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Do Sibs Even Matter In The Whole Sclero Thing?


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#1 Patty

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Posted 17 December 2006 - 05:52 AM

I just got off the phone with my sister. Well to be honest she hung up on me because I was yelling at her for not caring that I am sick. If I was one of the members of the club she goes to, she would be all over holding fund raising parties for sclero etc but its just me her sister and well I guess I dont matter. I asked her if she even knew what the name of my illness was and her answer to me was" Well no Pat because you have always been sick and I think you just cry wolf" I told her I was going to die from this... I know I know I went a bit far but that didn't even get her attention. Why do I care so much what my sister thinks? Why do I let her upset me that I can't count on her? I guess I have some crazy thought in my head that when a family member gets ill, the others rally around to help and learn. I must have watched one too many lifetime movies I guess. My other sister didn't pay attention to this untill she stayed with me for a month and saw how things really were for me. I am not looking for pity from my family, just a little something that they understand and that maybe just maybe IF this gets too bad, they will be here to put a smile on my face when I need it. Or to take the baby for a few hours so I can get a nap in. I know that I should not be mad at her, I should let it go but its hard. I think that my whole family needs to know about this because it could happen to them or their children. If I have it, they could get it too.

Hugs,
Patty
Hugs,
Patty

If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#2 Sheryl

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Posted 17 December 2006 - 08:28 AM

Ohh! Patty,
We can't hope for others to understand what we go thru on any given day. If they ask how we are, we just say we are doing ok, or pretty good. Or, this is a good week. Most people don't want to know if you are having a bad day. That is why this group is so awesome. We each already know what the others are going thru, or feeling. I know it would be hard for you but you need to call your sister back and let her know you love her and sometimes you just have a really hard time dealing with the things going on in your life. And we are supose to be able to go to our families with our troubles. Yet, sometimes it is much easier to tell your closest friends more of how you feel than to family. Tell her you didn't mean to have her be your bashing board. Sometimes you just need to vent. See if she will mind if you vent to her on occasion. My sister knows I need to vent at times as she did in the past. We take turns, and we let each other know we need to vent. We get it off our chests and go one. You don't need to let this situation fester. Be strong and ask for her forgiveness. Then, you can always say, can I depend on you once in awhile for a bit of help? Usually, it is how we go about things that give us the greatest benefit. I hope you get through this. My thoughts and inspiration are being sent to you. Sheryl
Strength and Warmth,
Sheryl

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#3 Patty

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Posted 17 December 2006 - 11:17 AM

Oh sheryl you missed thre whole point of my post! I do not want my sister to forgive me.. I need to forgive her but I won't. She gives and gives to strangers, yet not to her own family. She hurt me mnot the other way around! Shes cooking holiday dinner for drunks, and never even asked me what I was doing and how I felt! No she needs to beg for my forgiveness.
Hugs,
Patty

If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#4 Sweet

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Posted 17 December 2006 - 11:43 AM

Hi Patty,

I know how frustrating that is. I think we all have someone that touches our life that isn't the best support person that we wish they were! What I've learned is that I can't change other people, I can only change the way I react to them. I can let them get to me, which I've learned only hurts me because they are oblivious! Or, I can just let it pass, knowing they love me, but have a hard time truly understanding what I’m going through.

Sounds like this might be one of those times you need to make lemonade out of those lemons!

Hang in there my friend,!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#5 Heidi

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Posted 17 December 2006 - 01:58 PM

Hi Patty,

I am so sorry to hear about your sister's attitude toward you and your illness. Unfortunately, I think a lot of loved ones often cope with our illness by denial. It is painful for us as it often feels as if they don't care about us or understand what we are going through. I think when we have a loved one who reacts like this, we just have to not even look for support from them anymore and turn to others that we know can provide it. I am sorry you are experiencing this frustration! I am sending you a big virtual hug!

Warm wishes,
Heidi

#6 Sherion

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Posted 17 December 2006 - 04:29 PM

Patti,
I just wanted to let you know that you are not alone!! When I told my mother and my sister I got almost no response. My sister started talking about her arthritis. When I mentioned that this could be life threatening, my mother said "well, we all die from something". That made me feel real good!! So much for caring families!!!!!

Sherion

#7 janey

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Posted 17 December 2006 - 04:55 PM

Dear Patty,
I have a sister very similar to yours. She feeds the poor, leads the singles group at her church and lives with our elderly aunt, caring for her daily. But when we talk, it's all about her. Yes, she does ask "How are you?" but the first time I actually went off telling her how I was really doing, she interrupted me within the first 2 minutes saying "Hey, I got a new job!" From that point on, when she asks "How are you?" I just say "fine". Which is all she wants to hear anyway. I've learned to accept that and it doesn't bother me anymore. I no longer get upset when she calls to talk about herself because I know what not to expect. She treats all of her sibleys, mother and daughter the same way. She even has a 1.5 year old granddaughter within a 5 hours drive and she "just can't find the time to go see her." What person in her right mind would not make the time to meet her own grandaughter?

