In honor of me getting out of the hospital two days ago I’m here to say fuck kidney disease. This is a photo from my last PET scan, Im absolutely exhausted from being sick all the time, so if you get mad at me for not replying or not posting now you know why. Being sick has changed my perspective on life a whole lot, and you have to enjoy the little things ❤️ I love each n every single one of you, your dumb comments and your dms of memes and pictures of your dogs and cats literally put a smile on my face some days. Between being in pain all the time and my veins blowing and the hospital visits, I really wanna sleep for 6 years though 😂😂 #kidneydisease#pkd#chronicillness
Our kids’ weekend in Raleigh was a success (for the most part)! We rented a VRBO downtown, went to Pullen Park and Marbles Children’s Museum, and ate out for every meal!!!
Like most families we had to plan around naps, snacks, and meals. Unlike most families we had to navigate our son’s fructose intolerance and my diabetes. One hidden ingredient is the difference between a settled or unsettled stomach for him and a good or bad blood glucose for me.
We were both diagnosed this summer and were finally ready to take on the challenge of eating out at restaurants. We kept it simple, sticking with whole foods with very few ingredients, and asked lots of questions! Our servers were happy to share ingredients and make modifications when possible. We only had one misstep in our ordering that caused a minor tummy ache Friday evening, but aside from that our son had a happy belly and big smile the entire weekend!!!🤗
As for me, the first day went off without a hitch! My BG dropped to 85 at Pullen Park from walking around, but it was an easy fix. When our children ate a snack, I just ordered myself a coffee and had some cashews. Dinner went well too. But I over bolused a little and had to eat a hypo treat later, which was fine by me!🍫 On Saturday, we stuck with a normal breakfast and didn’t indulge in something that would spike my BG. After about an hour of wandering around Marbles my BG was 85, so I grabbed a trusty dark chocolate honey mint before heading into the IMAX documentary. It took a while to kick in and I got a little nervous (I should have put an extra low treat in my pocket!), but thankfully my BG went up to a happy 115. My son and I explored more exhibits, then met my husband and daughter for lunch. My lunch bolus was spot on and we closed out our Marbles day without incident!
Our only hiccup came after the kids were asleep Saturday. A fun surprise dinner for my son turned into a scary evening for my husband and me. (I’ll share more in my next post.) But, even with Saturday night’s events, our adventure was an overall success and I’m proud of us for diving into my 2019 goals headfirst!
Have you begun working on your new year’s resolutions?
1 34 minutes ago
Not the kind of update I like to give, but here it is.
Yesterday was awful and I was in terrible pain pretty much the whole day.
Around 6:00 my parents took me to the ER because the pin was that bad and shortness of breath and all that. And I had been crying for about 4 hours at that point and my mom had to carry me to move me because it hurt so much to move.
So we got there and did all the checking in and everything as I continued to cry and moan.
Eventually I was given Prednisone, Norco, and Zofran. Which did absolutely nothing so I continued on crying and moaning until 12 (sorry to all the people in the waiting room - I was quite loud) when it was decided that was not enough and we needed something more and more imaging ran. (Earlier there were chest X-rays to make sure the shortness of breath wasn’t something “bad”). So around 12 morphine and a CT were done. Which brought the pain down a little but. Bit later moaning an crying perused.
Somehow the ER ran out of morphine last night in all 3 med locations (after I saw them restock twice) so then Percocet was given which made me comfortable enough to be quite and and actually able to answer questions and not just cry.
Good news is I am home (on Percocet, but still at home) and we see my pediatrician tomorrow to see what she says about what is happening.
Last night they determined it was likely Costrocondritis causing the shortness of breath and chest pain but we have no answers for the abdominal pain and other pain (armpits and hip/groin). PS having the neck collar on automatically makes everyone assume that I am there for neck pain and gets a lot of questioning. CT tech didn’t know what to do so had to go get bother person.
PPS looking young/being young in an adult emergency room (where the average age is 70ish) has its bright sides.
In the back where they do IVs no visitors are allowed but apparently I “looked scared” so they called up front and got my mom.
PPSS I kept hearing people talking to my mom and saying I was so cute. I don’t see how they could think that with the way I was feeling and I was dripping in sweat from the pain (not cute at all)
✨Do what lights you up! Adding JOY, FUN and things that make you 🌟Sparkle🌟 makes you feel good. If you feel good managing matters is all the more achievable🥝
Today I did a Yin Yoga which embraced the Leo Full moon. It was a new experience for me but one I enjoyed, gentle movement and mindfulness with rest was just what the body needed to help manifest the month ahead.
