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Posted 1/11/2008 5:41 AM (GMT 0)
I just wanted to check in real quick and say hi. I'm feeling better as far as my lungs go. As for the rest of me I'm afraid all the time off the plaquenil has taken it's toll. I'm starting all over and I have to stay on 20mg. of steroids. I have back pain shoulder pain, neck and knee pain. I also have to take  z pack of antibiotics once a month every month for as long as the doctor tells me to. They finally got the people figured out that will be coming to take care of me. I guess we get together in a couple of days to figure out just how much care I will need for my showers and hair and stuff and than another person to care for the laundry and house cleaning. It took a little adjusting to get used to the thought that it will be a more of less permanent thing. I am greatful but a little depressed by it. They said it wouldtake about 2 weeks for the approval. but hey if I get better I can always say I don't neeed the help any more right? I'm just so used to taking care of myself it's kind of embarassing to know others will be tending to my needs. But I guess if it will keep me functioning a little bitter and longer than I need to do it.

anyway I really don't have a lot of energy to type this as I am still on the road to recovery.

Hopfuly I will be able to catch up soon on what is going on with everyone.

love and prayers

carol

Posted 1/11/2008 2:03 PM (GMT 0)
((((Carol))))  It's good to hear from you.  I know you find home health care depressing.  Can you look at it as being a pampered rich girl?  I'm paying someone to give me a pedicure today and if I could afford to get my hair colored once a month I'd do that too!  Try to relax girlfriend and accept this as a good thing.  And yeah, you may be well enough to stop it some day, but enjoy it while you can. Paris-Okie!  Do you still have your dog?  I bet he'd look great in a tux tongue   I love you Sis.
Posted 1/11/2008 2:42 PM (GMT 0)
(((((((((Carol)))))))))) *sigh* Oh dear! You are really in a pickle sis. It IS a good thing they are arranging your help . . . I hope you have some friends or relatives helping until they get this service going for you. Sounds like you are really off your feet. So glad you'll be able to get help so your can rest and have someone in and out on occasion to make sure you are ok. I hope you'll be up to posting again soon. I know most of you use a desktop computer . . . . AKKKK!! I can't sit very long at a computer anymore . . . I sit in my recliner with a laptop. I've been using one for 3 years now and I love it!! Thanks for the update sis!! Some hot tea for you!! Blessings!!
Posted 1/11/2008 4:14 PM (GMT 0)
Carol, it's good to hear from you, but I'm sorry to hear that you are down. I was worried when you had said they weren't giving you plaquenil in the hospital because I know it had been helping you. Hopefully it won't take long for it to get back in your system since you weren't off of it for too long. I'm glad they are getting the home health situation figured out, but I do understand how it could make you feel down. I like Butterflake's idea about it - now you have someone to help with all those things that wear you out and it might help give you energy to enjoy things a little more. Please take good care of yourself. Love, hippi
Posted 1/11/2008 5:40 PM (GMT 0)
Hi Carol:

(((((hugs))))) to you, I'm so sorry that they took your plaq away. Don't you just hate when they do something that you know is going to cause you problems. It's great to see you posting again. I know that you were/are very sick. I wish I lived closer so that I could be you some home made chicken noodle soup. I know Hippi has your number, if it would be alright with you would you let Hippi know it would be alright to give it to me. I can't do a lot but I can call you and check on you.

You keep getting better and post only when you feel up to it. We love you Carol and care a lot about you. Don't stress over the extra help just look at it as a close friend helping you out. Imagine it's me cleaning for you and for a good laugh as I'm cleaning I wearing a clown suit to entertain you. LOL All joking aside, you need the help right now and it will go just fine Carol. These people work with sick ppl like us a lot and they are very caring and understanding. It's gonna go just fine. Please take care and get plenty of rest and take it easy.

Love ya,
Barb
Posted 1/12/2008 5:24 AM (GMT 0)
Carol, I know it's so hard to give up and let somebody come in and help because it feels like giving up yet another part of your life. Try to look at it as part of your treatment plan. Your body needs to rest in order to heal. Please take care or yourself. Love ya, Judy
Posted 1/12/2008 6:07 AM (GMT 0)
Carol,

When I read your post, my first thought was I wanted to come over and give you hugs. This last round has really taken a toll on your body. Don't let it get your spirit. You are the same Okie to us that you always have been.

I agree with Butterflake; look at it as your time to be a pampered, rich girl! You've needed the help for so long, I'm glad you are finally getting it. I can understand your feeling of losing some independence. Maybe looking at it as part of getting back on your feet just like taking your medications will help.

Take care of yourself first and learn to say "no" when necessary to those folks who think they know what is best for you. YOU know what's best for you, so listen to your own inner voice.I'll be thinking of you and keeping you in my prayers.

love you friend,
xoxo emmie
Posted 1/12/2008 4:24 PM (GMT 0)

Hi Donna, Rosie,Judy, Hippi, Barb,Emmie, thanks for thinking of me and responding. I love ya all.

