Friends! It’s live! @ijustcatstandit
has a fundraising T-shirt (designed by the lovely and talented @keelykristine
) over on @bonfire
! All proceeds from sales go towards giving little Harley the best possible start at becoming an invaluable support and lifeline. And don’t forget, Rowe’s GoFundMe is still live too, if getting a shirt isn’t quite your thing. A shirt, a penny, a share, it’s all helpful and it’s all appreciated. So let’s signal boost the crap out of this one!
I am in so much pain today. All I had today was 2 small candy bars and a flat can of pop(I make all my pop flat, unless I am away from home). I am in pain and really bloated. My feet are also swollen. If that wasn't enough a new scary symptom started today. For a while I would have trouble swallowing, but nothing really alarming. Today I had a really hard time swallowing and it always felt like something was getting stuck in my throat and it hurt. It really scared me and I am very glad that I have an appointment next Tuesday with a motility specialist so that we can see if my slow motility has now moved into my esophagus. I would be lying if I said I wasn't scared because I am a little, but I am putting it into God's hands. He has always gotten me through everything thus far.
#ehlersdanlossyndrome #globaldysmotility #gastroparesis #bloated #chronicpain #stomachpain #prayers #godwillgetmethrough #wewillfigureitout #4days #hanginthere
I’m sick again. My colonic inertia is really bad and I’m barely eating/drinking. If I can make it till Monday? I can see what the doctor wants me to do. Please send me good vibes and strength. I hope you’re all well.
When you have a chronic illness you find yourself immersed in the “warrior” narrative. You battle your illness, you win or you lose, you are victorious or you aren’t, you survive and thrive or you’re something else, something negative, something that means you didn’t try hard enough. Sometimes the warrior narrative is really empowering. But lots of times it makes you feel like you can’t live up to the expectations set out for you as someone chronically ill. Sometimes it feels like you’re a failure if all you can do that day is exist. So know that it’s okay if you don’t always feel like a fighter in the middle of the ring just waiting for the bell to go off so you can kick some ass. It’s okay if you just want to focus on breathing and being and trying to make it through a little bit at a time. There’s no right or wrong way to feel about being sick. .
#omypoetry #poetry #poetsofinstagram #poemsofig
So, I have had a busy few days. Yesterday, I received the award for my essay. My professor said that it is beautifully written and the category was heavily competitive and that winning was validation that my writing is good. I am starting a little garden this spring to have a hobby to get me outside everyday. We have found out why we think I am reacting! We did the IV 3000 today and I was still itching. We are pretty sure that I am allergic to the chloraprep swabs. I am on Benadryl pretty much around the clock. I have the motility specialist Monday, adolescent Wednesday, and vascular surgeon Thursday. Busy busy week. My mom and I were discussing about my childhood and my health. I was either always sick, hurt, or just didn't feel well. If it turns out that I have mito, we are pretty confident that the days I ended up in the ER for feeling so horrible when I was little, that they are mito crashes. I also have hearing loss in my one ear and my vision changes FAST. We always thought it was from diabetes but we are starting to think there may be another aspect. I literally have to get my prescription adjusted every 3 months. #typeonediabetes #gastroparesis #gastroparesissucks #gastroparesiswarrior #pots #posturalorthostatictachycardiasyndrome #ehlersdanlossyndrome #mitochondrialdisease #tpn #tpnlife #gjtube #broviac #broviacline
My good friends baby needs cataracts surgery. 😭 He was born on March 1st, 2017 and he has congenital bilateral nuclear cataracts, which means they're symmetrical cataracts affecting both of his eyes.
Because he is so young, and it's so early in the year, the deductible on the insurance has not yet been met which means insurance doesn't cover the surgery.😔 If you're able to donate please please do so, they'd greatly appreciate all the help they can get. ❤❤❤
⚠️Youcaring is preferred as gofundme takes part of what they earn so they only get a portion of all they earn, with Youcaring they get the full amount⚠️ ❤https://www.youcaring.com/evander-1135995 ❤https://www.gofundme.com/eyes-for-evander
My second video is up! I will put the link up in my bio! It’s all about how my port surgery went and what it felt like! Please like, comment, share and subscribe!
