im glad you posted this
Hi siskiyousis, thankyou for your reply. It is so hard for you, especially as you have to pay more for medical bills, in the Uk, we pay higher taxes and a thing called national insurance, which is quite high depends on how much you are earning, and how much you have worked before you got sick. If we are on benefits we are asked to contribute to the national insurance to help with paying for medical bills and when we get a pension. Of course there are some people who dont bother but get everything anyway. My husband works really hard and pays over a third of his wages in tax and national insurance, its alot when he is working so hard. He jokes i am having his share of health care, if i say i feel guilty about not working and paying what used to be called the national health insurance stamp, which self employed people pay for every week. I worked really hard when i did used to work, doing four jobs in the same week most of the time, so i suppose i must of contributed a fair bit in that time, as when you do another job you pay more tax and national insurance anyway. Its worked out differently. For me as i am not allowed to drive anymore because of the epilepsy alot of the money we have goes on fares for getting to different hospitals, if my husband isnt around to take me. I walk with a frame, and have a wheelchair for the bad days, i also have an electric wheelchair too. But as you say you would rather have the help at home than be in a home with others who are the same. I dont think there are enough voluntary organisations which can help. Have you got any advice centres you can talk to who will tell you where you might be able to access things.
You are right people are afraid of anyone who is different or looks different. When i am in my wheelchair and my husband is pushing me, if i hand over the money to the shop assistant there are times when they have handed the money back to my husband assuming that i cant speak, or answer any question. One day someone said to my husband, well how is she? in this pitying voice, so my husband said i dont know, why dont you ask her? I nearly laughed but was annoyed as well. People tend to ignore you if you are in a wheelchair or abit different. I was out one day and in the wheelchair, we had gone to a car boot sale, and this women in front of me kept swinging her handbag right into my face and kicking me lifting her leg up backwards, totally unaware of what she was doing, so after about the sixth time, i kicked her back, not hard, And she said there was no need for that now was there, talking to me like i was a child, i just said no there wasnt any need, so why were you throwing your handbag into my face and kicking me, she didnt really know what to say to that, apart from sorry and she didnt realise, well she realised enough that i was there to push in front of us, and step over me, so surely she realised what she was doing. That is one thing that bugs me is when people literally step over me to get to something, if they just said excuse me if they want to get to something, i am losing my faith in human nature too. I am just so pleased i came onto this site, as it has restored some faith in people. But you are right, there are alot of people who just dont care about anyone else but themselves, especially the politicians, its the thing of "Im alright Jack, and blow everyone else" is the attitude that comes across, as they are wealthy when they go into politics, and have high salaries, they dont have to think about whether they can pay for this or that whenever, they just write a cheque when they need to, they dont have to juggle the finances. We have a politician over here who walked out of University to walk straight into politics, what life experience has he got, and how can he be the minister for health, honestly, sometimes it does make you wonder doesnt it, he must be all of 23 years old.
