BUTTERFLIES AMONG US

LUPUS/Fibromyalgia and more: Support for all

Living in Michigan, you can tell the difference in the mood of people at the first sign of spring. The energy alone that the sun brings out in others; kids outdoors; neighbors taking walks, just enjoying themselves. Why can't I feel that same way??? What is wrong with me? Could it be that it was the same time of year that I was so sick I nearly lost my life to Lupus that it brings back all the memories I relive each year? I know the sun is not my friend and unlike others, I enjoy the cloudy days over the sunny ones. I am feeling bouts of depression and although i am on medication, which i have been on since my last flare in 2004, i still feel a bit helpless. I try my best to put on a 'face' for my son so he doesn't see my flaws, but it becomes more and more difficult. I don't feel like i have much support... from the one i need it from the most.

Share 

Comment

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

Join this Ning Network

Sunshine Comment by Sunshine on May 14, 2009 at 5:22pm
Hello, Julie you are not alone in this. We all understand what you are going through. Everytime the season change, my body change, it carry me through so many changes. I get very depressed when the season change, because my body aches so much. I have to go to the hospital alot. At times I am in the hospital more than I am home. Like right now it is spring and soon it will be summer, the time when I am very depressed because I can not be in the hot sun.
Kelly Comment by Kelly on April 17, 2008 at 12:11am
Hey....I understand your issues, but winter is my worst time of year. I'm all achey and I get really depressed. With all the colds and flu going around I stay really sick. Its a relief (even if i can't be in the sun much) when spring roles around and I wake up in the morning to hear the birds singing. Spring makes me remember that things change. It makes me feel like I can get threw anything because I got threw a long cold winter. The bad times in our lives are like winters. They seem like they will never pass and things will never get any better, but sooner or later spring has to come around. It may not help you any, but it helps me to look at it like that. I wish I could help you and make all the bad memories go away, but all I can say is maybe one day they will fade as you replace them with happy memories. The closest I ever came to the unmentionable D word was when I had my first daughter. I wasn't completely out of the woods for 6 months. I resented her for a long time, because even holding her reminded me of how close I came to it. You say when you have kids you'd die for them, but I wasn't prepared to do it bringing her into this world.....I felt like a horrible mother for a long time, because I resented her. Sometimes you just have feelings or reactions to things you can't control. Anyway, before I write a book in response to your blog....I hope this helps you some.
Butterfly Kimberly Comment by Butterfly Kimberly on March 25, 2008 at 5:07pm
Hi Julie, nothing is "wrong" with you! I'm sure there are so many of us that feel the same way. A lot of us can't be in the sun. Some can.....I don't see how, but they can. We are all like snowflakes, not one of us is the same! We are all here for you, don't ever forget that! BLOGS are great for venting, and that is exactly what this site is for, venting, support, questions, etc. As soon as our MESSAGING address book is back to normal (from NING), I will be sending out to everyone, to make sure that they every now and then take a look to the left side of the MAIN page to see other members BLOGS. I am noticing that some are going un-noticed. If you feel like it, you can BLOG AND POST A FORUM with the same words from your BLOG. I think the FORUMS seem to get the most attention. I just want you to know you are NOT alone! I'll be in touch....and I hope things are going okay for you lately. HUGS~Kimberly

Badge

Loading…

Forum

colsbutterflies

ANYBODY LIVING IN FLORIDA?? 7 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 ON…

Started by colsbutterflies in I'M IN NEED OF SUPPORT PLEASE!!. Last reply by John A "Dad Butterfly" 12 hours ago.

julie

Lymphoma, or just the lupus??? 23 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 was…

Tagged: lymphoma, Lupus

Started by julie in I'M IN NEED OF SUPPORT PLEASE!!. Last reply by colsbutterflies 1 day ago.

