What has been your "chronic illness" work experience? What has worked for you?

@ih1183

2 жыл бұрын

Lupus has been my experience and what a nightmare it has been.

@laurennicole-spooniebusine1115

2 жыл бұрын

@@ih1183 100% a nightmare. Finally figuring it out, but I had to give up my previous career because of it.

Oh my gosh yes 😭😭😭 I relate to this so much! I have lupus and am struggling so hard to stay at my full time job right now. Thank you for making me feel less alone in the struggle! ♥️

I’m 47 recently diagnosed with Lupus in Jan 2019. After 3 years work break I went back to full time work. I couldn’t afford to live and get healthy without extra money. I am single and it’s only me. I’m fortunate I am a Data Analyst so I sit for most of the day. I have an awesome employer and team culture so my work life is low stress. It’s physically difficult yet I don’t miss a day. I go for my mental health as well because I enjoy working and having a purpose. I’ve considered the working will be damaging me more long term so I monitor myself and I’m doing ok. From 22 hours per day in bed to working full time is achievable yet everyone is different.

I am a teacher and last year I started having all these horrible problems. I am being tested for Lupus. It's so hard working.

Hey lovely :-) I live in Australia and was working full-time for many years when I first started getting sick but as doctors didn't diagnose me or treat me for a long time / many years I deteriorated very quickly and am now unable to work at all and housebound which sucks as I'm only 34. I was diagnosed with rheumatoid arthritis not long after I resigned from my full-time job and I'm finally getting treatment but the damage of the illness has already been done and I am still in a lot of pain and always not feeling well due to my autoimmune disease even though supposably it's in remission even though it never feels like it is :-( I would love to find something that I could do on the side from home to make some money and to feel of worth again. I think you're amazing and you inspire me to keep trying even though my body wants to give up thank you for always saying how it is and educating people every day on autoimmune conditions I'm one of your biggest followers and fans have a lovely day from one spoonie to another

@BigAvo231

4 жыл бұрын

Chloe Mahr check Dr Joel Wallach all the answers are there. Bless fellow Aussie

I recently had to quit my job as a housekeeper in a nursing home. They know I have lupus but just kept putting more and more rooms to clean on me and my body simply couldn't take any more! Luckily I found a nice desk clerk position at a hotel, hopefully it works out.

@monkeybearmax

5 жыл бұрын

Peacemaker Wolf I hope u can rest and feel better ❤️

@peacemakerwolf8972

5 жыл бұрын

@@monkeybearmax thank you, I feel better already!!

@alexandrapimenta3737

5 жыл бұрын

I really don't understand why people don't feel pitty for the person that is sick and trying to work

@peacemakerwolf8972

5 жыл бұрын

@@alexandrapimenta3737 I would rather have a job that I can do, rather than pity. Pays better lol

When Lupus hit me, it hit hard. I jus had my son and was out on Maternity Leave. The job was something I swallowed my pride for. I had a number of schooling endeavors under my belt and years of experience in Medical field. But, I was working in a College Cafeteria at the time. Nevertheless a few weeks before I was to return, I got really sick. Chronic Fatigue was the first symptom. Then I felt like I had the flu too. Body inflammation, very low energy, and body pain after that. Nothing went away, I only got worse. My return date came and went. For another 4 months I couldn't work. I then applied for SSD. I took a month to fill the application out. I wrote every little thing that bothered me. Every single way it effected my life. Only then did I send the App in. I received a phone interview. Made sure they had all my Dr reports. I was very lucky to get approved 4-6 months later. I def miss working. My health been alil better the last 1yr and half. So I've been certified through a non profit company to be a tax preparer. Which is only 4 months out the year. It's been a blessing. I now want to find something I can do to bring another form of income in. Something not so demanding that is part time.

Hi. I’m working a full time job now and I felt the same excitement as you did, at first. I thought this new position would be less strain on my body; but it’s not. I just had a lupus flare while at work. So embarrassing for me. Unpredictable 😭It’s been 25yrs since I applied and was denied. My mom continued to push for it and I hired an attorney. The judge denied me as well. That was in 1998. I’m now inspired to start my own KZread. 💜

@Christinesobsevations

9 ай бұрын

I have CRPS and cannot work on a schedule… had to hire an attorney bec SSDI keeps denying me .

I was diagnosed with RA in 2015 and I left my full time job of 10 years soon after because my body couldn’t handle the workload. Actually, I was let go by my company because I was constantly missing work due to this illness. I now work from home. Few months ago, I also got diagnosed with Sjögren- my salivary glands are always swollen. Thanks for posting your videos! They helped a lot :)

@zaureliaip263

4 жыл бұрын

Hi @LunaMoon, I currently live with RA. Is it possible for me to contact you (via Instagram DM or other platform) and ask some questions regarding your RA experiences? Thanks very much.

