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browneyedgirl53
07-15-2006, 06:11 AM
Hi everyone,

I was diagnosed with SLE in 2000. Since being diagnosed, I have had kidney failure, heart attack, stroke and now I have CNS and brain involvement. It has been easier for me to accept what happening with the kidney and heart; but as my cognitive skills and memory deteriorate, I feel so helpless. As much as friends want to "be there" for you, I have felt so alone in this disease. I started looking for lupus support groups on the web and I ran across this incredibly supportive web site!!! As I read through the conversations, I laughed and cried and thought to myself "this feels like home". Finally, a place where I can be heard....and understood, a place where someone may have walked this journey before me, or atleast with me. I would be lying if I said I wasn't scared. I am and I don't know if there is anyone out there with CNS and brain involvement.

I was placed on long term disability by my employer; and at 52 I'm feeling lost. I know they did the right thing, but I suppose that I gaged my productivity in life by my work. I guess this means "I need to get a life". That's scary (smile).

To whoever created this website, THANK YOU for reaching our and giving us a place to laugh, cry, share our triumphs and our fears. - browneyedgirl53

pinkjmf
07-15-2006, 04:26 PM
I will be praying for you. We are glad to have you.

Saysusie
07-16-2006, 07:12 AM
Hi Browneyedgirl53 :lol:

This site was created by our beloved administrator for me in memory of my daughter, Lauri, who succumbed to Lupus in 1999.
Your post about how this site made you feel is precisely the reason why it was created and I want to thank you so much for your kind words.
This is, indeed, a place filled with caring, supportive, informative, understanding people who all want you to know that YOU ARE NOT ALONE!
All of us have, at one time or another, been where you are, felt what you feel, and know what you can expect.
We are here to help you navigate through this disease and the fear and confusion that it can cause. You can come to us at any time at all and someone will always understand and answer your questions.
We are very happy that you've found us...Welcome to our family!
I wish you the very best
Peace and Blessings
Saysusie

browneyedgirl53
07-17-2006, 07:15 AM
Thank YOU for responding. I am so sorry for your daughter's loss. I lost father and two brothers, and the nicest thing someone once shared with me is "remember, memories live forever". I am sure you carry her memories with you every day.

How wonderful for you (and all of us) to have this opportunity to come together. This is great.

Do you know of web-sites that have information about brain and kidney involvement? I'm trying to soak up as much information as I can. You are right, this is a journey noone should ever do alone. I feel so much better.........THANK YOU AGAIN.

Hope you have a good day - Love
browneyedgirl53





Hi Browneyedgirl53 :lol:

This site was created by our beloved administrator for me in memory of my daughter, Lauri, who succumbed to Lupus in 1999.
Your post about how this site made you feel is precisely the reason why it was created and I want to thank you so much for your kind words.
This is, indeed, a place filled with caring, supportive, informative, understanding people who all want you to know that YOU ARE NOT ALONE!
All of us have, at one time or another, been where you are, felt what you feel, and know what you can expect.
We are here to help you navigate through this disease and the fear and confusion that it can cause. You can come to us at any time at all and someone will always understand and answer your questions.
We are very happy that you've found us...Welcome to our family!
I wish you the very best
Peace and Blessings
Saysusie

beautifulbeluga
07-17-2006, 03:16 PM
Hi browneyedgirl53:
I'm new to this site also. I have been sick for a long time and still not officially diagnosed with lupus but and being treated for it for the past two years. I am a bit older than you and wanted to mention that at 53 I was still in menopause and had lots of symptoms (cognitive) that were a result of menopause and not lupus from which I am now recovered. I don't know where you are in that womanly process. It was very overwhelming and scarey for me at that time and if I had a presentation to do when I was at my worst I either couldn't remember what I was supposed to say or I soulded like I was drunk because my words came out all garbled. Also I could know the word in my head but I couldn't get it to come out my mouth and became a master at replacing my intended word with something easier to say to cover-up my disability.

I also know what it is to have to give up on a profession I loved and go on disability because I was too ill to work. It has been almost a year and it takes some getting used to. It used to be that just men's identity was tied up in what they did for a living.....not so. I'm still looking for my new identity and I must say it is nice to not have to make excuses anymore because I can't perform (more up to my standards than anyone elses) or to make excuses why I can't make this meeting or conference or cancel clients. I was a clinical social worker with a very lucrative practice. Now I live on CPP disability (I live in Canada and it is not a lot of money) and investments. I have been ill for so many years I couldn't get private disabillity insurance. Life however goes on, no matter what challenges we face so I have learned to give thanks and keep putting one foot in front of the other. Hope you get a break in your symptoms soon so you can catch your breath because you sound like you are due for a break. Take care and know that many are out here knowing what you are going through and our prayers are with you.

browneyedgirl53
07-17-2006, 04:09 PM
Hi BeautifulBeluga (love that name!),

YOU ARE SO KIND. Thank you for those encouraging words. I felt like you jumped in my life for a moment, when you were describing "that the words would not come out what your mind was thinking"...EXACTLY.

