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Oluwa
02-18-2008, 05:50 PM
I know many come and post once, twice and even more then poof we never hear from them again.

And I also lose track of where I had been and forget to return to that thread and reply. Forgive Lupus, it is he who does that to me...

I always wondered, did they lose the link and can't find there way back in cyberspace to us..or perhaps they took a turn for the worst.

If it isn't any of the above...and you are in cloak mode, guest mode reading but in need of direct comfort, we are here. My arms are always open, I have lots of room to give feeling of hugs. We all do...

:cry: I feel bad, I unintentionally neglected someone.

We have lupus means you too....you don't have to be alone.
Oluwa

sits_inthe_corner
02-18-2008, 06:56 PM
As a new person to this board let me tell you this....

This board is the friendliest, most responsive board I've found. I've lurked on others and posted on some. But there's no movement...no replies....no comments...just the same postes sitting there from the first time I went on that board.

The warmth and the empathy is obvious here. Thank you all so much.

Some times I cant remember what section I made a post in lol. I imagine others do the same. :lol:

Pearl
02-18-2008, 07:04 PM
Gentle Oluwa -

Such a kind and thoughtful soul. Thank you for your presence here.

rob
02-18-2008, 07:08 PM
Hi Oluwa,

I can't speak for anyone else, but I'm not planning on leaving here anytime soon. I like it here. Such a great group of people here. Non-judgemental, diverse, and understanding.

rob

mnjodette
02-18-2008, 07:09 PM
I found this board in the middle of the night, shortly after I was diagnosed. I was SCARED TO DEATH!! :shock: I didn't have anyone to talk to (hadn't yet found a local support group) and I didn't know anyone else who had lupus. Everyone on the board was so kind. Saysusie provided me with such wonderful information - and eased some of my worst fears. This is a warm and safe place for me. Now, I've gotta' check in regularly so I don't miss anything!

Jody

Oluwa
02-18-2008, 08:04 PM
Me too, I check in daily, okay hourly....I was running out of rope and hope when I stumbled in..

Inbetween the pop ins and outs I missed someone. And I want her to know and anyone who may have been overlooked, whose post went unanswered, you do matter...

Love,
Oluwa

Saysusie
02-19-2008, 10:16 AM
Sweet Oluwa;
My "Unofficial Moderator" :lol:

Thank you for thinking of your friend and of the many who have not, for whatever reasons, returned to our board to read our responses. I read all of your posts reminding each of them that we are here and that we do care. For being who you are, I thank you! :lilangel:

Mnjodette, Rob, Pearl, and Sits_inthe_corner, Oluwa;
I am so happy that you were able to get, from this site, what Conrad and I wanted to provide. When my daughter was so ill, she and I tried so very hard to find a place to answer our questions, to give us support, to understand our fears, etc. and there was no one place that helped us at all. Like you mentioned, sits_inthe_corner, our posts would go unanswered for weeks and we were left with the feeling that no one truly cared! In Lauri's memory, I wanted to make a place where no one who was suffering with this disease (or any auto-immune disease) would ever feel that lonely and uncared for again.
Thank you for letting me know that, in at least my small way, I am accomplishing that!!

With Love
Saysusie

stjames13
02-19-2008, 10:28 AM
:? :? :? :?

I AM SO SORRY THAT YOU FEEL THIS WAY......

THE REASON WE FEEL THIS WAY ARE NOT OBVIOUS TO US BUT TO SOMEONE ON THE OUTSIDE IT IS.

FIRST WE ARE ISOLATED DUE TO THE FACT THAT WE ARE USUALLY HOME ALONE AND HAVE NO ENERGY OR STRENGTH TO GO OUT.

WE ALSO FEEL ALONE BECAUSE NO-ONE ESPECIALLY OUR LOVED ONES REALLY UNDERSTAND OUR DISEASE OR WHAT WE DEAL WITH ON A DAY TO DAY BASIS.

WE KNOW WE ARE LIVING WITH A POTENTIAL FATAL DISEASE, WE KNOW IT IS NOT A COMMON DISEASE, AND WE KNOW THAT THE PROFESSIONALS DO NOT KNOW EXACTLY HOW TO EVEN DIAGNOS US CORRECTLY LET ALONE SET UP A TREATMENT PLAN.

BASICLLY WE ARE THE UNKNOWN DISEASE...ALONG WITH OHTERS LIKE PARKENSON;S, HEP C, AND DISCOID LUPUS THAT THEY HAVE NO REAL DRUG THAT IS DESIGNED SPECIFICALLY FOR US !!!!

SO WHEN YA LOOK AT THAT WE ARE BASICLY OUT IN THE COLD ON THIS ONE AND IT MAKES THOSE FEELING SEEM BIGGER THAN LIFE.

