Good evening my friends

(((((HUGS))))) Carol, Please hang in there. This will pass. Know that we are all thinking of you.

Carol, you are truly an inspiration to all of us. Please don't give up, maybe it is time to consider an assisted living facility where someone will take care of you on your bad days. I know you like being on your own but you need more help than you are getting. If I didn't have my husband I would be in one of those places because I can't take care of myself well enough to be on my own. I really hope you get some sleep soon. Also I would like to suggest therapy to help you deal with the issues this horrid disease causes. I know it helps. I really wish I could come to where you are and help out for a few days but I am just not able to do that.

Thanks ladies, I appreciate your thoughts and prayers. I did get a little bit of sleep but still pretty out of it. I have slightly thought about assisted living homes. I know I couldn't live in a nursing home. At least assited living might not take every dime I have. The nursing home wants all I have except let me keep 50 dollars for my personel items. Which I could never live on plus I would feel very depressed with a mere 50 dollars in my pocket every month. I hurt so incredibly bad right now. I' taking 10 mil. gram vicodin and I can barely breath. I do realize I am completely complaining but I just feel like I am slipping away. When I first heard of Lupus I didn't think it was going to be like this. It isn't like people talked about it that much so it couldn't be that bad????????? in 2006 when I joined this support group I thought this would be a great place to get information and learn about the disease. I still didn't feel all that bad and symptoms were staying in check pretty well. with an occasional flare or legs made of concrete. However this past year it seems like things have just spiraled downhill quickly. Has that happened to anyone here? If anyone would like to share their experiences as of this past year or two. better worse, the same. I really would like to know. I think it might help me.

love you all

carol

Hi Okie,

I wanted to let you know that I am praying for you. I'm not always on here and I very seldom post but I do feel like I know you.  Please take care of yourself.  You are a blessing to us.

Mary Ann

Oh dear Carol,

My heart goes out to you!  What everyone else says is sooo true about you.  You are always an inspiration to all of us hear on the forum and I know I don't always respond to your posts, but I do read them and have been in awe of how you handle life and this illness.  Please know that you are in all of our prayers and we hope that you find ANY kind of relief soon.

Hugs and Angels,

Lynnette

DX - sle and carpal tunnel syndrome

RX - plaquenil, prednisone, lisiniprol, etolodac, darvocet, folic acid, hormones, daily vitamins

You people are all so kind to me. Ihave finally gotten a little sleep. That has helped some. What helps the most is knowing others are out there and regardless of how you guys feel you can still take the time to pull me out of this quick sand I've been in. I truly believe this is the first time I have felt that this is one battle I can't win. I can usually find comfort in prayer but even prayers wern't helping me this time.

I do have an update about an addition to my life! Well actually I have 2 additions. Bubba and sissy! they are about 1 lb a peice and 6 weeks old. I mentioned I had to get rid of my dog and thought kittens would be good because they aren't as hard to take care of. Well I had these ordered since the momma had just gotten pregnant. I got them two days ago. The bad news is the person that was suppose to take my dog decided not to. Since I am very particular it will take forever to find him a good home. He's a great dog smart and would be wonderful for taking to hospitals. I just won't let anyone have him. Anyway I got woke up at 3 this morning.I had 1 kitten sleeping on my forehead. 1 kitten sleeping with his nose in my ear. then my dog saw what was going on got jealous and jumped on my bed and did a belly flop on my chest. That was 4 hours ago. I have beenup every since and they are all snoozin away in my bed!

well I am going to try to get a little more sleep.

I just wanted you all to know how much you mean to me.

love you all

carol

Hi Carol, my dogs and cat and fish keep me going sometimes. My liver is turning to cirrhosis and my sun sensitivity is so bad now I get really sick whenever I have to go outside at all. I have blueberrries and blackberries as big as your thumb and can't even go out and pick them. I get a biopsy of my spine this week, I've been stuck in bed or recliner and my lungs are getting bad for some reason and I don't even smoke. Its so hard going through this pretty much alone. My son maks sure I have food and does the dishes and my laundry. I don't know if this is just me "decompensating" from liver disease or something else. I had gotten involved with my church recently, then I just got so sick this past year, and I've been mad too, sometimes I think at the church but really, I was just mad and now I'm just so sick I dont care. I know everything will be alright whatever happens, I mean it has to be, and I just turned 46, but lived a full life. I'm just too tiredand this was th outcome to my liver disease anyway. I have to face that it is what it is. I hate suffering, they gave me pain plls but they are making me stop urinating and that makes me suffer more. I have to be carefult. I wish I had something witty to say, but I'm just not together enough. You wanted to hear of people going downhill, Im sorry but I am one and this is about all I can manage.

Sending huge hugs to all of you. You're all such a blessing. I have been on very shaky ground lately. I'm not suicidal but I have not been feeling a lot of control over what I do lately. My brother  commited suicide and I could never do that to my mom. She has been through so much. It would put the final nail of the coffin. I never thought that I would feel like giving up. But yet it's been creeping into my mind. (no one ever think this it is an ulternative.) my brother was 29 and I am still angry with him 15 years later. But the pain and the pills and the tirness. I'm starting to figure out though that a lot had's to do with my health care worker. She wants to yack about her problems and talk wrestling and nascar. I do like nascar but I need cheered up and pushed to do physical therapy. It's supposed to be about me and it is about her boyfriend problems. Being about me sounds selfish but it has to me. This is life and quality of life. I just went down hill with this new lady.

Marji, I'm so sorry you are going through so much. Is the cirrhosis from the auto immune? I know my rhumy said bilateral cirrhosis. we descussed this a long time ago.

my prayers are with you. Like they say there is strength in numbers.

God bless

carol

Hi! Carol,

When I saw an Okie post, I was truly relieved and said to myself.. "Okie! ". My faith in God helps, call Him what you will. I will say a prayer for you, and Marj, too and I hope you have a moment in your day when you forget how ill you are, even for just a minute. I have wrens nesting in a hanging house near my porch. Whenever I hear their wren song, I pause to listen and remind myself to thank God for my blessings, and pray to have the strength to get through today. We can never go back to yesterday, and I get too overwhelmed by today to worry about tomorrow, so God will have to and He does. And it is perfectly ok to be mad at your brother, and I am so sorry you lost him. I have been sick enough on two occasions in the past year when I could truly have willingly died. And that's not suicidal. I know what the feeling is to have lost someone you loved so much, and to think about the what might have beens.... hang on to some of your good memories. I am cleaning up my classroom for the final time next week, and have small construction paper elephants all over the place. A dear coworker made them for me when I first took the job, and when I felt so overwhelmed. She heard me comment several times... "Well, how would you eat an elephant?...... One bite at a time." And eating elephant casserole?   Without choking. Many of my days start with a bite, just get up on my feet to the bathroom, then walk to the coffee pot. Then another, take pills, wait for effect, get to the shower without falling, and my day gets on. Wishing you the best of feeling better,

suetoo

ps. your posts here are a blessing to me