Stay positive Janice. I too feel run down at times, but, I can't allow myself to give in to this illness. A sense of comfort is knowing and watching those whom have this dx for a longer period of time and gathering strength and coping skills from them, this is why I cherish this online community.
My new favorite star is Toni Braxton, she has lupus and when I see her on tv on certain days it is clear she was flaring during taping (moon face, loss of hair) then other tapings she looks much better. Eventhough she is an on air personality, her open struggle and confidence to be filmed during flares and other times gives me confidence to look forward to another day.
You are in my parries.
janice said:
I am not looking forward to the holidays. I have never managed to get through them without sadness--even when we (as a family) decided not to celebrate in an effort to avoid the sad feelings.
I am super stressed because there is what appears to be an impossible to fix problem between a loved one and myself. I feel so alone.
But maybe that is part of the way---part of the Way, you know. Maybe I have to give up everything--all attachments. Except to God and even my understanding of God may be challenged. idk.
maybe things will look different later on. I just feel very sad tonight because I can't make things better...and i have been really sick today. Going to the doc tomor--to the endochronologist. maybe he can help.
Stay positive Janice. I too feel run down at times, but, I can't allow myself to give in to this illness. A sense of comfort is knowing and watching those whom have this dx for a longer period of time and gathering strength and coping skills from them, this is why I cherish this online community.
My new favorite star is Toni Braxton, she has lupus and when I see her on tv on certain days it is clear she was flaring during taping (moon face, loss of hair) then other tapings she looks much better. Eventhough she is an on air personality, her open struggle and confidence to be filmed during flares and other times gives me confidence to look forward to another day.
You are in my parries.
janice said:
I am not looking forward to the holidays. I have never managed to get through them without sadness--even when we (as a family) decided not to celebrate in an effort to avoid the sad feelings.
I am super stressed because there is what appears to be an impossible to fix problem between a loved one and myself. I feel so alone.
But maybe that is part of the way---part of the Way, you know. Maybe I have to give up everything--all attachments. Except to God and even my understanding of God may be challenged. idk.
maybe things will look different later on. I just feel very sad tonight because I can't make things better...and i have been really sick today. Going to the doc tomor--to the endochronologist. maybe he can help.
K.I.S.S. Keep It Simple Sweetie is my motto for this holiday season. I am only going to do what I can do. One of the things I can do is make a memory-list of all the times I felt swept up in the magic of Christmas...
Once when I was about 10, my mom and grandmother owned an upholstery shop. My mom was making these huge snake pillows 9very friendly snakes) they were easily the length of the sofa and as round as two pillows put together. She told us that she was making them for a customer. I was so jealous! I wanted pillows like that. They were blue and soft--made with leftover velour i think. She never let on that they were for us.
When I saw them under the tree on Christmas morning I was as thrilled as I could be. It made me so happy to be the kid i was (mistakenly) jealous of.
ok--we always got stockings and they were clean pairs of my uncle's knee socks. They were stuffed with hard candy (the ribbons kind) and an orange, an apple, and a real coconut--or and nuts in shells too. We loved getting the coconuts---that was the best part
Rachel, you have been on my mind so much...just want to let you know that i am prqaying for you. I am going to pray the Divine Mercy Chaplet and meditate on the sorrowful mysteries every day from 3-4 and i will remember you especially now that the holidays are coming....
Seek consolation in prayer, God will meet you there and take every sorrow as seeds for tomorrow to bring to fruition His glory through you;
BEAUTIFULLY SAID JANICE, U ARE A WONDERFUL FRIEND, THAT I AM SO THANKFUL FOR, AS I AM SURE, MANY OTHERS ARE ALSO!!
