it’s funny how God knows what we need, & how He answers prayers when the situation seems to be hopeless.
our awesome GI specialist we’re seeing at the hospital told us he was going to call Mayo but not to get our hopes up in terms of trying to change things. he hated the idea of me traveling 19 hours, but he hated the idea of waiting until July- when they said they could see me- even more. but they called him back today & said they’d make me a VIP patient. they could see me sometime in the next month. so that means, I can put off traveling & stay inpatient. I’ll be transferred to the campus with the motility team. &, medicaid covers the cost of TPN. my mom had to quit her job today, so that’s a huge blessing. God is really good to me, & He is the one who understands everything that I feel & endure. it took me a while to realize that He sometimes heals the spirit before the body. my spirit breaks over & over, but He’s always there to heal me, over & over again. even when things feel hopeless, He is always in control. & He’s always working for my good & His glory.
my new friend @emma_hurstt
sent me this wallpaper today & it was definitely something I needed to see ✨🌸
tomorrow will be ✨discharge day✨
then time to head to Mayo. they are talking about after my week at Mayo, unless they decide I need to be kept inpatient there... it looks like I may be going home & seeing motility specialists on an outpatient basis. I’ve lost some weight, but TPN is doing its job. I’ll be surviving on TPN. at home. for some reason, that makes all this feel too real. TPN might be my new normal. I want to kick & fight that. I don’t want this. and it would be really easy to get bitter. how did I go from annoying GI symptoms to complete paralysis of my intestines & stomach? we’re learning how to deal with this. I need a whole lot of jesus. I took eating for granted. even when I had SJS, & couldn’t eat much for months, I wasn’t dependent on tubes & central lines. I want this to be temporary. I want my old normal back.
we’ll deal. & we’ll learn.
MCAD tip #4
: anti histamine juicing! I’ve talked a lot about this before. Upping the amount of anti inflammatory and anti histamine foods we eat can help us empty our “histamine cups” and be able to react less day to day. Juicing is a great way to do this! Juicing lets us pack in a huge amount of nutrients in a smaller, more easily digestible package. Fennel, cucumber, cilantro, parsley, thyme, and ginger are all potent antihistamine veggies and make a great, refreshing juice. If there’s any of those foods that you can’t tolerate, just leave them out! I have actually made forming hives go away by drinking this juice combo before. I’m currently taking a break from juicing due to the Intro GAPS protocol, but I highly recommend doing it if possible twice a day... first thing in the morning before eating anything, and around 3pm which is a naturally detoxing time for the body. I just juice two glasses in the morning, drink one right away and store the other in an airtight container in the fridge for later. #juicing #antiinflammatory #antihistamine #foodasmedicine #nutritionasmedicine #histamineintolerance #mastcellactivationdisorder #mastcellactivationsyndrome #mastcelldisease #mastcellactivation
my mom, me, grandma, & brother all participated in #worlddownsyndromeday
. celebrating differences & some unique, awesome people!
I'll rise up
Rise like the day
I'll rise up
In spite of the ache
I will rise a thousands times again
And we'll rise up
Rise like the waves
We'll rise up
In spite of the ache
We'll rise up
And we'll do it a thousands times again
(This song has been on repeat lately so I thought I’d try to pick up some of it😬)
Fun fact: Before I got sicker, I was really into competitive piano and got to play at Carnegie Hall!
Nowadays, you can find me fooling around at home and playing random songs by ear, like this mashup☺️. It’s a bit hard to look back on how much I did in the past, and don’t now, but I still love piano, and have to remind myself that it’s ok.
It’s ok because if nausea and pain is bad, I can play as a distraction. It’s ok to change. It’s ok to have to take care of yourself.
Happy mid week beautiful fighters!
