Social Worker

[system]

Im sorry im not on much, but I still care :) Been taking care of sick friend out of state and

trying to take care of myself and family...I just wanted to add, I DO have a Social Worker,

that helps me ALL THE WAY....I went thru 3 different ones until I found Julie.....

Im supposed to be matched up with a University of Michigan Dr. thru her...in Ann Arbor Mi

the Wayne State Dr. was exceptionally nice, but I was OVERWHELMED by the tests

that she was pulling, I have alot of home responsibility, and it is VERY hard to do all

those tests and not be home...My son is disabled, I do have in home worker for him,

but being a MOM I still worry...The reason I added this discussion, is because

I FINALLY found somebody who took my paperwork, bloodwork and results and is

contacting me a Dr. that matches what I have going on, due to the fact it is in

AnnArbor, I may have to have a JUNE appointment, which is ok, I need my son

to go with me so im not alone on that long ride....All my family is deceased ....

I just wanted to share how IMPORTANT a Social Worker can be, they can get you

to vent, set you up with what you need, bring you food :) Now keep in mind the First Social Worker you get you may not like...I DIDNT...I have to drive an hour away to the one I like..

Well, I figured I would post what was on my mind today....I do Pray for all of you....

[janice]

im so glad you have a social worker. I have home health nurses and it really helps.

[system]

Hi Rachel, Its really good to hear from you. You have really got your hands full at the moment, its so good that you are helping a friend, especially as you are so unwell yourself, it cant be easy to say the least. Its brilliant you have Social Worker, not many people on here have access to someone like that. I also have a Social Worker and an Occupational Therapist who has been helping me get things to help with the disability, they cant get the little things, but they can get the main things, like hand rails where they are needed. And i have just been really fortunate in getting an electric controlled hospital bed. I know what its like not to have any family left. The only ones i do have left is my grandmother who is in a care home for Alzeihmers, so she cant really do anything for me, and never really could before as she is really disabled herself. My mother and father are no longer around, my mothers sister isnt interested in helping. I never forget when Nan was abit more lucid and she said to me with my Aunties agreement that i should by now have some sort of family of my own which was really cruel, as they know how upset i was when i found out i could no longer have children a good few years ago, because of all the chemo i had been having, i had become infertile. There were no need for these comments, it did upset me at the time, but i have come to the conclusion they are and can be really insensitive. MY nan is the best one out of the two as she has tried to help me when i first got a place, and she also bought me up most of my life. The only time my Aunty and Uncle came up the hospital was when i was close to dying, so they did their bit, i supposed they think. A couple of years ago in September i lost my Grandad, dad and best friend all in the same month, one after the other within days of each other, it was really awful and seemed like a right nightmare at the time, i have been slowly getting used to it though. I was really never that close to my dad anyway, but my grandfather, and my best friend were so lovely. One blessing that did happen was i was asked to help out a friend of ours to bring up his little girl when she was a baby, the little girls mother was no longer around, so he asked me if i would help and also be her role model, which i felt it was a huge honour, and havent regretted it ever. Kira is nine now, and is an amazing and intelligent little girl. I do understand why you would want to take your son along for company on the long journey, it makes such a difference to how we feel when we have someone with us for things like that. I do hope everything goes well for you appointment. It is hard to find the right Social Worker, i remember the first one i had was awful, she was like an old school madam, and didnt really understand my needs. So its lovely that i have someone who understands what i need in the way of help, not that i will get lots of help, but anything is worth having isnt it? I dont think mine can bring me food etc, but they help us do this thing here called Direct Payments where they pay an amount of money into a separate bank account, and i buy in my own care, and they then help with whatever things i may need. I think i am getting two hours of housework as well, this doesnt sound alot when there is so much to do. I have bought in cleaners before, and that two hours goes really quickly, but as i say anything is better than nothing, and i really do appreciate anything i can get, as everyone here knows how hard it is for us to cope and manage everything. I still am on the antibiotics for the MRSA, i have an appointment on Wednesday this week for abit of a check up, and maybe more antibiotics as well, i am dreading that. But if its what i have to do to get better, i will just have to get on with it eh? Anyway you take care, look after yourself, love and hugs Astrid40xoxo

[Flutterbymare]

I am happy for you that you ave found a social worker that you are comfortable with. I would imagine all states are different but how did you go about getting a social worker ? I’ve had at home nursing care but it only lasts a certain amount and it’s after I’m released from the hospital.