What a wonderful site this is, isn't it? Finally, an opportunity to reach out to our lupus sisters out there who know exactly how you feel, and what you're going through.

So nice to hear from you, hope to hear back soon.
Take care, and thanks again for the encouraging words.

Love,
Browneyedgirl53

Sheryl
07-17-2006, 05:32 PM
Hi Browneyedgirl - (Love that Van Morrison song!)

Welcome to the site... I hope you will find as much friendship and support here as I have. I have CNS lupus too. So far it is only affecting my spine, I think. I do get very brain fogged sometimes though. I don't know if it's pre-menopause (I'm 45) or lupus. I do know when I have to take prednisone or neurontin (for nerve pain) I get MUCH more foggy...so if you are on medications, that could be part of it. I have tapered my pain pill to the minimum I can stand - sometimes you have to choose whether you need brain power or body power more!

I hope you will find more specific answers to your questions - I have done a LOT of web searching but I have not really read too much about the CNS component of lupus. What I have seen seems to relate more to seizures and strokes than to the symptoms I have. Good luck!

browneyedgirl53
07-18-2006, 08:40 AM
Hi Sheryl,

Thanks so much for your words of encouragement, what a great web-site this is. (smile).

My journey on the web has just begun, and it's amazing how one....then...two hours go by!!!

Talk to you soon. Have a great day.
DJ (browneyedgirl53)

p.s. I love that Van Morrison song too, when I was a little girl, and transistor radios were all the rage back then; I thought for sure he was singing about me (heee heee).

Saysusie
07-18-2006, 09:55 PM
Here are some sites and articles regarding brain involvement in SLE:

http://www.lupus.org/education/brochures/systemic.html

www.lupusvic.org.au/cns.htm
www.buffalo.edu/news/fast-execute.cgi/ article-page.html?article

www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve& db=PubMed&list_uids=9292033&dopt=Abstract

www.lupusresearchinstitute.org/ labdetails.php?lab_diamond

www.lupuswa.com.au/aboutLupus/command.html

Here are some sites and articles regarding kidney involvment in SLE:

www.kidney.org.uk/Medical-Info/ kidney-disease/lupus-types.html

www.lupus.org/education/brochures/kidney.html

www.mtio.com/lupus/lal_6.htm

www.geocities.com/sarahmcraig/lupuskidneydisease.html


I hope that this is what you were looking for :lol:

Saysusie

browneyedgirl53
07-20-2006, 06:49 PM
Hi,

I've spent hours pouring over all this information......I LOVE WE HAVE LUPUS.COM.....you are wonderful. All the information has been helpful. THANK YOU !!!!!!!!

Hope you're doing well.

Take Care,
browneyedgirl

Saysusie
07-24-2006, 03:51 AM
You are most welcome :lol: :lol:
I am so happy that you are happy with our site...that truly makes me happy!!

Peace and Blessings
Saysusie

atedj
07-29-2006, 08:25 AM
Hello in Seattle! Welcome to our family. I love this website, too. I just wanted to say hi from around the corner: I live in Tacoma, WA. Nice to know I have a "neighbor"!

ihate2shave
07-31-2006, 08:55 AM
Hi Browneyedgirl, you are such a sweetie, your big heart comes through loud and clear! I also have had a lot of cognitive problems, probably a combo of SLE and meno - or peri or whatevertheheckitis. Thankfully, I've improved a lot the past few years (became ill 2002).

There are indeed many gifts from having this, and one is that I've been forced to slow down and be more in the moment. I too was driven in my career, perhaps a type "A" personality. And I'm a whole different person. The first year I had this, my exhaustion was so complete that for most of that year it was incomprehensible that I could even move and talk -- it felt like it was someone else because I was NOT THERE! It was like that saying about the two sets of footprints where our Creator said He'll never leave our side... and when there's only one set of footprints that means He is carrying us. That year really made this story clear to me. My mind was so blotto that I could not say any of my memorized prayers, and when I started to regain my mind I felt really terrible about it ... then realized that I'd been in a kind of silent prayer or meditation for the entire year.

In a funny way, I miss that! But of course, now I'm in a different phase and the one we're in is always the one where we belong.

Take good care, keep good people around you and you will be right where you belong.