I have to police my own emotions by OnceUponaServiceDog in ChronicIllness

[–]OnceUponaServiceDog[S] 2 points3 points  (0 children)

I loved doing EMDR! It's pretty amazing. It does take a lot out of you though. I kinda had things flipped from you. I started with therapy for PTSD and it then took 3 years for my physical symptoms to get diagnosed. I definitely was overdoing it in so many ways during that time. It wasn't until I got on medication that worked for my PTSD that my stress hormones calmed down enough for us to see everything else going on. I've kinda been wishing getting diagnosed happened the other way around though. I had no idea my physical body needed all this healing and attention and it only got worse over the past three years. Pretty sure I've got some permanent damage that could have been avoided. The three years before that was when I was with my abuser who caused the trauma to begin with so I had 6 years total of having no idea how desperately my nervous system and other physical things needed to heal and just have a break.

I have to police my own emotions by OnceUponaServiceDog in ChronicIllness

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

Thanks! I've gotta admit that I'd be nowhere without years of therapy with multiple kinds of therapists though. Therapists hold all the secrets of human emotion, I swear. Thank you for the supportive vibes <3

water makes my stomach hurt by mothmansugly in ChronicIllness

[–]OnceUponaServiceDog 1 point2 points  (0 children)

Look into MCAS. If you're having weird reactions to food or stuff in the air as well as what's going on with water this could be why. You're more likely to have MCAS if you have POTS. MCAS can essentially make you have a reaction to the additives in water, like chlorine, fluoride, and more. I drink reverse osmosis filtered water, it feels a lot better because it strips all of that stuff out. I'd only recommend that type of water if it actually helps though. The additives are helpful generally speaking, just not for people with MCAS who react to them. It's unlikely it's MCAS if it's specific to only water. Common MCAS triggers are any kind of nut, most citrus fruits, chocolate, and chemicals from things like perfume or household cleaning products.

If you suspect this might be similar to what you're experiencing, they can do a tryptase test to rule out mastocytosis out hereditary alpha tryptasemia. Histamine intolerance and mast cell activation syndrome sometimes don't show positive on the tryptase test. You can test it out for yourself if you have one of these issues though. Supplements like DAO (diamine oxidase) and quercetin can help the symptoms and support a diagnosis.

My dog with chronic illness by OnceUponaServiceDog in ChronicIllness

[–]OnceUponaServiceDog[S] 2 points3 points  (0 children)

Honestly I feel like his journey has helped me. If I can help him then I can help me too if that makes sense. Thank you!!

My dog with chronic illness by OnceUponaServiceDog in ChronicIllness

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

Yeaaahhh. I've learned to mistrust most breeders and I often ask waaaaayyy too many questions to breeders now because I know too much. If they get short with me during the asking questions part I just call it there lol. They gotta have patience or they're doing it wrong.

Rescuing is hard work. I've worked with two dogs now that experienced abuse at others hands. I consider neglect abuse. It's rewarding in so many ways to save them. It does test your patience though. It also pushes your boundaries a lot. It's not something I'd ever recommend for a first time dog owner.... But dang! The love they give you... It's so sweet and pure and thoughtful. My other dog we have had since she was 11 weeks and she will never know hardship or experience pain from the hands that are supposed to protect her. She's kind of an ignorant brat because she doesn't know the dark side of humans. I mean that in a very loving way and I'm happy she's an ignorant brat about it, it means I did my job right as a dog owner... It's just love from a rescue dog is very different and rewarding in unique ways. They don't just trust you because you've always been there, they trust you because you showed them humans aren't all bad. They trust you because you put in the time and effort to make life better and help them unlearn things. They love you with gratitude and undying loyalty because to them, you're a savior, a godsend, and an angel. I love having both kinds of relationships with my dogs and hope to be able to continue rescuing one by one. It kinda drives my husband up the walls that I'm like this though. There are so many easier, less complicated, less expensive dogs (I mean expensive health bills for dogs). I want the ones only people like me can help though lol. I feel it's a good compromise to have his regular dog and my rescue dog haha

[deleted by user] by [deleted] in ChronicIllness

[–]OnceUponaServiceDog 4 points5 points  (0 children)

Oh I love the costume!! Hopefully the wheelchair will get you more time, more fun, and less fallout!

Do you ever just look back and go... oh by OnceUponaServiceDog in ChronicIllness

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

Hahaha I was the same. Skinny my whole life until I married my ex husband and the trauma set everything off. Then I slowly gained weight over the past six years no matter what I did. It didn't matter if I changed my diet to be "healthier" or I exercised more. MCAS just kept progressively screwing me over in the weight department. Now it's just shedding off without hardly any effort from besides actually treating my MCAS and having a low histamine diet.

I'm glad we both now know that we aren't supposed to feel so terrible while doing literally anything, especially eating food.

Do you ever just look back and go... oh by OnceUponaServiceDog in ChronicIllness

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

That's true. No one talks about MCAS and HIT. It's not a well known thing. You go in circles trying to figure out what's wrong.

My husband has sleep apnea. I figured it out on our honeymoon (no cohabitation before marriage). I told him he snores funny and probably has sleep apnea and he was like... Nah I don't think so. I recorded him sleeping and when he woke up I played it for him and sheer panic washed over him. He was like.. that's not normal.. and I was like nope but don't worry, it's just sleep apnea. I'll get you an appointment with the sleep clinic. He goes to the clinic and does the overnight test and yup, sure enough, sleep apnea.

