View Full Version : no support for the weary

10-12-2004, 07:07 AM
Hey! It's me again. What a weekend! Could not get my meds from the clinic they are behind (plaquenil and prednisone) So I didnt take any for a few days. Got sick. The pain was unbearable in my shoulder. It looked like it was dislocated. Went to hospital. One shot of morphine(did nothing for the pain) they issued some meds to get me by until clinic gets their act together. So my parents thought it would be nice to come over the next day and help me out with some things around the house. BAD IDEA! My Dad was not in the mood so things were bad from the start. I had a bad leak some where in the pipes. Thats the only thing I wanted looked at. He said he thought it was the toilet. I said ok I will be able to fix that(no problem when I feel better I can do it) Actually it turned out to be the garden faucet( my 16 yr son fixed it later that day) anyway my grass has not been cut in 3weeks (mostly due to the hurricanes that came thru our area and me being quite sick lately) Well I was in trouble from my parents for not having grass cut ( even though my mower is broken and I am too sick to fix it right now, I do all repairs because I am too poor to pay to have fixed) Well then my Dad noticed I did not bury the satellite cable yet and began to yell at me for that. Well after being in the hospital the night before for 6 hours and sleeping only 3hrs I began to cry. I try so hard to keep my home nice and it is hard when you can hardly move and are so weak. well I became mad and yelled back so they left and told me not call them ever. OK fine...thanks for the help. I was sooooo mad. I dug that trench....20 feet long and buried the cable the same day! Yes I am paying for it. I swelled up 3xmy norm and could not move. But I saved the world by burying the cable. I just cant keep up with daily chores on demand...they get done just not lickety split. I am so mad that my parents upset me all the time...I could really use support. One last word....My Mom let me know that no one believes that I am sick. If I did not have 3 children I would crawl I a hole and be sick. But I cant I have to push myself all the way and if that makes it look like I am not in pain fine then. I have to take care of my kids. They have always been first in my life. I have to go to work to feed them and give them a home. My joints dislocate and the Dr says get wheelchair etc... But keep in mind my Mom says no one believes. OK so what. I have to wake up the next morning and push on. Oh yeh keep in mind I am a single parent that is why I do everything on my own. Oh yeh I have to quit smoking that is why my parents are mad. I am working on that. It is hard when they stress me out all the time. OK vent session done. Thanx for listening

10-18-2004, 10:52 AM
Oh My God!!!
I know that they are you parents and that you love them!! But do these people have any idea what LUPUS is?? Have they spent any time at all trying to learn about your disease and its symptoms?? I mean, it never ceases to amaze me how selfish and uncaring people can become!!
The fact that you went out, over exerted yourself, and buried that cable anyway amazes me!! I don't even have the strength to think about doing that type of chore!!!
It was their idea to come over and help and then all they did was get angry at you because of what you HAVE NOT done!! And then, to tell you to never call them again!!! That is extraordinary to me! Especially the part about no one believing that you are sick!!
These people need to be educated about your disease, its symptoms, your medications and their side effects. Until that happens, I don't know that you will ever be able to count on them for support.
Try not to push yourself too hard, you may find that you are doing more damage than good. Because of the nature of our disease, you must give yourself productive rest periods and you must take care of yourself. It sounds as if your children are willing to help you, allow them to do that (even if they do not do things absolutely perfect, praise them for their willingness to help)!
I wish you the best of luck, and remember, we are here to provide you with support, understanding and compassion.
Take Very Good Care Of Yourself

10-18-2004, 11:55 AM
Thank you for your love. Yes you were right. I over did it and payed the price.........oh..boy.. my hands hurt from digging....slap me if I say I will do that again!
Thank you for your support.

11-02-2004, 12:25 PM
You are more than welcome! Are you feeling better now!
And, by the way, consider yourself told off if you over exert yourself like that again :lol:
Your health and well being are so much more important than the chores that cannot get done!!
You Matter More!!

Peace and Blessings

11-07-2004, 10:28 PM
wow..how did you survive that going without your meds thing? i thought prednisone was not a drug that you can just stop taking...plaquenil you can go without for a few days but if you're steadily taking pzone and then you abruptly stop then you will endure serious withdrawals...no wonder your poor shoulder hurt so bad! you poor thing!:cry:. sometimes life is hard ya know? i have my awful days as well...i do have a question though...did you know that you had lupus when you had your kids?? how did your pregnancy go? it amazes me how strong you are! i'm going to have to agree with saysusie...i could never see myself digging a trench!! i would probably have to be hospitalized the next day!! LOL! i'm really sorry that your parents treat you that way...some people really don't understand lupus...because unlike a lot of diseases out there us lupies can look totally normal...some of us don't look sick...especially if we're on prednisone and we are nice and round :D .....so because you LOOK normal people think 'ohh there can't be anything wrong with her.' which is sad...but it's ignorance that's all...they must educate themselves on your disease....and honestly if they aren't willing to do that you really don't need that in your life...it's hard enough living with this illness than to have unsupportive people knocking you down...i wish you all the best...keep us posted on how you're doing! :D
take care.

11-11-2004, 10:45 PM
Amen to that, Tammy.......about "looking normal" so you must be well. My family knows better and can detect the nuances in my varying health, but the one that cracks me up the most is going to the Pharmacy. I've had SEVERAL pharmacists and techs ask "Are these medicines for you?" Or "you don't look like you're on Prednisone" or my favorite so far from a pharmacist has been "you know you're not supposed to take these high doses of Prednisone for too long.....this is a very high dose...hmmmm." So then I always have to into "I have Lupus Nephritis and 4 MDs I work with, etc" You guys know the drill! Now I get my Rx's mail order and no annoying questions! Except I have to say the two guys at my Target pharmacy of all places have been the most kind to me (Target, of all places! I usually go to local pharmacies!)

Anyway, sorry there is no "mail in pharmacy" for parents and so sorry that yours are still in denial, kkgadro! It doesn't seem to be helping them or you, for sure for them to keep it up.

Best wishes,

01-31-2005, 09:44 PM
wow i just read your story about your crazymaker parents.
i can relate to some degree, having a family that just doesn't "get it."
my older sister actually resented me because she thoguht i was getting too much attention because i was sick and our other sister was pregnant, so the older sister lashed out at me because she was on the pity pot that she wasn't getting anough attention. Puh-Leeze!
how do some people take your paina nd suffering and make it all about THEM?
my mom does that too. she ran around and told erveryone in town i had lupus. i didn't want everyone in town to know- i wanted to choose who i told and at what point, because you know how some folks treat you like a leper or like you're made of glass and act all weiord. so i bring it up and my mom bursts into tears and blames herself for giving me bad genes. i mean really, how di this become aboubt her???
so anyway i think your parents have some "issues" and trouble accepting your illness. (obviously)
i learned a long time ago that some folks blame the "victim" because if they can convince themselves that either you're imgaining this whole thing or you brought it on yourself, then they can fool themselves into thinking it can't happen to them. it's really out of their own fear that they act so horribly. when i realized that, it was easier to forgive the horrible thigns people would say to me, like "you must have some hidden sin in your life" (and that's why i was sick)

BTW i'm originally form clemson, jsut down the road from you!
I live in FL now.

01-31-2005, 09:49 PM
oh yeah and did i mention that at the time my sister was turning my illness into a sibling rivalry thing, i was 26 and she was 29?
aren't we a little old for such behavior???? :x