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Jasmine Sturr

@jasminethechemist

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Med-tech Chemist🧪 @lumacleancares
Life with Juvenile Onset Parkinsons + GI dysmotility
Creator of StomaEase!
🌈👭💍 @theappalachianangelino

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it has been a bit since I've updated and really that's because it has been slow progress. this is kind of the worst phase of needing major surgery-waiting. I will be sure to remember I said that when I'm actually recovering because I'm sure then I will feel like recovering is the worst part but I think waiting is the hardest.

there isn't really much I can do right now until I am off blood thinners. The unexpected twist of getting a blood clot in my arm from a medical mistake has been heavy. I will talk about that more soon since I have finally filled out the grievance against the doctor who did this to me. it is a crazy one.

but for now, I'm just managing. i have gained a few lbs and am doing well on TPN, but I am really struggling with being super allergic to adhesives. if anyone has tried something I have not I would love to hear it.

For now, it is just hanging in there until I can have my J tube revised. next week in my final planning talk with my surgeon we should get to make the final decisions! looking forward to getting back to my normal life. by @jasminethechemist

Hey everyone, here is a little update! I have been home for over a week now, TPN has made me start to feel like a human again which has been wonderful. I am slowly recovering from the tunnelled line procedure. I can move a lot better than I could before. Reaching over my head at this point is only part that is still difficult but I'm a little bit more comfortable everyday, and getting proper nutrition and hydration has been huge. Pretty soon, I know it will feel normal again and I am looking forward to it being fully healed.

I also turned 32, and Jenna and I went to see Jesse Welles in concert last night. We had these tickets for a long time and I saved up every little bit of energy to enjoy it. We got accessible tickets, and the wiltern seriously has incredible accommodations, we were so impressed. It was a great night and now I'm just recovering from that. It felt really good to do something normal.

As for when I'm going to get to have surgery to have my tube revised, likely December. It's been a bit frustrating having to slow down so much but I'm lucky that this actually came at a good time with my work for me to take the time to go through this and heal. Everything is coming together, and I feel like I am making progress.

This latest decline has luckily come at a great time for me professionally, I was able to finish my summer travels and right now my company is working hard to release my product, BarrierBalm, and at the same time I'm actually getting to experience it really helping me. The skin around my stoma has gotten ridiculously bad from the atrophy and leakage, and my own product has been the only thing helping. I am looking forward to it being available to others soon when we clear the last hold up with the FDA. But that is also something I will talk more about as the process moves along.

Right now I am working on taking it easy and getting a little better each day, and just trusting the process. Patience has just never been my strong suit 😂 by @jasminethechemist

thank you so much to everyone who left me a lovely comment. I look forward to writing back when I have brain power once again lol, had to have a boatload of benedryl for a ct scan yesterday for my december surgery, and I feel like my brain is still on 25% speed 😂. doing much better, I have a line and it was not a traumatic experience to get so that's cool. did find out just as I was typing this that I will be here until tomorrow because they have this crazy new policy of making you stay inpatient for the first 24 hours now that you start TPN even though I was on it for 8 years but hey, it will be a few months and it will let me not have to live with the pain that trying to tube feed through an atrophied stoma causes or force eat through pain to survive, which has been awful, so this is a great move forward in quality of life. And I got out of house chores so that kind of rocks, lol. taking this as a win! by @jasminethechemist