Butterfly Kimberly

THE SPOON THEORY 39 Replies

ALL OF US SUFFERING FROM INVISIBLE ILLNESS AND DISABILITIES MUST READ THIS! IT IS AN EXCELLENT WAY TO DESCRIBE WHAT WE GO THROUGH TO OTHER PEOPLE WHO DON'T UNDERSTAND US. THIS GIRL SPOKE ABOUT LUPU…

Tagged: lupus, theory, don't, sick, spoons

Started by Butterfly Kimberly in MISCELLANEOUS. Last reply by Donna J Farr Dec 14.

Donna J Farr

Hello Everyone 6 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 Mond…

Started by Donna J Farr in MISCELLANEOUS. Last reply by Donna J Farr Dec 9.

Allison Abrusci

Plaquenil/Memory 3 Replies

I have a few questions for my fellow Lupie's. I was diagnosed with Lupus at the age of 16 but it didn't become active with SLE until August (I'm 25 now). I have been on Plaquenil or about 6 weeks now…

Started by Allison Abrusci in MEDICAL QUESTIONS. Last reply by Tina Romine Dec 8.

Roxanne

New Here 2 Replies

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 (blood…

Started by Roxanne in INTRODUCTIONS/PERSONAL STORIES. Last reply by Donna J Farr Dec 3.

Sandy Medine

Update Dec. 1, 2009 by Sheldan Nidle

-------------------------------------------------- Dec. 1, 2009 by Sheldan Nidle for the Spiritual Hierarchy and the Galactic Federation 3 Chicchan, 8 Yaxk'in, 5 Caban -------------------------------…

Tagged: Sheldan, Nidle, by, 2009, Dec.

Started by Sandy Medine in NATURAL REMEDIES, HOLISTIC, HERBAL, ETC Dec 2.

Sandy Medine

Update Dec. 1, 2009 by Sheldan Nidle

-------------------------------------------------- Dec. 1, 2009 by Sheldan Nidle for the Spiritual Hierarchy and the Galactic Federation 3 Chicchan, 8 Yaxk'in, 5 Caban -------------------------------…

Tagged: Sheldan, Nidle, by, 2009, Dec.

Started by Sandy Medine in NATURAL REMEDIES, HOLISTIC, HERBAL, ETC Dec 2.

Niki

Scared about Cytoxan 3 Replies

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. Do…

Started by Niki in MEDICATIONS. Last reply by Carla Giacoio Dec 1.

joy

anyone with fibro living inyorkshire England 1 Reply

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 h…

Started by joy in DO YOU LIVE NEAR ME?. Last reply by Carla Giacoio Dec 1.

Dotti Obert

In Severe Pain 5 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 a…

Started by Dotti Obert in I'M IN NEED OF SUPPORT PLEASE!!. Last reply by Shelly Binkley Nov 30.

Michelle

My Hysterectomy and HRT 2 Replies

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 f…

Started by Michelle in MEDICAL QUESTIONS. Last reply by Shelly Binkley Nov 30.

Kiara

Has anybody been diagnosed with lupus with a negative ANA? 34 Replies

I've only met 2 persons, and obviously myself!!! Hope to read from you guys!!!!

Started by Kiara in BLOOD WORK. Last reply by Shelly Binkley Nov 30.

Vee Marie

Fibromyalgia & Disability Benefits? 10 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 is…

Tagged: input, info, advice, ssa, disability

Started by Vee Marie in OTHER QUESTIONS. Last reply by Shelly Binkley Nov 30.

Amy Jill

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 i…

Started by Amy Jill in MEDICATIONS Nov 24.

Sandy Medine

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 possib…

Tagged: TO, HAPPEN, ABOUT, IS, WONDERFUL

Started by Sandy Medine in MISCELLANEOUS Nov 17.

Joey

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.

Donna J Farr

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 evert…

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

Sandy Medine

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 b…

Tagged: on, based, Jampolsky, A, Course

Started by Sandy Medine in MISCELLANEOUS Oct 31.

Sandy Medine

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.

© 2009   Created by Butterfly Kimberly on Ning.   Create a Ning Network!

Badges  |  Report an Issue  |  Privacy  |  Terms of Service

Sign in to chat!