family

[Rene]

My husband's neice Graduated Friday night. We really wanted to go and new about it for a few weeks. I really think alot of her and wanted to be there. But Friday I was way to sick and my husband pulled a muscle in his back this last week so we could not go. They live about 1hr and 45mins away so there was just no way we could go. Because of lupus I always try to think ahead so I mailed her gift Monday just in case we were unable to make it. This was a really nice gift. I worked on it for months..It was a large carry all bag filled with all kinds of neat cosmetic items and a 2006 pendant and all kinds of things.I thought this would be really neat because she will be going to college in the fall. Well on Friday my husband called and left a message on the answering machine telling his sister that we wouldn't be able to make it and why. He ask them to let us know if they got the gift and we haven't heard a word from them. I honestly think that they are mad! I called a couple of times in the last few weeks and the only question asked was if we were going to be there. I have come to the conclusion that some people just don't care or believe my illness can be as bad as i have tried to explain. I just don't understand!!Thanks for listening...........

[pauline1946]

you are 100% right no one understands what we go through.
would you have believed it before you got sick? I wouldnt
have.
I hope no one else has to suffer with this thing. it's never
just one thing, always 2 or 3, and who in h$!! wants
to have to stay out of the sun. isnt the sun suposed to
be healing.
maybe the next time they go for a drive one of them
will get a real good sunburn, leg cramps, headache from the sun
or an aeeack of IBS. I think that would be justice,and give
you a good laugh.
Try to ignore it as much as much as u can, it wont do any thing
but stress u out.
sorry its bothering u so much.

[peonyprincess]

I can totally relate to you and your situation. While I do not have the graduation problem, I have been in the situation where I have either chosen not to attend or not be able to attend family functions because of my illness. I normally get a tongue lashing, etc because I was not being friendly, etc to whomever, by not atteding. Well sorry...................I do not feel like getting into a car and riding for 1-2 hours only to be met with hostility because I didn't go to someone elses shindig, etc. I do not have time for negativity, I can do that fine all by myself. No, unfortuately, families just do not understand that our daily grind is much different from theirs. To be quite frank, I do not think alot of people care to understand. They are healthy, and if they can do something then why cannot everyone else. It is just crazy in my opinion. I do not know if we have become to busy in our own lives that this selfishness has occured or what, but it happens time and time again.

As far as the graduation, you stated that you would be unable to attend, so do not worry about it. As for them not acknowledging a gift that you sent, well, tht is just poor manners. Now, it is quite possible that maybe she is going to sit down and write thank yous at one time instead of hear and there, so not to miss someone. Next time you call, just point blank ask if they received the gift. Do not apologize to anyone because you are unable to attend. You do not owe anyone a 15 minute disertation about why you are not in attendance. They know you have lupus and it effects can leave you in bed, etc. You notified them and therfore you have done your job, do not feel guilty because you are unable to do whatever. You have a disease just like the other 3+ million Americans in this world. If they cannot comprehend that, then they are the abnormal ones.


Nancy

[lupy lulu]

Hi Rene,

I know exactly how you feel!!

I dont feel that i have any body apart from my husband who gives a s**t how i feel.
I dont hear from anyone unless i ring them .

When i was having my son i was in hospital for 3 weeks before he was born and nobody came to visit until the day he was born.
Sometimes i just feel like moving away somewhere that i dont no anybody so then i wouldnt feel disapointed by people.

Wow you have hit a nerve.

I think that the only thing that we can do is rise above it, if we no that we are doing our best then we carnt do anymore.
Unfortunatly you carnt change ignorant people.

Sending love and understanding... Lucy x

[helloos]

You are right. They do not understand.

However, your gift sounds very nice. I am sure that she appreciates it and it is up to her to call you to thank you. At that age, they need to be reminded. That is my experience with my niece that graduated.

The ball is in their court, so it is up to them to call you. You did a wonderful thing for her and did all you can do.