I'm very thankful for my other sister, my brother, my mother, my sister-in-law, a couple of close friends, all my friends here at ISN, and most of all, my wonderful husband. Each of these people offer comfort, in different ways, but it's always there when I really need it. So the other sister is no longer used for comfort or much of anything else for that matter. Sometimes we just have to accept people for what they are or aren't and move on. She'll always be my sister, but I've accepted the fact that she doesn't want to know and I've moved on. It's her loss, not mine. It's a long and hard road emotionally to get to this point, but sometimes we just need to move past it. You need to do what is best for you.

Lots of big hugs to you from your ISN family, and to you also Sherion. I'm sure those words were hard to hear coming from your mother.

Big Hugs,
Janey

#8 Shelley Ensz

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Posted 18 December 2006 - 04:24 AM

Hi Patty,

In my (probably warped!) way of thinking, neither you nor your sister "owe" each other an apology.

I think where most of us make a wrong turn with chronic illness is expecting that our family or friends will always react in a caring or supportive manner. That they will rally 'round and be there for us.

Whereas, reality is that they have their own lives and their own troubles. Most people really are "wrapped up in their own bubble gum" -- just as most of us are before and (especially) after we got sick ourselves.

Your sister may already be maxed out for what she can do. Odds are, she simply cannot emotionally cope with anymore than she already has on her plate, and needs her own form of care giving when she comes up for air.

Care giving is a difficult, demanding, stressful and largely unrewarding role which many people dread and are not prepared for. To just assume that family members or friends are ready to leap into our loving arms (or even be basically civil or understanding) to nurture and care for us when we are ailing is a surefire set up for disaster.

If relationships were difficult or strained prior to the onset of illness, the additional stress can fracture or destroy them. That's why many of us undertake counseling when we are first diagnosed, to help prevent situations like that. You may have been fed up with your sister long ago and this simply presents the opportunity you've always been waiting for to tell her a thing or two. By using the illness as the leverage for it, everything gets laid at the feet of scleroderma, and distances us from our responsibility in the matter.

All I can say is that in my opinion, it is simply not worth it to destroy any relationship only over illness; that only adds to our stress, which makes us sicker. And it is much better in the long run for us to accept full responsibility for how we act and react in any relationship. Just being ill does not give us the right to treat others with disrespect. To my way of thinking, it certainly wouldn't ever justify yelling at anyone since nothing is ever resolved in that manner.

In my opinion (and keep in mind I may be wrong, I often am, and I'm not a counselor of any sort!) your sister doesn't owe you an apology, unless you want to demand an apology from everyone who is heartless or misunderstanding when it comes to dealing with chronic illness -- which would be enough people to populate at least 3/4 of the world (if not a lot more).

If everyone has to live up to our expectations, our journey with illness will end up being sad and bitter, instead of enlightening and joyful.

Yes, I said joyful! The journey can help us grow into being better and more compassionate, if we let it. Or it can help us destroy everything in our path. The choice is entirely up to us. In those moments when we are looking only at what others are not giving us, instead of at what we can give others, we are being selfish and lacking in compassion.

Illness does not give us the right to demand things from others, to place expectations upon them, or to have them finally shape up to how we've always wished they would be. It doesn't give us the right to lose our temper, to ruin relationships, nor does it give us an excuse to do so.

When we become ill, we need to be expanding our base of support, and not demolishing it. That can require overlooking people who are unskilled or unprepared or unwilling to act as our caregivers right now. "Love 'em from a distance" is a good way to think about it.

We don't ever need to stop loving people, even when interacting with them further isn't a good idea for them, or for us. Holding anger in our heart against people only adds stress, for which we pay the price of worsening our illness.

Besides, if you've always known your sister's strong point wasn't compassion for her other close family members, why did you look to her for that quality? Perhaps her strength for you will be in distracting you from illness. Perhaps she can be the person you can be around without ever having worry of the conversation turning to your illness and symptoms.

Sympathy and understanding are nice and certainly have their place in chronic illness. We all wish we had more of that! But it is also nice to interact with people who don't primarily see us as sick, who treat us as just being normal, and who focus on things like our hobbies or even who distract us with their own interests and stories.

