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Ataxia from Gluten ?

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Have any studies been done on the actual effect on Celiacs of exposure to gluten transdermally? I could be very wrong but it strikes me that this might be an unfounded fear as long as hands are washed after application and it is kept away from the lips and the mouth.

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Kate333, I'm not so sure about that. If consumers would start asking, "Where is this made" and refuse to purchase meds and personal health products not made in the USA I think over time it would happen. But of course, this presupposes there are options available. I seem to remember early in his tenure, President Trump leaned on some automakers to keep their plants in the USA and was successful. But at the same time, Americans would need to become willing to spend a little extra money to buy USA made products.

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@trents....Doubtful.  BOTH parties are so corrupted by corp. $$ and MOST products here are STILL made and imported from cheap foreign factories (as they have been for the last 40 years), including cars, drugs, and even American flags, "Made in America" labels, and "MAGA" T-shirts and baseball caps.  ROFL.  IMO, that press conference was just empty political theater to fool people because MOST of those workers, including those in the auto plants mentioned in that press conference, were all laid off after that "big announcement" and had to watch their jobs shipped to cheap factories in Mexico.....NOT exactly what I would call "success". 

Success would be US policies REQUIRING that ALL drugs (and most every thing else) be made in the US and VIGOROUS safety regulations exist and be enforced--hardly a priority in either party, both of which are funded by--drum roll--MILLIONS in corp $$$.  Also, IMO, the issue isn't "extra $$ or higher prices" or lack of consumer savvy/interest, because Americans have been fuming about this issue for HOW MANY YEARS/DECADES? to no avail.  The REAL issue is "normalized" corp. greed and "legalized" corp. bribery of politicians.  That "status quo" will ensure that NOTHING changes, no matter how loudly we citizens scream or how much more we are willing to pay for US-made products.  And if we had REAL "free markets" in the US, higher prices wouldn't be an issue because these companies would be forced to actually compete for customers instead of relying on the safety of their political bribe system to maintain artificially-inflated, monopoly-fueled profit margins and prices. 

That's too bad for us (consumers), because many of these shoddy factories abroad--esp. drug makers--have been accused of unconscionable safety violations:  eg., watered down/tainted chemo or heart medications.  Critically ill patients have enough to worry about in life.  They shouldn't be needlessly subjected to the additional stress of wondering/worrying whether their Tamoxifen or Digitalis are "real and pure" or just compressed, dried horsesh$t pills made in some sweatshop abroad by exhausted, overworked grade school dropouts who earn a few paid a Renminbi or Rupees an hour.  I honestly don't know how some of these big pharma CEOs sleep at night, knowing they are intentionally playing Russian-Roulette with OUR safety and lives...  

Speaking of sleep, signing off the chatroom for now and signing off future political comments here (as this chatroom is not designed for that purpose)...😁.  Have a great evening/weekend!

1 minute ago, trents said:

Thanks...much appreciated....!!

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49 minutes ago, trents said:

Have any studies been done on the actual effect on Celiacs of exposure to gluten transdermally? I could be very wrong but it strikes me that this might be an unfounded fear as long as hands are washed after application and it is kept away from the lips and the mouth.

This was from Trisha Thompson, registered  Dietitian, who has celiac disease and works with the FDA to help keep us Safe.  She tested a few products:

https://www.glutenfreedietitian.com/gluten-in-cosmetics-results-of-testing-on-lipsticks-and-lotions/


 And this from Melinda Dennis.  I met her once at a celiac disease conference:
 

https://nationalceliac.org/celiac-disease-questions/using-gluten-free-skin-body-products-someone-celiac-disease/

 

 

56 minutes ago, trents said:

Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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Can't resist...must poke the bear....forgive me....

Allergenicity of Deamidated and/or Peptide-Bond-Hydrolyzed Wheat Gliadin by Transdermal Administration

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7278741/

 

Who wants a wheat allergy on top of Celiac Disease?

2 hours ago, trents said:

 

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Thanks everyone who posted links above to articles about gluten in personal care products. 

