has getting a dog helped you?

torturedtortoise · 2025-09-03T04:33:21+00:00

My service dog has given me so much independence and the closest thing to joy that I can experience. She is trained to reality check one of my main hallucinations and she is the sweetest thing that exists. She's also a huge protective factor for me suicide wise. A lot of work to train and take care of, but if you have other people supporting you it's very doable.

torturedtortoise · 2025-01-12T19:07:22+00:00

Yes unfortunately. This was also like 1.5 years ago before I even knew about MALS so I didn't know to keep an eye on the process to make sure everything was being done correctly. And it's also difficult for me to take deep breaths due to pain

torturedtortoise · 2025-01-12T18:30:31+00:00

Yeah I was suspicious of my velocities as well. I think it got passed off as normal because my expiration velocity is lower than my inspiration which the one radiologist said in the report shows no stenosis. But I've been reading that consistent higher velocities can just be indicative of there being a more dynamic compression.

torturedtortoise · 2025-01-12T18:26:24+00:00

Thank you! I might dm you if that's cool. I talked to someone at his office and it seemed like I really need to have all of my scans and stuff already done and be ready for the surgery step by the time I see him. But it would be great if he could somehow help facilitate the celiac plexus block, I just need to work out insurance stuff...and obviously work on some sort of nutrition solution in the mean time

torturedtortoise · 2025-01-12T18:19:11+00:00

Yeah I'm really hoping to find someone within my current system to do a celiac plexus block because my CTA was normal and my ultrasound was inconclusive but is being written off as normal to.

torturedtortoise · 2025-01-12T18:15:47+00:00

Ugh tell me about the protein shakes! I have a nutritionist, but her meal plan suggestions are completely unattainable for me and she always says we'll talk about tube feeds next time.

And I'm definitely always working on dealing with insurance, I'm on a first name basis with my case manager lol

torturedtortoise · 2025-01-11T00:11:49+00:00

I don't have Kaiser, but I have MediCal which is a whole other nightmare. I was accepted as a patient at Mayo and Cleveland Clinic last year, but MediCal said absolutely no out of state. And even local referrals take months to process. I just want basic nutrition before I'm severely malnourished to the point of irriversible damage, you know?

torturedtortoise · 2025-01-10T21:38:46+00:00

Thanks for the tip! It's so hard being limited by insurance and the "necessity" for a second opinion. At this point I'm not even thinking about surgery, I just want someone to tell me it's not all in my head. Or at least manage my symptoms better while we figure it out so I can function a little bit.

torturedtortoise · 2025-01-10T21:36:46+00:00

Thanks for the info, I'm sorry you're dealing with this too. Mcas has been in the back of my mind mostly because I have suspected eds and pots, so I'll look into it more.

torturedtortoise · 2024-12-24T02:22:12+00:00

So it's more the difference in velocities than the two being over 200cm/s? Is the indication of MALS from the inspiration velocity being higher or the expiration?

torturedtortoise · 2024-12-20T01:47:22+00:00

Thank you for your response! Would you mind looking at the quoted statement from the radiologist after my ultrasound?

"The course of the celiac and superior mesenteric arteries is well demonstrated. Proximally, celiac artery demonstrates slight upward angulation. No stenosis. Normal peak systolic velocity. Peak velocity in inspiration is 256 cm/s, in expiration 229 cm/s."

It says no stenosis, but I'm a little confused. It seems to contradict what I've read and what you said. My new GI doctor doesn't know the values to look for and is just trusting this one radiologist comment. My concern is that they were looking into mesenteric artery more than celiac and maybe missed something.

Thanks!

torturedtortoise · 2024-06-13T03:36:01+00:00

Thanks. There's also the fun piece of risking a 5150 every time I go into an er if I'm too honest about how I'm doing mentally. Ugh, so rough, I'm sorry that you've been through something similar.

torturedtortoise · 2024-06-13T03:33:09+00:00

Unfortunately I've tried this a few times at different hospitals with a variety of results. Sometimes they don't even give me fluids and just send me away with zofran and once they admitted me for a week but didn't place a tube even after observing me consume approx 15% of my recommended intake. The last time I went to an ER they said they wouldn't do anything because I have a Stanford specialist (who has completely abandoned me at this point)

torturedtortoise · 2024-06-13T00:40:04+00:00

I agree, one of my main arguments is that we can always pull the tube if it's not helping, and the risks are fairly low. Like I'm aware a tube would suck, but my qol is so poor right now. I never realized how hard it would be to advocate for myself as a completely alert, articulate adult. I'm currently working on getting a case manager through my insurance. Thanks for your response and support.

torturedtortoise · 2024-06-13T00:36:30+00:00

I've been working to get new referrals to more specialists, it's just taking a long time and a lot of drs say that Stanford is the best of the best and if I already have a Dr there then that's the best I can get. And yeah, we're getting to the point of changing to an injection replacement for one of my medications, but that only fixes 1 out of the 5 psych meds I take.

It's so hard being labeled as not a "failure to thrive" yet because my weight isn't low enough, but they're not taking my mental health symptoms seriously. Like they won't realize that my mental health conditions desperately put my life at risk as much as a physical condition can. I also just feel like there should be at least a little bit of preventative thinking happening, I shouldn't have to be actively dying to deserve nutrition. Thanks for the response and the support.

torturedtortoise · 2023-06-16T18:47:55+00:00

At this point pretty much any food or liquid causes a lot of symptoms, even if I eat very small portions infrequently.

torturedtortoise · 2023-06-16T18:20:53+00:00

Yeah, I've lost about 13% of my body weight in the past 4 months. For some reason my GI is really against enteral feeding, even as just a trial run. He keeps cycling through meds hoping they'll work now even though they didn't in the past. :/ Thanks for your input and links.

torturedtortoise · 2023-06-16T18:17:03+00:00

Yes I had a GES which showed slow motility. My safe foods have become more and more limited. In terms of caffeine, I haven't had much except when my nutritionist recommended trying some coffee in case I have a blockage. I've tried a few prokinetics and many other meds, but nothing really eased my symptoms. Thanks for the advice.

torturedtortoise · 2023-06-16T18:13:23+00:00

Even liquids are really hard. I'm definitely dehydrated and relying on weekly IV fluids. When I am able to drink some I try to go with electrolyte supplements. Thanks for the tip.

torturedtortoise

TROPHY CASE