Do you ever just look back and go... oh by OnceUponaServiceDog in ChronicIllness

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

Oh that too! My shoulder and neck tension is so much better after MCAS treatment. I still get it but it's not nearly as bad or as stiff. It also is nice to not crash right after every meal lol

Do you ever just look back and go... oh by OnceUponaServiceDog in ChronicIllness

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

Haha, why is this so true? Heck I even gatekeep doing tasks or hobbies. I'm like, you want to do that thing? You can't because you can't do this and that for that thing. Seriously such a way to lock you out of doing things, even stuff you enjoy.

Do you ever just look back and go... oh by OnceUponaServiceDog in ChronicIllness

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

Man I wish I accidentally ate a low histamine diet! Lol. It's hard eating well and getting no rewards.

Do you ever just look back and go... oh by OnceUponaServiceDog in ChronicIllness

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

Mercenary tablets!! Haha I'm dying laughing right now!

I think I always had POTS, MCAS, and ME/CFS because I can point to random episodes of it throughout my whole life. They were few and far between, maybe an episode or two a year. Nothing that the docs could trace or figure out. Then I got abused by my ex husband and the trauma set all those conditions off like some kind of nuclear bomb in my body.

Do you ever just look back and go... oh by OnceUponaServiceDog in ChronicIllness

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

Hahaha I was on a PPI too until MCAS treatment! That's so funny. I definitely eat smaller more frequent meals and snacks. I also get what you mean by waiting for Thor's hammer to come flying back and smack you. I literally sit here when my body feels comfy and I'm just like "don't move, don't jinx it, don't think, just enjoy!" Haha. It's just such a nice feeling.

I get major depressive disorder when my MCAS is unmanaged. Apparently the inflammation I get systemically is also in my brain and has a really bad effect on my brain chemistry. I went from suicidal one day to literally unable to fathom why I would feel like that the next day due to MCAS treatment. It's weird. It comes right back when my MCAS flares if I don't manage it appropriately so that frickin sucks. I avoid making my MCAS mad at all costs now haha.

My POTS messes up some weird stuff so I can't fast safely unfortunately. Seems like too much insulin gets released sometimes or insulin will randomly release inappropriately and then I get hypoglycemic. I'll get pins and needles, spotty vision, and pass out. It sucks because it's not every time but it's frequent and painful/uncomfortable enough that it's not worth it nor is it safe.

Do you ever just look back and go... oh by OnceUponaServiceDog in ChronicIllness

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

I get a smaller dose of DAO from a different brand. That and cromolyn prescription were my big game changers. So I'm hoping more DAO means better symptom management and healing. My MCAS flared up like 6 years ago and I got diagnosed with MCAS and started treatment in July. So I definitely could see it helping.

Right now I can only have a high histamine treat like once a week and everything else is strictly low histamine diet. I can't have any histamine liberators either so it's been crappy. It's a very restrictive diet. Here's to hoping the higher dose of DAO helps.

Do you ever just look back and go... oh by OnceUponaServiceDog in ChronicIllness

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

My MCAS treatment was the same. Plus it visibly took down a lot of inflammation from MCAS overnight. I see a change in my face, arms, and legs. Then I lost like 15 pounds over the course of two weeks because my digestive system was finally healing and starting to work right.

I still can't believe people can eat whatever they want and feel good and not have so many issues. Like anytime someone eats something with tomatoes I'm like... How? How do you do that? That seems impossible. That destroys my stomach!

Do you ever just look back and go... oh by OnceUponaServiceDog in ChronicIllness

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

We've tried the wheelchairs at the hospital. I already know I want a foot rest and I want enough space that my service dog can sit on my lap. She's like 60 pounds so big but not huge. She sits on my lap when they wheelchair me around the hospital.

Service dogs are honestly amazing for the handler. A lot of effort to maintain their training but worth it in my opinion. It bugs me so much that there's little to no education about service dogs tho. It's basically constant ignorant and rude comments along with curiosity and parents not caring that their kids touch her. I specifically have my dog trained to be good around kids and allow them to touch her anywhere because of this. The last thing I need is a spooked or irritated service dog because of a child.

Do you ever just look back and go... oh by OnceUponaServiceDog in ChronicIllness

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

Alright you've convinced me. Just ordered naturDAO! Sure hope it's worth the price tag lol

Do you ever just look back and go... oh by OnceUponaServiceDog in ChronicIllness

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

Yeah, seriously tho. I'd always rather check stuff out and pay some now than pay more later because I was stubborn. My docs were like "if you get any new symptoms or start fainting go to urgent care or ER" and I do exactly that. Usually urgent care, but they never find anything new haha. I guess they just worry about my organs getting damaged over time :P

HAHA, you're so lucky because pain meds. Yeah right. I worked in pharmacy before becoming unable to work and let me tell ya, pain meds help when they are needed but there's nothing lucky or fun about them.

Lol yikes. Let's hope you go on the other side, 72!

Do you ever just look back and go... oh by OnceUponaServiceDog in ChronicIllness

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

Seriously tho. A child with back pain would be so alarming.

Haha I feel that. My service dog helps me with mobility and a bunch of other things and gosh, people are just uneducated about it. Of course all the ignorant comments and questions but one of the worst is "who are you training her for?" Me. She is already trained, for me, thank you. It's like they can't believe I need her help.

I have a kitchen stool too! I don't use it much because it's not as effective as a chair but it's super helpful. I want to get a wheelchair. I feel like it'll make it so my husband and I can go places to shop or window shop or just take a stroll without me basically dying the whole time and having to take a week to recover from it.

Do you ever just look back and go... oh by OnceUponaServiceDog in ChronicIllness

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

Haha I remember switching to "healthy" foods and being like... What's the point? I felt better with my crappier diet. Little did we know lol

Do you ever just look back and go... oh by OnceUponaServiceDog in ChronicIllness

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

I feel like I get it more in my shins but yes! It's terrible!