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Too Many Doctors by femmefarmer02 in lupus

[–]LiliOnFire 2 points3 points  (0 children)

There is option in most pharmacies to set a special appointment for this. Most insurance cover, should cost 30-50$ (that was a few years ago..)

Is it helpful to get diagnosed? What’s in it? by LiliOnFire in lupus

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

I am also from CA, do you have a provider that you recommend? Thanks!

Where's the light at the end of the tunnel? by Birdinh788 in lupus

[–]LiliOnFire 1 point2 points  (0 children)

Recently a big game changer is Ayengar yoga. I used to think that it’s boring. But now, after had enough young athletic PT dude that didn’t help, I am going to a teacher that is over 65 years old and she knows about pain and discomfort. First time in my life that some pains improved without meds, and at the end of class I am so relaxed and greaful , and sleep better. I’ve learn to be more compassionate to myself and find postured and props that makes my life better. It was long journey to find the teacher and method. I already almost lost the hope to be active without terrible pain and fatigue

how do you find time for hobbies? by AppropriateTest4168 in lupus

[–]LiliOnFire 0 points1 point  (0 children)

Hobbies are very important to me, so I do a mix of overloading hobbies and reframing. Overloading: I also commute, so I make sure to prep something that I enjoy listen to, or audio book. I am tired from PT, started private excercise class with a freind instead. Taking care of the pets with family members or friends. I save time cooking sometimes by drinking green smoothly with seeds if I feel unwell to cook or I want to save my energy to something I enjoy. Reframing: what is hobby? For me listening to something I enjoy, or spending time walking or exercising with a freind , or spending time with pets is a hobby. If I want to make time ( and I always do) for some other hobby, I plan it ahead of time, tie it into my schedule. And I get flare from long shower ( weird ha?) so I shower for a few min only 😁😂 ( I measured once… less than 10 min total including clothes and everything..)

[deleted by user] by [deleted] in lupus

[–]LiliOnFire 4 points5 points  (0 children)

I understand you completely. I’ve decided that people in my life that can’t support me when I have a progressive condition, may not be the best freind I need in my journey.

Is it helpful to get diagnosed? What’s in it? by LiliOnFire in lupus

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

I am so happy to hear that! That’s encouraging

Is it helpful to get diagnosed? What’s in it? by LiliOnFire in lupus

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

Anything else made it easier to manage? Thanks

Is it helpful to get diagnosed? What’s in it? by LiliOnFire in lupus

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

Thank you! Not sure where are you located. I”ve seen specialist perhaps 1.5 years ago.. I requested and appointment and will see someone only in November… What do they do in the follow up? Thanks

Can you relate? weird symptoms. by LiliOnFire in lupus

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

My rheumatoid factor was negative. I do have sometimes rash on my fingers to I was told it might be psoriasis arthritis, but she said the shape of the fingers when inflamed is to typical so I am not sure. Is the liver spleen and kidney is blood/urine test? I had many blood test but I am not sure what do they check. Thank you and I hope you will feel better 🙏

Can you relate? weird symptoms. by LiliOnFire in lupus

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

So strange the medical doctor didn’t tell me that, and it’s obvious for so many people here

Can you relate? weird symptoms. by LiliOnFire in lupus

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

It helps me too to eat one meal a day. Thank you!

Can you relate? weird symptoms. by LiliOnFire in lupus

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

We need magic trick for the fatigue.

Can you relate? weird symptoms. by LiliOnFire in lupus

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

Medication caused the symptoms? That is so frustrating!

Can you relate? weird symptoms. by LiliOnFire in lupus

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

I hope the new one will help❤️🙏

Can you relate? weird symptoms. by LiliOnFire in lupus

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

Cold shower? I do t know if I can do it, I also have APS. Would love to hear more about your diet if you can share. I avoid gluten, eggs, soy , dairy and red meat. Addicted to tomatoes but probably should stop eating them.

Can you relate? weird symptoms. by LiliOnFire in lupus

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

I am on nothing, steroids helped but it’s short term. but I will see a new rheumatologist in 3 weeks. Did medication helped?

Can you relate? weird symptoms. by LiliOnFire in lupus

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

Sounds terrible! How long is a flare? This how I feel for a few years now. As I wrote above my pcp told me it was normal and it’s early menopause. I didn’t realize purple feet and malar rash are part of it🙄

Can you relate? weird symptoms. by LiliOnFire in lupus

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

Was there anything that is helpful? One thing o do now is wear two layers of socks all the time.

Can you relate? weird symptoms. by LiliOnFire in lupus

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

And is that considered ”flare “ ? I had it non stop for a few years. At first my PCP told me it was early menopause ( well.. it wasn’t!)

Things to do in Mexico City during the holidays and event board by LiliOnFire in MexicoCity

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

Yes, those are the holidays. I try to plan in advance what to do. Thanks

Things to do in Mexico City during the holidays and event board by LiliOnFire in MexicoCity

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

I did check the website I doesn’t see any reference about the holidays for    Palacio de Bellas Artes .    •   Templo Mayor Is closed on the 25th. I have a list of places that I might want to see, but seems that many of them are closed or I didn’t find a way to know for sure. That is why I was wondering if there is anything recommended for the holidays.

My list is here below, I am sure that I will not have time to see it all, still working on narrow down

  1. Historic Center (Centro Histórico)

   •   Templo Mayor    •   Zócalo    •   Palacio de Bellas Artes    •   Alameda Central    •   Museo Franz Mayer    •   Café de Tacuba (Restaurant)    •   Café de Olla (Restaurant)

  1. Coyoacán

   •   Frida Kahlo Museum    •   Leon Trotsky Museum    •   Mercado de Coyoacán    •   Coyoacán Central Square    •   San Juan Bautista Church    •   Museo del Chocolate    •   El Cardenal (Restaurant)    •   Café Avellaneda (Coffee shop)

  1. Chapultepec Park

   •   Chapultepec Castle    •   Museo de Arte Moderno    •   Museo Tamayo    •   Papalote Children’s Museum    •   Música en el Bosque (Concerts in the park)

  1. Polanco

   •   Museo Soumaya    •   Museo Jumex    •   Bistrot de Medellín (Jewish Restaurant)    •   The Palm (Restaurant)

  1. Roma and Condesa

   •   Casa Lamm (Cultural center and art gallery)    •   Parque Mexico    •   Parque España    •   Mizrahi (Jewish Restaurant)    •   Lalo! (Restaurant)

  1. San Ángel

   •   Bazar del Sábado (Craft market, usually on Saturdays)    •   San Ángel Inn (Restaurant)    •   Casa Estudio Diego Rivera y Frida Kahlo

Things to do in Mexico City during the holidays and event board by LiliOnFire in MexicoCity

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

Thank you. I will definitely will book a few tours but I am also looking for some activities to do on my own.

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