Your sister will probably not be a babysitter when you need it. So perhaps you need to look up the options for home health care if your condition worsens. Or get a list of babysitters you can afford, or other friends who can help in exchange for something you can do for them; illness doesn't absolve us of the tit-for-tat arrangements, even if all we can give at the moment is a thank-you card.

But your sister just might be the perfect person to go to the movies with, or the one who will update you on all the family news. Distraction in itself helps reduce pain levels...provided we focus our energies on positive distractions, that is.

Sometimes we have all reacted in ways we wish we hadn't, after we calm down and have a chance to think them through. If we were temperamental before we became ill, we are likely to be even worse when afflicted with pain and fatigue. But it is up to us to learn how to gracefully cope with the symptoms, and it is not up to others to accommodate us by forgiving our lapses.

So in my (probably warped) way of thinking, neither you nor your sister "owe" each other an apology. I'd say you have a pretty even score right now. So the question is, who would gain most by apologizing -- you, or your sister?

I think you would be the winner, in every way. It would show that you are a bigger person, and it would let more joy infiltrate your heart. And if somehow down the road she comes to your rescue some day, you won't feel quite as guilty since you are not still harboring hard feelings about her.

But of course, do whatever you want, whenever you want! It's even perfectly okay to seek and hold a grudge, if you think that is the best way to relieve stress and add joy to your life at the moment, since relieving stress and adding joy are terrific painkillers, just in themselves.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#9 Elehos

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Posted 18 December 2006 - 09:39 AM

Hi Patty,

I think Shelley summed it up well, and it took me a long time to realize that "How are you?" is usually an extended way of saying "hello." The only time that I'm concerned with someone understanding what's going these days on is when I'm at the doctor--they have to know symptoms, but I've learned to deal with most of this alone. My husband and son have the biggest hearts in the world, they're both incredibly compassionate people, but don't know from experience what my body is doing, and I hope it never becomes their experience! I also don't want to talk about being ill all the time, and when things are at least bearable to smile, joke around, and let them know that there's still far more to me than being sick.

There are some that can only show compassion at an arm's length, and want to feel good about themselves by doing charity work, but that's the best they can do, sadly. Personally, I'd rather make a real impact on only one life instead of doing a head count at a charity. It's frustrating, but there are times that you need to back off from talking to certain people about personal things--even family--or you'll end up pulling out your hair. I hope that you have peace of mind soon enough!

Warmest wishes and a hug to you,
Elehos

#10 Shelley Ensz

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Posted 18 December 2006 - 10:02 AM

Which explains why most of us only have a few shreds of hair left, right?

Personally, I think adjusting to the symptoms and illness is easy, compared to adjusting to all the crummy psychological aspects of it.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#11 Elehos

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Posted 18 December 2006 - 12:46 PM

"Which explains why most of us only have a few shreds of hair left, right?"

Hi Shelley,

I was going to make a crack about that--that we need all the hair we can get these days! Thanks for making it for us!

Hugs to you too!
Elehos

#12 Shelley Ensz

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Posted 21 December 2006 - 06:13 AM

Hi Patty,

I want to apologize for my prior message in this thread. I severely neglected to say that I feel terrible for you and for the hurtfulness of your sister's response.

Nobody deserves such a lack of compassion or understanding, which you got doubly whammy from both your sister and from me, and it is all the more devastating when dealing with something like scleroderma.

I really can't say or even speculate as to how anything should be handled with your sister. All I can say is that I do feel your pain, I have been there/done that myself, and there is no easy way through the situation. I am sorry for adding more hurt to the pile by going off on a tangent and overlooking the most important aspect which is that I feel your hurt and I wish I could make things better.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#13 Patty

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Posted 21 December 2006 - 06:52 AM

Thanks Shelley This means a lot to me that other have been here and understand how someone can hurt us with words and ignorance for our illness. I am not dwelling on having a MCTD, but it is who I now am. Like it or not, I have my good days and my bad days. I now own MCTD and well it stinks but I am learning and I hope growing through all this. No need to be sorry for yout post. I guess its where you were at , at the moment and needed to get that out. Its all good.

