I'm Dottie and I have a friend with Lupus. I was so glad to read your question as it's something I never thought about. I have seen what you're looking for and I have a website for you to check out. I believe they have something that might help you. It's a mail order catalog and I've already checked that they do ship outside the US.
Astrid, you were a nurse, a teacher, a dancer and a musician...how wonderful!
what cool experiences. what was your favorite?
astrid40 said:
Hi there Natalie, i know what you mean, i have trouble doing anything physical now, i used to be a dance teacher a long time ago, and i used to take part in triathlons. So having Lupus has made me a physical wreck now, At first i found it abit hard to accept, but now i find other things i can sit and do to make me feel abit happier about the situation. My feet and ankles get swollen as well, so i have to buy the comfiest pair of shoes i can find. I find the flip flops that have the toe piece really uncomfy for me, but the other types that have the bar across them, are not too bad, i did have a really comfy pair of those, but they have worn out now, i hope i can find another pair as in the summer i wore them everywhere. I hate wearing socks, i think socks are awful. But as we have cold winters over here i have to wear them. As soon as any sign of good weather, i have the socks off, and i am so relieved that i dont have to wear them anymore. I bought some of these socks that dont have the elasticated bit round the ankle, they are so lovely, they arent restrictive like the other ones are. I havent seen any more of those though, so i only have a few pairs. If i see them again i will get a few more pairs as it makes such a difference when you feet swell, hehe. Anyway bye for now, take care, love and hugs Astrid40xoxox
Hi USAGURL, It is hard to admit you need help with personal things. I remember when things got too hard for me, i felt so frustrated plus embarrassed. I used to have these carers come in, in the mornings to help me wash and dress, but they didnt understand the Lupus, they kept telling me i needed to motivate myself, it didnt matter how many times i told them i had enough motivation for an army and that the mind was willing, its the body thats not, they just didnt listen. This was a good few years back now, so i gave up on having them, as i felt as though i was being bullied unnneccessarily. I now have a great carer who is really understanding, she is off to Uni now though to do a full degree in Nursing, so i dont see her as much. Now though Social Services have finally seen that i need whats known as a P/A (Personal Assistant), rather than just a carer. A carer usually just helps with things like washing and dressing, and not alot else is put on the care plan, but a P/A usually can help with most things, i am so pleased they have decided i need some more help, as i have been finding it hard coping. I have been waiting for a long time for them to organise it all though, its all still in the process, so hopefully maybe in the next month or so, things will be finally put into place, everything takes so long to get done over here as far as Social Services are concerned. My husband has been doing alot of extra hours to help pay for the extras i need, i have now filled in the forms for the disability benefits, but that can also take over a month to come when they make their decision. I do know exactly how you feel. I used to be really athletic, and take part in triathlons, and teach dance, Ballet, Latin American/Ballroom, so when i initially started to get this bad, it was such a shock, and i had to try and come to terms with it, although i dont think anyone comes to terms with it, we just learn to live with it, and find other things we can enjoy, that dont take up alot of energy. Anyway its nice to talk to you, take care, look after yourself, love and hugs Astrid40xoxo
USAGURL said:
Goldie,
It was very hard for me to accept that I needed help dressing. My care-giver had to go back to his own life after 1.5 years of taking care of me after my hip replacelment with complications.
Besides an immune complex, including Lupus, I have osteaporosis and had the hip replacement (four surgies.)
1. I see that you've found out the about stocking aid. Does it also help with socks? If not, these are also available at medical supply, hospitals, etc. If you're handy some you can make yourself.
2. Getting the right shoes is key. Some good brands of shoes that I recommend (you can find these online to buy or find a retailer.) Online has a bigger selection, especially at the brand store. Also, these are an investment. You may end up with 2-3 pairs of great looking and comfortable shoes, not 10 and they last until you're completely tired of them.
Merrel
Miphisto (sp?
Keen
Dansko (this is at the bottom of my list, but they do make some classy mules that might work)
Costco, in the winter, has some great calf-high boots lined with sheepskin as well as some mule-type slippers.
Hope this helps,
When I was working they called me the "hyphenator." I edited PR and ad copy.