I’d add my own caption, but this sums it up.
Rowina the 2nd lasted thru one infusion. Okay maybe half of one - my hand was full of saline in my interstitial space by the time I realized I had blown again.
Slick, slidy #hEDS
veins, darn it!
Now we need to work on the authorization for a midline catheter. I understand the line is very, very long. I'm trying to convince my veins to stop collapsing like I do 😁
This is not a contest!
Let's call you a winner and get on with things!
One sick MichelleInTheMask
... Who unfortunately had
today after diarrhea... Then #hypoglycemia
...gotta love good ole #dysautonomia
20 minute Paleo Sloppy Joes turned out great. I didn’t measure the ingredients but here is how I made them (swipe for ingredients):
✔️Spicy mustard @woodstockfoods
✔️Date Balsamic Vinegar @thedatelady
✔️Adobo spice @frontiercoop
✔️White pepper @frontiercoop
✔️Grass fed beef @panoramameats
✔️1/2 yellow onion.
Sauté chopped onion in oil. Add beef and chop and gently sauté until pink is mostly gone. Sprinkle beef with aminos and stir. Add lots of ketchup, a big squirt of mustard, a big dash of date vinegar, a big sprinkle of adobo, plus salt and pepper. Stir and simmer briefly. Adjust taste as needed. I didn’t try this, but Brandon says it was great. Serve over #gluten
-free buns or a sweet potato.
Unblocking my sacral chakra with this citrus maca chai smoothie tomorrow morning 💯Learn more about unleashing your feminine energy on the blog✨
TWO visitors this week. I am so grateful that I had a good enough week that I was able to enjoy this. I have been depressed and feeling so isolated. I’ve been crying frequently and missing being a functioning human in society. I’m thankful for those friends that will come over and just chill in bed with me, and laugh for hours. I’m at the end of the week now, exhausted, but I feel more alive. This was a good reminder that I need to make a concerted effort to not isolate myself.
The patch went really well. Although, I definitely don’t recommend neck IVs. Last minute change of location to my lumbar spine for L3-4 with blood. Will still be getting the fibrin patch on my thoracic spine on April 9th still. I guess I should be thankful that I don’t have to wait long for the next surgery, and that I get to combine the recoveries. Sometimes you’ve just gotta laugh that the oxygen/CO2 makes you look like a beaver. Thanks for all the prayers! 100% flat for the next 3 days, and back to breakfast in bed! 🥞🛏💁🏻♀️
So glad I got to go keep @cece_getyoursicktogether
company today in the hospital ❤️I'm seriously so thankful for this friend, we have so much in common and I can't believe we only met this month! (Sorry for the terrible hospital lighting!) also I have a new vlog up!
Apples 🍎🍏 .
2 or more apples a day keeps the doctor away ~ and aid in the prevention of colon, liver, breast, prostate, and lung cancer and can also dramatically decrease the risk of a stroke. .
They are a highly alkaline fruit that have the ability to quench both an immediate and cellular-level thirst. Apples are also an amazing detoxifier and contain both malic and tartaric acids that help remove impurities from the liver and gallbladder. .
Apples are especially rich in phytonutrients and antioxidants. They have been shown to be beneficial for neuro-degenerative problems such as Alzheimer’s and Parkinson’s disease as well as for bronchial problems such as asthma.
