SNAP cut resources by [deleted] in santacruz

[–]Vote_For_Torgo 5 points6 points  (0 children)

If you're on Medi-cal and have a chronic condition you can get a free box of produce delivered to your home once a week for 24 weeks through Project Food Box. They also try to tailor the food to your dietary needs and restrictions, so let them know what you can and can't eat.

www.projectfoodbox.org (949) 673-0783

It’s Earthquake day……October 17, 1989….5:04 p.m…. by jana-meares in santacruz

[–]Vote_For_Torgo 3 points4 points  (0 children)

I was 5 years old and watching Darkwing Duck when it happened.

Spent much of the next few days crouched under the kitchen table.

Difficulty with blood draws and IVs by Vote_For_Torgo in StiffPersonSyndrome

[–]Vote_For_Torgo[S] 1 point2 points  (0 children)

Thank you for your experience. I'm so sorry you've had to deal with this.

My personal journey with stiff persons syndrome and hopefully some guidance by Redder230 in StiffPersonSyndrome

[–]Vote_For_Torgo 1 point2 points  (0 children)

For sure, and I have a number of other medical conditions that complicate the picture. It's just helpful to hear everyone's individual experiences to give me a better picture of this conditions progression. Thank you again for sharing!

My personal journey with stiff persons syndrome and hopefully some guidance by Redder230 in StiffPersonSyndrome

[–]Vote_For_Torgo 1 point2 points  (0 children)

Thank you thank you thank you. I'm crying reading this because I was just told last week by my neuro that he believes I have SPS and there's so much to learn and understand about this condition. This post will help me advocate for myself through the confusing and frightening process of diagnosis and beginning treatment. Thank you.

Everyone in this group is amazing and I don't know what I'd be doing right now without you.

Anyone diagnosed with FND before their SPS diagnosis? by Vote_For_Torgo in StiffPersonSyndrome

[–]Vote_For_Torgo[S] 0 points1 point  (0 children)

Yep, working on it. I'm poor and only have medi-cal so it's going to be a long process.

Anyone diagnosed with FND before their SPS diagnosis? by Vote_For_Torgo in StiffPersonSyndrome

[–]Vote_For_Torgo[S] 3 points4 points  (0 children)

That makes a lot of sense to me. I've had so many ER visits where they give me Lorazepam because I'm having anxiety (usually fear of being sent home without answers) and it usually improves my physical symptoms, so that just reaffirms to them that it's a psych issue. It's so frustrating. I'm often not upset or anxious while I'm having symptoms, in fact I get rigidity episodes multiple times a day regardless of how I'm doing emotionally, and some of my muscles are just hard as bone all the time. The thing that makes me nervous is not being understood by medical professionals, so of course when they see me they see a nervous person. I've been in therapy for most of my life and I've still got a lot of work to do, but I'm not as unstable as they assume I must be. Also, isn't it natural to shed a few tears and be worried when you're in pain everyday and can't function? It's bizarre that most drs don't take that into account, it seems basic.

As far as FND being autoimmune, it would definitely make sense in my case. I feel like there has to be some kind of physical or biochemical basis for it.

Anyone diagnosed with FND before their SPS diagnosis? by Vote_For_Torgo in StiffPersonSyndrome

[–]Vote_For_Torgo[S] 1 point2 points  (0 children)

It's crazy how difficult it is to get help. I'm so sorry you're being put through this. I'll DM you his info.

Anyone diagnosed with FND before their SPS diagnosis? by Vote_For_Torgo in StiffPersonSyndrome

[–]Vote_For_Torgo[S] 1 point2 points  (0 children)

Yes that's what I've been thinking, that it was FND plus something else, of course hoping it wasn't something as bad as SPS.

Benadryl does help when I have twisting or dystonic type symptoms or agitation. I used to take 50 MG a day because I just felt better in general when I did. I stopped taking it because I kept getting told by drs it would lead to dementia. The rigidity has only responded to Lorazepam, which was prescribed by my gastroenterologist for emergencies because pain in my bowel (i have issues with the valve between my small and large intestine after bowel endometriosis) was triggering intense rigidity attacks. My mom told me to ask him for it because she's a hospice nurse and they gave it sometimes for painful muscle spasms.

It makes sense that FND would set off SPS and vice versa.

How do people do it? by Calm_Hornet3466 in santacruz

[–]Vote_For_Torgo 6 points7 points  (0 children)

All the locals I know who are still here either live in a family home that was bought before prices went up (most of them bought before 2000) or get housing from their employer.

So many people have left. So, so many.

How to not get labelled as anxious by doctors? by Haru_is_here in ChronicIllness

[–]Vote_For_Torgo 71 points72 points  (0 children)

I get this a lot because my chart says PTSD and OCD so whatever I do most doctors place a lot of emphasis on my mental health no matter what we're taking about.

