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Sjogrens Topics => Living With Sjogren's => Topic started by: louise on January 17, 2010, 07:17:23 AM

Title: Family not much support
Post by: louise on January 17, 2010, 07:17:23 AM
Hi, my name is Louise I found out I have SS about 6 months ago. I have very dry eyes ,extremely dry mouth and plenty of muscle pain and nerve problems. For years I have had one thing after another wrong with me. Until one morning I woke up with my patriot gland swollen the size of a grapefruit I had very little answers. Even after going to the doctors with this I still got no answers or good reason from my doctor.I searched for causes and ask doctor to test me for SS.Everything finally fit. I tried Plaquenil for a while but it made my leg muscles worse. I am in constant pain and deal with daily depression.My family doesn"t seem to understand I get the feeling they think this is just another complaint.That they feel I always am sick or in pain.I try to talk with them about SS and they show no interest at all. This hurts so bad. My husband excuse for the cold shoulder is I shouldn't dwell on it. But how can I not when it is with me 24/7? Waking me up with pain or dryness. I'm real scared of not being  able too work much longer I'm a hair stylist I stand all day .I really feel this is causing me most of my leg and arm troubles but can't afford to quit working. I also don't want to give this part of my life up. I need to talk about these things and have no one in my life who doesn't seem indifferent  to what I have to say. Has anyone else gotten this type of reaction from family?
Title: Re: Family not much support
Post by: Joe S. on January 17, 2010, 07:52:08 AM
If things are in remission, or you find a method of pain management that works for you, you will still be able to work, only if it is part time. I do.

I suggest that you and your closest family read "spoon theory". Remember that they have no idea what you are going through and often feel helpless and frustrated about your situation.

Research western medicine and alternative medicine. Find what works for you. There are many suggestions that you will find in the archives of this forum.
Title: Re: Family not much support
Post by: ruby52 on January 17, 2010, 08:12:21 AM
I'm sorry you have to suffer with this and glad you found us.I'm fortunate to have a supportive family but that being said they still can't know what I'm going through with this weird complicated set of symptoms.

It's nice to come here and ask questions or vent among people who know just what your going through.The Spoon Theory is very good to start with.

I hope you can find some relief from the pain.Sounds like your just starting on your journey.
                                                             Ruby
Title: Re: Family not much support
Post by: louise on January 17, 2010, 08:45:37 AM
Thanks for listening I appreciate  the suggestion and will check out the book.
Title: Re: Family not much support
Post by: Epson on January 17, 2010, 09:03:53 AM
If you want an understanding family member, non judgemental with unconditional love, get a dog.
Title: Re: Family not much support
Post by: Chickpea on January 17, 2010, 11:00:08 AM
Hi Louise

Welcome to SjS World!  I'm sorry to hear that you're so unwell and that it's made so much more difficult by your family's attitude.  In my experience it takes different people very different times to adjust to something like SjS, and that includes both the people with it and their loved ones.  Some people liken it to the grieving process, with times of disbelief as well as anger.  Maybe your family can't face the idea of you being so ill?  Or maybe they're just used to you being 'super mum', working and taking care of them, and they don't want that to change?

As with many others here, I've found SjS World really helpful in this regard.  My family know how much the web site means to me.  I think it's helped them see that my problems are not unique to me, but that there's a world of people in the same situation.  Some people encourage their families to read messages too so that they can see for themselves.  Maybe that would work for your family?

Sorry to hear that Plaquenil didn't work for you.  How long did you try it for?  It takes most of us around 6 months to feel the full benefits of it, and quite a time to adjust to it.  Has your doctor had any good ideas about pain relief options?  You're entitled to ask for his/her support and the best advice you can get.  Lots of us here have experience with different types of pain relief for muscle, joint and neurological pain so do ask for ideas and suggestions.  The same applies to depression - people here will be happy to tell you their experiences and what's helped them.  All you need to do is ask!

Take care - Chickpea
Title: Re: Family not much support
Post by: louisa on January 17, 2010, 01:51:18 PM
Hello Louise
I really feel for you. Before i married my nice husband i had an awful boyfriend who when i started to get really sick, told his and my family and friends that i was being negative and that positive thought would simply banish my "imaginary" symptoms! At first unbelivably a lot of people went with this theory until i collapsed, lost 3 stone and looked like there was indeed something wrong with me. Even those around you who love you just somethimes do not understand how out of control you can feel with symptoms that go on from one month to the next and when you get negative results they say "see". You know you are ill and instead of wasting your time constantly explaining that to them try to put what energy you do have into finding a good GP or Rheumy. IF people start to demand stuff that is unreasonable do by all means just say "i am sorry you cannot understand, i am doing everything i can and at the moment i am using everything i have dealing with this pain and discomfort" and then walk away and either log on here or do something that makes you feel a little better.My eyes are severely dry and i am now in my fourth month of this with no let up and it is my second attack so i know how the constant discomfort truly can rule you.
Have faith that things can get better and congratulate yourself for staying in your job as long as you have done.
Hopefully your family will eventually understand, my Mum now actually asks me how i am!!! (i dumped the boyfriend when i got the strength, best thing i ever did!!!) And yes i think it is a good idea if your husband could take a peek at this site, people often dont mean to be dismissive but if it has not happened to them they tend to spout all sorts of things before thinking about what really could be going on.
Louisa x
Title: Re: Family not much support
Post by: lynnmarie219 on January 17, 2010, 03:18:55 PM
Hi Louise,

You have come to the right place when you came to Sjogrens World! The others are right...many times our friends and family don't understand....maybe its because they cant see how ill we feel because of the invisible symptoms...maybe they are fearful of things they don't understand and haven't heard of sjogrens before...maybe they are fearful of their loved ones being ill at all...maybe its one of many other reasons...who knows???

The important thing is that you are not alone in others not understanding sjogrens...and you can come here anytime and be understood...this is a safe and comforting place where you can ask questions....find support...vent ...laugh or cry with people who really do get it and don't judge you and that is a wonderful thing...at least I think so!

