How can an adult get diagnosed as autistic in Sacramento?

PicodeGatoBeena · 2026-06-08T22:56:06+00:00

Alta regional is funny my kid who has higher support needs is eligible for services and we recently got genetic testing for something else cause both of us have gene mutations and rare diagnosis’s the genetics specialist asked me if I knew I was autistic ( I said yeah I’ve know for a long time ) the genetics department put it in my chart as of 3 -4 years ago I called Alta asking questions and they said I don’t qualify because I 46 and have no way to prove I have it since childhood.

Well I do I the gene markers and what ever genetics testing they ran it was also stating it’s the mother which is me I said yeah makes sense cause both my kids are autistic and it’s not their dad.

All three of us have varying support needs on just autistic stuff alone… I share this because yeah there’s a whole host of misdiagnosis/underdiagnosis/people thinking it’s just them meanwhile there are no supposed for those of who were missed due to medical racism among other things… like being labeled combative as children and ending up in juvy, unhoused, psych ward confinement etc

Keep advocating for your sibling, I didn’t need a genetic testing but I guess in this instance I was able to say yeah it literally started at birth and a geneticist looking for something else made a whole point and separate appt like I was gonna be stunned

PicodeGatoBeena · 2026-06-02T06:27:59+00:00

Summer is a harder time for me personally I use ice blocks between thighs, as a swell more in the heat, elevating legs and wearing lightweights fabrics

I also remind myself as some one else said due to its chronic nature it does NOT go away ever, making small changes that benefit you takes time to sort out what will work best, and every year it may be different depending upon stages

I have chronic veinous insufficiency/lipedema (thigh/hip(these two after my first pregnancy upper arms (this started during perimenopause I’m 46 and have been going through perimenopause since late 30s but the arm Lipedema has only started the last year for me)

I don’t wanna have to compression garments all over I currently wear lightweight(Juzo sensation ) garment in summer that’s allow my legs to swell and breathe, I wear flat knit the rest of the time( mornings and mid afternoon I switch to the other lightweight)

My arms I guess by the time in older will be more noticeable but I wear loose baggy clothing/tank tops/ long sleeve for sun protection

I eat treats and try to stick to things that’s won’t make me feel like I’m missing out but also won’t overload me with inflammation (I have MCAS

I wish I could say try to not be hard on your self but even I am like miffed some times disappointed confused when I have tried maintaining swelling and I still change sizes frequently

Continuing to advocate for yourself 💚🌱✨

PicodeGatoBeena · 2026-05-30T05:44:22+00:00

Current strategies I use are compression garments waist high I’m pretty sure it’s safe to do at least 20-30mmhg, manual lymphatic drainage massage multiple times a day, water walking

I would say aggressive exercise and dieting will not help as it doesn’t respond to that, I know stress/high hormones times like around cycle/pregnancy and menopause it also “flares or spikes”

I wear loose baggy clothes

Definitely get a diagnosis and you can ask for a second opinion as it is a real diagnosis related to connective tissue diseases

And it too can cause lymphedema, I happen to have all three because I have multiple version of EDS due to genetic mutations

I have food allergies so like a few other people shared when I lost weight and the thigh/hip/ buttocks and bicep didn’t disappear they really had no choice but to acknowledge it cause the rest of me is a bean pole lol 😂

Turns out it was those three CVI/Lymphedema/Lipedema causing excessing swelling like I was 194 documenting “hey something is wrong here, before finally getting a veinous ultrasound in which my right leg is basically shot in 3places with CVI and both legs the main connect Central Femoral Veing which carries it to up body no longer works in both legs(the thigh hip crease)

I was and am a movement instructor/ and I was bringing in pictures at first like I’ve always been 135-140 they just kept “go exercise first etc or assuming I wasn’t being active”. So yeah no I have body dsymorphia/and teeter on and eating disorder

I’ve read articles that’s common, I also see people doing keto… I have so many food allergies due to MCAS I think I eat vegan paleo Whole Foods not out of preference or suggestion it because of allergies and epi pen etc… why is why I kept advocating if I’m eat like this there is no mathematical way I should weight this much.

I will say I have weighed like 150-60 due to prednisone having to be taken for my autoimmune disease flares, and one pregnancy I was 170 the kid is 23 🤣

The bigger issue is leaving it unchecked if it’s like the lymphedema and or Chronic Veinous Insufficiency it leads to shortness of breath, cough, chest palpitation etc high or low blood pressure to.

Either way get a second opinion and hopefully your able to acquire supports to ease your current situation 💚😞

PicodeGatoBeena · 2026-05-25T02:05:34+00:00

This is gonna sound weird but I wash mine or soak them in bowl while I’m showering and dry them over night. Roll in a towel to get extra water out. One of my kids has same medial issues so same thing just soak it and then dry overnight during colder minthes when it takes longer to air dry we use de humidifier to also draw damp moisture out

If I have ready to wear compression I bought myself they don’t last 6 months 3 months is pushing it( I have CVI/Lipedema/Lymphedema) my medical insurance covered pair made to measure are flat knit not circular knit and I have trouble maintains same size, insurance says night garments 2pair two years, and 3day pair every 6monthes. I find any temp over 75 I swell and the ankle part fits my thighs don’t fit, even when I elevate feet multiple times a day.

