not a good weekend

[helloos]

Hello everyone.

Hope everyone's weekend and fathers day went well.

My weekend was very busy - as you know still have not recovered from last weekend......so it did not make matters better. My father and wife came on Friday and is staying with us for 1 1/2 weeks I think. Up late on Friday, Sat. went to my step fathers for a good part of day then back to my house and more company, father's day went to Boston for an award my son got - all scholastic - which was awesome to go to, but a long day and then more company that night for some to see my father. It stinks that everyone piles into my house to see him because he is staying with me. I said Sunday night at 9:00, I am going upstairs to lie down because I am really tired. He says " you have a house full of people and you are going to bed" I said yes, I am tired and cannot do this anymore. Now, he knows about the Lupus, has read about it, etc., so his comment was unnecessary especially him knowing that I have not stopped.

One thing I won't get into detail about so this is not long is my father said something very rude to me and almost started an argument but what he said I was very upset by. This was 24 hours after he was with me.

The other part I would like to vent about is if you remember the topic about the speech, switching words around, forgetfullness that so many of you could relate to? Well, it was pick apart mom/paula day Sunday. I was making coffee for my sister n law and father's wife, I put the water in the coffee jug or whatever you call it, and put it on the coffee burner, put the coffee in the top. 15 minutes go by and no coffee DUR I never poured the water in the top part of the maker. So my two kids were sitting there laughing and the rest of the clan. Then they say how I had two jugs and one was to be icetea and one lemonaide. I put the scoops of the both in the same container and couldn't figure out why it was so dark/strong, until I went to make the lemonaid and knew I put the amount in the jug but nothing was there and then figured I messed up and put it all in one jug. Ok, I was laughing at that too, figure take everyones advice and laugh it off. So coffee mess up they are all laughing at, then the lemonaid/icetea mixup, then they go on to say that I slur my sentences and words and that I always switch my words around. I said no I don't always do that, then continued on and on and said examples and that half the time they do not understand me or that I make up a word that doesn't exist. So I said what is this pick apart mom/paula day? They continued and I went outside. Hurt, but saying I should brush it off that they probably didn't mean it all. Then my hubby says what is wrong, I tell him, as soon as I tell him my brother asks me if I have a sprinker. Then I say ya, the pinka or something like that is over there and he starts laughing and repeats what I said... my hubby said, don't make fun of her she is tired and I laughed.

So, once again, I was made fun of, I don't know if it is the medicines, just being tired, or what, but I wish it all did not happen.

Thanks for letting me vent, it was a not a good weekend and really hurt me.

[Clare.T]

I think some people in your family need their butts kicked very hard. It is very unkind and rude to mock and deride people. You do not have to take this unthinking hurtfulness and shouldn't. Get angry !

Other people can make coffee and drinks, prepare food and do a whole lot else not just on special occasions either, but all the time.

Take good care of yourself.

Clare

I forgot the spit in their eye bit - it takes less effort style_emoticons/<#EMO_DIR#>/wink.gif

[LoopyLoo]

Hi hellos,

Sounds like you had a very similar weekend to mine. I'm sorry your father et al were unsupportive & lacked understanding. I'm quickly finding out that it's a common problem. style_emoticons/<#EMO_DIR#>/sad.gif

Remember that you are number one & you need to look after yourself. style_emoticons/<#EMO_DIR#>/flowers.gif

I realised today that getting upset just makes my symptoms worse.

Try & take some time for you, it sounds like your hubby is a good guy.

Take care style_emoticons/<#EMO_DIR#>/hugbetter.gif

Pam

P.S. I would tell them that the house has had an attack of termites & needs to be fumigated. You won't see them for dust..... style_emoticons/<#EMO_DIR#>/rotfl.gif

[Joandublin]

Paula style_emoticons/<#EMO_DIR#>/hugbetter.gif

It sounds to me like its time to put them straight. How about sending them a letter? Use the Letter to Normals as a template but if I were you I would put my own twist into it. I would turn it into a 'pick apart my family' letter.... I would guilt trip them so much that they would be crawling on the floor the next time they saw me..... style_emoticons/<#EMO_DIR#>/hissy1.gif

How cruel and thoughtless of them all. And as for your Dad?... Well some words are just not permitted here on the forum style_emoticons/<#EMO_DIR#>/tantrum.gif

Paula, take a deep breath. Be strong but never, ever let them walk all over you like that again...


Much love
Joan style_emoticons/<#EMO_DIR#>/flowers.gif
style_emoticons/<#EMO_DIR#>/highfive.gif For your hubby by the way!

