#spoonielife

I was kinda doped up on snow, and Rachel had just hit me with a snowball so I couldn’t open my eyes well 😂 I’m in LOVE with this! Y’all, this is literally the first time in my life I’ve ever sat at home and looked out my window to see inches of snow outside. It’s glorious. And so fluffy!! The pain lasted quite a while after coming back inside, but I was actually outside without my mask, doing an activity and taking pictures and it was almost as if Hannah, Rachel, and I were little girls again. It’s a truly magical morning to appreciate this gift from heaven. 💕 (more pics to come!)
#snowday #snowlove #snowstorm2018 #louisiana #spoonielife #spooniestrong #ehlersdanlossyndrome #mastcellactivationsyndrome #mastcell #gastroparesis #fibromyalgia #raynauds

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🚨Ohhhh emmmm geeeee everyone🚨 Right here in my hot little hands is the prototype!!! I cried when I saw the inside it is exactly what I dreamed up 💛 Even though it's only the prototype, I'm obsessed with the colours (this is almost a fluro yellow and the inside is something different and awesome 🙈🤐🙊) and I am so stoked I got to bring it home!
.
.
. So that's the great news!! The other news is that my envisioned timeline was brought down to the earth and a much more realistic date for being ready to ship out orders is June.
I know it's a few months later than I had hoped but this actually gives us more time to plan the launch and get fun stuff like customised packaging ready 👀
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. I was starting to get stressed about trying to get an able bodied person's to-do list done in a disabled body 😶 but now that I know I can take longer to do my emails and projects I feel so much better 💖 Thank you universe for that blessing in disguise! And thanks so much to everyone on this journey with us! So stoked I finally get to start showing you pictures of our creation!!

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Food for the month (extra supplies not pictured). It's so important to be organised, to make all the extra work become part of your normal routine. Its amazing how you learn to adapt to life when you have to. I have been loosing a lot of weight recently as oral intake has stopped completely, and due to excecvie bloating I have my feeds on very low. Therefore there are not enough hours in the day to get my nutritional intake..... My dietician has therefore started me on a more concentrated feed (which didn't agree with me in hospital, but I'm going to preserver and hope it works!!) #fibromyalgia #ehlersdanlossyndrome #eds #Pots #chronicillness #chronicpain #gastroparesis #neurofibromatosis #invisibleillness #hernia #fibromyalgiapain #fibrofighter #hypermobility #organised #njtube #spoonie #fighter #hEDS #feeds #spoonielife #cyst #nf1 #eds3 #tubedependant #hospital #feedtubedependant #njtube #hospitalprocedure #allergies #asthma

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Flu Day 9. As I snuggle with my owl, made by amazing momma carolyn_munholland - hand knitted love, let’s do some flu + autoimmune disease education 🧐 The flu sucks for everyone but as you can imagine it can be more of a pain in the ass for those suffering from an autoimmune disease. Many have been shocked when they heard I’ve had 3 viruses in the last 5 weeks but it really isn’t all that surprising. Since I was little I remember being knocked down with a virus & then catch everything else around following. Why is this? Well my immune system is compromised due to my body having the autoimmune disease Interstitial Cystitis, chronic painful bladder syndrome. What does it mean to have an autoimmune disease? An autoimmune disease is when the body’s immune system attacks healthy cells. Now the body’s immune system is suppose to protect against disease and infection. But with an autoimmune disease your body’s immune system will attack the cells they are meant to protect. So my immune system & that of anyone with an autoimmunity is working in overdrive. Fighting a virus, like the flu, aggravates the already aggravated immune system which can cause flares & longer recovery time. & when your immune system is weak & struggling to defend itself it’s no wonder why you start catching every virus going around. I personally feel like at virus 3 that I should be placed in a giant bubble until there is a little more fight in my immune system or until flu & cold season is over. But alas I can’t find a bubble that I would be able to Yoga in without popping it so it looks like I just have to stick to a protocol to help my body get stronger. What’s my protocol? First off REST. The body NEEDS rest when fighting a virus, especially one as tough as the flu. Hold back on the daily activities & put most of your energy in the battle taking place inside your body. Since I got sick the majority of my time has been sleeping & resting. It may feel lazy but it’s what the body needs. I like to think I’m “actively” resting & sleeping for I might look like I’m just passively lounging about on the outside but on the inside there are soldier cells kicking ass! This is part 1 & # 1 of my protocol.