THIS IS WHY I SUGGEST THAT WE ALL HAVE A THERAPIST TO HELP US DISCUSS WHAT IS ON OUR MINDS AND JUST TO GET IT AND MAYBE US OUT OF THE HOUSE FOR AWHILE OF NOTHING ELSE!!!!!


MAY I SUGGEST THAT YOU FIRST SIT YOUR FAMILY DOWN AND EXPLAIN TO THEM EXACTLY HOW YOU FEEL AND WHY?

TELL THEM OF YOUR NEEDS AND WANTS REMEMBER THEY ARE NOTMIND READERS AND WE DO TEND TO GET INSIDE OUR OWN HEADS AND NOT COME OUT !!!!

SECONDLY YOU MUST GET YOURSELF A HOBBY SOMETHING TO DO AT HOME WETHER IT BE KNITTING OR PAYING PIANO OR GUITAR ANYTHING !!

THIRD YOU MUST KEEP YOUR MIND AS HEALTHY AS POSSIBLE.....AND A THERAPIST CAN HELP YOU DO THAT AND TEACH YOU HOW TO MEDITATE AND THAT IS VERY HELPFULL.

FOURTH MAYBE YOU CAN VOLUNTEER SOMEWHERE LIKE A HOSPITAL AND YOU WOULD BE AMAZED ESPECIALLY IF WORKING WITH CHILDREN HOW MUCH BETTER YOU WILL FELL SEEING WHAT THEY DEAL WITH.

AND LAST YOU MUST REALIZE YOU ARE NOT ALONE AND NEVER WILL BE IF NOTHING ELSE YOU CN ALWAYS PRAY

LOOK AROUND IN YOU TWSP AND SEE OIF THEHOSPITAL HAS ALUPUS SUPPORT GROUP.

AND LAST MAYBE A DOG OR TAKING A NEIGHBORS DOG FOR A WALK...FRESH AIR AND SUNSHINE (but be covered) IS GREAT FOR LIFTING UP ONES MOOD

BUT PLEASE DO NOT ALLOW SOMEONE TO TELLYOU THAT YOU NEED MEDS FOR DEPRESSION AS YOU ARE NOT CLINCIALLY DEPRESSED. THOSE MEDS ARE FOR PEOPLE WHO DO NOT HAVE A REASON TO FEEL AS THEY DO.

IF YOUR DEPRESSED WITH A SICKNESS THEN YOUR DEPRESSION IS NOT DEPRESSION IT IS A GREIVING PROCESS YOU ARE GOING THROUGH FOR LOSING PART OF YOURSELF !!!!! AND THAT'S EXPECTED AND OK.
NEVER ADD ANY MEDS YA REALLY DO NOT THINK YA NEED....EACH ONE HAS A SIDE EFFECT AND YA NEVER KNOW HOW THAT MED IS GOING TO AFFECT YOUR HEALTH AND MIX WITH OTHER MEDS.

I HOPE THIS FINDS YOU IN BETTER SPIRITS.

STJAMES 8)
:wink: :wink: :wink: :wink:

Razzleberry
02-19-2008, 12:04 PM
Hi Oluwa,

I'm one who posted here for a while then stopped. I read almost daily tho and feel a part of this family even tho I don't often "show up" anymore. Your empathy and insights and caring have made me feel better.

One reason I stopped posting was that I googled my name and found posts from here that showed up. It worried me that I was revealing personal info that was readily available to anyone on the net. It kind of scared me.

I decided the other day to post again but keep symptoms and treatments to myself. I might not get the specific support I need but maybe I can ease someone else's troubles a tad.

Oluwa, you have as gift for giving comfort and I thank you and ...can I please be your friend too? :)

Saysusie
02-19-2008, 12:22 PM
Mrs. Murdena;
That google thing has happened to me also. But, I figured that everyone knows these things about me anyway (my loss, my diseases, my symptoms, my treatments etc.) and what can they do to harm me by knowing these things. I've suffered, already, the most devastating loss...anything else is sort of trivial to me!
I understand your trepidation and I don't blame you for wanting to be careful. I guess I'm just a kinda careless gal :lol: I figure "Who Cares?" Maybe I'm being silly or naive or both! oh well :roll:

Peace and Blessings
Saysusie

Oluwa
02-19-2008, 01:12 PM
MrsMurdena,

I did a goole and there you were. I did Oluwa and there they were, oodles. Yoruba language. Maybe I was the 11,300rd result.

Sometimes I chuckle outloud, dribbles, sweat, pooie, puke and scabs. No boundries...just like a family, we are.

My IT family, makes you my friend. Even without Lupus I know I would like each and everyone...

Big family hugs,
Oluwa

sick n tired
02-19-2008, 10:12 PM
I just did a google of my name and my name may be kind of common because one said that "my name" was a salsa dancer, hmm...I never knew that I could salsa... but the other one said that "my name" became Acting Coordinator for the Office of Counterterrorism I am so proud of myself. I told my hubby that he just thought that I was at home in bed but there I was leading a double life dancing and saving America from terrorists :D .

