It's been ages since I've posted. Have been reading everyone elses posts, which can be enlightening, sometimes uplifting and often heartbreaking. I was diagnosed with SLE 13 months ago. Seems more like decades ago. Since then, I have also been diagnosed with fibromyalgia, inflammatory arthritis, a hip misalignment and, most resently, arrhythmia. I know that it is extremely common for this kind of thing to occur. Autoimmune diseases are often accompanied by a lot of other issues.
How do we not give up??? Every time I think I'm starting to feel better, I get knocked back on my behind, again. I love my job, but it is extremely stressful, so I get frequent flares. When one ache stops aching, another immediately takes its place. I'm taking so many pills, with so many side effects, that I don't know if a lot of what I'm going through is because of the ailments or because of the medication.
I am 4 years away from being able to retire, with full medical benefits, but honestly don't know if I can make it that long. I don't even want to think about trying to get disability, because it's nearly impossible to get approved. My boyfriend retired a couple of months ago, and we have recently joked about running away to live in Alaska. I wasn't completely joking about it. If I didn't HAVE to have my insurance, for obvious reasons, I would do it in a hot minute. I don't want to not be a productive citizen, but am seriously beginning to doubt my resolve to stick it out for 4 years.
Sorry for the rant. I'm just so (as many of us have expressed, here) sick and tired of being sick and tired. Thanks for listening.
I've had this disease for over 20 years, I think its closer to 25-30 either way I can appreciate how your feeling, we're all in this together, ranting is a good thing thats what we are here for. I'm in my early 50's I never expected I would've had to retire at 43 because I got too sick to keep working. I'm constantly amazed at how we seem to persevere no matter what lupus throws at us, we just keep going for as long as we can.
Have you tried talking to someone in HR at your place of employment? Perhaps they can do something to help alleviate the job-related stress. What do you do? Would it be possible for them to move you to a less stressful position until it's time to retire? It seems like a real shame to give up all that you have worked for when you are so close.
In the meantime, do whatever you can to reduce your stress level. That includes using this group to "rant" :-) That's what we're here for! I'm sure that after 20 years of living with this, you already know what you need to do to reduce your stress levels, so I'm not going to give you a bunch of advice here.
Don't give up! You have been fighting this for a long time, you know that sometimes it's worse than others. Try to remember that when you get discouraged.
HI Jazmin, I definitely understand how you feel. I just added my own rant a few days ago. I think you said it right when you mentioned getting one thing under control and there is always something waiting to take its place. So frustrating for all of us. I am on a first name basis with my pharmacists as I'm sure you are as well. I think that Idioskosmos had a great idea about talking to someone at your HR dept. I am considering doing the same thing. I truly hope you find a position that works for you for the next four years. You can do it. Look how far you have come already! Hang in there. You are so close. Keep coming back and venting here. There are a lot of wonderful people that visit this site. I would be a mess without someone to vent to occasionally. I think it's a sanity issue some days. I wish you the best.
I recently got disability. Everyone says it’s impossible to get, but I got it. It did take six months, but it 's retroactive to when you apply. I found out that the lawyers in my area have an organization that will give you 2 or 3 hours free. He set me straight on what to emphasize in all the paperwork. If you qualify you can go back to work when your meds kick in ( they can take months). Also, disability qualifies you for medicare. I’ve had lupus for 27 years. There are a lot of ups and down, and life with lupus can be very unpredictable. I hope all those meds start working soon! Wishing you well.
Hang in there if you can.... 4 years seems a long time when your sick... have you talked with your boss at work. Try taking it as 1 week at a time. Are you able to rest when you get home ? I think back when I first got sick that was 46 years ago at that time nobody belived of how rotten and tired I use to feel and the pain at the end of the day and how hard it was to work 9 hours a day .... the 3 kids where young at the time one was a baby and I think they were the ones that helped me take it one day at a time . The doctors where no help at the time so I lived on Tylenol and what every I could buy across the counter at the time ... for years there were many days I would forget if I took 2 or 6 a day . So yes hang in there if you can... you have come a long way Jazmin try not to give up now.
I know exactly where you are comming from. I need 5 years for lifetime medical benefits. Have you looked into intermittent FMLA ?