Struggling Lupie Looking for Friends

Struggling Lupie Looking for Friends


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.

13 Replies

  • 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

  • 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

  • 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.

  • 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.

  • 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.


  • 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.

  • 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.

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

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

  • 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?

  • 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 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'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

  • 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

  • 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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