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Saysusie
11-27-2001, 12:34 PM
Are you, or someone you know, suffering with Lupus? Have you lost a loved-one or a friend to Lupus? I lost my precious daughter, Lauri Amber Reinke-Diggs, on December 10, 1999. I know the stages; the disbelief, the anger at the medical profession, the betrayal of medications, the anguish, the grief, and especially the question - WHY?
If you would like to talk about your feelings, your fears, your questions or any topic at all, please post a message and I will respond

pinkjmf
08-08-2006, 01:09 PM
YOU ARE THE BEST !!!!!! The world is a better place because of people like you. Thanks[/quote]

Teresa
08-08-2006, 08:50 PM
Thank you for being so strong for all of us and just being there when we need you.

Saysusie
08-09-2006, 03:35 AM
Thank you both for your praises!!! I continue to devote myself to this forum especially for, and because of, folks like you :lol:

Again....Thank You

Much Love
Saysusie

hatlady
08-11-2006, 04:55 AM
{{Saysusie}}

Thank you so much for being here!

debann
08-12-2006, 09:05 AM
HI Saysusie, Your are so generous with your time and your knowledge. I knew you lost your dear daughter to lupus and I'm so sorry for that. I can only imagine your grief. I don't know much about you. Do you have lupus? Are you home full time to devote so much to this forum? Are you in the medical profession? Maybe this is common knowledge and I'm in the dark. Whatever the case thank you so much for being here for all of us. I wish you well, debann

Sunshine101
08-12-2006, 02:41 PM
Hear, hear Saysusie! Inquiring minds want to know! Fill us in, we want to know more about our fearless leader! Sunshine101

admin
08-19-2006, 02:44 AM
Saysuzie rocks.

Saysusie
08-20-2006, 07:24 AM
First and Foremost...Most Beloved Admin: Glad you made it home safely. It was wonderful to see you and seeing you only reminded me of how much I miss you! I have news about HDCRS...I will e-mail it to you!

To My friends here :lol:
Yes, I too have Lupus. I was diagnosed years before my daughter. However, as we all know, Lupus affects each of us differently. So, when she started exhibiting symptoms, they were nothing at all like mine, so I did not recognize them as Lupus symptoms. She and I searched the internet for a site, such as this one, that would answer questions, allow us to vent or just offer support....we found nothing. Also, as you all know, Lupus is very difficult to diagnose, so she was given several different diagnoses prior to the final one of Lupus (such as allergies, RA, etc.)
Anyway, my lupus has been downgraded to mild lupus and has been that way for years. I still have symptoms, but have to take very few meds to manage my disease. I still have flares and remissions, fatigue, joint pain, lupus migraines, sun sensitivity, etc. I also have FM, Raynaud's, IBS and other auto-immune disorders (like most of us!). However, I do well with lifestyle changes and precautions.
So, you can imagine my guilt about surviving this disease when my daughter did not!!! Her lupus virtually destroyed her organs, in particular, her heart which just stopped suddenly and unexpectedly!
I made a CD in honor of my daughter and in order to express what was in my heart. Our Beloved Administrator for this site is an accomplished musician who owned a recording studio where I live. He produced my CD (which can be purchased on-line at Songpeddler- my name is Carlotta Y Diggs) and offered to set up this site for me when I told him about my daughter and her struggle with Lupus (I am-and will be-eternally grateful to him for maintaining this site for all of us!) so that others would not have to go through what she and I went through in our quest for answers and support!


No, I do not work. So that does afford me lots of time to devote to this site. And I AM DEVOTED TO THIS SITE!!! I spend many, many hours researching information and answers. I am not in the medical field, I am just a diligent researcher :)
SO..that is the shortened, "Reader's Digest" version of my story. I truly appreciate all of your kind words and am so happy that you appreciate this site. This site is the very first place that I go to each and every morning and is the last thing that I do every night. I am lost without it because it is now such a big part of me and who I am!! So, I want to thank all of you for being here and for sharing yourselves! You are what makes this site a home and a family for others!!
Much Peace, Many Blessings and Love To Each And Every One Of You!!
Saysusie

browneyedgirl53
08-20-2006, 11:49 PM
Hi Saysusie,

I've been away from the site for awhile now.....and what a welcome site it was to read your post today. Reaching out for those of us who need to reach out but are afraid to, for so many reasons, either to ask for help or to research in fear of finding out what's next.....

This is quite a leap for me....especially as a post; I have been struggling with how fast my lupus has progressed....with kidney, heart, and brain involvement, I feel overwhelmed right now. I will admit it, I wandered off the past few weeks into an itty bitty pity party...and stayed too long.

I am on oral chemotherapy, etc. (35 pills a day) and am trying to understand this unpredictable visitor who has implanted itself in my body...and I have fought to do all I can, my body is weak, my heart is weary, and my soul is tired. My memory is going, I've been hospitalized for pericarditis in the last month (4 times this past year...crp levels of 7.5), my red cells are way down again, I've learned now that I am at level 4 of kidney failure.

