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ritzbit
07-19-2011, 08:13 PM
I need to start yet another "my family doesn't understand thread". I am listening to them talk in the other room like I cant hear them complaining about how my reclining chair scratched the paint on our newly painted walls. I told them AWHILE AGO that the chair kept bumping into the wall and they said "well move it" like that was so easy. I told them I couldnt and someone needed to help me and they dropped it. Now there's a huge gash on the wall and my step dad is exploding about how "well she'll need to fix this" like its entirely my fault. When sitting I still have to sit with my legs up, therefore that chair goes back. Its not my fault they didnt move it when I told them about it in the first place over a month ago and they choose not to move it. My mom complains all the time still about these damn dishes, when I thought we had come to a nice agreement that I would just unload them during the day because I couldnt get them done fast enough for her after dinner. So now, when there is NO RUSH, she STILL RUSHES me. I do not understand why, because the point was to give me more time to get them done. "Brittney I dont understand why it takes you up to an hour to do a 5 min job" URGG I am SO sick of hearing that you dont even know. I blew up at her and told her to just stop when she kept saying "if you'd just excercise....Your doctor always acts like that'd make it better". Im sure, if my legs didnt HURT that would help. If they were just tight and unused Im sure that would help. If my back wasn't always hurting, not just a little sore, Im sure that would help. But Im pretty sure that exercising when all these other problems are going on I would just make it WORSE. Im not being a wimp, or over exaggerating, or being lazy I F*()&)(*&*@ HURT. I was wanting to get away from all this at school, but now I cant. Moving in with my boyfriend is sounding more and more appealing....

PS My dad is on yet another vacation without me. Cool right?

ruziska
07-19-2011, 09:47 PM
Sorry they don't get it kiddo. There aren't any magic words, hexes or spells that you can put on them to make them understand either. As far as your chair is concerned, I've got the same problem. I put an afghan on the back of the chair and drape it down the back so that cushions the chair when it bumps into the wall. Also comes in handy if you're chilly and need a blanket.

lovedbyHim
07-19-2011, 10:33 PM
Pettiness...life is short! Why Pester you about the petty little crap? Guess what? I don't have a dishwasher & left the dishes in my sink for two nights. That's right. I worked, came home, ate and slept. I would be beaten for that I'm sure. Get her the book, "Don't sweat the small stuff." After all your young. You have plenty of time for the big stuff, like moving in with your boyfriend. That mark on the wall will get a lot smaller real soon. Lol

We had a saying in our home as the kids were growing up. "People are more important than things."

steve.b
07-20-2011, 07:33 AM
Get her the book, "Don't sweat the small stuff."

i first read this book, when i started counselling.
it is great.
get one for mum, ............ and one for yourself.

Saysusie
07-20-2011, 09:44 AM
I am so sorry that your parents are regressing back into "non-understanding". When you mentioned the fact that your Mom keeps telling you to exercise, it stabbed my heart. I remember having that same conversation with my daughter and her response was much like yours. What I was really asking her to do was to just move her muscles, not get up and do aerobics. However, that is what she perceived in our conversations (actually arguments) and she got angry with me. Finally, when we calmed down and were able to talk about it, she understood what I was asking, and I understood what she was saying. We agreed that her form of exercising would be just sitting in a chair flexing and pointing her feet, lifting and raising her heels, using canned goods as weights to lift her arms. She did this every day for five to ten minutes. It did, actually, make her feel a bit better and a bit more energetic. Mostly, it helped to alleviate some of her depression because her body felt a bit better.
As Lupus patients, we are advised to engage in some form of exercising (moving our muscles) in order to help to: improve our muscle stiffness and soreness, relieve our stress, help our heart, increase our muscle strength, increases our range of motion, increase our energy level, and to help our bodies to fight off some of the symptoms of this disease.
Please do not feel that I am taking sides here, because I am not. It is important that your parents understand your Lupus and how it affects you. The book that was suggested is, in fact, an excellent book both for you and your parents. Perhaps, after things have calmed a bit, you can have a talk with your parents (again..I know) to come to a compromise that fits all of you. Gently remind them of the previous agreements that they seem to have forgotten, but that you are still abiding by. Also, I do, however, want you to consider the possibility of some type of exercise in order to engage your muscles, please :-)

