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Sjogrens Topics => Living Life In Spite of Sjogren's => Topic started by: 12lovehim on August 11, 2011, 10:23:17 PM

Title: Can I vent about my successful sister, family today?
Post by: 12lovehim on August 11, 2011, 10:23:17 PM
Hi my faithful group... my lone voices in the world of 0s and 1s...
                 So this last week I have freaked out my entire family with waking up to have my right side completely covered in bruises. It scared everyone, even the doc, (just finished a round of testing).. But according to one of my sons (only child not living at home) who is in school 3 hrs away and works part time for my sister to help pay for school....

My sister told him this week " I've decided don't listen to your mother anymore, she is not sick.. she has been going "through" something off and on for the last 5 years.. tell her get over it already.. she already cried wolf.."..........

OK... I hate SSJ, I hate all this... My entire family has been super successful, hardworking people and I just knew if ever it became true I was really sick.. I would be out.. I would be the looser Aunt, Sister, Daughter.. In our family you work after chemo treatments, do home births and go to work the next day.. I have been running from this truth..

And well we are a family of Bi-vocational ministers too.. So this whole thing is like a double failure.. And no matter how great my hubby is "acting" I am watching the wheels turn, he is resigning from everything.. Not because he can't handle it.. but because of embarrassment.. He wont admit it.. but now that I know what others are saying behind our backs I now see that most don't believe what we have been teaching/training anyway.. I feel so bad for him. It breaks my heart to see my hubby back away from stuff he loves.

I have watched how everyone has pulled away from me.. and in my humiliation of weakness I let them all.. instead of calling all these so called family and friends to the carpet and saying... Oh now that I need YOU not the other way around.. you can't be bothered...

My sister was my best friend.. I didn't tell my son about my bout this week... I didn't want to stress him.. but his brothers did.. now he is mad at his Aunt (that he must keep working for if he wants to pay for this next semester at school..)
And so I am trying to find the duck feathers with my sisters statement so he is happy being her "mannie"..  I don't want him to feel like he must do something stupid out of a stupid principle (like quit a job cuz someone was mean to mom.. and maybe have to quit school for a semester.. besides my house is way to full ;) )

OK thanks to everyone for allowing me to vent.. This has been a soul searching week for me.. Guess we all must have the moment when the reality of our limitations hit us and it's not going away... Sorry to be the super venter this week..

Blessings.. keri
Title: Re: Can I vent about my successful sister, family today?
Post by: Katybarstool on August 12, 2011, 12:20:12 AM

You have a lot on your plate just now, and the guilt feelings about your son's position must seem like the last straw. You sound to me like superwoman, rather than supter venter! You know we are here for you, vent away whenever you need to. We are an unconditional family.

It must be awful realizing that people have humoured you in the past about your beliefs - they are the dishonest, unaccepting ones.

Will pray for you and yours.

Title: Re: Can I vent about my successful sister, family today?
Post by: Meld256 on August 12, 2011, 04:05:10 AM
Dear Keri,

Vent away, my dear! 

You do not sound like a whiner, or loser, or anything of that sort. Being a Mom, wife and ex-military person I can bet that!  You've toughed through a lot for a long, long time.  I think one of the hardest parts of this disease is getting others (even our close loved ones) to try to understand that we're not lazy, crazy, stupid, there's no "unconfessed sin" in our lives...we are ill!!

When they don't understand, it can hurt us deeply.  Some people have a very hard time seeing us go from a strong person who does everything for others to a different person. I think it frightens them. Secretly they think "if that can happen to HER, it could happen to me."
As hard as it is, please try not to take your sister's words to heart too much.  She does not understand your battle.  Hopefully, in time she will.  But you have so much going on now with family staying with you, etc. it must be overwhelming to you.

