Relatives not understanding and being mean

I was diagnosed when i was 20 in 1990, and the only person who understood was my mom and my older sister. The rest of my family reacted negatively and were very cruel. The reactions ran the gamut, with them saying i was faking, just wanting attention, overreacting, being a cry baby, imagining things, just eating the wrong way, somehow bringing it on myself, etc. They would do things to me that caused injury and pain just to test me. Some of them still think the lupus is all made up or not that bad and others, who now acknowledge i have it, get angry at me for being sick or unable to do certain things. I stay out of their hair and have stopped asking for help long ago, but they resurface wanting things from me that i can’t deliver because i am sick. My mom died in 2009 and my father is gone, too, though he abandoned us when i was 10. My sister is also gone. All the other relatives (can’t call them family, because they don’t act like it) have just abandoned me till they want something and then are angry and say cruel things when they are inconvenienced by my physical limitations or if they have to hear about me being sick. I work full time and have never borrowed any money from any of them. I am in terrible condition, and it’s sheer willpower, determination and necessity that keeps me afloat with a paycheck and health insurance. Has anyone else run into this? My family is now just me and my cat. It is so hard not to have people to talk to and count on consistently. I have some friends and a psychologist, but not anyone who i can “bother” too often, because they have their own families to tend to. Part of this post is just me being sad and not feeling well (i know, what else is new) and the other reason for it is because i am wondering if anyone else has experienced things like this?

I was dx in 95, when I was in my mid-forties. I had just re-married a year before and moved from the East coast to a rural town in the Mid-West. My Mom, Dad and Sister were there. My marriage lasted 8 years before he started cheating. I also had a 10 year old child who is severely disabled.
I have adult children in CO and PA.
After I found out the ex was cheating, I went to counseling for two years. Things did not change and I moved back near my family.
At first they were helpful. Then Dad passed away. Between then and now, we have been ignored. Yes, they have been mean and cruel. Now it is just my adult child and myself. I oversee her care. My health is getting worse, and I have a power wheelchair to use. We had to move about a year ago and no family helped. Some of our boxes are still packed.
We are about to lose our services.
The family does not know. The only person I keep in touch with is my older child. Yes, it is lonely.
We have been like this for 10 years.
The only solution I can think of is to move closer to my older child.
So, I do believe there are others like us around and not too many answers. Sorry!
Maybe someone else has an answer. It is not our fault we have these diseases. I just do my best everyday.
I wish you luck!
Blessings.

I am sorry, you are experiencing this poor reaction from your family. I have not told my family yet, and now I am in remission status, so not sure if I need to right now. Only my daughter knows. I have not told my family because a close member is ill with cancer and the toll is heavy for all to assist with this member, including me. I don't worry much of how people react, but, what I am doing is building my friend base with those whom are caring.

Please do not isolate yourself from the world. Just be open to new people and experiences. I try not to wear my symptoms or illness on my sleeves. If I am not feeling well that day, I take it easy and just tend to my needs, if friends call we talk on the phone, but, if I don't feel well that day, I don't go out. I think we as Lupus patients, want people to understand so much what we are going through and want the sympathy other patients receive, but, I think we will never get the same empathy as other illnesses, because our battle is internal and can flare at any time without warning. But, on the outside we look beautiful, well put together and etc. So, when I feel like crap and have to work, I go in and just complete the job then leave immediately, until I feel better.

Stay strong and don't isolate yourself.

Hello Lone Wolf,

Your definitely not alone on this issue i can't go through members on the same wave length in life besides members totally alone and have no one.

I love your determination to keep going and that's what you need where Lupus is concerned...those family members who get intouch when they want, if it was me would be given a wide berth on how they've treated you and still do as it's mentally upsetting you and that you can do without.

I myself only have my hubby who does understand how bad we all are but regarding needing to chat otherwise LWL as become my 2nd family because talking with my hubby makes me feel like a tape recorder at times...i lost all my friends years back when i was diagnosed with epilepsy, i got married in my late 20s that was the most horrible nightmare anyone could live mental and physical abuse then i met my hubby now ste but regarding family i have cousins etc who never have bothered with me, both my parents are dead, i have one sister living in spain god knows where and a younger sister 7miles away also diagnosed with Lupus very early this year and more or less is living in denial and won't join the site and i never hear from her and if i do she's very argumentive which i can do without because of stress.

We're both in the same situation but i have my hubby and the saying goes "Nobody lives for ever" refering to my hubby and if i was on my own i'm limited with usage with walk etc as Lupus and sjogren's as really took me down in 12mths alone.

