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Author Topic: Flight of the "Hope Bracelet" (TM) Journey  (Read 73659 times)
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3sisters
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« on: July 08, 2008, 11:28:03 pm »



We have decided to launch a Lupus and MCTD patient-involved project, in an effort to create unity among patients and to bring hope and encouragement to other's.
 
In an effort to promote the sites trademark and mission,
     " Where HOPE is a Work in Progress," (TM)
 
we have created : " Flight The Hope Bracelet Journey " (TM)
 
The Plan:
 Kathy will be sending out the Hope Bracelet (TM) to a member of her choice to begin the bracelet's journey.
 
1) The Hope Bracelet (TM) will visit each patient for 14 days. 
 
2) With each patient visit the bracelet makes, we are asking that the bracelet receive a new charm (of patients choice) or ribbon (if finances are too tight). Enclosed in the bracelet envelope will be "O rings" to attach the charms.
 
3) Each patient is encouraged to take a photo of themselves  (if possible) wearing the bracelet, displaying the new additions of charms. Photos can be e-mailed to Kathy at: Lupuswebsite@aol.com
Photos will be placed on the site.
 
4) Patient will write/type a short letter of current life joys and challenges, and a few words of encouragement and hope for other patients to read. We ask that each letter written be signed, as they will travel along with the bracelet.
 
5) Patient will choose the next patient to receive the Hope Bracelet (TM). The individual that you choose can be another patient that you know personally or someone from the patient address list that will be traveling with the bracelet. (Out of respect for peoples privacy, we ask all participants to keep the list secure)  If you decide to add someone to the list, please make sure that you include their name and address to the list. The mailing address list will travel with the Hope Bracelet (TM) and letters.
 
6) Kathy will create a map on the site logging the journey of the
 Hope Bracelet that we can all view! Be sure to e-mail Kathy when the bracelet arrives to your home, so that your visit is displayed on the geographic map.
 
7) The Hope Bracelet will return home to www.LupusMCTD.com headquarters. The story of the Hope Bracelet (TM) origins will be posted on the site along with all patient letters  for viewing.
 
8) The Hope Bracelet (TM) and story of the bracelet will be auctioned off on Ebay with proceeds to go to site expenses.
 
If you want the Hope Bracelet (TM) to visit you, please e-mail your name and address to Kathy at: Lupuswebsite@aol.com 
We look forward to connecting with you on the journey!
 
Thanks to Dave Walters/Vice CEO
for coming up with the Hope Bracelet (TM) name!!!   
 
Next year, "International Flight of the Hope Bracelet Journey 2009!" (TM)
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Living with NP-SLE/ MCTD and MS. Powered by the Indigenous 7th Sense and lots of meds... Living with an invisible illness sucks. But living with an UN-diagnosed and UN-treated illness REALLY sucks.
"Where HOPE is a Work in Progress™"
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« Reply #1 on: July 09, 2008, 03:34:21 pm »

clbrte It just left Modesto,CA on it's journey north towards Sacramento.
Instructions, addresses to mail it to, "O" rings to attach a charm or ribbon enclosed, write/type a short letter of current life joys and challenges, and a few words of encouragement and hope for other patients to read is enclosed.
I enclosed the bracelet & O rings in a small envelope and the 3 pages of instructions, addresses. lettere of encouragement in a long business size envelope and placed 2 stamps on it. That should be sufficant.

Everyone post HERE as the "Hope Bracelet" travels through your state eventually coming back to Modesto, CA to be auctioned off on Ebay.
If you want to still participate, email ASAP and we'll make sure through communicating with the next recepiant will get your address.

Now I'm off to create the map.
I didn't take a pic of me wearing it, I'd figure when it returns I will take pics of the Hope Bracelet then.
Have fun everyone, check your mailbox every 14 days... We won't know who the next person is who is going to mail the Hope Bracelet to. 
« Last Edit: July 09, 2008, 03:35:28 pm by Adminஐﻬ » Logged


I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.
www.LupusMCTD.com Represents:
1) We are patients helping researchers build a future for the lives of others...
2) Where HOPE is a WORK In Progress
3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients
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« Reply #2 on: July 09, 2008, 04:11:02 pm »

Interactive map below in the footers.
Here is a link for a large view which can be changed around to see all the places the "Hope Bracelet" travels. http://useamap.com/LupusMCTD
Be sure to POST HERE when it arrives at you home within 14 days.