[pamsline]

Hi Paula((((((((((((((((((((((((((((((((((((HUG)))))) )))))))))))))))))))))))))))))))))))))))

I'm sorry you had such a bad weekend. Family get togethers sometimes really suck. style_emoticons/<#EMO_DIR#>/sad.gif My family is quite similar to yours. I love them all dearly BUT I wouldn't give them the time of day if we weren't related. Each and everyone of them has a weird little trip they are on. I can handle them one at a time. It's not quite as bad if only one or two people are laughing at you. It really sucks when you are feeling really bad. I don't blame you for going to bed. Your dad, well I would take him aside and give him an earfull.
Try to take some time for yourself Paula. Don't forget to rest. Your company will get over it.

Take care,
Pam style_emoticons/<#EMO_DIR#>/foryou.gif

[lazylegs]

Write each one a thank you note for coming. In it simply explain that since you obviously can't meet their expectations you will no longer be putting on these family affairs. You would be honored to be their guest if you would not be too much of an embarrassment to them.

When family comes to our house I tell them to feel free to get whatever they want since they know where everythings is by now. Any dinners are done at a restaurant with each family paying their own check. Everyone still gets to enjoy being together and I don't end up in bed for a week.

Take care,
Lazylegs

[confused1]

Dear Paula,

I do not like your family. They are shallow, cruel and petty. I can't understand why you continue to allow them into your home or into your life. They each and every one need somebody to "go upside their heads" as my Granny used to say.

Please pardon my bluntness, but obviously you are exhausted and undoubtedly making yourself sicker by catering to these cretins. And why on earth would you make coffee for them?????


Be kind to yourself and sleep plenty and get coffee just for you and boot the lot of them out of your house.

Hugs,
Sunny

[teabellyjules]

Hi Paula

Sending you lots of style_emoticons/<#EMO_DIR#>/hugbetter.gif . I think it is worse when it is members of your family that hurts you, I'm not sure if this is what is happeneing but there is a saying 'Familiarity breeds contempt' but that usually applies to people who are supposed to be friends. But sometimes family memebers can be doing that saying.

I don't think that these members of your family would like it at all if they were in your shoes and had to go through that weekend. I think you are very calm and handled it brilliantly, keep your chin up and decide that the coffee and lemonade making were a new invention that went really well style_emoticons/<#EMO_DIR#>/wink.gif

Love and lots of hugs
Jules
XXX

[goats]

I am not sure if I should put my two cents in here or not.but since I started I will finish.. you family is hurtful and mean. you should print this all off and give it to them perhaps they can't deal with your illness and this is they way.but I felt very upset for you reading this. you don't need the stress of all of it.it might be one thing to laugh a bit off. but not the way they where doing it. why didn't they get off their tuffs and help you. you shouldn't have to do all that when they are perfectly healthy. getting tired just makes us worse. oops I better stop before I offend you family...


large hugs for you............get alot of rest and come here to vent. we are your family to and care very much

[helloos]

HI everyone.

I have to say I laughed at some of your replies. I think the thing is that my family usually gets along. We are jokers to each other and always have a lot of fun together. So I know that if they knew how hurt I was they wouldn't want me to feel that way. The thing is that they do know about the Lupus, they have read about it, researched it, but they STILL DO NOT UNDERSTAND. As all of you, they see a person who looks ok and not sickly and probably forget about the illness or think I feel great. It is unfair that when my father comes he stays with us so everyone comes over to visit him here. I am in the most convenient place. Everyone lives about 45 minutes all around me. No one thinks, Paula is unwell, or not fair, or doesn't feel good.

As for all the making fun of, I really believe that they would do me no harm or want to make me feel bad. It is just that it all came down on me all at once. Everyone laughing at me, and pointing out my sentences and my words, my errors - I don't know why they would all do that. I don't know if it is the Lupus, or the meds, or what -so I can't say this is why I am doing it....my brain has something wrong with it.

Anyway, you are all right about everything you said. I should not be the one doing everything. They were very capable of doing things themselves. They always say "we'll help you" and then don't. Whether made to make me laugh, your thoughts of what to do were funny and I pictured myself doing them and that is what made me laugh.

Thanks for letting me vent.

[Douglas]

At least for this weekend, your family took the "fun" out of "dysfunctional".
I have to agree with the suggestion to write letters, though it does leave you open to more discourtesy.
I also must say that, as mentioned above, I don;t much like your family either. Perhaps a bunch of drunks could use their alcoholism for an excuse for such inexcusable behaviour (do they also kick cripples who fall sown?) but I find it very sad that you had to endure such ignorance.

[jude mack]

Hi Paula

I'm sorry your family hurt your feelings, I know fun is fun, but if you get hurt by it, maybe it's time to tell them so. My family jokes around allot too, but I usually get my sister before she gets me, since she is just as unwell as I am , the jokes don't hurt. I this week goes better for you.

Take Care
Jude style_emoticons/<#EMO_DIR#>/smile.gif

[barefut]

Oh Dear Paula,

There you were trying to be hostess to a house full, sounds like waiting on them hand and foot.........You should have told them, "Well, hey! if you don't like the way I make coffee, tea and lemonade for the lot of you, then why don't one of you get off your buns and make it yourself and give me a break!"