Peace and Blessings
Namaste
Saysusie

ritzbit
07-20-2011, 11:07 AM
I try to do things when no ones around. I dont know why I dont like doing my "exercises" with people walking in on me. I guess I feel dumb doing them because Im doing the most SIMPLE things and they're hard. Everything I do just makes me more sore. Even swimming made me sore =( whether that was from being in the sun or actually swimming I dont know but thats the only way I can swim. I used to feel a little better after swimming but it just isn't doing it for me anymore. I just feel like nothing helps in the way of exercise.

Peridot20_Gem
07-20-2011, 11:56 AM
Hi Ritz,

I'll tell you why you like doing stuff while they're not around because if they saw you moving at your own pace they'd think you was ok to do stuff all the time....i ah being funny mate towards your parent's but how childish can you get and my god you've been diagnosed with so many issues they should be BENDING OVER BACKWARDS with worry...instead of ranting on.

It sounds to me like you come from an home where nothing is allowed out of place and everythings on a schedule...instead they should be thinking how your trying to cope.

Ritz bipolar as made me a clean freak over the years but if i had a daughter with so many Lupus issues as you do...christ i'd be doing the lot and letting you go at your own pace and if you wanted to help in anyway, then that's a nice bonus for any parent's.

magistramarla
07-20-2011, 01:34 PM
Ritz,
I agree with what Tammy said about "people are more important than things". My hubby became quite the expert at patching, replacing and repainting drywall. It seemed that the walls of the house were our kids favorite thing to damage. He just shrugged and fixed it. My son watched and learned, and has since surprised room-mates by knowing exactly how to repair some damage done in a house that they rented. LOL - his Dad was proud of him!

I also know what you mean about the exercise. I have a rheumy who seems to think that if I would exercise every day, I wouldn't have stiff, sore muscles or numbness. Like you, I've found that if I exercise one day, I'm more tired and sore the next. I'm doing PT now, and the PT has even found that she has to be extremely slow and gentle about what I do, or my problems just get worse. I also prefer to do my exercise without anyone watching. I do my leg stretches before I get up in the morning, when I'm alone in the house.
I'm looking forward to getting Conner, my service dog. I know that he will require some walks and exercise, so he will give me a really good reason to get out and walk more often.

Hang in there, kiddo. We all understand what you're going through.
Hugs,
Marla

n.mac
07-21-2011, 02:25 PM
I find that swimming in the evening works better now that the sun is so hot- I find it ironic and somewhat humurous that the LFA in chicago has lupus awareness walks scheduled soon.The last thing I want to do is go on a long walk in this heat and sun!
As for your difficulty with your stepdad-this sounds very familiar I have 5 kids-mine hers and ours. (youngest 2 girls 15&19) Believe me i given that speech complaining about how long it takes my kids to do thier chores/and how come i have to remind them to do thier chores/and how come they do thier chores half a**ed.
I have always tried to treat all the kids the same but I'm sure at some point all the kids have felt mistreated.
One thing I have learned from lupus is tolerance-Nothing beats chronic pain to teach about chronic pain. Its one thing to be informed about someones pain or difficulties its quite another to experience it first hand.
Most kids and parents go through rough spots -I hope things improve for you(remember parents are just big kids) ...Niall

giggle
07-21-2011, 03:31 PM
I completely understand Ritz. I know for me, someone complaining I dont exercise enough is tantamount to saying "you are too fat and lazy, get up and do something". But that may also be from when I was a teen and my father used to constantly make me do laps of our neighbourhood because he said I was getting fat. I wasn't, not in the slightest, I had a chubby pixie face and early breast development but I was very sporty and played football and took a hike every afternoon after school. What he did... ruined my self esteem. I ended up giving up sports and becoming self conscious... and then I DID become fat. I hate my father for that, among other things.