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What #chronicillness looks like for me.
I didn’t realize how powerful this picture would be for me and my husband. Wow.
#chronicillnesswarrior #spoonie #spoonielife #invisibleillness #butyoudontlooksick

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Wish this filter could follow me around in person, I definitely need it with how bad my skin is atm. It's the first time I've got dressed properly & put some makeup on, I've been too unwell. I even made it out of the house for the first time in weeks. It's cold! #spoonieselfie #spoonie #spoonielife #chronicillness #chronicallyill #chronicpain #disabledandcute #disability #butyoudontlooksick #invisibleillness

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Finding YOUR way is the only way to SUCCEED!! Bc when we try to meet others expectations, doubt will ease in!! We compare ourselves to others, we know where that leads. Failure.. cycles of failure!
I nanny at 930 and I really wanted to get my workout in before. BUT my ra feet had other plans!
That’s okay tho!! I have to adapt to evvverrryday! And that’s okay, I know I’m bush-hogging that trail! 💚

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What a difference 48 hours makes!
Left taken Sunday as I spent the afternoon taking yoga photos.
Right, today. I have only just managed to keep eyes open for more than 20 minutes and get out of bed to go get food and drink.
When physical and mental exhaustion hits. It hits!
Behind the scenes of my business is a lot of work which no one sees as a business woman with determination -
I do my own website.
Emails, design and make posts/pics/videos for social media.
Newsletters and email blog, take and edit yoga pics, script, type, record, edit and upload videos. And with the warrior Hub in progress I’m also. Designing the 8 web pages, designing, typing, making ebooks, worksheets, making audios, doing talking videos and yoga routine videos all to be uploaded in the Hub. Plus designing the layout of the monthly warrior magazine and planning each issues content and monthly focus.
Annnnd I’m also planning a free workshop for March which will be a Video and magazine for everyone.
I’m not complaining at all. I adore my work, I adore creating, making, planning and writing it’s natural to me, it’s a hobby as well as my living and it makes me feel alive and grateful I can do all of this to help inspire so many others. These bad days I choose to see as my body telling me I’ve done enough for now. (I’m a workaholic) and also tells me that I’m successfully getting my business how I want it and mapping out where I want it to take me. I also find I have great future idea moments on my bad days as I’ve stopped to hear guidance! (Already got xmas and new year goodies in pipeline and the next massive project after the Hub)
I wouldn’t change one thing except having just a bit more energy to do more videos more often. Because I know the power of the video and it’s the biggest frustration for me.
#myalgicencephalomyelitis #cfs #mewarrior #cfswarrior #cfsme #chronicfatigue #chronicfatiguesyndrome #spoonie #gooddaybadday #invisibleillness #unrest #timeforunrest #spoonielife

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Woke up drenched in sweat, and crying from the pain. I don't know how much longer I can keep this up. I truly don't. 😭😷😞😪💔 #goodmorning

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Hubby buys me the prettiest and most bizarre flowers 💐 no idea what they are but they’re so pretty #flowers #prettyflowers #spoiledbymyhubby #spoonie #spoonielife

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Uh! Paper gowns seriously need to be a thing of the past! Anyways the new rheumatologist I met with yesterday was amazing! He did an ultrasound of my swollen hands and guess what, they were inflamed. Although 2 other rheumatologist out right told me nothing was wrong with me. It felt so good to actually have a doctor on my side who actually didn't doubt what I'm dealing with.
So we started Plaqunil and took some blood work to start!

Also my bruise has finally subsided since the heart cath.

#spoonie #spoonielife #chronicallyill #rheumatology #swollenhands #inflamation #plaqunil #sjogrenssyndrome #arthritis

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Update: I did the concoction of coconut oil, honey and salt again last night for the second time. And I slept for 7 hours. It's unusual for me to sleep for that long, especially after a 10 hour night the night before. So, so far... so good. I'm hopeful, but cautiously so. One who does not battle with a debilitating chronic illness may not realize that too much hope can be as dangerous as none at all. The challenge is to be realistically hopeful. So, I can see myself in a place where sleep isn't a battle, however, this has a lot to do with my own acceptance of my circumstances. Not just the resolution of my sleep issues. Acceptance in the moment is just as vital to my recovery as seeking out and trying new treatments. So, right now... I'm hopeful. We shall see what the tonight shall bring... #pwme #mecfswarrior #spoonie #spoonielife #spooniesleep #insomnia #mecfshealing #ineedmysleep #keeptrying #myalgicencephalomyelitis

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@artezacolors @strathmoreart Showing some of benefits of using quality, yet #affordableart products on the proper artist paper. These Arteza Artist Quality colored pencils went down insanely easy on Strathmore 400 Series Colored Pencil paper. They both make for easier blending, imo. It looks like I had to press down hard, but I didn't. 😊 #chronicpain #chronicbadass #art #artistsoninstagram #coloredpencil #instadraw #dailydraw #myart #fibrowarrior #rheumatoidarthritis #spoonielife

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#hotwaterbottle you have been my best friend the past few weeks......... 😍

A hot water bottle always makes my pain just a little bit better..... Although I have to have a fan on or window wide open as I am always so hot (my hubby doesn't understand why I need both lol.... But it is so needed!!!) And look what's best, IT ALL MATCHES.
#fibromyalgia #ehlersdanlossyndrome #eds #Pots #chronicillness #chronicpain #gastroparesis #neurofibromatosis #invisibleillness #hernia #fibromyalgiapain #fibrofighter #hypermobility #cosy #njtube #spoonie #fighter #hEDS #sedation #spoonielife #warm #nf1 #eds3 #tubedependant #hospital #feedtubedependant #njtube #hospitalprocedure #allergies

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