You are so right people who drink to excess do have a problem, And i have nothing against people with mental health problems, i actually feel for them, but when its bought upon themselves like that man, then thats what they call self inflicted isnt it? We dont have a choice with what we go through. Sadly there is alot of selfishness in the world now, and there is this thing where alot of people only care about themselves which has really shocked me in the last few years, i think i have been far too naive about things in the past. Now i am more of a realist. And if something good happens then i am pleasantly surprised. Its like with the disability benefits, i dont know but why is it that alcholics and drug addicts get disability benefit, its not helping them to stop having their addictions, its just funding it more. I understand they might need help for one reason or another, but surely this isnt going to encourage someone who has an addiction to get help, if they can afford to feed their addiction, maybe i am being too harsh. And when i hear people who really need a Social Worker cant get one, but the alcaholics and drug takers have them who dont really want them, it doesnt make sense does it? You are right though in order to get help, we have to prove we really really need it, and its degrading to have to almost beg for help. I just got to a point where i knew i was really going under, my place is a mess, its not filthy as my husband does alot, but he works too and is getting over tired and it worries me he will end up collapsing as he has done before. I know its hard loree, but keep trying, if you can. I know its hard to find help, i have been trying for years, it wasnt just like that i got help. When i first asked a good few years back, i wasnt able to get the help i wanted, only what they said i could have, and it didnt work. They kept saying i needed to be more motivated, and you know yourself, we have enough motivation for an army, its the body thats not willing. So we gave up in thinking we could get any help, this has just been abit of luck, it has been five months since i applied, so everything takes its time. They delay and delay in the hope that Social Services wont have to pay out in the end with their services, just to make sure that person really needs the help. Its really not easy. And if i am right i think that Rachel said she already knew the Social Worker she has, as a friend beforehand which would help, i may be wrong though. So keep persevering, no matter how hard it gets otherwise you wont get any help, its a battlefield out there as they say. I am sorry that things arent different to this, and that there arent enough services to go round, and thats why half the time people get refused first time round. Anyway i am thinking of you, if you ever want to have a vent about anything please feel free, i have been there too, and its good to get things off our chest. Take care friend, look after yourself, love and huge hugs Astrid40xoxo
siskiyousis said:
Thanks Astrid...i am on disability....
but that just gives me money per month plus medical care....that is not free....i still pay couple hundred dollars per month out of my disability check for it!!!
But what they do not supply....unless i was in wheel chair...and needed like half way house..where people who are disabled live together and there are people there to help clean, feed etc them.
I need that kind of help here in my house.....not feed..just some help with yard and house work.
I have called around and having a hard time trying to find any help.
I just read one of your posts .....about your neighbor with learning disabilities who is lonely. I do not know why people are so afraid of those that are different. I was lucky enough in high school to have a class helping teach mentally disabled... Mongoloid and other issues to learn how to dress, cook and clean for them selves. So i learned how special they all are!
I try hard to be friendly to all! Do not judge others by how they dress, speak, etc. Like i said...my husband who is into politics...actually history ...a lot more than I, but i try to keep informed. One day on NPR or BBC radio they were speaking about health care and attitudes of politicians, and some of the wealthy. Which was..that if you cannot work you do not deserve to live. I turned to my husband and said...you really think people are that callous? He than had me read some statements...as much as I liked to believe in the Good in all...he was right. Their statements made it very clear...that if you had money to support yourself while sick that was okay....but those that lose their jobs or cannot work should just be left to die.
Than i saw that statement man made to your husband. I feel like shooting him up with all your morphine and putting us out of misery of his sick attitude!! lol! i would not really....but to get drunk makes you useful? !! Sorry...i consider people who must drink to that excess as addicts ....who have just as serious health problem as i do.
What i was trying to ask .....how Rachel got a social worker. You do not get a social worker here in the US if you go on disability. That is not how they do it. We talk to about 3 people ...than you get case worker who's entire existence i believe is to try and prove you are not sick!! lol!!
But thanks..i love your answers and wisdom! loree
astrid40 said:Hi siskiyousis, thankyou for your post, i am not sure how things work where you live. But, in this country you refer yourself, you ring up a special number where they first interview you over the phone for an hour while you tell them what your problems and difficulties are with you health etc. Then a couple of months later you get a visit from a worker from the adult care team, and they go through everything with you, and try and help you if they can, and if someone definately needs it, which i am sure you do. There are lots of people who are missed with their disabilities because they arent told how to access help the proper way, maybe you could ask your doctor or ER for more information on how to apply for help with your disability, and how to get hold of a social worker, or at least care worker to talk to, to begin with. It does take time over here, its been four months since i have started the process for help. And they are just about getting round to things now, but at the moment it is partly my fault, as i am in bed at the moment with the MRSA and so they havent been able to do alot more, but you would think this would be the time when i needed them most, although my husband did take some time off to help me. There is no shame in needing help, and financial help as well, we are all different, and we all have varying degrees of disability, and i dont know about you, most of the week i am so tired out, and in pain, i cant do alot for myself. I really hope you manage to find out how you get the social worker and help at home with things, even if its just to help you with some of the jobs at home to make life easier. Take care, bye for now, love and hugs Astrid40xoxo
siskiyousis said:I am not sure how you got a Social Worker? I never got one when i went through disability. I got more like people who were sick and tired of speaking with sick people and felt their attitude's were we all lie about how sick we are.