These articles, while interesting, are not very reassuring because none cite valid medical studies or study data/results showing the safety of personal care products to people with celiac disease or gluten intolerance...i.e., double-blind, large, comprehensive medical studies of the effects of G-containing personal care products on study subjects with celiac disease or gluten intolerance. 

Dr. Alessio Fasano's statement is revealing: “There is currently no scientific evidence that gluten used in cosmetics that are not ingested is harmful to individuals with celiac disease....If you have celiac disease, then the application of gluten-containing products to the skin should not be a problem, unless you have skin lesions that allow gluten to be absorbed systemically in great quantities. The reason why this should not be a problem is that, based on what we know right now, it is the oral ingestion of gluten that activates the immunological cascades leading to the autoimmune process typical of celiac disease.” 

This kind of hedging language tells me that no reliable valid studies/data to date have been done on the safety of personal care products to people with celiac disease or gluten intolerance. 

And the statement  "The Food and Drug Administration (FDA) does not issue rules addressing the use of the term ‘gluten-free’ in labeling..... Therefore, gluten does not have to be definitively declared on [cosmetic] labels. The FDA, however, does not prohibit cosmetic companies from labeling products gluten-free" tells me that the FDA doesn't even regulate any products to ensure they are safe or gluten-free.

So, until real studies are done, we can't assume these products are really safe.

 

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1 hour ago, Kate333 said:

This kind of hedging language tells me that no reliable valid studies/data to date have been done on the safety of personal care products to people with celiac disease or gluten intolerance. 

You are right! In fact, I've never seen any studies done on this, so I don't know how he can even made such a statement at all. What he should say directly is that we just don't know because there haven't been any studies on this. 

I've heard too many anecdotal stories of people with dermatitis herpetiformis or severe gluten sensitivity over the years, stories of symptoms like itchy rashes that some get when using gluten-containing cosmetics, shampoos, lotions, lipstick, etc., to discount them and say that it must really be something you're eating. If there are gluten-free versions of these products then why not just play it safe and go with that?

I have high respect for Dr. Fasano and all he's done, however, such statements could be harmful to some people and I think what he should say is that there are so many gluten-free options available now, why pick the one that contains gluten? 


Scott Adams

Celiac.com - Celiac Disease Board Moderator

Founder Celiac.com

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While I agree that there have been no studies and there probably never will be (it is all about the money to fund it), I still think that personal care products that are not labeled gluten free, but contain no gluten ingredients are safe.  After years of learning to read labels, I still can not purchase a product that contains gluten even if I am not going to ingest it.  As far as those that do contain gluten ingredients, I not buy them.  I show my displeasure by not supporting those corporations financially.  

Kate333 asked about Vaseline Intestine Care Lotion and Suave products.  These are manufactured by Unilever who does a good job listing all ingredients.  They are not labeled gluten free because they are not tested and do not meet the FDA gluten-free recommendations.    But just recently, the Gluten Free Watchdog, tested the aloe Vera version on the Vaseline lotion.  It tested below 5 ppm which is as low as it gets per the equipment.  It can be considered safe.  I use the Intensive care lotion as does @squirmingitchwho has DH.  If it is safe for someone with DH, it is safe, in my opinion.  Besides, I use these products and I have healed — biopsy confirmed on a repeat endoscopy.  

Most celiacs tend to get hidden gluten exposures from cross contamination in their homes or at restaurant.  The risk from processed foods or personal care products  is a lot less than you think.   Certified gluten-free products are expensive.  Something to consider in a pandemic/recession.  But may be worth it if you have a IgE wheat allergy (or just make your own homemade versions like you did 100 years ago).  


 

Edited by cyclinglady

Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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1 hour ago, Scott Adams said:

You are right! In fact, I've never seen any studies done on this, so I don't know how he can even made such a statement at all. What he should say directly is that we just don't know because there haven't been any studies on this. 

I've heard too many anecdotal stories of people with dermatitis herpetiformis or severe gluten sensitivity over the years, stories of symptoms like itchy rashes that some get when using gluten-containing cosmetics, shampoos, lotions, lipstick, etc., to discount them and say that it must really be something you're eating. If there are gluten-free versions of these products then why not just play it safe and go with that?

