LUPUS/Fibromyalgia and more: Support for all

Niki 33, Female Chillicothe, Ohio United States: Share

Blog Posts (18)
Discussions (22)
Events
Groups (1)
Photos (53)
Photo Albums
Videos

Niki's Apps

Niki's Friends

View All

Music

Loading…

Niki's Groups

MEMORY LANE

81 members

View All

Niki's Discussions

Scared about Cytoxan
2 Replies

Started this discussion. Last reply by Niki Oct 21.

Come on in and have a seat.

so far so good, I think. go back to nephrologist on the 25th this month Nov 12

Gifts Received

Niki has not received any gifts yet

Give Niki a Gift

Latest Activity

Niki updated their profile

November 11

so far so good, I think. go back to nephrologist on the 25th this month

November 11

Niki added a discussion

Scared about Cytoxan

I had a kidney biopsy last Friday. My Dr called today saying he was going to take me off the Imuran and start Cytoxan treatment for 2 months. I've been reading up on this med and it has me scared. Does anyone else take this? How does it affect you...

October 20

had biopsy. I am now at stage 4 of renal failure. Going to try Cytoxin to see if that helps for the next 2 months

October 20

Profile Information

Where did you grow up, and where is your home now?

I grew up in, and have temporarily moved back to, Chillicothe, Ohio.

Do YOU have.... LUPUS ~ Fibromyalgia ~ CFS (Chronic Fatigue Syndrome) ~ Migraines ~other? OR are you here supporting someone?

Systemic Lupus/Lupus nephritis (dx 1998), GERD, Prolonged QT Syndrome (heart related) (dx when I was 12 or 13)

**EVENTS** (b-days, etc.) tab is at the top of the pages. When you are done registering you can put your info in at any time. You can enter Birthdays (Family member b-days too), Anniversaries, Fundraisers, Walks, etc.!! Enter your info there if you'd like to share!

July 21 - Birthday Dec 31 - Anniversary (dating)

Myspace, Facebook, Twitter or other? If you want to share, please POST YOUR (url/usernames and WHAT social site you belong to) for others to find you and vice versa :)

www.myspace.com/crazy_biotch_woman
Niki Fulton Smith on Facebook

QUESTIONS & FEARS??(Although some read other member pages, questions are best to be entered and type in the FORUM :)

Being on dialysis or needing a transplant. My dr has told me I have stage 4 kidney disease.

(knock on wood) I've never been in the hospital for my Lupus. But, I'm scared I will be.

Dying painfully

Losing my family to something tragic

Do you find this site helpful from what you have seen on the main page and anywhere else you may have looked at? Any suggestions or ideas?

Yes, I do find it helpful.

Would you refer others?

yes

Most Important, how did you hear about this site?

Lori

Your LUPUS BUTTERFLIES AMONG US Box

Cararay~Me add cute friends love pretty romance royalty self smile stuff

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

THE BEST animated baby classic dating friends heart kids love married romance

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Niki's Photos

Loading…

Niki's Blog

why i havent been online

Just wanted to let everyone know why I've been "missing". I've been really sore lately. That is caused by stress. My fiance, who is epileptic, had 3 seizures at the end of July. He's been in the hospital in a drug induced coma since then. He just started coming out of it the other day. I've been with him everyday.
At least this time I know why I've been sore. From stress, lack of sleep and uncomfortable waiting room chairs/couches. There was improvement this morning, and i feel better today than… Continue

Posted on August 19, 2009 at 8:00am —

An update

I have been doing pretty good. Mike and I spent a week in his hometown in NY the week of July 4th. I was ok the first couple days, then I got sore and it never really went away. Even with the increase of prednisone. Sometimes I dont think the prednisone is working. Like the dosage should be higher. I try to deal with it though, because I dont want a higher dose.

My ankles have been swollen alot lately. So much that sometimes my house slippers are the only shoes that fit. I have to do a 24 hr ur… Continue

Posted on July 15, 2009 at 9:46pm —

Rough night

I had a rough night last night. I was so sore, but not from joint pain. It was all muscular. Except for the fact my thumb was swollen. I went to bed about 9ish. I laid there and played a game on my phone. I got chills, then I was too warm, then chilled again. It hurt to breath deep and my chest hurt to lay on my side, which is my fav. position to sleep. I got up and went downstairs. The bottoms of my heels hurt so bad to walk on. I talked to Mike and told him that if for some reason my lupus is… Continue