I have been there and still continue to be there with some people who "don't get it". I don't waste my time on them anymore trying to explain myself..it takes too much of my energy and I don't have extra to spare on people who aren't going to be supportive anyhow.

Hang in there and know that you are part of this family now and can here whenever you want or need to....we are here for you!


Title: Re: Family not much support
Post by: susanep on January 17, 2010, 06:49:09 PM
Epson-I agree

susanep :)
Title: Re: Family not much support
Post by: harlin on January 18, 2010, 11:39:27 AM
Hi Louise
I certainly know where you are coming from. NO ONE UNDERSTANDS!! My dog maybe. But family just don't get it. My husband is trying but my adult kids no way. I watched my 2 gkids last week 2 days in a row and was told by my daughter "it is good for me" What to die of exhaustion???????

I slept about all weekend. this week I am watching them Tues and Fri. Spacing it out.
I don't know how to tell you that they probably are never going to understand. I sent her "Spoon therapy" but nothing!

I enjoy being on here so much I am probably driving everyone bonkers but you see they at least understand :D

harlin
Title: Re: Family not much support
Post by: Epson on January 18, 2010, 10:18:09 PM
I think it is real important that your spouse understands your situation, everyone else can jump off a pier.  My wife knows me well enough to know when there is something wrong.  You don't go from a workaholic to a vegetable for no reason at all or get lazy over night or become a vampire who can't be out in the sun without something being medically askew.  You don't know what it's like to be in someone else's shoes until you have walked a mile in them and lets face it, we have all been guilty of that, it's just human nature.
Title: Re: Family not much support
Post by: Joe S. on January 19, 2010, 07:20:43 AM
"Spoon Theory" is not a book. Here is the link: http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

I first read it as a post in a forum. It was much shorter than it is now.
Title: Re: Family not much support
Post by: louise on January 19, 2010, 07:18:57 PM
Thanks everyone for your nice post. Harlin I sure can relate too you. My daughter in law just ask me to watch her 2 kids so on Mondays ,she knew my son couldn't change his schedule .  She just started a new job and only works 2 days a week. She can pretty much set her own hours but doesn't want too mess up their week end. Well I'm off Sunday and Monday that's my week end. Last night We had them from 3:00 p.m. until 11:30 p.m. .I thought maybe 6-7  not gona have this happen again.   Things are better with my husband after getting so upset and mad  I said I was ready to file for divorce. I think him and my 4 grown kids are just use to me always doing everything.I am a person who just keeps going . Lately I just can't and they just don't get it.
Title: Re: Family not much support
Post by: harlin on January 20, 2010, 12:14:55 PM
louise
I just don't get why they just don't get it??? I am glad your husb and is doing better tho. Can't they see what is going on??

When you lose over 30 lbs in less than 3 months you'd think they'd get it. I now weigh a woppen 122. Haven't weighed that since before kids. Size 4 and to big. Most people would bragg about this but I am beginning to look like a skeleton. My eyes are sunken in and I need some sun!!!! Enough of winter already. Bring on the sun!! We would all feel better.

hugs harlin

Title: Re: Family not much support
Post by: dso618 on January 31, 2010, 04:28:23 PM
I actually had a family member say "Well now that you know you have this do you think its psychological?  Maybe in your mind you're exaggerating some of your symptoms cause you know you have an illness."  I was pretty offended although I know they didn't mean to hurt my feelings.  Its nice to converse with people who can relate, for sure.
Title: Re: Family not much support
Post by: harlin on February 01, 2010, 11:28:07 AM
how about my kids told me I am sick because I want to be sick. Who in their right mind would want something like this ???? certainly not me.  ???
I have given up trying to make them understand. I just keep it to myself. But when you have a flare, it is really hard.
harlin
Title: Re: Family not much support
Post by: Bernice on February 01, 2010, 12:22:29 PM
Harlin, I know this is not suppose to be a funny topic, BUT you are cracking me up!! Guess cause I can relate your feelings about those grandbabbies. Chile as much as I love my one that little thing can take a grandmomma D O W N!

My daughter who lives in NC had plans of leaving her (my 3 year old grand daughter) with me when they came for Christmas, and Lord knows I would have loved to have kept her again, BUT I just could not get over the fear of what it was like for me the last time I kept her over the summer. The only truthful way I can express what it was like is that I really thought my body had reached it's limits and would never be the same again, I thought I would be peramently damaged. EVERYTHING, I do mean EVERYTHING on my body was in such pain I could not bear to be touched, I had to drag myself around. You talkin about exhaustion, my Lord!

They came and brought her stuff for the stay, but I just could not do it, shoot I was already hurting while they were here! My husband told me to stop spoiling the parents and plus I need to be realistic and accept that there was NOTHING we could do with and small child at this stage in the game. She didn't mind, she had visited with me for a week, that was long enough for her too! My daughter and her husband just wanted to do nothing for a while!

Last summer she was 3 years old and this child loves her granny to death, she is always on me hugging and kissing or just because she wants to be in my lap. Lord knows I love this child to death and I tried to withstand it so I suffered much of the time, because I don't get to have her here, but towards the end I couldn't stand to be touched with one of her little fingers that she constantly like to poke in my arms and thighs.

Guess what? my daughter just found out she is having #2 and already wants to know how long I will be staying with her to help out this time, before she kept me there for about a month. Yeah God willing I will be there this time too, pain or no pain.

Harlin, sometimes I envy those of you that have grands close by, BUT then there are times when I don't!
Title: Re: Family not much support
Post by: Joy Cox on February 01, 2010, 01:16:40 PM
Oh Lordy, When get over this 3-4 hr. nap I've just finished, promise I will catch up on reading of this topic.

Bernice, you're a hoot!!!  Harlin, empathy for you runs deeply.  I am sooooooo 'discombobulated' at this moment best to not try and sneek my question, just ask straight out?  Harlin, how many kids, boys and girls?  Bernice, same; how many boys and girls?

Believe me I understand where both of you STAND!!!!! ;)

Not a dry stitch on me... think I go out and roll in snow and COOL OFF!!!!! ;D
Title: Re: Family not much support
Post by: Katybarstool on February 01, 2010, 01:31:51 PM
I'm lucky in that my nearest and dearest understand that I can't do what I used to do, even though they are never quite sure what's wrong with me. However, my d-i-l broke with us because she said I was just unwell to get attention ???