((A large hug your way)) Terri :) xxx

These stories are very familiar to me. With regards to losimg services, contact ur utility companies and lupus.org. They have programs that can help u financially.

I'm sorry you are having this problem. I could have written it myself except I can't work now. I have had to change my whole lifestyle; lower income and all that entails. You can't make someone care but it's hard not to be bitter. My family stays away because they know they can't rely on me financially anymore. I do have my cats and 2 small dogs and I'm thankful I can still afford to take care of them properly. I know nothing I have said is really helpful but please believe there are others with same situation. I pray alot!!! You are well loved in this community and and understood.

Hugs,

Mary

Good morning, Lone Wolf,

Although LWL is now my favorite site, I have visited other sites for Lupus sufferers and believe me, this is an unfortunate theme through all. It has taken almost a year for my diagnosis, although I have spent weeks in the hospital with what I now know where other issues caused by my lupus (pnuemonia, stroke). As we were waiting for the results of my tests (my lupus and RA indicators were neg on blood tests) my parents and brother thought probable cancer or something else terminal. It was a shock when I told them the diagnosis and I heard "Oh, well there are support groups for that" as if it wasn't a serious, debilitating disease. The worst was my 17 y.o. son who lives with my ex-husband who said "Oh, you just want everyone to feel sorry for you". We've not spoken since. I also have stage 4 nephritis and my doc says I have about a year before I hit stage 5 (ESRF).

My biggest blessing is my husband, our 1st anniversary is on Jan 8 and we have been together for nearly 7 years. When we met I could do so much that I can no longer do, but he says that love doesn't come with conditions.

I talk to those that ask, explain to those that are ignorant, and ignore those that would cause me more pain. My circle has gotten smaller, but those still in it are true.

This site has been a blessing as well, as I know my husband has got to be tired of me being tired, although he doesn't complain. He did his own research when I was diagnosed and I think that was the best thing he could have done for both of us. I forward articles to my family to help them understand. I have found, through my own personal experience, that if it isn't coming from me it doesn't sound like whining.

On the days when I am overwhelmed with stress, pain and all of the other things that go with this terrible disease, I share on LWL and I always get positive feedback and unconditional support. We may not be close to you, physically but there is ALWAYS someone here to be your sounding board on those days. I am no longer able to work so the isolation feels even more prevelant at times, but the wonders of the internet allow me to always be in contact if that is what I choose that day.

Biggest of hugs...you are not alone.

DeAnne

Sorry to hear you are going through this. Yes I think many of us experience this. I have learned that it takes much more than blood for someone to be considered a relative. I have had lupus for over 20 years and been made fun of treated badly because of it by those people. I also learned to heal means surrounding myself with good, positive people. My best advice for you is to find your passion - art, crafts, music, writing or something you love. Maybe something you never tried before and have always admired. Join a group. Sometimes it will be hard getting there being ill but when you find the right one you will drag yourself there. I know that from experience. Lupus led me to my art and I am having the time of my life getting in shows I never thought possible. I have a close group of friends who are more sisters, aunts, etc. than many of my relatives will ever be. When you are with them try to forget even for a moment about being ill and enjoy the craft. Eventually you can share with them and you will be surprised at the offers of kindness and help you will receive. Please try this. It has totally changed my world. I know longer have the desire to have any contact with mean relatives. I have so many other people who care about me and support me that I just do not need them. Remember it might take a few groups and trying different things before you find something you truly enjoy with all your heart. It will change your world. Please drop me a note and let me know how it goes.

Hello DeAnne,

Our stories are so very much alike reagrding other people and how you can turn to LWL for that extra support because even though our hubby's understand everyone can only take so much in one day but it's lovely he's there to support you fully.

"Congratulations" for the 8th Jan also and i hope it continues for many years to come.

Love Terri :) xxx

whathappensinvegas said:

Good morning, Lone Wolf,

Although LWL is now my favorite site, I have visited other sites for Lupus sufferers and believe me, this is an unfortunate theme through all. It has taken almost a year for my diagnosis, although I have spent weeks in the hospital with what I now know where other issues caused by my lupus (pnuemonia, stroke). As we were waiting for the results of my tests (my lupus and RA indicators were neg on blood tests) my parents and brother thought probable cancer or something else terminal. It was a shock when I told them the diagnosis and I heard "Oh, well there are support groups for that" as if it wasn't a serious, debilitating disease. The worst was my 17 y.o. son who lives with my ex-husband who said "Oh, you just want everyone to feel sorry for you". We've not spoken since. I also have stage 4 nephritis and my doc says I have about a year before I hit stage 5 (ESRF).

