Hi everyone it's been awhile

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okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 4/27/2011 1:31 PM (GMT -6)   
have to apologize for not being around I have really been batteling what the right thing is to do. I step away from the group and then I come back just about the time I get back in the swing of things I get sick and fall on my face again. It's very unfair to others to be an encouragement to me when I'm to weak and tired to be there for them. I've had some anemia problems that have seemed to be getting worse and my kidneys are beginning to be an issue. of course my lungs are shot and unless their is a maricle that will not change.
I know there is a huge push on Lupus awareness month. so since I can't walk I have been making bracelets with many things including ribbons and butterflies and even a spoon. LOL. but again those are on my good days. I pray the weather changing with give me some good days.
I feel a few weeks ago and ended up in bed with my foot in the air for two weeks. WOW we are talkingone huge ugly foot! Fortunately nothing is broken. still in a ace bandaid but my foot was the size of a football and if you don't think pictures are important for your doctor I had a fill in and she saw the after swelling. and the picture. She made a point to come out and tell me that the picture really helped her to understand what was going on! Just a little tidbid for the newbies.
Well backs starting to hurt but I just wanted you to know I heard about redrose cry and I am so angry! and my prayers are with butterflake and she continues to make strides. I swear I hate doctors. I know they are important. Then again so is rat poison.
anyway my love and prayers to all of you old and new friends. Do what you have to do. Like i read yesterday DON"T give up 5 mins before they find a cure!
God bless
carol
,lisinopril,lortab,azithromyazin,nexium,temazepam,predisone,plaq.,pottasium,xopenex,advair,spirivia,Vitamin D, matolozone.
Dx lupus, scleroderma, high bp COPD, need lung transplant. cancer survivor, osteoporsis,
There are more things in heaven and earth, Horatio,
Than are dreamt of in your philosophy.
"Don't stop fighting" Do not go gently into the night-rage against the dying of the light!

phndoc
Regular Member


Date Joined Oct 2003
Total Posts : 495
   Posted 4/27/2011 8:11 PM (GMT -6)   
Okie, I's sorry you feel bad. Prayers for you. Here is a cup of coffee, sit and enjoy..
Take care.
 
Enjoy what you can today and leave the rest for another day.
 
Frank
 

dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 4/28/2011 9:15 AM (GMT -6)   
Hi (((Carol))), I've been away for awhile myself and have started to dip my feet in again :) It's nice to see some older folks (not older, you know what I mean :P) along with the newer ones.

I'm so sorry you are having such issues at the moment. Sounds like you are having some rough times. I hope things get better for you.

I think it's awesome that you are making the bracelets and ribbons. I wish I was creative because I would love to do that kind of stuff. I actually am registered to walk this weekend for the Lupus walk and I don't even know how I'm going to get through the entire 5K now. I asked my husband what was I thinking, and he asked if he should follow me with the car? lol I think he's going to register this weekend to be by my side.
DX:SLE, Sjogrens, Raynauds, Migraines, Occipital Neuralgia, Morphea (Localized Scleroderma), Iron Deficiency Anemia, IBS, Diverticulosis

Meds:Prednisone, Plaquenil, Sulindac, Tramadol, Topamax, Xanax, Imitrex, Fiorinal, Prenatal Multi, B12, Vit E, Calcium, Fish Oil, Biotin, Ferrous Gluconate, Baby Aspirin

okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 4/28/2011 5:40 PM (GMT -6)   
Hey girlfriend how are ya? good to hear from a young old friend lol.! I took pics of some I did on facebook. It's also been good therapy for me. Gives me something to do when I can't get out with the others to go campings and stuff. All the things I used to live for.
Just don't you over do it. You do what you can do and I think it's awesome your hubby is going to be there with you. Bless his heart. You know with all the cut backs we all need to count on each other. Plus everyone needs to write their congressman/woman and senators, and president and shout from the windows We're sick and tired and we're not gonna take it anymore! Until someone hears us.
Just remember when you've had enough you stop! No one expects you to give more then you can safely give.
love ya
carol
,lisinopril,lortab,azithromyazin,nexium,temazepam,predisone,plaq.,pottasium,xopenex,advair,spirivia,Vitamin D, matolozone.
Dx lupus, scleroderma, high bp COPD, need lung transplant. cancer survivor, osteoporsis,
There are more things in heaven and earth, Horatio,
Than are dreamt of in your philosophy.
"Don't stop fighting" Do not go gently into the night-rage against the dying of the light!