Here is an idea... instead of your lazy parents giving you meaningless and empty advice to exercise... why dont they suggest family outings that will involve that exercise they want to push you towards. No? I bet they are too lazy to do something like that. My daughter needs to exercise to improve her co-ordination... I dont sit around on my lazy butt criticising her... I say "Lets go for a walk!" and I take her out with me for a walk. Occasionally I tell her we will stop into the corner store and get a sorbet on the way back for a job well done.
Your parents could take you out for an easy stroll around the shopping center. If I can do it... a working mum with lupus/hashimotos... then they can certainly do it! And if they cant, then they need to get off your back : )

I have no time for lazy parents criticising their children... instead of actually parenting them by taking a second to instill behaviours that they will be able to carry on into adulthood.

Sorry Ritz for the rant! But its a subject close to my heart. If your parents didn't want the wall damaged, they should have moved the seat away from the wall or taken steps to prevent it from happening. They only have their own lazy butts to blame! We teach through example, not through belittling our children until we squash their spirit and have them bend to our will and conform to our ideas.

tgal
07-21-2011, 04:20 PM
Swimming in the evening doesn't work around here your only option really is indoors. The Gulf itself was 88 last time I heard and most likely going up. More like a sauna then a pool LOL

ritzbit
07-21-2011, 04:43 PM
So me and my mom got into another arguement tonight. I told her I was looking at clubs for college and how I think color guard already started and she said how the hell do you think your doing that if you cant do the 5 min job of doing the dishes. URG. I did color guard for 2 years before our band director got rid of it and I've wanted to start doing it again since. It look alot out of me the last year I did it but I really loved it. I had to wear special things on my arms to be able to do it but it was worth it. How can she be the one ranting about getting exercise and telling me that I basically shouldn't do anything that would challenge me????? URG. I have the spoon theory pulled up on her computer right now so she'll see it next time she gets on. I cant remember if I've made her read it before, but even if she has she needs the reminder. URG.

n.mac
07-21-2011, 05:13 PM
One of my girls just started color gaurd(high school) I like it -so gracefull. my daughter is not big on exercise(or dishes)
but anything that makes exercise more fun can't be bad-I try to be supportive and let her try anything she wants-even if she's not real good at it-you won't know if you don't try-just be carefull sometimes when I push myself it takes days to recover.

Peridot20_Gem
07-21-2011, 05:45 PM
Ritz,

I wish you all the best mate if you start it backup and especially if it's something you enjoy...your last bit as made me laugh mate leaving the spoon theroy on your moms computer.

(I hope there's no furthur argument)

CWARD
07-21-2011, 05:56 PM
I AM say SORRY YOU are going throught this...i dont understand. my now 22 daughter has been in and out of hospitals limping.....kidney biopsies, heart cathertizations, blood transfusions and more from lupus. she withdrew from college 2x.....i made accomadations in the house all over the place.....we would laugh her myself and her brothers and the amount of cushions everywhere. i never minded her in a bad flare beeing in a bathrobe still when i came home from work......i have the disease too...i cant say all her friends got it.....she lost many.....her dad never got it either.....hang in there.....maybe its fear or frustration they cant fix it.....all i know a hug a laugh works better.....

giggle
07-21-2011, 11:51 PM
Ritz, if your parents wont be mature about it (clearly they arent from that comment) then you should try to be the mature one and sit your mum down to talk. By your age I had realised my parents were never really suitable people to be parents and were never going to grow up LOL so I started taking care of myself.