My biggest blessing is my husband, our 1st anniversary is on Jan 8 and we have been together for nearly 7 years. When we met I could do so much that I can no longer do, but he says that love doesn't come with conditions.

I talk to those that ask, explain to those that are ignorant, and ignore those that would cause me more pain. My circle has gotten smaller, but those still in it are true.

This site has been a blessing as well, as I know my husband has got to be tired of me being tired, although he doesn't complain. He did his own research when I was diagnosed and I think that was the best thing he could have done for both of us. I forward articles to my family to help them understand. I have found, through my own personal experience, that if it isn't coming from me it doesn't sound like whining.

On the days when I am overwhelmed with stress, pain and all of the other things that go with this terrible disease, I share on LWL and I always get positive feedback and unconditional support. We may not be close to you, physically but there is ALWAYS someone here to be your sounding board on those days. I am no longer able to work so the isolation feels even more prevelant at times, but the wonders of the internet allow me to always be in contact if that is what I choose that day.

Biggest of hugs...you are not alone.

DeAnne

Dear Lone Wolf,

I hear you and i know how much harder it is during the holiday season when every where you look is the families celebrating and all are so full of joy blah blah! It sure makes it hard on those who do not have families or like my cousins who just lost their father who they loved greatly.

I think you should be extremely proud of all you have accomplished with out ever asking for assistance from them, either in physical help or money! You know how many people would instead have turned to being very negative people feeling sorry for themselves, many turn to drinking or drugs to dull such painful feelings, especially this time of year. Suicide rates go up this time of year because how alone so many people feel! I think having disease just enhances it!

You instead, have continued to keep working despite it being extremely hard on you! I wish you did not allow them to abuse you in any way...physically or verbally. Since you really do not want them in your lives it sounds like, you might consider a restraining order if they continue to physically hurt you. Any Women's Center could help you to get one of these or have other advice about how to deal with that kind of abuse. I am really sorry that they purposely try to hurt you. It sounds more like, you did well in school, i bet and they barely made it so they are jealous because even with you disease you still have accomplished more than they been able!!

Do you hear that?!! YOU, with all your physical problems have accomplished more in your life!!

You should be so proud and I sincerely hope you are of yourself! I also know that it does not help with pain of being alone and not really having any family. Especially this time of year where every where you look and read about family traditions many are now doing and will be doing. It hurts a great deal to those of us who do not have family for what ever reason.

You might try and do a volunteer group, but be very honest about how sick you are so they can give you something simple. Maybe only help out for half hour to hour on Christmas Eve and Christmas day at place serving meals. You could sit and chop veggies but you will be surrounded by so many people appreciating any help you can give at this time of year!

You will become part of their family and even down the road, they might be helping you! Of if there is another way you like to volunteer, at animal shelter, with Children..i do non profit for children who are going to court due to abuse. I just spend few hours per month and than I report to the Judge about how the child feels etc about going to court. Best is, all the kids are just so happy to have someone to spend time with them that is nice...that days i have to cancel since i was sick they do not care....or if i say..we need to do something relaxing, easy on me..since they are happy to draw, do art, or go to movie..even just read books together.

My point is...you sound like a wonderful person...just that you are like me and find it so hard to ask for help, i get it!! IT is like pulling teeth for me. My neighbors have come and removed snow when they see i have not got to in few days...they now know that means i am too sick to do it.

My doctor who started a free program for people with out insurance has had some of them come over and help me out with snow or things just too hard for me to do by myself though i have often tried lol! I just did it after Thanksgiving...flu shot made go in flare...i was depressed i could not make it to my uncle's funeral so like every sat, work in my yard instead of walking dogs. I over did it, got way too sick etc....just now i can walk dogs almost full hour. That is it for day! So i am stubborn like you!! I bet you are excellent worker at your job too even on days you feel horrible!

in my family....my older sister is only one who has not seen me sick...so she tends to think my mom exaggerates her worries about me. Yes it bothers me, that she would driving to see her son and had to go to medium size city that was hour below me. I offered so many times for them to meet me down there and have just cup of coffee...dinner if they have the time. I was lonely and just going through a horrible time. Not once did they have time...not once in over 2 yrs My brother had already died from auto immune disease that is very much same as mine...when he died she was great for a few months but slowly her walls came back up.

