Friendships/Camaraderie

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Comments

  • meyati
    meyati Member Posts: 308
    edited June 2020
    legaljen-I didn't mean that you are bossy and snarky. I am the one with that tendency, especially if I'm not feeling good. Sometimes people that I really like tell me to back off. Because they are so supportive, I do listen to them- apologize and take a WhatNext holiday. This gives me a chance to be more centered.

    I will admit that we've had some really opinionated members on the crabby side.. Sometimes that is because they were near their end of time or going through a rugged time. You know that Greg is always kind, gracious, and supportive. I really admire him, and I try to be more like him.

    I wasn't going to post on your page to complain, not to tell you anything one way or the other. I just wanted to chat a bit, and ask how you are doing with everything going on.
  • Carool
    Carool Member Posts: 787
    edited June 2020
    @beachbum5817, he sure did!
  • legaljen1969
    legaljen1969 Member Posts: 763
    edited June 2020
    @meyati. I hope you can get to the place where you can post a message to me. If not, maybe I can post to you and you can reply.
  • meyati
    meyati Member Posts: 308
    edited June 2020
    Sounds like a plan
  • JustGrateful
    JustGrateful Member Posts: 72
    edited June 2020
    I found the site through facebook and just dropped by to see what it was about. I read a lot of posts but don't post too much myself. But, when I have a question about something I usually get the answers and help I need. I'm glad I found it.
  • legaljen1969
    legaljen1969 Member Posts: 763
    edited June 2020
    JustGrateful, we are glad you found us too. Like you said, you don't ask a lot of questions but the ones you ask are well thought out. And your posts are always kind and encouraging. Keep us posted on what's going on. Lots of people care about you.
  • petieagnor
    petieagnor Member Posts: 110
    edited June 2020
    Gosh! You all are all over the place & covered some real important ground. My insurance co. told me about WhatNext. You read right. I love this site. I'm able to chime in when I'm up for it. I do learn to ask questions when I want to know something. Right now, I'm very stable. It's comforting to know that there are people out there just like me with MBC. HIPPA won't let the medical profession share anything. Sad, but good.
  • meyati
    meyati Member Posts: 308
    edited June 2020
    HIPPA-don't get me going-I spent a good 11 months with a mystery disease. I went to a hematologist-who came close-body over reacting and attacking itself.. ENT thought I had a rare cancer-boggy ears, running nose-lots of mucous and swollen throat. -- GI wanted me to take meds that put me in the ER from bad dehydration-yes I had stomach problems too. Dermatologist that didn't recognize what I had on my face--small hives, infection under my skin, swelled lips big time, swelled eyelids. Now my ophthalmologist-she cried and hugged me.(best medicine ever0. It took the dermatologist working with an allergist to crack the code for treatment.

    The lab- biggest in NM-won't share the lab results with other doctors- and it won't allow all of the results to be in my electronic medical record. I honestly had the very same tests run within 24 hours, and I have only 1 vein that's accessible. I went in and had Bun-Creatinine, CBC, thyroid, and so on. The next day I had stroke symptoms--and the ER ran the very same tests over again.

    I needed an antibiotic for a sinus infection of 2 weeks. Medicare said that people in their late 70s couldn't be prescribed antibiotics, and I was prescribed Singular--in 4 days, I started becoming sick from that. It messed me up in many ways-and it makes me look like a street person that can't wash my face and might be infected.

    I hate HIPPA.

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