If you add someone else to the list, we need to know that to calculate the time it returns back to Modesto, CA.

**NOTE, it's not too late to send Kim or myself your home address to add to the list before it leaves her house. She will recieve it tomorrow July 10, 2008
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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.
www.LupusMCTD.com Represents:
1) We are patients helping researchers build a future for the lives of others...
2) Where HOPE is a WORK In Progress
3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients
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« Reply #3 on: July 09, 2008, 04:18:49 pm »

What the map looks like
As the "Hope Bracelet" travels, you will be able to see where it has been
http://useamap.com/LupusMCTD
« Last Edit: July 09, 2008, 04:20:14 pm by Adminஐﻬ » Logged


I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.
www.LupusMCTD.com Represents:
1) We are patients helping researchers build a future for the lives of others...
2) Where HOPE is a WORK In Progress
3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients
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« Reply #4 on: July 14, 2008, 09:36:04 pm »

bumping this up . it's not too late to have your name & address added to the list for the bracelet to come visit you
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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.
www.LupusMCTD.com Represents:
1) We are patients helping researchers build a future for the lives of others...
2) Where HOPE is a WORK In Progress
3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients
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« Reply #5 on: July 20, 2008, 05:22:59 pm »



Bumping up    CandleSmilie
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Living with NP-SLE/ MCTD and MS. Powered by the Indigenous 7th Sense and lots of meds... Living with an invisible illness sucks. But living with an UN-diagnosed and UN-treated illness REALLY sucks.
"Where HOPE is a Work in Progress™"
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« Reply #6 on: July 20, 2008, 05:31:47 pm »

oh wow that is great Kathy do you have my new address
if not let me no so i can get the flight going from here smiley
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I JUST WANT TO SAY TO YOU ,WHEN YOU FEEL SAD JUST LOOK UP, AND ASK GOD TO GIVE YOU JOY ,AND HE WILL GIVE YOU THAT...STAY BLESSED,And be not afraid;go tell my brethren that they go in to Galilee,and there shall they see me .....
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« Reply #7 on: July 20, 2008, 06:39:52 pm »

oh wow that is great Kathy do you have my new address
if not let me no so i can get the flight going from here smiley
Yes Tesa,
I had your name on the list, but with your old address. You need to see  my address book, I now I 3 different addresses of yours!
No worries here, Kim took care of it and I wrote down your new address.

Thank you for letting us know.
The Flight of  the Hope Bracelet will be on it's journey to you soon! litbflys
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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.
www.LupusMCTD.com Represents:
1) We are patients helping researchers build a future for the lives of others...
2) Where HOPE is a WORK In Progress
3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients
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« Reply #8 on: July 21, 2008, 07:15:41 pm »

bumping this up . it's not too late to have your name & address added to the list for the bracelet to come visit you
Bumping this up to collect any late new comers who would like the Flight of the Hope Bracelet to visit you.
It will be leaving California soon and we need as many addresses as can be to be put on the list for where this bracelet is to go to.

REMINDER:
Once you recieve the bracelet, you are to wear it, add a charm or ribbon to it, write a few words of your lifes joys and challenges. Send the bracelet to the next person on the list along with the addresses and what you wrote.
It's wonderful we have had strangers read about it on My Space and You Tube and signed up here just to participate, that's WONDERFUL!!!  angel


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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.
www.LupusMCTD.com Represents:
1) We are patients helping researchers build a future for the lives of others...
2) Where HOPE is a WORK In Progress
3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients
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« Reply #9 on: July 25, 2008, 08:51:16 pm »

The original  Flight of Hope Bracelet (TM)  for awareness of lupus and other auto-immune disorders, has made two landings and will be taking flight very soon to all those on the list.
We'll give you till this Sunday to get your name on the last minute list.
 
