I had read on here that the Discovery Health Channel was doing a piece regarding Sjogren's last night. I missed the episode which came on at 7 so I stayed up until 2 a.m. and caught it. I felt so validated and really wanted to record it so I asked my son to help me do that.
He'd been sitting here on the computer and did not seem at all interested when I asked him to watch it with me. (He is, after all, 23 and just doesn't seem to get it.) So he popped a tape in and pushed record. Something went wrong. It did not record. So today, I was going to have him and my hubby watch it with me, in hopes that perhaps they would see that all this stuff with me is not imaginary, the joint pain, the fatigue, etc, all of it.
Now it is gone. Hubby didn't even seem to be interested enough to help me figure out how to find a clip on the computer. I would cry right now. Except that I probably can't make decent enough tears too. And I'm feeling too sick, tired and depressed to even cry anyway. I just really wish someone in real life, someone around me could have seen that show and what the woman in it went through all her life, just to finally be diagnosed at fifty. Her story was my story. Now it's all gone, because a stupid glitch in recording.
Please forgive my rant. I just wanted some validation in my life, thought I had it and like I said, it's gone.
Hi Lurkernomore :)
I'm sure that programme has been on before and is liable to be shown again. Most shows seem to repeat these days. Hopefully you can catch it the next time around.
I have 4 kids - and they are way too concerned about what's going on in their own lives to give how I feel a passing thought. I also have a husband who has, for his midlife crisis?? , taken up cycling - and honestly thought that I might like to too - so I really do understand about families not 'getting it'. Actually - one son, who turns 24 tomorrow, does 'get it' but he was horribly ill himself for about a year and it's given him a whole new perspective on life and he's nicer for it.
All I can say is that we understand in here - but then you know that already.
Take care - Scottie :)
Thanks so much, Scottie. I do feel blessed to have this online community/family here. Everyone here is so understanding and compassionate. I'm sure I'm not alone, and I'm sorry you have to share the feeling, in wishing that the validation and understanding would come in real life people too.
Sometimes I'd just give anything if someone would just look at me and tell me that they understand and I don't have to explain or apologize for anything anymore. I've felt like I had to do that my whole life and it's so tiring. And now it just feels as if everyone has moved on with their own little worlds, because I couldn't keep up. Listen to me, I sound soooo pathetic! We should form a songwriter's group and write ballads for times like this, huh? It's too bad I'm not into country music, LOL!
Hi Lurker,
I'm sorry that you're having a tough time, and we can sympathize with you! I've noticed that life does seem to start to leave you behind; it's an amazing thing to watch. I do feel for you as I know how hard it is to explain this mess to anyone, especially someone that's never had to deal with an AI issue (you can watch the eyes glaze over and you know they'll never "get it" until they themselves have to deal with a chronic illness).
Like Scottie said, it'll be on several more times before the year is done - it seems to me that the Discovery channel tends to wear out the medical programs before they show new ones. I know I saw one show about Cushings several times this year alone - whew, the powers that be should realize that there are a lot of folks that watch late night TV. I normally don't mind reruns, but to see the same one over and over get depressing; is it a wonder that I have a good collection of DVD's? :D
And Lurker, you don't have to apologize for how you're feeling with us; just be the great person you are.
Take care -
Patze
It was supposed to be on at 7pm on Saturday but somehow it wasn't on and was replaced by jellyfish!!! So, I don't think it was your recording. I really wanted to see it too but missed it.
Steve
Thank you Patze and all, for being so understanding. I think the main thing that is getting to me right now is that both my parents are getting on in age and magically, I am supposed to be able to find it in me to care for them, when for the past hmmm, twenty years or so, they have not even attempted to acknowledge that I am not well myself. Arrggghhh!
My dad took off and left eighteen years ago, to "follow his dreams." Good for him. That left me to pick up the pieces of my shattered mother. She decided to get back at him by not eating, getting sicker and sicker, but it didn't effect his life. It just meant long hours of sitting at the hospital by her side for me.
Now he's moved back and has announced to everyone, even right in front of me, that it is because he is getting old and feeble and it's time for me to take care of him. Uh-huh.
