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okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 4/21/2010 5:45 PM (GMT -7)   
cry I will be the first to say I know I wasn't around most of the winter. The old timers here hopefully understand that winter is very bad for me. Either I am in the hospital or at home recovering which comes very slow. I still have nurses every week and home health care 3 days a week. I guess I should have tried harder to get here though.
Anyway I have been able to get here a little more since the weather is a bit better. To my surprise I have never seen it so slow. shakehead . I'm not trying to be critical but I am very concerned. We have truly formed a bond over the past couple of years. To the new people you may come here and think it's a click but I'm here to tell ya what it is mutual respect. There are days when each of us needs to rant there are lots of questions and there is just needing someone to listen. Now here is the tricky part. When you have those feeling you should not be shy about posting and expecting someone to help you. The thing is no one is obligated to do that. So the best thing to do to help yourself is to respond to other people when they post. Most of the time we don't expect answers we just need somone to listen. This is an aweful disease and some of us if not most of us don't have anywhere need the support we need. Bottom line if you read a post and you have a tiny bit of energy in ya stop by and let someone know you cared enough to say hello. I have no doubt I would not be here today if it wasn't for the support I have gotten here.
I hope I didn't offend anyone. I care about all you crazy luppies out here and wish I could fix everyone.
blessings
carol
p.s. sorry mods if you think this is out of line and delete it I get it.
furosemide,spironel,lisinopril,lortab,azithromyazin,detrol
nexium,temazepam,predisone,plaquenil,propanalol,effexor,citracal,pottasium, vitB,iron,xopenex,advair,spirivia
 
You learn to love and live
you fight and you forgive. 
you face the darkest night.
just live before you die.
 


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 4/22/2010 12:52 AM (GMT 0)   
I think you couldnt have said it better Carol!!! and I agree.

I do need to apologize, I hven't been doing too well and havent' been posting much. I will work on responding more! Thank you for the reminder carol. Love you and I am so glad to hear you are doing a little better!!

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7020
   Posted 4/21/2010 5:52 PM (GMT -7)   
My guess is maybe that most of us are outside trying to enjoy spring before it gets too hot and too sunny for us?

Dunno', but I'm still here at least twice a day.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 4/21/2010 5:57 PM (GMT -7)   
I wasn't trying to criticize anyone really. You know me I'm a ***** cat. I just wanted to say how important we are to each other. Maybe I shouldn't have said anything.

furosemide,spironel,lisinopril,lortab,azithromyazin,detrol
nexium,temazepam,predisone,plaquenil,propanalol,effexor,citracal,pottasium, vitB,iron,xopenex,advair,spirivia
 
You learn to love and live
you fight and you forgive. 
you face the darkest night.
just live before you die.
 


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 4/22/2010 1:12 AM (GMT 0)   
I agree Carol!!! We are very important to each other. I am with you, this Forum has saved me many and I mean MANY times!!! :) And I have missed hearing from some of the regulars!

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 4/21/2010 8:27 PM (GMT -7)   
Carol, you opinion means a lot to us. I'm definitely one of the people who hasn't been posting much in the last year. I'm not sure why I haven't been. Maybe I'm just so flippin' tired and fed up with lupus that I don't want to hear about it every day. That might sound trite, but it's the truth. I'm mentally burned to the ground. I want to be more active here again. I just need to be in the right head space, and I'm not in it right now. Maybe that's how some of the other regulars are feeling too?

In any case, you mean so much to me as a sister and fellow lupie. I sure care about you all and how you're doing. The fact that you even posted your thoughts about this says how much you care about everyone. You're golden!

Blessings!
Moderator of Lupus and Fibromyalgia forums

36 years old, diagnosed in 2000. SLE, Fibromyalgia, APS, Sjogrens, Raynauds, Thrombocytopenia, Vasculitis, Stroke – 2002, Bilateral sacroilitis, Clinical Depression/PTSD/Anxiety/panic disorder, Optic Neuritis. Prednisone, Imuran, Plaquenil, Coumadin, Cozaar, Zoloft, Didrocal, Seroquel


OBXgirl
New Member


Date Joined Feb 2010
Total Posts : 7
   Posted 4/22/2010 5:08 AM (GMT -7)   
Okie
I just want to thank you from a newbie who's just at the beginning of my journey.
Your posts are always helpful, caring and inspirational  -- despite all that you have going on in your life.
Thank you for stopping in and making this journey a little easier to bear. :-)

sweetladyjane
New Member


Date Joined Feb 2010
Total Posts : 12
   Posted 4/22/2010 6:20 AM (GMT -7)   
That's exactly what I was thinking, where is everyone?  I have only posted a few times but every time I have, it takes forever for any replies to my questions. I finally gave up and joined a couple of other forums. I am probably not the only one feeling this way. Sounds like you guys are more than willing to respond so I don't understand.