Donna, as far as Taco is concerned I don't think he's be crazy about a tux but I did get him a pediure the other day LOL. He also would love it if somone would buy him food other than what tthe cheapest stuff is I can find. But hey if I'm eating balogni he sure ain't getting steaks LOL

Rosie yes I would love to have a lap top but first I'd have to find somone with money that would be willing to buy me one. Oh my favorite tea is CHAI, so anytime you got a pot of that on I'm up for it. I do know what you mean about trying to set at a computer it get gets rough real quick. Plus my lungs have gotten bigger than my ribs and when I set up straight my lungs push against the rib and it hurts and makes breathing more difficult. I am thankful for the coputer I have though if it wern't for that I would never have met you guys and you are a God Send to me.

Hippi, you are such a sweetie, If anyone wants my # (barb asked for it) that's fine with me. I'd love to hear how everyone is doing and it helps keep me from thinking about my problems. I know we all have them. This stupid plaq. is a real problem. Do you remember the wringer washers? I feel like my body got ran through one of those and all twisted up. The nurse and the home care worker are coming out Monday to help me make out a program of what I need so if you think of anything that I can put on a list let me know. I know they will clean and stuff and put my meds together. I'm having a really hard time with my meds. I have a box but for some reason I'm not using it right. I've really been praying because this time around really knocked me down and I can't seem to get back up. I hope you are getting some rest and things are getting better for you. just try to take it easy as possible. love ya

Actually Barb, I could imagine us taking turns taking care of each other but since I only make micromeals you'd have to do the chicken soup. I did read somthing aboutpossibly starting looking for a bone marrow donor. I'd give you mine but trust me you wouldn't want it. Why is this disease so unrelenting? I just want it to STOP. Pat tried to get me an appt with her doctor but they don't take my insurance. I do have an option of going to Vance AF base but that's only if I have a life or death situtaion of they need to do major surgery. Champva is kind of weird compared to Champus with I think you have. Keep that clown suit handy You never know when it might be needed. of course you can have my phone #. I only have a cell phone so nights and weekends are the best unless you have cingular. (AT and T) thank I can talk all the time lol. I hope yo are doing a little better and my prayers continue to be with you.

Thank you Judy, I am trying to have a possitive attitude but I feeel like I need to clean my house before they see it and it scares them away lol. I washed 3/4 of my dishes last night before I gave up. But it will all work out I'm just going to beleive that! love ya.

Emmie, (hugs), thank you hun, you diffinently nailed it this time really took a peice of my soul with it. I really don't feel much like the old OKIE. I look in the mirror and she's just not there. I'm just praying for a break and the strength to feel better even if it's only a few days. You know I read at the bottom of the posts about all of the problems that everyone here has and it blows me away that people continue to support me when you all have some many problems you fight on a daily basis. You are all quite amazing people. Well My back is starting to cry again so I better go. Please take care and know you are in my thoughts and prayers

love

carol

Posted 1/13/2008 2:21 AM (GMT 0)

Carol,

I'm just getting on tonight and saw you were in the hospital and now home and sick.  I am soooooo sorry I wasn't here for you earlier.  Please know that you are in my thoughts and prayers and I hope for a speedy recovery.  Did you ever get a firm diagnosis of PBC or not?  I hope it's NOT.  I am sooooo happy yeah to hear that you are finally getting help to come in and do some of the tasks that have been too hard for you to do (like cleaning and grocery shopping).  You deserve to be pampered and taken care of.

Sending you lots of hugs and prayers that you are feeling much better.  I only live one state away and very much wish I could come and take care of you myself.

Diane

Posted 1/13/2008 4:30 AM (GMT 0)

Hi Diane, how sweet, you have so much going on in your own life and to want to help me what a wonderful offer. Forgive me but are you in kansas? or texas?, new mexico or arizona. my brain is fried. I don't expect you to come take care of me but you are more than welcome to come visit anytime you want. I have 3 bedrooms two baths and spoiled dog. we can always watch movies and check out my little tiny town lol. It's hard to be alone sometimes. I havn't heard from you in so long how are you doing? If you can live on pizza and micro meals we got it made lol. I'm sorry I havn't been much of a friend lately. I feeel so selfish. send me an email anytime. tell me how it's going. My brain gets frieds and I forget alot. Not sure if it 's meds fog or lupus brain. I wish we could all get together sometime and help and support each other. gets lots of pictures. I've never felt so close to anyone as the people God has put in my life. I'm feeling a little wound up tonight maybe I can get some catching up done on some posts. At least let people know I care.

 don't stay a strenger

love ya

carol

Posted 1/13/2008 6:32 AM (GMT 0)
Hi Okie,

I've got 3 ideas for you:

1. Don't worry about getting on here. We know you love us. We love you, too and that's why we don't want you using your energy except on getting better.

2. Don't worry about how your house looks. When "they" come to evaluate what kind of help you need right now, it's important that they see things (ad YOU) as they really are.

3. See if you can get some physical and occupational therapy. The therapists can also come to your place. It's surprising what they can help you get back and figure out easier ways to do things.

I'll keep this goofy brain of mine trying to think up more stuff for ya.

xoxo emmie
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