Most of bad problems in my family are due to my father and relatives on his side...so that is what has poison a lot of people. Shame of what it was...and fights between them. I was very close to 1 cousin on that side.. i use to tutor her for learning problems and i have feeling she still holds on to that shame since all kids in her school teased her. I never did, i loved her! She was year older(we lived town apart) and we were best summer buddies...but i went on despite my disease and got a great job that paid well. She due to living in small town plus she had very hard time learning anything new was stuck in hard work and poor paying jobs. I love to have her in my life...and have reached out but she never does back.

Have you ever heard about how they say, when we died, we will be able to feel what it was like for those in our lives, their pain and love....and same is true for them when it is their time?

I wish we all could now, i think it would stop so many misunderstandings,the shame so many people feel and all the love for others than they have no idea that love it there.

I say get a cat or dog....they always love you...are always happy to see you and if you do get mad at them even if it just because you are frustrated...they always make up with you! just petting them calms people down...and they say we stay healthier Plus my dogs have made me keep moving on days when i sick or just was depressed and giving into 'poor me' side. Once i got out..even just for 15 minutes walk...they had so much fun, i can not help but to feel better enjoy the beauty around me plus greatly loved be it from my dogs, or 'friends' i made both critters and people out walking my dogs.

I hear you and here you are not alone. I often have felt like you and often still do. Working helps with that much more than you realize so try to keep working especially if you like your job! If not try to find one while still working that you do. I wish we lived near so all people like us could meet and help one another in person! So please know you are not alone...many of us have no families to help or spend holidays. I hope it helps to know we understand and in your feelings you are not alone! i am sorry i write such long messages...my quirk lol! ;-)

Tez_20,

Thank you so much for the happy wishes on our anniversary. I have decided, and actually many years ago, that to surround myself with doomsayers and fair weather friends was a time suck and although my circle is VERY small, I have found so many wonderful people on this site.

You are very lucky to have a husband that is supportive...that whole "in sickness and in health" seems to go out the window in a lesser man. We are not weak women and do not deserve weak men. We did not ask for this, but there it is. We are women first, disease sufferers second. I try to make sure that I don't allow the disease to define me, although we all know that is easier said than done. Sometimes just getting dressed in the day is a triumph.

I have found that the only person I can count on for my happiness is me...don't get me wrong I do my share of self-pity and crying into my pillow. However, I been incredibly lucky to have found a partner that is willing to learn. You cannot teach someone who refuses to learn. Again, a time suck :-).

Lucky you! Continued good health (or as good as it can be) and positive attitude.

Hugs,

DeAnne

Tez_20 said:

Hello DeAnne,

Our stories are so very much alike reagrding other people and how you can turn to LWL for that extra support because even though our hubby's understand everyone can only take so much in one day but it's lovely he's there to support you fully.

"Congratulations" for the 8th Jan also and i hope it continues for many years to come.

Love Terri :) xxx

whathappensinvegas said:

Good morning, Lone Wolf,

Although LWL is now my favorite site, I have visited other sites for Lupus sufferers and believe me, this is an unfortunate theme through all. It has taken almost a year for my diagnosis, although I have spent weeks in the hospital with what I now know where other issues caused by my lupus (pnuemonia, stroke). As we were waiting for the results of my tests (my lupus and RA indicators were neg on blood tests) my parents and brother thought probable cancer or something else terminal. It was a shock when I told them the diagnosis and I heard "Oh, well there are support groups for that" as if it wasn't a serious, debilitating disease. The worst was my 17 y.o. son who lives with my ex-husband who said "Oh, you just want everyone to feel sorry for you". We've not spoken since. I also have stage 4 nephritis and my doc says I have about a year before I hit stage 5 (ESRF).

My biggest blessing is my husband, our 1st anniversary is on Jan 8 and we have been together for nearly 7 years. When we met I could do so much that I can no longer do, but he says that love doesn't come with conditions.

I talk to those that ask, explain to those that are ignorant, and ignore those that would cause me more pain. My circle has gotten smaller, but those still in it are true.

This site has been a blessing as well, as I know my husband has got to be tired of me being tired, although he doesn't complain. He did his own research when I was diagnosed and I think that was the best thing he could have done for both of us. I forward articles to my family to help them understand. I have found, through my own personal experience, that if it isn't coming from me it doesn't sound like whining.

On the days when I am overwhelmed with stress, pain and all of the other things that go with this terrible disease, I share on LWL and I always get positive feedback and unconditional support. We may not be close to you, physically but there is ALWAYS someone here to be your sounding board on those days. I am no longer able to work so the isolation feels even more prevelant at times, but the wonders of the internet allow me to always be in contact if that is what I choose that day.