Diagnosed 2008 UCTD (lupus), Raynauds, Bursitis, Fibromyalgia and Asthma,  taking arthrotec, plaquinel, tramadol, adalat, symbicort and valcyclovir


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 4/22/2010 7:14 AM (GMT -7)   

Hi everyone, I wanted to thank you for responding and not yelling at me. blush Like I said I'm no one to be talking. I will try to do better myself. I think I have a fear of getting to involved again. Seems like everytime I jump back in I get sick again. I'll take my chances though. I think I'll shut up now before I get myself in trouble. I'm good at that.

I pray you all have a painless day

love carol


furosemide,spironel,lisinopril,lortab,azithromyazin,detrol
nexium,temazepam,predisone,plaquenil,propanalol,effexor,citracal,pottasium, vitB,iron,xopenex,advair,spirivia
 
You learn to love and live
you fight and you forgive. 
you face the darkest night.
just live before you die.
 


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 4/22/2010 9:17 AM (GMT -7)   
Carol, you are right and I've been one of those that haven't been around much. I think I am where Ginny is at, lupus has been so active in me lately, I just felt like I had nothing to offer except complaining about my own situation. In addition to that it's been hard for me to get my thoughts together.

I do care about my fellow lupies and wonderful friends I've made here, I will try my best to be more active because there is no telling where I would be without the support and friendship from this board.

turn Hugs and Love to you ALL! smilewinkgrin
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid and Tramadol (as needed) and magic mouthwash ( as needed for mouth sores)


alienwife
Regular Member


Date Joined Feb 2009
Total Posts : 108
   Posted 4/22/2010 5:39 PM (GMT -7)   
sorry carol :( i've been lurking . . . reading mostly, posting occasionally . . . been really tired lately & i tend to avoid any kind of interaction with people when i get this way . . . always thinking about & praying for you all!
Anne

There are only two ways to live your life.
One is as though nothing is a miracle.
The other is as though everything is a miracle.
-Albert Einstein

Dx: SLE, Sjogren's, Reynaud's, Peripheral Neuropathy


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 4/22/2010 7:08 PM (GMT -7)   
Hi Stacie and Anne,
Thanks for posting. I'm so sorry you aren't doing well. I really truly understand how you feel. You don't have to apologize to me for anything. I was just making an observation. I really started noticing it recently when I started to be able to get on here again. I know my anemia was so bad that I could barely get to the computer and typing was out of the question. I would set here and stare at the screen with a blank brain fog. shakehead . I hope you two get to feeling better soon. Anne it is really good to see you post on here! It has been awhile. Hang in there
praying for you my friends
carol
furosemide,spironel,lisinopril,lortab,azithromyazin,detrol
nexium,temazepam,predisone,plaquenil,propanalol,effexor,citracal,pottasium, vitB,iron,xopenex,advair,spirivia
 
You learn to love and live
you fight and you forgive. 
you face the darkest night.
just live before you die.
 


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 4/26/2010 8:15 AM (GMT -7)   
Carol, maybe it was just a phase most of us were going through. There's been a big transition here and that can be a good thing but it's sometimes hard to get through. I've been MIA because I'm feeling so much better and I'm out doing things rather than sitting here in bed wishing that I had a life. But that doesn't mean that I can't be here to support everyone else, and we all know that I often rear up my head to complain about something.

I'm sorry you're sick right now and hope your nurse comes out to help you. You know how much I worry about you.

Hope everyone else is doing well and enjoying this beautiful Spring day.

Pat
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

plaquenil, neurontin, synthroid, triamterene, actonel, niaspan, lunesta, cymbalta, vitamin D, Calcium, Multi Vit.