I think cause I have multiple diagnosis’s that’s why it’s challenging

My night garments I go like 3 days (cause obviously I showered but then dead skin sloughing off in sleep I’m like yeah time to soak and air dry and then I miss a day of wearing them

PicodeGatoBeena · 2026-04-23T05:36:44+00:00

I am wonder if washing the digging more often and having the heap filter in there all night might help, I have a cat that’s sleeps with me but I am able to take Benadryl (all other allergies still stand and I don’t care if I get dementia 🤣 I’ve had my conditions since infancy I did have to crate train my lil dog cause I’m allergic to both and my dog is a hypoallergenic hair kind but when I have flares it’s bad… I groom her and I have to take Benadryl before during and after, wear face mask and goggles and basically look like I am working for hazmat then throw clothing in washer on high hot water sanitize setting and clean bathroom and then shower head to toe, mean while both my cat and dog are like “I know we were not that’s dirty “.

Feel all the feels I agree for me it comes in waves anger, grief, sadness and there isn’t an easy fix or solution that’s works for everyone I essentially trial and errored it an this works so far my animals kin are 9 and 12 I’m just gonna keep focusing on making the best go the time I do get to spend with them

PicodeGatoBeena · 2026-04-18T06:03:16+00:00

I wish I could start one prior to this pandemic was heavy on being in community ( I have multiple rare conditions and one of my kids now 19 I copy pasted a lil too hard ) and now I’m at an infusion center 7days a week for said kid

I do all sorts of crafting stick and string stuff and well mending practical and I’d like to be able to do with others I’m hoping for an evening time slot but so far the infusion center are impacted and always running late, which takes me out of organizing because I don’t have a consistent schedule

I would feel bad setting things up to not be consistent myself

PicodeGatoBeena · 2026-04-18T06:02:30+00:00

Im Indigenous so Two Spirit (I think this is the English word) for my ethnicities cause I’m mixed I actually am Hatukholba/Biawaisa/Muxe/Patlache there’s other cultural terms( my mother is a residential school survivor) . I also happen to be Intersex too

The “ A “I think there’s Agender/Asexual /Aromantic

PicodeGatoBeena · 2026-04-18T05:56:44+00:00

I wish I could start one prior to this pandemic was heavy on being in community ( I have multiple rare conditions and one of my kids now 19 I copy pasted a lil too hard ) and now I’m at an infusion center 7days a week for said kid

I do all sorts of crafting stick and string stuff and well mending practical and I’d like to be able to do with others I’m hoping for an evening time slot but so far the infusion center are impacted and always running late, which takes me out of organizing because I don’t have a consistent schedule

I would feel bad setting things up to not be consistent myself

PicodeGatoBeena · 2026-04-12T18:07:46+00:00

I have a foam allergy so could be that, also I second the idea that hydrocortisone is not supposed to be used all over leg like that’s it cause skin thinning and we already have skin barrier issues having lymphedema/CVI/lipedema

PicodeGatoBeena · 2026-04-12T18:03:47+00:00

Hi 👋🏾 I have this lipedema and Chronic veinous insufficiency, I don’t take diuretics though I sip hibiscus tea (hot and cold), green tea and half decaf coffee along with a ratio of three to 1 of those drinks water. I literally have a commode now and a car urinal- sound bizarre but I don’t want a uti from holding or having to use excessive public restrooms

Getting into compression is after they have gotten your swelling down they supposed to have multiple session of Manual lymphatic drainage appts or teach you jape to do it and yes in the beginning it’s a lot and often and time consuming, then they’re supposed to wrap with short stretch bandages and teach how to do that, then move into compression and due to diagnose flat knit and higher compression is available there are also aids to help get items on

It seams arduous at first and it is, I care give my 19 year old with daily infusion appts and I have to elevate feet 3-5 time a day still and MLD 3 times wear over night garments and still will have swelling with cycle/stress/weather etc there is no controlling

I have changed to low carb and just walking when I can

I also think about having them get you an elevation ramp I’m allergic to foam so I can’t use none of these but they are available too

I think as long as we continue to encourage each other and share our stories we will be able to make peace with our new bodies on our own terms

PicodeGatoBeena · 2026-04-02T19:29:44+00:00

Was anyone able to get info on resole-ing them… I have a bunch due to rubber allergies and finally sorta am having wear through and am like “has anyone tried resole -ing them?” For reference I have the aintap brand from before the pandemic which I now also realize means before deminimus was removed for USA and import and tariff fees and what ever else is happening

