My nephew loves his Melissa so much, he snuck out the front door and into the van when we were trying to leave grandma’s. He kept telling me “Bye” and wanted the seatbelt on. It broke my heart when he cried “NO” as I carried him to grandma. I sure hope he’s not too mad at me. #princessmelissa #cousins
I just got home from my second tube change within the span of a week! During every tube change, I go back with a list of “no’s” to reduce the risk of #mastcelldisease
reactions. It helps make the process a little easier. Thankfully I am always awake to advocate for myself, as I experience disease complications from anesthesia, but communication is so so important regardless. You would be surprised at how many medical professionals overlook these things simply because they are used to following their usual routine. Sometimes it takes the reminder of a complicated patient for them to slow down and truly listen. 😊
Hey all so this is my chronic illness account. I have a genetic condition called ehlers danlos syndrome which has also caused me gastroparesis, hence the feeding tube. This account will bring you on my journey of battling both the physical and mental aspects of this illness.
#ehlersdanlossyndrome #eds #chronic #illness #ng #feedingtube
Have you? Tag two people you want to say “love you” to! 💛 📷: @patagonia
One benefit of having a GJ tube....not having to swallow this yellow paint #mepron
starting up babesia treatment and it's already rough 😓this could be what's causing my anemia though because the babesia parasite infects the red blood cell and can destroy it #themoreyouknow
we tried to treat babesia with a supplement called artemisinin but it didn't do the job so time to bring out the big guns
If you haven't met our Vice President, Jeanette, allow us to do the honors! Jeanette met Rebekah while she, along with Will, were visiting families in the hospital with new babies who had various medical diagnoses. Jeanette was feeling overwhelmed with her daughter Faith's unexpected medical needs and saddened that people were nervous to hold her because her NG feeding tube was hanging from her cheek. Jeanette was also passionate to help other families who felt the same anxiety that she had felt bringing Faith home with a feeding tube.
After becoming fast friends, Jeanette & Rebekah started to talk business, and the rest is history! Jeanette has brought some awesome new product ideas to the Tubie Pockets brand, as well as a knack for business. Today, Jeanette & Rebekah are working to grow the Tubie Pockets brand as a means to provide long-term for William and Faith, both of whom are home, healthy and doing well with their G tubes!
Well, I love drawing. I don't draw a lot the last month because I havn't time but the here in hospital time is endless. I still have the feeding tube but I have some good news too. Because this is an normal hospital they can't really help me in here. Thats why they want to dismiss me next week. Thats good because then the feeding tube will be out of me. I think I am Lucky that I am not hospitalized into a 'real' clinic, there I might have the feeding tube some weeks longer😖 My therapist is really nice, he visit me twice a week and since I am here in hospital we advance in therapy. Only three days ago we talked about a very important theme which was really hard for me but also good because after that I felt so effortlessely. We made a plan: For now I don't get nutriment through the feeding tube as a test if I could eat and if they can let me home. Eating something is easier without the background thought that I get lots of calories through the tube too. But eating is also hard because I gained a lot through the tube and I am scared of gaining way more weight through normal food. So I give my best because after 3 weeks I want to be home again. And I want to proove that I can be stronger than anorexia. I hope I will get it.😖
8 months ago i stepped into this lift not knowing i was entering HELL... my surgery day in red. Today im stepping out the lift ALIVE, more alive than i have ever felt.
Took me 6 months but eventually i fucked shit up and left 🖕🏻✌🏻❤️ #vsg #vsgbullshit #vsgisshit #dontdoit #hell #feedingtube
Food Fest... Everyone is invited...😘😄
Continuing the process of becoming an android by developing an exoskeleton 😂
Got fitted for and picked up my knee and neck braces today! Really hoping this helps... and doesn't make the problem any worse 🤞
If anyone is interested, the orthotics guy was very nice and helpful and the place is really cool, they create most of their braces and prostheses on site. Here are some pictures of them making a mold to use to create a custom brace. They use that old Singer sewing machine every day, too. It's a family owned business in Southie called Rogerson Orthotics and Prosthetics, for my Boston friends!
Today I had surgery to have a port placed in my chest. My port will allow me to receive IV fluids at home so I don’t have to be in the hospital. It will also allow me to receive TPN in the future for nutrition if my GJ feeding tube doesn’t give me the nutrition I need. Unfortunately during surgery I had a pretty big tonic clonic seizure that gave everyone a scare in the OR, but thankfully they were able to stabilize me.