I've come to believe that people like her aren't worth bothering about.

Kathyx
Title: Re: Family not much support
Post by: wen.uk on February 01, 2010, 01:45:10 PM
Oh come on now folks - you know our friends and relatives are right about us, we should all be snapping out of this little spell we are enjoying so much.  After all we love it that our social lives are practically non-existent, our work lives are going or gone down the pan, we can't enjoy our kids/grandkids as much as we'd love to, our lives are so different from what they once were.

Seriously though, it's a shame that some of them can't open their eyes and minds and see what's going on under their noses.  We don't live like this for the fun of it, it's that we have no choice.  I'm very fortunate to have a good and understanding support network round me, mainly because my sister works for a charity supporting Carers, one of whom is a carer for her husband with SjS.  So I think she has educated some of the family.  Think I could do with hiring her out for a few days!!
Wen x
Title: Re: Family not much support
Post by: Bernice on February 01, 2010, 01:56:10 PM
Joy, I have a total of three offsprings, in this order, son- daughter- son, one grand daughter and another on the way.
Title: Re: Family not much support
Post by: jordozmom on February 01, 2010, 02:31:51 PM
Oh, isn't it just so frustrating?!  Just makes me want to kick something (or someone)!  I am lucky that my husband, son, mother and brother are very supportive and understanding. 

My husband and son see it every day (and my son has always known mom to be "sick" so he knows I have limits) and my mother has Scleroderma and Pulmonary Fibrosis, so she knows exactly what I am talking about and we can discuss it and compare notes.  My brother knows because he is used to my mother. 

But my friends are an ENTIRELY different story.  Of my two best friends, one has RA and is always very sympathetic.  Like with my mother I can talk about it openly with someone who truly understands what I am going through AND she totally understands when I am down and have to cancel things last minute. 

But the other one - OH!  I can't tell you how many times she has guilted me into doing stuff or told me I should just "suck it up" or has punished me by not talking to me for a week for canceling because I was sick.  Her dreadful mother actually told me once, "Have you ever thought about just telling yourself that you're not sick?"  SAY WHAT?!! 

And people at work don't get it, either. 

So don't feel like you are alone in this because people are like that all over and we here know exactly what you are going through.  They just don't know until they go through something like it.  I tell people it is like when you are coming down with the flu, only I feel like that EVERY SINGLE DAY.  Sometimes they get it but eventually you can just see it in their eyes "Yeah, yeah, yeah - I know 'you're sick'."

Just keep in mind that you will never be able to change what other people think.  You are just going to have to work on yourself.  People will give you "the look" or shake their heads or talk about you either to your face or behind your back, but you just have to keep on keep'n on.  Don't let them get you down. Just remind yourself that you have a disease, you know you have a disease, and the doctor knows you have a disease.  Doesn't matter what anyone else thinks.  THAT is the reality - not what people decide for themselves is your reality.

Well, off of my soapbox now!  Take care, Dear!
Title: Re: Family not much support
Post by: louise on February 01, 2010, 03:31:57 PM
It sure helps to know I'm not alone.  I just don't understand why people act the way they do. Sometimes I Feel I Just need to vent about hoe I feel today ,not sure why . But then for example I will comment on how sore I am today and I get no reply. It is as though they are thinking oh no here we go again,maybe if I don't respond she will shut up about it. I don't expect much of a response but I do expect one is this wrong?
Title: Re: Family not much support
Post by: Joe S. on February 03, 2010, 02:39:20 AM
It may be that they do not know what to say to comfort you. What can they say that would help you? For me there was nothing my family can say when I am having problems. The comfort that I find is when they go on with their lives and leave me to work through the pain until I can return to them.
Title: Re: Family not much support
Post by: Joy Cox on February 03, 2010, 05:53:29 AM
JOE, YOU AMAZE ME WITH YOUR WAY OF THINKING! DO YOU THINK THIS IS A MAN THING-IE? TALK TO ME; I CAN USE A NEW IDEA AVENUE OR TWO FOR THINKING.

 DO YOU ALLOW YOURSELF PITY PARTY TIME???  JUST WONDERING...

