What’s my chronic illness? If I thought you knew it, I’d say it. Let’s start with a Urea Cycle Disorder - does that help?
I generally know how to treat it, but sometimes still the ammonia level in my blood can get high which causes problems like being spacey, exhausted, and in pain all over.
A little more info in my stories. And thanks so much to those that have messaged me - again tho, my brain really doesn’t work rn. 😘🙏
Really tho chronic illness is chronic illness - they are all fucking challenging to live with and they make you stronger than you could imagine. 💪
Day 79 - Fever
I have a fever. Not because I'm sick, oh no, I have a fever because I upped my weights at the gym yesterday and in order to cope with all the micro-tears, my body has inflamed. None of the MS symptoms have decided to rear their head though, just normal fever fatigue and for once, I'm actually quite cold and turned the AC to low. (Who am I? Is this an alternative universe? Also omg it's been so long since I upped my weights) 😱
That's all right, I took some ibuprofen and have just flexed in front of the morrow for a few minutes (ow). I'm at 60lbs for best press and seated row now. I forgot the other ones but I went up about 10lbs each. Pretty stoked. I might even start reintroducing free weights if my left side behaves with the numbness. Now if you'll excuse me, I'm gonna roll with a dryer ball.
#100spoons #multiplesclerosis #livingwithMS #spoonie #MSwarrior #gym #workingoutwithMS #fitnessnotweightloss #MSfit #spooniefitness #spoonielife
of that one random weekday night a good while back my husband and I were both so stressed out and exhausted we decided to have an impromptu datenight at Bisbee's Table, only to have the most fun drink ever. (Well, if you like watching things being set on fire as much as you like that smell of a roaring campfire, that is...) So tasty, too. #Smokin
He took me out to Mornings Café for lunch on the way back into town from the doctor today, but said he would gladly take me back out and down to Old B tonight if I want to shop or go to dinner or something and keep my mind off all of this. I waffled on whether I want to go (still a bit sore from one test in particular, too) but once I decided to start looking up which shops had any sales or events, and which open restaurants had menus that looked most accommodating for my medically-necessary diet, he got a ping about work. So day off or no, he's back at it, and I am pacing... And looking at all these photos I meant to put up on the inBisbee site once I rebuy whatever domain I'm going to end up buying now that my original one got sniped (long story, in the blog! 😅). I guess I can go poke at some leftovers, too.
#HappyMonday #SpoonieLife #CrazyDays #inBisbee #BisbeeLife #Cheers #Campfire #Whiskey #DelBac
#Flashback #Throwback #BisbeesTable #morehashtagslater
What do you do when you are in bed all day, but starting to feel better.... You know.. that in between phase where If you start to do stuff you will be back in bed...but you are starting to go stir crazy from not doing things ?? Send me some suggestions!
What I do know is that it has been MONTHS since I have been this way and that feels like such success!!! ♥️💖😍 Thank you @medicalmedium
and spirit for keeping on teaching and sharing your message of healing !! It has been a ride for sure.
Seeing other people heal, like @reclaimersofhealth
And so many others, is so very inspiring !!! It also shows that healing is Possible !!! 💖😍😊💞😊 When so many have a 🤔look on their Instagram Feed instead of an AHA! I know this can be healed look!
Sending love to you on your healing journey. Check out these amazing people I posted here too.. their stories of healing are inspirational! 😊💕❤️ #medicalmedicumcommunity
#support #mcs #spoonielife #chronicfatiguewarrior #plantbaseddiet
Bummed to cancel on my yoga class tonight, but I’m having serious nerve pain in my arms due to an inexperienced tech digging into both arms while taking my blood today 🙄 I’ve been thinking a lot about how much the ‘maintenance’ phase of having a chronic illness is so unique and different from the other stages. It’s so easy to forget to stay disciplined with everything that’s required to keep my chronic illness and autoimmune in remission, mostly because it’s consuming and exhausting after so much hard work, healing, and self-care, and sometimes it’s nice to feel ‘normal’! But after crashing with flares and illnesses in the past I’m diligently staying with my plan. Today I went to the endocrinologist for a blood draw to check my C-Reactive Protein which is an indicator of inflammation levels, I get the results on Friday!
Brought this kid to experience his first ever chiropractor adjustment. Can you tell he's nervous?! 😂
Chiropractic care has helped me so much with my fibro & chronic pain. And having a friend that takes good care of me & my boys is awesome!
“I choose to live in the present, because when you suffer from chronic illness you don’t have a choice” We have a new blog post up and ready for you! Link in bio 👆🏻
New post is up talking about how to talk to your supervisor at a new job about your chronic illness / condition! 👩🏼💼 •••
It’s important to talk to your supervisor about your health and about the possible accommodations & flexibility you may require. And if you ever have doubts or feel like you are a burden to your employer, just remember - you are never a burden and they hired you for a reason - because you are awesome and were right for the job! 👩🏼💻
I’ve been open about my mental heath issues of the past but not completely about lately and how the constant doctor appointments and not being believed or helped has added up and taking it’s toll. I’ve been so low lately. Like deep low. It’s scary and fighting those thoughts alone takes so much energy. I’m so tired today and hurting a lot because my anxiety is increased on top of it and of course those correlate. Thank goodness we are getting the house put together and I can knit in bed and have some #parksandrec
therapy with my heating pad and comfiness. .