Whew. That felt good for me too.

Was it good for you? style_emoticons/<#EMO_DIR#>/laugh.gif

Have a better tomorrow style_emoticons/<#EMO_DIR#>/hugbetter.gif

Barefut style_emoticons/<#EMO_DIR#>/wub.gif

[flowergarden]

Paula, besides the fact that they shouldn't have decended upon you like that, perhaps one suggestion for next itme, if there is one, is to assign people jobs. "Sis, would you make the coffee, please?" "Brother, I need you to gather people up for dinner". "Dad, would you attend to the family for a bit, because I'm so exhausted I could drop". YOu might clue your husband in that you need a bit of backup (from the beginning) to help them understand.

The other thing you mentioned is your cognitive problems. That is relatively common with lupus. It was one of the first things I noticed in myself. It does need to be checked out, though. I pushed and pushed for several years. I had and EEG and MRI, nothing. Docs didn't believe me. Then I had neuropsychological testing and it showed some real deficits. I went to a neuropsychiatrist who did more extensive testing, and I now have a real neuropsych diagnosis. I have an excuse for what I do!

I have theopposite problem with my parents, and it's no fun, either. They think I shouldn't be allowed to do anything. style_emoticons/<#EMO_DIR#>/wacko.gif

[helloos]

You all have such great points. Thank you for the ideas. You are all so right.

I am going to try my best to tell my rhemo. I have an appointment this Friday with him that I was thinking of putting off for few weeks where I just started the DHEA I know he will say lets give a month and come back so seems like a waste to go all that way there for just a talk. I haven't decided if I will go or push off for a few weeks, but I hope I can get up the courage to talk to him about this. It just makes you feel stupid to say such things about yourself. Any good suggestions on how to bring it up? Maybe by saying, this is an embarrassing issue and not sure if maybe the meds are causing it or what and go from there?

Sue - I too had the MRI or was it CT Scan , cannot remember which one, but they were checking cause of numbness in head and it came out clean. I had an appointment with the neuro who did the muscle test and I mentioned briefly to her that I was having trouble with some words and sentences, she said nothing. I only went to her two times.

Thanks for all the help and responses.

You peeps are great !

[Fishaholic]

<div class='quotetop'>QUOTE(helloos @ Jun 21 2006, 01:58 PM) Quoted post</div><div class='quotemain'>

I am going to try my best to tell my rhemo. I have an appointment this Friday with him that I was thinking of putting off for few weeks where I just started the DHEA I know he will say lets give a month and come back so seems like a waste to go all that way there for just a talk. I haven't decided if I will go or push off for a few weeks, but I hope I can get up the courage to talk to him about this. It just makes you feel stupid to say such things about yourself. Any good suggestions on how to bring it up? [/b][/quote]


Hi Paula

I was having huge trouble mixing up my words, wandering in and out of rooms not knowing why, waking up not knowing where I was, not knowing what day of the week it was. I used to sit on the bed not getting dressed because I couldn't figure out if I needed to put on work clothes or casual! Strangely, my memory, focus and concentration was unaffected, which meant I was able to continue my work. But I had to do things like have a big wall calendar in every room in the house with the days ticked off so I could check what day it was.


Well, when I saw my neurologist, I finally admitted to the problems I was having. I found it really hard as I am an academic which just seemed to make it even more embarrassing. I just said to him "please don't laugh as this is really hard for me to admit to but...etc, etc, etc..."

I have temporal lobe epilepsy which is relatively well controlled. I still have seizures, but I could be sitting next to you and you wouldn't know unless I told you! I had been having more of them. It turned out that I was having far more than I thought. We've upped the meds, they have become far more infrequent and my problems have for the moment cleared up.

I was just wondering if you have been tested for minor epilepsy. Sometimes mine just characterize themselve as slight nausea, a muscle twitch or two, and my words coming out all wrong. Obviously I don't want to scare you and it is unlikely that you do, but it can sometimes be the cause of these sorts of symptoms, as it was for me.

[lisade]

Hi Paula, I am sorry you had such a rough weekend. People can be so cruel and most don't even realize it when they do it.

My suggestion is next time tell them to get a motel.

My thoughts are with you style_emoticons/<#EMO_DIR#>/foryou.gif

[helloos]

HI Fish.

Thanks for the advice. I have not been tested for seizures and don't quite have the symptoms you desribed. I will try my best to mention to the rhemo.

I did reschedule my appointment for tomorrow to mid July and they agreed that the doc would probably say give the DHEA a try and come back cause only on it for one week.

Thanks again.

Lisade.

Yes you are so right.

Motel sounds good to me. My father is going to stay with my brother today through Monday. YIPEE !!! A break for me and a weekend alone !!!!