BELIEVE THE SPOON STORY MIGHT GIVE ME THAT JUMP START TODAY AS SURE HUBBY WILL BE OUT ON THE FARMS GOING OVER HILL AND DALE AND VISITING WITH HIS HEIFERS AND ALL THE NEW LITTLE BLACK BEAUTIES BY THEIR MAMAS' SIDES!! HIS LOVE OF LIFE...HIS RETIREMENT YEARS AT THEIR BEST!
Title: Re: Family not much support
Post by: harlin on February 03, 2010, 06:57:48 AM
Joy
I have a son 36 and a daughter 34. 2 grandbabies girls 2 and 5. they are so precious to me but man do they wear me out. I watched them for 7 hours yesterday and was exhausted when I got home. You see i have to go there about 30 miles to watch them. Heaven forbid they come to me.
harlin
Title: Re: Family not much support
Post by: louise on February 03, 2010, 07:47:03 AM
Harlin, mine will bring them on over so they can trash my house.
Title: Re: Family not much support
Post by: harlin on February 04, 2010, 06:52:04 AM
Suppose to watch them tomorrow but big snow coming in. We'll see. Takes me 2 days to recover after I watch them but wouldn't miss it for the world
harlin
Title: Re: Family not much support
Post by: ScottishLass on February 04, 2010, 07:08:25 AM
Hi there,
my family have been my essential support but yeah I get exactly what you are saying.....all the unseen pain and frustration you are feeling.......I also know that I personally feel that when asked how I am now I tend to just say 'fine thanks' unless feeling really awful, because I just feel they would worry all the time and I'd get sick of myself sounding like a complete moan 24/7 if I was to tell the truth as it is.
I too have just found this site and am DELIGHTED to at last not feel alone with all this........It's essential to be able to say how you REALLY are and to be understood and have empathic ears listening and responding.
You'll get that here!!!!
Take care ;)
Title: Re: Family not much support
Post by: harlin on February 04, 2010, 07:16:01 AM
I agree Scottishlass, but no one ever asks how I am feeling, I guess they don't want to know.
harlin
Title: Re: Family not much support
Post by: Joe S. on February 04, 2010, 07:29:15 AM
As I may have said in other posts, They just would not know how to respond. Change your problems into challenges. Ask them how they are feeling before they can ask you. Besides it throws them off guard. Remember "helping you helps me".
Title: Re: Family not much support
Post by: harlin on February 04, 2010, 07:33:19 AM
Thanks Joe I'll give it a shot
Title: Re: Family not much support
Post by: ScottishLass on February 04, 2010, 08:09:46 AM
That's such a shame Harlin.  :( and I do know that all too many humans seem so tied up with the rat race and in their own personal bubble at times that they just sometimes don't think........ (and I guess we are all guilty of not asking others at times......or not really genuinely wanting to know the reality of their day/life, or perhaps not having the time to offer a listening/empathic ear from time to time....I try so hard not to be one of those people but am sure I've been guilty of it on many occassions).....The Human Race eh..... AAaaaaahhhhhh, that's why I love animals so much.....lol... Give me a room full of dogs any time and I'll give and receive all the warmth and love I need :)
 Well how are you Harlin...you are with folk who genuinely want to know and care here?  ;)
Title: Re: Family not much support
Post by: jordozmom on February 04, 2010, 08:48:50 AM
You know, here is the funny thing - I tried the "I'm fine." response, only to have it come back in my face later when I have a flare or miss a function or miss work.  People will say, "But you've been fine for a while now."  Umm, no, people - I pretty much hurt and am dragging every single day.  There are never days where I feel "good" anymore, there are just days where I feel "less bad".  So now when asked how I feel I say, "Oh, you know.  The usual Sjogrens stuff.  But I'm making it!"  I think it doesn't hurt to remind these people who think you should "suck it up" that we are actually "sucking it up" every single day and it actually makes me feel in a way like I am stronger than those people because I am doing everything despite the pain and fatigue and the disease. 
Title: Re: Family not much support
Post by: Bernice on February 04, 2010, 08:00:15 PM
Jordozmom, THATA GIRL! HERE! HERE! I so agree, I see us as strong willed people, especially when I hear people complaining about a wet nose. I think to myself try dragging around a stubborn and rebellous body everyday! Feet that don't want to touch the floor, teeth that don't want to chew, brain that don't want to be bothered with most things I'm trying to pay attention to, legs that dont want to go where I want to go, hips that don't want to sway, back that don't want to bend, arms that don't want to reach, hands that don't want to grasp anything harder than cotton, eyes that have to be forced to see, skin that don't want to be touched, and TOES that just make you want to cut them off in one swipe! And the list goes on, and on!
But I'm here ready and willing to work and do most of the stuff you won't do! I think to myself!
Title: Re: Family not much support
Post by: harlin on February 06, 2010, 07:08:57 AM
Scottishlass
Thank you for asking!! I am still hurting all over especially my legs and ears and hand, pretty much all over. See the Rheumy on Tues. don't think anything else can be done they have tried about everything. I don't know if they even listen anymore. Watched the gkids yesterday and it takes me 2 days to recoup. Went to be at 8. Slept till 7.
Thanks everyone for listening!!!!!!!!
harlin
Title: Re: Family not much support
Post by: ScottishLass on February 07, 2010, 01:14:53 AM
Good luck for Tue appt Harlin.
Let's hope they get to the bottom of the problems soon for you ;)
Take care
Hugs
Karen
Title: Re: Family not much support
Post by: beverley on February 07, 2010, 06:00:06 AM
Harlin good luck at rheumy on Tuesday, you've been so kind to me and you're suffering yourself.  I feel ashamed I didn't ask.

Louise, I am lucky.  I don't know what I would do if my husband wasn't so supportive.  Admittedly he needs me to well enough to go to work as he is a self employed gardener and cannot pay the bills on what he earns, but even without that he is a very kind and considerate person.  My grown up boys kind of tolerate that I have 'problems', but it is my Mum who really doesn't get it.  She asks me if I am okay and says I mustn't overdo it, but she I think she has the idea that one day I won't have it any more.  My colleagues at work are good, but they don't get the fatigue side of it all, so sadly I play up the stiff joint bit more because they understand that better.  But - it is really important to have one person you can talk to - that's why it's so good here - coz there are dozens of people who understand.

Hope things get better soon.