ritzbit
07-23-2011, 05:03 AM
So is it bad that I'm hoping for some understanding from everyone since my step dad just found out yesterday that he has bursitis? In my mind it might as well be the same problem I have for arguements sake. His right heel is all inflammed around the joint and tendons and muscles. So I just want to be a smart ass and be like: "now imagine, that pain and inflammation in your foot is EVERYWHERE. Stay with me. Its going up your legs and into your knees and suddenly its in your back! And now its in your shoulders and arms and neck too! Goodness that must make doing things hard huh?" However, I dont think that would go over well. Its been buggin him for months and his regular doc just thought he pulled something I think and when it didnt go away they sent him to some foot specialist or something who did xrays and gave him a script for 10mg of prednisone. I gave him mine because I cant use it because my body just loves medrol more lol apparently if his foot doesnt get better with the steriods soon HE'LL be going to see a rheumy, just like me.

steve.b
07-23-2011, 05:19 AM
now you can show him, you are a compassionate person.
let him know you understand his pain.

Peridot20_Gem
07-23-2011, 06:45 AM
Ritz,

Steve's correct in what he's saying...show them mate your bigger than them and you've got love and compassion for other's who are ill.

It take other's sometimes to see this to actually make them realize.

Terry xxxx

Linda From Australia
07-23-2011, 06:50 AM
So is it bad that I'm hoping for some understanding from everyone since my step dad just found out yesterday that he has bursitis?

I agree with Steve, this is your chance to help you step dad, and offer your support. Hopefully they will come to see how compassionate you are even though you go through so much more pain and suffering. This is only my advice, but offer to get him his hot cup of coffee, give him his snacks etc... while he sits on the couch and rests. Tell him you will run around after him, but make sure that you donít hide the fact that you are in pain. Donít say anything about the pain you are in, just do your usual hobbling around the place. Tell him also some things that he could do to help him out. Like when he stands, stand on the good foot, taking the pressure off the bad foot. And when he is out, walk near the walls instead of in the middle, so if he looses balance he has a wall to catch him. Tell him what to do when he has a sharp pain, how to breathe through it etc.... you will be amazed about how much advice you can give him.

Just a thought, why isnít your step dadís doctor organising a steroid injection for his foot, it is far more effective than having a systemic medication.

ritzbit
07-23-2011, 06:59 AM
Thats what I read online too so Im not sure. His doctor didnt even tell him to take the prednisone in the morning which my rheumy has always been firm about because thats when your body naturally makes what its helping out (cortisone right?). I reminded him to take it this morning because he usually takes all his medicines at night and warned him that it tastes nasty if you let it sit lol I dont think he believed me until he took it and said oh ya that tastes weird going down. lol

Peridot20_Gem
07-23-2011, 07:07 AM
Ritz,

As soft as it sounds you giving him advice and helping like you did...may make him think of what you do not to suffer with meds either.

ritzbit
07-23-2011, 05:55 PM
We are doing a bunch of family things the next two weeks because my step dad is on vacation. We went to Coney Island today and it was SOOO hot. I almost passed out multiple times. My joints always get swollen in the heat and sun (anyone else?) and so my knees started acting up and I started using the umbrella I brought for the sun as a make shift cane. Now my arms hurt to, from leaning on them so much. I was having a really hard time keeping up, and my family kept leaving me in their dust. I had to walk this huge parking lot on my own and could barely even stand and was almost crying and when I finally got to the car I threw up. I hate that Im always the slow one, and I hate even more that they know that and leave me anyway...

ritzbit
07-23-2011, 10:13 PM
My entire body is ITCHY and my face is swollen and red =( I hope all this goes away before orientation later this week =( I dont wanna stick out as the kid with problems right from the get go.

Linda From Australia
07-23-2011, 10:24 PM
Are you back home at the moment? What about having a cool shower and some cool drinks, along with some fruit that you like. Stay out of the sun for a few days and try to rest up and have some fun indoors. It really is a tough time for you, when you are on vacation and it is such a pain.