#mastcellactivationdisorder #mastcellactivationsyndrome #mastocytosis #gastroparesis #spoonie #spoonielife #chronicillnesswarrior #chronicillness #butyoudontlooksick
My happy place....after 4 months off from yoga bc of illness, surgeries, hospital stays, and feeding tubes I was able to slowly start yoga in February but then more health issues arose and now that I’m being properly treated for Mast Cell Activation Syndrome I am finally really getting back into my practice! Apparently yoga is super amazing for my health problems and is one of the few exercises I can do.....which is perfect bc it’s where I belong. Today was a little stressful so I’m throwing in a second mat session to decompress! Hopefully after a year of being very sick, I am finally on the road to better days! #mastcellactivationdisorder #mastcellactivationsyndrome #yoga #nomakeup
WHAT IS COAT HANGER PAIN?
Coat hanger pain is extreme tightness in the neck and shoulders that occurs in patients with dysautonomia, particularly POTS, OH, and AAG. •
Coat hanger pain is different than the typical pain pattern, as coat hanger pain is caused by depletion of oxygen. •
Because dysautonomia can cause abnormal venous pooling (blood that rushes to the legs or is inappropriately pumped), oxygen is “stolen” from the shoulders, neck, and head. The central nervous system then sends a pain signal to indicate that something is wrong in that area.•
How do I know that it’s coat hanger pain? There may be other causes of upper back and neck tightness, but coat hanger pain will feel widespread across the whole region, as apposed to concentrated knots.•
How do I get rid of coat hanger pain? The best options are to either lay down to allow blood to resettle into the shoulders, or exercise as activity will also cause blood to shift. Ice or heat may also help. If you cannot lay down or exercise at the moment, pump your legs back and forth if you are standing or kick your feet if you are sitting.•
Do you have coat hanger pain? Did you know before this post that it was a symptom of dysautonomia?!
admittedly, I’m beginning to feel discouraged. today we went downstairs- my mom, grandma, stepdad, & brother. there was a whole table full of beautiful fruit. melons & berries, all sorts of variety. I wanted that food so badly. last night after drinking 4 oz of juice, my belly at least doubled in size, & it was so painful.
I am sad, & I didn’t realize how isolating & depressing not being able to eat is. this most basic body function, my body cannot figure out. the doctor says that the muscles in my stomach aren’t communicating with nerves, which means that they aren’t moving food along like they should be. my family is getting me hard candy to suck on as we speak. when I read online that Werthers candy has milk in it, my eyes teared up. nothing about this is easy.
we are going to drive to Mayo with TPN (assuming I don’t decline dramatically in the next 2 days). then I’ll come back to the hospital here, but most likely downtown with the motility specialists.
my family is here & im thankful & so happy about that. child life brought me therapy putty. my PICC placement went super well. things are still bright, but it’s hard navigating this when you feel so horrible.
hugely infiltrated arm from previous IV ✔️
yep, my right arm is not that huge usually. it’s just swollen. i look like I have good muscles, but it’s a lie.
When I say I’m getting SI joint injections this is what I’m referring to- OUCH 😷Towards the middle is where the needles go in. The end of the needles, closer to my hip bones, with some darkish fluid surrounding is the steroids washing over the joints. They first numb the area with lidocaine. Which is not very effective on me as #EhlersDanlosSyndrome
makes my body resistant to most local anesthetics. Then they insert needles directly into the SI joints. They leave them there and attach a different medicine to the syringe. A lidocaine and corticosteroid combination bathes the area and feels likes crazy pressure deep in your back where the needles are. It took several injections for my body to accept the steroids and now it brings relief for about 2-3 months and then we start all over! This has helped me overcome the non-stop sciatic nerve pain I was having from an SI joint injury. In a person with typical joints and connective tissue this type of injury would heal but my joint hyper-mobility pokes it’s head up again like the most annoying of all whack-a-moles 😆and prevents this from happening. Physical therapy with @legacyhq_
has been huge to strengthen the muscles around my joints and provide much needed stability 🙌This is just one of the appointments that are a part of my regular routine 😅
I’m having a really tough time right now, and could use your thoughts and prayers. I often get asked why I keep fighting, with everything I’ve been through. You all are a big part of that, and I’m so thankful to have all of you in my life. 💜 I do the work I do with the hope that those who come after me won’t have to go through quite the same amount of crap I have. Fighting for our rights and all of you are the sparks that keep me going. I love you all so much!!! Happy spring! 🌸💐🌷🌹#freeourpeople #adaptandresist
Today has been a bit exhausting! I had to get an EMG (nerve conduction test) done, because of some difficulty I’ e been having with my hands. There was a lot of shocking involved, including a needle to stick in my nerves and shock them directly. It was painful- and still is. But I got through it!