AND RACHEL, I AM WITH YOU ON THAT ONE, SO MUCH & MANY LOST LOVED ONES, "POPS" INTO MY HEAD TOO AROUND THE HOLIDAYS......WE R TOO YOUNG TO BE W/O, BUT WE ARE STRONGER & BETTER PEOPLE BECAUSE OF WHAT WE HAVE FACED..& AS CLICHE' AS IT SOUNDS WE HAVE THE AWESOMEST ANGELS EVER!!! ;)...LUV U ! SUZIE XO ;)
janice said:
Rachel, you have been on my mind so much...just want to let you know that i am prqaying for you. I am going to pray the Divine Mercy Chaplet and meditate on the sorrowful mysteries every day from 3-4 and i will remember you especially now that the holidays are coming....
Seek consolation in prayer, God will meet you there and take every sorrow as seeds for tomorrow to bring to fruition His glory through you;
It is not even the middle of December and i am exausted!! I LOVE Christmas, and I am trying to do all the usual christmas stuff, cooking food for our work party, helping with the kids daycare christmas party, helping out with the food bank, shopping, decorating, and on Sunday my girfriends and i did our annual cookie baking marathon. It is what is sounds like we literally bake until we can't bake anymore for a whole day and evening.
So now i am so tired and my joints hurt so bad I just want to stay in bed for a couple of days- but I have to go to work and my inlaws are visiting this weekend so i will have to clean, do laundry, ect ect.
I guess I just don't know how to slow down and I feel like it is not fair that I have to pay physically for having a little fun. I am afraid that I will go into a big flare if i try to keep this up- but life is not worth living if you cannot do the things you love.
We r all in the same or at least very similar circumastances, that is kinda why I even made the discussion, so that we had a place to rant as needed & be totally understood with feeling a bit or alot even overwhelmed!!! Hang In & as hard as it is, TRY to enjoy it all, it flies by waaay tooo fast!!!! Merry Christmas!!! xo Suzie :0)
MegLupusNewbie said:
Hi Everyone,
It is not even the middle of December and i am exausted!! I LOVE Christmas, and I am trying to do all the usual christmas stuff, cooking food for our work party, helping with the kids daycare christmas party, helping out with the food bank, shopping, decorating, and on Sunday my girfriends and i did our annual cookie baking marathon. It is what is sounds like we literally bake until we can't bake anymore for a whole day and evening.
So now i am so tired and my joints hurt so bad I just want to stay in bed for a couple of days- but I have to go to work and my inlaws are visiting this weekend so i will have to clean, do laundry, ect ect.
I guess I just don't know how to slow down and I feel like it is not fair that I have to pay physically for having a little fun. I am afraid that I will go into a big flare if i try to keep this up- but life is not worth living if you cannot do the things you love.
Just be strong, and know that we are all here for you if you want to rant anytime, thats what the lupus family is all about. Do what you can, ask the Lord for strength and the rest wil be easy. Most importantly as Suzie D. said, just enjoy it, because it does go Soooo fast. Remember you r a warrior, but even warriors need to rest to keep fighting. Take of yourself sweetie.May God bless you and your family and HAPPY HOLIDAYS!!!!
I shop online for most of my gifts. Now the problem lies in picking up the merchandise from the store... Another battle. I have put off shopping for decorations until the second week of December (this is when I feel better) and I will have to buy the items then. Working on stock piling decorations so I can work on them in the home next year.
Hi MegLupusNewbie, Don't over do it !!! Take a BREAAK... I know it feels good to do somethings that you use to do , But if you're not getting rest during this moment YOU WILL CAUSE A SERIOUS FLARE TO COME ... This happened to me back in the summer months , where i over did it for 2weeks nonestop the thrid week came and i was feeling every bit of it in every joint and( everywhere that hadn't had an flare B4 then... smile) - not saying you can't enjoy the moment but try to take / make it simple some days !!!! ) being there counts also even if you don't really help do anything ... Beverly L.
MegLupusNewbie said:
Hi Everyone,
It is not even the middle of December and i am exausted!! I LOVE Christmas, and I am trying to do all the usual christmas stuff, cooking food for our work party, helping with the kids daycare christmas party, helping out with the food bank, shopping, decorating, and on Sunday my girfriends and i did our annual cookie baking marathon. It is what is sounds like we literally bake until we can't bake anymore for a whole day and evening.