We are your friends and unconditional family, just as Kathy wrote so well.  We are here for you...we care.   I'm sorry for the hurt you're feeling, but glad to know you can come here anytime at all for any encouragement and support we can give.  This forum has been a lifeboat for me, to keep me afloat in the hardest times.  I hope it can be for you, too. 
I'm keeping you in my prayers and thoughts.

Title: Re: Can I vent about my successful sister, family today?
Post by: A66eyroad on August 12, 2011, 08:03:59 AM
I can sooooo relate!  My very first post on this forum was asking what to do about my mother & sister who don't believe I'm sick, who think that I'm only looking for attention. They don't even believe that I really need glasses, either; they think I just wear them because they're cute. (Although I do have to tell you, they really ARE cute!)

So I posted my problem and read wonderfully helpful posts from my forum family and realized that I could only be what I am. And by the same token, my mother and my sister can only be what they are. And to expect them to be anything other than what they are - self-centered and shallow - is only hurtful to me.

How rude of your sister to have talked negatively about you to your son. That was offensive to both your son and you. I hope you both can understand that it's your sister who has the problem. She should have the "crip sticker" for her car because she has a handicap -- her handicap is Lack of Compassion.

I know it's easy to say and tough to do, and I want you to know that I never listen to my own advice! But there's nothing, no, not one thing, you or I can do to make our sisters different. If you've got a better relationship with yours than I have with mine, you might tell your sister, though, that it would be best if she would keep her negative opinions to herself.

I love Melinda's take -- that your "family of origin" is fearful. Iwish it were so! But sorry, I don't buy it. I grew up with judgemental people & I know how they roll. Meld, you're such a gracious person, much more gracious than I am. I get angry when people treat me (or mine) badly, and I'm fuzzed up on 12love's behalf! So please excuse me if my post is a little negative and downbeat. It's just that this has touched a very sensitive nerve with me.

I also want to reiterate another thing Melinda has said: You are NOT a whiner. In fact, since I've been reading your posts, I've thought of you a one tough bird! :D  You're kind and funny and caring -- certainly someone I want to be friends with, someone I want on my side. It's your family's loss not to have you. And our gain that you're here.

With much love from your inconditional family member,

Title: Re: Can I vent about my successful sister, family today?
Post by: Joe S. on August 12, 2011, 11:51:27 AM
12lovehim, Have you read "Spoon Theory"?

Has your family read it? Have you read Job? Job is one of my Hero's. With what we have, we face a lot of challenges. You are doing great!

Follow the Grief Steps and things will get better.
Title: Re: Can I vent about my successful sister, family today?
Post by: 12lovehim on August 12, 2011, 12:29:33 PM
Hello Family...

Oh.. you are all so refreshing.. Thank You.. Thank You.. I can also be a world class stuffer and this place has provided me the safety to release my internal self..

I have been so humbled by this DX.. Everything I have ever did was because I thought it was my duty and honor to do.. And I have done it for God and Family.. Not to get into religion here, just my personality.. So even my beliefs have been shaken.. The core of who I thought I WAS has been shaken.. I thought I was fearless no matter what.. I'm not.. I get scared crapless just like everyone else.. and I thought I WAS strong because it was my gift.. but I'm not.. I'm weak.. like everyone else at one point or another... I thought I was a never ending supply of Love, Compassion, Grace and Mercy... But what hid behind all that was Pride because I could do and be all of that when others couldn't..

OMG, even when the moments were real with so many I have helped and loved.. There was a bit of judgement within me.. I don't deserve what has happened to me.. No one ever would.. But the deepest pain has been seeing myself for what I really was.. And the shame I have felt over my own behavior over the years.. How many times I wished I held someone tighter, or cried with them instead of trying to get them to "buck up".. And hoping that mercy is applied to me when it comes to "you get back what you give out"..

Now before I do myself a disservice.. I have loved many people deeply, I have sat at countless death beds with friends, I have walked streets with friends looking for strayed teenagers, I have cried with many friends at the loss of their husbands at the end of a marriage.. But I have realized that there was a voice inside me that said.. I am so glad nothing like this will ever happen to me... Famous last words...