Everyone knows that this site has its own server, as do most other forums;  that every post is dated, and the time is stamped to show originality/origin/authenticity. Dated and time stamped posts are held within server data bases.
If you see others copying the same idea or likeness, please make note of the date and time  their "idea" was posted and send us the link. We have recently received information from other's that there are some other site's doing copy cat behavior regarding idea  the Flight of the Hope Bracelet (TM) and the 2009 International Flight of the Hope Bracelet (TM).
 
Our Board of Directors works extremely hard without any help from outsiders. To see outsiders taking our original ideas  and  "making it their own"  by tweaking our originality is disrespectful. Duplicating other's work, shows the lack of integrity that motivates such behavior from individuals at such sites. Copying is a sincere form of flattery, but in the Internet world it is regarded as plagiarism.

The owner  of  www.LupusMCTD.com  can assert common-law trademark rights by using this mark ™ after the mark's first use in each document, advertisement, or other visual medium.
 

« Last Edit: July 25, 2008, 10:37:20 pm by 3sisters » Logged

Living with NP-SLE/ MCTD and MS. Powered by the Indigenous 7th Sense and lots of meds... Living with an invisible illness sucks. But living with an UN-diagnosed and UN-treated illness REALLY sucks.
"Where HOPE is a Work in Progress™"
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« Reply #10 on: August 09, 2008, 04:20:48 pm »

Upate on the "Flight of the Hope Bracelet"
Check at the bottom of it's map link to see who's home in what state it has visited.
http://useamap.com/LupusMCTD
There was a slight delay when it was shipped to an old address of one of our members.
Right now we are waiting for the new occupants of that address to forward it back to us, so it may proceed it's journey.
« Last Edit: August 09, 2008, 04:24:45 pm by Adminஐﻬ » Logged


I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.
www.LupusMCTD.com Represents:
1) We are patients helping researchers build a future for the lives of others...
2) Where HOPE is a WORK In Progress
3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients
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« Reply #11 on: September 27, 2008, 01:37:38 pm »

 hppygrlmil  The Hope Bracelet is home with me carefully secured...in Florida...I am going to send it to one of the other florida girls on the list...Donnabelle or Andrea....they are in the same area I think.....Thank you Kim for my magnet card..and I love your symbol charm..thank you for the nice letter from you and Kathy..they wre very uplifting....so Kathy you can stick that needle in my side of the world...love to you all hugs...lots of Blessings to you ...Thank you for being a positive influence in my life....so long..Clare
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« Reply #12 on: October 01, 2008, 01:38:30 pm »

The bracelet is on it's way north up to New England to our Miss Lacy Ann's home.
 Be watching your mailbox within the next 2 days. It was shipped Priority from Miss Clare in Florida
 clbrte
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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.
www.LupusMCTD.com Represents:
1) We are patients helping researchers build a future for the lives of others...
2) Where HOPE is a WORK In Progress
3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients
Crabbyla279
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« Reply #13 on: October 01, 2008, 05:57:42 pm »

I want to thank Clare on here for sending it up my way... and for the phone call alerting me to its pending arrival!  My only sadness lies in that I was unable to take her call!!!!  I was at work- cleaning the bathroom between the preschool rooms- and it was naptime.  I'd already had my break.  Couldn't very well answer the call!  I figured she'd leave me a message.  Which she did, and I listened to it before I pulled out of the parking lot at work to head for home.  I had to smile, then hold back the tears as she thanked me for the encouragement etc.  I am anxiously awaiting my turn with the bracelet!
luvs ya bunches~
Lacy Ann
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« Reply #14 on: October 01, 2008, 06:08:41 pm »




 hrt  You're very much welcome Miss Clare! To quote Tesa, "Keep the Light Going!"

How exciting it's off to Lacy Ann is the beauty of    pkin   New England Fall! Whoo~hooo!!!!!!!   clbrte 

Very cool stuff!!!!!       CandleSmilie
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Living with NP-SLE/ MCTD and MS. Powered by the Indigenous 7th Sense and lots of meds... Living with an invisible illness sucks. But living with an UN-diagnosed and UN-treated illness REALLY sucks.
"Where HOPE is a Work in Progress™"
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« Reply #15 on: October 01, 2008, 06:12:25 pm »

