this is my first actual post. and it's only because i am scared, beyond belief. i am scheduled to return to work next tues 25th. i've not had any relief in my symptoms and i've already had to advise my employer of 3 more needed days off for doc appts (no response from work on 3 more days). so far, it's been tough with work - but they are cooperating and have given me past approval of 12 weeks medical leave of absence. my hubby and i discussed our situation, if i can't/don't return to work. i carry the medical insurance and he makes just a few dollars over the amount to get assistance with our government affordable care act. i have already been denied SSI/SSDI because of low work credits (can't be resolved with attorney). it is getting overwhelming, physically, mentally, financially and to top it all off, i feel like a huge and unnecessary burden on my family. HOW and WHAT do i tell them to help them understand???? i'm know as the Hugs, Smiles & Giggles girl....i want to be that again. thanks for allowing me to vent. i hope i didn't label myself as a whinner.....F.R.O.G.S (fully. rely. on. God's. strength)....feather.
I wish I had an answer for you…sorry I can’t offer advice. Just wanted to let you know that I have added you to my prayer list. Try not to be too hard on yourself
I don’t understand your it can’t be resolvedwith an aattorney that is what si is for did your doctor send all of the paperwork can’t u appeal I know 10th of people who have been approved how old are u
Ask god to show you a path…there is another way…there is help out there…drs. can write letters …your notes are good too…keep talking to us…in gods love…blessings…
It can be so disheartening to try to explain, so it’s best to start working on your own self-acceptance and save the explanations for only those who truly care and are ready to hear you. Ann A. has authored a lot on this topic and is in general a greatly helpful leader in this community…
One thing I wanted to call out in your post was mention of being an “unnecessary” burden… The burden is necessary to bear because YOU are necessary! Those who won’t help share the weight may not be necessary or fit to be in your life. You might be surprised who’s willing to help or listen from among friends and community, and you will certainly be shocked by how much the people who are “supposed” to care about you and your troubled just… Don’t. Or do but can’t get it and give up easily.
I strongly recommend, to everyone, but especially those who are stuck in the harder-to-bear stretches of this illness, the book “How to Be Sick: A Buddhist-inspired guide for the chronically ill and their caregivers” by Toni Bernhard. Once you finish it (a short, easy, and delightful read), you can pass it along to your “caregivers” so they can hear what it’s like, not from you. It’s amazing how much many people are more able to sympathize with a distant character sketch rather than a know person… But hey, whatever works.
I don’t mean to minimize your list of stressful real-world problems (and believe me, I know about them… I’m single, and after a year of supporting me while I was too sick to work at all, my parents decided I was an unnecessary burden and essentially cut me off to teach me the lesson that I must handle my own matters “like an adult” (I’m 26, was diagnosed and very debilitated right before my 25th birthday.) For me, it was nearly unbearable–and certainly counterproductive to recovering–trying to manage the stress of trying to literally get better with no lasting help (just what I could beg here and there), for half a year having nowhere to live (again, begging around for small stretches of accommodation without or minimal rent) and unstable finances to buy groceries. All while boiling over in resentment over how quickly my family was content to wash their hands of me (my mom and stepdad, who did help significantly for a year, albeit through many threats and complaints, were the only ones from a very large and “close” extended family that so much as lifted a finger. Many speculated behind my back about whether I was really sick or just making a fuss over nothing.) Things have stabilized now (thanks to yours truly and those who played their bit-parts after my parents turned me out), but a key piece of getting better was stress management. Particularly on the emotional side.
Every single one of the practical problems you named is a big concern, but the pain is brought on by the wrought emotions connected to them (your writing expresses it so clearly…) Keep sharing, that’s what we’re here for and we’ll never label you a complainer! We’ll just try to unveil the way out of despair 
We’ve all been there, and while it’s no fun, the societal attitude of “just be positive” is pretty insulting most of the time and marginalizes valid feelings. Mourning is appropriate (addressed in the book), yet release from the extra layer of distress brought on by the emotions is key to managing the things that trigger them (tasks and questions at hand.) There will be answers and outcomes, and the best ones will come from patience, faith, fortitude and wise action–all of which are best achieved when the extra layer of stressed feeling is peeled away. That’s what this book addresses head-on… Hope you’ll treat yourself to reading it!!
Warm wishes, you’re doing great having your hurdles identified and some options for each (or knowledge of what are not options, which is difficult but also useful information!) Hang in there!