Biggest of hugs...you are not alone.

DeAnne

I am overwhelmed and humbled by all your comments. I am just checking in now after a day of struggling thru chores before the brutal work week starts. Right now i am feeling very sick, both pain & fatigue and nauseous as all get out from the plaquenil and my bad stomach. i have not been strong enough to shower in two days and i am trying to muster up to get in the shower in a few minutes when i know i feel more sure that i will not be in danger of collapsing. Maybe i will lug out the shower chair to be safe.

I feel terrible for all of you who are similarly suffering, but am so comforted that i am not alone in these experiences. I have so much to say in response, but it is way past my bedtime and i am in bad shape, so i will check in when i can with more feedback. Thank you, all you dear souls. My cat is my little alarm clock letting me know it is time to get my backside in gear and head toward bed. More later, you wonderful souls…bless you.

Hello DeAnne,

Your welcome andhow you've nearly been married 7yrs years me and ste are the same but in total been together for 11yrs...when i was first attending my dermo appointments and i told him about the lupus he did'nt believe it was that bad...so i told him i wanted him at the next appointment and since then he's been to everyone, he's sat there and let me chat and do what i've had to then spoken up afterwards and like your hubby done alot of research himself since but he's been through alot with me with seizures / paralasis in general aload and is always worrying.

Even though you have a small world of friends that's still nice to me those who are ignorant they're best being forgotten plus i quite agree about not letting the disease beat us but there is days when it feels like i'm going soft with it but it's all down to willpower and carrying on mentally strong minded.

DeAnne i just love your strong determination and it's the only way of beating the leach we carry.

Love & hugs to you Terri xxx

whathappensinvegas said:

Tez_20,

Thank you so much for the happy wishes on our anniversary. I have decided, and actually many years ago, that to surround myself with doomsayers and fair weather friends was a time suck and although my circle is VERY small, I have found so many wonderful people on this site.

You are very lucky to have a husband that is supportive...that whole "in sickness and in health" seems to go out the window in a lesser man. We are not weak women and do not deserve weak men. We did not ask for this, but there it is. We are women first, disease sufferers second. I try to make sure that I don't allow the disease to define me, although we all know that is easier said than done. Sometimes just getting dressed in the day is a triumph.

I have found that the only person I can count on for my happiness is me...don't get me wrong I do my share of self-pity and crying into my pillow. However, I been incredibly lucky to have found a partner that is willing to learn. You cannot teach someone who refuses to learn. Again, a time suck :-).

Lucky you! Continued good health (or as good as it can be) and positive attitude.

Hugs,

DeAnne

Tez_20 said:

Hello DeAnne,

Our stories are so very much alike reagrding other people and how you can turn to LWL for that extra support because even though our hubby's understand everyone can only take so much in one day but it's lovely he's there to support you fully.

"Congratulations" for the 8th Jan also and i hope it continues for many years to come.

Love Terri :) xxx

whathappensinvegas said:

Good morning, Lone Wolf,

Although LWL is now my favorite site, I have visited other sites for Lupus sufferers and believe me, this is an unfortunate theme through all. It has taken almost a year for my diagnosis, although I have spent weeks in the hospital with what I now know where other issues caused by my lupus (pnuemonia, stroke). As we were waiting for the results of my tests (my lupus and RA indicators were neg on blood tests) my parents and brother thought probable cancer or something else terminal. It was a shock when I told them the diagnosis and I heard "Oh, well there are support groups for that" as if it wasn't a serious, debilitating disease. The worst was my 17 y.o. son who lives with my ex-husband who said "Oh, you just want everyone to feel sorry for you". We've not spoken since. I also have stage 4 nephritis and my doc says I have about a year before I hit stage 5 (ESRF).

My biggest blessing is my husband, our 1st anniversary is on Jan 8 and we have been together for nearly 7 years. When we met I could do so much that I can no longer do, but he says that love doesn't come with conditions.

I talk to those that ask, explain to those that are ignorant, and ignore those that would cause me more pain. My circle has gotten smaller, but those still in it are true.

This site has been a blessing as well, as I know my husband has got to be tired of me being tired, although he doesn't complain. He did his own research when I was diagnosed and I think that was the best thing he could have done for both of us. I forward articles to my family to help them understand. I have found, through my own personal experience, that if it isn't coming from me it doesn't sound like whining.