I want to thank Clare on here for sending it up my way... and for the phone call alerting me to its pending arrival!  My only sadness lies in that I was unable to take her call!!!!  I was at work- cleaning the bathroom between the preschool rooms- and it was naptime.  I'd already had my break.  Couldn't very well answer the call!  I figured she'd leave me a message.  Which she did, and I listened to it before I pulled out of the parking lot at work to head for home.  I had to smile, then hold back the tears as she thanked me for the encouragement etc.  I am anxiously awaiting my turn with the bracelet!
luvs ya bunches~
Lacy Ann
Honey!!!
Flight of The Hope Bracelet™ is landing at YOUR home in the very near future, in a matter of 48 hours or less!!
Thank you Clare for calling Lacy Ann as well as informing me, as I put the info on our map tracker this morning.
So far this is one idea that seems to be sucessful and has had positive results with lots of activity.
Yaa! That's goood! Yaa! ::as she speaks in her fake Swedish voice, walks way with her pigtails flowing in the wind::

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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.
www.LupusMCTD.com Represents:
1) We are patients helping researchers build a future for the lives of others...
2) Where HOPE is a WORK In Progress
3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients
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« Reply #16 on: October 01, 2008, 08:46:07 pm »

 litbflys hrt prplbtfy....Hello Lacy Ann, Katsu, Kim, 3 sisters, Tesa, all family members....Just wanted to say I was thinking of you and keeping you all in my prayers....I certainly appreciate all of you and I am sorry I made you cry Lacy gsad ... ggrin ... hope you get rest from all your hard work today with the children....I am glad that you are looking forward to receiving the *Hope Bracelet*..it is coming along with the charms..I also am looking forward to the finished product....I took a pic of it which I will send to Kathy along with pics of my area and of course my moon face...from the prednisone....it is going down though now that I am on twenty mgs...
I had a wonderful chat with Kim and Kathy tonight...just happened to call while Katsu was on with Kim..wow what a woman...Kim you are up there with *Amazing Women*....  I feel so much a part of this family...it is wonderful...I was having an exhausting day and slept most of the afternoon into the evening and was totally rejuvenated with that phone call..I am so glad I followed my spirit and called....Tesa I am calling you tomorrow....
Well everyone..so long..goodnight..rest as well as you can and I will visit again soon....Love to all..May Jehovah bless you and keep you safe and strong.....many hugs....your sister..your friend....Clare.....
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« Reply #17 on: October 01, 2008, 09:15:47 pm »


Quote
..I am so glad I followed my spirit and called
 

Hi Clare! Your quote confirms for me that we are all kindred spirits. Kathy also uses the term synchronicity, which also confirms our bond. Thanks for sharing some of your evening with Kathy and I on the phone, it was a delight to hear your voice and visit with both of you girls.  hrt  I look forward to chatting again, I'm sorry that my phone battery ran out~ I didn't charge it last night...

Be well, Clare and thank you for being in my life and for spreading your passionate message of faith and hope to so many people here. The Poor in Spirit do find the Good News here.  > I being one of the Poor in Spirit.  gwink


                                          CandleSmilie
With love,  Sista Kim
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Living with NP-SLE/ MCTD and MS. Powered by the Indigenous 7th Sense and lots of meds... Living with an invisible illness sucks. But living with an UN-diagnosed and UN-treated illness REALLY sucks.
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« Reply #18 on: October 01, 2008, 09:23:33 pm »

Quote
I feel so much a part of this family...it is wonderful...I was having an exhausting day and slept most of the afternoon into the evening and was totally rejuvenated with that phone call..I am so glad I followed my spirit and called....Tesa I am calling you tomorrow....
Well everyone..so long..goodnight..rest as well as you can and I will visit again soon....Love to all..May Jehovah bless you and keep you safe and strong.....many hugs....your sister..your friend....Clare.....
That is what I want to hear, that we make you and everyone else feel like family.
We all share a common bond called Lupus/MCTD something our birth family does not have or understand.
But this family here does.
I'm so glad you found us and that you so much for tonights surprise phone call!