My best friend's husband was a social worker here in Ca but he worked with people who had mental issues, limitations and they lived in half way house or group setting. People who were foil on their head to keep voices out.
So like other people how did you get one? I just need help with house and yard work. Plus snow removal.
Astrid....i had year like that where i lost so many people i loved. It so hard....mine were not from death ..at least some of the them were not...it was distance and not understanding that my disease turned itself up few notches from when they knew me. Plus i always have tried my best to act 'okay' when around others....so unless you really know me....you rarely get to see the sick side of me.
But if you could say how you got a social worker? It almost sounds like you went to hospital and got what is often called a patients advocate...if any of you are using hospitals to get your medical treatment...almost all or think all are required to have patients advocate. They assist you with your insurance plus make sure you are getting correct medical care and what it all means plus assistance with getting to and from hospitals..legal aid..they do a lot. I am sure it depends on hospital how much they provide.
I agree..having someone with you...especially a child...because you have to brave in front of them is great way to keep your mind off yourself and on them. I just enjoy kids period.
Hi Ann A., Thankyou for your lovely kind comments about me. I try to be understanding, but you know from what i have told you, i have been through a hell of a lot for my 44 years already, and what doesnt kill you makes you stronger as they say. It also makes us more aware and more understanding too. It has made me old before my time i am sure of that, especially with the Lupus and all the things i have that go with it. But my whole life experience and the people that were good to me throughout my life, are what have made me the person i am today. I hope i can help in small ways, i am not perfect, nobody is, but i am there for anyone if they would like a chat, we all need each other on here dont we? And we all understand and feel for each other with what we are all going through, as we are all so very similar, and yet not at times. Anyway thanks again Ann, hope you arent too bad at the moment, take care, love and hugs Astrid40xoxo
Ann A. said:
Astrid you are a youngster. I love it. My oldest kid is 45! But he is not ad sweet as you!
astrid40 said:Hi there, You are right Ann, that is amazing to be married for that long, not many marriages can survive for one reason or another nowadays, and its harder still when there is illness in the partnership. I have only been married 8 years, although been together over 11 years which is good, maybe i will get to 40 years eh, hehe. I am 44, i was 44 in December although i do feel and look alot older on some days for sure. Anyway take care, bye for now, love and hugs Astrid40xoxo
Ann A. said:Ann thinks that you will be beautiful when you have been married for 50 years! And give your husband a hello.
Rachel Simpkins said:Astrid that is just beautiful,your a beautiful person,I will work harder on what I can and cannot do,housecleaner,well after 25 years of marriage,then so be it....my picture is current I'm 43,I know I look young LOL,but I know somebody said I didn't look old enough to be married 25 yrs haha it was either Ann or JaniceLOL
Hi Janice, I think Dave and i were both shocked by what this ignorant man said about me, i was really upset by it for a while, then i thought what does he know, he is an alcaholic even if he wont admit it. When he gets home from work he drinks about 8 cans of beer with 2 two litre bottles of cider, and thats half his problem why he goes round insulting people, as no-one is any good apart from him in his eyes, he likes to be in control and his wife who i did used to spend some time with, he treated her really badly and was a wife beater, but she never left him. We used to have her stay round here after he had beat her, and i think thats what its really about, as she had someone and somewhere to to if she needed to. My husband also used to help give her lifts places, as she doesnt have a car, she never learnt to drive, because he didnt want her to, another way of controlling her. Anyway he must hate it now, as her mother has moved down here from London, so she is out all the time helping her, so he must be feeling very neglected. I dont know if he is hitting her anymore, as i decided i would back off now she has her mother, as it was getting me down as well as stressing me out, as she wouldnt actually do anything about it, and kept going back to him, you just cant help some people sometimes, I know it was her decision, but after coming to me for help at least six times then what do you do, i was there for her, but she didnt understand i needed to go to bed, as she was awake i had to be awake. I prayed she would have a happier life, i think she must go to her mothers now if anything upsets her which is better for her really. But to say that was totally disgusting, considering he works as a Psychiatric nurse with the elderly, does he feel like that about his elderly patients i wonder who are on lots of meds eh? Ah well he isnt worth getting upset about, just shows though there are some really nasty and really really ignorant people in this world. Anyway my dear friend, thankfully i have some really lovely friends in my life who do understand what i go through, like yourself. Take care, love and hugs Astrid40xoxo
janice said:
Oh Astrid, I was shocked by what your husband's friend said about you!! I am so sorry. I know your husband must have felt like he'd been slapped in the face with a comment like that one. Grrr. It makes me so mad. There are certainly insensitive and cruel people in the world.
