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vanfran24

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 #1 
Hello, 
it's been a few months since my last post and I'm doing okay.  My body has started to get used to it. This past Tuesday was the 3 month mark since I got sick and had to go back on dialysis because of kidney failure.  My significant other wasn't very reliable when it came to my health before all this, but he's been my rock since then.  My family on the other hand is another story.  I'm doing my best to stay positive.  I know that in my current condition, my next major flare could kill me - but I've remained optimistic and resolved to live each day to the best of my ability.  And then I think of them, and the fact that no one but my mom called while I was in the hospital.  And how I've been on dialysis for 3 months now and that none of my family calls to check on me or see how I'm doing.  The few times I've actually had to ask for help in the last few months it was because I needed an alternate ride to dialysis or the doctors while the hubby's car wasn't working.  They would reply in ways that made it obvious they didn't want to say yes. Like not answering or calling me back for hours and sometimes days.  Or sighing heavily before replying.  I've been told before that I owe them for taking care of me and driving me to the hospital all these years. I have always been there for my family.  I was basically the nanny for my oldest niece for 5 years because my sister was a single mother and needed help.  But when something important happens, I'm the last to know. The only time she calls is when she needs something, like a babysitter or help buying something for the kids.  When I asked my brother if I could stay at his place when I go see my specialist 3 hours away because his house is near the hospital, my sister told me I shouldn't have done that because I would be a burden.  I have a 22 yr old cousin that speaks to me disrespectfully because she can work full time and can drive(I don't have a license due to being too sick to drive - plus there's uber now) - so somehow that makes her better than me.  She is also of the opinion that I'm faking it half the time and should try not taking my medication, and that I should quit trying to get my degree, and shouldn't have kids - because I'm always going to be sick.  My other cousin I'm somewhat close to - but she also hasn't bothered to call, text or offered any sort of support since I got sick again.  She's been pregnant and had her baby yesterday - I didn't get a phone call that the baby was born.  Did I mention that her husband is "supposed" to be my best friend of 15 years.  I can't even really talk to my mom about things because my health issues are "too much" for her to handle these days.  The only one I really have these days is my significant other.  Most of my so called friends abandoned me long ago because I could no longer go out and kept cancelling plans.  The only support I get from them is when I'm upset enough to actually post something on facebook.  Some of them I stopped talking to because I was tired of people constantly looking at me with pity. But my family not being there for me, for seeing me as a burden to them because I'm sick AGAIN - is what's breaking me. I can handle being sick and almost dying and all that, but not being supported by the ones I love most - that sort of loneliness is killing me inside.  

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Mr. Bun

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 #2 
Hey VanFran,

I certainly know all about losing "friends".  I live alone and no one ever comes here aside from my sister and one brother (who is very sick too btw).  The last time I spoke to my "best" friend.....she asked me to really tell her what was wrong with me.  Most of the time i keep things to myself....don't want to "burden" others with my whining. But...she insisted.....so I told her.......and haven't heard from her since.  maybe 7-8 months ago?  I don't remember how long.  

I am blessed with a very caring sister......2 caring brothers....and a sister-in-law that keep tabs on me.  and I recently re-connected with an old friend.....who has far more serious issues than I have.  So am thankful for her.  My son pops off a text every now & then.  It's cool.

Don't have a significant other.....and have decided it's gonna stay that way.  seems I am the kiss of death for relationships...lol....so...I have retired that idea for good.

Listen.......you gotta let people go.  Does it hurt?  yep.  But it's better than bashing your head against the wall, wishing/hoping/praying..... for them to care as you want them to care. They kinda have to want to do that on their own.  

This place helps.......a lot.  I'm sorry.  I can't take your hurt away......it's all I can do to try to erase my own!  I'm glad your rock is there for you.

Up late & caught your post.  Nice to see you again,

Bun




Mr. Bun

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 #3 
side note......

There were 8 children in my family.  My brother died in January, so that leaves 7 of us.  Two I will probably never see again (with good reason) one I get emails from, but he is seriously on the endangered siblings list.

So......that leaves three that have stuck around.  and I am very grateful for them.

xox
vanfran24

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 #4 
Bun,
Thank you for your words. It helps to know that I'm not the only one that's been left behind by people they love.  Somehow knowing that I'm not the only one living this lonely life, makes me feel less alone - I hope that makes sense to you.  I know that I need to let them go.  I have 3 siblings - my sister lives in my city, one brother 3 hours away and the  other in another state.  The brother 3 hours away works too much so I don't blame him for not calling too often, plus he's the one that gave me a kidney the first time.  My other brother that lives in another state, texts once or twice a month to see how I'm doing - He graduated high school when I was 10 so we were never that close - but he still calls me more than my sister who lives 20 minutes away from me.  I think the hardest part for me is not seeing my 2 nieces on a regular basis.  The older one is 14 and doesn't need me much anymore. Her sister is 8 and I'm her favorite person in the world.  I don't have any kids of my own but having these 2 girls in my life has always one of the things keeping me going. My sister seems to have replaced me with one of my cousins these days.  The one that looks at me and my illness like I'm not worth anything.  I took care of this girl when she was little, walked her and her sister to and from school on a daily basis, took care of them when their dad had to go out of town for work - something she seems to have forgotten.  I could ignore her if she didn't make remarks about me around my nieces and try to influence them against me.  My significant other/boyfriend refuses to go to any of my family functions because he's afraid of what he might say or do to my family for the way they treat.  We live in Sacramento and have actually been making plans to move further north, to like Redding or something because it's getting too expensive to live where we are and also to get away from my family.  It's getting too hard to be around them  - Almost every time I see them I come home feeling angry and upset.  Sad thing is that it's always been this way.  They ignore me or treat me like an invalid when I'm going through the bad stuff, And when I'm having a good spell they forget that I'm sick and ask me do help them with all kinds of things that usually involve the kids so they know I'll say yes.  They even criticize and make of how long it takes me to complete a task, or that I have to ask for help sometimes because I can't open a jar one of my pill bottles.  Then there's my stepdad, who I can't say anything bad about without everyone turning about me.  Our car got totaled in a recent storm and I had to ask for rides during the 2 weeks we had to wait for insurance to go through so we could get a new car.  One of those was because i was having surgery to get a dialysis graft put in my leg.  When he came to pick me up, he wouldn't even get out of the care to help me climb into his SUV, when it was obvious by the fact that the nurse brought me out in a wheelchair, that I couldn't walk very well.  He eventually did get out to help me because the nurse asked him "aren't you going to help your daughter".  None of my family know about the incident because I'd end up as the bad guy for stirring up drama.  I would vent to my dad in Southern Ca, but he would get into dad mode on everyone and then it's my fault again.