I have high respect for Dr. Fasano and all he's done, however, such statements could be harmful to some people and I think what he should say is that there are so many gluten-free options available now, why pick the one that contains gluten? 

2 hours ago, Kate333 said:

Thanks everyone who posted links above to articles about gluten in personal care products. 

These articles, while interesting, are not very reassuring because none cite valid medical studies or study data/results showing the safety of personal care products to people with celiac disease or gluten intolerance...i.e., double-blind, large, comprehensive medical studies of the effects of G-containing personal care products on study subjects with celiac disease or gluten intolerance. 

Dr. Alessio Fasano's statement is revealing: “There is currently no scientific evidence that gluten used in cosmetics that are not ingested is harmful to individuals with celiac disease....If you have celiac disease, then the application of gluten-containing products to the skin should not be a problem, unless you have skin lesions that allow gluten to be absorbed systemically in great quantities. The reason why this should not be a problem is that, based on what we know right now, it is the oral ingestion of gluten that activates the immunological cascades leading to the autoimmune process typical of celiac disease.” 

This kind of hedging language tells me that no reliable valid studies/data to date have been done on the safety of personal care products to people with celiac disease or gluten intolerance. 

And the statement  "The Food and Drug Administration (FDA) does not issue rules addressing the use of the term ‘gluten-free’ in labeling..... Therefore, gluten does not have to be definitively declared on [cosmetic] labels. The FDA, however, does not prohibit cosmetic companies from labeling products gluten-free" tells me that the FDA doesn't even regulate any products to ensure they are safe or gluten-free.

So, until real studies are done, we can't assume these products are really safe.

 

I worry more about most all generic drugs coming from both India (very little FDA oversight) to no oversight in China (where they are not letting the FDA in for inspections).  Pretty sad when all antibiotics raw materials come from China and most raw materials too for supplements. That is scary.  Not some lotion you do not ingest.  
 

 

Edited by cyclinglady

Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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I agree @cyclinglady that with cosmetics having "gluten-free" on the label probably isn't required, and going by ingredients is likely safe, but given the choice between buying one with it on the label vs. not I generally go with GF because they likely are more careful when sourcing ingredients than a company who may not be focused on the celiac crowd.


Scott Adams

Celiac.com - Celiac Disease Board Moderator

Founder Celiac.com

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I get the point of those who say these products are all safe "because I use/have no issues with them."  Also, there are likely individual variances in response to even minute G exposure in topical products (like any other product).  Some folks have a bad side-effect/reaction, others don't.

But as a newly-diagnosed gluten sensitive/IBS person who still struggles with daily indigestion, I want to be super-cautious and avoid risking ANY exposure, esp. since my latest tTG blood test this month showed G level is still high (81) compared to the earlier test in Feb. (73)--despite my having done everything "right" (no restaurants or even carryout/fast food; no shared food/drinks/plates/utensils; only eating/cooking "fresh" meat, chicken, fish, fruit and veggies).  That tells me that if the G source is NOT from the food I eat, then it must be coming from somewhere else, something unrelated to food?   I am just trying to pinpoint and avoid it and get those dang #s back to the "normal" range to facilitate healing.  

Perhaps tTG tests are affected by other, non-G allergies (dairy, for example)??  Since my diagnosis, I have also noticed sudden bad indigestion after eating dairy items--even those labeled "gluten-free" and/or Lactose-Free!  Or perhaps G just remains in the body long-term (and shows up on blood tests even MONTHS after it was consumed) and it just takes a long time to reach "normal" range on gluten-free diet??   I don't know the answers to those Qs.  Perhaps others can answer them....

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15 minutes ago, trents said:

Scott, are there cosmetics that have gluten-free on the label? I have not seen that but I don't look for it either in those kinds of goods so maybe I just missed it.

One of our sponsors here is EpiLynx, and they make a big line of GF cosmetics, lotions, etc. There are others...


Scott Adams

Celiac.com - Celiac Disease Board Moderator

Founder Celiac.com

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Can anyone pls. share the names/website links of companies that produce products with gluten-free labels?

