View Full Version : Here I go again

dassar RN
08-25-2009, 07:55 PM
Hi everyone,
I need to find out if there is any form of returning to normal. Here I am doing what I need to do: change diet, doing exercises, stretches, taking my medications, resting and I still feel like@!#%** crap. I had a terrible week last week and here i was thinking that i am getting this beast tamed!!!!! well it is back again, decided to do some vacuuming and I can barely lift my arms to even comb my hair. The LUPUS BEAST is back again with my ribs hurting and the nine yards!!!! I have a follow up appt. with my rheumy on thursday I know he is not even going to think of releasing me back to work in this condition.

:hissyfit: Please give me some hope somebody that this lupus thing will be put to rest.

RIP puhlllease LUPUS!!!!

Dassar RN

08-26-2009, 08:28 AM
hi dassar rn,

yes, this beast will rest again, but he will also raise his ugly head again...wheneever he wants to and as ugly as he wants....i am so sorry you are having such a tough week...i hope your rheumy can find some relief.

maybe your dr. will want to try some new treatment options, but sometimes my rheumy just shakes her head and tells me that she is so sorry that i feel so badly....sometimes they just can't do anything to help us.

hold on for a little longer....hopefully you are headed to the top of the roller coaster ride, and will be able to enjoy the beautiful view for a while.

dassar RN
08-26-2009, 10:20 AM
Thanks Mountaindreamer,
I am trying to think positively.:yes: This beast will definitely not get the better part of me. I know my rheumy is going to just say it is a part of the LUPUS cycle.:unsure:


08-26-2009, 11:05 AM
It is just like Phyllis said, you will have the beast for a while and then you will be rid of him for a while, just so that he can come back again.
I have learned to live with the !@#$%^&*, but I enjoy when he leaves me alone, even just for a short time. I have so many bad days, that when I do have a few good ones, I enjoy them, I live for those. I hope you can somehow manage your bad days and look forward to the good ones.


Angel Oliver
08-26-2009, 11:09 AM
Always remember you are stronger than the wolf.Look how far you have come so far.Im sorry you are so bad right now,but YES this will pass and you will begin to ease.Just take your meds,keep appoitments and most of all rest.You know we all care about you,so keep posting here for comfort and to know you are not alone.Lupus is a bully,but you will get through this,hang in there.

Love n gentle hugs

08-26-2009, 01:03 PM
The lupus beast will be put to rest at some point it doesnt last forever. I know its tough and exhausting, but things will get better. Stay strong.


08-27-2009, 09:22 AM
Just don't understand this disease--I had consultation with dr., he told me if u think lupus u will have lupus--dah--I wish I could think away pain. I know now, looking back, I have had this for a long time. I am 64, when I was in my middle 20's I had the rash on my chest, back--the same one I had about 10 yrs. ago when the derm took a chunk out of one and told me I had discoid. OK, no more was said, dangers, what it can lead to etc. I understand in the 60's not much was known like today. Since then I have been on the web reading everything I can about it. I do have good days and bad, I just don't know what to attribute to the disease or just normal old age stuff. Every time I get a twinge of ache, right away I say LUPUS!! Before the rheum. told me I had SLE, a month ago, I would have brushed these same things off as old age. I have been back and forth to my regular dr. for at least 4 yrs. with complaints--I hurt all over, tired, my eyes are dry etc. He sent me to one idiot rheum. who walked in, said it's your age and the weather, live with it. Until my new rheum. ran extensive blood work and x-rays did I find out. Just don't know what to expect. Love all of u!!:unsure:

08-27-2009, 10:34 AM
My friend told me that another one of her friends' brother has it. She said that her friend said that it's all psychological too.
*ranting now* Well guess what? If it is, How am I supposed to get rid of it? Say "Lupus go away" three times, while spinning in front of the mirror? *rant ending*
I don't think it's psychological. Why would anyone want to hurt so much?

08-27-2009, 12:17 PM
Hi Drassar RN, you mentioned in your post that you had a terrible week last week...did you mean pain wise or work and stress wise? I too have been in bed for much of last week and this week....and I had had a pretty rough week workload and stress load before that which to me accounts for the lupus week last week....
as you say it just never ceases to amaze me just how difficult Lupus can get and how it lets you know who is boss right out of the clear blue sky...
there are times like yesterday I was so sick I literally could not lift my head when I woke up...my poor hubby just kneeling beside me on the floor and at a total loss of what to do....he gave me tylenol 3 and the next time i woke up it was about 11:30....
then today I was up awake at 6:30 out the door by 10:00, took Mom for lunch and to do some errands...still not feeling tip top mind you but I don't wait for good days anymore they are just to few and far between...I go when I can get up pain or not....mind you I'm ready for a nap again now and it's only 3pm.....I am so thankful i have a job I can do at home and on my time....don't know how anybody could handle this and going off to work too...
lots of rest and take special care and you will out-smart the wolf....Sandra

08-28-2009, 02:16 PM
AWWWWW, Im so sorry you are dealing with this Dassarr:no: Dont EVER think though that the CHANGES you HAVE MADE dont matter, THEY DO hun. I too have flares DAILY BUT my drs have even said they would hate to think about WHERE i would be IF i didnt DO the things that ARE IN MY CONTROL to make myself at least a bit healthier. My daily exercise,stretching,vitamins,herbs and eating right DOES HELP ME and i WOULD be WORSE if i didnt live a healthy lifestyle. My dr is hesitant now to start me on Plaquenil BECAUSE my eyes have gone through alot already and are still not as in good of shape as he would like them to be. Im not defeated though, i STILL WILL continue my HEALTHY lifestyle because my body thanks me in many ways that COULD be Worse if i didnt do what i DO. Hey, at least it gives you an excuse to get out of vacuuming! LOL :yes:

08-29-2009, 10:36 AM
What you do to make yourself feel better is doing something worthwhile. Just do what helps you feel better, and keep up a healthy lifestyle. I sleep, exercise a little bit when I can, and I wrap my arm (my problem area). See what works for you, and continue to do it unless the dr says that you shouldn't.
PS. Sorry about the previous post. was definitaly NOT helpful. I'm sorry.:hissyfit: