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Life With Lupus

How do you explain to people what Lupus is and what it means


#21

Aww Melissa, You just made me tear up, honestly. I also am humbled by this whole experience and having all of you unique & wonderful individuals with such warm hearts & open minds to listen to what I say. I sometimes ramble on and on, and instead of hearing the “OK, we get it” from friends or even loved ones, we here in this lil’ family of ours are not judged, we are supported & understood. I also check here first thing , throughout my day & before I close my eyes for the night…To think we are all so many miles from one another, I feel as if we are all on Wisteria Lane on Desperate Houswives, LOL, except we don’t meet up for card games and drink wine, although that would be pretty damn cool, right?! LOL…I am grateful for all of you, and this site is becoming a story of “US”, and what our lives are like and all of our trials and tribulations, and to me it is one of the most beautiful stories I have ever read. You all are in my thoughts & prayers forever! Thank u all for being YOU! {{{{HUGS}}}}} Suzie :0) Xoxoxoxo P.S. As an inspiring writer of poetry, I have just envisioned a book to start composing “Suzie’s Lil’ Lupus Family”, what do ya think? Should I give it a shot!!! :slight_smile: I know it will have some pretty cool characters in it, that is for sure! :slight_smile:


#22

Suzie…Go for it!!! ‘Suzie’s Lil Lupus Family’… It’s got to be a winner :wink: x


#23

Personally, I would love to see what type of fictional story you come up with…you got my support chickie!


#24

Thanks Girls! I love that I have your confidence and support....It is an idea that I def. keep bringing up in this mind of mine. All I know is I have so many awesome characters to work with! You are the BEST! {{{{HUGS}}}}

Suzie :0)


#25

Hi Suzie! I think you should write your book. I like your comparison to the House Wifes.LOL! I am so thankful that i found ya’ll. I don’t have many people to talk to. My family loves me and takes good care of me but i have had Lupus for 32years and they are so use to me having pain or othwr problems that it does not phase them anymore. So i am glad to have someone to talk to about different Problems that come about. And i am glad to talk to someone that understands.

Suzie D. said:

Aww Melissa, You just made me tear up, honestly. I also am humbled by this whole experience and having all of you unique & wonderful individuals with such warm hearts & open minds to listen to what I say. I sometimes ramble on and on, and instead of hearing the “OK, we get it” from friends or even loved ones, we here in this lil’ family of ours are not judged, we are supported & understood. I also check here first thing , throughout my day & before I close my eyes for the night…To think we are all so many miles from one another, I feel as if we are all on Wisteria Lane on Desperate Houswives, LOL, except we don’t meet up for card games and drink wine, although that would be pretty damn cool, right?! LOL…I am grateful for all of you, and this site is becoming a story of “US”, and what our lives are like and all of our trials and tribulations, and to me it is one of the most beautiful stories I have ever read. You all are in my thoughts & prayers forever! Thank u all for being YOU! {{{{HUGS}}}}} Suzie :0) Xoxoxoxo P.S. As an inspiring writer of poetry, I have just envisioned a book to start composing “Suzie’s Lil’ Lupus Family”, what do ya think? Should I give it a shot!!! :slight_smile: I know it will have some pretty cool characters in it, that is for sure! :slight_smile:

#26

Hi Kim, Thanks for the confidence & support. I am off to the clinic tomm. finally for much overdue bloodwork & treatment to actually see what is wreaking so much havoc on my body. I def. need to focus on that right this minute, but my passion is that I absolutley love to write, not only poetry, but in my “bucket list” so to speak I am heading to my bday July 13th and it is a milestone for me, I will be 35. So i do really want to eventually tell a story of what has become of life with lupus, between the childhood I had growing up with my Awesome Mom suffering from it, to now a mom myself of 3 sons dealing with it’s effects! Also of all of you, who have so many unique stories of your own and range so widely from one spectrum to the other… it is a story I am sure people would want to hear and something alot can learn from, so it will sit in my mind until I actually get the time, strength & courage to do it. We are all teaching one another ways to cope, we have become friends that we know regardless, will support and not judge each other, it is a beautiful story unfolding and I am sure that you all do agree with me on that! Thank you for simply being you, and the same goes for each and everyone of you! Have a Great day! Be Well, Suzie :0)


#27

Suzie…

I think this is a marvelous idea. I love the idea that you have dubbed this site, LWL.org, as your "Little Lupus Family". If it makes you happy then go for it! LOL… it may be a work in progress for awhile with your munchkins and life. Three little men is a more than full time job, but a farm too and lupus. Go for it GF! I think it would be a best seller and would love to see what you come up with!

Writing is one of those things I enjoyed greatly. I know I have also thought of doing a non fictional book about life, lupus included. Just never put my mind to it I guess. I have been more of the book worm than writer in the last few years, at least. So to see someone else that I actually know put together their thoughts sounds great!

I hope tomorrow goes well for you and you actually get some tests, but moreover attention and answers at the clinic. I hold out with good thoughts for you tomorrow.

Be Blessed…

Melissa


#28

Thanks so much melissa, It means allot to me that you have faith in me! I hope things go very well tomm. and that i am not looked at as if I have “3” heads, LOL. We have all been looked at like that at least once, I am sure, lol…Sad, but true, right? Anyway, my life is a hectic one, but it def. keeps me on the move which is a Godsent to be honest, that is what I focus on and thrive for! Be Well, TTYS, Suzie :0) XOxoxoxo

M. D. Callender said:

Suzie…

I think this is a marvelous idea. I love the idea that you have dubbed this site, LWL.org, as your "Little Lupus Family". If it makes you happy then go for it! LOL… it may be a work in progress for awhile with your munchkins and life. Three little men is a more than full time job, but a farm too and lupus. Go for it GF! I think it would be a best seller and would love to see what you come up with!

Writing is one of those things I enjoyed greatly. I know I have also thought of doing a non fictional book about life, lupus included. Just never put my mind to it I guess. I have been more of the book worm than writer in the last few years, at least. So to see someone else that I actually know put together their thoughts sounds great!

I hope tomorrow goes well for you and you actually get some tests, but moreover attention and answers at the clinic. I hold out with good thoughts for you tomorrow.

Be Blessed…

Melissa


#29

For adults I found that telling them “Its the opposite of AIDS. Instead of my immune system not working, it works so well it hurts me.”