Okay I know this video starts out kind of concerning I want to say first of all I AM OKAY. Don't worry, I'm not having a mental breakdown or anything, I was just in physical pain that meds are keeping containedish at best. It has been a very rough past few months. I had been in denial for a while about how badly my #jtube Jtube stoma has deteriorated in the past year, but by July I could not handle the pain anymore. I'll explain later about what is actually wrong with my now 10yo stoma, but it is bad. Luckily, this summer I met the right people who helped me figure out what could be done surgically that will actually be a huge QOL improvement. As for now and the next few months, I am getting by until my surgery in December. I have slowed down a lot. If it was up to me, the surgery would have been last week, but a medical mistake (long story, will share after the hospital grievance is done, yeah it was that bad), I had to delay the surgery until I am off blood thinners (also had to stop vyalev too- I can't wait to start that up again in December). Tomorrow morning I am going to have a new PICC line put in and start #TPN , which I was on for most of my twenties and have been off of the past few years thanks to a new treatment called #motegrity that gave me a lot of GI motility back. Not enough to eat entirely by mouth, and I've accepted that there is not a reality where my body will be safe without a J tube, but with a good new tube, I can live well that way. TPN will help me gain the weight I've lost (15 lbs since july 😓) and allow me to only use the tube for meds which will be a nice change. TPN will also help me recovery from surgery without having to rely on my intestines which will be hugely helpful, it will let me let my intestines wake up on their own time. But yeah, more to come. For now, this is one of those low points that you have to go through to get better when your body is not really supposed to still be alive after two decades of #parkinsonsdisease but hey, I am stubborn and I plan on being around a lot longer, I am tired but I have a lot more left in me. (Continued in comments) by @jasminethechemist

Managed to accidentally upload this one to tiktok without a description, whoops.
But this is video number two in my series about #vyalev!

This one is light-hearted, it's about how to find a good bag to hold it. I think that the Parkinson's community can learn from the tube feeding community here, ditch the bag the company gives you! For whatever reason, they are almost always universally terrible. But luckily the pump fits well into a belt bag, and they are abundant, easy to find, actually in style right now, and cheap. The best place I found to get them was the #VeraBradley outlet website, and I have gotten quite a few good ones! Including one that makes sleeping more comfortable.

Also bear with me as I get better at editing, I find it so difficult! But I am learning.

Hope this helps! by @jasminethechemist

For the past 200 years, we have known that #Parkinson's slows down the GI track causing #gastroparesis and #dysmotility, but only recently has there been a treatment that bypasses the gut. And I started a month and 2 days ago! #vyalev has been.... complicated. But I am making a series of videos on the experience, the different ways we have problem solved, and the different resources I'm going to develop for this treatment. Also in a future episode is going to be a pharmacology with Jasmine so you're going to want to stick around to get nerdy with me! by @jasminethechemist

@theappalachianangelino and I went to the Los Angeles #LanternFestival tonight. We have been wanting to do this for a few years but something always came up. I am so glad we got to go this time. I have not told many people yet that I am going to have J tube revision surgery in the fall. date tbd still but we should know in the next few weeks, hoping for sept or oct. I have been in a lot of pain and it is taking a toll, but we have a very good plan and I am excited for the major QOL improvement that it should be (not looking forward to the recovery lol but we have a good plan for that).
This was a really beautiful experience to send out a prayer out onto the lake with our beautiful community. there was something special about seeing our neighbors remember the past, celebrate the future, and to just have hope and love for what we have. Next year we will remember craft supplies, we had the two pens that came in our box so it could have been prettier but it is the thought that counts 🤣 by @jasminethechemist

You know you are exhausted when...

You either get this one or you don't lol by @jasminethechemist

Off to the Oley Conference! For all my buds going, see you in Madison! #oley2026 by @jasminethechemist

I have been SO busy lately, my summers are always full of work travel but this time I had less than a week between major trips. I really wanted to get these #wheelchair wheel covers done between conferences because I have been planning these for a really long time. I just got my new chair in May which has been an amazing upgrade. I have been an #ambulatorywheelchairuser for about a decade now, the chair that I have used for the past 10 years never fit well because it was a second hand chair but this one is all mine and entirely made for me. Initially I only used my chair for big events like conferences, but these days I use it pretty much anytime I have to go decent distance like going to the grocery store, so having a chair that fits me and my needs is so great. This is a project that was just very fun to work on and anyone could do it, so I am excited to share how I did it. I can't wait to see all my friends at the #Oley conference this weekend! I am also going to be a judge for the wear your pump fashion show that we have at the conference and I can't wait. Between everything that is going into our launch of #stomaease #barrierbalm and just having a good time with the tube fed and TPN community, I can't wait for this weekend! (I am so tired lol) by @jasminethechemist

This is actually so funny though. I am lowkey mad that #tiktok called out my #striatialhands from #parkinson's disease so hard 🤣
I mean yes, I know. My wife got a very good laugh from this one. by @jasminethechemist

Update on the #jttube swap! Doing well recovering! by @jasminethechemist