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✨🍄Kiki Dunne🦋🧂

@thepinkpotsie

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❤️‍🩹Learning how to truly live and not just survive✨
💜Power Port & GJ Tube⚕️
👩🏻‍🦽‍➡️Wheelchair user & Service dog handler🦮
🌷You are loved, let’s be friends!🍄

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And then he was 3 🩷🎂 by @thepinkpotsie

Miss girl is 8 today! Officially a senior 👵 by @thepinkpotsie

Random parking lot photoshoot with your favorite pink duo 🩷
(Swipe to the end for a funny pic)

📸 @atypeonestory

Tags:
#wheelchairuser #servicedog #goldenretriever #chronicillness #ambulatorywheelchairuser by @thepinkpotsie

2 months ago I had the most painful experience I’ve ever had, my GJ tube placement. It has been a journey of mostly downs but there have been ups as well. I really appreciate my friends and found family during this time because it is extremely mentally taxing. I’m exhausted and barely able to write this but just keep trying. Keep going to those appointments, keep getting the surgeries, do what you need to do to be able to live as normal as possible. 🩷

Tags: #gjtube #tubie #chronicillnessawareness #servicedog #goldenretriever by @thepinkpotsie

Come on now 😒

Tags: #thecrash #mackenzieshirilla #pots #potssyndrome #chronicillnessawareness by @thepinkpotsie

Would you have guessed from this video that I’m a wheelchair user? Probably not! I have very limited energy and chronic pain because of my conditions, which makes it very hard to live a normal life and work a normal job. Now that I have my chair I have the ability to save my energy for what I love doing which is working with dogs!! Ambulatory wheelchair users exist and we are valid.

Tags: #wheelchairuser #chronicillness #servicedogssavelives #dogtraining #pots by @thepinkpotsie

Hi! Thanks for reading :)

I have strange motility function probably due to my pots which has symptoms that make my life very difficult including:

* Early satiety (Feeling full after a bite or two)
* immediate fatigue after eating
* Constant stabbing/cramping pain that worsens when l eat
* A feeling of being full of air and needing to burp but I can’t
* Having very intense nausea and vomiting spells that lead to syncope episodes, intense temperature changes and seizures
* + So much more

Because of this, consuming water and most other foods and drinks makes it so I can’t work or really leave the house at all. My solution up until now was to just eat as much as I could stomach before bed so that I could fall asleep before feeling the pain and then be semi ready for the next day. Before this placement I’ve been running 2L of saline through my chest port every night to aid with my sodium requirement and hydration. Unfortunately this is not helping me, this is just keeping me alive. After months of trying to avoid it I couldn’t do it anymore. I’m malnourished, vitamin deficient, starving, in pain, I’m so limited in what I can eat and when I can do other things because my fatigue is so debilitating.

I just got out of the hospital, my surgery was on Friday 4/24. I’m in so much pain but I’m relieved that the worst part is over. I’m really hoping that this will give me some more freedom because living in a body that is always starving is not a way to live. Having to force feed yourself in one meal just to get enough calories for the day is not fun. This is really hard and I’m not sugar coating it because I don’t have to. I’m excited to see what the future holds, but for now I’m just staying grateful that there is medicine that can help me feel even just a little better, and that I have my people to help me through this journey. Thank you,
- Kiki 🩷

Tags: #gjtube #chronicillness #pots #chronicillnessawareness #servicedogs by @thepinkpotsie

Traveling to the city to do some prep stuff for my surgery on Friday! I’m getting a Gastrojejunal “GJ” tube placed to hopefully improve my quality of life through feeds! I’m currently very malnourished and my fatigue is unbearable so after trying many medications I’ve decided it was time to get a tube like my care team has been suggesting. Wish me luck!

#gjtubesurgery #hospitaltrip #chronicillnessawareness #functionaldyspepsia #disabled by @thepinkpotsie

Introducing Teeny, my custom power chair!
If you know me at all you’ll know it’s been absolutely infuriating trying to work with insurance to get my chair. Finally after over a year of trying she’s here. I’m so happy to have a chair that is fit for me. It dissembles into a couple pieces so it’s easier to transport, the seat is more narrow so I can fit in tighter spaces. The charge lasts so much longer, it’s faster, and best of all SHE HAS NO MORTIFYING BEEPING NOISE WHEN BACKING UP 🎉🎉🎉

Don’t worry she’ll be pink soon ;)

Tags:
#disabled #pots #chronicillnessawareness #dysautonomia #disability by @thepinkpotsie

Little life update and cute team pics!

But first, I’m going to start saying what I’m grateful for not only to embody the fall spirit but to show myself on hard days that this life is still worth something.

🍂🙏I am grateful that I have the ability to drive still, and see my friends sometimes when I’m feeling well enough. I’m grateful that I can still work even if it’s not in the traditional sense. I’m grateful that I have an amazing support circle with people I can truly rely on for anything. I’m grateful that I lived long enough to meet my soulmate and feel genuine love and happiness in a way I’ve never felt before. This is what is keeping me going these days. And lastly, I’m grateful that I have two amazing beings that I have the privilege to call my own that keep me safe every day and help me keep going when I feel like I can’t. @servicebutterflies
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Health Update:

I’ve been stuck in a severe fatigue flare for what feels like months but specifically these last 2 weeks have been really debilitating. I’m struggling to get out of bed. I can’t hike with the dogs, I can’t work on my fish tanks or engage in my other hobbies. Thankfully as I’m writing this I’m feeling a little better fatigue wise and I’m getting iron infusions soon and that should help with the fatigue as well as correcting my severe anemia.
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GI issues are pretty baseline for me but i have been having more intense pain eating foods that used to be safe. My GI doctor took over my fluids prescription and we are trying different meds to alleviate my pain and other symptoms.
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Neuro wise my migraines are pretty much controlled with my monthly injections but when one does start, my emergency med stops the intensity or the whole thing stops 75% of the time. Seizures are still happening but meds have made them much more infrequent and when they do happen they are much shorter.
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Good news: I have some important appointments coming up and I’m trying new medications that will hopefully give us some answers and help. Maybe I’ll start posting more, maybe not. For now, send spoons because your girl needs them 🥄🥺🙏

📸 @amelia.rehrman by @thepinkpotsie

Super fun surprise date to the aquarium! This was Keebo’s absolute dream because if you know him at all you know he is obsessed with fish 🐟😹 by @thepinkpotsie

My most recent test was a breath test, and we found out I have small intestine bacterial overgrowth. Starting antibiotics and probiotics for 4 weeks, wish me luck. This test involved me breathing into a bag every 15 minutes for 3 hours 💀

I’m going to be so honest and say that chronic illness sucks and I’m so exhausted feeling like shit all the time. I hate that I miss work, I hate that some days I can’t get out of bed, I can’t eat without extreme pain or vomiting. I’m so fucking tired. by @thepinkpotsie