Red apples are your best bet ~ they are higher in phytochemicals and disease fighting nutrients; Apples with red skin contain anthocyanins and even traces of malvidin (a type of anthocyanidin), which are partially responsible for the red color. These pigments have anti-obesity properties and compounds that increase digestive strength, encouraging weight loss 💗
Apple info from @medicalmedium
Books: ‘Medical Medium ~ the truth behind chronic and mystery illnesses’ ‘Life Changing Foods’ ‘Thyroid Healing’
. . ✨🙏🏻🍎🕊🍎🕊🍎🕊🍎🙏🏻✨
My extent of my romantic-ness
I'm so mad just so frustrated! I was giving myself my monthly B12 injection and my syringe was apparently broken because it went everywhere except in my leg where it belongs. I don't know if I should call my Dr on Monday and try to explain what happened and get more or if I should just tough it out until next month. I'm just in too much pain and too tired to deal with this. 😣
#spoonie #chronicillness #gastroparesis #pots #eds
My body does not know how to function today.
Cancelled my first student because of terrible D all night. Then I thought it had finally eased up enough to go out (thanks to adult nappies for accidents because turns out it had -not- eased up). I vommed twice with my first student and am now sitting in my car debating whether to go to my next student and just suck it up, or cancel and drive home.
It’s further to drive home currently than it is to get to my next student. At least there I can access a bathroom. And I need the money because I need meds from the chemist later today.
bittersweet 💛 10 days with these compassionate, competent, knowledgeable, awesome doctors & nurses & childlife. this is such a contrast to this time last year at Children’s in Dallas. we were validated rather than talked down to. this hospital stay was difficult but I love TCH. for the first time ever, mom & I realized that we really loved each one of our many nurses that we saw. and we saw so many! we will be sending them thank you cards, because they were just that good.
mom learning some PICC stuff & getting TPN situated 🌸
we’re blessed. & determined to make this roadtrip fun- God knows we all need fun. keep the prayers coming! your support these past days have really given me hope & comfort. you’re all gifts from God.
day10. discharge day!
Been in bed all morning. Been more than a year since my stomach issues started and I'm still figuring out what I can and cannot eat. #gastroparesis
This is hard for me to share: First picture I’m under 100 pounds, hair falling out. Second picture a much healthier weight. 💁🏻♀️✨
When the doctor’s told me they had no more answers and couldn’t save my life, I came to a point where I gave up. I’d fought so hard, researched, tried every insane, holistic, natural and unnatural ways to keep myself alive. ✨
Being a mother, a planner and a determined person all my life it was hard to simply stop trying. I’d made a form of peace with dying because to hope took more energy than I had. ✨
But the universe has a sense of humor and when I stopped trying I was given a medication the doctors had never tried. It started working, then they tried something else and that started working too. I was getting stronger, gaining weight and getting my mind back. ✨
Now after making peace with my own death, making peace leaving my children with no mother, my partner alone, my mother with no child I had to figure out how to live again. ✨
I thought I’d be thrilled at a second chance at life but this wasn’t the same life. The energizer bunny I’d once been didn’t exist. I couldn’t do everything or much of anything by myself. I was a completely different person.✨
I still struggle everyday to find where I fit in my world. It had to move forward without me while I struggled for years trying to survive. ✨
I am starting to wake up to who I am at my core again. I didn’t die. I survived. I did keep myself going until there was an answer. I am not done. ✨
#survivor #nevergiveup #starvingforacure #miracleshappen #lifelessons #nevergiveup
#lawofattraction #imblessed #positivity #miracles #powerofnow #bethechange
#naturalbeauty #makeadifference #california #californiaadventure
#californialiving #californiagirl #disabledandproud #disabledandcute #ehlersdanlossyndrome #pots #gastroparesis #chronicillness #chronicpain #elastigirl #bendygirl
🖤Normal People Illnesses🖤
New post on blog today, link in bio✨
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This last days Have been a roller coaster 😳, everything is a chaos on my house because my dad is in the hospital ! So I have had to be an actual adult 😂 to set my TPN alone , put my meds , my bother meds ... and with the CIPO painful obstruction I am dealing right now makes everything harder! , I am trying to find joy in even the smallest things! Because I know my life will be not so long ... ! So I am enjoying as much as I can !! Such as in this picture that was taken without notice! Thank you so much for all the support and love 💙💙💙#gastroparesis #CIPO #lupus #eds #addisonsdisease #tpnlife #tubielife