your friendship means a lot to me too and it hurts to think of you going through all that pain and worry.
I trust God.
I trust God.
I trust God. And I know he would never make us endure an illness, or any kind of pain unless he knew he would be right there with the consolation we so desperately need.
You know, I say, "I will pray for you" so often and I do pray, but I have been thinking about what it means to say I will pray for you.
I am beginning to understand what I need to do to pray the kind of prayers God designed me to pray. I will talk more about it in a soon-to-be-written blog.
Until then, I just want to thank you for your friendship and prayers, and for sharing this crazy Lupus journey with me
http://youtu.be/CnzmPrsLXn8
astrid40 said:Hi Janice, you have worked hard all you life in lots of ways. It isnt easy to accept we cant do what we used to. It took me years to accept i would never do this and that again, unless there was some miracle or i had a remission period which sadly i havent. But like you have said there are lots of things that you are doing, and i think i am too in a way. As i am sure you are like me, and if someone was needing to talk when you were out, you wouldnt say sorry i am busy if you do have the time, unlike so many other people out there who are very self absorbed at times. I have said about the lady that stops me when i am out, and although i am not really feeling up to sitting and talking, i think i would rather she had something that made her day than me walk away thinking she was going to be lonely. I know she is lonely, as she does invite nearly everyone she meets as a friend, round to see her. Not many people will sit with her though, as she does have some learning difficulties, but if people took the time just to get to know her, she has a fantastic sense of humour, and is going through an awful lot herself, she was telling me last time a lot of her problems are down to nerves and she has been put on some tranquillizers, so if i can sit down with her for half an hour, thats good. I think you probably do more than you think, you have always been there for me when i have needed a good friend, so have others on LWL which is so wonderful, i cant even put into words how i feel when i have yours and others support. I would love to be able to crochet, and knit properly. I can knit and purl, is it, but i cant cast off very well, i end up with this lopsided bit of knitting so i gave that one up years ago. Just like you though Janice i worked so hard, that when i look back now feeling the way i do now, i wonder how on earth i did all that, and some of it was really physical work like yourself. I never had the children though sadly, through the chemo making me infertile, but i have said about the little girl i was blessed to be asked to help with from when she was a baby, she is ten next week.
