Saturday, January 16, 2010

Letting People Know

Called one of my cousins today to let her know about me. She was great. Offered to come from far away to spend the weekend with me and cook me yummy meals (she's a great cook!).

A number of other people already know, and they've all been amazing. My sisters, of course, know. As well, my closest friends have been there for me from the beginning, and their support has been amazing. They've sat with me at the doctor's, brought me meals, cooked for me, done my dishes, helped me with laundry, kept me company, talked, listened, and, probably most important of all, made me laugh.

What would I do without all of my lovely friends and family? They really are amazing.


  1. I am in the process of being diagnosed. The docs are still trying to figure out what is wrong w/ me . Im 99% sure I have RA or some form of arthritis . Have you come across people who treat your RA as "old people's arthritis" if that makes sense ? I have told a couple friends what is going on w/ me and they have made flipped comments like " HA the joys of getting old" And im like NO YOU IDIOTS this is not getting old ! Have you ever come across that if so how do you deal with that ? Again I have not been positively diagnosed yet. ( I go to the doc tomorrow )
    Here is my experience so far
    But just curious if you have come across that
    Thank you
    PS Love your blog !

  2. Hi Mindy,

    Thanks for checking out my blog – glad you like it!

    So sorry to hear you're not feeling well – I hope you get confirmation soon so you can just get going on treatment.

    Re how people reacted with me when I told them I had RA, for the most part, they've been really understanding. Some have offered up ideas about what works for people they know with RA, which I appreciate. Others just take in the info and move on. One old friend still hasn't said anything at all to me (which I find so bizarre). Other people think I'm fine and that nothing much was up since I never looked "sick." I was actually surprised to find out how many people I knew who knew others with RA.

    The only people who heard the word "arthritis" and thought "osteoarthritis" or "wear-and-tear" type arthritis were my aunt and my mum. I think one of my cousin's ended up explaining the difference to my aunt (who loves me dearly and whom I love dearly, but to be honest, I just wasn't going to get into explaining the difference to her myself, since English is her second language and blabbing on about autoimmune disease and stuff at a time when I was feeling crap wasn't something I was up for). As for my mum, she's at an age when she's very forgetful, and I've explained a number of times the fact that the types of arthritis we have are very different, and I think I'll have to keep explaining it to her...but that's fine. And to be honest, I really had no clue what RA was before I got it, so I'm absolutely fine explaining it to people and I'm not at all offended when someone doesn't know what it is or is confused about it – I can't blame others for not knowing something I didn't know either, and I'm all for education now that I do have it.

    I'll definitely be checking out your blog and I'm hoping that things work out for you. All I can say to you is that you're your own best advocate and you deserve the best treatment possible, so do your research and expect the best you can get! Keep in touch and let me know how you're doing, OK?

    :) Laurie

  3. Thanks Laurie, We have some things in common . I too have chronic migraines, I have since i was 11. I am on 200mg of Topmax 300mg of Wellbutrin and Imetrex for my migraines.
    When my symtpoms started I thought some of them were related to my Topamax. But they just got worse. I went to the doc today :
    (Copied this from my blog ) LOL
    I went to see my primary care doctor today and he was not much help about what is going on with me . He drew some blood and is probably going to end up sending me to a rhematolgist . He told me he does not think I have arthritis, however after a comment he made I have to say I think he does not know what the hell he's talking about. He told me something along the lines of " arthritis affects the toes and fingers,and other joints not the knees and feet " WHAT THE HELL ? Arthritis affects your JOINTS what the hell do you think a KNEE is ? Even I Know that.
    He also threw around things like " Soft tissue diseases like Sclaroderma" which if you know what that is , lets put it this way i would rather have RA than that shit !
    So anyway , my blood work should be back tomorrow and I am beyond frustrated at this point between 3 doctors no one know's what the hell is wrong w/ me !
    Thanks for your comments. I hope to get my results back tomorrow. I have a friend who is making me an appt w/ a rhemy on Thursday either way I need to see one !

  4. Hi Mindy,

    I saw this on your blog and have commented there. Hang in and keep pursuing an answer! :) L