[pauline1946]

sounds like they all need a good sunburn to me.

[rwb200]

I can say from past experience no one completely understands what a person goes through and few even try.
I think most if not all here have at sometime had a similar experience.
As far as someone not calling when they get something or even sending an e-mail, note or what ever most never do this today.
At least most in my family never do.
We have fought this battle for almost 19 years sending stuff to people and asking them to call when they get it. Try calling and leaving a message telling them you just wanted to insure they got the gift and found the $100.00 bill you put inside it.
You will get called right away after they search for hours for the $100.00 bill and do not find it.
When they call and tell you they got the gift but could not find the money tell them you didn't send the money but you figured it would get a responce from them.
It may piss them off but who upset now. May as well turn it around.

[sue90x]

Hi
I've just posted on your other thread, and my response relates an awful lot to this one too,
your neice I'm sure will be thrilled with your gift-thats what I do for my nephews and neices for christmas and birthdays, they are always thrilled with the goodies inside the box or bag.
your neice is going away to college/university, yes/ shes going to take that bag and shes going to think of you when shes using the lush contents, not just once but everytime she goes in it,she is going to be mixing with new people, some who may have or have encountered lupus themselves, she could be your family's turnaround for you, students away from home spend a heck of a lot of their time talking, socializing etc, don't reproach yourself for what offered you no choice.Your illness, like I'd say 99% of illnesses are the same, some days are a complete no, no, families in general just do not understand, its heartbreaking, they 've watched you/us struggle through some of our worst times and each flare seems to get harder, like we're battle fatigued, obvious really, we don't get better to recover so how can we regain our strength for the next!?
I'd relax as much as possible and feel smug that you've come off winning!
Suexxx

[sue90x]

this is sort've along same similar line, my mother was a single parent from me being 8 yrs old I'm the youngest of 3 girls, (my mother was an only child) whenever her friends children became 'of age' working earning their own money, it didn't cancel out all the times over years gone by that shed struggled and bought a gift, but they(the children)now old enough to return that priviledge-providing educations over did she ever recieve a card or gift in return for all her struggles, did she ****, I'm at a similar time myself now, having, 13 nephews and neices some approaching leaving fulltime education my own daughter included, I simply don't have the financial or physical ability,to prolong this until the day I die, does anyone else have this problem?or know where I'm coming from?I have one child, some of them have 4 in one family, we're crippled with debt already my hubby is always needing to take time off work to be 'there' for me.
I would be total agreement if my sisters -in-laws friends etc stopped buying my daughter gifts and cards, she earns her own money, she always manages to buy for her friends but its just expected that family (she does for me and her dad) continue forever-I'm simply not a willing participate- some of them have kids of their own it'll never stop!
mini money rant over
Suexx

[Christine UK]

<span style="font-family:Arial"><span style="font-family:Arial"><span style="font-family:Comic Sans Ms"><span style="font-size:14pt;line-height:100%">
people dont understand,no matter how hard they try...unless you live with this you really dont have a clue....when we say we are tired they are tired too but its just not the same...
how can we get up and feel dreadful.....and 3 hours later feel we can climb a mountain...
We have lost part of my husbands family simpky becaus ethey just dont understand....isnt it sad....my nephews gfriends has MS god bless her she does suffer...BUT as i have been told...tut tut thank goodness you dont have what ****** has got...thank your lucky stars...as my nearly 15 year old would say...yea whatever !</span></span></span></span>

[sue90x]

One of my sisters friends has MS, and she has my upmost repect, but I get her and her illness rammed down my throat so ****** much I almost resent her not having APS SLE post CVA paralysis, but she soldiers on shes made of strong stuff, good for her I say , your daughter is right Christine its a fantastic phrase 'our young ones have adapted and said with such meaning- ''Whatever!''
they make me sick to the back teeth the lot of them, I've recently had a convo with my sister can you tell!!!!
Everyone hold hands, interlock arms or what ever each of us can manage and barircade the world that refuses to understand out!! United we stand all understanding each other, we're a force to be reckoned with really we are.We seriously outnumber MS thats whats laughable
take care comrades Suexx- I'm on my merry way to yet another hospital appointment -only two this week lucky eh?!