Posted on May 28, 2009 at 8:22am —

Update

Well. I've been ok. Not great, and I've been worse. Not only am I battling with Lupus right now, I'm battling with my son too. He's been stealing and lying about it, trying to "negotiate" to not be in trouble for it. He's 7 years old! Anyway the stress from that isnt helping anything. I've been sore off and on since December. My hemetologist called me a couple weeks ago and said I needed to have bloodwork redone. While I'm waiting to be called I noticed that on the lab slip he's checking for leu… Continue

Posted on May 24, 2009 at 5:22pm —

A scary couple days

I went to statcare on Sunday night. I was having a hard time breathing. It hurt to breath in deep, my pulse raced when I went upstairs, and I had a fluttery feeling in my chest. After talking to the dr he said they would have to do more tests. They took me to the ER. I had blood work and a CT done. Everything came back ok except he said I was anemic. He said that will "wear out" the body making it think it was exerting itself causing the shortness of breath. So I came back home. Monday while I w… Continue

Posted on November 28, 2008 at 9:52am — 1 Comment

Comment Wall (60 comments)

You need to be a member of BUTTERFLIES AMONG US to add comments!

Join this Ning Network

At 9:34pm on March 22, 2009, Kevin Simien said…: MyHotComments

At 12:26pm on May 4, 2008, Ali said…: Hello, sorry I haven't been on here as much. My job has had me running around like a chicken missing his head....LOL
I am doing well, hope you are the same. Have an awesome week.
Virtual hugs,
Ali

Friendship Comments

At 9:53am on April 30, 2008, David said…: Hope all is well.

At 11:22pm on April 26, 2008, karen said…: glitter-graphics.com

At 12:31pm on April 7, 2008, Ali said…: MySpace Comments

At 11:34pm on March 29, 2008, karen said…: Free Comments & Graphics

At 11:27am on March 26, 2008, Butterfly Kimberly said…

At 10:08pm on March 23, 2008, karen said…: Free Comments & Graphics

At 7:24pm on March 23, 2008, David said…

At 12:47pm on March 23, 2008, Ali said…: HAPPY EASTER MY FRIEND:) MAY IT BE A DAY OF RELAXATION AND PAMPERING.
AIi

Free Comments & Graphics

No comments yet!

View All Comments

Welcome to
BUTTERFLIES AMONG US

Sign Up
or Sign In

About

Butterfly Kimberly created this Ning Network.

Create a Ning Network! »

Badge

Loading…

Get Badge

Forum

ANYONE HERE EVERY BEEN ON XYREM / SODIUM OXYBATE

Hello, I was just wondering if anybody here has tried Sodium Oxybate or Xyrem for sleep. I have been going back and forth with this for over a year. But last week when I got my pharmacy newsletter...

Started by Amy Jill in MEDICATIONS 9 hours ago.

Hello Everyone 4 Replies

My Back Surgery has been post poned, so I really don't know when they rescdudle again My Headake are getting worse so it will be a while before they reschdudle. I have to see my family Doctor on Mo...

Started by Donna J Farr in MISCELLANEOUS. Last reply by Donna J Farr 17 hours ago.

My Hysterectomy and HRT 1 Reply

I have Lupus, MCT, Sjogrens syndrome and low b/p, my list does grow. I recently had a total abdominal hysterctomy. I was loaded with endometriosis, I no longer has my ovaries, cervix and everything...

Started by Michelle in MEDICAL QUESTIONS. Last reply by Donna J Farr Nov 22.

SOMETHING WONDERFUL IS ABOUT TO HAPPEN

August 28 , 2008 SOMETHING WONDERFUL IS ABOUT TO HAPPEN The What's Up On Planet Earth? energy alerts are offered several times per month by viewing them here. Your financial support makes it poss...

Tagged: TO, HAPPEN, ABOUT, IS, WONDERFUL

Started by Sandy Medine in MISCELLANEOUS Nov 17.

Fibromyalgia & Disability Benefits? 8 Replies

Has anyone in here with Fibromyalgia had success being approved for SSA Disability Benefits? If yes: any helpful pointers? I just got off the phone with an advocate who told me that Fibromyalgia i...

Tagged: input, info, advice, ssa, disability

Started by Vee Marie in OTHER QUESTIONS. Last reply by Mary Castle Nov 14.

Need Buddies in OHIO 1 Reply

I live near Cleveland in Ohio.... anyone out there in the same area?? I have no friends with autoimmune diseases that live near me! :( Thanks, Joey

Tagged: ohio

Started by Joey in DO YOU LIVE NEAR ME?. Last reply by Michelle Nov 14.

anyone with fibro living inyorkshire England

Hi my name is Joy I am 46yrs old I live in Barnsley sth Yorkshire, I was diagnosed with Fibro and CFS 2 years ago and searched many sites and places for other people with the same condition, I have...

