[January]

((((( Everyone )))))

I'd love to list out all your names, but as sure as I do, I'll leave someone out so I won't take the chance.

Cake, I'm so sorry for the loss of your friend. I hope you know we love you an that we join you in your grief.

Sabby, I'm so glad you're feeling better. Who knew Dunkin Donuts had sandwiches! You learn something new every day if you just pay attention!

I'm not bouncing back from the extractions as quickly as I thought I would. Then I got to thinking about it, and I'm not as young as I used to be be either. I changed my appointment for the next extractions from this Monday to the following week. My body, my fibro and I need a little time.

Hugs to all!

[cakeladie]

Bubbles fight it I am fighting it and so can you.

[lizardlady]

Y'all will love this. Yesterday my boss, who knows nothing about fibro, said I must be doing okay because in the two years she's been with the agency she's never seen me be sick or "crash and burn." I looked her in the eye and said "That's because I'm really good at covering it up." Dumb broad! Y'all have heard me whine lately. I'm having a really rough go of it right now and she thinks I'm "fine"! :

[cakeladie]

Liz I worked with doctors who all knew I had lupus fibro RA etc. I had worked there for several years before I was dx. Has the years went by depending on my treatment I would miss work or if the kids got sick.

But they clearly saw me going down hill or you would have thought. My boss did. I went from walking to having to use a cane to a crutch. I even had one doctor think it was funny to hide my crutch.

I worked under ground so I had to walk up a flight of stairs cross a street to the parking lot. One day she left and she had hidden my crutch I could not get to my truck to get home. My boss was pissed. Someone went and got my truck for me.

That is the year I crashed and burned from lupus. I went from working one minute to having uncontrollable seizures. When my boss had to tell everyone I would be off for a while they were shocked. They claim now mind you these are doctors they never saw it coming. My boss said she shook her head and went into her office and closed her door. She also locked it so they would not pester her.

Here is the thing that I worry about. You can hide it real good and you can push yourself but then at some point you can crash and it's not pretty. I have been pushing myself swimming and today I could hardly take a shower. I took my shower and then had to lay down.

Please everyone take care and know your limits. And those who live alone keep in touch with someone a simple text that you are ok or no you need help.

Liz you are a very strong women. But you are human you need to take care of yourself and rest. Don't be afraid to ask for help or let someone know you are hurting. Don't make the mistakes I made.

Ok I am getting off my soap box now

[lizardlady]

Cake, the idea of that kind of crash and burn terrifies me. Idiot boss doesn't understand why I like to bank a ton of paid time off. My fear is that I will crash and burn and not have time available to take care of myself.

I'm doing the best I can to care for myself right now. I'm limiting how much I do. I have to go to work. I have to care for the horse.I left work a half hour early today because I just couldn't be there any longer. I'm not medicating the horse through the night any more. He gets his last dose around 9 PM, then I head to bed.

I'm not sure what I would do lately if it weren't for all you wonderful folks here. It's so helpful to have a place where I don't have to hide what's going on AND have people who understand what I'm talking about.

[cakeladie]

I know Liz and if it was not for working for a university and banking my vacation time and sick time we would have lost our home when I crashed. I had banked almost 480 hours of vacation time and more then that in sick time. I was lucky that we had our own disability program. So I was one of the lucky ones when it comes to stuff like that. Since I crashed the university has changed a lot of their policy's but I am covered.

My boss is single and did not have family close by so when she got sick or had to have out patient surgery it was me who took her picked her up and checked up on her. I still check I up on her.

But she also saved her vacation time and sick time in case she ever got really sick. When I crashed lord it scared my work because I had worked with the same people for almost 20 years it sacred my family and my husband. He looked at me and told me he thought he was going to have to tell my kids I was gone. I did a year of chemo and tried to go back to work 3 times that year. Plus my daughter was on a competition cheer team and that year their nationals was in Florida. I live in California. I thought I would die but I went and did what I had to do.

Just take care and rest when you can and please keep in touch.

Sending you healing vibes and hugs

[Kiya]

Thinking of you all. I don't know what head space I'm in, so I just keep walking and pushing endurance. It's all I can think of to do rather than be unsafe.
You are all brave, strong ladies (who I wish got more care than you do).
Hugs

[LettinG0]

((((((Everyone)))))))

thinking of you all.

[January]

I hurt all over, but my hip and leg right on down to my instep are hurting extra badly. I have errands I must do today. There is no one else to do them, otherwise I would try to stay still. It doesn't hurt so much if I stay still. I will take some cheese now with my wine.