I have Dermatomyositis. I worked as a nurse and even got a part-time job (3 days a week) on the day shift with adaptation for my health situation. I loved my job but It was physically draining and I was also getting worse. Now I am on permanant disability. I have been lucky to have insurance at my work.

I work as an EMT and firefighter full-time. My diagnosis is undifferentiated connective tissue disease. Every day that I come home from work I am so fatigued from my 24 hour shift. Depending on how much work I do, how much I lift, if I have to do compressions, or if I have to fight fire; my next day is full of pain and it takes the next 48 hours to recover only to go back to work the very next day. I am Phil whole heartedly the same way that I am working just to get sicker just to pay the medical bills because I’m sicker. I worked overtime over Christmas to get extra money, which was 48 hour shifts, 24 hours off work, for two weeks and I was hospitalized. And it definitely doesn’t help whatever you’re trying to conceive with the stress I put on my body, we have had two miscarriages in the past year. The last miscarriage nearly killed me.

great video. as a single parent I had no choice but to work as sick as I was, initially when I applied for disability i was denied. that was 2016. I kept working and getting sicker and sicker to the point most days I'm bedridden now. after three years I finally got approved for disability after appealing with an attorney. I was approved in January and I still haven't received my first payment. they definitely don't make it easy especially when you are under 50 with a disability nobody believes you are as sick as you say you are. it's been extremely difficult. and I've pushed my body way beyond what I should just to keep a roof over our heads.

I'm glad you've found a lifestyle that works for you. It's a great thing. I'm almost two years into my chronic illness and I still don't have a name for it. I live in Sweden so there is no insurance issue at all. Basically, each year I pay for medical stuff up until the total amount reaches about 120 $ and then everything is free (funded by the government). The same goes for paying for medication but it works a bit differently - you get different percentages off depending on how much you've paid for it up until the present time each year, up until that too is free. I work full time with law in a small company. It's a great thing for me since I can work from home if I feel like it and the hours are flexible. I also get 1 hour of "pro-health activities" off work every week that I can use to do things like taking a walk, going to the gym or getting a massage. I also get a small amount of money each year that I can use to get a gym membership, or pay for other things that promote my health. So far, working goes well for me. Over the lats two years I've learned how my body works and what I need to do to feel better. That means I'm both better and worse than I was when it all started at the same time. It sounds odd, but it's true - my main symtom is better but others have cropped up along the way. Working tires me out (Fridays are the worst) but as we near a medical solution for me I keep on hoping and I try to be optimistic.

Isn't it awful that illness and disability can have such an impact on our career/college dreams! I was kinesiology/pre-med for podiatry and just like you decided med school would be too rough on my body. Now I'm studying to become a horticulturist with the hopes of being able to grow/raise enough to where it makes sense for me to not work. This could be possible now that my fiance and I aren't in CA anymore. Cost of living in ID is low and fiance will have good benefits as a popo which I am so grateful for.

So I’m an architecture student got 2 more years to graduate, it was never easy when I was well but I was always down for the challenge I was so successful. By the end of my second year during finals I got diagnosed I couldn’t do much I was depressed because I couldn’t do my normal effort, later on I started to focus on other stuff out of my work in order to distract myself of my university work and with time I was less stressed and I built a community out of university and it started to help me feel better. Yes I get my tiring days when I have to skip the day and stay in bed but that only means I’ll watch more of your videos 😌 so yeah I’m just looking at the filled side of the cup and trying to be positive

I have Lupus and Fibromyalgia and I do a few different things for work. I'm a Flamenco Dance teacher at an arts high school, I work in retail, and I officiate ceremonies like weddings and funerals. I work six days a week. I am always exhausted and in pain. I would like to do a bit less, but I can't afford to financially and yes, a big chunk of my money goes towards my healthcare and like you, I'm getting sicker. I recently started using a cane to walk upstairs and inclines. It's tough. I feel like if I worked less I might do better, but I would still be financially strapped. It's hard to find a balance.

My chronic illness is Crohns and I am a 21yo Medstudent in Germany. Sometimes I have to take time off for surgery and recovery but other than that its all About medication, Nutrition and Mentality :) Keep up the good work. You are so Pretty :)

This has been the most frustrating problem for me. I'm only 24. I have tried to work full time twice. After about 4 months both times I couldn't do it. I was so ill a few hours into my shift every.single.day. I'm thousands of dollars in debt from medical bills. So I hear you when you say that. Right now I am working 3 days a week about 22 hours and I'm still pushing myself. My dream job is to be a nutritionist, but I haven't even been able to finish school.