My health is always better when I move, sometimes that’s a lot, sometimes that’s a little.
Mindful movement. Move the body, still the mind 🙌🏻🧘🏼♀️🤸🏼♀️💗 #ibs#mindfulmovement#movethebodystillthemind#chronichealth
1 16 minutes ago
Update• So my son ended up getting a tonsillectomy the easier way to biopsy his Lymph Nodes that are in above normal range• Official status is not in yet but so far it’s testing negative for PTLD• PTLD,CMV,EBV like to hide• They opted for tonsil biopsy because it’s easier to get too• If it comes back normal it still doesn’t explain his abdominal pain he has had for ongoing of 7 weeks• Leaving Drs to evaluate if they need to go in through his abdominal area to sample tissue to confirm his pain• We are now in day 6 of our hospital stay 🏥• After Tonsillectomy he started getting high fevers• Today we’ve only had 2 fevers that we were able to control• Previous to that his fevers were back to back and very high• We have had MRE,CT Scan,Endoscopy,X-rays,Ultrasounds,EKGS,Numerous blood draws,Cultures,5 IV Lines,Uncountable blood draws,Most recently a Blood transfusion,IVIG,and a cocktail of Antibiotics in the matter of 3 weeks• In the moments that there is no chaos going on in the hospital room I spend my day catering to my little guys needs• On the floor you are mommy nurse• You watch his HR,O2, Keep a eye on all his intake of water & food, Advocate for him about pokes and procedures, Watch his IV to make sure it’s not swelling, Help him bath, Eat, Move around, Become his main entertainer, Make sure he’s getting all meds, Acknowledging his fears & pain, Wiping Tears• Make sure he gets things he wants to eat for his tray• Needless to say the day goes by because I busy myself with all his needs• We have had a lot of sleepless nights• I doze off to catch up when I can😴• He looks great today• When you get admitted it’s like living in a 🐠 fishbowl• I miss feeling the weather outside• It’s Monday how’s the weather?❄️🌈☀️🌧Hoping for results soon•
1 77 minutes ago
The negative voice in your head will never lead you to greatness. ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀
We all have one. ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀
The voice that's tells us we can't. ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀
We're not good enough. ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀
Not clever enough. ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀
Not strong enough. ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀
• ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀
Naturally we push it away. We silence it. We look in the other direction. ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀
• ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀
Now I want you to imagine that voice as a child. Afraid. Lost. Overwhelmed. ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀
Would you silence them? Push them away? Look in the other direction? ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀
No! You would pull them close. Comfort them. You would treat them with patience and love. ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀
• ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀
Your negative self talk is the lost scared child in you. ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀
It's priority is comfort, safety, survival. ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀
But surviving isn't thriving. ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀
Like a child this voice deserves to be heard. It may lead you to answers you need. ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀
Like a child it deserves to be met with love & compassion. ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀
But you wouldn't expect a child to make important decisions for you. ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀
• ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀
Face the noise. Look it in the eye. Then let it go. You are not a scared child now.
You are stardust. Go and shine ✨
THE REAL REASON YOU AREN’T LOSING WEIGHT
You workout, track your food, and eat 1200 calories a day…
You focus on protein and eat 1g of protein per lb of bodyweight…but you STILL aren’t seeing results. //
GIRL! Protein doesn’t = weight loss. You can count macros all day long but the quality of your food matters 120% MORE than the amount of protein you’re getting. Too much protein can cause inflammation. ESPECIALLY if the protein isn’t grass-fed, hormone-free.
Here’s the thing about macros…they can be a great tool *IF* you are filling your macros with QUALITY ingredients. //
9/10 though…that’s not the case. You fill your macros with soybean oils, sunflower and safflower oils, corn, canola oils, flour, gluten/wheat, dairy. And you forget to have your fruits and veggies, vitamins and minerals that are ESSENTIAL to hormone regulation.
The real reason you aren't losing weight is because you are failing to fuel your body with quality ingredients!
Do you look at the ingredients on food labels or just buy something based off of what the package looks like? Comment below and fill me in!
It’s my birthday and all I want is a thousand page likes and a pair of Dior sneakers. If you like making birthday dreams come true and you know someone with MS who’d appreciate this blog - or you have $700 you don’t care about - you know what to do.
visited St. Jude today with my sorority. It is such a magical place, which is a weird thing to say about a hospital, but the environment is incredible. St. Jude knows exactly what a sick kid wants and needs from their hospital and it makes such a huge difference. I’m so happy and proud to fundraise for them!