Started by joy in DO YOU LIVE NEAR ME? Nov 13.

New Here 1 Reply

Hi, my name is Roxanne I'm 21 years old. I was diagnosed with Lupus when I was 20. I also have another Autoimmune Disease Antiphospholipid Antibody Syndrome. I have Endometrosis, MTHFR Disease (blo...

Started by Roxanne in INTRODUCTIONS/PERSONAL STORIES. Last reply by Stacey Mommy to many Nov 12.

Lymphoma, or just the lupus??? 21 Replies

Hi everyone! I recently saw my doctor who told me my lupus was flaring. But because my doc also noticed a swollen lymph node on my neck and I had some symptoms such as night sweats and itching, I w...

Tagged: lymphoma, Lupus

Started by julie in I'M IN NEED OF SUPPORT PLEASE!!. Last reply by Stacey Mommy to many Nov 12.

ANYBODY LIVING IN FLORIDA?? 3 Replies

I AM SERIOUSLY THINKING OF MOVING TO FLORIDA FROM PHILLY. THIS WILL HELP MY FINANCIAL AND EMOTIONAL STRESS GREATLY. SO I WAS WONDERING, IF WE HAVE ANY FLORIDA LUPIES, AND HOW THE CLIMATE THERE IS O...

Started by colsbutterflies in I'M IN NEED OF SUPPORT PLEASE!!. Last reply by John A "Dad Butterfly" Nov 9.

Surgery/Nov 10th 2 Replies

I am so afraid so afraid of this surgery, It is surgery on my back. I have degenerated disc disease in L4 and L5 is just about nothing there. The surgery will take 8 to 10 hours and I just pray eve...

Started by Donna J Farr in I'M IN NEED OF SUPPORT PLEASE!!. Last reply by Donna J Farr Nov 9.

The 12 Principles of Attitudinal Healing ~ by Dr. Gerald Jampolsky based on A Course In Miracles

The 12 Principles of Attitudinal Healing ~ by Dr. Gerald Jampolsky based on A Course In Miracles ~ a way to see differently ~ not a quick fix but a process to apply to any situation that ultimately...

Tagged: on, based, Jampolsky, A, Course

Started by Sandy Medine in MISCELLANEOUS Oct 31.

The Cancer Cure Video that circled the globe in 31 minutes

Go watch the video by going to the following webpage: http://tracking.ilinkmd.com/Partner/14774

Tagged: globe, in, 31, minutes, the

Started by Sandy Medine in NATURAL REMEDIES, HOLISTIC, HERBAL, ETC Oct 22.

The Cancer Cure Video that circled the globe in 31 minutes

The Cancer Cure Video that circled the globe in 31 minutes by Danica Collins t's not everyday that I find a good reason to send an e-mail to my entire address list. Today, I sense a moral oblig...

Tagged: globe, in, 31, minutes, the

Started by Sandy Medine in NATURAL REMEDIES, HOLISTIC, HERBAL, ETC Oct 22.

Scared about Cytoxan 2 Replies

Started by Niki in MEDICATIONS. Last reply by Niki Oct 21.

Finding a Cure

Your Lid Matters, with Yoplait and Dr. Funk The Wii Mommies would like to extend their welcome to Dr.Kristi Funk, a board-certified surgical breast specialist and an expert in minimally-invasive di...

Started by Amy Domestico in I'M IN NEED OF SUPPORT PLEASE!! Oct 20.

Quantum Physicist reveals how to master “The Secret”!!download free e-book

http://www.believeandmanifest.com/1/bam/index.php? “First Time I Used This Method, It Changed My Life Forever" Quantum Physicist reveals how to master “The Secret”!! From: Dr. Eric Amidi, Quant...

Tagged: http://www.believeandmanife...

Started by Sandy Medine in AWARENESS WORK Oct 19.

New Body Templates Coming Soon!

-------------------------------------------------- Beacons of Light ~ Re-minders from Home are now translated into 24 languages each month. Click on a flag below or see the Translation Page> -...

Tagged: Soon!, LIGHTWORKERS.COM, Coming, Templates, Body

Started by Sandy Medine in MISCELLANEOUS Oct 18.

In Severe Pain 4 Replies

I got up this morning, and the pain was so severe. I haven't felt pain so bad in a long time. I took my meds, and they didn't seem to make a difference at all. This makes me so tired to have to try...

Started by Dotti Obert in I'M IN NEED OF SUPPORT PLEASE!!. Last reply by Danielle McNeil Oct 18.