I really appreciate videos exactly like this. It makes me feels less alone, and that I’m not the only one experiencing this. Do you follow ‘Through the looking glass’ ? Her name is Daniela, and although she doesn’t have Lupus like us, she has very bad fibromyalgia (me too) and back problems, and mast cells and other stuff, and every now again she shows or at least speaks of, especially in some of the slightly older videos her pain. I understand exactly how you are feeling but I’m lucky my two girls are now in their 30’s, but I did get really bad when they were in primary school. Have had different problems since I was14 though. Like I said on Instagram, we really are twinning at the moment, winter is usually my better season but not this year. Anyways, that was a novel, hope we both start feeling more ‘normal’ soon. Take care mate, oh, and I mean it, thank you for posting this. ❤️

You are amazing. <3

I love how honest you are about everything. when someone is carrying a 😍Niceshopx😍 and you pass them on the street no one can tell whether is fake or real one because you cannot do this much analysis on it. what I hate about LV and why I stopped buying them is that many people assume your bag is fake when they pass you on the street. It's very annoying. one time a woman walked up to me and actually asked me if my bag was "real". after spending almost 2K on a bag and being asked that question was so offensive i stopped carrying them. People look more at the person carrying the bag and assume wrongly whether is real or fake. it is extremely annoying

I am sending you lots of healing love. Thank you so much for sharing you at your worst. We all think that we are the only ones that goes through this living with a chronic illness. Seeing someone else suffer assures me that I am not a whimp and that having a chronic illness is a very difficult life to live. It is hard enough to cope with the everyday constant pain then to escalate to another level of pain an sickness is an horrific experience. I pray that the flare will not last long and you will be back to your base level soon. Thanks again for sharing your experience!

Rightttt!! I take 6 different eye drops and 1 Immunosuppressive but they are adding another one

Gorgeous

I know this very well

Big Hugs To You Girl

Im on Immunosuppressive meds are you?

❤But look how Beautiful you look

I wish I could talk to you😢❤❤❤❤ I see A Big Rheumatologist tomm!

We don’t have thred up here, unfortunately. Seen it on lots of different videos though. I really like your camp print shorts. I’ve put on so much weight since my fella has been home since November, I’m trying to do something about it but between old age and limited movement, geez it’s hard. ( I mean a lot of weight).

Same, I'm 13 and a hospital is like a 2nd home 😢because my stomach

I sweat so bad and I buy ‘clinical’ deodorants, I always stock up when they’re half price but the prices are astronomical. Us girls in this house are notebook and pen junkies, can’t help ourselves, my oldest always buys me at least one for Christmas or birthday and they are gorgeous, I doubt I’ll ever use them 😅 (she’s 35). I love your hair, I look like the crazy cat lady from the simpsons, 😂. Have a good one.

girll i never go outside and i go to the beach one time all the sun screen in the world my legs have a interesting rash now

Catching up, hoping your mouth sores and ulcers are easing up (though as a fellow lupie, probably doubtful). We used to have a Doberman, she was such a beautiful, special dog, I love them. Glad you and your daughter had some pampering xxx

Hi There, I was analysing your KZfaq channel. Great. Your Content is fantastic, But your video optimization section area is not perfectly up to date. Out of 100 that score very low, That’s why your video is not reaching out to people, and you have very few subscribers, views , likes, watch time and comments. I think your KZfaq channel will make your dream come true. If you can fix these problems your channel will grow very fast & definitely your videos will get more views. Can I help you ? Thank You.

I'm in West Tennessee and the heat and especially the humidity is horrible! I don't have a Dr in the area that treats pots or disautonomia. I live by myself and have to stay in the ac as much as possible. I'm thinking about moving north just to be able to function.

If you have a beta blocker you should be able to take at least a half of it to help you slow your heart rate down but not too much when you're laying down. Also try inhaling for 4 seconds can exhaling for 8. This will activate your parasympathetic nervous system and take you out of that fight or flight state. Hope this helps. Take care.❤️ I take propranolol and Ativan..i take HALF of each dosage and it stops the shortness of breath and the anxiety WHICH ALSO CAUSES THE FATIGUE because you are revved up. I take the beta blocker in the morning or early afternoon while im up doing things and it doesn't affect my blood pressure.