💥💥💥 BOOK REVIEW 💥💥💥
Kudos to Adam Schreiner for writing a great book covering Diabetes and Meditation. I devoured it quickly with its easy flow and witty (sometimes salty) words. He speaks from his heart, so a bit of the language may be offensive to some. However, I’m on a pretty non-cussing end of the spectrum and it did not bother me. Adam’s wit puts names to many of the characters we all know and encounter every day. It made me ask the question, am I a Bragabetic? And I know at times I have been a Deniabetic. -
In addition to sharing his story, He walks through the basics of meditation and has written transcripts for guided meditations that are available in audio online. -
I am thankful for the beginning training in meditation and really saw results from using some of his methods. It literally changed my mindset as I was struggling with lingering medical limitations and stressful meetings. -
I recommend the book for those looking for more autobiographical and light hearted writing. I also recommend it for anyone trying to learn more about meditation, even if you don’t think it will work for you. -
You can also catch Adam and his friend Jeff on The Prick Podcast. It’s a case of chaotic comedy laced with facts and edible nuggets of info for anyone and diabetics. -
Searching for peace tip #1.
Instead of asking God, "WHY?" (Why me, why this, why now,....etc)
Ask God, "What now?" And, "How shall I respond?" And, "How can I use this to glorify You?" After 8 months of dealing with chronic illness that has changed my life I have learned this... asking God the, WHY?, questions did nothing for me... it didn't help me, it didn't move me forward in any way. It didn't bring me peace and even if the question of, why me? why this? were to be answered, it would have not changed my situation.
However, when we ask God, how? ....He will make a way... He will show us how and He will walk beside us as we fight the battle we face, He will fight for US!! Once we realize this and face our burdens, sufferings, struggles and challanges with asking God "How", with time we will then see the answers to our, why me? And, why this?, questions! Because when the dust clears...God will reveal this to us by showing us the many blessings that come from the hard times, if we follow Him and Trust Him.
*old pics from the last year*
Honestly struggling to believe some peoples conceptions on the disabled/chronically ill. No we don’t sit on our arses all day for the fun of it. I’ve committed most days since the beginning of 2017, I’ve collapsed several times a day since the end of 2016, I’ve had so many hospital admissions that I’ve collapsed every single vein in my body. It’s about physically forcing yourself to get up in the morning even though it’s the same hell you’ve lived for the last few years. It’s MENTALLY draining, to the point you have to see a psychologist specialist in chronic illness management. It’s having multiple hospital every week, the same appointments you know only being disappointment because none of your conditions have a cure. Its speaking to mindless people (funnily enough, including some GP’s’) who still think all your conditions will be cured in a month and it’s having to prove to people how ill you are because the majority say ‘well you look fine’. Same bullshit, different day. I would trade absolutely ANYTHING to be healthy again, even just for a day. Rant over. #chronicillness#type1diabetes#gastro#tubefed#NJtube#chronicallyill
One of the most grace-filled scriptures.
This quote by King David is such a reminder of who God is and how He treats us. What attribute of God does David say made him great? Not His power, nor His discipline. God’s gentleness made David great. Think upon that, as you go about your day ❤️
@hopewriters writing prompt challenge day 8
#HealthUpdate - Chiropractic Care
As most of you know from last months post, I started seeing a Chiropractor to help fix certain problem areas in my upper and lower spine, as well as my tight leg hamstrings. When I first started care we did a nerve scan (top image) and my spine was all out of whack. The green is the most mild problems, blue is moderate problems, red is severe problems, and black is "off the charts" bad. .
The image in the bottom shows my nerve scan today. As you can see my spine is looking a lot better. I have noticed a huge improvement in my neck and I also have had barely any head aches since starting treatment (and I use to get a few a week). .
I am feeling really optimistic about the treatment so far. Although it is a lot of work, I think that the care is worth the time sacrifice. For the first month I was going 3 times a week to the chiro and was given exercises to do every other day. For the next month, I will be going 2 times a week and after that I will go once a week for about 6 weeks until the issues are resolved. .
If you want to know more about my original issues and the possible connection between spinal nerves and #IBD check out my last post on chiropractic care from mid-Decemeber. .
Resellers, ya feel me? 😕
This wasn’t on my planner of things to do today.....
I planned on going to work, seeing patients & then head home to photo, list and share....to continue to build my business & brand.
Instead, I’m home seeing double with extreme muscle weakness & fatigue. It definitely equates to feeling like a busted can of biscuits.