I've read your stories and I am amazed at your strength, bravery and tenacity. You have my deepest friendship and admiration.

[cakeladie]

Hi guys I wanted to do a quick checkin and let you guys know that hubby and I are heading to Yosemite tomorrow for the weekend. We will be back on Sunday. I really do not want to go. I have not been sleeping and the pain has been real bad but hubby has been looking forward to this so I will go and try and have fun.

Take care all and rest when you can. I will check in on Sunday.reception is spotty up there

Take care everyone

Hugs to all

[~Christina]

Cake ! I hope you enjoy your trip

[January]

I hope you have a wonderful time!

[Kiya]

Hugs Cake!!

(And everyone!)

[Travelinglady]

Is it just me or does stress really increase your pain? I really had a bad night and lots of things are going on in my life right now.

Hope you all have some pain-free days...

[lizardlady]

Originally Posted by Travelinglady

Is it just me or does stress really increase your pain? I really had a bad night and lots of things are going on in my life right now.

Hope you all have some pain-free days...

Trav, it's not just you hon. Stress increases pain.

[lizardlady]

I'm so sick of hearing myself whine, yet I need to.

I'm feeling completely overwhelmed today. The pain isn't that bad, it's that I'm tired of hurting all day every day. On second thought, maybe it is that bad. It woke me up during the night last night.

It took me hard work to learn to focus on the positives in life and on what I accomplished instead of what I should have gotten done. I'm slipping into only seeing what isn't getting down instead of what I am accomplishing.

I told myself I get to take today to rest. I know my body needs it. I'm right on the edge of crashing and burning. If I don't rest my body will see to that I'm forced to rest. Still I sit here looking at everything that's not getting done and feeling crappy about it.

I said before that I haven't been posting much because I didn't think I could be supportive. This morning I thought I was ready to start replying to people. I decided that I wasn't ready when I found myself thinking "oh get over yourself!"

Gawd almighty I want a break. A break from having to medicate the horse. A break from dealing with the dog who is misbehaving because he doesn't think he is getting his share of my attention. I wish the brownies would come in and clean this pig pen of a house. A break from hurting. Heck, a break from living inside my own head! I'm not very good company right now.

[cakeladie]

Well we are back and it was hot which is not good for people with lupus but our hotel had fans and some of the restaurants had air which was nice.

The day we arrived 2 kids died. They were sleeping in their tent and at 4:15 am an old oak tree lost a limb and crashed down on their tent. I read a report that we have lost 12 million trees in California due to the drought. And if that was not bad enough they found 2 dead squirrels they died from the plaque. So starting this Monday they closed 300 camp sites. Now people make their reservations some times over a year in advance. This month is the busiest for Yosemite. I don't know what they are going to do.

We got up early and made it home by before 9 am but my son had the house a mess. He has autism and mild retardation and some OCD issues but give me a break. We have left him alone before and it has never been this bad. He's 25 years old. Last time he said I did not leave him a list so he forgot. This time I left him a detailed list 2 of them and called. And came home to every towel in the house used the bathroom a disaster just the whole place. Then I noticed even some of my clean clothes where in the dirty pile. Clothes of his that were still folded in the dirty pile clothes with tags still on them I blew a gasket.

I scrubbed the bathroom and I have been doing laundry non stop plus I had to send my husbands time sheet via the computer.

Yosemite for the most part was fun. A lot of people a lot of rude people. People who do not respect the beauty of the place. They left dirty diapers every where. Then my husband rented a bike because I was going to fast on my powerchair then he went off reading ok now my power chair can only do so much. I got stuck twice but two very nice guys helped me.

Ok I need to get back to laundry and fixing what messes mike made. He has a doctor appointment tomorrow to talk about his OCD issues.

[lizardlady]

Welcome back Cake. What say we rent a nice air conditioned room on the beach and hide out for about a week? You can soak up the A/C. I'll go lay on the beach and soak up the heat. The maids can take care of cleaning the room and we'll order room service for meals.

[cakeladie]

Sounds good to me

[~Christina]

Well since I seldom sleep and I clean all the freaking time due to my bipolar zooming racing OCD mind. I am so tired of cleaning my stuff. I will come clean for you guys!

[January]

Jan gets in line behind Liz and Cakeladie so Christina will come and clean her apartment, too.

[LettinG0]

Yes.....I'm in the house cleaning line also......

[~Christina]

Would be my pleasure !!!

[cakeladie]

If I could get to a bridge I would jump off of it. It has been one hell of a day

[~Christina]

Ahhh Cake I am sorry today has been awful

Can you just go to bed early and hopefully tomorrow will be an improvement?