Brynn
First of all, I do not know who told you that you were denied due to low work credits but that is faulty information. People who have never worked but have serious diseases that prevent them from working win SSDI. Did you contact Social Security and speak with them? If not please do so....but just because you have lupus does not mean you cannot work. Sure in the beginning you often need to take off time for testing but even then most tests only are hour at most so you can go to work around the testing. I would try your best to keep working as much as possible not for your employer but for yourself. It keeps your mind busy working and not worrying which just is what happens until you realize it can be a pain but a very liveable pain.
Some of the best advice from my first Rheum was to keep working as long as i possibly could and he was so very right about this! It just helps in so many ways..money the big one but also your self esteem and it keeps your mind off worrying over things you cannot do anything about and most likely just wasting time if worrying. Work also is great place to meet supportive friends but most of all the satisfaction of doing a job well done especially if you really love your job.
If it is time to go on SSDI i would suspect that your doctors would be advising this to you plus mine all assisted me in getting it when i finally had to apply for it. I waited till i was in my 50's and really wish i could i still working be working now.
Most people do not go on SSDI immediately unless they have some major organ seriously involved and even then many i know kept on working just because ...it takes your mind off things. If you are recently diagnosed, which it sounds, you really need to give yourself time to grieve plus adjust to just being told something that may affect you all your life. If you are young(20's or less) you have excellent odds that in your lifetime either they will have cure or treatment that makes it be nothing at all like now or in remission for long periods. So that is great news for you who are being now being diagnosed!
BUT mainly grieve...if you never have read about the steps of grieving and go allow yourself to go through them naturally. Do not try and rush but give each one time as it pops up. You might go into counseling with a therapist who specializes in chronically ill diseases....hear those words, chronically ill not permanently or fatal...you might go in remission next week and get your doctors all confused on what you have lol!!
But i seriously, try to go back to work if you are only missing a entire day for one doctor visit?! Maybe you must travel far? But if in same town etc...so only miss hour or so...go back to work...it will help you. Taking time off when you are not that sick..well better to save it for when you really are plus shows your employer you are going to not let this get in the way as little as possible. Especially if this is a job you love...do not risk it...though they cannot fire you for being sick under ADA(american disability act).
You might speak to your doctor about a counselor that they recommend who can help you understand what is normal about working and how you feel etc. Plus help with grief as well. Some rheum are now having therapist as part of their team realizing especially newly diagnosed benefit greatly from having a person to speak with who knows the ropes and can help them realize what is normal feelings emotionally as well as physically. I wish more were doing this..seems more are pushing us through like cattle...i use to spend a hour with my first rheum just him examining me plus discussing what i should expect, what not to worry, what to worry about and call if this or that happens. It greatly benefited me. Now if they spend 15 minutes with a patient is long since they booked only 10!
I also suggest you join a local lupus support group....having people who have had it for years plus gone through what you will be and having them to call and text with will be a huge asset! Lupus Foundation of American has local groups you might check their site, you local newspaper or even in yellow pages...or free papers where people put announcements.
I am so sorry that you are so stressed...it will get better i promise. Also if you do keep working...just buy anything with idea that you might have to stop working. My husband and I did that and when i did have to quit working due to health, well financially we were okay. You can use your income for groceries plus savings...if your work belongs to that program where you figure out in beginning of the year health costs, doctor co pays, prescriptions, dentist etc...it is tax free so you save on your payments. i am tired ...sorry cannot think of what it is called right now.
But right now...try to work and grieve...journaling really has always helped me..be it with art or just writing. But you need to grieve if you just were diagnosed...like stress of death when you are told such news...so be kind to yourself. Feel free to ask your doctor questions about work...they are there to help you keep working.
As to treatment not yet helping, some take a few months or up to 6 months to kick in and help fully...but i really think a lot of how you feel might be due to stress of having a new chronic illness. so be gentle, do what helps you handle stress.
good luck...it will get better. sorry so long...i just feel so bad for new people..i remember how you are terrified of all the possible life changes..now they know so much more..they can mange it much better. It will be okay.
I don't know which country you are from, but, it appears you may need to find a part time job or ask your employer if they can provide you with part time work, telecommuting and other job options. I had a very similar situation, except, I did not stop working for 12 weeks. I took 1/2 days for doctor's appointments, underwent very aggressive medication therapy only taking one day off of work at a time and applied for ADA accommodation to legally have a new schedule for me to work. I did not have anyone else at home to lean on financially, so not working was not an option. If you have exhausted all options, then maybe a part time business working in a flower shop or something low impact would help for the financial. Its sounds like your family and job are really supportive, that is great! But, sometimes, we just have to "play through the pain" sort of speak, so we do remain viable members of society and able to provide for our family.