So now i am so tired and my joints hurt so bad I just want to stay in bed for a couple of days- but I have to go to work and my inlaws are visiting this weekend so i will have to clean, do laundry, ect ect.
I guess I just don't know how to slow down and I feel like it is not fair that I have to pay physically for having a little fun. I am afraid that I will go into a big flare if i try to keep this up- but life is not worth living if you cannot do the things you love.
I was diagnosed with Lupus a few days before Christmas in 2007. Since then, the holidays just haven't been the same. So around this time, I'm usually super depressed and wondering what will become of my life in the future. But I try really hard to put the negative feelings aside because I have a small daughter, and this time of year means so much to her.
It's hard trying to explain to a 4 year old why you I sleep so much, or why I'm always hurting, or why I have to take so much medicine. But I try to cope as best as I can.
I too wrestle with the complications of medicine, lupus and a normal life. I just remember, this day is here and despite being tired, achy, bloated, or bad skin during flares, I push to enjoy the day. Not letting lupus win all the time is a battle constantly fought, but, for my family's sake and my sanity I moderate my time spent laying around.
I am not suggesting your health should be in jeopardy, but, I do stay out longer and alternate weekends laying down so my teenager is able to enjoy her mom. Just let your guard down, don't stress out and answer the questions that your four year old has as they come up. Don't put too much pressure on your child. If they want to know then they will ask.
Until then just enjoy every moment you are well.
Happy Holidays.
Fessissima said:
I was diagnosed with Lupus a few days before Christmas in 2007. Since then, the holidays just haven't been the same. So around this time, I'm usually super depressed and wondering what will become of my life in the future. But I try really hard to put the negative feelings aside because I have a small daughter, and this time of year means so much to her.
It's hard trying to explain to a 4 year old why you I sleep so much, or why I'm always hurting, or why I have to take so much medicine. But I try to cope as best as I can.
For anyone who could use a good laugh this time of year, I've included below the link to one of my favorite humorists, David Sedaris, who reads an excerpt from his very funny "Santaland Diaries," which documents his time working as an elf for Macy's one Christmas:
I can tell you this...thanks to HIV/aids, odds are with you that you will live a nice long life! I have had sle since early eighties and i bet most of my life. I was in my late twenties about to get married, n i am being told i might have cancer or other life shortening diseases...not happy thing to get married knowing.
Back than if you had Lupus it was just beginning to change from death sentence to chronic illness...now it is chronic and we live long lives. I am not saying you will feel good..many days you will not..but you should be able to enjoy most all the same things you did before.
It takes a few years to adjust to being told such a life sentence...it has everyone i known so you are not alone. Give yourself some time to grieve and work it out...but realize that you can go on live happily and enjoy most things..if not all.
Plus, my nieces fiance is working on a cure for lupus and other auto immune disease or at least a drug that will make us better greatly. Until this year..there has not been drug out that was for lupus..we took from other ones!
So i hope you did have a Merry Christmas...but if not it is okay...go ahead and grieve for your loss it is huge...to lose your health is a huge ,,,take all the time you need.
But with the New year..comes hope for new meds treatments etc to make our lives more enjoyable and normal! I hope this helped you in small way...good luck and feel free to write me any time...
I am not suggesting your health should be in jeopardy, but, I do stay out longer and alternate weekends laying down so my teenager is able to enjoy her mom. Just let your guard down, don't stress out and answer the questions that your four year old has as they come up. Don't put too much pressure on your child. If they want to know then they will ask.
Until then just enjoy every moment you are well.
Happy Holidays.
Fessissima said:
I was diagnosed with Lupus a few days before Christmas in 2007. Since then, the holidays just haven't been the same. So around this time, I'm usually super depressed and wondering what will become of my life in the future. But I try really hard to put the negative feelings aside because I have a small daughter, and this time of year means so much to her.
It's hard trying to explain to a 4 year old why you I sleep so much, or why I'm always hurting, or why I have to take so much medicine. But I try to cope as best as I can.