I am tired of feeling tired.
Of having to rest my eyes, wearing an eye patch to functionally see.
I am tired of my bed, as it’s no longer a comfort.
Tired of feeling unsteady & dizzy from having to increase my harsh medications, the side affects that come with it & seeing double.
Tired of my muscles feeling like weighted jello.
Of being stuck inside my house, unable to drive.
Living with an autoimmune disease is like having a silent stalker inside you, just waiting to pounce.
It’s a thief. A stealer of plans & expectations, throwing a wrench into whatever you wanted to accomplish for the day.
Right now stressors are many, & with this disease you can’t control when it hits, you just know it eventually will. Frustrating so.
A rare neurological autoimmune disorder.
My humble reminder I am indeed human, indeed fragile at times but always a force to be reckoned with. ALWAYS. Nothing will ever take away the light that lives inside me, even amongst the darkest of silent stalkers.
MY PERSEVERANCE & DRIVE.
Mantra: I am strong. This too shall pass.
I am strong. This too shall pass. 🙏🏻
Tomorrow is a new day & my inventory will always be there to welcome me back. 👠 👗 👚 👖
Until then, I rest.
I know I’m not alone in this feeling & to all of us resellers who suffer from ailments which leave us unable to check off our to do list, learn to listen to your body & simply rest,
not quit. We got this. 💪🏼 We are no biscuits.
For the past several weeks, many of the patients under our care had a feeding tube or were getting one placed during their hospitalization. Initially, I kept quiet about my own feeding tube not sure how much I can really share with patients while caring for them, even though many looked in curiosity. But as I saw fear, frustration and stress in many of these patients and their families I started telling them while lifting my tubes, “I also have a feeding tube”. Their reply was usually a smile, with a sense of relief and, “You understand how we feel”.
After we’d round I’d visit with these families for as long as they needed. Answering their questions, educating them on what is normal/abnormal, telling them how it is going to feel, sharing tips and tricks I and many others use, how to carry all their supplies when they go somewhere, what they will need and then at the end they would thank me for taking my time with them while telling me they are grateful to be cared for by "a doctor" who also has a feeding tube and understands.
Having a feeding tube is life changing, but I always say we can look at our feeding tubes in two ways, either as a burden (I am at times guilty of this) or we can look at it as a gift (when pertinent). There are so many people who are being kept alive by feeding tubes, myself included. If you were to remove it we wouldn’t survive.
When my surgeon went in, he found my entire stomach was stuck together. To even do the surgery he had to literally tear apart my stomach. Although now I can eat some food, it still doesn’t digest. My stomach is only working at 4%, it’s basically paralyzed. I have two feeding tubes, one goes into my small intestine which is where I receive my feedings and the other goes directly into my stomach which is where I use a syringe to pull out the food I do eat for pleasure that is just sitting in my stomach bc it doesn’t digest.
While I continue to be hooked to my lifeline I consider myself blessed to be in a position where I can help with, both, my patient and provider perspective. We all have unique gifts. I’ve been given an amazing opportunity to make a difference and I hope I’m doing it justice.
One of my all time fave instagrammers @wheelchair_rapunzel recently started a hashtag #DisabledBodiesMatter (and t-shirt) and I am HERE FOR IT! 🥳
The body positive movement is such a good thing for a lot of people. It’s teaching us to embrace who we are, rather than constantly striving for the “perfection” that the media lies to us about. But what isn’t so great about the body positive movement is that they often lack disability representation.
I’m tired of watching BP commercials filled with different body shapes and colors but not wheelchair users, no feeding tubes, ostomies, or ports; NO DISABLED PEOPLE. Why? We deserve to love our bodies just as much as everybody else. Our bodies don’t need to be hidden away; we deserve our moments of representation too.
So here is me and my body. Coexisting regardless of all the scars, aids, or “weird” things my body is attached to. I love me. My body matters. Now let’s make sure the world knows that too.
If you're struggling with an invisible illness, you may hear the phrases, "You don't look sick," or, "You look fine." That's why we wanted the share this message from @thegrumblinggut — because not every illness is visible and your words matter.
He says: "'You don't look sick to me,' and, 'You look fine to me,' are two of the most common phrases I hear when I tell people I have crohn's disease.
Well that's the point of having an invisible illness. You can't see it. Just because I don't look sick doesn't mean I don't go through daily struggles that affect my life. No matter where I go, whether it's to work or out with friends I'm always aware of where the nearest toilets are.
Just because someone doesn't look physically ill, just bear in mind that they could be struggling with something you can't see."