Beverley
Title: Re: Family not much support
Post by: louise on February 07, 2010, 06:31:08 AM
Beverely , I know what you mean when you say your mom thinks one day you will get over this .My husband made the comment too me that I will get thru this just like everything else I have had go wrong with me and have gotten better from. I think I have given everyone the wrong impression of my husband  .He really is a great guy. We have been married 28 years and had a lot of great times. This has been very hard for me too accept .I am usually very energetic and the one who pulls the house and family together. My husband and I have had a few talks about his reaction too my illness .I have learned this is also hard for him to think I am this sick and in this much pain every day. Also all these meds I am taking really mess with my mood. Depression is very bad for me lately. I have always been so quick too look at the positive in life .So I don't understand this at all .I do think I over react at times.Also my husband has always treated me as a princess so when he seemed uninterested I couldn't figure out where this was comming from.It sure helps too get it all out in the open. I'm still working on my kids.It would be great if this would pass.
Title: Re: Family not much support
Post by: harlin on February 07, 2010, 06:34:07 AM
Thanks Beverley
Everyone here is so wonderful, they are all have such problems you hate to complain. I would like just one day without pain. Just one.
I am glad your family is so supportive. My mother like yours does not understand either. It is just easier not to talk about it. But sometimes it eats at you.
Hopefully Tues I will get some answers. at least some new meds. I think they are going to try Savella.
Weather doesn't help much either we have about 15 inches and expecting more this week.
yeck, come on spring. I need some heat.
hugs harlin
Title: Re: Family not much support
Post by: Rostradamus on February 17, 2010, 05:27:16 AM
Epson is right, but my cats are great too.   Families just don't want to hear it. It's so comlex and would take an actual effort to understand.   I use analogies alot; to try to relate it to something they can understand.    And ask them if they've ever been sick over a week, how about two?   Then bluntly say, "I have this for life. I can no more get rid of this than you can get rid of your small pox vaccination. It is chemically hard wired into my immune system.  I didn't ask for this unheard of plague. But it is, and I'm stuck living with it.  I just want as much of a normal life as I can have. And I'm trying as hard as I can."   If that doesn't get through to a person's compasion, shame on them and their soul.     Here we understand. I only wish I could give you a hug you so greatly deserve.   I'm so sorry. I know it can be a very loney thing.  Rosstradamus
Title: Re: Family not much support
Post by: Rostradamus on February 17, 2010, 05:33:01 AM
Epson is right, but my cats are great too.   Families just don't want to hear it. It's so comlex and would take an actual effort to understand.   I use analogies alot; to try to relate it to something they can understand.    And ask them if they've ever been sick over a week, how about two?   Then bluntly say, "I have this for life. I can no more get rid of this than you can get rid of your small pox vaccination. It is chemically hard wired into my immune system.  I didn't ask for this unheard of plague. But it is, and I'm stuck living with it.  I just want as much of a normal life as I can have. And I'm trying as hard as I can."   If that doesn't get through to a person's compasion, shame on them and their soul.     Here we understand. I only wish I could give you a hug you so greatly deserve.   I'm so sorry. I know it can be a very loney thing.  Rosstradamus
PS check into Fish, Flax, Borage oil to help protect from nerve damage.  There is much on my previous posts; what can help and where to research it. Doctors don't take that much time with use and usually don't know holistics or the tricks learned from living with it.
Title: Re: Family not much support
Post by: Joe S. on February 17, 2010, 06:15:26 AM
When people ask me how I am my usual response is "I'm alive" or "I'm alive, how are you?" If it throws them, they will ask about my responce; otherwise they will list their complaints which is usually the reason they asked in the first place.
Title: Re: Family not much support
Post by: meow on February 17, 2010, 10:10:51 AM
No one has ever heard of this disease...but they have almost all heard of lupus. Maybe if we explain it first thing as a variation of lupus, there might be some understanding. Even though that's not technically correct, it won't sound like it's psychosomatic, or something we can overpower through sheer will.
Title: Re: Family not much support
Post by: RobinBat on February 17, 2010, 10:16:24 AM
Also March issue of Ladies Home Journal has good article on autoimmune and mentions sjogrens with out glossing over what we go thru....
Title: Re: Family not much support
Post by: inga on February 17, 2010, 12:14:08 PM
When people ask how you are, it is more of a greeting.  I honestly don't think they want a play by play.   I don't discuss my illness unless some one specifically asks me about it, or specifically asks if I am 'doing OK'.  The last thing I want to be remembered for is my disease, or 'complaining' about it.

There are times that I have to turn down responsibilities, then I tell people for example, 'It is just too hard right now due to my illness.'  Period.

I remember when I was young and some older relative was talking about health, it went in one ear and out the other.  Younger people don't want to hear about disease.    Older people don't want to think about disease affecting them.  Other people still don't feel your condition is significant....because THEY have (insert whatever disease you want).  I have found that people want us to keep our suffering to ourselves, or suffer 'heroically, happily and most of all silently'. 

Most people want to talk about themselves and if you listen, you are real popular.
Title: Re: Family not much support
Post by: ros on February 17, 2010, 01:15:24 PM
oh I know just how you feel! As you can see I am new to this forum and have found it so great. My family are wonderful, but they don't really understand and think I look I look a "Picture of Health".  When I try to explain, I think I sound like a hypochrondriac! It just all sounds so weird and non of the symptoms seem to connect. I have not told anyone, except my immediate family that I have Sjogrens, because I think they will think I am going off my head.

,My husband knows that there is times I'm battling and is, I must admit getting better in his attitude to this.

Just keep coming back here, it sure helps!
Title: Re: Family not much support
Post by: beverley on February 18, 2010, 11:55:33 AM
I think one of the hardest things is that people ask how you are and when you reply with:  I am exhausted because of the fatigue I get with SJS, or my joints really ache, or whatever, they come back with 'I know what you mean.  I feel like that as well.  It's the time of year isn't it?'  And you think - does everyone else feel like me?  Am I just inadequate because they all cope with it and I can't or is there really something different about how I feel?

And you know what - I can't answer this question because I only know what I feel like.  It just eats you up this disease.

Beverley
Title: Re: Family not much support
Post by: louise on February 18, 2010, 08:42:54 PM
Beverly, It sure does eat you up. Some days it feels like it eats me up then spits me out grabs me back and swallows me up again and chews really really hard!
Title: Re: Family not much support
Post by: Bernice on February 18, 2010, 08:55:14 PM
No one has ever heard of this disease...but they have almost all heard of lupus. Maybe if we explain it first thing as a variation of lupus, there might be some understanding. Even though that's not technically correct, it won't sound like it's psychosomatic, or something we can overpower through sheer will.

I think it is important that the correct name is given, that's the only way that it will be aknowledged. People may not remember it even after you have told them, but the more they hear it the more it will be known and recognized as something to be taken serious.

I tell them I have Sjorgen's and autoimmune disease that mimic lupus, ra, and ms. I have NEVER met anyone who have ever heard of it except my doctors. ALL are like WHAT IS THAT? They almost always want to know more.

WE HAVE TO SAY THE NAME!
Title: Re: Family not much support
Post by: Joe S. on February 19, 2010, 03:44:18 AM
Bernice , There is a cartoon bubble in the tool bars that can be used for quotes.
Quote
Second from the right in the row above the smiles
High lite text to be quoted and hit the button.
I keep learning new things about how to use this forum every week.
Title: Re: Family not much support
Post by: Bernice on February 19, 2010, 07:55:20 AM
Bernice , There is a cartoon bubble in the tool bars that can be used for quotes.
Quote
Second from the right in the row above the smiles
High lite text to be quoted and hit the button.
I keep learning new things about how to use this forum every week.