Take care,
With Love,
Kathy

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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.
www.LupusMCTD.com Represents:
1) We are patients helping researchers build a future for the lives of others...
2) Where HOPE is a WORK In Progress
3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients
Crabbyla279
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« Reply #19 on: October 01, 2008, 10:05:03 pm »

Clare~
     They were HAPPY tears!  Hearing that the words I post here mean so much to someone, really just made my day.  After the day I had with the kids- we really have a lot of "young" 3 year olds this year.  I really can't believe that I am still up right now, I made my lunch for tomorrow- Cheeseburger Helper (added a little sour cream)- went to my late night chat on AOL for lupus (one of the few things I will keep AOL as a "browser" on my computer for) and now I'm here replying to you.

     I do know what it is that is physically keeping me awake- pain!  My right cheek is aching something fierce.  A bit of a delayed reaction from Monday's fillings perhaps?  I am guessing that is the case, and the next order of business is for me to take my Tylenol and try and get to sleep soon!  It's swim/gym day tomorrow (today now lol.)  Oh, I'm getting a little rumbly in my tumbly lol.  Signing off!
luvs ya bunches~
Lacy Ann
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« Reply #20 on: October 04, 2008, 03:56:11 am »

 hrt  gsmile prplbtfy  Hello...Good Morning to all....Katsu, Tesa, Kim, Lacy Ann, all my family....I was up and could not fall asleep again so I am writing you a note to say that you are on my mind....it is 5am florida time and the birds are singing outside my window...Thank you for all your nice notes...Lacy Ann, Katsu, Sista Kim...I really appreciate the sense of *Belonging*  I was telling Scott about all of you and he is really happy that I have you...He agrees that when Igo to see his Mom in Kernville that I should make the extra miles to meet you Katsu and Kim....that will be awesome....Ihope your nights have gone well...Lacy Ann they say tears cleanse the spirit so I am glad I can give you happy tears...Mt meaning to call gets out of hand...after being up for awhile I sit or decide to rest for maybe *just ten minutes* that is all I will say..then that turns into umpteen minutes and then it is too late..it may seem I am untrustworthy regarding that but if you knew how often my mind finds you...sisters of my heart...family of my spirit though I have not met everyone on this site..*The Hope Bracelet* flies around for you....You are the reason behind Kathy's organization...We love you all and care for each one of you as a real family should...because I do not know names or faces does not prevent me from mentioning you to my Heavenly Father Jehovah through His Son Jesus...He is the source of my strength, my hope, my joy....that is why I share my thoughts about Jehovah...We all have difficulties and we cannot walk in another's shoes even when we have similar diseases because as Katsu says..each person is different, each person's load is not the same...so that goes to show even if we have the same shoe size..we still will not fit comfortably in someone else's because our feet are formed differently so we wear the shoe down differently..some are lopsided..some the tip goes up..some have holes in them...and some are just not able to fit because there is so much more than what can fit in a shoe....Do you understand what I am trying to say?   With this *Hope Bracelet* flying to all the States..think of yourself going along with it...let your Spirit capture the *Rhythem* of flight...Imagination is something that can take us far away from our worries...I know how many concerns there are out there...but when we find a special inside our minds...in our hearts...where we can disappear within and find Peace...just for awhile..we can breathe..and forget...even though the pain is excruciating...YOu know the ruler of this wicked system of things is satan the devil..a wicked evil angel who has been cast out of Heaven..seeking who he can devour and destroy...he he is the one creating havoc on good people....financially, physically...The *MIND* is his playhouse and satan and his cohorts..the other wicked angels that are cast out with him...will mess with your thoughts..the wicked one will throw darts at you and wear you out if you let him...each thought you have that is making you