So, so much this week has been.. Who am I if I can't walk those streets looking for kids? Who am I if the stress of death causes a seizure, Who am I if can no longer help transfer the load off a friends back in their time of need? And do I need to do some house cleaning of friends in my life that have become emotional vampires? I always had so much to give before that it never mattered.. but as the story goes.. I know some who would take all my spoons by 7am.. and not blink an eye..

So as I embrace this new journey, with my new friends and family (A66  ;) )  I thank you all so much to allowing me to take you with me.. Thank you for letting me feel crazy, and calling it normal.. thanking you for affirming my pain not only in my body.. but in my heart as well..

I want to say a special thank you to A66.. Funny is never a word anyone ever associated with me.. But I have always wanted to be a witty, funny kind of gal.. Not the serious X-military type.. It's funny how we never realize how just one word or phrase will effect someone.. But my heart went... OH Wow.. They think I'm funny.. how exciting.. and it made my whole day!!!

So as the remake of Job otherwise known as my life continues today.. I just send a big shout out of love to you all..

blessings.. Keri
Title: Re: Can I vent about my successful sister, family today?
Post by: Katybarstool on August 12, 2011, 01:19:25 PM

It has been a roller coaster week for you - and you have got through it!!!! Your reflections touch a few nerves - I was always the strong one in my family. Since I've been unwell, it's amazing how a my closest sister has not been around. You are right, it's difficult for other people to realize that we are not invincible, and just fragile individuls - and sometimes they can't cope with it, so back off.

However, this is a special place to be. We can offer, and receive friendship in a manageable way. We don't always have to be the strong ones, but can be when we are able. And sometimes our online family will have to be strong for us. That's just the way it is. 

Wishing you a peaceful weekend.

God bless.
Title: Re: Can I vent about my successful sister, family today?
Post by: engy on August 13, 2011, 05:54:43 AM
You don't need to apologize for venting,  especially not to us.

You are still the same person you have always been. I know that one of the first problems I went through when I was dx was, if I can't do this or that then who am I? That's your choice who you are and what you do, even with our obstacles we can be successful too.

 Look how successful of a mother you are! You didn't tell your son to save him from hurt & work issues but your other sons told him (because they love you) & he believes you too. Sounds like your sister is jealous of what a great mom you are & your close family.

I used to be close with my brother too until I got sick. Now he avoids me like I'm contagious & is jealous because my mom & hubby & others are helping me. It hurts but I realize thats his problem & I can't change him. You can't change your sister either, or her hurtful words/actions. But you can choose to not let her (&others) feelings wear you down because negative energy can zap you & we need all the energy we can get!

Double failure? No way. Just because your family has pushed through chemo doesn't mean that was the best or right thing. Maybe it was? But it's not for you! We are all different & you are not a failure because you can't "push through this". You are successful because you are dealing with a lot of problems gracefully & with a lot of inner strength.

I will pray that things get better soon with your health & family.

Please continue to feel like you can always vent here, it really helps with the journey to be here!  ;)

Title: Re: Can I vent about my successful sister, family today?
Post by: jmkboyer on August 13, 2011, 08:45:59 PM
Hi Keri,

I am feeling everything you write.  My husband is the one who, with two words, can make me feel like I'm in some hypochondriac world.  The problem is that over the 15 years we've been married, I'm the one who did *everything* with the home and the kids.  Now I can't.  Yet I look the same for the most part (I think he'd understand better if I'd lost an arm or such.) It's hard working through the guilt of what I can't do as well as trying to re-establish my relationship with my husband.  Big ball of suck.

What I *completely* agree with you on is that this dx has taught me humility.  I used to be strong, a supermom who could organize/administer/bake anything for the PTO.  Who took her kids to 2-3 activities per day.  I was proud of what I did and smart enough to be able to juggle all these balls at once.  And with one stroke, it's gone.  So clearly God decided I needed a little humbling.