[siskiyousis]

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.

[system]

Hi Rachel, i dont collect benefits for my rent and all the utility bills, but i will be getting money to pay whoever cares for me, and i will have to keep all receipts and all pay slips etc, the money can only be spent on care. I wouldnt claim it unless i really needed it, i am close to the edge with everything at the moment. I can hardly walk, and i mean hardly. When i get up i have to slowly stand up and stay where i am for ages, and as i have nearly everything that comes with the Lupus, and loads of complications lately., i am not ashamed to say i need some help. I admire your courage, but i know for me there is no way i could work, as no employer would take me on, knowing that i never know how i am going to be feeling from day to day, and most days i spend laying down. Maybe one day i will get alot better, but for now, thats just how it has to be for me. Take care, bye for now, love and hugs Astrid40xoxo

Rachel Simpkins said:

I just wanted to make VERY clear I DO NOT collect disability, because I would rather drop dead before I

have to fight Michigans system...The Social Worker is from a friend...I work ALL day on saturdays ONLY

to pay my Mortgage, 4 saturdays pays mortgage, husband helps with rest....Just doing a Saturday puts me

in bed for a few days...My Mom died of brain tumor and court said "she can work" , she was in a coma,we went back and the Judge said"your mom can work", I stood up and said my Mother is Dead your Honor....

[system]

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.

[system]

Hi Rachel, i used to be like you, really independant about things, and of course proud. You get to a point though where you have to say enough is enough, i cant manage all this anymore, its far too much for me, otherwise you will breakdown and cry about it. There have been times when i have had a good day, when i say a good day, i mean when i can stay up for a few hours. So there i am trying to do what i can in the home for the time i am up and about, but yet again by the end of it, i am in tons more pain and like you say you end up suffering more by ending up spending more time in bed than you would have done before. This is no life for us, and when you speak to someone who does understand like from an adult care agency, they are really sympathetic usually. There have been days where i have felt really down and at my wits end, but thank god i havent cracked yet. I have been really tested with alot of things recently, especially with the two lots of pneumonia which were so close to each other, and then the MRSA on top, it all wears us down when we have alot to deal with. I am at the point now where i know i need some help. So Rachel, if you need help my friend you have to ask, even if you dont want to. There are times when i have felt really useless and embarrassed about the fact i can no longer do as many things around the place, but the trouble is feeling useless and being embarrassed about it all, still isnt going to get things done, and things pile up, and then the place looks bad making me feel bad, its a vicious circle. So at the end of the day its better for us if we accept help to keep our state of mind good, as no-one likes looking at a load of things that need doing, its more stress on top of the stress we have already isnt it? You go for it, and go and see what help there is out there, sometimes there are voluntary organisations which will help with some things, its worth a try. Anyway you take care, look after yourself, love and hugs Astrid40xoxo

Rachel Simpkins said:

Astrid I'm looking into a few more options,that's good to know. I barely walk well and need house cleaner,I have large house and was told don't. Let my Pride get in the way of getting aa cleaner, I try to do everything myself but this day is coming.

[system]

Hi Rachel, i am here for you if you need to chat, its not easy having Lupus for sure. We all need a bit of help in our lives once in a while. After my husband comes in from work, i know he has probably had a really hard day, yet he comes in and makes me a drink, yet it should be the other way round. So when he is settled and been sitting for a while, i go over to him and give him a huge hug, and we all need a hug now and again dont we, so i am sending you a huge hug, and hope you get something sorted to make your life a little easier. We havent given in yet, we just need some help for now, and if things change, then brilliant, but for now accept some help for you, you deserve it and are worth it, take care, love and hugs Astridxoxox

[system]

Hi Rachel, thankyou so much for your really lovely reply. It is hard to stop doing something we have done for so many years, i am pretty stubborn at times. My husband is always telling me off for doing something round the house that i shouldnt, and says why dont i ask? And i suppose sometimes i just either forget, or just want to try and get on with it. We forget how fragile we really are sometimes, and as far as i am concerned now, there is absolutely no shame in asking for help with the right people, as the right people will respect the things you need. I have a wonderful carer now, who is at Uni at the moment so i dont see her very often now, but she still pops in occasionally when she is free to see if i am okay, perhaps every ten days or so, which is nice. Anyway good luck with everything, take care, love and hugs Astridxoxo

[janice]

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.

[system]

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.