Esp. interested in hand/body lotion, shampoo, conditioner, toothpaste. 

It would be so nice if there was a one-stop shopping website for ALL of these.  It's so time-consuming to do separate internet searches for each kind of item.  Not to mention all the time involved in trying to read and translate all the arcane-named chemicals and ingredients listed in ant-sized fonts on all the containers.😖

 

9 minutes ago, Scott Adams said:

One of our sponsors here is EpiLynx, and they make a big line of gluten-free cosmetics, lotions, etc. There are others...

Thanks Scott!

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I understand you cannot get gluten through your skin, but I buy only hair body and face products that are labeled gluten free...ever wash your hair and not get any of that soap water in your ears (drains to the same place), or on your face and over the lips?  Scratch your arm that you covered in body lotion and then eat that almond?  Touch your hair that you shampooed and conditioned and no, it doesn't all wash out, and then pick that almond piece out of your teeth?  And then freak out for days after you get glutened and can't figure out where the heck it came from.  Well, if your body is gluten free, then you can eliminate all that as a likely source. 

And to add to it...pets...mine eat grain free cat food, are extremely healthy, and I don't have to worry about petting them after they've licked themselves all over, or if they lick me, or I touch something they have rubbed up against or a toy they played with.

Yea, probably all minimal amounts of gluten, but it adds up in a day, and it's hard enough.  For me, that's my choice, to keep my world in my own home gluten free and safe from worry and hyper vigilance to not touch my mouth.  If I get glutened I can pretty much figure it out pretty easily.

 

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1 hour ago, Beverage said:

I understand you cannot get gluten through your skin, but I buy only hair body and face products that are labeled gluten free...ever wash your hair and not get any of that soap water in your ears (drains to the same place), or on your face and over the lips?  Scratch your arm that you covered in body lotion and then eat that almond?  Touch your hair that you shampooed and conditioned and no, it doesn't all wash out, and then pick that almond piece out of your teeth?  And then freak out for days after you get glutened and can't figure out where the heck it came from.  Well, if your body is gluten free, then you can eliminate all that as a likely source. 

And to add to it...pets...mine eat grain free cat food, are extremely healthy, and I don't have to worry about petting them after they've licked themselves all over, or if they lick me, or I touch something they have rubbed up against or a toy they played with.

Yea, probably all minimal amounts of gluten, but it adds up in a day, and it's hard enough.  For me, that's my choice, to keep my world in my own home gluten free and safe from worry and hyper vigilance to not touch my mouth.  If I get glutened I can pretty much figure it out pretty easily.

 

Thanks Bev.  I get so many different, even conflicting advice/opinions on this blog, from docs, product manufacturers, and in life that it's sometimes very confusing, difficult to know what to think....I am newly diagnosed and just learning...my blood tests are reduced from dx date but STILL too high after 6 mo. on gluten-free diet, so am trying to "sniff out" and avoid ANY potential sources--even "non-obvious" ones!  I also have bad seborrheic dermatitis (pink) scalp for a year.  Doesn't itch, just pink, obviously inflamed.  Tried various prescribed shampoos/oils with zero improvement.  So I am thinking perhaps it's also a reaction to elev. G levels in my body...   

But I 100% agree with you that caution--even extreme to some--about G exposure is the best course/protection.  If nothing else, at least it eliminates anxiety about "rolling the dice"...I would appreciate if you share some "brand names" that you use (esp. shampoo, soaps, body creams) and where purchased (store name or website).  

Since you are a fellow pet-lover, I pass along an interesting article about a veterinarian who lives with a G-sniffing "service dog" to protect herself from G sources, large and small:

https://www.willowceliacallergenservicedogs.com/news.   I wish these wonderful dogs were widely available to most of us!

Cheers,

Kate  

 

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1 hour ago, Kate333 said:

Thanks Bev.  I get so many different, even conflicting advice/opinions on this blog, from docs, product manufacturers, and in life that it's sometimes very confusing, difficult to know what to think....I am newly diagnosed and just learning...my blood tests are reduced from dx date but STILL too high after 6 mo. on gluten-free diet, so am trying to "sniff out" and avoid ANY potential sources--even "non-obvious" ones!  I also have bad seborrheic dermatitis (pink) scalp for a year.  Doesn't itch, just pink, obviously inflamed.  Tried various prescribed shampoos/oils with zero improvement.  So I am thinking perhaps it's also a reaction to elev. G levels in my body...   