Right now they are battling it out without speaking, for my attention. My mother is winning, because she has decided, on a whim, to sell her home and move into an apartment. She's decided this, knowing she cannot even pack herself, due to COPD from years of smoking. But it's okay, she says. I can pack for her and my hubby, who has taken the week off to get a little R&R, can move her furniture. Dad has learned this and so he came for dinner, ate, napped in the recliner and got up and left in a huff.
I really don't think I am supposed to be feeling all the resentment I do, but I can't help it. I want to just tell them both to grow up and leave me out of it completely. Phew, again, I am so sorry. I think I am losing my mind.
Lurker,You are not losing your mind. You have sjogrens and you feel like crap and no one is giving you the validation that you need. It is not that we need attention, it is that for just one minute out of someone's life(relatives) it would be nice to have them say, "I know you don't feel good, and if I can help please let me know". That is all we ask---not sympathy just validation.
As for your parents, I guess if it was me I would get them together if possible even if outside in the yard!!!! I would tell them that they would have to find someone else to move them and/or care for them. Tell them you have done your fair share and now that your health isn't the best you need to take care of yourself. I think that is only fair.
You did more than is expected of a kid putting up with parents who were acting like children and you don't need to ruin your health over them. They made their bed and their trying to manipulate you in their old age needs to fail. You do not need to feel guilty over this. There are people who can be hired etc to take care of their needs. If you were not living close by what would they do? I bet they would manage somehow!!!
Pardon me for sounding so darn tough, but as I get older I just don't accept all the stuff I did when I was young. Life is too short and people trying to lay guilt trips on us is their game. It is too bad that people have to be this way. Another thing you could tell your mom is that you will help SOME if she finds someone else to do most of the packing. Please let us know how this turns out for you.
Also, can you ask your son or someone else to show you how to tape programs. I know what you are going through. I am electronically challenged. Got a DVD player last year and haven't used it yet. Son showed me how and I wrote it down and lost the instructions. At least if you can tape other things you can also do the Discovery show when it is on again. You can then insist that family sits and watches it by threatening to quit cooking. :D I hope it doesn't come to this but sometimes being more assertive works better than getting frustrated and crying. Keep us posted. Irish ;D
Hi Lurkernomore,
First time I have talked to you, so welcome to Sj. I have seen it a couple times on the Discovery Channel.
I went to the Discovery Health Channel. They have a Sjogrens Guidebook but I didn't see if they were going to repeat the show any time soon. Sorry.
Denise
Oh Irish, thank you so much for your sweet post. You don't sound tough or harsh, you sound like a person with Sjogren's who knows exactly how it feels to be screaming and not being heard. I have tried it all. I've bought the Sjogren's handbook and given it to my parents, (neither have even opened it yet,) I've not tried to hide my pain, yet they look the other way. I figure if you don't acknowledge someone (me) has a problem you (them) don't have to do anything to help.
And that is where the frustration lies. They've refused to see, all these years, what I've gone through, put me through more than any teen-ager or young, to middle age person should have to bear and now? They just keep pulling, one on one side and one on the other. I feel like a rubber band, ready to snap.
Thing is, I have an older brother. But he is always so busy with his life (yeahhh, he gets to have one) that they don't even expect anything from him. And he doesn't disappoint, LOL! He has said he will help mom move, once she is all packed up. Great! She is a hoarder and when I walk into her house, with unopened boxes stacked to the ceiling, I don't even know where to start.
But the packing must start today. I have no choice. There is no one who would tackle that mess but me. She keeps telling me I'm all she's got. So on top of hurting, having anxiety attacks right and left, I feel like dirt that I resent all this so much. I swear, right now, I'd give anything if I could cry. I think it would probably be a great release. Wish me luck. I am off to tackle a few mountains of unopened QVC boxes and undone laundry, it's just surreal what is in that house.
Quote from: lurkernomore on September 02, 2008, 04:45:59 AM
I have no choice. There is no one who would tackle that mess but me. She keeps telling me I'm all she's got. So on top of hurting, having anxiety attacks right and left, I feel like dirt that I resent all this so much. I swear, right now, I'd give anything if I could cry.