Hugs,
Patty
Hugs,
Patty

If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#14 Shelley Ensz

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Posted 21 December 2006 - 07:20 AM

Thank you for being so gracious and understanding, Patty. I appreciate it.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#15 janet905

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Posted 21 December 2006 - 09:26 PM

hi patty,
I can empathize with you. I am an upbeat person 90% of the time, but when I have a bad day or need a friendly shoulder to lean on, it often isn't there. I have always been surprised by whom is the least sympathetic. my significant other ( I'm sorry to say) is the least supportive. he is not in denial, is very caring and sympathetic with others who have health problems, he just doesn't want to hear about mine. I've only been diagnosed with scleroderma for a year, so physically and mentally I am still adjusting to these new pains and limitations. I probably focus on all this too much and probably forget that people have their own problems ( that they think are bigger than mine). shelley is probably right about that. sometimes the truth is painful. doesn't mean we don't understand though. it's also a shame that even our doctors can't understand how much pain goes along with this disease (unless they have sclero or related disease). what is the answer? I don't know. I have a lot of anger and sadness over this topic. at times I have said I wish I could have chosen my disease and would have picked one that is more deserving of admiration for those who battle it every day. but like shelley and elehos , I have learned that this isn't going to happen. don't get me wrong. it isn't sympathy that I'm after. it is just a little understanding and maybe admiration for my 12 hour work days despite the exhaustion and pain. it wears down your mental strength to know you are often alone. I know people are often thinking things like "it's not like she has cancer or something". I could go on and on about this topic! I know I haven't given you any helpful advice on what to do. hope you can work things out with your clueless sister. we all have one or two. come to this site if you need to vent. it helps.
janet

#16 ElizaJ

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Posted 26 December 2006 - 04:24 PM

Hi Patty,

I am new to this still but can relate. It was not a sibling but my own mohter that was impatient, uncaring, and not hearing. It broke my heart when she said "Take the medicine and it will go away". That was about the scleroderma. When I told her about the syringomyelia - well I might as well have been talking to the wall.

So, I just dont talk to her about any of it any more. It is easier to carry the burden than to be hurt continuously. I am not saying that you should do the same, I am just saying it is my way of dealing with this problem. It still hurts but I dont know what else to do about it.

I know I care about all of us and how we feel. I also know that I cannot change my mom's way of thinking so I dont try anymore. I just roll with the punches when she is here.

Bless you.

ElizaJ

#17 americanmike

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Posted 29 December 2006 - 07:01 PM

Hi patty I'm a little late.

Sorry about your painful dust up with your sis. Everybody had alot to say, and most of it is good advice.

I just wanted to say... You're right and she's wrong. When someone is down, you don't kick them... you pick them up. She is 100% wrong and selfish and failing one of life's tests. The bit about her not visiting her granddaughter, and doing all this "charity work" makes me a bit suspicious about her center of gravity. It perhaps is a bit skewed towards "self"??

You aren't gonna change her, that much is for sure. Sorry it hurts!

Although it will take time...Try to forgive it will help your heart!

Michael in Florda

#18 Patty

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Posted 30 December 2006 - 03:15 AM

Thanks Mike!

You are 100% right on about her. It is and always will be "self" when it comes to her. I can not change her, but I can change how I deal with her.

I should have posted a followup on this. She sent her husband down with a fruit basket. I know she didn't buy it for me, it was a re gift, but still she thought of me and I am taking that as the white flag. I tried to call her to thank her but so far so return call. As for right now, I am trying to focus on getting healthy and not on holding a grudge. I have to move forward to get better. I need to embrace my illness and learn to love the " new me" If I may steal a 12 step saying. " one day at a time" Ahhhh some times its one hour at a time but its all good!

Have a wonderful new year!

Hugs,
Patty
Hugs,
Patty

If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#19 emmie

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Posted 30 December 2006 - 05:15 PM

Hi Patty,

A very nice cardio RN explained the nuclear stress test I was about to undertake to me last week. As she looked at my papers she noticed MCTD and inquired about sclero. She shared that her sister had it. I was surprised--you don't run into this too often, right? I asked if she had limited or diffuse. Ready.....the RN sister didn't know! I asked how she was doing, did she have much skin or internal organ involvement. Well, she thought she was doing pretty good. Awwww, I felt so bad for both of these sisters......

Later, I heard the same RN sister talking with the cardio doctor about this little chronic cough she was evidently having. She felt it was probably some type of an allergic asthma and she was just so sick of having to tell people that she didn't have a cold.

Don't get me wrong, I understand that can be annoying in her position of dealing with people all day in her position. However, I then think of her lack of knowledge of her sister's chronic condition and what she might be dealing with on a day to day basis.....and her RN sister has NOT a CLUE.

So here's a little tip I've read twice in the last 2 days in 2 different magazines. (i can only read magazine articles. The encephalopathy has robbed me of the ability to concentrate or follow story lines. Just trying to educate...not looking for pity. Maybe this is what we need to do with those around us. I don't know...just musing here.)

Anyway, each day write down 3 things that were good about the day or that we were grateful for or happy with. That's it. No big deal. Just keep doing it day after day. It's supposed to make a difference in our outlooks as in get them more positive and that in turn has a positive effect on our health and our perception of pain, etc. Easy enough. I think I can try it!

xoxo emmie