Hang in there.  I'm super new here but I already know I need these people. 

Title: Re: Can I vent about my successful sister, family today?
Post by: 12lovehim on August 13, 2011, 10:49:00 PM
I think you all would be so proud of me today!!!  My one last firm commitment on the books.. I did a funeral. Not a large group maybe 50 people. I was able to stand an honor an ALS/cancer patient who was my best friends mother.. In retrospect I think this has played a part in my "reality check" week.. Taking stock, seeing things for what they are.. I knew this was my last  official act at Rev Keri for a while.. as I have resigned 60 days ago.

Thanks Everyone for getting me through this week!! It didn't hit me till today after all was said and done.. Duh.. Last day in the Clergy Suit. I might not be able walk tomorrow from all the standing.. But the day was worth it.. Today was a good day..

Thanks Everyone.. Keri..
Title: Re: Can I vent about my successful sister, family today?
Post by: Meld256 on August 13, 2011, 11:37:45 PM

Yes, very proud of you!  I'm sure you did a fine job with the funeral.  That's always seemed to me one of the toughest things our pastors need to do, especially when the person is a friend.

I know you had a hard week, but tomorrow or next week will be better. We are all with you!

I also wanted to mention something very similar to jmkboyer's post.  This disease has taught me humility.  I, too, was a strong person, handled anything, did for others and also had great pride that I did them all well.  I juggled all the balls...played by all the rules. Never missed work.  And I secretly couldn't understand why some others couldn't keep up.  I didn't take time to understand that we never know what someone else might be going through.  Whether they had family problems, or a chronic illness, or whatever. If they didn't meet "my standards" then if I am completely honest I judged them.  And I am ashamed to admit it.

This "condition" has humbled me.  I've been knocked down a peg or two.  And, no, I've not always been gracious, as was mentioned.   ;) I've been hurt by others and I've been mad.  I just was able to finally realize they are not worth my energy.  I personally feel someone up above has helped me see my illness as a blessing in disguise, believe it or not.  In many ways, my life is better.  I'm still a work in progress, but I'm on my journey just like you and a lot of the rest of us here. 
Take care, dear.  We'll take the long road together...
Title: Re: Can I vent about my successful sister, family today?
Post by: irish on August 14, 2011, 10:18:14 PM
Keri, In search of the correct words all I can come up with is "God Bless your relatives because right now maybe He is the only one who will". Sorry if that sounds crass, but I get really fed up with all these well meaning relatives who do such a job on us.

I know that being ill much of my life and becoming more ill the past years has really changed a lot of the way I think. I think a lot of it is because I am older, but I also know that I have given this illness over to my God. I can't carry it, I don't want it but I've got it and I don't know what to do with it.

It has changed the way I look at the world. Heck, it has changed the way I look at the flowers, the moon, the sky, the sunsets, you name it. Life is short. If people aren't going to care enough to even validate my illness then I don't need to worry about them or maybe even think about them much. Life is short like I said and to waste time on something I can't do anything about is really an exercise in futility.

All I know is you are caring and have given your all in this life. You are not being punished with this illness because nothing happens without a purpose. Any suffering we have is a lesson in humility and teaches us more than a million days of being rich and famous. The people who do not suffer are missing out on a great lesson in humanity. If it were not for suffering we would not know joy and freedom. We can't put a value on what we are going through but it is not without merit.

I bet if we all got together we could almost finish each others sentences because there is an understanding that is gleaned from having to sit and be quiet and listen to our heart and soul in the midst of anquish.