Honey i am feeling your pain and frustration and resentment and you have every rght to feel that way. But don't get angry at yourself. Get angry at them. For 30 years my mother told me "You're all i have. You are the reason i get up in the morning" For 30 years i was her emotional crutch cause she found it easier to rely on me than help herself. I ended up getting very ill mentally myself because of her manipulation. DOn't let your parents tear you down. Even though they are not acting like it, they are grown adults more than capable of making their own decisions. And your brother needs to pull his head out of his butt and give you a hand too. Not just when the hard stuff is done. My mum had COPD too and boy did she play on it. Like your mum it was from smoking. Even though she knew it was killing her she kept doing it and expected me to run her to all the medical appts and visit her in hospital when she got too sick. From one who's been there, I'm sorry you have to go through this. No child no matter how old or young should have to be caught up in their parents stuff. I'm thinking of you
Pud
Hi Katie,
I haven't replied earlier because your post sort of hit home with me. I really didn't know what to say, except there is light at the end of that tunnel.
As Pud said, you just have to let your parents know, they have to grow up and handle their own problems. It's hard but it's something that will be best, not only for them, but for you and your own family too. You and your husband have your own life now. Not to say you shouldn't love your parents, it's just that right now "tough love" is the best for all concerned.
The more upset you are, the more you are going to be in pain from your illness. This isn't good. I know how hard it will be, but try very hard to think of yourself now.
I will keep you in my thoughts and prayers, take care.
Hugs and God Bless,
Pooh
Hi lukernomore, sorry to hear your family dosen't get it. And that you are feeling so crumby. It does help when there are people around you who do get it. But what I've noticed is that it seems that not even the medical or scientific world has been up to speed until recently. I have a feeling the world will know soon enough and therefore your family too. About the program, I don't get that channel so I didn't see it either...but can you contact the station and purchase a copy of the video? I think ususally on those kind of programs they sell the video. Take care, Sandra
Thanks so much to all who have replied and apologize for not addressing each post separately, but I am worn to the bone tonight. This morning as hubby and I dressed to go help mom pack, she called and told us she thought she needed to go to the ER. She is no worse than she's been for the past couple of years, but in spite of my begging her to allow her pulmonologist to put her on oxygen, she upped and sold her home instead, ignoring the fact that she can't even do laundry for herself.
Yikes! The have admitted her. So tomorrow I will be splitting my day between staying with her at the hospital and going to her house and starting the packing. I know already it won't be done to her liking, but it will just have to do.
We were at the hospital for ten hours with her today before they decided to admit her and their chairs for visitors are a very hard, unyielding plastic mess. I pray the ones in her room are better. I feel like I've been beaten with a ball bat and then run over by a truck.
Oh my Katie - that's the last thing you need right now. :(
Packing up a house is a pretty exhausting business too. I do hope your Mom is OK and that you can pace yourself somehow.
Take care - Scottie :)
Thank you Scottie. I went over to the hospital this morning and took her pj's and essentials and helped her bathe. It looks as if she is in the for a good while. Meanwhile, the lady who bought her house is getting a bit impatient, so my husband and dad (divorced from mom) are sneaking and moving her furniture into her new apartment and expecting me to be the one to break the news to her that she is "being moved out." I am gonna catch it for that one. I'm gonna catch it whichever way I turn, it looks like.
I just had to come home for while and try to catch up on my own family's laundry and put drops in my eyes. (Hospital air is not good for dry eyes at all.) Then I will go up to her house and see what I can pack up of her smaller things. She is going to feel so violated, I know, by us moving her things, but we have to. I don't know what to do about any of it anymore.
Hi Katie :)
Please try not to feel guilty. You're doing the very best you can for your Mom and that's all there is to it. Circumstances are dicating what is happening - not you. You're going to run yourself ragged as it is without beating yourself up about it too!
Whatever your Mom says - I think you're being a wonderful daughter to her!