My mom is my hero, she lives 2,000 miles away; we talk on the phone everyday. My mom has lost two sons (1 to MVA, 1 to lymphosarcoma)....and I know how devastated she has been for so many years; I don't share a lot with her about how much I hurt, and what stage my lupus is in. I think it would break her; I am the oldest and we are so very close. As the tears roll down my face while I type this, there is a sense of relief to let this out; and a great fear that the whole world is reading this...and I fear (that people will think I'm a whiner).

I have grown so close to friends I've made here on this wonderful website. I don't know how to say this in words that would do my thoughts or feelings justice; but I'll try. I believe that perhaps your precious daughter's death....in this unforeseen way, has been a way to bring to you, many more daughters, sisters, mothers, brothers, etc.; and please know how priviledged we feel that you have now become a gift to us. We are so thankful for your willingness to share your wisdom, time, and experience with us. In you we have found a sense of comfort, and a soft and safe place to fall, when we're feeling down.

The comfort and encouragement that you are able to give to us, comes from a heart that knows how we hurt, knows how we feel; and knows that we all need someone who understands. I strongly believe that we are all here to do something great in our lifetime, it doesn't have to be front page news type of great, but greater than our own everyday comfort zone. What your administrator did for you by setting up this website...has opened doors and hearts all over the world. Imagine that, all over the world....I believe that your daughter is smiling down on you and all those who have made this site possible; and I believe she is very proud of what you're doing; for us...and perhaps it helps you, to know that "love" is what made this idea grow, "commitment" is what made this happen....and "grateful" is what all of us are....for the sacrifice of your time to help us stay grounded, stay hopeful....and yes, stay connected.

Thank you for being here, for being a comfort to us all. We appreciate you, and all you do to keep this wonderful connection going.

God Bless You Saysusie,
Browneyedgirl

Saysusie
08-21-2006, 08:33 AM
Hi Browneyedgirl :D
I cried while reading your post; your struggles sound so much like my daughter's who also called me her hero. That caused full-fledged tears remembering her soft voice and her sweet face when she would tell me that I was her hero. Thank You So Much For That Memory :D
I do not often think about the fact that we do, in fact, have member from all over the world. To me, as you said, they are my family members who are sitting on my couch (like my daughter often did) asking me questions and looking for hope. So, I guess you are right! I feel as if I am talking to and with her each time that I research an answer and you should see how excited I get when I find the answer and am able to post that answer!
I have her picture right here next to my computer; she has that smile that I always loved and she is looking at me every time that I sit down to post on this site. So, you are so on point (and very insightful) when you say that she and I are doing this together in a way and she is, indeed, smiling at me. She is smiling at me right now (lol)
You know, there are times when I can actually feel her happiness. There is no one on earth who will ever convince me that our loved ones do not live on is some form or other (even if it is only in the love that we hold for them in our hearts)
I can't believe that I am sharing all of these emotions and feelings with you and (as you said) with the world. But, these words just seem to be pouring out right now.
No one will ever think that you are a whiner and even if you do whine, you deserve to do so. Also, we all NEED to have our "Pity Parties", just allow yourself to go through it, there is no need to explain, apologize or to hide it..you need to do it now and then and it is perfectly healthy to go through it. We are here for you during and after to let you know that YOU ARE NOT ALONE!
I am so happy that you are back and I have seen that you've made some cherished friends here...that also makes me smile!!
Thank you, truly, from the depths of my soul, for you kindness, understanding and caring!!
Thank All Of You!
Much Love
Saysusie

browneyedgirl53
08-21-2006, 09:29 AM
Oh Saysusie....you do my heart good!!

It's such a nice feeling, coming to this place........it feels like that feeling you get when you first wake up; and in your jammies, you pour yourself a cup of brew, and cuddle up on the sofa...........and there you are!!

Have a wonderful day....I'm off to speech and cognitive therapy.

Much love to you,
Browneyedgirl

beautifulbeluga
08-21-2006, 11:51 AM
Hi saysusie and browneyedgirl:

What can anyone say after reading such powerful posts other than thank you for the purity of your honesty and the presence of such wonderful earthly souls. Each of you have given me a gift. Hugs to both.

beautifulbeluga

browneyedgirl53
08-21-2006, 06:07 PM
There's nothin' like a little lovin' to get the day started, and welcome to our love fest (smile)....

What's new up in the north country? I hope it's a little cooler there, than here. It seems like it's hell burnin' hot everywhere; and for the record folks; it does get hot in Seattle !!!

So I'm breakin' out the baby pool, bring your suit and come wade with me (smile)....

Much love,
Browneyedgirl

Saysusie
08-22-2006, 08:29 AM
"Just a Little Lovin' Early In The Morning...." That has ALWAYS been one of my ALL TIME FAVORITE SONGS!! There is something about the lyrics and the melody that has always given me a gentle rocking/hugging kinda feeling. How appropriate that you would use that phrase :lol:

I hope that both of you have a wonderful day, one filled with (as I always say and I truly mean) Much Peace and Many Blessings!!

Saysusie

browneyedgirl53
08-22-2006, 12:10 PM
SAME TO YOU, FRIEND !!

Much love,
Browneyedgirl