Keri,You have done what you were supposed to and you will continue to do so. You will have good days and bad days but your sister will find as life goes on that she has missed the boat. Pray for her and let her be---she isn't going to change until she wants to. I would just let your son work there and basically visit but not invest much of himself or his emotions in her talk. She knows not of what she speaks.  Hang in there girl. You have made it this far and you will continue to do so. Irish ;D 8)
Title: Re: Can I vent about my successful sister, family today?
Post by: kimbo on August 15, 2011, 08:38:33 PM

Thank you for opening you heart up here, in doing so you have united us all together in our journey.

These replies and the dialog of your own relationship stresses, serve us all, and I stand amazed at how the words of this forum family has emotional healing for you and all who read this thread.

I can't add anything more, but know that I join in the prayers for you and your family.

I also understand the ministry, I as a pastors wife of many years, feel less of what I was before, SJS.

But today, I spent hours in the hospital/ER beside a dear elderly lady, who fell and broke her hip this AM, she has very limited family to care for her.

Then a visitation this evening and funeral tomorrow a dear couple with 63 years of marriage, leaving his sweet bride a widow and under going chemo as she grieves his death.

I worry at times , that I can not keep up and support my husband as I did in earlier years.

But reading this thread, renews my grip and determination, while also knowing my limitations and excepting them.

It is so important to discern, relative or not, who are your healthy relationships, and who are the
toxic relationships. Distance yourself form those that are toxic and embrace those who are not.

As I say this I know you mourn your disappointment in your sister. It is my prayer that she can see the harm and hurt of her words.

Love, hugs and blessings, kimbo
Title: Re: Can I vent about my successful sister, family today?
Post by: A66eyroad on August 16, 2011, 08:05:07 AM
...and that's why I love it here!
Title: Re: Can I vent about my successful sister, family today?
Post by: Meld256 on August 16, 2011, 11:17:09 AM

You have a great way of "seeing" things. And, irish, you always put things so well.  Absolutely, this thread has opened many of our hearts.  ;)  So, 12lovehim, do you see the wonderfulness of this forum? 

Someone comes here with a problem, they seek help, others can relate (many times in a very deep way) and by giving the first person guidance and support, we all benefit in an amazing way!  Helping others helps us...

Like you say A66ey, that's why I love it here, too!
Title: Re: Can I vent about my successful sister, family today?
Post by: 12lovehim on August 16, 2011, 05:45:26 PM
Hello All...
     I took a big leap today and showed my husband this Wonder World...  And this thread.. Because he asked me.. "Whats' changed in you"..  I told him I could tell him.. but if he opened his heart.. I would show him and that He could really see what I go through, and how I am not alone.. I hope that has not offended anyone..

   You should have seen the tears in his eyes.. It opened the doors for a long overdue conversation between the two of us.. But he also said.. " I had no idea that so many were suffering too.. and I can't believe they all said so many of the things you have been trying to tell me".. It was a true Ah Ha moment for him..

I do love my hubby so much, as I know that he loves me.. This has really been the first time in many years of marriage that I needed him to take care of me. Now he really understands so much.. and as far as this thread and the many beautiful people here.. My husband said he will never question me again on why I come here, and why I like it so much..

It was never my first intention to see it developed the way it did.. but what amazing woman you all are! To take a moment out of your day and encourage each other so well.. I dare say if the Church had this much compassion.. (well we all wouldn't really be here now right..  :P  ) 

I look forward to acts of Love and compassion towards you all as our good and bad days come.. Just know you have made a friend here this last week!

Love and Dearest Blessings of Health and Joy... 12lovehim or Just Keri
Title: Re: Can I vent about my successful sister, family today?
Post by: Meld256 on August 16, 2011, 07:28:11 PM

I think it's wonderful you showed our little world and this thread to your husband!   :D I feel no offense; I feel joy for you!!
Sometimes it takes that sort of thing to start a good conversation with our spouses. I believe most really try to understand, but as we know, it's so hard even for US to understand, so we can try to see how it is for others.  I'd say my husband and I went through about a year of heart-felt talks about all this til he could really see what I and others go through, and how my illness affects him, too.  I am so happy for you sharing this with your husband.

