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Posted 7/22/2007 5:42 PM (GMT 0)
My joints are so hot and swollen and I'm so tired that I've broken down this week and increased my prednisone. It reminded me of something that I've been meaning to share for a while. My doc told me that fish oil decreases inflammation and she's been having me take four pills a day for some time. I also remembered something my dad's neurologist told him when his memory started failing, and that is that there is research that indicates that vitamin E can help with memory and can delay dementia and alzheimers. I have no idea if it will help brain fog, but I'm taking it just in case.

I'm staying in bed today to rest and to stay out of the heat. I hope you all are having a good weekend.

Pat
Posted 7/22/2007 6:53 PM (GMT 0)
Patty
I am sorry you are not feeling well and had to increase your prednisone. Hope you rest up and feel better. Take care. God Bless,
Judy
Posted 7/22/2007 7:04 PM (GMT 0)
Hi Patty, I'm sorry you aren't doing well. I imagine there is some stress involved causing it with anniversaries and such. All though I'm really glad you have wonderful memories of your folks. I know my brother has terrible joint pain and he takes fish oil capsules every day. I don't know if it helps but he takes it. I was watching somthing on t.v. earlier that said people that live in countries that use alot of curry in their food have a much smaller precentage of alzheimers. I don't beleive it helps after the fact but as a proventative measure. Might help to start shaking a little curry in our food huh? Well sweetie you take care and get some rest.
I pray it won't last long
love ya
carol
Posted 7/22/2007 11:51 PM (GMT 0)
Pat, I feel so bad that you are flaring - your joint pain sounds really bad. I'm glad you mentioned the fish oil. I've also read some good things about fish oil and relief from inflammation. I had forgotten that I tried it not long after I got sick, but it seemed to upset my stomach so I quit taking it. I may have to give it a try again. I really hope that you get plenty of rest and that the increased prednisone will help bring you out of the flare. Hang in there. Maybe both of our flares will be short lived. Take good care of yourself. Love and hugs
Posted 7/23/2007 2:23 AM (GMT 0)
Patty,

I'm sorry... gosh, looks like these flares are hitting everyone left and right. I hope you can get out of it soon. Take care of yourself and take it extra easy. Keeping you in my thoughts.

Take Care
Posted 7/23/2007 2:27 AM (GMT 0)
Hi Patty--
Sometimes I wonder if this weather is affecting everyone. I'm sorry you are flaring now and I hope you get the right drugs to bring you out of it soon and that you get better soon. I hope you can get to rest and put your feet up and veg out. Just remember what Dan Quayle said, "It's a waste not to have a mind." I'm sure you're not that bad off! And he didn't even have lupus! Hoping you feel better soon!
Posted 7/23/2007 8:46 AM (GMT 0)
Marji, Carol, Hippi, Des and Judy,

Thanks for your compassion. Why is it that we have to go to other women for that, and usually women who understand being chronically sick. It beats me.

I've wondered myself if the heat is causing so many of us to flare. In my case I have trouble functioning in the heat. I see my rheumy this month and am going to talk to her about increasing my cellcept or adding another drug like methotrexate or imuran. I increased my prednisone again today and don't feel any better so I may increase it some more tomorrow.

My 40th high school reunion is in January in Ft. Lauderdale and it's the biggest one we've ever had and I just don't see how I can go. By the time I pack and get ready for the trip and then travel to Florida, I'll be sure to flare. The hotel is on the beach and even though it's in January, there's a lot of sun in Florida in January. I was there about three years ago in Jan and everyone is outside at the pool or the beach. I really think I'm going to be kind to myself and miss this one. I'm one of the regulars and have been to many of the others we've had, but the idea of this just gets me down. I don't know how many more of these we'll have and since the last one we lost two guys from my class of 18 and one from the class after ours. Maybe my mood will change, but right not I feel so bad and hurt so bad and can't find anything that cuts this pain. Wow, I'm having a major pity party. If I can get some sleep tonight I'll feel better in the morning. It's just been a bad day.

What I really meant to say is thank you all for being so kind to me. I treasure each and every one of you. And to those of you who are also flaring, like Hippi and Carol, I'm sending you warm wishes for better days ahead. Thanks for listening to my rant.