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 4/27/2010 12:17 AM (GMT -7)   
I am having some neuro issues and not feeling well since December and there are other factors I shouldn't discuss here. I am trying though and have missed some of the older members myself.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence


southerndiva
Regular Member


Date Joined Apr 2009
Total Posts : 122
   Posted 4/27/2010 6:57 AM (GMT -7)   
Hey there Carol,
I'm on kind of on the same page as Ginny and Pat.  I try to touch base on the forum periodically but life has been kind of crazy lately with my dad having open heart surgery and the weather has been absolutely gorgeous here in the south and after this horrible winter it feels good to be able to get outside and breathe in the fresh air.  I'm fortunate that the sun doesn't really affect me all that much so I've been doing what I call "flower therapy" by getting my spring beds planted and my deck in order.  Also, I agree that sometimes, even though we all have to live with this disease daily, we don't always want to be reminded about it and sometimes just need to have days that feel somewhat "normal".  But also, I understand that this website has been a godsend for me and feel very blessed to have all of you there to talk to and get advice from when I need it, and I will try to do a better job to respond to others when they have posted a problem or just want to rant. I hope you are feeling better these days.  Keep your chin up!!
Love,
Lynnette
 
DX - sle and carpal tunnel syndrome
RX - plaquenil, prednisone, lisiniprol, etolodac, darvocet when needed, hormones and daily vitamins

nolatoco
Regular Member


Date Joined Jun 2009
Total Posts : 66
   Posted 4/29/2010 2:40 PM (GMT -7)   
Hello! I'm not really one of the people that have been here for a while, but I just started posting last year. Sorry, I haven't been here. I'm still around- lurking usually. Not in as much pain or confusion as before when I was first diagnosed with UCTD. I have been preoccupied with moving!! YAY!! Finally moving back to New Orleans to be closer to my family again and get help with my 8 year old daughter since it's been kind of difficult since my diagnosis. I'm excited but nervous. I am still trying to get a job and find a place to live down there before my July moving date. Trying not to stress out since we all know that's not good for us-- but it's getting hard not to stress.

Anyway, I'm still here guys!
I'll try to get on more and post more. I just felt like I was always posting the same stuff, since my symptoms haven't really changed as of yet (KNOCK KNOCK KNOCK-- knocking on a lot of wood right now). I hope everyone is well and I'll try to get on more to check on everyone!
Diagnoses- UCTD 2009, ovarian cysts 2008, asthma 2001
Daily Meds- Plaquenil, Prednisone, Vitamin D, Wellbutrin, Glucosamine Chondroitin 


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 4/30/2010 12:40 PM (GMT -7)   

If this post did nothing else but give me a chance to here from my friends I haven't seen or heard from in awhile that works wonders for me. I swear I wasn't trying to point out anyone. Shoot I am having a hard time right now getting here. Doc put  me on  soma diazapam temazapam and 10mg vicodin. Gee I can't understand why I almost fell out of the shower head first this morning. smhair Thank Goodness for the shower chair. My fog is real bad. they changed my effexor after 6 years to cymbalta to supposedly help with fibro which they aren't sure I have. I have blood test I need done first. I'm considering using my walker to get by until I get used to this stuff. anyway I'm trying to get here especially after I started this topic. I would sound like a hypocritite if I didn't . I am just a little slow at the moment.

sending blessings to you all

carol


furosemide,spironel,lisinopril,lortab,azithromyazin,detrol
nexium,temazepam,predisone,plaquenil,propanalol,effexor,citracal,pottasium, vitB,iron,xopenex,advair,spirivia
 
"Consider it a pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance." - James 1:2&3
 


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7020
   Posted 4/30/2010 12:57 PM (GMT -7)   
Carol,

You aren't considered a hypocrite on this forum if it's illness-related!

Now if your excuse was "I was busy traveling to Madagascar shocked", we might feel differently!

Have a great day,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 4/30/2010 10:17 PM (GMT -7)   

Well considering I don't know where the mazda gascar is I probably won't be going there anytime soon.

I don't know what this ***P is but I don't like it. I just felt like I had a slight itch in my shoulder and and I rubed it slightly with my fingernail. cry It felt like someone just put a match to my skin. I don't understand it wasn't there and then now all the sudden I hurt. I don't even want to go to bed cuz I don't want to put pressure on my body. Man I got tears rolling down my cheeks. This just plain sucks! I swear I'd throw somthing if I didn't think I'd hurt myself.

hugs

carol


furosemide,spironel,lisinopril,lortab,azithromyazin,detrol
nexium,temazepam,predisone,plaquenil,propanalol,effexor,citracal,pottasium, vitB,iron,xopenex,advair,spirivia
 
"Consider it a pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance." - James 1:2&3
 


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 5/1/2010 10:38 PM (GMT -7)   
Hi Carol,
Hey girl! You know how to wake everyone up! :)

I'm sorry I haven't been around lately either. I'm in the background hiding out. I have been feeling a little blah and out of it the last few months. I will try and do better.

I miss all you ladies and gents!

Love ya, Babs
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