As said before, when we help one another, it helps us all. Not to bring religion into this too much, but on a personal note, I believe God brings people into our lives when we most need them, at just the right time.  I feel that this site is another way we can show his love.
So happy for you...and yes, I'm honored that you're a friend.  ;)

Wishing you many new blessings,
Title: Re: Can I vent about my successful sister, family today?
Post by: A66eyroad on August 17, 2011, 06:49:03 AM
How wonderful that we were able to help you - and we didn't even know it!   :D  Angels unaware, no?

I've shared a few things from this site with my husband, also. He was especially helped by the "Spoon Theory" link ( and even asks me sometimes whether I've got enough spoons left to do this or that.

12love, my friend, please allow me to do whatever I can whenever I can to make your life easier! I'm pleased to be able to be there for you -- even when I'm far away!
Title: Re: Can I vent about my successful sister, family today?
Post by: Carolina on August 17, 2011, 08:18:43 AM
Oh Dear 12lovehim,

I think love and understanding are needed here...................

And maybe not so much judging?

That and we never see the INSIDE of anyone's life, you know?

It is so easy to be on the team when everyone is strong and winning, isn't it?

I've decided to let other people spend some time loving and understanding me.

And putting up with me!   

I am 'an opportunity' for others to learn to express and learn tolerance and love, no?   Life wouldn't be life if everone were perfect (and no one IS perfect of course).


Ease up and yourself and everyone else.    It's hard work learning to let go of being strong and in charge, for everyone.



Title: Re: Can I vent about my successful sister, family today?
Post by: CAT1962 on August 20, 2011, 07:50:43 AM
Keri, I'm so sorry.  :'( I am the oldest of 5 siblings and my sister just under me used to be very close. She is now a runner and rows for hobbies, has money (her hubby is a Dr, etc). She never calls me anymore because she says, " i just don't want to hear anything that isn't happy". (I don't even DISCUSS the Sjs with her.) I now call Sjogren's "this stuff" in front of all of my family because frankly no one cares.

Keri, I care about you. You can MY sis...:'-)

Title: Re: Can I vent about my successful sister, family today?
Post by: Meld256 on August 22, 2011, 01:41:16 PM

I hope this week is going a little better!  :D
Title: Re: Can I vent about my successful sister, family today?
Post by: Danielle28 on August 23, 2011, 08:41:43 AM
I really understand, I've always been the one that stepped up and found a way to help. When my grandmother got sick, I went and was with her in the hospital every day and overnight even, to make sure she was never alone, I held her hand until she took her last breath. I wanted her to be at peace each time she opened her eyes.   Right after she passed, my other grandmother was having some rib pain. I encouraged her to go to the doctor, they sent her for a biopsy, I took her-  I held her hand when they told her she had stage IV lung cancer, I was there through chemo, and at the hospital, fought to bring her home with hospice, and bathed her, medicated her, and held her hand... stayed up with her all night as she was passing.  I was at her side.  I've always tried to be a giver- I've always tried to do what I would hope someone else would do for me.  I am constantly advocating for my 8 year old son with bipolar disorder, because so many people don't believe it exists-  but if they lived in our home, they would see it and understand. I guess that's kind of how it is now.  People kind of dismiss it. If I said "I have cancer" or "I broke my leg" they'd be inclined to help... but you can't see my sickness, unless you see me regularly and see me when my color drains from my face and a purple rash pops up under my skin, but it doesn't happen all the time.  My family doesn't really check in with me...  I have one friend who does, and my cousin does, because she has fibro and microfacial disorder so she can relate to pain that people can't see.  I like being the person who helps others. I want to do so much more.  I haven't even got to meet my new niece because I can't travel that far right now.  I hope somehow your family can come to understand. I guess I'm just trying to say I do- this group is so great because each of us kind of ends up in our own bubbles...  my world has become a little bigger :)