Love,

Pat
Posted 7/23/2007 3:09 PM (GMT 0)
Pat, I wish you were getting some relief - I haven't had much either. The thing about your high school reunion made me sad. It made me sad for all of us how this illness has prfoundly changed our lives. I do think that most of us try so hard to be positive and really appreciate the little things, but I think sometimes we all have to grieve for the changes in our lives. I know we appreciate many things that healthy people take for granted like having the energy to get up and just take a shower or maybe having the energy to do some laundry or to get some groceries. I actually get excited on the days I feel like I can do all those "little things". It's just sad because for healthy people, a trip to the Florida beaches in January would be a dream, but for us lupies it could cause all kinds of trouble, not to mention all of the packing and travel, like you mentioned Pat. I'm not saying this to bring anyone down, it's just a sad part of this illness that we all have to deal with. I'm just glad we can be there for each other when these things come up because I don't think a lot of other people really fully get it. When people hear all the things I have to take into consideration before doing something or going somewhere, I think they sometimes think I am being over dramatic. Who knows, there's always the chance that you'll be feeling good again before the reunion and might feel like you could handle going. I know the decision would be hard though because you have no way of knowing how the trip or the climate will affect you. I'm glad you are going to talk to your rheumy about helping you through this flare and maybe adjusting meds so that you will hopefully not flare as often. It seems like decreasing the cellcept has made you more vulnerable to flares. Okay, I'm done rambling - I hope I made some sort of sense. Please take good care of yourself and I'm really hoping the increased prednisone will kick in and that your rheumy will be able to help. Love and hugs
Posted 7/23/2007 4:19 PM (GMT 0)
I understand about lupus throwing a wrench into reunion plans. My 30th was last year and on some levels I really wanted to go...mine was in Cocoa FL, about 500 miles away, in July! I knew that by the time I'd driven that far, I'd be too exhausted to enjoy anything. Add my exasperation at the 40 lbs I've gained in the last 3 yrs (when I'd had my high school weight up till then)...plus I'm an introvert and it takes energy to talk w/people you haven't seen or kept up with for so long....I just couldn't see any way it would be good for me. But, you still have 6 months! Hopefully being good to yourself and addressing the problems w/your dr now will make things easier by then. I hope you feel better soon,
Posted 7/24/2007 4:10 AM (GMT 0)
Thanks again Hippi and Lynnwood. The reunion is important to me, but more important is figuring out how to get better. I'm so exhausted from the pain. Today I broke down and took two lortabs at once and it still didn't get rid of the pain. An hour long bath in a tub full of hot bubbles helped relax me. I'll let you know what my rheumy says on Thursday. I hope she'll prescribe another med. Thanks for your messages.

You guys always pick me up and I appreciate all of you!

Love,

Pat
Posted 7/24/2007 5:58 PM (GMT 0)

((((((((Pat)))))))), Hi sweetie, I'm sorry you aren't getting any releif. I hope your rheumy can get you somthing diffrent. If 2 lortab didn't help you must be in quite alot of pain. If the bath helped relax maybe your doctor can give you xanax or somthing. Somtimes that with a little extra pred. helps when my muscles are really aching. I'm so sorry about your reunion but like you said that is not the most important thing right now. Getting well has to be the priority.

Let us know how the rhuemy appt goes and try to get some rest. I noticed you have been up alot during the night. that can't be helping anything.

lots of love and prayers

carol

Posted 7/24/2007 7:46 PM (GMT 0)
Thanks Carol. The added prednisone has helped and I feel better today. I'm having another headache but thankfully it's mild. I'm anxious to get to the doctor.
Posted 7/24/2007 7:59 PM (GMT 0)
(((Patty)))... I am glad that the pred gave you some relief and I hope the doctor can do something to get you better quick. You are in my thoughts.
Posted 7/25/2007 11:49 AM (GMT 0)

Hi Pat - You poor woman - I read your post about the pity party and hey, I've been to a few of my own lately...lol

I too have a reunion of sorts this weekend and I've been super apprehensive about it.  I know part of my anxiety comes from the fact that I will be staying at my mothers for a few days too but I'm absolutely dreading the standing for hours and the walking because my legs haven't been cooperating lately.  I told my husband that he is going to have to get a wagon to pull me around...lol. 

I've been going to this party for years and they are getting harder and harder on me.  Last year, I just couldn't partake in the Saturday afternoon events and my husband (being the considerate soul that he is) said that I wasn't going to make HIM miss anything this year - thanks - thanks for the support... grrr...  I will try to do as much as I can but I am not going to go overboard... As for your party - wait a bit to make a decision - who knows - you might be feeling great by then (we can always be hopeful right?).  

Take it easy and get some rest!!!

Sands... 

Posted 7/26/2007 3:10 PM (GMT 0)
Hi Patty just checking on ya. I hope you are continuing to feel better. Let us know how it's going. Good luck with the Rheumy appt today!
love ya gal
carol
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