But I 100% agree with you that caution--even extreme to some--about G exposure is the best course/protection.  If nothing else, at least it eliminates anxiety about "rolling the dice"...I would appreciate if you share some "brand names" that you use (esp. shampoo, soaps, body creams) and where purchased (store name or website).  

Since you are a fellow pet-lover, I pass along an interesting article about a veterinarian who lives with a G-sniffing "service dog" to protect herself from G sources, large and small:

https://www.willowceliacallergenservicedogs.com/news.   I wish these wonderful dogs were widely available to most of us!

Cheers,

Kate  

 

I use Andalou shampoo, face cleanser, shower gel, serums, and lotions, they are what they call "verified gluten free."  https://andalou.com/ 

Sign up for their newsletter and they often have coupons and sales.  The shampoo doesn't lather a whole lot though, but I love their face serums and lotions/creams.  They are very high quality and you don't use a lot, so it lasts longer than you think.  

Another gluten-free shampoo that costs a lot less, lathers a lot, but not as moistourising, but I can get at my grocery store is Renpure. 

Another brand I have tried only a little, and I like it, but you have to buy a lot to get free shipping, is Savonnerie (https://gfsoap.com/).  

Lip balm...EOS from Costco.  To me, a big essential for an older lady like me.  I'm 63 and with constant protection from lip balm, my lips and pink and natural plump, not a single wrinkle.

Lipstick and Mascara - https://www.redapplelipstick.com/  Sign up for newsletter, get a monthly discount code and sometimes big sales. I absolutely love the mascara.  My eyes are real sensitive, and this one does not bother me, high quality brush, not gloppy, which I hate.

Make Up - I was switching from Bare Essentials, aka Bare Minerals to another powder one (can't remember the name), but it went out of business recently, so I'm using up my Bare Essentials. They don't label it gluten free, at least my older stuff is not, but I haven't had any problems with it.

Oh God, I had a really bad scalp dermatitis (not sure if it is the same, but this might work)...it works better than the anti fungal stuff from the dermatologist and that Nizarol that makes your hair drop out...APPLE CIDER VINEGAR.  Get yourself a squeeze bottle (NOT GLASS) with a little tip (like they use for drizzling sauces on food) so you can put it onto your scalp.  Mix half and half of ACV and water.  Keep the bottle in your shower.  After shampooing and conditioning and rinsing out REALLY WELL (your skin is naturally acidic as a protection, my theory is that residual conditioner feeds whatever makes the dermatitis and changes the PH away from being acidic), squeeze a little of the ACV mixture onto your scalp, be careful NOT to tip your head forward or it will end up in your eyes and you will not be happy.  You don't have to leave it on very long, just smush it around with your fingertips and then rinse it out really well.  I did this and got my scalp issue to completely go away, and I continue to do this about every time or every other time I shampoo, it's never come back.

Thanks for the good article!  I hope all this helps.

 

 

 

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Thanks for all that info, Bev!

I wish you/family a safe Happy 4th!  I am staying indoors as our gov her in Calif. just issued another order today, shutting everything down again....:(.  Can't say I was surprised...crazy people here have been acting like bats out of hell, flocking to beaches, restaurants, bars and streets in droves since Memorial Day...sigh...

 

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13 minutes ago, Kate333 said:

Thanks for all that info, Bev!

I wish you/family a safe Happy 4th!  I am staying indoors as our gov her in Calif. just issued another order today, shutting everything down again....:(.  Can't say I was surprised...crazy people here have been acting like bats out of hell, flocking to beaches, restaurants, bars and streets in droves since Memorial Day...sigh...