feel crappy or otherwise is not from the Heavenly Father...though He allows thes things to happen....one of my favorite scriptures pertain to the man Job...Righteous in all the land...See how satan thwarts Jehovah....the unholy demon challenged us through Job..challenged God's integrity and ours...if you all get a chance read that story....you will see that sometimes family and friends do not understand what is going on with our disease..just as in Job's time..they said he had sinned..his three friends..only Elihu..a much younger man was close in his reasoning..even his wife said curse God and die...but you realize she was depressed, losing all her children and the life she had become accustomed to....sitting in dust and ashes is humbling and the despair nust have been tremendous for Job..but he never lost his integrity nor did he curse or blame Jehovah....
So family..friends...Ileave you in Jehovah's LOve and care...He gives us strength to endure these things that befall the adamic nature...because of the foolishness of one man adam....but through the ransom sacrifice of the other Adam..Jesus Christ...we are able to have life everlasting life...through this Heavenly Son who came to earth to die so that we might live through Faith in Him..as this system of things create confusion..be certain that it is not forever...all this will pass and there will be a new system where nothing as we know it will exist..no more pain, suffering, death, no more fighting the government for assistance instead of them sending thousands to Sweden they would look first at homeland and say let us begin from within our own country then branch out to the moon....but you see they have their priorities all messed up...we need a new Government..we need Jehovah's organization...believe me it will happen but in God's time..He says one day is like a thousand..a thousand like one day..but this is where 2nd Peter 3 comes in where it says "God is not slow respecting His promises....He is patient because He does not desire any to be destroyed but desires everyone to attain to repentance"
What I have..what I know..is what I share...I encourage you to not give up on *YOU*  to continue reaching out to us...you are the reason for this website...The *Hope Bracelet* should be at Lacy Ann's at least by today....that is Massachusetts....and the Fall colors are out...I hear it is beautiful now...I spoke with my daughter who lives in connecticut..New England..so think of playing in golden, red, yellow, green leaves...bon fires and marshmallows by the fire roasting...moonlit nights with family, friends....just imagine the *Hope Bracelet*  our Hope.....our desires...I understand what you are going through...please rest well..if not sleep then rest in your spirit...I am speaking to everyone...Take care of you today...do something special for just you...I send myself postcards once in awhile..I send a letter to myself for when I am having crummy days that is filled with good thoughts that build me up...sometimes when I can afford to I buy myself flowers...and these days I buy Black Jack Cherry Frozen yoghurt and I have a nice bowl..it has chocolate chips and black cherries...it feels good on my throat and I savor each bite....so take time to breathe....close your eyes and empty the madness...shut out everything but your breath...relax youe shoulders and push the clean air through your lungs to your toes...play something easy...think of a place where you feel safe and keep it as in indelible memory where you can go to regardless of where you are..however noisy, confused....you have the power to unlock your *PEACE*  no one can take that away from you unless you allow them....
I am praying for you all....Not one day goes by without thinking how you all are....REmember that even Jesus..our Great HIgh Priest was touched with our infirmities and He makes intercession for us to our Heavenly Father every day Hebrews 7:25...All of Hebrews is good to read if you want to know more about Jesus being our High Priest....
WEll..I am feeling tired again so Iam going to try to rest some more....I love you with Jehovah's love..unconditionally *AGAPE*  sending many hugs...Have as wonderful a day as you can...REMEMBER...*YOU* are NOT ALONE.....May Jehovah's angels find you where you are and comfort you..Peace, JOy, LOve....Faith..Hope....HUg yourself today..Ummmmmmmm big hugs...So long...Clare
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« Reply #21 on: October 04, 2008, 08:45:28 am »