[system]

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

[janice]

thanks Rachel

Rachel Simpkins said:

awwww Janice your a complete different story :) dont worry...Jesus Loves You and knows what you can and

cannot do. I, m only on 4 saturdays a month! im tired from that! Im crocheting like you, plus im trying to do

SOME exercises, what a joke!!! LOL, im just soooooo tired to move! We just have to thank the Lord we

are able to get up and dressed everyday ....I am TRYING to squeeze some, I mean some exercise, im just

fatiqued to no end, I do know the Useless feeling, disability or not, it dont matter when you cant move.

Janice your in my Prayers!!! Your so sweet and Jesus cares for all of us....

[siskiyousis]

Janice,

If there is anything i can stress and urge you to do....is exercise. I wrote earlier about how i need help with house and yard work. I do walk my dogs almost daily at least amount is 20 minutes but on average about an hour. Yes, i am exhausted and i hurt worse in some places ...other are better. BUT my head feels better from getting outside and in nature plus doing something positive both for my dogs as well as myself.

I also meet other walkers...some with dogs other with out just walking, biking or running...even some horseback riding and most are friendly....so some socializing is done as well which is is good.

One thing all of my favorite doctors ...or ones i thought were the smartest and cared about my life being more than just work and pain.....said for me to move. If nothing else, quit my job, but get out and move! You lose it they said if you do not so move!

If you are dog lover....walk your dog daily with you. When you begin to hurt too much, their joy can take your mind off of it. Plus, they sure appreciate it so much! Dogs get home bound just like people so they like having new area's to smell and see!!

i urge everyone to find something that makes them move...Gardening...swimming in indoor pool, cross country skiing etc...just something that get their muscles moving and being used.....bets any anti depressant drug too!

Yes i also feel useless and am drain on society. I worked from time was kid...babysitting/dog sitting etc so from elementary school. But really ...started in high school with lunch and after school job....and never stopped till my diseases just got to be too about 50. I had worked at my job at the Newspaper almost 20 years...but been giving m share of ssi since High school.

I also did not apply until my husband i separated and thought we were divorcing. He was only giving small amount for alimony. As he said...apply for disability to buy food...so i was forced into it. Was very shaming experience but i was lucky to get a really nice SSI employee ....but all the rest were jerks.

They try and make you feel that you should not be applying for it. I believe here in our society....the politicians who constantly say make fun of Health Care for all...really feel we do not deserve it. If we cannot work ..than so what if we starve and must live on the streets. I write all of them and ask what private sector job gives you lifetime health care plus pension after only few years of work?! They should give it up ...and give it to people who did work most of their life....or are legit ably sick .

Sorry pet peeve of mine!! But move Janice and others....if i can help in any way...i will just let me know how! loree

Rachel Simpkins said:

awwww Janice your a complete different story :) dont worry...Jesus Loves You and knows what you can and

cannot do. I, m only on 4 saturdays a month! im tired from that! Im crocheting like you, plus im trying to do

SOME exercises, what a joke!!! LOL, im just soooooo tired to move! We just have to thank the Lord we

are able to get up and dressed everyday ....I am TRYING to squeeze some, I mean some exercise, im just

fatiqued to no end, I do know the Useless feeling, disability or not, it dont matter when you cant move.

Janice your in my Prayers!!! Your so sweet and Jesus cares for all of us....

[janice]

Loree, thank you for your heartfelt concern--I can tell you are very sincere and want only what is best.

I had my first visit with the physical therapist today and it was such a relief to me---I know God had His hand in making sure I got the right therapist.

Her advice to me was to do absolutely nothing that further aggravates my body which is under such a vicious attack right now. Instead, she said, I am going to be doing several micro movements every hour.

I do these r.o.m. exercises for no more that 5 minutes every hour, and for at least 5 min every hour she wants me to rest with as much support as I can get--a recliner or bed and to get my feet higher than my head several times a day too.

So I set my phone alarm to ring once every hour from 12 to 5---

she said her goal for me was to absolutely not aggravate myself---to sooth and counter this hateful Lupus with gentleness- kindness and peace.

she too wants to improve my ability to keep moving, but she is more convinced that if I do these small but frequent super gentle exercises that I will be making room in my body and mind---making room for healing to occur--making room for hope.

God bless you Loree! Thank you for your response

((((!))))wow~~ I expected to be ridiculed by letting myself get this disease---which is a very irrational and completely untrue. Kindness wins. Thanks be to God.