Just checking!
Title: Re: Family not much support
Post by: Billydude on February 19, 2010, 11:51:54 AM
I think that noone can really understand unless they experience it themselves.   My motto is "If you don't expect anything from anyone then you can't be dissappointed".   I think we all have gone through the grieving process for our old selves and we learn to accept it and manage it.   Time will make you feel better.
Title: Re: Family not much support
Post by: navydad on February 19, 2010, 01:10:45 PM
1  I refuse to stop grieving for my old self,, there are to many reminders around me that tell me what I was able to do before
2  I refuse to just sit back and accept that this is it and theres no looking back
3  I refuse to stop beating on Doctors doors, or calling them so often they get sick of me, and telling them , ,Look if you dont kow,, you find me someone that does,, quit blaming everything on SS
4  I refuse,, to use the saying,, Go quietly into the night, I intend to make the medical profession aware that we suffer and want answers
5  I refuse to slow down,, I might not be able to drive a nail anymore without smashing my hands,, but I;ll keep trying,, I may not like what it looks like afterwards,, but I dont care
6  I refuse to never stop reminding my family that Dad has a autoimmube disease and that they need to understand and learn about it,, read Dam It, look it up and read what it does to me,,
7  I refuse to keep taking meds that do nothing except make me sicker, and lighten my wallet,, I;d rather not take anything,, but some are necessary
8  I hope I havent stepped on anyones toes
Title: Re: Family not much support
Post by: Epson on February 19, 2010, 02:24:40 PM
Billydude,

I totally agree with your statement, now if I could just get that medical marijuana this would all be a lot easier to handle 8)  I know a lot of you guys are into herbs and natural remedies, but I never see any mention of cannabis being used to relieve pain for autoimmune sufferers, especially if you can't take NSAID or aspirin.

I'm pass the anger stage or the why me stage, just give me a couple of hours with no pain or worries, is that too much for a man ask for ???
Title: Re: Family not much support
Post by: navydad on February 19, 2010, 03:35:08 PM
Epson,, I agree,,just a few hours of no pain,, no,, thats not to much to ask for, just a few hours,
Title: Re: Family not much support
Post by: Scottietottie on February 19, 2010, 05:58:17 PM
Hi Navydad

I admire your fighting spirit but you are soooo still grieving and so far from acceptance. Acceptance doesn't mean 'lying down and taking it' - there is still a lot of fighting to be done. You are never going to be like you were before though. There is no cure. It is possible to feel better than you do now though. Bitterness and anger don't make anyone feel good.

Take care - Scottie
Title: Re: Family not much support
Post by: louise on February 19, 2010, 08:13:02 PM
Navydad, I like your comments. I'm not giving in so easy either. I also agree with family needing too educate themselves . When I found out my husband had high blood pressure I took it upon myself to find out all I could about it. All the causes ,food that were good for him or bad and so much more . I kind of thought he would do the same. But he read on thing on line and that was that.Then when I had other symptoms that were not in that article he didn't think it could be related too sjogrens. I keep trying to do everything I can. A few thing I can't do but most I can. I am a lot slower and it may take me twice as long but sjogrens is not taking me down without a huge fight. Even when I feel like spending the day just laying around I force myself up and around . I usually feel much better then. As for pain, thank God for percocet and voltaren it is just a part of my daily routine now. Some days it just takes the edge off but it is amazing how your body just gets used too .pain and you learn too function.
Title: Re: Family not much support
Post by: Billydude on February 19, 2010, 09:06:13 PM
Epson,  I live in the heart of the medical marijuana area and I'm always around it.   However,  with our disease it doesn't really help much.   Not long ago I made brownies with it and had the worse experience ever.   Usually it just makes people sleep but I was up all night.   Seems the getting high part effects our nervous system and thats what makes us high but when Sjogrens effects your CNS like it has mine it is magnified ten fold.
Title: Re: Family not much support
Post by: Bernice on February 19, 2010, 09:21:15 PM
Billydude, That was funny! Oh well ya tried and lived to tell about it! I would think it would have those of us that deal with anxiety in a very nervous state like being on a horrible amusement ride, Lord I would hate to imagine that going on all night long. ::)
Title: Re: Family not much support
Post by: Joe S. on February 20, 2010, 02:23:30 AM
I know that this is going to sound strange, but...

I woke one morning a few years ago with no pain. The room was dark I had no pain. I thought I had died. It felt sooo good. When I realized that I was breathing, I knew that I was still alive. A few Minutes later the pain came rushing back, like a freight train. When it crashed into me, I wished I was still without pain.
Title: Re: Family not much support
Post by: louise on February 20, 2010, 06:38:01 AM
              I would think marijuana would add too the dryness of our eyes and mouth . In my younger days I smoked it quite a bit and remember the dryness.
Title: Re: Family not much support
Post by: navydad on February 20, 2010, 06:45:21 AM
I know that this is going to sound strange, but...

I woke one morning a few years ago with no pain. The room was dark I had no pain. I thought I had died. It felt sooo good. When I realized that I was breathing, I knew that I was still alive. A few Minutes later the pain came rushing back, like a freight train. When it crashed into me, I wished I was still without pain.
I did that last night,, for some reason I had a calmness over me,, but could not sleep, then this morning, like you it all came back, the nausea, the muscle pain, the trembling,, it never ends
Title: Re: Family not much support
Post by: Epson on February 20, 2010, 12:29:45 PM
Billydude, I'll be the judge of that ;D
Title: Re: Family not much support
Post by: Billydude on February 20, 2010, 12:35:42 PM
Go for it Epson.   I guess it reacts differently to different people.   What helps me the most is a xanax.
Title: Re: Family not much support
Post by: navydad on February 20, 2010, 02:58:15 PM
Xanax helps me when I start to panic over all this crap and want to slam myhead into a wall,, or someone elses
Title: Re: Family not much support
Post by: inga on February 20, 2010, 03:25:59 PM
I had a 3 month dance around with xanax, 10 years ago....it is freaking horrible to get off of....at any dose.  It is horribly drying AND, it has a very short half life, putting you into a withdrawal about every 4 hours.  Never again.  I took it at bedtime and by 3am, my blood pressure was soaring.  I felt like I was in a wash machine with a bucket of stick pins.  I had hot flashes, palpitations, pounding heart, nausea, dizziness, diarrhea, and the worst headache.  Not to mention, I thought I would die.