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Cakelady

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 #5 
Bun you always have us
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Mr. Bun

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 #6 
For which I am so, so humbled and grateful.

xoxoxoxoxox


CBK

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 #7 
I feel your story.. im the oldest of 3 and besides lupus ive alwayd been healthy and never in the need of anything. Besides my husband i too feel like my siblings do not check on me as often as i would like. Nor do they really put in the effort to even ask. Its like um not sick at all. Yhe only time they know anything is if i offfer information.even my mother use to.make comments about me blaming symptoms of lupus. Like im blaiming lupus for not having enough energy when i should just eat this or that. I recently gave birth and had to ask my family to help with my newborns care on the weekends when hubby went to work because i was havong a flare. This was the first time they saw the extent of my condition yet i dont get much calls


I try to think, "they love me" but it does not always cure the feeling of loneliness from family
taffylinden

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 #8 

I'm so glad you posted. I'd forgotten your username but have been wondering what happened to you. It was the last line of your first post on this thread that brought tears to my eyes. I've read both posts three times now. I'm struck how generous you are in giving your brothers a free pass. You bend over backwards to excuse their infrequent contact. And the brother who donated a kidney said he loves you in the most powerful way possible: by giving you a part of himself.  The other thing that strikes me is how hard you've worked all these years to earn the love of your sister and cousins and, I think, your mom.  You've got some warped family dynamic that has caused these people to not only take you for granted but to turn on you. There's no way of telling what that dynamic is or WHY it is, and you certainly can't fix it, not all by yourself.

Is there some way to reach closure with these relatives? I know you don't want to tick them off, so you'd have to ask yourself: would it be better to have them angry at me because they think I'm a slacker and a loser, or would it be better to have them angry because I finally stood up for myself, stated my case, and asked for what I want and deserve?

I'm so happy you have your S.O. in your corner!

As for friends, try not to judge too harshly. In the daily chaos of living, people get caught up in their jobs, their commutes, they're kids. They don't think to call. I learned this the hard way

But you DO have us! And if you take a look at Cake's signature line, you'll see you have family after all. :)

Cakelady

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 #9 
I was feeling this way yesterday
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seadancer1

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 #10 
You find out who your real friends are when you've been widowed! After the funeral, some of your friends visits suddenly cease...it seems that your new status as a single woman is threatening to them, or else they are reminded that it could also happen to them....either way, for their peace of mind it's best if they don't visit...so they stay away!
taffylinden

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 #11 
 People unfairly put widows in a special saintly category. At first they don't invite widowed friends to gatherings because they envision the widow still weeping and keeping vigil--or fret she'd make everyone sad. Then they get out of the habit, circles close up again...

I think this happens more with widows. Everyone sees widowers as helpless and has them over for dinner, etc., because they envision them starving to death without a wife to cook for them. Unfair, ridiculous, hurtful, but unthinking. 

I'm sorry you're having to deal with this on top of lupus.

Cake, I've been thinking of you. No matter how alone you feel, there are people on your side, even if we can't be by your side.
seadancer1

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 #12 
Thanks Taffy but its been twenty years since my hubby died...I guess it still gets to me that these friends decided, for what ever reason to loose touch, and talking to other widows, they experienced the same with a lot of their friends...and yes widowers are treated differently. Thank goodness I have a good partner now as at seventy four, the friends I had have moved away to be closer to family, or have passed away, my children live in different states.....one lives in Japan...and my two brothers are now deceased, so my partner is everything to me now. I am not complaining, this is life unfortunately. This disease is so misunderstood by some people, they think that because it is not obvious, then it most likely is all in your head, and you get so tired of explaining what it is.
Cakelady

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 #13 
Seadancer the same thing happened to my grandmother when my grandfather died. It was the saddest thing. Now she's 90 and her best friend moved away but they still got together every Satur day for church. Now her friend can't drive and her friend Dene doesn't want to get out of bed anymore. Her son is flying in on Thursday hopefully he can snap him out of it
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seadancer1

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 #14 
Yes it is very sad, and hurtfull....just when you need the support of friends, suddenly they treat you as if you have some infectious disease! And in a way you can't blame them because one or two husbands let you know that they are there if you need something you may be missing now that you are alone and probably lonely!
Cakelady

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 #15 
My grandmother said something the other day and it's kinda bothered me. We all want to live long lives but the longer you live the lonelier you can become. You bury your spouse, your parents your in laws, your friends and in my grandmother's case she also buried a child . So she said maybe living that long isn't really the greatest thing.

My grandmother is 90 she walks everyday and goes to excerise class 2-3 times a week. She's also a breast cancer survivor. She is one tough lady

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The bond that links our true family is not one of blood, but one of respect and joy in each other's life
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