 

Yea, crazy people up here in Seattle too, and all the protesting that turned into rioting.  Not much social distancing there.  I'm previously from Calif. and my sister is there still.  Happy 4th to you!  I will be staying home as well, missing the family picnic that is not allowed up here also (phase 2, no gatherings over 5 people), but they're doing it anyway.  I'm high risk because of asthma, so protecting myself.

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I hear you... The looting and rioting and crowds here were also just AWFUL.  The glass doors a local pharmacy were shattered and its shelves looted.  The stupid gov/mayor here said NOTHING to condemn, question it.  They are too afraid of "offending" certain people (most of whom don't even bother voting)....  I got a jury summons the other day!! Can you believe it?  CA officials think it's perfectly fine to cram a crowds of people into a small room to conduct trials for petty misdemeanors during the CV crisis...yet they have zero concern about felons who burn, loot, riot, and expose people to CV with impunity.   Votes...everything is about winning VOTES--not common sense, sanity😵..

My doc said people with G/IBS issues are not on the "high risk" list posted by CDC...but I am taking NO CHANCES and still really scared every time I have to go out to buy food, get meds or visit a doctor.  This whole mess has really made my IBS symptoms/anxiety go through the roof....😢

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21 hours ago, Kate333 said:

I hear you... The looting and rioting and crowds here were also just AWFUL.  The glass doors a local pharmacy were shattered and its shelves looted.  The stupid gov/mayor here said NOTHING to condemn, question it.  They are too afraid of "offending" certain people (most of whom don't even bother voting)....  I got a jury summons the other day!! Can you believe it?  CA officials think it's perfectly fine to cram a crowds of people into a small room to conduct trials for petty misdemeanors during the CV crisis...yet they have zero concern about felons who burn, loot, riot, and expose people to CV with impunity.   Votes...everything is about winning VOTES--not common sense, sanity😵..

My doc said people with G/IBS issues are not on the "high risk" list posted by CDC...but I am taking NO CHANCES and still really scared every time I have to go out to buy food, get meds or visit a doctor.  This whole mess has really made my IBS symptoms/anxiety go through the roof....😢

The one thing that the current state of the world has shown, is how we are not in control, but we can control what we expose ourselves to, and that's where we have to feel ok with doing what is right for ourselves.  I know the anxiety is tough, but learn some deep breathing or meditation or just walk in the garden or something that takes your mind off it.  I imagine our brains are like our muscles, they can only take so much at once, and they have to be given a break to rest, just like muscles. 

My mom (who was raped when she was a teenager in Hawaii and forced to marry the a$#@$%$$ because she got pregnant, her and the baby beaten and abused by him until she literally almost lost her mind), always was the most sunny smiling laughing person you could ever meet, always glass half full, making lemonade out of everything....she would say "Life isn't about what happens to you, it's about what you do with what happens to you."  

Take care of yourself and keep yourself safe, take strength that you are doing the best you can for yourself.  Let the burden be lifted.

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1 hour ago, Beverage said:

The one thing that the current state of the world has shown, is how we are not in control, but we can control what we expose ourselves to, and that's where we have to feel ok with doing what is right for ourselves.  I know the anxiety is tough, but learn some deep breathing or meditation or just walk in the garden or something that takes your mind off it.  I imagine our brains are like our muscles, they can only take so much at once, and they have to be given a break to rest, just like muscles. 

My mom (who was raped when she was a teenager in Hawaii and forced to marry the a$#@$%$$ because she got pregnant, her and the baby beaten and abused by him until she literally almost lost her mind), always was the most sunny smiling laughing person you could ever meet, always glass half full, making lemonade out of everything....she would say "Life isn't about what happens to you, it's about what you do with what happens to you."  

Take care of yourself and keep yourself safe, take strength that you are doing the best you can for yourself.  Let the burden be lifted.

Amen! Your mom refused to play the victim card.

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💔for your dear mom, Beverly.   

"Life isn't about what happens to you, it's about what you do with what happens to you." What a wise, heroic woman!!  So few of us get through this life without any trauma or pain.  As Hemingway famously said:  "The world breaks everyone and afterward many are strong at the broken places."

Thanks for the kind, encouraging words.  Have a happy, safe 4th of July!!😍

 

 

 

   

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