LUPUS UK
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Struggling Lupie Looking for Friends

Struggling Lupie Looking for Friends

Hello,

Yes I am from the USA, no I do not like it at the moment but it is what it is. I just started a job that after one shift I had to tell them that I couldn't work the job. 1. Due to standing 6-8 hours per day and being in all sorts of varying weather. My Lupus has sought revenge so to speak from Saturday's Job Shift and it stinks.

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Hello LifeAsALupie,

Sorry to hear of your current struggles, but glad to see you here. I have found this forum to be a great help, with lots of knowledgeable and friendly people, so I bet you will find some support here too. Keep in touch! Mx

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Hi Life as Lupie!

Welcome to the forum :) I am from the UK but if you need any advice or just someone to talk to I am around :) We also have a facebook group

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Hi I'm sorry to hear about your job. Maybe a better fit is around the corner. Keep chatting on here and you will find a lot of support.

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Yes, it is Tuesday and I'm supposed to go back to work on Saturday and Sunday. But I spoke with my mum about what I had experienced and she said for once this is one job that I wouldn't mind if you didn't go back at all. Why they scheduled you for 9 hours is beyond me with them knowing you cannot work many hours. It is opening weekend on the 29th and 30th and I should probably go in but as I type my anxiety is building about how busy it will be. It will not only be the Season Pass but also the General Public and it's going to be Crazy.

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Hello, I'm in the US also, where are you and what job do you have? If you don't mind me asking, that is? It very hard doing this alone. I have family here but they don't understand. Half of the time they think I'm a hypochondriac. I'm out of work the rest of the week, I had knee surgery. So if you need someone to talk to, let me know. This is a great place, with very understanding people. Hope you are happy here.

Teresa

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My name is Theresa as well but I go by Teri. I've been doing this on my own for 11 year's. My family doesn't understand and they also work long hours as well. I am in Colorado and work at Elitch Gardens Theme and Water Park. Well I did, I decided that it wasn't the best job for me physically etc so I'm not going back. I've tried to get in touch with people there to let them know and I cannot get through to leave a message. I sent an email to one sup and they haven't called me or replied back which is very frustrating.

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Sorry you have the curse as well. It's a 9 headed hydra for sure. How can you manage financially in the states with this? It's mind blowing.

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I get disability income but it's pretty much month to month. Most go toward bills, rent etc.

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Keep looking! I've been very lucky to be able to work at home. My schedule is flexible and it helps tremendously.

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Hi I feel sorry to hear about ur job. Actually working in a theme park isnt a suitable job for us. I guess the weather is also a problem if you work outdoor. Perhaps u could find a way to work from home?

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hi there fellow lupie, it's really tough for the boss man to even understand what we really go through. i used to work as a waitress about two years ago, and i loved the job because my boss and coworkers felt like a family. around 2012, i was diagnosed with minimal change disease, which is a kidney disease and as time went by, my health started crashing.... i was feeling like i couldn't get enough sleep even though i had spent practically the whole day in bed. there were days where i felt like i was going to die, i tried to endure work, taking prednisone and a whole bunch of other medications treating my edema that the kidney disease had brought on me, literally making me 30 pounds of water in a period of only a few days (i'm serious)... well i tried pushing through until one day, i was trying to take a table's orders and i just felt like everything was going dark, i felt like i was going to faint but i couldn't breathe and i was sweaty...so i ended up in the hospital and was told i was low on magnesium, potassium and some other things, but nothing farther then that...i missed about a month of work because i couldn't even walk, yet my boss was very understanding.... fastforward to about a year after, back to the hospital except this time, i had caught pneumonia and a few other infections, my blood pressure was so high, i ended up spending about a week in the hospital... i managed to get through and i missed so much work yet my boss was so understanding...finally i just kept overlooking my health and one day i had to really think: i do love my job, but it drains me sooo much, i need another job. this was about a year after, into 2016, and i developed bronchitis, it wasn't until 2016 that i was finally diagnosed with systematic lupus.... i've been through hell and back, on point of dying... here i am about a year later, i have a new job that gives me health insurance and i take multivitamins/minerals every day, religiously, also fish oil, biotin(i lost sooo much of my thick hair :'( and i would like some of it back) i gave soda up about 4 years ago, i don't eat pork because i have noticed that it makes me sick ever since i started having problems... anyways, the list goes on... baby, it's been a rollercoaster ride, but here i am, doing alright... applying oils to my skin because its so dry, applying other creams for my rashes, which oils seem to help it, i can't be out in the sun for more then a few minutes... i miss my healthy life, but well, i have learned to accept lupus...it's taught me a lot about myself and it has given me strength to push through with college and achieving my goals, even if it's at a slower time then every one else..... much love, from a fellow lupie friend named stephany

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Hello again Teri, hope all went well with your quitting your job. I see that you wrote that you get disability. Can you tell me how you went about that. I'm having a rough go of it and any advice would be great. If it's not too private of course. Tks Teresa

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Dear 'LifeAsALupie ' (Teri)

I am so sorry you have been made to join our group of sufferers and I understand about your job - that's tough! You have already discovered that Lupus has far-reaching effects and that non-sufferers have no idea what it entails and think you are a hypochondriac just seeking sympathy, or as we Brits say "swinging the lead".

As an elderly 'Senior' with numerous other preceding complaints (major heart attack last month, but still here) I have also discovered that problems which one has already overcome years ago, like loss of balance and depth perception, are made to re-surface and are now much more difficult to overcome. As a keen walker and cyclist, I have had to sell my 5 cross country and racing bikes, I already sold my car after a previous illness and walking 100 yards can take up to a week to recover from - same with my heart attack Physio recovery exercises so I can't even reach the nearest bus stop to get downtown. With medication from previous illnesses [which I won't bore you with] I now take 18 different types of medication per day (including of course, Hydroxy . . . .etc.) and with some pills at 3 times a day it adds up to 38 pills a day. Thank goodness for our Brit. National Health Service, because some of them must cost an arm and a leg.

Hope you guys get something similar soon in the way of health support. In the meantime, I hope it helps a little to know that you are among friends,

Hang in there my friend! We all do.

Sleeping Dog [John]

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Hi John,

I just saw your post from 5 month's ago. I am terribly sorry for not replying sooner. I have found a job and so far so good. They seem to want to make it work for both side's they actually take time to listen to me.

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Hi, Teri,

I'm so glad you've found a job!, especially with someone who will listen to your point of view!

I hope this one doesn't require a lot of standing up and walking around - my own walking gets less every day, and today the rain finally stopped so I had a walk in the sunshine. My walk lasted about 50 yards. Every month it gets down to half of the previous month. my local Dr is seeing me this week on the subject of pain relief, so I might be able to walk further.

One of my pet hates is people looking at me and saying " you really DO look so well". Meaning they can't see anything wrong, so why do I make the fuss? but, then the other day I found myself saying that to somebody else [who I thought had died last year!]. You have to physically collapse in a heap in front of them before they get the picture, but on the other hand I encountered an old friend who had been having a nightmare time stuck at the airport and I said "you look absolutely Whacked out, you poor thing" and she was mortally wounded and hasn't spoken to me since! What can you do?

John

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It does require standing, i was doing fine up until a few weeks ago. Now i am dealing with extreme back pain and I'm looking to possibly put my 2 weeks in.

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