My dear friend you are definately not a drain on society. My husband spent an evening with a friend of mine's husband and he got really drunk, as they were out watching a band, anyway on the way back he said to my husband, "your wife should take all her morphine, and rid us of herself, as she is a right drain on society!". Imagine how hard it was for my husband to control his temper, he just ignored him for the rest of the journey home, and dropped him off thinking what a you know what. Yes there are some people that might think we are a drain on society, but those people are few and far between thankfully. You really mustnt punish yourself for something that was out of your control. We all on LWL cant help having Lupus and there is no way we can CONTROL what goes on with it, sorry had to add the CONTROL bit, hehe. You know what i mean though, we are not superwomen now, we have to try and just do our best, and thats what we are doing. And your music is beautiful, and the other music you sent me has really helped me, so you are helping me and alot of others to get through this awful time. You are such a special friend, and a special person, so please please dont think that you are a drain on society, it is hard to accept the benefits, i do feel bad about it too, but like i said we dont have any choice as we cant afford to get to all the appointments and things without it, and all the extra things we need to get to help with the disability we have now. My husband has been working extra hours to help with paying for the things i need, until my disability comes through, and i know he is so tired for which i feel guilty, but i am hoping it wont be too long before he can have a break from the long hours. I dont know what else i can say really, except to reitterate how lovely a person you are, and you are doing everything you can. Take care, look after yourself, speak soon, love and huge hugs Astridxoxoxo
janice said:I am on disability and it has been both a source of relief bc I am able to see docs and take the meds they prescribe, but a source of deep shame as well. I am also very ashamed that I can't work anymore---I got my first job (aside from digging potatoes or peanuts from the field to help earn money for food...and then we hoed weeds in the soy bean fields too...and all that was from so early an age I didn't count age yet. Then at 16 I started working and didn't stop except for childbirth. The years that I was a full time stay at home mom I worked harder than any job I'd ever had lol. I started getting weekend jobs when my husband was home to stay with the kids just to get to take a lunch break lol seriously! I was the mother of 4 and the "koolaid mom" and all the neighbors kids were always at my house to play with my kids.
anyway, then when the kids were grown I was a yoga teacher and home-health aide. But I finally had to stop doing that too and focus on the health crisis that I had been trying so hard to take care of while working too. So when I was not working I still tried to work by working for the good of my community---even if all I could do was pray, or knit or crochet or make a song or some little something to lift someone's spirits---like chicken soup or whatever.
Now I am in therapy and one of the reasons I’m there is that I feel so guilty and like such a drain on society---i honestly feel like if I were not on disability the planet would be better off: there would be no more global warming, no excess of violence, no shocking imbalances between the haves and haves-not and all kinds of irrational thoughts like those.
So I go to God because my life is ultimately up to Him and say, "God, I don't want to be a burden; I don't want to take food/medicine/ or breathing room away from a single soul. And I feel so useless now that I can't work. What would you have me do?"
Today He answered. (I am paraphrasing) He said “Remember that just as the body has many parts, all are vital to the whole being here. And, Yes, I did say that if a person doesn't work then that person does not eat, but I also said take care of the widows and orphans, for people who need what you have, give them even more than they have asked for."
He said, "Just because you are not earning a wage and paying taxes on what you have does not mean that you are not doing good work; works of mercy and prayer and study and compassion and fellowship and songs and gifts that lift a person's spirit are all very important to the well being of my people as a whole. And some “jobs” cannot even be measures as having any value from a human standpoint, but from here…things look different. Let me put it another way, he said, if you are crocheting a veil and miss on little tiny stitch the integrity of the veil is compromised, and can very easily become unraveled beyond repair if it is not notice, and tended to, repairing it and supporting it as it needs. And further more; you cannot know how important the daisy in the field is to the whole of creation, but I can tell you that honey bee would not be happy if it or the flower or any of her sisters were deemed worthless just because they can't be used for ...fuel or building materials. Do you see what I mean?" He said.
I didn't understand it so clearly until today. I sighed.
He knows what he created each and everyone of us for and He knows the bigger picture. He commanded us to love one another, to love God, and to love our neighbor as ourselves; he didn't say don't love the poor or the sick just because we need more help than the rich. He said blessed are the poor for they shall inherit the earth.
St Benedict's Rule states that work is important to out soul and I agree. He said even if a person in invalid they can be given some small work to do for they own good as well as the for the good of the community, and not because they better work or get kicked to skid row, but that they work because it gladdens the heart and balances a life of prayer.
wow. I feel much better.
Some would call writing work, and it is work, and I love doing it even though I don't make a wage for it.
wow. Thank you for opening this conversation; I needed it to work out these thought that have plagued me for years. Thank you for the work of taking a stand for what you think and for standing strong enough that I could lean against you argument while I tried to figure out what I think and feel as well.
Thank God for the daisy and the bee and for all the wonderful people here, together with me, all of working to glorify thee.