Berrie Lee
Patient
Last on 16 months ago
144 points.
Guru

Berrie Lee

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Tell us about your experience with/connection to Lupus

“In 1960 I developed severe Deep Venous Thrombophlebitus after my son's birth.  I was 18....now at age 67, I continue to battle with what turned out to be ANTIPHOSPHOLIPID ANTIBODY SYNDROME and SLE (LUPUS).  Little was known about these diseases.  My coagulation disorders include every coagulation problem one could test...”

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  • roselove1986

    Hlo welcome to my love,
    How are you today i hope you are okey.also my name is Miss roseline,i saw your profile at
    (/www.wearelupus.org) I have interest on you,i would also like to know more of whom you are and i want you to send me email on my email address (roselinembaye@yahoo.co.uk)so i can give you my picture for you to know whom l am.here is my email address believe we can move from here.i am waiting for your mail to my email address above,Remeber the distance or colour does not matter but love matters alot in life,
    yours friendly roseline.
    (roselinembaye@yahoo.co.uk)

    12 months ago

  • Berrie Lee

    Melissa:  Sorry for delay in response; been on total ovewhelm and still am......you're at top of my list.....don't know if I told you about my sudden hearing loss and ringing in ears (horrid)....my hearing now requires hearing aids....it was fine until, BOOOOOM, it shut down about 4 wks. ago.  I'm devastated and have done tons of reserch, but it's very complicated & most docs know nothing about Antiphospohid Lipid Antibody Syndome (APS) which is have bad bad bad with the Lupus.



    So, I'll be in touch soon.......one thing I wanted to say sooner than later is that I'm sure that you need to get a good doctors, or at least a much better one....you have the awful problems we all have on that front.....I think your medical treatment has been insufficient but I don't know how to remedy cuz I have the s ame problems.  Horrific problems with docs.  They are ALL IDIOTS after 40 plus years of learning that.  They get worse.  My HUGE appt. last Wed. that I'd been waiting for for 6 weeks, fizzled cuz we were TEN Minutes LATE and the doctor LEFT......He actually left in under ten min cuz we were late (live far from him)......WHAT IS THE SUREST WAY TO CONTACT YOU????  I don't really understand.  Can you tell me???  I hope this get to you.....any hints would be divine.



    Don't give up hope though, get Mad.  We got a fucked up deal and we should/can be mad.  Some of events in last week wwere devasting (like family stuff & their apathy & pathetic help (non help) and refusal after all these yrs. to recognize how sick I am.  I' sure you have the same crap.  Feel free to write or vent......I'm here, just a little shut down, whic is not how I usually am, but I never expected to become almost deaf suddenly, and NOBODY GETS how horrid it is affecting me, even husband.  Be brave and find something really interesting to study tomorrow.....ANYTHING; become an expert on something, someone, and enjoy being a KNOW IT ALL sometimes.



    I know it's hard for you to assert yourself, but DO IT cuz you can.  You MUST protect yourself and don't take crap,  Be proud of being a WOMAN and that means SMARTER than any man on planet.



    My pep talk for today.  Hugz, Berrie  (Let me know you get this)

    21 months ago

  • Melissa

    Just thought I would stop by and say Hi!

     I hope you're having a good day... 

    (Did you get my email message back on here from the other day?)

    21 months ago

  • Melissa

    Thank you so much for your comment.. I want to think I'm a tough one or so I make myself believe. I hate feeling weak and I feel weak when I get to the point I whine about how I feel and here lately that seems to be a daily thing but I also have learned to hide this part of me. I only let the people really close to me see me like this bc I have had to many people made me feel bad for it or stop talking to me bc of it. Its just something alot of people don't understand and I know that. If I was a normal person my age I don't think I would understand my friend having these problems not that I would walk away and leave. Anywho Sorry!! I haven't had any sleep in almost 2 days now from the pain. I think its time to make myself crash for a while... I just wanted to write you and say Thank you very much... I will have to look into all the info you gave me..


    22 months ago

  • Tammy

    HELLO.. HOPE YOU HAVE BEEN HAVING A GREAT WEEK SO FAR!!
    HUGS FROM A NEW FRIEND:0)

    23 months ago