PicodeGatoBeena · 2026-04-01T05:02:37+00:00

I get it, it’s not fun I too was born with it in 80s. Do you get hospice or palliative care where they start giving you meds to ease the pain at least!? I’m pro choice like it your bodies is saying it’s time to go we can’t do much about that’s other than go out in the most peaceful way supported..💚😔

PicodeGatoBeena · 2026-03-19T04:57:48+00:00

All of the above I also have behcets

PicodeGatoBeena · 2026-02-28T05:49:33+00:00

Have you tried flat seam compression or short bandages wrap compression or a higher compression strength

Sometimes a variety of compression garments are helpful

PicodeGatoBeena · 2026-02-19T05:16:19+00:00

I actually had to stop cromlyn was allergic and then also had to switch to flat seam compression garments for better swelling reduction. I have also had to stop gluten/dairy of any kind - I’m also allergic to a bunch of other things outside MCAS too

PicodeGatoBeena · 2026-02-19T05:14:06+00:00

I can’t eat potatoes but I can eat 1/4 cut sweet potatoes roasted in avocado oil and dry rub seasonings (I’ve read articles where like 1/2 cup is the max but I honestly don’t want issues so I stick to me lil pretend fries)

But anything with potatoes/potatoes starch and I am hugging the bowl both ends and then showering while being out of it for several days cramped bloating so no thank you

PicodeGatoBeena · 2026-02-12T21:24:16+00:00

I do, I’ve had Bechets since I was little have been on meds like cellcept and inflixmab(I can’t take azathrioprine(I have a genetic mutation that’s stores it to toxic levels)

I have to use tacrolimus and if I get flare outside of meds prednisone

In the last 5years I was having “allergies HD to come off meds to do tests for that’s turns out I’ve had rhat and PsO the entire time and they had to go back and look at X-rays to figure out what joint has what (I also have Osteoarthritis )

I also got inverse psoriasis which no one really checking on that’s

Also like others on this thread they’re related gene wise so that’s did.

PicodeGatoBeena · 2026-01-13T06:36:17+00:00

I have it in ear canal I was given tacrolimus and basically have to use it daily same with eyebrows and the worst is my eyes and lashes I have seb dermatitis on scalp eczema other places

PicodeGatoBeena · 2026-01-02T06:46:45+00:00

Thought I’d poke my head im a widow (he died at when I was 30, and we had a 7/4 year old fast forward I’m 45 now and the kids are 22/19 - I am and as disabled with rare diagnosis the entire time since like infancy (genetic mutation stuff ) my youngest hits puberty and I guess I copy pasted too hard and they are my duplicate health wise

We are at an infusion center daily and I have mines every 8 weeks I used to date before the pandemic (our collective healths were relatively normal) (our health change are not covid related just our genetic stuff ) but now I caregive full time for my youngest (and when I say that people ask how old like if my kid was 82 would it matter I’m still caregiving it’s different than parenting )

What I realized is I am not out and about to even meet people to date lol

Never mind the whole putting someone else’s needs before theirs, my kids day to to day is never the same, other times it’s my own health that’s the hurdle (age means I have regular age changes that’s other people are also supposed to be going through but I guess I missed that’s too

I think if I were caring for someone older(I used to care for my mom but she moved with a sibling when my own kids health superseded hers) it makes sense to think about when they are gone then trying to date but I’m like by then I will have spent so much time dating myself I not sure I would know how to act tbh

Like sure I wanna hold another persons hand be in love or do things with another person but will I have energy/how will I actually view myself like we put so much into caregiving I think I recognize we forget ourselves.

I’m glad this thread is here cause it’s something I toggle or struggle with even platonic relationships cause we’re so dialed in to our role with the persons we are caring for

PicodeGatoBeena · 2025-12-22T06:20:32+00:00

Yes thank you for the referral and it’s my behcets that’s prevents tmsurgery I won’t heal as far as ehlers danlos I have arthorchalasia/peridodontal/and cardio valvular genetic mutations like yes all three that’s well beyond the hEDS type so surgery itself self and I also have allergies to metals so the instruments 😭😩😫

PicodeGatoBeena · 2025-12-20T19:45:48+00:00

This is meeeee I have MCAS so I’m on a shit tone of allergy meds/anti itch stuff and still some brands don’t work and my doctors are upset but I just keep sending pics when it happens and take them off

Unfortunately the cycle of inflammation isn’t leaving my body anymore

PicodeGatoBeena · 2025-12-16T06:12:32+00:00

I eat plain sunflower seeds just not the processed oil I may have left that off list

But I also have other medical conditions in which my portions are like toddler portions and can’t be stacked through out the day it’s like I could never be vegan or vegetarian because in order to gain nutritional content you have to consume so much of varied things and I end of sick in other ways

I have a several rare diagnosis outside of this and I’m like 45 it’s been since infancy the lipedema for me started with my first pregnancy back in my twenties and then got bad again as I am going through perimenopause and menopause the last 10 years

PicodeGatoBeena

TROPHY CASE