I took it once per day, at bedtime, at a relatively small dose.  UGH.  Not good for me at all.

Title: Re: Family not much support
Post by: eyeamdry on February 20, 2010, 05:16:56 PM
Epson said:

Quote
totally agree with your statement, now if I could just get that medical marijuana this would all be a lot easier to handle   I know a lot of you guys are into herbs and natural remedies, but I never see any mention of cannabis being used to relieve pain for autoimmune sufferers, especially if you can't take NSAID or aspirin.

Well, Epson, you'll be jealous to know that a dr (a real one) opened up an "alternative clinic"  (aka pot clinic) two days ago in my town here in the midwest.  He does not have pot on the premises, but for $200 he takes your history, examines you and gives you a "clearance or something" to be able to buy the stuff for your personal use.  If he finds you ineligible, he refunds the $200.  People from all over the state came and a couple from out of state, as their states had no such way to get the pot.  No, I am not looking to go there if anyone is wondering.  I would not judge anyone else though, (heehee). If anyone wants the name of the clinic or more info, PM me.  I live lower great lakes state near several bordering states to the south of me.  Lucy
Title: Re: Family not much support
Post by: meow on February 22, 2010, 12:56:41 PM
Go for it Epson.   I guess it reacts differently to different people.   What helps me the most is a xanax.

A few years ago they dx me with Chronic Fatigue Syndrome, and prescribed Welbutrin XL, at the "quit smoking" dosage of 150 mg. It's an off-label use, but it worked very well. Unlike most antidepressants, this one doesn't make you gain weight---I was pretty perky, like I'd had 3 cups of coffee, but able to sleep. They upped it to the "depression dose" of 300mg  2 years ago, and it helped tremendously with brain fog and fatigue. It now comes in generic form, so very very cheap.
I know you arn't spposed to stay on it for life, but I am not giving it up at this point. Most days, I still feel like ME, only drier...
Title: Re: Family not much support
Post by: Epson on February 22, 2010, 03:28:52 PM
Lucy,

Come on, give it a try and let us know it you feel better or just don't care about having Sjogren's anymore.
Title: Re: Family not much support
Post by: inga on February 22, 2010, 03:33:52 PM
It grows wild around here....they used to raise it for hemp during WWII.  I imagine it would be just awful if we grew it for fiber (instead of all that poly stuff from oil) and the rest for medicinal use, since it works for lots of people....and all that....hmmm.
Title: Re: Family not much support
Post by: navydad on February 22, 2010, 05:12:07 PM
If they made rope out of THAT stuff,, Lowes would not have a inch of the stuff in stock
Title: Re: Family not much support
Post by: beautifulkrissy026 on March 15, 2010, 10:58:06 AM
Hey I will be trying it quite soon. Hope they make it legal where I live (for medical use only), it's better then all these medications. I use to use it all the time when I was younger, but not for pain. So I will keep you posted.
Kristine
Title: Re: Family not much support
Post by: navydad on March 15, 2010, 01:35:24 PM
Ya,, let us jknow how it went,, I am curious,, I think Michigan is a state that allows it for medical use
Title: Re: Family not much support
Post by: Billydude on March 16, 2010, 09:02:38 AM
We have those doctors offices all over the place here in Northern California.   They are a bit of a joke because all you have to do is go in and say you have a headache and presto you have a certificate.   I sure wish California would just go ahead and legalize it because if California got into the pot business they would get out of debt on what they could make in taxes.   It always surprises me that alcolhol and cigarettes are legal and pot isn't.  The other two have much greater negative impact.    Just today I got an email from an old friend that said her daugter and family were just hit by a drunk driver and the little two year old is in critical condition.     
Title: Re: Family not much support
Post by: beautifulkrissy026 on March 16, 2010, 11:59:50 AM
The bad thing about making it legal for everyone is that there is no way to test if someone is smokeing pot and driving, but you can test for alcohol. Trust me I wish alcohol was completely vanished from this earth. Nobody should do anything drug related and get behind a wheel. I also don't think marijuana should be given to people for medical uses at the drop of a dime. There are people out there that could truly benefit from it and others who abuse it, that's why doctor's should abuse the right to prescribe it.
Kristine
Title: Re: Family not much support
Post by: Billydude on March 16, 2010, 02:58:00 PM
When I used to smoke pot I was hyper-careful driving.  I would drive 20 miles an hour and think I was going 60.  Being high on the road is safer than being drunk.  Not that I'm suggesting either is good.
Title: Re: Family not much support
Post by: eyeamdry on March 16, 2010, 03:35:41 PM
Michigan does allow it for medical purposes and we have a pot doctor/clinic in town.  He doesn't have pot on his premises, but can give you a prescription for it after an exam.  No I haven't gone there!
Title: Re: Family not much support
Post by: meow on March 17, 2010, 11:36:59 AM
But where do you go to fill the Rx? Walgreens?  ;)
Title: Re: Family not much support
Post by: Scottietottie on March 17, 2010, 05:08:06 PM
There is a drug test for marijuana. It could be tested as easily as alcohol.  :)
Title: Re: Family not much support
Post by: Billydude on March 17, 2010, 08:09:16 PM
But where do you go to fill the Rx? Walgreens?  ;)
If its legal then why not?
Title: Re: Family not much support
Post by: eyeamdry on March 17, 2010, 09:22:42 PM
This "dr" just opened a week or so ago.  The media made sure the public knew he didn't keep mj on his premises as he would be robbed probably the first day.  Since I'm not going to partake, or don't really care where they get it, I dunno.  I think they have permisssion to have a small number of plants in/on their premises.  Or perhaps they can buy it somewhere. 

