because that is what I can control 💪🏻 #spooniestrong #chronicillness #chronicillnesswarrior #heds #EDS #pots #potsstrong #posturalorthostatictachycardiasyndrome #fighter #spoonie #nevergiveup #chronicillnesssupport #anklesurgery #anklereconstruction


1

Superar desafios. Lembro-me de colocar isso em meu currículo profissional. Hoje, pratico diariamente 🙆🏻‍♀️ #spoonie 📶 #spooniestrong 💪 #spoonielife 🧘🏻‍♀️ #lisboa 🏰 #tejo ⛵️


2

Everyday I will be posting something I am greatful of on my stories. It is so important to look at the good in each as otherwise it’s very easy especially on bad days to be swallowed by all the negatives but however small you have to celebrate those little victories and blessings. Please join me in this movement and let’s see what impact being positive can make 💖
Thanks to @youngpeople_chronicillnesses for the idea!!
#goodineveryday #grateful #postivequotes #countyourblessings #notjustsurviving


6

[ad for @anodyne.dk ] 👕. På bloggen anmeldelser jeg BH'en fra Anodyne. Psssst 📣 I bunden af indlægget er en rabatkode 😉 #linkinprofile .
.
#nytpåbloggen #danskblogger #nouwblogger #anodyne #test #kinesiotape #holdningstøj #holdningskorrigerendetøj #bh #sport #holdning #fysioterapi


23

It’s a small world after all 🎶

Last night when we were leaving the park i had my lights turned on and my mom hitched a ride on the back and we passed by some people and their little boy yelled “that is so awesome”. We got a late start to the day after the teleconference call with my Headache Specialist. I had a rough time after the call with a panic attack/emotion flood (I’ll go more in depth on that on a later post). Once we got to Disney we had a great time though.
Apparently Vidcon is happening right in Anaheim so the security lines were huge but oddly enough there was not that many people in the parks.
We spent the day casually strolling around and rode a few rides but my body is tired and sore from bracing for turns and sudden movements on rides.
This evening we went to see Frozen and I loved it.
Then we came back to the hotel and have been chilling in the room.
Tomorrow we are going to go ride the cars ride and buy bread (ya know me and my carbs), then we are going to drive home.


2

Got this little guy today. It’s a custom AFO (ankle-foot orthotic), which basically limits the amount my ankle and knee extend. In someone without EDS, the tendons surrounding a joint stops your body from overextending. With EDS, tendons and ligaments become lax and allow the joint to hyperextend. The AFO acts as a second joint, correcting my hyperextension
My right ankle is one of my worst joints, and the first joint I started having issues with. My ankle injuries started 15 years ago! As a child I would complain of ankle pain, only for an orthopedist to say there was nothing wrong. They would say that the pain wasn’t as bad as I said it was. That a simple injury should have healed. That my pain was emotional. I tore my perineal tendon for the first time when I was 15. Again at 17. At 20, I tore the perineal and tibial tendon and broke my tibia. I almost had it surgically repaired but with my recent EDS diagnosis, the surgeon didn’t feel confident doing it. If it happens again, I’ll need surgery. However! The hope is that the AFO will give me the stability my ankle needs to keep my butt out of the OR 🏥
This is also why I only need one! Right now my right ankle is the most severe. Not only is it unstable (which can be dangerous for that side), I also favor my left side almost entirely. Favoring my left side makes me burn way more energy than I should while walking, only adding to my fatigue. If necessary, we may add an attachment for my knee or an AFO for my left foot. But, my doctors are hoping the one AFO will help aid my walking, ease my dislocations and add the necessary stability.
I’ve only been wearing it a couple hours, so I can’t say much, but this may be my favorite tool so far 👍🏻 What’s your most helpful tool?





#spoonie#spooniestrong#invisableillness#butyoudontlikesick#disabled#disabledandcute#chronicillness#chronicillnesswarrior#mcad#mcas#mastcellactivationdisorder#cfs#fibromyalgia#eds#cleds#ehlersdanlossyndrome#pots#poedssturalorthostatictachycardiasyndrome#afo


2

Yay productive day! I worked more on the process of qualifying for this online job thats 5 hours a week that will hopefully work for me. I completed the questionnaire for my upcoming SSI physical which was quite a feat to write so much with my fingers, especially with trying to squeeze all my medical issues in the tiny space they provided. AND I made a draft of a quilt design that my grandma has offered to make me. I did all of this from bed with lots of breaks but at this point that doesn't matter so much to me. When it comes to getting things done from my bed opposed to not at all, the further is the much better option. Over the years I've gained more and more experience and knowledge on how to accommodate myself. I've become I big believer in think smarter not harder.
#productive #mynormal #proud #daybyday #onlinejob #jobsearch #ssi #disability #disabled #disabledandcute #quilt #drawing #accomplished #accomadation #smarternotharder #goodday #stayingpositive #hopeful #sickbuthappy #ehlersdanlossyndrome #ehlersdanlosawareness #invisibleillness #chronicillness #chronicpain #zebrawarrior #zebrastrong #spoonie #spooniestrong