I went interstate for a work conference last week, my husband came along as well, and we had a few days vacation after the conference, but I tell you the whole thing was one big pain, and at times I had wished I never went. It just set me back so much. But then I remember how much fun my husband had and how much we enjoyed each others company, so I suppose it was all worth it in the end.

Just smile through the pain and suffering Rizbit, and remember the good parts of your vacation time. The euphoria will send good endorphins to where they need to go in your body. I have no idea what I just said, you are the one studying some sort of medical studies, I am sure you know what I meant.

ritzbit
07-23-2011, 10:43 PM
Its almost 2 in the morning here. I felll asleep in my recliner and was woken up by my mom freaking out because she found lice on my little brother. So now Im going to be sore with no sleep! YAY =( so I had to stay up to let her check my head to make her feel better. It hurts right now to even type. My body is so hot. My face is a MESS. Even my mom agreed on that one. Sooo lesson learned, when you think you can handle the heat remind yourself that in reality you cant lol ugh =(

Peridot20_Gem
07-24-2011, 03:40 AM
Ritz,

You need to keep inside mate and keep cool and christ knows how you did that walking because it's like punishing yourself, if you can't do it in future your parent's must understand...i have swelling of my hands/knees bad in heat but how you face swells, mine burns out like my heads been in the oven then dehydration sets in (Then it's a water job and i hate the stuff..it's 66f here and i can't stand it already)

I can only advise you ritz with what your going through, to try not to do those journeys again because you going through the mill already without an added bonus of suffering ontop mate.

Hugs your way Terry xxx

ritzbit
07-24-2011, 08:37 AM
My whole face feels weird. Its really itchy! It feels tight. I was eating popcorn last night and had to keep taking breaks because it was literally wearing me out bringing my hand up to my mouth. It was pretty terrible. =(

lovedbyHim
07-24-2011, 08:44 AM
Gosh I hope you feel better ritz. That sounds miserable.

Peridot20_Gem
07-24-2011, 04:20 PM
Ritz....i really hope you recover soon mate and please take it easy.

Hugzzzz to you Terry xxxx

ritzbit
07-24-2011, 05:31 PM
Im so tired and so sore. Im just mad at everyone and everything today. I hate days like this. It doesnt help when everyones driving you crazy.

sharpiessave
07-24-2011, 06:24 PM
Ritz, dude, I have so many of those days. When everything and everyone sucks. There's not a measurement high enough for the suckage of the world in general, and the people around me in particular. Nothing can make me smile, nothing can bring my head out of the funk. I'll sit on the smoke bed all damn day long, catching the reflection of the frown on my face when the computer screen goes black. It always surprises me how miserable I look in those split seconds.

So here's my idea. It sound ridiculous and juvenile, but it's been the only thing to make me feel something other than hate on days like those. I take a Sharpie and write exactly what I'm feeling someplace on my body where no one else will see it. Like my stomach or high up on my thigh. In colourful capital letters I write exactly what I'm feeling. It's usually something like "F IT. F ALL OF IT." But of course the curse words are filled in, cuz what's the point in it being a secret if you can't be completely honest? The temporary tattoos have ranged from, "STUPID, STUPID BROTHER" to "I'M COOLER THAN ALL YOU MF-ers PUT TOGETHER." Somehow, for me, just knowing it's there makes it easier to deal with people who piss me off. They're standing right in front of me being total idiots, and little do they know, there's a sign on me already calling them just that.

Dude, please know that someone in Missouri is hating the people driving you crazy, all on your behalf. Also, it may tickle you to know that right now, just to the right of my belly button, in multicolored wonderfulness, is printed "RITZBIT IS HARDCORE; EVERYBODY ELSE SUCKS".