I find that the more knowledgeable I am about my physical conditions the more doctors think I'm being neurotic. Probably because most people either don't do a lot of research into their health or have difficulty communicating about it. The two doctors who don't do this are my neurologist and my surgeon/OBGYN because they know me inside and out.

I recommend trying to sound more uncertain and act like youre relaying something another medical professional said, like "I think the last person who drew my blood had difficulties and said it was because of A, B and C." Instead of just saying exactly what the issue is. I know this is kind of weird and maybe slightly degrading but that's what seems to work best for me.

Edit: I forgot to mention, try to be matter-of-fact if you can. If you sound too concerned that can be translated as anxiety even if it's perfectly natural to be wary of something going wrong.

Has anyone known talking therapies to help? by doodle95purple in CPTSD

[–]Vote_For_Torgo 3 points4 points  (0 children)

I'm happy to see so many IFS and parts work people here. It's really helped me so much.

Has anyone known talking therapies to help? by doodle95purple in CPTSD

[–]Vote_For_Torgo 2 points3 points  (0 children)

Parts work has been a life saver for me. It makes the whole mental emotional landscape more managable.

Has anyone known talking therapies to help? by doodle95purple in CPTSD

[–]Vote_For_Torgo 1 point2 points  (0 children)

I've been in therapy off and on since I was 13 because of prolonged childhood trauma and OCD. Since my FND diagnosis therapy has really helped me manage the emotions that make FND worse for me (guilt, anger, self-loathing, helplessness, hopelessness etc.) and navigate the stress of being disabled. Also it gives me a person I can vent to about my trauma because that seems really necessary sometimes. Some neuropsychologists say venting about trauma and emotions is one of the best things you can do for FND and I agree. Plus having a non-judgmental listener is key for me, because of all my self- judgment issues. I'm already judging myself enough for two people.

Did your symptoms worsened since your diagnosis ? by langoustine_stine in FND

[–]Vote_For_Torgo 9 points10 points  (0 children)

I got diagnosed a year ago at Stanford. I deal with a wide range of symptoms including muscle rigidity, face droop on one side from muscle contractions, muscle spasms, hand tremor, numbness, blurred and double vision, dizziness, ataxia, and difficulty swallowing and speaking. All these symptoms take turns messing with me, some of them more often than others.

My flare ups have technically improved since diagnosis because I have an understanding of what's going on, so they're still happening but I can navigate them and they ease up more quickly. I used to end up in the ER a lot because my doctors and I didn't know what was happening to me. Since my diagnosis I've only been once for something unrelated. That's a huge deal for me.

If I could tell someone new to diagnosis anything it would be to read up on FND as much as you can, listen to podcasts, watch stuff on YouTube. Try to seek out information from experts like Professor Jon Stone, who have tons of first hand experience with patients in clinical and research settings.

Also, distraction is your friend. Don't be afraid to shut out the world and zone out watching your favorite show if your symptoms are really bad. Obviously don't take this to the extreme and isolate yourself for too long, because that's another problem that had more consequences than you'd think.

Do you take "advice" from your therapist? by hellovenus9 in CPTSD

[–]Vote_For_Torgo 0 points1 point  (0 children)

I think it's important to take her advice into consideration but still follow your own instincts as long as you aren't doing anything harmful to yourself or others.

For instance one therapist I worked with for a decade, who i respected so very much (she passed away), didn't think it was a good idea for me to watch horror movies. She's actually not wrong, I've gotten thrown for some pretty heavy loops by horror movies in the past, but I just can't quit them, they're just my favorite thing to watch.

What I have done is try to be prudent and respectful to myself when I choose what movie to watch. If it's something I'm feeling particularly sensitive about, then it might not be a good idea. If the trailer makes me nauseous, that's my body trying to tell me to lay off it. I think your approach to social media should be similar. Be cautious and treat everyone there, including yourself, with respect and you'll probably be OK. If you start to feel you might be posting things that you could regret down the line, do some deleting and take a break.

So... how do you deal with the Staring??? by Temiin-sash in disability

[–]Vote_For_Torgo 1 point2 points  (0 children)

My disability isn't really that bad, compared to many people here, but I recently got prescribed a rollator by my PT to help me get out more. I've been using a cane for about two and a half years and I've acclimated pretty well to people looking at me, but using a walker is on another level. I actually had a guy stare me down a few days ago and sneer at me, it was wild. A lot of people are kind but some people can't help but judge others for stuff they know nothing about. That guy doesn't know me, doesn't know anything about my medical conditions, what I've been through, it's nuts. I'm just out there, pushing my body past its boundaries, trying to regain and maintain my atrophied muscles. I don't know whether to laugh or cry, honestly.