Title: Re: Family not much support
Post by: louise on March 19, 2010, 07:31:33 PM
Perhaps they hang out on the street corner waiting for cheech and chong too come rolling by.
Title: Re: Family not much support
Post by: meow on March 29, 2010, 01:12:16 PM
The bad thing about making it legal for everyone is that there is no way to test if someone is smokeing pot and driving, but you can test for alcohol. Trust me I wish alcohol was completely vanished from this earth. Nobody should do anything drug related and get behind a wheel. I also don't think marijuana should be given to people for medical uses at the drop of a dime. There are people out there that could truly benefit from it and others who abuse it, that's why doctor's should abuse the right to prescribe it.
Kristine
They can't do a breathalyzer, but they can do a pee test.
Dr Dean Edell says they can distill the THC into an aerosol, and put it in inhalers, like for asthma. No solid matter loading up the lungs. The distilling apparantly lowers the buzz level a bit, but since you are using it for other reasons than the high, who could object? I hope they do this. It would help a lot of people.
Title: Re: Family not much support
Post by: bloodless on March 29, 2010, 02:02:29 PM
For all those with grandchildren that spend two days getting over watching them, tell their parents what I told my daugher....

"I love my grandbabies, but I want to be the PO Box grandma."

I don't babysit.
Title: Re: Family not much support
Post by: meow on March 29, 2010, 03:28:33 PM
But where do you go to fill the Rx? Walgreens?  ;)
If its legal then why not?
I think people should be able to grow their own if they want to. Walgrens would have to expand the size of their pharmacy counter if they started stocking mj!
Title: Re: Family not much support
Post by: Bernice on March 29, 2010, 03:56:28 PM
I am what you would call a P.O.Box Granny, but mine expect to dropoff for a month or two per summer, I have to admit I really miss my one and only grandbaby, who's three and get's excited at the thought of coming from N.C where they're stationed in the military.

The thing is she wears me out!!! Now that my daughter is expecting my second she is nervoisly wanting more of me, she's calling twice per week wanting to know when and how long I will stay with her. I told her about two weeks, she wants two months of me there with her after the two months of keeping the baby here! This chick has the nerve to think I should be there throughout the entire pregancy, she called a month ago to tell me that she and her husband had discussed it and decided it was the right thing to do!! ??? ??? ??? ::) ::) ::) Next week, can I come for baby's first year? She does not want the baby bonding with anyone else while she works and go to school!!!! ??? ???  I will be there if her husband gets deployed for four months. I know she's just nervous, but done lost her mind!!!!!!!

I keep getting these calls, "Mom I need you!"
Title: Re: Family not much support
Post by: harlin on April 11, 2010, 05:49:49 PM
At least they need you!! My son doesn't think I have anything that I am sick because I want to be and at least my daughter needs me 2 days a week to watch my precious 2 g'daughters.

They don't know how much I need them. I don't know what is ahead for me and would like to spend as much time with them as I can. I do try not to complain. If you could just talk to someone who understands [like you all] I think you would feel better.

I am sorry to be so down but I am having a bad emotional day. they come and go.

harlin
Title: Re: Family not much support
Post by: meow on April 12, 2010, 10:09:14 AM
I don't have the energy to watch my grandson more than a few days a month. He's 3. My son spent the last year fighting for custody, and won. I promised we would help, since he has to work on Sundays, and we have set it up so he only works 1 Sunday a month now. So I have him all day that day, and every now and then I get him from his daycare if my son has to work  late.

We all need to be needed. We all have different levels of that need. And there's only so many hours in the day!

My in-laws didn't ever babysit. They raised 6 kids, and with 17 grandchildren, how do you have a life, if you don't make some rules? They always would help in a dire emergency (like hospitalization!) and they would take the boys overnight once a year so we could have a weekend without kids. And my kids never felt like they were anything but  loved.
So maybe you can  work with your daughter to adjust things. How old are the girls?
Title: Re: Family not much support
Post by: harlin on April 12, 2010, 12:06:19 PM
Thanks Meow
My grand daughters are 5 and 2 1/2. They are really good but it still wears me out. I usually have them 2 days 8 to 9 hours a day. I like to rest inbetween.
harlin
Title: Re: Family not much support
Post by: meow on April 12, 2010, 02:05:45 PM
No wonder they are wearing you out! The little one needs to have a pair of eyeballs on her every minute of the day :o

 Does the 5-year-old help? At least she'll be in kindergarten soon, and you'll just have the one.

When my grandson comes, we have a routine. First we eat something, then we go outside, so I can sit on the patio while he chases the cats around and drives his little car around on the patio. I give him a cup and he goes around watering the plants and flowers. I can stretch that out for a long time. Then we go take the turtles out of their pen (box turtles, and giggle while they chase each other around the yard. For some reason, when they are not in their pen, the male thinks the female is a new girl in town, and chases her all over. We toss a ball around, too. I help him do somersaults.

Then we go for a walk. Strollertime.  Time to make every dog in the neighborhood start barking! We stop and bark back at each one, count them, announce what color they are, and wave goodbye. Having about 30 dogs to call on in a 3-block radius  takes quite a bit of time.
Then we go home, have a big drink of water, and chill out by reading stories on the couch. At this point Grandma here is getting tired, so we augment stories with Nemo and Spongebob if need be. 

That routine takes about half the day.
Title: Re: Family not much support
Post by: harlin on April 13, 2010, 08:37:34 AM
The 5 year old is in preschool 1/2 day so I have the 2 1/2 year old all morning. Get some one on one time with her. She loves to swing and would swing all morning. We then pick up the 5 year old and have lunch. then the 2 1/2 year old naps for 3 hours and I have one on one time with the 5 year old. We to go outside and swing, water flowers, play with the bunny. what ever she wants to do. Then about 3 I make dinner and she watches a little tv or helps me cook. On Tues we have dance so I get them ready for dance and have them there by 5:15. Daughter or sonin law releave me about 5:30 - 6. Then half hour drive home and I am exhausted. It does the heart good but not the body. I am just happy I can still help out at this time. Who knows what is ahead. Two days a week is all I can do and happy to do it.
harlin