These past couple of months have been extremely difficult. My health is not doing well. As my doctor put it you’ve been fighting to survive each day. My days have been filled with doctor after doctor. Each finding new problems that need to be addressed. New problems with my heart, nervous system, GI system etc. I need you to see this doctor and that doctor and we need to do this test and that test. We can do this surgery and try these other surgeries in the future when your nutrition is more stable.
My doctors look at me and then look down in defeat, “You have been through so much. I don’t know how your body has survived. I just wish I could lessen your burden. Give you a life you deserve”.
I see and feel my body deteriorating, but to accept several more years of living in and out of the hospital, when prolonging my life is not guaranteed, I can not do.
I will be the medical student that is tube fed and is connected to an IV pulling around a suitcase full of feedings, bags of fluids and supplies while seeing patients, I will be the medical student who has to possibly use a wheelchair and I will be the medical student who has limited functioning in her hands, but I am ok with that bc to enjoy, even though difficult, what I’ve worked so hard to do is all I want.
God has been so good to me. Even though some may not see my journey as a blessing, to me it has been. My dream is still alive and to be present now is enough and if it’s God’s will I’ll be present to treat my future patients.
When your rx bag is as big as you are 😅
●LARGE CAPTION ALERT!● So as promised, I'm going to write about my entire health journey so far.
So in the summer of 2015, I began to notice pain in my stomach whenever I ate red sauce. the pain began to get worse and worse as time went on. my family initially thought i had ulcers, which proved to be true in the years to come, but I knew something more was happening. we scheduled an appointment with a GI doctor and eventually I got my first colonoscopy and endoscopy done. at first, the diagnoses was Acid Reflux, which isn't wrong. about a week later, we got a call from the doctor telling us that I had Crohns. that wasn't really right. they put me on medication but it was not helping at all. I dropped from 110 pounds to 90 in about 2 months or so. I was still in large amounts of pain. so in the very beginning of 2016, I had my first mobility test done. it showed that I had mild gastroparesis. my first treatment for my disease was botox in the stomach. it worked for awhile, but it stopped working eventually. I did try medication, but none of them really worked well either. I basically went untreated until the August of 2017. so fast forward to the school year of 2016, and I began to have horrible body pain to the point where I had to be completely homebound for school. I went to 4 Rheumatologists until I finally got the diagnoses of hEDS and fibromyalgia. so far, it has gone untreated since then. doctors refuse to treat me. so let's fast forward again to August of 2017. by this time, my gastroparesis was getting worse. we did another mobility test and I was at 600 minutes, or 10 hours. so it was decided that I would get a nasal feeding tube. the feeds did me well. I started walking again, and I was gaining weight and energy. the problem was that my NJ tube kept falling out every 30 days. even after the doctor stitched it in place. my stomach was shoving the tube out of my intestines. so we decided that a surgically placed J tube was the best option for me. so on October 31st, I received my first J tube. I've had it ever since then. my chronic pain is still untreated to this day, but I now go to the chiropractor and I'm starting physical therapy very soon.
This is what I'm getting soon when they replace my PEG feeding tube! I cant wait to not have a dangling tube hanging out of my stomach (I tuck it into my pants). It's gonna be so much better!
#PEG #pegfed #Mickey #feedingtube
All of this color coordination is making us happy, indeed! (📸: @petitbambu
Six batches of #blenderizeddiets
made for a very special senior ... chia gel, cream of celery, sweet potato delight, curried squash, creamy asparagus, cream of broccoli, and cucumber cilantro. All custom-made, vegan and GFCF but can be made paleo or keto as well. Tasty and nourishing by mouth and #feedingtube
. Contact me for recipes or ready-made blends.
3 years ago i did not understand many situations that were thrown at us, 9 months in @seattlechildrens
not just saved his life, changed mine. I used to wake up and say just today Miriam, you can do this, #onedayatatime
if he #keepsfighting
you do it too, his smile always brightens the darkest days, I give thanks every single day God let me be his mom, fight by his side, watching him grow. Whatever situation you are going thru, hang in there IT WILL GET BETTER, IT SHOULD PASS, LIVE THE JOURNEY, TRUST HIS MEANS, BLESSINGS COME DISGUISED SO YOU CAN APPRECIATE THE LITTLE THINGS you can breathe, you are not hooked to an oxygen tank, monitors, feeding pumps! be good, make every day count!! #godisgood #blessed #preemiemom #fightlikeapreemie #keepfighting #oxygen #mindset #youcandoit #specialneeds #smile #feedingtube