On the days when I am overwhelmed with stress, pain and all of the other things that go with this terrible disease, I share on LWL and I always get positive feedback and unconditional support. We may not be close to you, physically but there is ALWAYS someone here to be your sounding board on those days. I am no longer able to work so the isolation feels even more prevelant at times, but the wonders of the internet allow me to always be in contact if that is what I choose that day.

Biggest of hugs...you are not alone.

DeAnne

Hello Lone Wolf,

When doing chores i really hope your pacing your body at the rate your body can go besides taking breaks in between as this is so important to we and regarding your plaquenil...i truly advise taking it at night time before bed which i was advised as your sleeping the side affects off and mine soon stopped.

I do hope you used the shower chair when showering and on some issues that need doing it's like trial and error to do them....you'll never be alone experiencing lupus and you have us 7days weekly for help and guidance with it.

I hope you rest well and all my love Terri :) xxx

Lone Wolf said:

I am overwhelmed and humbled by all your comments. I am just checking in now after a day of struggling thru chores before the brutal work week starts. Right now i am feeling very sick, both pain & fatigue and nauseous as all get out from the plaquenil and my bad stomach. i have not been strong enough to shower in two days and i am trying to muster up to get in the shower in a few minutes when i know i feel more sure that i will not be in danger of collapsing. Maybe i will lug out the shower chair to be safe.

I feel terrible for all of you who are similarly suffering, but am so comforted that i am not alone in these experiences. I have so much to say in response, but it is way past my bedtime and i am in bad shape, so i will check in when i can with more feedback. Thank you, all you dear souls. My cat is my little alarm clock letting me know it is time to get my backside in gear and head toward bed. More later, you wonderful souls...bless you.

i understand this. this might sound harsh, but i would focus on who IS there to support and care for you- that's my definition of family. i've cut off ties w/those i'm related to that have approached me like your family has. you aren't alone in your feelings. you deserve support and understanding like everyone else. my rheumy says we have to be a tad selfish and look out for us. if a situation is creating stress and you don't have to be around it, either limit the contact or stop it. you know what stress does to us. i pray and would be happy to pray for you. if you need to vent, you can msg me. i admire your tenacity to keep going. i understand how hard it is. but remember: a) we understand how you feel here b) you are so worth it and c)take care of you first. i hope you feel better than you are asap. sending hugs!

take care,

vicky

I think that it is great that you were able to do that. Not everyone can and it does not make either of you wrong or right. Maybe in time, those who cannot let go, will or even better maybe those who never got it and are abusive will get it by seeing her example. We just never know.

I do agree that we must take care of ourselves and for most women that goes against our nature to put our needs ahead of those we love. Many of us would do anything to help those we love even at expense of our health.

I always thought the positive side of me getting lupus was that if i do too much, no matter if it is for myself or others, i get at first just kind nauseated feeling. If i keep pushing it than my body just gives out so i do not have choice since it stops on it's own. In it's own way, my body has taught me to take better care of myself, really listen to my internal positive self. Not the negative one that says since we are sick and cannot work etc..i am useless...that voice just ends up making me sick so i had to learn to let it go.

I still though hang on to hope for those that did not give me support will eventually or understand that even though i am not giving of myself as i once did that i love them just as much if not more. I have come to realize that 99% of stuff that others do if it is negative has nothing to do with us but how they feel about themselves. They must learn to love themselves. It comes to that really, that no matter if we are sick or not, all of us must learn to love ourselves not in selfish way but in the best way, acceptance of who we are with all our limits as flawed human beings.

just plug away and constantly keep trying to be better human beings as long as we live.

Terrie,

Sounds like if they got all of us together in a room we could kick some serious doubting BUTT!

It sounds like you have a wonderful husband that is willing to learn about something that even those of us that suffer from this disease don't understand.

I was a special education teacher in San Diego for years and I think because of that experience I try to look at the "can do" part of a person rather than the "can't do". Yes, there are certainly days that this disease just kicks my butt (I barely remember our trip to Salt Lake for Thanksgiving), I also try to find the positive in those situations. Nothing is EVER a re-run on TV if you can't remember it, right? My husband is really good at not starting sentences with "Remember...?" whatever the subject because, duh, I obviously don't if I am asking.

Sounds like you have a wonderful grasp on what makes you tired and what makes you able to do more.

As women I think it is just hard-wired into us to try to do everything because for so many of us there was a time when we could. I think fighting ourselves is our biggest battle. Even though my diagnosis was recent, I knew something was wrong. Numerous hospital stays were a clue. For me I think admitting that I was unable to do certain things on certain days was my biggest challenge. Now if I am having a bad day, I tell my husband and leave it at that.