reddwolf
New Member


Date Joined Apr 2011
Total Posts : 1
   Posted 4/28/2011 9:41 PM (GMT -6)   
Hello Okie, it has been awhile since I have been on as well. Crazy as this sounds, not even sure what my user name was before. My lupus affects my memory so much and it frustrates me. I do remember a few of you on here though, at least thats something. I left because I am not as bad off as most on here and felt like I had no reason to complain when so many of you are worse off than me. I look forward to getting back with you guys. I have missed you all.

thanks,

Reddwolf

okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 4/28/2011 10:17 PM (GMT -6)   
Hi redwolf, LOL well considering you don't know who you are it's kind of hard to respond like we know each other LOL. tongue But i sure get the fog. I swear sometimes I got transported to casa blanca in the fog and rain with boggy. You should never compareyourself to others. Other people may be just where you are and can relate to you better than others. Sometimes I felt great. Somtimes I felt like a real creep becuz I was to sick to reply. I have not been around other groups except one and not very much. The people are really nice but the support is not there. Not like it is here. Here if you stick around open up to people. answer questions for others even if it's just to say hey I hear ya and i'm here for ya. That's all people really need. sure there are questions mostly there is fear and isolation. and if you can make someone feel they are not alone then that means everything.
I'm sorry your fog is so bad. Then again I have no idea how many times I've walked around the house talk to some one one the cell and getting angry while I tear the place apart looking for my cell phone. doing it one is one thing doing it twice in the same week is rediculous!
anyway
if you go back to some of the old posts your name might pop up. and I and really glad you are here. Even if you don't know who you are !
God bless
carol
,lisinopril,lortab,azithromyazin,nexium,temazepam,predisone,plaq.,pottasium,xopenex,advair,spirivia,Vitamin D, matolozone.
Dx lupus, scleroderma, high bp COPD, need lung transplant. cancer survivor, osteoporsis,
There are more things in heaven and earth, Horatio,
Than are dreamt of in your philosophy.
"Don't stop fighting" Do not go gently into the night-rage against the dying of the light!

redwolf
Regular Member


Date Joined May 2005
Total Posts : 88
   Posted 4/28/2011 11:03 PM (GMT -6)   
Hey Carol,

Thank you so much for the warm re-welcome. I found my old account info. It has probably been two years since I have been on. Just call me loopy :)

I know who I am once again.....

Oh and I do the cell phone thing all the time, probably everyday.


Redwolf

emmi
Veteran Member


Date Joined Apr 2005
Total Posts : 1529
   Posted 4/29/2011 12:03 AM (GMT -6)   
Carol,
I'm glad to see you back, I just wish you felt better. I will put that in an official prayer! I don't post much at all anymore, but I do check in every couple of weeks or so. I wonder about all of us that were so active on here once upon a time.

I agree with you that this is the best group around as far as support and caring goes. It's nice to see that continue with everyone that has followed. Having somewhere to come where you know you can rant or whine or have a pity party or celebrate a good lab report is so important. There is such a difference in sharing with others who actually experience what you do. Even though you know family and friends care, there's a difference.

Well, I picked this up from someone on here once upon a time: when the going is rocky or rough, tie another knot and hang on. Take care of yourself, Okie. Love your bracelet work. You are one amazing woman!

xoxo emmie
Limited scleroderma with lupus overlap, Sjogrens, Hashimoto's thyroiditis, Raynauds, GERD, Hashimoto's (or Autoimmune) Enchephalopathy, seizures due to encephalopathy, migraines, fibromyalgia

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 4/29/2011 3:02 PM (GMT -6)   
Welcome Back, Carol!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 4/29/2011 9:52 PM (GMT -6)   
Hey Emmi, did you see some of my bracelet work? Stacie was wearing one in the news paper. It was pretty cool. it's so good to hear from you. I didn't realize how bad I messed you guys.
Lynnwood hey girlfriend how ya doing? how's your vertigo did that ever clear up? Talked to Barb earlier they are still waiting on more tests. She's pretty wiped out so I thought I'd let her sleep and call her tomorrow.
take care
hugs
,lisinopril,lortab,azithromyazin,nexium,temazepam,predisone,plaq.,pottasium,xopenex,advair,spirivia,Vitamin D, matolozone.
Dx lupus, scleroderma, high bp COPD, need lung transplant. cancer survivor, osteoporsis,
There are more things in heaven and earth, Horatio,
Than are dreamt of in your philosophy.
"Don't stop fighting" Do not go gently into the night-rage against the dying of the light!
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