The flower shop suggestion, is because that is my dream, I love flowers as you can tell by my icon. Please don't become offended.
Dearest Feather, I am truly so very sorry for the situation that you find yourself in. Do you have a good Rheumatologist, and primary care doctor? I was wondering if either of them could write something to your employer, explaining your limitations. Perhaps working half days, or being able to do some work at home, or being allowed a place to rest for a short time, during working hours. I found, when I was first diagnosed with SLE, that there is a lot of information and insight with the Lupus Now magazine . It doesn’t come out often, but has helped me in the past. It is published by the Lupus Foundation of America, Inc. I don’t know if this has helped at all, just know you are not alone.
thank you all, for the replies of support, encouragement and advise. i truly appreciate it and wish you all the best with your situations and dealing with lupus. i've had ct scan, echo-cardiogram, carotid artery ultrasound, chest xrays, blood work, 48 hr heart monitor and currently on 30 day heart monitor. have been given no medication (think i'd rather try nature methods) for relief of my symptoms. i still have more bad days than good days...i hate the ones where i feel like i'm drunk...when i don't even consume alcohol. my PCP is very good and understands this disease (i'd complained to my previous PCP, for years, with these same symptoms, other than the memory/cognitive issues, those are newish)...she never made a connection or ran the right test. glad i switched to my current PCP. i have appts with rheumatologist, neurologist and cardiologist, scheduled in the next three weeks. my PCP is also asking my employer for more time off, for me to get a chance to see these specialist and get some kind of care plan in place, that will give me some relief. think we may consider classifying me as disabled (lupus is a qualifying disease) so i can have the protection of the ADA. not sure what that will do, but it's a thought.
i am 53 yrs young, part time job as a walking secretary (don't get to sit down and employees must use stairs/not allowed to use elevators) within a hospital, and married for 27 yrs. my hubby listened to me read a bit about lupus and is now becoming more understanding. i wouldn't be so worried about not working, if i wasn't responsible for our familes medical insurance. being part time and after premiums and taxes are taken out of my paycheck, i bring home about $50 a week, and that is used to buy gas for me to get to work and back. so i'm basically working for the (not so good) medical insurance. i've feel like there is a lot i could do from home and have mentioned that to employer, but they haven't acknowledged that request or idea. still trying to find answers for that problem. hubby said not to worry about it, we'd figure it out and make it somehow. he's also been cooking and doing laundry, dishes and more, on many, many days...he's actually better at it, than i ever was..lol. i still feel like a burden...eventually, i'm hoping that will change.
THANKS AGAIN! you've given me a boost, helped me with your kind and caring words and let me know, i'm not alone. so i'll continue this journey with hope and prayers for all of you, myself, those close to us and our medical teams. take care and God bless - Feather
Be patient with your family and friends, SLE is hard for even the doctor’s to fully understand, it will take time for others. Be open and honest, and read what you can about. Lupus. The Mayo Web site has information, plus this support group should help you with communication. Will pray for you.
My prayers for comfort and strength are with you....you are not a burden to anyone....take one day at a time...one moment at a time!
Lori
Hi Feather,
I completely understand how you feel. It could have been me you're writing about - and I'm here to tell you - you will get through this. Have you thought about any accommodations that you may need at work to help you? The last year I worked, they branded me an abuser of the doctor's visit policy. My supervisor was on my case daily, and then I would see him joke it up with co-workers while they stood around, not working and talking,talking,talking. I could not sneeze, and he would say something. This was when I was first diagnosed, and it was one of the hottest summers, and I was out in the heat working. I had good insurance, and carried it for the family as well as you. I had a ruptured tibial tendon in my foot, and had surgery, and was off work for 6 months. When I was ready to return, they said they didn't have anything I could do with my restrictions, and fired me. 6 months later, I have a new job, in an office, with climate control and I can get up and stretch when I need to, I can sit when I need to.
I was under-employed at the previous job, but too tired after working to job search. I'm a firm believer that God does for us, what we can't do for ourselves. I do have a complaint against my former employer, and the investigator asked me what outcome I wanted to see from this? I was blank, I said I didn't really know..... She asked if I wanted my job back? Really? Hell no!