Good morning, friends~
     I received the bracelet yesterday, and will be sending it on its way by week's end hopefully (I don't get paid until next Friday so what I want to do with it must wait till then) but most definitely will be off before I leave for the family reunion on the 17th!

     That said, I had "happy" tears in my eyes as I read all the kind words of encouragement.  I certainly find myself a lucky lupie to be here and NOT have had the trials and tribulations that others have had to face.  Sure, I've had my own battles with this great wolf that is our companion for life, but he loses more than he wins and for that I am eternally grateful.  If he won more often, I don't think I would have completed school, or gotten a job... or just plain felt like life was worth living.

     Finally, a thought came to mind last night as I sat at the kitchen counter eating my dinner- and the rest of the family sat at our dining room table (long story, will tell later)- my middle sister, Corey/Kouri (depends on how she chooses to spell it, she takes it either way) was complaining to my mom about her hair loss and how her doctor is now testing her thyroid.  I wanted to shout at her- the thyroid isn't the only thing that makes you lose your hair!- but I didn't, in fact I couldn't say anything at all because I was basically an invisible person to them last night.  There are so many other things that could be causing her hair loss, the least of which being The Wolf himself.  I never would wish this on anyone, let alone family, but the fact remains that it is possible.  And that just because I was able to get diagnosed correctlly in a relatively short time frame, doesn't mean she will.  In fact, due to her status with the government, they just might keep her "in the dark" all that much longer!  It makes me really angry when I think of that possibility!  Here is my sister, 27 years old, and has tried every known treatment she can to clear up her fertility problems, and now this?!  I really feel that one if not both of my sisters has some form of this Wolf, and for that I feel partially responsible.  Responsible, because as the older sister, I should be more proactive in getting them to learn from my medical experiences, and make them sit with their doctors when stuff isn't going "right" and then tell the doctor- "Listen,my family has a known history of various autoimmune things including x,y, and z..." I want them to at least find out if they have the genetic markers for it.  Just because I triggered mine when I was a teen doesn't mean it won't happen to them later in life.  I worry about this stuff, even more so when I see how hard a simple sinus infection knocks my youngest sister, Phoebe, down.  I worry that she is going to end up with rheumatoid arthritis with the way she is constantly cracking her joints.  I worry that she isn't listening to me when I tell her that she needs to be more aware.  I look at her sometimes, after a particularly hard day out in the sun, and I think "is she getting a 'Butterfly' rash?"  But I keep quiet.  Don't want to scare them, set them up for life of struggle and disappointment.
Enough for now, off to start my glorious Saturday!
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« Reply #22 on: October 04, 2008, 11:17:30 am »



 CandleSmilie

Lacy Ann and Clare~

Your words really moved me this morning, thank you both for sharing so deeply. You both really touched my heart and choked me up.

Lacy Ann, I'm so glad that you got the bracelet yesterday! I understand your concern and private worry about your sister's health, and potential future issue's with the Wolf, or any other kissing cousin AI disease. I too, have had a mixture of feelings with my siblings throughout the years. Loving family members is sometimes tedious on the emotions. I find it amazing how I can be upset with them and still be equally worried and concerned for them and their well being. All the while longing for closeness with them.

Clare, thank you for sharing your encouraging words of being God dependant while having a human experience with the Wolf. You know, that is one of my greatest joys and challenges!  litbflys

 I think that the bracelet has traveled roughly, 4000 + miles thus far. I'm very excited about the journey of the bracelet and especially that we are all linked to one another. Everyone be blessed, take care and have a great weekend.
With Love and Hugs,
Kim
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« Reply #23 on: October 04, 2008, 12:27:56 pm »

Quote
I think that the bracelet has traveled roughly, 4000 + miles thus far.
That's a Big 10-4 Miss Kimmy
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« Reply #24 on: October 04, 2008, 12:42:50 pm »

Lacy Ann..Kim...Katsu..Debby..everyone..hope all is well...I am glad you received the *Hope Bracelet* Butterfly litbflys...awesome...Your post is on my mind...I have specifics to pray for now..thank you for sharing your spirit with us and for being such a good hearted woman...Your feelings are deep centered and I feel what you are not saying....I want you to know that I love you..we love you..I send you big hugs through the computer lines....I really hope you have a wonderful week end forgetting work if you can and just relax and take care of you....YOU ARE Special Lacy Ann....a tremendous source of encouragement...keep up the good work..sometimes it is not what we say it is how we say it and sometimes saying nothing at all is better than rocking the boat....I understand exactly what you mean though...Has your sister been tested for polycystic ovaries?  My daughter and sister has that and my sister had to get invetro..several attempts finally she has a wonderful boy..Lance..my daughter is 25 Philippa but she is still fighting her condition and has to be on Birth control to get a period....but you are right..sometimes these things are creepy crawlers..slowly they nab you when you least expect it...like my gypsey travelling pain spasms that go through my body my knees then attach itself to my feet..awful thing this is...throw it in the bonfire Lacy Ann...are yo having one at your family reunion?  that is wonderful to get together...I will talk with you before that...I see you clearly Lacy Ann.. YOU ARE NOT INvisible to us...big HUgs to you...
Thank you Kim for acknowledging my post...I hope your day is going well......Say hello to your beautiful daughter.....Have a great day and know that you are in my prayers....okay I am gone for now..love you all very much...talk to you soon..hugs...so long..Clare








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« Reply #25 on: October 04, 2008, 12:56:08 pm »

Quote
sisters of my heart...family of my spirit though I have not met everyone on this site..*The Hope Bracelet* flies around for you....You are the reason behind Kathy's organization...We love you all and care for each one of you as a real family should...
Amen, I second this!
Lacy Ann verification your family has grown larger and you have more sistas now. hrt
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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.
www.LupusMCTD.com Represents:
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2) Where HOPE is a WORK In Progress
3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients
Crabbyla279
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« Reply #26 on: October 04, 2008, 02:03:00 pm »

 bflybouncy Thanks everyone!  There are just some days where I need more encouragement to keep truckin on, I suppose!