#bedknitting #depression #anxiety #feelinglow #medicalmalpractice #thestonedknitter
We'll do our best but people will still try to twist our good intentions into something bad. Don't let them, remember why you do this, stay true to yourself 🦋💛
: The Truth About Making Health a Priority
This post is for the people who act tough and why it’s okay to let that guard down sometimes.
The truth is I think everyone should make their health a priority in some capacity.
Don’t ignore your body when it’s trying to tell you something is wrong. There’s nothing heroic about dealing with something that can be fixed, or at the very least, treated.
Full post on 2LWithIt.com
SO MUCH THIS. Anxious thoughts and depression are so incredibly linked to chronic illness and chronic pain. I'm not depressed when I don't have migraine or pain. Working on not being depressed or anxious when I am in an attack or pain.
Another Venn. Not all of this directly relates to me. I’ve just added some other people’s experiences in. I realise that some people cannot work, some people have no healthcare and that some experiences of illness and disability are not represented in the circle. .
[image description: hand drawn digital illustration of a Venn diagram. Two circles intersect. The one on the left says “my chronic illness” and the one on the right says “things I worry about”. In the middle it says “am I disabled enough? Where is the toilet? Feeling guilty I need to sit on the train, should I give up my seat? Do I have my medication bag? Do I have enough money to pay for help not available on the nhs?” Then above there are the following which don’t fit in the centre but should be there “worried people will blame me. Can I feed myself? How well am I hiding the pain? Is someone going to give me terrible advice?” Below the diagram there is more writing which doesn’t fit in the centre “will it/places be accessible? if I tell someone about my illness, will they believe me? *excuses* How to get through work. Do I have enough sanitary products? Knowing doctors won’t believe me. (+ 1,000,000 more...”. The background is pastel pink. ] #chronicillness #mentalhealthrecovery #spoonie #spoonieproblems #spoonielife
I get asked a lot “how do you deal this all of this with a smile on your face”? The reality is, I don’t have much of a choice in terms of dealing with all my health stuff. I can’t run away from my body to get a break, so I try to make the best of some pretty hard times, otherwise I’d be miserable all the time. I have always been smiley, and going through all this medical stuff is really hard, but it’s really important to smile and try to find things that make me laugh and smile. In the hospital (and at home), I watch funny and ridiculous reality TV shows (Bravo amirite?) and try to laugh as much as I can.
I was recently telling my spinal cord stimulator rep that my team missed the fact that I had a pneumothorax and sent me home anyway after my total colectomy. I was laughing because it was honestly so ridiculous and he was surprised that I wasn’t angry about it. I had my moments after I was re-admitted, but now it’s just comical to me.
I always give myself the time I need to feel sad, angry, shocked, etc. when things happen. I feel strongly about feeling my feelings and then getting back to my “normal.”
Not gonna lie... I kinda wish this was available in my size. 💪
Even on the darkest of journey one can find light if they push far enough.... “From the book of Kenny”
They're here! Waterproof and Brown! 💕😁🎉
I used to never check my bank account because I was too scared to see the balance. I wouldn't know how much I had until I got the alert that my account was in the negatives. I'm all too familiar with the, "I can't travel, I'm broke!" mindset.⠀
Are you tired of saying that to yourself? Comment below the number one place you would go if money wasn’t an issue ⬇️⠀
I can relate to thinking that you can’t travel because of your bank account balance. Trust me, I get it. It can be hard to juggle student loans, rent and so many other expenses when you're in a state of constant lack. Traveling seems out of the question. ⠀
My first tip to be able to afford traveling is to change your money mindset. Getting out of this mindset is life changing because the experiences that come with money abundance far surpass the work it takes to get there. Being able to travel the world with the people I love is incredible. ⠀
I’m so excited to announce my first course on money mindset. This course is 14 days to teach you the law of attraction and all the tips + tricks that have worked for me to manifest abundance. ⠀
This isn't about envisioning money showing up at your doorstep- it's about doing the deep subconscious work to attract more money into your life. It's about uncovering your limiting beliefs and finally trying something DIFFERENT.⠀
$21 for 14 days... only $1.50 a day to invest in yourself and attract more abundance into your life. The course will include permanent access to an e-book, live videos and exercises for every day. I will be dropping all the knowledge I have learned and how I made space to afford a trip to Bali 🐘🐲⠀
Message me to get enrolled 🌱
Finally getting a chance to sit down, way past when I would have wanted to be in bed 😴
I was sick towards the end of last week, felt a lot better yesterday and today but I had prearranged plans, so my chores had really built up. Didn't get home til 8:30pm, then had to do laundry, put out bins, put away the massive pile of clothes in my room, and do 4 days worth of dishes 😕. I could have left it all, and gone to bed, but I do feel a lot better having got it all done.