I hate that so many of us spend so much time having to rationalize the way we feel.

Anytime you want to just vent (and who doesn't occaisionally) just email me :=)

DeAnne

Tez_20 said:

Hello DeAnne,

Your welcome andhow you've nearly been married 7yrs years me and ste are the same but in total been together for 11yrs...when i was first attending my dermo appointments and i told him about the lupus he did'nt believe it was that bad...so i told him i wanted him at the next appointment and since then he's been to everyone, he's sat there and let me chat and do what i've had to then spoken up afterwards and like your hubby done alot of research himself since but he's been through alot with me with seizures / paralasis in general aload and is always worrying.

Even though you have a small world of friends that's still nice to me those who are ignorant they're best being forgotten plus i quite agree about not letting the disease beat us but there is days when it feels like i'm going soft with it but it's all down to willpower and carrying on mentally strong minded.

DeAnne i just love your strong determination and it's the only way of beating the leach we carry.

Love & hugs to you Terri xxx

whathappensinvegas said:

Tez_20,

Thank you so much for the happy wishes on our anniversary. I have decided, and actually many years ago, that to surround myself with doomsayers and fair weather friends was a time suck and although my circle is VERY small, I have found so many wonderful people on this site.

You are very lucky to have a husband that is supportive...that whole "in sickness and in health" seems to go out the window in a lesser man. We are not weak women and do not deserve weak men. We did not ask for this, but there it is. We are women first, disease sufferers second. I try to make sure that I don't allow the disease to define me, although we all know that is easier said than done. Sometimes just getting dressed in the day is a triumph.

I have found that the only person I can count on for my happiness is me...don't get me wrong I do my share of self-pity and crying into my pillow. However, I been incredibly lucky to have found a partner that is willing to learn. You cannot teach someone who refuses to learn. Again, a time suck :-).

Lucky you! Continued good health (or as good as it can be) and positive attitude.

Hugs,

DeAnne

Tez_20 said:

Hello DeAnne,

Our stories are so very much alike reagrding other people and how you can turn to LWL for that extra support because even though our hubby's understand everyone can only take so much in one day but it's lovely he's there to support you fully.

"Congratulations" for the 8th Jan also and i hope it continues for many years to come.

Love Terri :) xxx

whathappensinvegas said:

Good morning, Lone Wolf,

Although LWL is now my favorite site, I have visited other sites for Lupus sufferers and believe me, this is an unfortunate theme through all. It has taken almost a year for my diagnosis, although I have spent weeks in the hospital with what I now know where other issues caused by my lupus (pnuemonia, stroke). As we were waiting for the results of my tests (my lupus and RA indicators were neg on blood tests) my parents and brother thought probable cancer or something else terminal. It was a shock when I told them the diagnosis and I heard "Oh, well there are support groups for that" as if it wasn't a serious, debilitating disease. The worst was my 17 y.o. son who lives with my ex-husband who said "Oh, you just want everyone to feel sorry for you". We've not spoken since. I also have stage 4 nephritis and my doc says I have about a year before I hit stage 5 (ESRF).

My biggest blessing is my husband, our 1st anniversary is on Jan 8 and we have been together for nearly 7 years. When we met I could do so much that I can no longer do, but he says that love doesn't come with conditions.

I talk to those that ask, explain to those that are ignorant, and ignore those that would cause me more pain. My circle has gotten smaller, but those still in it are true.

This site has been a blessing as well, as I know my husband has got to be tired of me being tired, although he doesn't complain. He did his own research when I was diagnosed and I think that was the best thing he could have done for both of us. I forward articles to my family to help them understand. I have found, through my own personal experience, that if it isn't coming from me it doesn't sound like whining.

On the days when I am overwhelmed with stress, pain and all of the other things that go with this terrible disease, I share on LWL and I always get positive feedback and unconditional support. We may not be close to you, physically but there is ALWAYS someone here to be your sounding board on those days. I am no longer able to work so the isolation feels even more prevelant at times, but the wonders of the internet allow me to always be in contact if that is what I choose that day.

Biggest of hugs...you are not alone.