[janice]

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.

[siskiyousis]

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.

[siskiyousis]

Janice...

You and i really need to talk together. I had such huge shameful feelings for exactly same reason ....going on disability! All my doctors for years had urged me to go on it! i finally was forced by my husband when we became separated for time...he said i had to get it or he would not pay me any more than few hundred and that was not enough for just house bills!

When i left my job.....i had been there almost 20 years....they were great and worked hard to keep me on. I just could not keep it up. I was crying on my way to and from work because i was so tired and hurt so much. But now..i even hurt more!

I should have gone to counselor ...my great one! But i felt since i was not bringing in any money that i should not cost the family any more money than i absolutely had too! It was not my husband who made me feel that way...he would have encourage it and did.

You must live in the south...picking peanuts!! One of my good friends was from Atlanta area....she moved back there after her divorce but we email regularly. I went back with her when she lived out here and really loved Georgia and the Carolina's! I love to take my husband back one year....because he is such a civil war buff...really just history period! He should have been history professor!

OOH and if you hurt.....really try baths with epsom salts....people do not believe me than they try and it and go WOW!!

I am not talking about if you are very sick...when i get bad sick..all i can do is at most maybe is take a bath...just letting the dogs out...i have to go with them since no fence. When i lived by myself ...it was horrible...not that my husband is back....he can do it thank fully!! He is sick too with his own auto immune disease!!

I have foam wedge...that i use to get my feet up higher ...both my husband and i have feet /ankle arthritis issues so swell up each time we walk around or just does when not doing well.. He gets the recliner and i use that wedge.

Another comfortable way ...was laying on floor with feet on sofa..actually feels very good. I know what your PT is doing..they just trying to keep your muscles from freezing up which is excellent.

I am talking about walking ....when you are normal sick...as stupid as that sounds lol! The only thing i do most days is walk my dogs....and fix easy meals..than i try my best to do one other chore. Laundry i can do...since just tossing...but i have house stuff broken up in to 1/2 things ea day for the week.

I know my neighbors would say along with husband before he got sick too...that on days i feel better i do way too much and than set myself back. Well...now i cannot recall last day i felt like that...where was like i could work off and on all day resting inbetween.

I use to either watch a movie or read a book. Every time commercial would come on...i do something.....or in reading a book when chapter ended...i would like vacuum my bedroom...than next chapter the next room so on and so on.. I cannot do that any more....swell up too much and just get way too fatigue.

Why i was asking about help or how she got social worker. My husband has always had depression and seems to have got extremely a lot worse...so he easily could sleep around the clock...so he is not a whole lot of help. In fact i think he had brought on more work in many ways...but other ways ...like when i am bed ridden he can help with dogs and fire wood...snow etc. So guess it is good. Just frustrating how he sleeps ....but having been bad depressed...i cannot get angry at him because it is thousand times worse than what i have..i believe. I have hope for new drug or remission or some one will come along and help me. He has no hope and i know it since i been in his shoes.

yea i meant well...i should try and remember that some people are in the bad place....and say it is not for them..well it is...so exactly how you are trying ....if it was nice weather i say do them outside so you get some vit d in you!!

BUT YOu and I must talk about our mutual shame feelings about disability etc.

I guess..in some ways i am lucky...when i do too much...my body just shuts down...i get so sick all i can do is lay by toilet or sofa with bucket....but at least it stops me before i do more damage!

You rest Janice...when you feel up to it...let me know.....i really like to talk to you about shame and what we both have done to get over it....i still feel it but not as bad. Take good care of yourself! loree

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.

[siskiyousis]

Rachel,

I can understand your anger and frustration about your Mother not receiving disability for having brain cancer!! I want to express first, how sorry I am about her death. I have know about 4/5 people who died this way and it is not an easy death. I hope you have the time to say all you needed to her/ and her to you. One..he was in his forties and could not remember that the young boys 3/5 yrs old, were his sons. He just get so angry at the noise they made. That was saddest one....weird part he did know who his wife was to the end.

But all of these people were put on disability immediately....first through state(the ones i know about) than when state ran out which was normally a year, they went on SSI, Federal Government Social Security Insurance.

If your Mother was an State worker than usually States have their own disability plan ....it is easy to know. If she did not pay into SSI on her paycheck but some state plan than explain why she try for state completely. BUT if you Mother worked enough hours paying into SSI she could actually try for both. Or could have....