Take care - Scottie :)
Thanks again Scottie. Now the doctors are saying they don't know when she is coming home. She had spoken with a neighbor last evening and the neighbor told her that hubby and dad had begun moving her furniture out. Today she seemed relieved and told me to just go ahead and move everything to her new apartment and have it all set up for her when she gets home. Ummm, oh yeah, and be available to come back to the hospital should she need me for anything.
So I have been at the hospital since 9 a.m. and now I guess I'll be going to her house to start packing her kitchen and bathroom things up. I think I will most likely be there all night. I need some caffeine, I think. Ha ha!
Like Pooh I've been reluctant to respond because your story hits the mark in my life too and pushes a couple buttons!
My parent situation was so much like yours and got terribly bad BEFORE I came down with Sjogren's...I cannot imagine what it would have been like feeling as awful as I do now!
The thank-less expectation and manipulation from my parents have almost completely stopped but it took a really good therapist 2 years of asking me "Tell me again, why are you allowing yourself to be treated this way?"
I had to tell him all my excuses that sounded thin and emotionally immature when voiced out loud.
He asked me if I would make such requests/expectations/demands on my child or even my worst enemy?
I had to realize my parents don't really love me but that's no reflection on me because they don't really love anyone else either...this made me REAL SAD.
Anyway it all hit home when he said my weakness with them is not heroic and sends a message to my husband and children that my parents or, God-forbid my own cowardice is more important to me than they are! Pretty low moment.
It was a miserable process but I have come out the other side of it feeling free and better able to love the ones who deserve and truly need me.(children husband and my worst enemies)
I hope this doesn't sound righteous or preachy because my feelings of shame and regret are huge and so I offer my story with humility and sincere wishes of peace and love in your life.
Janna
Way to go Janna,
You sound like you have been to heck and back and have lived to tell the tale. You go girl. Kudos to you. I think Lurkers story has hit a few of us here and it is just another example of how wonderful this little community is that we can feel that we can share and know that it is safe to share and be understood.
Lurker,
You look after yourself honey. Cause you know if you you don't say enough at some point your body will. Im feeling for you it is so hard to feel unwell and then have the demands of expectant family as well as going back and forth to the hospital. You take care
Pud
Thank you Janna and Pud. It has been pushing me to my limits these past few days and this evening I have officially hit the wall. I'm feeling a bit put out with myself, because I really thought I could hold out, at least long enough to get mom's stuff moved.
Then it hit me that I just went back on the Plaquenil last week and it's giving me a lot of GI problems, heat intolerance, or at least I think it's the Plaquenil. I am having to park my car in a garage and walk about two blocks in heat better than 90 degrees, going to and from the hospital too. I don't know what tomorrow will bring, but this evening, I just allowed the crash to happen. I didn't pack. I stayed home and rested. In my head, I feel guilty and antsy. But in my body, the hips, back and legs are screaming "give us a break!" LOL.
your body must have read my post lurker, im glad you listened to it though and are giving it and yourself a rest.
Take care tomorrow is another day.
HUgs
Pud
Kathy, I am going to throw this out at you. I got as far as the post where your mom is in the hospital. As a nurse who worked in geriatrics for 25 years in both nursing home and assistive living I got involved in lots of things.
I don't know the status of your Mom, but if she has her house stacked with things she has hoarded and is not physically able to remove herself from danger in this crowded environment, she is considered a vulnerable adult. She may even have more loss of mental functioning than you are aware of as the family is usually the last one to know this. A parent can be very good at covering up confusion, etc.
You might want to call Social Services and report this and you can do so in the USA without revealing your identity. Also, with your mom in the hospital you can talk to social services at the hospital and explain things to them. They may be able to take the bull by the horn. At times like these it is great to have social services be the "villain" and get the ball rolling to get a parent into assistive living etc.
This is just a thought. When people are in the hospital and are older they usually have a social worker assigned to them who is in charge of discharge etc. Maybe this would help you. When you can't do all this stuff it is nice to have some help. Irish ;D
If she would have to go to assisted living etc it would give you a longer time to deal with the mess.