Hi Janice, thankyou for your lovely message. I really enjoyed the nursing as i am a real peoples person. I also enjoyed the teaching too. I used to teach piano and english. I used to really enjoy seeing people manage to accomplish and achieve whatever they had set out to do. It was always so wonderful when someone got their exam results through to find they had passed with distinction. I also used to love to nurse, as its not a job its a vocation over here, as the pay is so low. Teaching pays alot more than nursing does, which is silly really. I think i enjoyed all of them equally, as they all have their good points. I do love children, and love to teach them new things. I also had some adult pupils, i remember this one man who just wanted to learn how to play Happy Birthday on the piano for his mothers eightieth birthday, once he had done that, he wanted to carry on which was so nice, as he was in his sixties. Anyone can learn to play an instrument at any age if they want to. I think alot of people think its actually harder than it is. I was explaining to a friend of ours the other week who had been given a piano for free for his children and he wanted to learn to read music, when i eeplained the basis of the lines and the space notes, he said maybe he would be able to do it after all. Obviously there is alot more to it than that, but if you break things down in small pieces it makes things alot easier. Anyway thankyou for your question, take care, bye for now, love and hugs Astrid40xoxo
Hi Janice, i dont know if you have anything like that over where you live, but its well worth asking, they might well have, or offer some funds to pay for a personal assistant. Over here, they do a thing called Direct Payments, where they put the funding into your own bank account and the person recieving the help has to keep a record of who they pay etc for what. A company does all the pay for you, all you have to do is keep the receipts. So its worth asking whether they have a scheme called direct payments. The Social Services come out and assess you, after a telephone consultation, and then they fill in all the forms for you, and then you wait to see if it all comes through in this country, it does take a while. And to be honest i wasnt holding out much hope, as there have been so many cutbacks here, and only the really needy get the help. Although i knew i needed the help really badly, i wasnt sure if they would seee it that way, as there are alot of people who are worse off. Fortunately for me though, they could see i am really struggling at the moment, with the most basic of things. So they sent me a letter telling me how much and how many hours a week they were prepared to help out with, which was such a relief. I cant wait until everything is sorted out and put into place. It does take a while, as they have alot of stuff they need to do before they can put it in place. I had to open a separate bank account for the money to go into, it cant just go into your own, as they need to see what goes out etc. Anyway as i said its worth asking about, as they dont advertise these things, as they know they would have an influx of people asking for it, and alot who werent even in need of it. I wish you luck with it, i do hope you get some help, as i know how much you struggle with things. Anyway bye for now, take care, love and hugs Astrid40xoxo
how sweet! the man who only wanted to play happy birthday for his mother (((((sweet)))))))---i like that story so much i will put it in my journal as one of the things i am so grateful for. i love when we can see the ripple effect of love...he loved his mother, you loved teaching to him, his mother's heart was touched no doubt, and i'm sure she told everyone what a sweet gesture her son made, and now it has touched me too...and i bet it will go on and on. crazy-love
Hi Janice, thankyou for your lovely message. I really enjoyed the nursing as i am a real peoples person. I also enjoyed the teaching too. I used to teach piano and english. I used to really enjoy seeing people manage to accomplish and achieve whatever they had set out to do. It was always so wonderful when someone got their exam results through to find they had passed with distinction. I also used to love to nurse, as its not a job its a vocation over here, as the pay is so low. Teaching pays alot more than nursing does, which is silly really. I think i enjoyed all of them equally, as they all have their good points. I do love children, and love to teach them new things. I also had some adult pupils, i remember this one man who just wanted to learn how to play Happy Birthday on the piano for his mothers eightieth birthday, once he had done that, he wanted to carry on which was so nice, as he was in his sixties. Anyone can learn to play an instrument at any age if they want to. I think alot of people think its actually harder than it is. I was explaining to a friend of ours the other week who had been given a piano for free for his children and he wanted to learn to read music, when i eeplained the basis of the lines and the space notes, he said maybe he would be able to do it after all. Obviously there is alot more to it than that, but if you break things down in small pieces it makes things alot easier. Anyway thankyou for your question, take care, bye for now, love and hugs Astrid40xoxo
Hi Janice, thankyou for your lovely reply. I am pleased you liked the story about the man who wanted to learn how to play Happy Birthday for his mother, i remember when he came to me, i thought it was a lovely thing for him to do. He said his mother had always wanted him to learn the piano when he was smaller but he wasnt interested, so he just wanted to show her that he could do it. I will tell you something else now, that i am really proud of, i have a little girl come over to stay with me sometimes. Years ago when she was little, her father asked me if i would be a female role model to her, as her mother wasnt around anymore. The dad was a friend of my husbands to begin with, and he said as soon as he met me and became good friends, he knew i would be the perfect person for her to have as a role model and to discuss the things that were to do with anything female, that perhaps she wouldnt want to speak to him about. I feel really honoured, i have been through alot of changes with her. I started having her from when she was a baby still, and now she is nine years old, her birthday is on February the 19th, so she will be ten soon. She phones me every weekend, if i havent spoken to her before. And i try to be well enough for her to come over and stay the weekend when she wants to. She understands though that i might not be well enough for her to come over sometimes. Her mother didnt want her, and this has had an impact on her life. I think its such a shame, as i have seen all the wonderful changes that her real mother hasnt. I have been there through all the growing pains etc. And she does really think of me as another mum, she knows rationally though i am not her mum. So although i wasnt able to have children in the end due to having chemo, i have been blessed in the fact i have been given a chance to look after a beautiful little girl when i am well enough, her photo is on the photos albums. She is a very clever little thing, interested in astrology, science, and music. So when i am not feeling very well i think of all the good things that have happened in my life, and know although things are tough, there are rainbows amongst the rainy storm clouds, and know how lucky i have been, and to have also been blessed in having a good husband and my little dog harald too. Take care, look after yourself, love and hugs Astrid40xoxo
Hi there all, i am so glad that there are places where you can buy some things to make life a little easier, its not easy for any of us. There are so many things that can be of help. I have one of these can and jar openers, which is easy to operate, so when you have a lid say on a bottle thats abit stiff, you dont have to stand there straining to open it. I havent got a lot of strength in my wrists and forearms anymore, so all these things help. I also found some pen grips helpful. You can slip them over a pen and they are easy to grip. They aslo do a thing to help with buttons and zips if you have trouble with those. I expect you will see all these things when you look through the catalogue's. I had to buy myself a tablet box, and none of the ones i saw were big enough, as i have to take quite alot of medication, and so i couldnt fit it in the average size boxes, so i went online and found this company that do boxes called Medimax which are a little bit bigger on the individual size boxes, so i can just about fit everything in that i need now. Also some of you might be entitled to a visit from an Occupational Therapist, someone who comes to your home and works out solutions for what you have problems doing. And some of the stuff they can issue you with for free, not alot now. But i do know they can issue people with grab handles, and get someone to put them up. And a trolley with wheels, so you can just wheel whatever you need to from the kitchen into your lounge, sitting room. Its worth asking. When i first got ill i didnt like having to ask for things, but now it has become so essential, that i dont have much choice in the matter anymore. And i am sure there are others here who feel the same, so next time you see your doctor ask him about having an Occupational Therapist assessment. Bye for now, take care everyone, love and hugs Astrid40xoxo
