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green_eyed_girl
New Member


Date Joined Sep 2007
Total Posts : 10
   Posted 9/24/2007 7:42 PM (GMT -7)   
    I really want to say thankyou to all of you who replied to the "i miss me" post.i found something in every reply that helped me move forward a little more. I would like to answer some of the questions that were asked...and comment on some of the responses.
    I am 35 years old...although at times i feel like that is 135. I have had issues for the past 14 years. I have been told in the early stages that it was "just growing pains". Then it continued. Another dr told me it was "baby blues". How baby blues makes your hair fall out and cause a rash...is still a mystery to me. A few years later it was"you are depressed due to multiple deaths in you family". Yes I was depressed but that was the minor part of what was going on with me.
    3 years ago I hurt my back at work. I worked in a nursing home as aCNA. The doc they sent me to said I hurt my back because I was over weight. Yes I am overweight...but that isnt why i hurt my back. The 2nd week i went to see her I was in what I beleive to be a flare. The rash was just starting on my face, my whole body hurt like never before,my skin was on fire,i had 2 boils, and i had a migraine for 4 days. I also told her i was having pain in my left lower side. She ordered a mri of my stomach.
    When i went back to get the results she told me I had polycystic ovarian desease. I didnt know what it was. She said I needed to lose weight....again i know! I asked why did my whole body hurt so bad. She asked what it felt like and i said "like my bones are being pulled out". She said "that is because you are fat...you walk on your legs and they are having trouble hold you up.
     I had it at this point. I was tired of being sick and getting the run around. i told her"then why do my arms and hands hurt so bad??....oh i know because i am constantly moving them while putting the fork to my lips>".
     The next visit she said she talked to another dr and they seem to agree that it seems like i might have Lupus...considering my history. I asked her what that was and what i should do about it and she said she couldnt help me with that because i am there for workmans comp on my back injury.
     I didn't and still dont have insurance. i am waiting to get on my hubby's insurance. I have since quit my job...it had gotten to hard physically. I started nursing school and then dropped out because i realized i am not who I use to be. I dont have the mental capability to do that job anymore. I couldn't remeber things....I think that is what I hate the most is the loss of precious memories.
     As soon as I get on insurance then hopefully I will get some kind of releif from the pain I am in. As for now I will work on something that I can control and that is my emotional health.
     In my original post I said something about feeling like I am in a battle and I am unprepared.....well I don't feel like that today. .....Today I am standing on the battlefield with armor on. I look to my right and to my left and I see other warriors----a band of sisters--preparing for battle with me. Some have knowledge that I don't...and they are willing to share. Some are stronger than me and they are reaching out for my hand to help me. Some are weaker then myself and I will lift them up as much as possible....but in the end when all else seems foggy and hopeless I know I have found a circle of friends to lean on and trudge forwards...come what may.
     I thank the heavens for you all because before I came here and found this board and all of you...i was weak...alone...losing hope...and in a very dark place.
 
on a lighter note>>i am sorry my posts are so long>>I will work on it. yeah
blessings
JOY

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/24/2007 7:48 PM (GMT -7)   
OMG . . . .

Joy said: Today I am standing on the battlefield with armor on. I look to my right and to my left and I see other warriors----a band of sisters--preparing for battle with me. Some have knowledge that I don't...and they are willing to share. Some are stronger than me and they are reaching out for my hand to help me. Some are weaker then myself and I will lift them up as much as possible....but in the end when all else seems foggy and hopeless I know I have found a circle of friends to lean on and trudge forwards...come what may.

Joy . . . you have distilled the essence of this board . . . this sister/brotherhood!! Thank you. You made me cry because you were able to put into words a very special feeling.

Your posts are not too long. There are MANY people who read here and never post . . . you have likely expressed the needs of many people when you wrote your topic and it has filled a great need in each of us.

Thanks again.

Blessings!


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

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PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 9/24/2007 8:34 PM (GMT -7)   
Joy,

You said it! You really have a way with words and I agree with Rosie that you've probably expressed the needs of many people. I'm so glad you are here and know that you'll be a vital part of the forum. It is what keeps me going.

(((Hugs)))

Pat
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin


green_eyed_girl
New Member


Date Joined Sep 2007
Total Posts : 10
   Posted 9/25/2007 4:53 AM (GMT -7)   
well thankyou both. I am so happy to be here. I have been reading the boards for a while and found so much hope and inspiration...in a time of my life when I was running low. I feel as tho I know all of you thru your words that I have read and felt it was time that you all knew I was here and appreciated each of you.
blessings--
JOY

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 9/25/2007 7:38 AM (GMT -7)   
Joy, you absolutely have the strength to live with this and triumph! I got a smile on my face when I read the same part of your post that Rosie hilighted.  Put on that armour and walk with us!
 
I'm not sure you realize how impactful your post is. I agree with the others, you have a wonderful way of expressing what you need to say.  You should write a book!
 
Keep the faith, the good fight. 
 
Lots of love
Ginny
I can do anything through Jesus Christ who strengthens me.  I have learned in whatever state I am in, to be content.  Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(stroke),Sjogren's, Raynaud's, seizure disorder, libman sach's endocarditis, vasculitis, sacroiliitis, Neutropenia, thrombocytopenia. Prednisone, Imuran, Coumidin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 9/25/2007 7:50 AM (GMT -7)   
Joy, your post was just wonderful. Like the others said, your words are amazing and you described exactly how I feel about the people here. I don't know how I would have gotten through some of my lowest points without the wonderful people here.

Your struggle with docs is sadly all too familiar too and I think you spoke for so mabny of us who have gotten the run around from docs telling us we're depressed or we are stressed out and tired moms or we are just too fat. I'm so glad you stood up for yourself and challenged what was being said to you.

It is great to have you here and you have probably already helped more people with your words than you can imagine.

((((Hugs))))
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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sharentrials
Regular Member


Date Joined Jul 2007
Total Posts : 261
   Posted 9/25/2007 8:24 PM (GMT -7)   
Hi, Joy. Recently I find myself reading more posts than replying, but I just have to say Well Said! This is an awesome group of people! Every reply holds words so very special. I have recently felt as though I am just being showered with compassion and understanding...from people I feel a true friendship with that I've never even met!

I know I personally have reached a point where I WILL NOT accept that doctor BS any longer! I am SO proud of you! Just hang around and hopefully we will all be able to keep each other lifted up for our individual battles with this stupid disease and its' attachments! Stay strong and take care,
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 10mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg

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