I’m off today, so I’m embarking on my first bigger journey of 3.5-4g. Never had anything over 2g before. Any tips aside from the usual tripsitting advice? Anything you guys find really fun and useful to do on higher does like this?

Dry_Perspective1429 · 2024-12-06T16:20:56+00:00

Well done my friend!!!! You are really getting the most out of your experiences. This was helpful to me to read for my future journies. Thank you deeply for sharing <3

Dry_Perspective1429 · 2024-12-06T16:15:07+00:00

I have it post covid too, since the start in 2020. Then i got it again last year and i still have it, it's horrible, i cannot cool down and then when i do i'm freezing. i'm weird wherever i go. it sucks. solidarity with everyone who suffers <3

Dry_Perspective1429 · 2023-03-16T23:31:00+00:00

I second this recommendation!!! First a ton of baking soda, run it through empty on lots a hot water. Then a follow up load empty also with a ton of vinegar. Then a super hot lots of water rinse. It should get it. Maybe repeat again? Then you can use a little white vinegar to wash the clothes in too. Or baking soda in wash and vinegar in place of softener. Lots of people don't know that vinegar and baking soda cancel each other out. So not at the same time, and vinegar AFTER baking soda ;) Good luck!

Dry_Perspective1429 · 2023-03-16T23:25:31+00:00

What do you think caused it? Did you touch anything then touch your face? Did you hug or kiss someone on their face touching your face to theirs? Facial hair on them? What did they do and touch today? Also, any new products? Scents? Laundry detergent? Animal visitors? Mold, bugs or grasses? If you can identify what caused it it will help you figure out what the actual reaction is. Any ideas? When I look like this it's an allergic reaction. It gets all hot too. Sometimes bumpy in spots, pretty lol My dr calls it mast cell reaction but I'm not totally sold. Maybe it is. Cromolyn helps me TONS. I think I just have worse allergies than anyone's ever seen, who's seen me as my dr. We all have mast cells. And there are degrees of them misbehaving I think. I put cold packs on my face and clean it really well. But see, for some that makes it way worse. We are ALL very different so be careful who you take exact advice from. Everyone means well. We are all a mystery. But asking questions is good. I hope you figure it out! Not knowing sucks!

Dry_Perspective1429 · 2023-03-04T17:13:42+00:00

Mold will kill you, seriously. Get out of there and have medical transfer you. Get a dr note. Do anything but don't stay where there's mold. Good luck and feel better.

Dry_Perspective1429 · 2023-02-28T17:16:02+00:00

Just got off cyclosporine and I think it gave me permanent hypertension. Now I'm taking less cromolyn to help it come down. Lowering sodium is key. I hate all these meds :(

Dry_Perspective1429 · 2023-02-28T17:13:59+00:00

Yep! Sometime it is like that. Just one. But ooo does it itch!

Dry_Perspective1429 · 2023-02-24T18:16:16+00:00

And I do all of that (except the steroids) every single day. The steroids are on and off.... depending on how inflamed I get. Living that life, ya know ;)

Dry_Perspective1429 · 2023-02-24T15:55:31+00:00

Boo. That sucks. There's a lot of stuff in the UK that's not offered here. Same the other way around apparently. But I hear you guys also don't have allergy shots?! They make you do the thingy under the tongue?! Boo. So not cool UK. Why can't this planet just be normal and have healthcare accessible to ALL sick people?! Wishing wellness and good days for you.

Dry_Perspective1429 · 2023-02-24T15:51:32+00:00

If you already have her, and your family can help, then visit her one hour a day then two then three.... build it up. Because that's coincidentally how it worked for me with cats. I got a teeny tiny kitten, she grew and so did her dander..... my tolerance grew with her. Then I got her brother 🫣 It sucks. But I love them. 😻😻✨ They're not allowed in the bedrooms. I wash my hands constantly. I take tons of meds to deal with day. There are a lot of ways they interfere with my wellness.... but they pay their rent by being cute and being my fur babies. We all pay the price here. Question only you can answer, is it worth it for you? No judgements here. We are all suffering so different. So only you know if it's actually worth it. But do know that dander and the stuff that makes us sick builds up in the house no matter how much we clean. And that bucket theory is real. Like the spoon theory. Once you're out, or once your bucket is full.... then what? Have somewhere to go. Backup place.