0

Building hammies and crying inside. Eccentric only GHR. This combined with some clean drills, heavy deads and snatch grip RDLs, my legs are feeling this today. Can't wait for yoga tomorrow @revolverstudiosmn to give my body some much needed TLC.


3

The Guardians escorting the ice cream truck into the grounds. Last year the meeting was a surprise for all parties it seemed. Imagine if you will, the sight of a stampede of tie dye and sarongs across a grassy field, catching the unaware local ice cream vendor playing traditional children's tunes. Order restored and a village of happy people of all ages here at #talltreelake  #whereivebeen #campinglife #disabledwomenthrive @tentdiaries #spoonielife #travel #365dayswithdisability @wheelchairlifestyle @disabledtravelwithgeorgina #wheelchaircamping #campingwithdisabilities @paganspiritgathering @spoonies__united #awesomedisability @chroniccommunity @diversability #spooniestrong #spoonielife @thespooniesisterhood


0

Its easy to give up, especially when everyone expects you to. It's okay to want to. What is not easy is wearing #DetroitRedWings logos when you live in #Boston. Do the shit that scares you 😂 #SpoonieStrong #EhlersDanlosSyndrome #OriginalSix


0

Living our emo dreams. 😂
-
🏳️️‍🌈
Want 15 percent off stuff?
@Cypressavenueworks : CAWFRIENDSANDFAMILY
@cricketpupdesigns : 15FROMHERO
@blackonyxgear: Hero15 for 15% off!
#servicedog #assistancedog #disabled #spooniestrong #PawsandLove #Pawsquad


6

🤓 It just makes such a difference when you put yourself together in the morning 🌞 It sets the tone for a productive day that you feel prepared to tackle 💪


8

2015, 2016 & 2017 on my first day of uni alongside today when I finally received my offer of a joint honours in Marketing and Entrepreneurship 💖 I’m so grateful for the evolution in my hair and makeup (what was I playing at in 2015, I look ridiculous with black hair 😂) because I’m cringing at how I used to leave the house looking so crazy like in the first picture 🙈 if you’d have told me this time 4 years ago when I was about to apply to uni that I’d start my course less than a month after loosing my brother, have 2 big surgeries making me work from home for 2 semester and to have somehow managed to pass everything with decent results I’d never have believed you. It has been such a difficult road but I’m so happy to have made something positive from all of this, even if I have had many a breakdown along the way 🙈 I know it’s only going to be more difficult next year as I don’t know what the next few months will hold with my declining health and I’ll have a whole dissertation to write but I know somehow it’ll all come together in the end. I just need to make sure that I can actually make it into uni by myself and not let my anxiety control my life 😬 I won’t lie... it would be great if I could have a year that was stable for once but then again that wouldn’t be interesting at all, would it 😂 definitely looking forward to relaxing for the day tomorrow (and maybe going to Primark because I have an addiction 😂) before all my tests on Thursday which I’m not looking forward to at all but that’s a problem for future Jen 😂 #blogger #proud #fashion #health #life #ibd #crohns #ostomy #tb #invisibleillness #chronicillness #glasgow #student #ootd #excited #spoonie #lifestyleblog #instagood #photooftheday #lifestyle #ibdawareness #barbiebutt #effyourbeautystandards #spooniestrong #autoimmune #fightlikeagirl #confidence #beyourself #nocolonstillrolling #university


8

As promised below is my yummy coconut yogurt recipe. Plus the final parfaits styled by @kyla_lionello! 💖

Some people make the yogurt with coconut milk, but I find coconut cream to be much smoother and better tasting.

You can add just about anything to the yogurt, fruit, berries, granola, chia, unsweetened chocolate, etc.

For coloring I used @e3live blue algae and pink pitaya/dragon fruit powders, both of which are natural and add extra nutrition!