[Rene]

Thank you all for your replies!! I honestly didn't even want a Thank you! I just wanted someone to tell me that she received the gift. Sometimes packages get lost in the mail. I even insured it. Anyways,to date I haven't heard from them and frankly I just don't care!! I am starting to learn to get a little tough! Sometimes I think we have to with this disease! Friends I have to agree with you! I think having MS must be horrible!! I feel for every person who has it!!! BUt LUPUS IS DIBILITATING!!! Some days When I am walking down the hall of my house holding on to the walls so I want fall I can't help but think WHY >>WHY >>WHY in the world don't people on TV, RADIO,TALK SHOWS,COMMERCIALS,NEWSPAPERS,MAGAZINES ,ETC>>>>TALK MORE,SHOW MORE,EXPLAIN MORE ABOUT LUPUS!! I have seen just alittle on TV about it and it is almost like it is dismissed!!3 to five minutes here or there!! WOW! UNBELEIVABLE!!! IF only doctors/experts or Famous people>>ANYBODY who knows about Lupus or has seen someone suffer from it would tell the viewers or readers more than half a minute. Just maybe someone would get it!!!! This stuff is REAL and it is REAL HARD TO DEAL WITH!! When someone ask if we are coming to a family event and I say I will just have to wait and see how I feel. There is always a commit of some sort. Or I love the one .... well I hurt to and I work.Or I have that to.... If they had what I had they wouldn't be able to work..... Oh well,it felt good to yell alittle..... I feel better now!!!!! THANKS FOR LISTENING>>>>>> Wendy

[ceba]

I had to get on the bandwagon. As far as thank you notes, my sister and I were brought up to write them. I still do, she doesn't. Her son only writes them to people my sister needs to impress, and I am not one of those select few. I think lessons in gratitude start at home and he obviously doesn't have a role model in my sister. We can only control out own behavior. Wendy, you did the right thing by sending such a lovely gift. I am very thoughtful of people and will continue to be. If others don't appreciate that, shame on them. Occasionally I come across people that are so surprised I remembered an occasion and it makes their day. In this day and age, people are genuinely surprised by kindness because most of the people from where I live (N.Y.) are too self-involved.

Regarding the lack of understanding of lupus, I too am so frustrated with people that don't give a d*#n. My whole life I have been told I am too sensitive, and maybe I am, but I know when I have a friend that is sick or going through a major problem, I call and check-in, I remember when they went for a test or doctor appt. and call to see how it went. I NEVER get that same courtesy. This disease makes you realize who your true supporters are. Sometimes it isn't even your own family. My sister has diabetes and she is a mom of one 6 year old. I don't have kids. If I have heard it once I have heard it 1000 times from my mother how tired my sister is. I don't doubt that being a mom is tiring or that diabetes doesn't cause fatigue, but whenever I say how my fatigue is really bad, I hear that my sister is really stressed and tired too. It is never about my problem, someone is always worse off. I too feel like running away from these people in my life. My partner is the only one who sees on a daily basis what I go through. On the outside I guess I look fine. I think because I can still walk, talk, function for the most part, people don't see a disability. I feel like people look at me like I have 10 heads when I say I have yet another doctor appt. or a test. People that come from families where they have never experienced illness are very lucky and have no idea what it is like. I have been like this since I was 5 years old (I am now almost 35) with one thing or another. I have had a doctor in practically every specialty, I have been scanned, x-rayed, MRI'd, biopsied, poked and prodded from all sides and scoped from both ends, been medicated until I was a zombie, fallen asleep in public places from fatigue, given enough blood and peed in enough cups to sink a battleship, and I didn't enjoy any of it! Do people think you would put yourself through this if there was nothing wrong?