BUTTERFLIES AMONG US

LUPUS/Fibromyalgia and more: Support for all

DebrAngel
  • 54, Female
  • Gillingham, Kent
  • United Kingdom
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Lupus Rash?

Replied Dec. 31, 2007

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Replied Dec. 9, 2007

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At 12:37am on September 29, 2009, Running Deer said…

Hello my dear friend. I hope you are doing well now. I know it has been quite a while since I have been around but I have had problems with my PC and with me. I went through something the docs called Fibromyalgia Storm. It was one of the most horrible things I have endured. I was feeling pretty good before it happened and my doc said I was in remission like state. And then I stated aching and running a fever like I had the flu and went to my MD who said it wasn't the flu it was the fibro coming back. The pain got so bad I could not stand for water to run across my skin to take a shower and then I couldn't stand for air to blow across me. My muscles were in constant spasms. They put me in the hospital off and on (more on than off) for 3 months to just knock me out because the pain and the muscle spasms were more than I could stand with what meds they could give me at home. I was having seizures where I would just stare off into space. My diabetes was way out of control. My blood pressure was way too low. All of my lab work was messed up too.And then just as quickly as it had started it stopped. Everything started going back to normal and they have no clue why!!! Thank God it did because I don't think I could have taken mush more. I have graduated to a battery operated wheelchair and am working up to using a walker again.I have lost 89 lbs. and 3 months of my life. Have you ever heard of anything like this? Of anyone else having this in the UK? So maybe I can point my docs to some people that have dealt with it before. Well, Sister, I didn' mean to take up so much space. Remember I love ya and you are always in my prayers even when I'm loopy. God can even understand the prayers of the loopy ones like me!!! LOL...Blessings
At 2:22am on July 8, 2009, Techynana said…
Hi Debr I just stopped by to wish you well. I hope this week is a good week for you. Your friend as always Nanette/Techynana

now if this picture of me doesn't make you giggle nothing will. Love you honey:)
At 12:16pm on July 3, 2009, David said…

GO TO SUPERFLYCHICKEN.COM

At 12:05pm on July 2, 2009, alex said…
hi debra how are u doing sorry i have not been around for a while just back from the london lupus clinic again and the dr there said i now have to take 400mg of the plaq and see it that helps hope u are well alex
At 8:57pm on July 1, 2009, ,Martha said…


Tucmuc
Hugs and love
Martha
At 12:47am on June 27, 2009, Sandy Medine said…
At 12:29am on June 27, 2009, Shirldean Wood said…

At 7:07pm on June 16, 2009, Sandy Medine said…
MESSAGE FROM SOURCE-Remember Why You Are Here
At 10:59pm on June 5, 2009, ,Martha said…
Yuwie/MySpace Graphics
Yuwie&MySpace Comments at welovecomments.com Just stopping in to give you some hugs and let you know you are cared about
Love Martha
At 11:43pm on May 23, 2009, Kimber said…

MySpace Graphics

hello dear friend. hope this finds you well. things are going pretty good here. my lupus is still inactive.my fibro is very active. i miss you my dear friend.
lots of love and hugs,
Kimber

Profile Information

Do YOU have.... LUPUS ~ Fibromyalgia ~ CFS (Chronic Fatigue Syndrome) ~ Migraines ~other? OR are you here supporting someone?
APS and SLE with many things that go along with it!

On Monday, July 14, 2008 I was diagnosed with Fibromyalgia at the Lupus clinic in London, England.
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QUESTIONS & FEARS??(Although some read other member pages, questions are best to be entered and type in the FORUM :)
Never seeing my kids again!
Would you refer others?
yes and have done!
Most Important, how did you hear about this site?
Jayne

Your LUPUS BUTTERFLIES AMONG US Box


Butterfly Morph



People come into your life for a REASON, a SEASON or a LIFETIME. When you know which one it is, you will know what to do for that person.


When someone is in your life for a REASON, it is usually to meet a need you have expressed. They have come to assist you through a difficulty, to provide you with guidance and support, to aid you physically, emotionally or spiritually. They may seem like a godsend and they are. They are there for the reason you need them to be. Then, without any wrongdoing on your part or at an inconvenient time, this person will say or do something to bring the relationship to an end. Sometimes they die. Sometimes they walk away. Sometimes they act up and force you to take a stand.


What we must realize is that our need has been met, our desire fulfilled,
their work is done. The prayer you sent up has been answered and now it is time to move on.


Some people come into your life for a SEASON, because your turn has come
to share, grow or learn. They bring you an experience of peace or make you laugh. They may teach you something you have never done. They usually give you an unbelievable amount of joy. Believe it, it is real. But only for a season .


LIFETIME relationships teach you lifetime lessons, things you must build upon in order to have a solid emotional foundation. Your job is to accept the lesson, love the person and put what you have learned to use in all other relationships and areas of your life. It is said that love is blind but friendship is clairvoyant.


Thank you for being a part of my life, whether you were a reason, a season or a lifetime.

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WHAT YOU SHOULD KNOW ABOUT ME

My pain is not your pain. Taking your arthritis medication will not help me. I cannot work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is not well understood, but it is real.


My fatigue - I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can't. Please do not take this personally, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability.


My forgetfulness - Those of us who suffer from it call it brain fog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age, but may be related to sleep deprivation caused by chronic pain. I do not have a selective memory. On some days, I just don't have any short-term memory at all.


My clumsiness - If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.


My depression - Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many patients suffered from Chronic Pain as well as other related illnesses. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.


My stress - My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I'm not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.


My weight - I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My ability to control my appetite is broken, and nobody can tell me how to fix it.


My need for therapy - If I get a massage every week, don't envy me. My massage is not your massage. Massaging out is very painful, but it had to be done. My body is knot- filled. If I can stand the pain, regular massage can help, at least temporarily.


My good days - If you see me smiling and functioning normally, don't assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days, weeks, or even months. In fact, the good days are what keep me going.


My uniqueness - Even those who suffer from chronic pain are not alike. That means I may not have all of the problems mentioned above. I do have pain above, below the waist, and on both sides of my body that has lasted for a very long time. I may have migraines, hip pain or shoulder pain, or knee pain, but I do not have exactly the same pain as anyone else.
I hope that this helps you understand me,

I have shared these thoughts with many "Lupies", as we call our self, and they agree with me. So when you see someone at the store who gets out of the Handi-cap space and they look fine -- Do not judge them as you may Not know their Inner pain.


==== And always remember I LOVE YOU! ====


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Stop the sickness glitter-graphics.com This Monster does not control me I am forever standing proud and free I will not let it put me down I will soar beyond the clouds

This Monster does not have control
Of my Mind Body or Soul
I can sing out with the wind
I will stand up with Pride
I do have loved one by my side

This Monster will be controlled
If we can unite in the fight
This Monster will never win
When we are surrounded by Love ones and Friends

So When you see someone like me
Do not fringe or Walk away
Show me some kind of Love
Just say hi and smile
And I will return the same
For this Monster can't take my dreams away

(Tony Kenyon 2007)


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