Sharpie

ritzbit
07-24-2011, 06:52 PM
You seriously just made my whole day, oh my god lol I tried to nap and woke up burning up so I feel like shit then got on here and saw that lol Thank you.

sharpiessave
07-24-2011, 07:18 PM
Awesome. I got your lupusy back dude.

steve.b
07-24-2011, 09:34 PM
time to go for a drive..............
and get yourself an icecream

because you can

ritzbit
07-25-2011, 07:42 AM
I would if my legs didnt hurt so bad. I dont want to drive like that.

tgal
07-25-2011, 10:48 AM
I have had a complete turn around by my family this week. It has been such an amazing turn of events I am not even sure how to handle it.

My family (2 brothers... 13 and 15 years older then me) have never thought I was really sick. One brother and his wife don't really believe in doctors or medicines. They make things out of herbs and have since they got married. My other brother doesn't really "get" that I am ill. I have 1 daughter and 1 niece that have been been very supportive and helpful to me.

This last week everything changed. The brother that is in the hospital is the one that that never went to the doctor. He went about 15 years ago and they put him on BP meds. He didn't like the way they made him feel and they were expensive so he never went back. Last weekend he had a stroke and is still in the hospital. They can't figure out why his blood pressure is not responding to medicine. I went down last Friday and have stayed with them trying to help as much as possible. No one has ever uttered the word "lupus" about me until this weekend. Everytime I was introduced to someone from the hospital it was "This is his sister, Mari. She is down here helping out even though she has Lupus". I became information that was accepted and even used to find an answer. My health was parts of discussions when deciding what I could and couldn't do. They actually made sure that I didn't overdo it and kept my my health in mind when we were making decisions. I never really thought it bothered me (much) but I found out this weekend how much relief there was when I am not having to pretend with my family because. If I didn't pretend, I would have to hear about how my problem was that I was on too many medicines which upset me and I would end up in a bigger flare because I was doing things that I shouldn't have done.

If anyone is reading this and has a friend, family or loved one with this disease I just wanted you to know how much acceptance and understanding mean to those of us that are ill. Not only does it help mentally and emotionally it helps physically.It can help because we can admit when times are not good and really need to rest and if we rest when needed we have more good days to be a part of the family we love

lovedbyHim
07-25-2011, 11:10 AM
I have had a complete turn around by my family this week. It has been such an amazing turn of events I am not even sure how to handle it.

My family (2 brothers... 13 and 15 years older then me) have never thought I was really sick. One brother and his wife don't really believe in doctors or medicines. They make things out of herbs and have since they got married. My other brother doesn't really "get" that I am ill. I have 1 daughter and 1 niece that have been been very supportive and helpful to me.

This last week everything changed. The brother that is in the hospital is the one that that never went to the doctor. He went about 15 years ago and they put him on BP meds. He didn't like the way they made him feel and they were expensive so he never went back. Last weekend he had a stroke and is still in the hospital. They can't figure out why his blood pressure is not responding to medicine. I went down last Friday and have stayed with them trying to help as much as possible. No one has ever uttered the word "lupus" about me until this weekend. Everytime I was introduced to someone from the hospital it was "This is his sister, Mari. She is down here helping out even though she has Lupus". I became information that was accepted and even used to find an answer. My health was parts of discussions when deciding what I could and couldn't do. They actually made sure that I didn't overdo it and kept my my health in mind when we were making decisions. I never really thought it bothered me (much) but I found out this weekend how much relief there was when I am not having to pretend with my family because. If I didn't pretend, I would have to hear about how my problem was that I was on too many medicines which upset me and I would end up in a bigger flare because I was doing things that I shouldn't have done.

If anyone is reading this and has a friend, family or loved one I just wanted you to know how much acceptance and understanding mean to those of us that are ill. Not only does it help mentally and emotionally it helps physically.It can help because we can admit when times are not good and really need to rest and if we rest when needed we have more good days to be a part of the family we love

Oh Mari this is a beautiful message. This is one of those blessings out of a mess. I truly wish you well dear girl!

ritzbit
07-25-2011, 11:54 AM
I'm glad your family has been more excepting with you.