RECIPE (Makes 6+ Half Cup Servings):

🔹️ 2 Cans Organic Coconut Cream (800 ml or 3 1/3 Cups)

🔹️ 3/4 Package of Body Ecology Kefir Starter by @DonnamGates (Or kefir starter of choice usually found in dairy section)

🔹️ Optional - 2.5 Scoops of Body Ecology Ecobloom or other Prebiotic (scoop in container)

METHOD:
1. Mix ingredients

2. Pour mixture into a glass container/jar with an airtight lid and put in a dark cabinet. Leave a bit of room at the top for expansion. It is ideal if you have a cabinet that won’t be opened often for the next 36 hours and a warmer is better than a colder room.

3. After 36 hours place in the refrigerator. Mixture will last for 5-7+ days.

4. Top or layer with your favorite ingredients! These had chia seeds soaked in coconut milk and vanilla on the bottom and blueberries and sliced strawberries on top. 🍓 Enjoy!

#LymeDisease Recovery Year 5 💚 #CancerSurvivor Year 5 💙
🦋


5

Still sick...still awake!...feel like that bit of biscuit that falls off on a dunk and sinks to the bottom of the mug and festers there....got surveyors coming to do my dad's house in 6 hours...maybe they can survey me and class me condemned! Lol but damn my no sleep game is strong! Gonna be a doozy of a day ahead! 🤢😩😪💜 #fibromyalgiaawareness #spooniestrong #butyoudontlooksick #chronicpainwarrior #fibro #fibrowarrior #chronicpain #spoonie #spoonielife #depression #copd #anxiety #migraine #chronicillness #fibromyalgia #exhausted #tired #spoonies #chronicillnesswarrior #pain #purpleribbon #fibrosucks #life #mylife #mentalillness #everythinghurts #spoonieproblems #fibrofighter #me


2

Instead of sitting on my ass in the truck while my son was at his appointment, I went for a walk around town. Got in 2.35 miles before he was done. Better than doing absolutely nothing. Providing the weather is decent I think I will make this routine.


2

Thinking about these gorgeous flowers, from a couple of months ago, given to me in a rough time! There’s a new update on my journey, link in bio go check it out 👆🏻#spoonie #spooniestrong #spoonieyoutuber #spooniewarrior #spooniesisterhood #smallyoutuber #smallyoutubearmy #smallyoutubechannel #smallyoutubercommunity #smallyoutubesupport #vlogger #spoonievlogger #vloggerlifestyle #spoonielife #spooniefamily #spoontheory


0

Vegan Swedish Meatballs? YES, PLEASE! Holy 🐄, these are amazing! It is one of my new favorite meals. 😋
I found the recipe on Pinterest and can be found at: healthiersteps.com and the author is Michelle Blackwood.
#vegancooking #veganmeal #veganeats #veganfood #plantbasedeats #plantbased #plantbaseddiet #plantbasedrecipe #wfpbdiet #wfpbrecipe #wfpb #chronicillness #autonomicneuropathy #autoimmunedisease #sjogrens #pots #mcas #spooniestrong #chronicillnesswarrior


8

I finished my degree! I got a 2:2 and I am so fucking proud of myself, I will make a real post about this tomorrow but until then I just want to say sorry for the irregular uploads, the pain after traveling to university was horrendous. I'm still suffering and barely able to get about the house. I'm on so much morphine it's hard to focus but I am so so happy. So much good news this week and I can't wait to share it with you guys. Also to everyone who has supported me on the journey over my degree, thank you. Every kind comment or message went a long way to encouraging me and keeping me going. You all help me so much more than I can ever say. So thank you all who have been here, it means alot to have support in this Spoonie community.

#Endo #endometriosis #endosisters #endostruggles #endostrong #endostrength #spoons #spooniesister #spoonie #spooniewarrior #spooniestrong #chronicpain #chronicillness #chronicwarriow #mentalhealth #mentalillness #selfcare #restday


5

Day 30/80 - Round 2
.
Oh HEY, Leg Day!
.
I forgot how hard the slider moves are in Round 2 😣
.
The next two weeks are crazy and hectic. I came back from vacation knowing this but it still hit me HARD yesterday. I ate lots of carbs and didn't work out. It happens.
.
Today, though, I went for a walk on lunch, powered through this workout and am headed out for another walk.
.
I still can't run on this bad knee, but I'm doing what I can. It's been a good lesson in controlling what I can and letting go of what I can't.
.
I can control my effort, even if I can't always control my body's limits. 💜
.
#radicalwellnessrevolution #80dayobsession #teamac #roundtwo #legday #fibromyalgia #fibrofighter #fibrofit #mindovermatter #strongerthaniwasyesterday #keepgoing #effortcounts #efflimits #spoonie #spooniestrong