I'm not really sleepy though, so I'm just going to have a bagel, cup of tea, and watch one episode of friends then go to bed 😊😴
#bagel #tea #bedtime #supper #tired #donein #fatigue #spoonie #spoonielife #spooniewarrior #chronicillness #chronicwellness #chronichealth #health #wellbeing #invisibleillness #butyoudontlooksick #chronicpain #chronicfatigue #fatigue #colitis #IBD #IBDWarrior #colitiscare #mindfulness #mindful #food #foodstagram
Do it with passion or not at all 🌻💛🌼☀️
Monday morning blood draw. ✔️
A few months ago my labs showed low iron & pre-hypothyroidism.
Both of theses deficiencies (among others) are common in EDS patients. So, I was placed on an iron supplement & levothyroxine. Today’s draw will check those levels. 🤞🏼
Since starting both pills, my energy has improved & my hair is falling out less!
Often in chronic illness, patients report a lot of different symptoms. It’s important to write them all down & share with your provider.
This has helped my team treat me. It’s important to find a doctor who looks at all symptoms to help determine a diagnosis & treatments. The “big picture” is important.
And to everyone who has seen someone who doesn’t believe you can have multiple symptoms, please know I believe you!
Don’t doubt yourself. Listen to your body. And Don’t give up searching for a doctor who believes you. They are out there.
Sending healing energy & positive vibes always. 🙏🏼
#blooddraw #bloodwork #labs #mondaymood #heds #eds #pots #dysautonomia #mcas #hyperthyroidism #hashimotos #chronicillness #chronicpain #invisibleillness #spoonie #spoonielife #healingenergy
Never fully dressed without a smile 😊
Feeling good today.
With my new meds on board I slept properly for the first time in over a month!
I am heading to the studio with my arsenal and some good food and hoping for a good day 🤞🏻
Yesterday proved the morphine will be worth it. I know that opiate pain relief is never able to be a long term solution but I think it will give me a break from pain enough that I can function for the week, or however long we continue with this treatment, well enough that I needn’t ( to quote my dr yesterday) use so much courage and strength to survive the bare minimum. It feels like a blessing.
I also had the $200 refund for the FDI crutches I ordered a week ago - the order was cancelled by U-Buy because of fraud detection on the purchase. So I have money again. I also have found some that are comparable for a 1/4 of the price on another more reliable site so I’m still getting new crutches 💪🏻
But yeah... yesterday was quite something. I got so much done and could focus and talk with mum with full attention and even join her with cooking dinner! And then a good sleep at the end of it all!
Nov 19, 2017 & May 12 2018...Moon face is too real 🌚🌚🌚🌚🌚 I didnt gain or lose ANY weight between these two pics... in Nov I had to take 40 mg of prednisone and day, and I was able to get off completely in June. -----------------------------------
Things were good for almost 2 months, until the beginning of August when my body flared up soooo bad🔥🔥I had to get back on 2.5 mg/day and then 5 mg/day again. -----------------------------------
This inspired me to really take the reigns on my diseases, my body and my life. I'm tired of hurting to move, having to work from home and just not feeling normal. This page will document my journey trying to heal my body through a whole-food, mostly plant-based diet
#spoonielife #journeytohealing #healingthroughfood #rhuematoidarhritis #RAproblems #moonface #ralife #fibromyalgia #fibrowarrior #rawarrior #raprincess
Living with chronic illness and chronic pain often doesn’t feel like living, at all. Not even surviving. Just existing. Just I’m stuck here, like this, every single day, indefinitely. Just wondering how much physical pain I can actually withstand. Just wondering if it will ever stop. Will I EVER have another “good” day? Good doesn’t even mean pain free. It just means a day where I can force myself to get out of bed, shower and leave the house. How much pain can I tolerate before I completely crack, to the point I can’t be put back together again, emotionally/mentally? I’m 38 years old. I can’t imagine surviving another 30+ years of this. I can’t imagine wanting to. And with all the capabilities of medicine and doctors, I don’t understand why I’m having to. Why is this acceptable? I’m just so tired of all of it. The toll it all takes, not just physically but emotionally, after a decade...is just too much. I don’t want to live like this anymore. I don’t want to spend my days in bed because I’m in too much pain to move. I don’t want to keep up with 15 different doctors and all their follow up appointments. I don’t want to constantly battle my insurance to try to get them to cover all my medications and procedures. I don’t want to watch my savings be drained by the never ending bills that are on top of the never ending bills of regular life. I don’t want to be terrified of what will happen to me when the money runs out and I can’t take care of myself. I don’t want to live under the constant stress of all of it, which only contributes to further damaging my health. I don’t want to live with the constant guilt of always letting people in my life down because I didn’t feel well enough to come to an event, or even to meet for coffee. When does it get better? #fibromyalgia #posturalorthostatictachycardiasyndrome #potssyndrome #dysautonomia #hypogammaglobulinemia #migraine #bonepain #kleppelfeil #bronchiectasis #asthma #allergies #pcos #polycysticovariansyndrome #adenomyosis #raynauds #hizentra #plasmainfusion #linqmonitor #linqimplant #linqheartmonitor #chronicillness #chronicpain #spoonie #spoonielife #thinkzebra #butyoudontlooksick #thisiswhatchronicillnesslookslike