Truthfully, after thinking about it, I really do not care if my name comes up linked to lupus. That is what I have. I do understand someone not wanting the world to know that they are depressed, for instance. So I can understand others who do not lead a double life being careful. I guess being ill might be a problem if I still wanted to coordinate counterterrorism. :lol:

Googling more about me that I never knew,

Karen

Oluwa, I think that you have been great geting in touch with others. I have just been pretty ill and had two sons who were very trying the last 2 weeks.

Suzique
02-20-2008, 12:56 PM
Okay - posting this is one of the hardest things I have ever done. Letting out tender pain is excruciating.
I once was a leader of 100's of nurses. They looked to me daily for advice and comfort in their daily work. When IT came along, IT tore me down to a fragment of what I once was. No job, much less the level of responsibility and respect I had. Never had time to develop much in the way of hobbies. Had a very young child with whom I could no longer play due to physical limitations. Life became torment. Along the way, family began to view me as just a "sick person"; no longer strong, effective, intelligent. My opinions no longer mattered (were ignored nearly every time given).
Present time. I have begun to crawl out of my cave. Signed up for (and have completed one course) college courses for a new career that I think I can physically handle. Beginning to have a LITTLE self-esteem again. Found this board. Thought it was wonderful! Read it faithfully. Saw pain in people that I thought I could anwer/ease. At first, found great joy in the responses. Then, found several times, my answers, that I thought were so helpful, got accidentally lost in the shuffle. I know it was not intentional, but being forgotten still hurt, in my present state. I did not share my pain. It was so raw, I did not want to expose myself.
Some beautiful people came to me, though, and helped me to see that I should share here, of all places, and never feel personal hurt when my posts are not seen or picked up. I am trying again, because of those people, and because SaySusie wants so dearly for this site to "be there" for people like me. This is for you, SaySusie, and you, Oluwa. Love you both.

Susan

Saysusie
02-20-2008, 01:17 PM
Suzique;
I can barely see my screen because I am crying. I am crying because you did come back and you did share. I know how you feel sometimes having your posts get lost in the shuffle, it has happened to me many times. But, as Oluwa said, we just keep posting. In fact, if you go to "I go a little something like this" in Lupus Symptoms, you will find many, many posts by Oluwa that get no response at all, and she just keeps posting. So, sweet Suzique, it is never, ever personal. But, if you ever feel that it is, or that you are being ignored...Scream at Us!! Tell us how you feel, tell us what you need. The entire purpose of this site is so that you never feel lost, ignored, misunderstood, lonely, afraid, or unwanted!!
Also, when you are gone, you are truly missed because you are important to us! To ALL OF US!!
It must be very, very difficult to have a complete change in your life as you have done. And, then not to have the support of those loved ones whose support means so much to you. Of course your emotions are raw, you have been through some terrible losses (your health, your job, your self-esteem) and you must allow yourself to grieve these losses. However long that grief takes, it is something that you must do. Believe me when I say that, when you are grieving your loss, I know that it only takes a feather to knock you off balance and send you careening down into despair, loneliness, and pain.
Here, Suzique, is one place where no one will ever intentionally cause you pain. If, somehow, by inaction, we do cause you pain..this is also the place where you can tell us that and not be condemned for your feelings and always be welcomed with open arms and love!!
Thank you for sharing with us, thank you for coming back to us...thank you for trusting us again.

Much Love, Peace and Blessings
Saysusie

Oluwa
02-20-2008, 01:54 PM
Saysusie,

Thank you for the sweet words and all your compliments you always give me. I want you to know without you, without your Laurie, there would be no us.

You are sharing a part of your family, yourself with us...a big part. Your heart is so big..to bring us into your family too. Thank you, ever so much.

I may be alone many days in a week... in the physical sense but finding this site...please know I am not lonely in my heart no more. Loneliness hurts.

Lonelines hurts especially when someone is in the room that doesn't understand. I am understood here..thank you.

Your accomplishment is huge...really it is. Thousands have found there way here...

Hugs full of love,
Oluwa

Oluwa
02-20-2008, 01:58 PM
Suzique....

I am smiling through my tears. Happy tears...This is my friend! Isn't she beautiful..

Come here...squuueeze..tighter. It's going to be alright, Susan...
Love,
Oluwa

Oluwa
02-20-2008, 02:12 PM
Sits in the Corner....indeed it is great board...your humor makes it even more

Be well..hugs,
Oluwa

Oluwa
02-20-2008, 02:14 PM
EVERYONE...

Having Lupus doesn't make us different..It makes us even more special..

I am glad you and you are all here too....