Since then I Overwatch released their new hero, Brigitte!! I’m so excited, and am absolutely loving her so far, she a well-rounded player and well, she’s obviously adorable, too. 😋 (Random pics are the red river, we cross it to the dr’s, and one of the rings I wore today)
#overwatch #brigitte #gamergirl #gamer #spoonielife #spooniestrong #fibromyalgia #ehlersdanlossyndrome #gastroparesis #mastcellactivationsyndrome #mcas
how cool are these socks?? i’m an actual sock addict & it’s only fitting that they have medical stuff on them.
I’ve now had 5 IVs in the past 3ish days, because TPN burns through my veins. it’s really painful in all honesty.
last night my 4th IV infiltrated & the doctors made the call that I would be getting a PICC line, since it looks like I’ll be on TPN for a while still. the nurses are advising us to push for keeping it in, since I have weekly infusions. the biggest reason would be that it’s fast & easy access for when I am in anaphylaxis, so emergency meds can be administered faster. last time I was at my local ER for MCAS, they poked me 8 times & never even got a vein. they ended up shooting the IV benadryl into my muscle & letting it infiltrate. so painful!
my belly continues to distend & get hard when I put anything in it. the GI doctor mentioned a few different things, including pseudo obstruction. there is stress. there is a good chance that we will be leaving this hospital with TPN nutrition to go to Minnesota, & then being readmitted after getting back to Texas. looks like I’ll be getting the PICC put in tomorrow morning. the doctor also said that I can try a bite of food tomorrow, even though we know that my body isn’t tolerating it. maybe I’ll reply on TPN for now but get to enjoy tiny bites of food, even if they’re painful. i am craving some of that normalcy.
My package just came in and I’m excited to try this! #dnrs
is a program of exercises to support healing. As people experience trauma (physical and emotional), our bodies/mind get wired for illness. This program works on the limbic system (trauma center) to re-wire for healing. Curious?? Check out the book Wired for Healing. (I got mine on amazon kindle) This system has shown to benefit people with a wide array of conditions: #fibromyalgia #potssyndrome #moldsensitivity #mastcellactivationsyndrome #anxiety #chronicpain #lymedisease #insomnia
and more. I’ll keep posted on how it goes!
S P R I N G ✨🌱 the turning of seasons takes on a whole new meaning when you're tuned into the cycles of your own bod. Really embracing these magnificent changes in my environment but also the tweaks and churns in the depths of my soul. Thrilled to be turning my own new leaf as we enter a brand new Spring. It will serve as a major milestone for me, and quite literally, I am all about feeling that Spring today 👒 #spring #healingjourney #marchequinox #springtime #healingvibes
x-ray comparison!! the first photo is my x-ray a week ago. you can see poop & gas.
the next image was my x-ray yesterday, almost a week later. my intestines, colon, stomach are all HUGE- dilated, and likely filled with fluid. this explains the distention.
I am pooping, but very little. here’s the weird thing, though; I’m pooping out my medicine that I’m taking by mouth. there are also 6 pills in my second x-ray, which tells us that I’m not fully absorbing what I’m taking! and, because of how slow my belly is moving, we don’t know when those pills are from. likely at least 4 or 5 days ago.
there’s a high chance that I may be transferred to the downtown campus, where there’s a motility team. they are considering this a crisis situation now because of how long it’s gone on & how little progress we’ve made. just trusting that no matter what, God is in charge.