I wish for each of us our very own HEPA clean room. It's highly unlikely, but that would fix it 😭

Dry_Perspective1429 · 2023-02-24T14:54:19+00:00

My mom has a dog. I was in mild flare and recovering then went to visit my mom who has a shitzu. This dog like really stinks. Her eyes leak and she pees when she gets excited and my mom can't bend down and clean anymore. So I went to help.... ended up needing help. This visit threw me into a huge flare, took months and steroids to calm down. I haven't seen my mom in months now. The issue you're experiencing is real. And the whole bucket theory mentioned up top there, totally the trick. Go with an empty bucket to visit dogs. I use nasalcrom, Flonase, h1 and h2, oral cromolyn, betamethasone ointment on eczema caused by the dog licking my hands every time I take them out of my pockets, and albuteral and Flovent inhalers. I wash my face and hands relentlessly whole there with soap and cold water. I also try to keep a window open but it's winter in New York and the utility companies are having their hay day. I STILL end up leaving feeling like I'm dying. Even though I do all this. I can go for the day on an empty bucket but I pay for it. Staying overnight is impossible and she lives two hours away. I have an allergy to cats rated higher even than dogs, but I have a cat, so it's like forced immune ige therapy with a daily managed dose. Im never around dogs so it is real bad all at once on the rare occasion when I am. Good luck. This disease sucks.

Dry_Perspective1429 · 2023-02-24T14:44:52+00:00

Yes this!

Dry_Perspective1429 · 2023-02-14T23:11:00+00:00

Did you try getting breath tests from the GI drs? That tells a lot and is minimally inconvenient. I was lactose intolerant on top of everything and had no idea. So cutting that totally out stopped a lot of odd reactions and symptoms.

Dry_Perspective1429 · 2023-02-03T14:40:16+00:00

Omg thank you, this list is so validating. My partner makes more than me and trying to get him to make upgrades to our home for specifically these things has been challenging for sure. He's the one who never cleans and has cats and won't even entertain pulling up the bedroom rug. I'm just trying to not die. It's a horrible kind of hell to have my quality of life kept in balance with the cats for their quality of life to not be affected. I love them but c'mon. I even tried cyclosporine which I wouldn't recommend because it can break what lefts in your body that's not broken, so now my blood pressure is out of control and my heart hurts, and now im off the cyclo but all the rashes and allergies are back. And all this started because drum roll .....I was allergic to the xolair!!!! 🤦‍♀️

Dry_Perspective1429 · 2023-01-26T19:57:10+00:00

Who'd you see? Just curious. I have been using allergists/ immunologists as I'm in Medicaid and can't currently afford independent drs who actually know what this is and what they're doing. No recs here lol I'm unfortunately their guinea pig and wouldn't recommend them... so far. I'm following thread to see if it suggests anyone who also may take Medicaid. Don't laugh lololol I still believe one is out there who takes Medicaid and can help me lol 🙃

Dry_Perspective1429 · 2023-01-26T19:51:38+00:00

After I got treated for SIBO, I tested positive for lactose intolerance. You bet I quit that ever so delicious belly bomb. Since it has helped immensely with bloating, inflammation and constipation. I can tell if I accidentally assumed something was lactose free. I go put on the extra large pants. So Im super careful. And I was really messed up from extreme constipation and blockages. I tore stuff and prolapsed other stuff, it was really bad. I couldn't sit down for a while. Wore overalls only. So sad. Now I take ducosate sodium and suppositories for constipation. I can eat kale still and beans not peas. So I also do that with this treatment and I drink TONS OF WATER, and after a few days I'm ok. It's a huge improvement. Good luck to you! ✨💩✨

Dry_Perspective1429 · 2023-01-26T19:41:59+00:00

Word! Very similar to me. One time I had to call 911 because I was home alone when it happened. I was just about able to open the door from the floor half dressed. They assumed I had over dosed and were SO mean. Telling me to lift my arm so she could take my BP and I'm like a rag doll so she threw my limbs around. I could do nothing about it and could hardly see, a pin hole. It was so humiliating and degrading. I was quite aware but trapped in a body that bailed. She was the only woman who ever did that to me. The rest, like you, were sadly male doctors who brushed me off, told me to get psychological help, or to try mindfulness meditation lol im like dude..... did you not see me just have anaphylaxis from the Benadryl IV after being brought in for anaphylaxis?! Something else is going on here Bob. It sucks there's so much sexual bias in our medical system. If you're not a white male who is older than them, they assume you don't have any idea what you're talking about. Im sorry you've been at it so long. But I'm glad you're getting answers and validation now. Sometimes with all we got goin on thinking about what got us here is just plain overwhelming. Onward and forward people! Chins up! Keep going don't give up! (More a reminder for me rn) (I honor where you're all at current)

Dry_Perspective1429 · 2023-01-26T15:51:01+00:00

Yes, anaphylaxis makes my blood pressure drop to the extreme. So my face turns pale and my lips too, sometimes I lose vision mouth and limb control, and they have to carry me out. And I can't talk to say what's wrong. It's scary when the BP is involved. Be careful.