Hugs,
Oh

Numpty
02-20-2008, 03:39 PM
Wow, what an amazing thread, thanks Oluwa ~hugs~

I've been guilty of not posting much recently although I still come here every day and read. I personally have been struggling with my own health issues which seem to be getting fired at me from all angles these psat few weeks. I thought that if I was struggling to hold myself together then how could I be of any help or support to anyone else!?

I realise now though that sometimes all it takes is a 'hey, I read your words, I hope you get better and heres a hug'.

So to everyone that looks in here, here's a hug..... ~HUG~

mnjodette
02-20-2008, 03:43 PM
Suzique, I'm so glad you came back to us! I'm one who is guilty of not always replying to posts, even when I have a response in my head. Some times I think "Oh, someone else will have a much better response than mine." Or, "I'm just not in a good place right now...I think I'll just read posts today." But, when you're the one posting and you go back to the board over and over and there's no reply...it hurts. Even if it's unintentional. Please keep trying - there are wonderful people here (you already know that....) and if you don't get the response you're looking for, like Saysusie says...SCREAM at us! Don't be shy. Never, ever think that your posts are unimportant...everyone who stops here is important. I hope we see lots and lots of your posts, Suzique.

Saysusie
02-20-2008, 03:59 PM
Oluwa;
I am sending you soft whispers from my heart.....do you hear them??? They are saying more than typed words can relate. Do you hear them???


Always
Saysusie

Oluwa
02-20-2008, 05:10 PM
That is what I was hearing, Saysusie..it was you and it got louder as I came closer to the PC...

I danced inside...
Oluwa

Pretti in Pink
02-20-2008, 07:06 PM
You ladies really have a Great gift and are Heaven sent.

Razzleberry
02-20-2008, 08:50 PM
Hey you guys,

I will come back and post ..whether google finds me or not ....just will be careful about "personal" info from now on. It's just scary thinking that unscrupulous non-lupie friends might be reading my medical history. Thanks for your encouraging posts reassuring me. I hope others who are reading and not posting will come back too.

Looking forward to being more consistant and trying to be helpful too.

Saysusie
02-21-2008, 10:47 AM
I am glad to hear that, Mrs Murdena. I am looking forward to your continued words of wisdom! :lol:

Peace and Blessings
Saysusie

Saysusie
02-21-2008, 10:50 AM
Oluwa...

Hey, we're dancin'

"Callin' out around the world
Are you ready for a brand new beat?
Everyone around the world
Is dancin' in the street......."

:multi:

Peace and Blessings
Saysusie

Oluwa
02-21-2008, 04:26 PM
Woohoo..I'm moving, I'm rockin'...and shakin' it all.

Saysusie
02-22-2008, 12:11 PM
Really Cool Avatar....I love it!!!

Saysusie

teresaa40
02-22-2008, 05:51 PM
I needed this thread today. Feeling very alone. [/img]

Oluwa
02-22-2008, 07:40 PM
Head hug for you Teresaa...left you a post on your thread...

I was tough, tough filled with love...

I care,
Oluwa

sick n tired
02-22-2008, 09:23 PM
Whenever you feel alone, come to this forum. It is a great pick me up. I know. It is so easy to feel alone and down because we don't always look sick

Saysusie
02-24-2008, 11:18 AM
Teresa;
"Alone" is something we never want you to feel. Please know that we are always here, day or night, when you need someone or when you need to be assured that you are not alone. We may be a "cyber family", but that does not, in any way, diminish how much we truly care about each and every member of this family.
Please come to us, we are always here for you.

Peace and Blessings
Saysusie

onpointe
02-24-2008, 11:55 PM
Hi All,

Just wanted to add my thoughts....I think this is a wonderful place as well, being new to this illness is scary and I have many questions, all of you have been so kind in calming my fears and answering my questions. I also appreciate all the support, especially about having to give my cute dog up, you all helped make that decision much easier! Thank you so much!!!! I will keep posting no matter who see's what, like it was said before, who cares, we have Lupus and need to talk, we aren't hurting anyone, this is a place for support and healing and I'm so glad I found my way to you all!

onpointe

Saysusie
02-25-2008, 11:49 AM
Onpointe;
I am so happy that you are here and that we are able to give you the support and comfort that you need. Yes, just keep posting. Keep talking, keep sharing, keep asking questions and keep giving the support that you provide. That is what we are all about! :lol:

Peace and Blessings
Saysusie

Oluwa
03-17-2008, 11:14 AM
To...fill in the blank...

I am behind on my replies and lost where I had been..I am sorry if I missed your posts.

Behind in my posts but you are not far from my thoughts..

Hugs,
Oluwa

Pretti in Pink
03-17-2008, 01:11 PM
You are always so diligently responding to us, I think you take pretty good care of us.

mnjodette
03-17-2008, 08:02 PM
Pretti in Pink is right, Oluwa...you are a very faithful friend! I think you may be the most consistent reader and poster in our little band!