Something does not add up here.....usually your Mother's Doctors and her place of employment would just send in documentation of her illness and that she would be off ...here in CA is minimum of 6 weeks. Than here..and i know states can be different but more often than not they are similar ....after a year she would go on SSI and that would be permanently.

I do not know how long ago it was she died....but you might check with her employer and Doctor what happen on their end. Or even your social worker friend....or those that help you with your son might know. I am sure you could just call state dept and ask them what was needed and what went wrong. Reason is...if it was all from state....than she could have money owed her for settlement.

Also, if your father is still alive and if she had any other children that are under 18 they should call federal SSI and apply for survivor benefits. The kids will get it until they turn 18....and not sure how long your father willl but my sister in law got when my brother died at age 34 and is still getting it ...she is 60. So really has helped her out.

Yes...if she worked only for state and never paid into it than it might not apply to her....or some other rule i do not know about but it sure would not hurt to ask...just online question even...though i think a call would be much better.

Plus...those people who are just the first line....i only had nice ones who really tried hard to help me out. I had no idea about all the benefits if your income was low enough. SO i hope you try and help your father...or siblings if they qualify.

As to collecting disability.....i never wanted to either. I think you should do like i did when I finally had not choice about it. I needed the money period. I hired someone to do all for me. Considering how sick we are....once we get to point that you must be to win....last thing you need is more stress...so apply. It is worth the 5% they take out of your settlement. SSI will give you list of people in your area.....i strongly suggest hire someone who use to work for them if one is available. That is what i did and won faster than anyone i know or even read about.

Also....personally....i would say work as long as you can even if it is only 1 day per week....it helps so much with your self esteem. I had always supported myself since i was 18. I made enough even when i was married that i could support myself even at part time hours and it made me feel proud of myself. I felt proud that i did not cave in like some other women I knew whom as soon as they got diagnosed filed. But than...i was not walking in their shoes so who knows what else was going on in their lives...my point is i am no position to judge them.

YES...i do know of a very good friend who got it....and he should not have received it. If he claims his shoulder was no longer useful...than how come he can row his fly fishing boat that holds about 8 people all day on the river?

Or he can water ski all day too.....and get this...he may have to take 1 otc motrin!! that is what made me laugh. I been in so much pain that 1 otc motrin would do nothing!!

Plus this guy..can write environmental impact reports...be science teacher..do a lot..with out any use of that shoulder.

So i agree with you totally....disability should not be abused. It is there for people who are genuinely sick....sick enough where they cannot even sit and answer phones for a living. The guy above.the reason he left his job is because it was that..or be fired and charged with assaulting another employee. He hit another employee who made him mad! Yes..i told him i think he should not have got it...and he got it first time he applied which is about unheard of now days! He was about 55 so that helped...older you are easier it is to get it.

But on the other hand, I feel enough shame as it is to have to need it. I know i should not feel shame but to always be able to support oneself than have it gone...well it is hard to deal with at least for me. Plus, with all the mean stuff politicians who are against universal health care say....I told my husband once that feel like they like us to die off since we are just a slug on society in their eyes. He said they do....look at how hard they fight it. Plus he said that some of the groups they belong to...when you read their agenda it might as well say just take us out and shoot us to end all the expense we are on society.

So like that guy said to Astrid's husband....I do not know about England...but here I do think that it is great number of people, politicians ...wealthy who do really feel we are slugs on society. I wish it was not true....but all they care about is money and profits..

I know you did not mean that way...you were frustrated...and sad about your mother. OH...legally...the Judge could not give it to your mother because she had died. I was just telling my husband your story. But he agrees....that does not mean that she may not still qualify for money while she was alive and any settlement. I Know that won't make you feel any better....but maybe the money can help those she loved that now do need it.

So i hope when time comes....you do apply for it...just have someone help you with it! Again..i am so sorry about your Mother and really hope you had the time you needed with her to say all you wished. take care...loree

I just wanted to make VERY clear I DO NOT collect disability, because I would rather drop dead before I

have to fight Michigans system...The Social Worker is from a friend...I work ALL day on saturdays ONLY

to pay my Mortgage, 4 saturdays pays mortgage, husband helps with rest....Just doing a Saturday puts me

in bed for a few days...My Mom died of brain tumor and court said "she can work" , she was in a coma,we went back and the Judge said"your mom can work", I stood up and said my Mother is Dead your Honor....