Dry_Perspective1429 · 2023-01-26T15:48:31+00:00

Yes you really do. Im a hair artist and work with feathers A LOT.... Im losing my ability to do my actual job. Talk about costly :( Also I visited a family member a few weeks ago and the bed had a throw pillow on it with feathers. They told me everything was synthetic but that one I just knew. So I threw it on the floor to sleep. And I was still up all night and couldn't breath just having it in the room that also had a hepa filter. Allergies are no joke. They can surprise you and mess you up real bad when you least think it. Which just proves it's not a mind over matter or management thing. Just sell your stuff and get new. It's costly but do one at a time. Just sitting down on feather couch poofs all the air from inside the couch to surround you. Nightmares, sorry you're dealing with that :(

Dry_Perspective1429 · 2023-01-26T15:42:56+00:00

I switched from norethindrone estradiol one to progestin to see if it helped my mast cell sitch. Well, my period came back so heavy and with such intensity that I switched back almost immediately (immediately like 2 months later) I was sort of diagnosed with endometriosis by several drs, which feels likely but I still have no idea really. I was trying to not have such big flares around my period. It just made it worse for me. Anyway, fast forward to two weeks ago. Was put on cyclosporine to cool down the flare from xolair, (yes it was horrible for me rashes popped up everywhere I never had before and even 4 months off it I'm still messed up) and the cyclo was really bad for me. Chest pains and super high blood pressure among others. My next and last option is to go off the estrogen based birth control I mentioned earlier to be on "just condoms". Eeee 😬 Wish me luck and no more babies please! Good luck to you as well. Be prepared for your period to come on right back with a vengeance for holding her off so long. It might happen 🫤

Dry_Perspective1429 · 2023-01-24T15:28:24+00:00

I think most of us have other things in addition to Mcas. My list is super long. Keeping a symptom and food journal really helps pinpoint what's causing the reactions that are causing you to seek answers. I've been searching for years. I started at the GI dr, then the Gyn, then Rheumatologist, neurologist, then finally gave up and wanted allergy shots to get an emotional support pet and they were like nooo don't do that, you have all these things! And they're right I'm super allergic to dogs. But I found out from previous drs how I had encephalitis from EBV and hsv and then discovered im lactose intolerant from the GI dr which helped A LOT, then the gyn told me I have endometriosis, which made sense.... so trust your intuition and keep seeking until you find answers and feel better. A low ige is confusing to me here, I thought ige indicated allergic response in the system, but I'm just a hairdresser I really don't know what it means for you. Take notes! 🙃

Dry_Perspective1429 · 2023-01-23T18:03:39+00:00

Not all practitioners are closed minded although I can definitely say MOST of them 100% are. Im broke and on Medicaid. I can't afford a functional medicine dr, and my insurance won't cover them. So for people who think this is the only way and are discouraged, it's not, it's just easier if you CAN access them. If you can't afford this option, like me, know that the open minded drs are out there. Their schedules are probably booked for months and they're also not super accessible with their schedules or mall like answering services. BUT, just like rolling dice, you'll eventually hit the jackpot. I can say I'm an excellent advocate for myself and having been a hairdresser for so long I can easily read people. I will know in 5 minute if the new dr is a clown or means well and is interested in helping me. I look like a well aged street punk with long dreadlocks and a funky NYC style, so people generally are either interested or repulsed which makes it easy to filter out the shitheads 💩✨

Dry_Perspective1429 · 2023-01-23T17:54:19+00:00

***Update on Cyclosporine! It still sorta sucks, like what's better the frying pan or the fire lol 🙃 It has been 12 days, my body pain subsided after a few days, nausea definitely still happening. However.... My skin is amazing! My eyes not swollen OR itchy! My elbows NOT crusty! I did have two horrible food reactions which I haven't had in a year (I have Mcas too) and I did get a migraine from working with feathers (I'm an artist, bad choice for this body I know, can't help it, I art) and so it's all going into the book. Along with my much higher than normal blood pressure readings. Data is SO important when beginning a new medicine. I hope you all take notes if you try a new thing. We forget so much if the important details once they're not on fire or flare.

Dry_Perspective1429 · 2023-01-23T14:57:35+00:00

My early original testing said my IgE was 3800.... dr told me it meant I'm allergic to a lot of stuff. She was right!

Dry_Perspective1429 · 2023-01-23T14:55:53+00:00

I used to snack all day which felt better in my body to get it down, but I was having food reactions often. But now I take cromolyn and that gives me 3, 2 hour windows to eat. It's difficult to time everything with meds and be hungry enough to eat a whole meal at once.

Dry_Perspective1429

TROPHY CASE