DeAnne

Wow, you are really having a rough time! I am so sorry to hear this. I am completely disabled by Lupus, have been so for a number of years now. So, I do understand, and I know there are many people in this forum who do understand. Feel free to talk to all of us here. I really want to send kudos to you for working full time! wow, that is incredible! I was working part time, when I could go in, but the BOD on the company changed, and they wanted me out of there. I was just shy by about 8 months of qualifying for SSDI. So, I had to wait a couple years to get SS. Life is sometimes a bummer, but this website is for people who have common problems in life. So, just say what you need to when you need to. We are here.

Hello DeAnne,

I'm starting afresh mate...as our novel was getting to long.lol

I know how you feel about kicking some butts...with this lot it can get you down put a large majority of the time there need to be positivity.

Well listen to this...my legs have been painful for a good while and before i saw my rheumo 2wks back..i woke one morning as ste suffers from insomina bad and he said i was looking upabout your legs lastnight it's circulation being cut off and what did th rheumo say the same besides me having DVT causing me troule with broken blood vessels...he knows alot what goes on with members and sometimes looks at the discussion while passing.

That's it your thinking positive in people because of your past and what you did which is lovely and you can show that across alos when talking with people and they get the vibes from it.

Well i'm forgetful like yourself, if i make a drink and ask ste if he wants one i get a short distance and i'm asking again i feel like i'm issing a parott on my shoulder for some things but i get annoyed with it bad because of how it's slowed me down to what i used to be besides strength.

Well with A1 Diseases over lapping autoimmune diseases there's an hell of alot going on, i've studied on reading about my conditions and at first i found it hard but i can at least say 60% out of an 100% a large majority of the time i know what symptom is springing from what...all it takes is just trying to over ride your suffering as much as you can when things are occuring and studying your body also..it takes some doing but you can get there.

Well how you can tell your hubby i'm having a bad day and leave it at that...i wished i could with ste it's the ins and outs of what's haopening and what i think makes it worse me having seizures and other problems besides he's gone through alot with me where another bloke would have walked.

Same here mate for if you want to let lose with your tongue.lol

You take it easy and all my love Terri angel in clouds blowing a kiss emoticon

Yes, Terri

I believe we could both be closet authors :). As to just telling my husband I am having a bad day I leave it up to him to ask at that point, as sometimes I forget that he may also have had a bad day. I think that is a great foundation for marriage and one I am lucky enough to have found. Sometimes "bad" can refer to physical but the emotional can be just as damaging. When I am feeling sorry for myself (as we all are wont to do) he will put on a chick flick and just BE with me. Sometimes that is all it takes.

I think the mistake some of us make is putting the disease first. I have lost so much of who and what I was that I refuse to let any more go. I have an EVIL ex husband that I believe does nothing more than sit around and think up ways to make my life miserable. It's those times when I have to put things in perspective and realize that he doesn't deserve the room in my mind. That goes for all of the other negative people we run into with this "leach" as you called it.

I am so happy to have made the connection with you, friend.

I would love to share advice and please vent to me anytime as well. If we can do it with each other perhaps it wont be so tough on our families.

Hugs and love,

DeAnne

Tez_20 said:

Hello DeAnne,

I'm starting afresh mate...as our novel was getting to long.lol

I know how you feel about kicking some butts...with this lot it can get you down put a large majority of the time there need to be positivity.

Well listen to this...my legs have been painful for a good while and before i saw my rheumo 2wks back..i woke one morning as ste suffers from insomina bad and he said i was looking upabout your legs lastnight it's circulation being cut off and what did th rheumo say the same besides me having DVT causing me troule with broken blood vessels...he knows alot what goes on with members and sometimes looks at the discussion while passing.

That's it your thinking positive in people because of your past and what you did which is lovely and you can show that across alos when talking with people and they get the vibes from it.

Well i'm forgetful like yourself, if i make a drink and ask ste if he wants one i get a short distance and i'm asking again i feel like i'm issing a parott on my shoulder for some things but i get annoyed with it bad because of how it's slowed me down to what i used to be besides strength.

Well with A1 Diseases over lapping autoimmune diseases there's an hell of alot going on, i've studied on reading about my conditions and at first i found it hard but i can at least say 60% out of an 100% a large majority of the time i know what symptom is springing from what...all it takes is just trying to over ride your suffering as much as you can when things are occuring and studying your body also..it takes some doing but you can get there.

Well how you can tell your hubby i'm having a bad day and leave it at that...i wished i could with ste it's the ins and outs of what's haopening and what i think makes it worse me having seizures and other problems besides he's gone through alot with me where another bloke would have walked.

Same here mate for if you want to let lose with your tongue.lol

You take it easy and all my love Terri angel in clouds blowing a kiss emoticon