I've got this week and the following to "get through" and then I'm off to the Adirondacks for the family reunion.  I just want to stop having these waves of hot then cold!  I mean, seriously now, I am getting teased- good naturedly of course- by co-workers about it.  I'm "too young" to be having hot flashes.  Doesn't matter that I tell them that in many ways my body thinks it is years older than what it physically is!  One of these days I am going to find that "real age" test and see what it says now that I'm nearly <gasp> 30!  Took it when I was 26 and it told me I was closer to being in my mid-to-late 30's!  Odd huh, but interesting still.

The week leading up to my family reunion, I've got Columbus Day "off" but have to go in for a "cleaning day" at the center.  Then I work Tuesday, Wednesday and Thursday.  Then that Friday (the 17th) I leave with my Aunt & her family in their RV.  That's a new development that got dropped on me when my my mom was on the phone with my uncle.  So, I'll either see if I can just sleep over my Aunt's house that Thursday or get up at my "normal work" time and drive over in time to get going.  They want to leave at 10 Friday.  I'll be bringing my laptop, my cell will be with me, and I'll have plenty to do!  I think I'll tell my cousins to pack their Uno Attack game.  We'll need something to entertain us along the way!

Thanks again everyone!
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« Reply #27 on: October 21, 2008, 08:15:14 pm »

Quote
  I received the bracelet yesterday, and will be sending it on its way by week's end hopefully (I don't get paid until next Friday so what I want to do with it must wait till then) but most definitely will be off before I leave for the family reunion on the 17th!

Honey,
Have you mailed the bracelet to someone yet? If so, let me know what state and the date OK?
I have a map we are keeping tabs on it's where abouts.
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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.
www.LupusMCTD.com Represents:
1) We are patients helping researchers build a future for the lives of others...
2) Where HOPE is a WORK In Progress
3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients
Crabbyla279
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« Reply #28 on: October 22, 2008, 03:28:50 pm »

Momma~
     I am almost ready to mail it out... funds depleted to rapidly for me to mail it before my family reunion trip.  I get paid this Friday, and after I pay for my cell phone, and get the money I owe the court (that's another story for another time) I can get the bracelet off and flying!  Which reminds me, I need to get my note finished!  Started that on the Sunday before I left for my family reunion... had to close it up when family arrived- it was the night we had so many here for Lasagna- and I'd plain ole forgot about it!  YIKES!  Better get moving with it if I want it printed up and ready to go by Saturday (half an hour just goes by too fast to get it all done Friday) morning.
luvs ya bunches~
ME
P.S.~ I'll be taking a nap in a few, my cold has turned into a fight with a sinus headache, aggravated by some cinnamon scented pine cones that were on display in our class room's science area.  I've eaten, need to clean up, take care of the dog and then lay down for a little bit.  Talk to you all later!
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« Reply #29 on: October 22, 2008, 04:06:39 pm »

Momma~
     I am almost ready to mail it out... funds depleted to rapidly for me to mail it before my family reunion trip.  I get paid this Friday, and after I pay for my cell phone, and get the money I owe the court (that's another story for another time) I can get the bracelet off and flying! 
luvs ya bunches~
ME

OK Sweetheart, just need to know where she's at and going to next. I'd like to get her all finished and back before the end of the year before we start the International one, lol but it looks like we will be going into spring by then. It doesn't matter, just as long as this bracelet doesn't get lost like the first one.

THank you for getting back to me on it's location!!!!
Love you bunches,
Momma, AKA Floyd (don't ask...well ask Tyler he named me that)
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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.
www.LupusMCTD.com Represents:
1) We are patients helping researchers build a future for the lives of others...
2) Where HOPE is a WORK In Progress
3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients
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