0

🦋🌞💐 KEEP BLOOMING AND FOLLOW @aa.volkova
"Не люблю цветы, но это просто невероятно красиво 😍 "
⠀⠀⠀⠀⠀⠀⠀⠀⠀
➡️ Click the link in our bio to join us on our own private group in the Mighty Network app for an amazing, exclusive space that we can both build together and grow in together! 👋😀💓🎉


7

MEET & FOLLOW @trishnabharadia 🦋 "Last week marked the ten year anniversary of me being diagnosed with #MS #multiplesclerosis TEN YEARS?! Where has the time gone? It's been a crazy journey since then with lots of ups and downs. In my latest #vlog (as well as battling with a rogue spider 😂) I reflect on what happened that day, what's changed since then and what's stayed the same. Most importantly, there's some shout outs and thank you's to those of you who have supported me along the way - including all of you who follow me on social media 💖 Full vlog available on YouTube via link in bio!" @trishnabharadia
⠀⠀⠀⠀⠀⠀⠀⠀⠀
➡️ Click the link in our bio to join us on our own private group in the Mighty Network app for an amazing, exclusive space that we can both build together and grow in together! 👋😀💓🎉


2

My stock answer to doctors who comment on how upbeat I seem to be despite all the stress in my life...


1

“My metabolism sucks now that I’m older. I’ll NEVER lose weight.” How many of us have thought that? 🙋🏽‍♀️
Yes, as we get older our hormone balance shifts so that our insulin-regulating hormones become less effective. These changes can decrease muscle mass, slow down your metabolism, and sap your energy while increasing belly fat and insulin resistance.

But that doesn’t mean we just throw in the towel and assume that extra weight is here to stay. 🙅🏽‍♀️

If you want to lose weight, you CAN. Not with the latest fad diet, juice cleanse, or MLM protein shake. It takes planning, dedication, and hard work. If you want it, you can do it 💪🏽

Need help? Email me.


18

It’s been quite the week of appointments and it’s only Tuesday! Yesterday I saw my nutritionist and talked to the TPN team about the tolerance issues I’ve been having... after analyzing the whole situation the TPN NP asked me if I have ever had issues with eggs... um, YES! I can’t even be around eggs, cooked or raw, without nausea/vomiting and just feeing overall weird, like jittery but not... I don’t even know how to explain that feeing. Well, apparently the lipids are egg based so she was all “why didn’t you tell anyone this?!” Oops... no lipids for me now! Since I was having worsening symptoms with each bag, she said she’s calling it an allergy and will bump up calories with the sugars. So there’s that... then my nurse came for a deaccess/ reaccess and labs, then I saw GI, who has this all under control and has taken charge. I see him again in two weeks— he said he won’t be in clinic, but generously offered to see me on his lunch break one day! So beyond thankful for my GI team right now!
Today was a trip down to Virginia to see Dr. Abdallah. He looked at the surgical area with the ultrasound and said everything looked good! He was a bit worried with the decline, but unlike other doctors who give up after conventional treatments don’t work, he has found something new to try to help me with these symptoms! Gotta love doctors willing to put together all the puzzle pieces and look for deeper causes! I also had some blood work to look for any autoimmune markers. I always feel better after seeing him... he never gives up fighting for me and holding on to hope, even when I’m completely exhausted and discouraged.
Its been a long day and we’re still on our way back to PA, but I can’t wait to get home and rest! After this past week though, I really needed these appointments. I needed a plan and to know my doctors weren’t giving up.
Beyond thankful to have a medical team ready to fight this with me... hope restored.😊


16

Stuck? Lately in my Facebook group we've been talking about roadblocks, the ones that are external and the ones that we sometimes create ourselves. When you feel like you can't do anything, reach out. Sometimes a fresh set of eyes is all you need in order to find a breakthrough. Want to join the group? It's called Life with Lyme + other Chronic Illness. There are all kinds of classes, coaching and support going on in there each day. I teach as much as I can and you're free to post all the questions you have. Happy Tuesday!


1

I started my infusions for Fabry in 2007, since then my quality of life is improved. I’m really thankful for the people that helped me in all this. Unfortunately even doing my medication, I still living with a lot pain. However, I don’t know when, but I believe that I will have good days without pain.
.
.
.
.
.

#fabrydisease #chronicpain #chronicpainwarrior #gastroparesis #chronicpainawarness #chronicillness #invisibleillness #chronicpainsurvivor #infusionday #fightlikeawarrior #invisibleillnessawarness #homeinfusion #disability #smilethroughthepain #spoonie #spoonielife #geneticdisorder #spoonieproblems #inpatient #pain #chroniclife #spooniewarrior #spooniestrong #painsucks #autoimmune #fibromyalgia #geneticdisorder #doençadefabry #painwarrior


6

The end of the page