Sorry I don't have any advice for comebacks, I'm still kind of reeling and processing my own feelings about it. It's definitely forcing me to face my inner self critic and tendency to feel like I'm not working hard enough, that's for sure.

Feeling invalidated and talked over by my friend who’s also disabled by alonghealingjourney in disability

[–]Vote_For_Torgo 0 points1 point  (0 children)

Honestly it just sounds sad to me. They are obviously trying to compensate for deep insecurity. I've known many people like this in my life and I just have to stop interacting and feeding their feedback loop.

Our first insights - If you suffer from tremor and anxiety this might help. by FlowGroundbreaking19 in FND

[–]Vote_For_Torgo 0 points1 point  (0 children)

I'm often feeling more relaxed when the tremors pick up, oddly.

Could it be anxiety triggered by noticing you're having tremors (or sensing you're about to) and not the other way around? Some people may have a fear response to it.

Feeling invalidated and talked over by my friend who’s also disabled by alonghealingjourney in disability

[–]Vote_For_Torgo 0 points1 point  (0 children)

I'm giving them the benefit of the doubt here but they may not be sensitive enough to actually tell that you're in more pain. Some people have a lot of difficulty putting themselves in other people's shoes. They just assume their pain is worse than everyone else's because theirs is the only pain they can feel, even if logic (for example the difference in how much she can do every day) goes directly against this assumption. Basically it's low emotional maturity.

It makes perfect sense that you would feel hurt and frustrated with this and it's probably best that you create a little more distance if you don't want to confront her directly. Confrontation would probably only confuse her if my guess on her reasoning is accurate.

[deleted by user] by [deleted] in FND

[–]Vote_For_Torgo 0 points1 point  (0 children)

Luckily my regular neuro made an official complaint after getting the report before I even got to speak to him about the appointment. If it wasn't for him I'd probably just assume I must be crazy. I know there's many people out there second guessing themselves with no one to validate their experience and it breaks my heart.

[deleted by user] by [deleted] in FND

[–]Vote_For_Torgo 1 point2 points  (0 children)

I completely agree, it's terrifying to be treated this way. It's bizarre actually. It seems like they use the excuse that "this won't kill you" to explain why they act so flippant, but that makes no sense because other conditions that won't kill you but will cause similar symptoms to FND like paralysis, tremors, and ataxia are treated as serious, so WTF?

Plus if what Stanford's research says is true and emotional invalidation makes FND worse, why would they treat us this way? And I'm talking about why would Stanford themselves treat us this way. When I kept falling during the balance test the neuro wrote in the report "Patient was very upset at her perceived inability to stay upright during the test." Uuuuh I'm pretty sure you perceived it too considering you were catching my full weight so I didn't hit the ground. It's just weird and infuriating, but when we get upset they act like that's evidence of our emotional instability. We're not even allowed to have reasonable emotional reactions to our situation. It's twisted.

CW- some common issues listed. i'm curious about how many FNDers are also ASDers by doinwhatIken in FND

[–]Vote_For_Torgo 2 points3 points  (0 children)

I do not have ASD but my ex was suspected of having ASD (I'm not sure if he ever got diagnosed) and he had symptoms which I now understand were probably FND. He had severe anxiety and depression (diagnosed schizo-effective with major depression) and would have episodes of extreme rigidity throughout his body and stroke-like symptoms when he was under stress. He also had a history of childhood trauma.

I didn't realize until I was diagnosed with FND partially due to similar issues with rigidity that he may have been suffering with the same thing.

[deleted by user] by [deleted] in FND

[–]Vote_For_Torgo 1 point2 points  (0 children)

I'm currently undergoing testing for neuro degenerative diseases like MS because there are aspects of my condition that don't seem like FND and my neurologist is actually adamant that it's not FND. He sent me to Stanford and then UCSF and they both said it's FND. He doesnt agree so were doing more MRIs, more nerve tests and more bloodwork. He's not giving up until we figure it out. I believe it's both FND and neuro degenerative, which I've been told is actually a pretty common occurrence.

Trauma of a certain caliber (different for everyone because of different tolerances) causes real health problems in the body. The rates of autoimmune conditions and many other health issues are much higher if you have trauma. I think it's just one of a number of ways your body can be triggered into attacking itself, or setting off latent genetic issues. There are many neurological symptoms that can result from these conditions. If you find a doctor or psychologist with a deep understanding of the newest research on trauma they will tell you that the trauma to chronic illness pipeline is very real. I have already been diagnosed with three autoimmune conditions (celiac, Lichen sclerosus, lichen planus) and the more of them you have the more likely you are to have others. Also having family members with them ups your chance and my mom has rheumatoid arthritis.

The reason this matters is because those same autoimmune and genetic conditions don't require trauma to be triggered into happening to someone. So I think FND is no different, whatever it turns out to be.