Softhugs ❤❤❤

Trying to catch up but glad you had fun at the bbq. One thing I’ve always wondered and google isn’t helpful, what is creamer? We don’t have it here. I know it’s flavoured and goes in your coffee but is it milk, or plant milk, I’ve seen so many flavours, it’s mind boggling 😂. I actually don’t like coffee (love the smell), but my eldest is very, um, particular about her coffee as a lot of people are, there is a strong coffee culture here which is why Starbucks pretty much had to shut up shop here, not many people liked it apparently. Today in things you didn’t need to know 😊

I am so happy that you are feeling a little better. It feels so good doesn’t it. I am 76 yr old and have very few good days anymore. My energy level is extremely low. This Sunday will be 1 mo since I have gone out and done something. The last day was Mothers Day and had a wonderful day. It’s just so hard. I cook dishes like soups and stews which I have enough for about 4 5 meals. My daughter sends a cleaning lady every other week to do the heavier work in the house. Believe me it has not gotten easier for me over the years. I send love to all of you warriors

You grabbed some good stuff, love your journal, bees are so cute. Sunglasses are great too, my dr told me to get the wrap around ones because of lupus, haven’t yet, it’s been about 10 years. I’ve always liked your bracelet too, well all your jewellery actually. Have a good week mate.

My granddaughter is 16 and has been playing volleyball for a few years and loves it

I say that Im hard to love ALL the time.

It's OK to feel the way you do and understandable. You are wonderful ❤❤❤❤

I really enjoy your videos (I think I say that every time, here and on instagram) but I do, I like the reality, I like that you make me feel less alone, thank you so much for that.

One thing that helps with keeping my home decent is to be a minimalist. I don’t have a lot of stuff so I don’t have clutter. It helps me a lot in lee things decent looking. Please take care all of you warriors. Thanks again for being vulnerable. Sending lots of love

I can do all of these but rheumatologist said nothing wrong

I appreciate you so much that you can be vulnerable. It shows your strength. Don’t ever feel bad about it. I understand completely what you are going through. You always express it so much better than I am able to. I am sure other viewers feel the same way. It is so difficult to sort it all out. Do you have any tricks or tips to putting easy and quick meals together? Would you like to show us how to prepare a meal? Just a thought. Many viewers may be going through the horror of applying for disability. Any advice for them? How do you grocery shop. How do you keep a decently clean home? I will think of more and share. Thank you for being so real

I’m embarrassed to admit the last time I had an everything shower😅 like you, I get plenty of mouth ulcers etc, thank you lupus, so when that has a flare up I get the worst boils in all my lymph nodes, so , so many (tmi?, sorry I’m old I have no shame left 😂). I hope the medicine has started working better for ya. Hope you’re having a nice weekend.

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Thoroughly enjoyed this video, thank you. The medication I will avoid (if possible) and have for the last year or so, is Prednisone, we have a love hate relationship. Anyways, hope you have a good week, no, a wonderful week😊

🎯 ❤ 🎯

I live in Arizona too! We get long summers and its so awful. My husband had to take over with grocery shopping and errands because im house bound. It got to the point where he bought us a rv to get some nicer weather up in prescott for some breaks from all day flaming sun😢 I feel you girl

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I had the exact same thing happen with a word. It is soooooo frustrating ! It happens often. Thanks for showing how brain fog affects us. ❤️‍🩹

I always enjoy any videos you put out, I’m in awe of anyone with illness who can manage that. ❤

Nice to see you. Im getting alot of tummy issues too....ongoing over a year. Iv had lots of tests, scans etc and thankfully the results are normal. Im now trying Dairy free. X

Thank you 💗

What color is this longchamp?

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Been feeling this a little more than I normally do, needed the connection 💕💎

❤

I am so happy to know your procedure went smoothly! 🥺 I do want to ask further questions privately if that's ok, do you have a social media platform I can contact you on if possible? 🥺

💕 Can't find a pink bow, so sending you hearts... luv you and all your multitools, you're so ready for anything!

I am so very tired of living with lupus. Really, it does not stop. One virus after another and it gets old. I always self sabotage and “act normal” just to feel normal. I totally understand but no one without lupus really gets it including spouses.😞

Our God is a very present help in times of need. Thank you for sharing ❤ I'd like to dedicate this song to you Josh Garrels- farther along

Beautiful colour....love your style ❤

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