For those of you applying for ssdi benefits. Please, please document your illness. Ask the ssdi representative what they need. Your medical records have to be up to date---they will not accept anything older than 6 months. Your disease has to be chronic, and disabling. Your doctor can advocate for you as well. Do NOT feel bad that you cant work regardlessof your age. Do NOT minimize your disability or you can be denied benefits. Your job is to prove you need assistance. If you have worked for at least 2 to 3 years, and paid federal income taxes you probably have accumulated some benefits regardless of your age. And you can work if you are collecting ssdi, however you cannot work full time, otherwise you would not be considered disabled "enough" you can work part time just make sure you check out what the maximum amount you can earn or you may inadvertently lose your hard won benefits. Good Luck!

I’m 34 years old. I was diagnosed December 2022. My doctor took me off work for 6 months. I just came back to work this month and I am having a hard time. I feel major fatigue, my hands hurt, and I have body aches. I’m on prednisone too so I feel overwhelmed very fast with other employees and customers. I never thought it would be like this coming back to work.

Went to college and got a phlebotomy/ lab tech job right out of college. Did it for a year and my body basically did what yours did. Now, I'm at a daycare which i love but I'm wanting to do more so now I'm going back to school for Dental Assistant. I've gone back and forth full time and part-time. But, i could never make enough part-time and pay my medical bills for lupus. Doing my research Dental Assistants make decent money and I work full time but still make enough money to pay bills

Yes sometimes you do feel like you work to keep up with the bills but do not feel ashamed in using FMLA. I was at first but am thankful It’s available. I have a great paying job with benefits and I feel a sense of relief that FMLA allows to be able to take care of my medical needs and not loose my job.

hi. I was diagnosed with lupus on 2016. I am a cook, and as you guys may understand working with a chronic illness isnt easy, from 5 day with 40+ hours i cut it down to 4 days but here and there i manage to work holidays but then also take an extra day off so i can recover from the busy days. Til now as i had been pushing myself working on busy day made me not to be able to walk for a week or so.

@cyndi9196

5 жыл бұрын

Hi, I’ve been diagnosed with Lupus and I am in kidney failure and it’s hard. I’m on FMLA to save my job cause of all the doctors appointment and incapacity. I’m a LPN work 5 days a week drive 2 hours out of my day to work, when I’m sick I push to to go to work then I get so sick I have to take off work for almost a week then push myself to go back to work. I’m trying to work until I am 62 to file for social security because I hear disability for Lupus is hard to get. So I am struggling. So if there are any other suggestions please let me know.. Thanks 🙏🏾

Great video! It can be so hard!

So sad to hear so many of us are suffering. Long story short I have ME/CFS and Fibromyalgia plus lupus like symptoms. I left my full time banking career and over the years kept trying to work ft pt wfh you name it I tried it. I have recently decided that I have to make it work on my own. So I started a small hair care line. It’s been really hard but I know working on building a business is better than working on someone else’s timetable. I can recommend pt wfh positions but they pay poverty wages 😂

Loved this video! Very informative. .. I will definitely check the info out. 💘

I worked full time for 2.5 years, having lots of sick days. My body simply wouldn't keep up, although it's an office job. I couldn't do anything at all, just work and rest at home. At 25 this is not great especially when you live with your fiance and a dogy. I now work 4 days a week, it's better. I get a day to just rest to continue with the week. However, i get all sorts of infections, thanks to my treatment. Almost every month, either uti's or colds flus. You name it, i had it. Unfortunately I can't do much to prevent that. Hopefully in the future I could just work from home, that way all those unpleasant symptoms wouldn't be that bothersome.

I am working fulltime but I am in pain everyday. I would rather work just like 25 to 30 hours/week but I simply cannt afford it. I do not get any social benefits. I only get some tax benefits. I am 60% disabled. (I live in Germany).

I was a CNA and in school for my RN degree while working as a housekeeper at a local hotel and for a short time I was managing a home for handicapped adults. Then I got sick and couldn’t do it anymore. I didn’t get enough work credits for social security disability and my husband makes too much for me to get supplemental social security. I can barely get out of my bed some days so what I was working towards is done now. I came to terms with it years ago though.

You seem to have the same life as me except got diagnosed early thankfully and have family and friends, maybe being 38 the diagnosis wasn't around when I went in with all clear autoimmune disease symptoms at 15 in 1999-2010 begging for help...always the same, dismissed and depression, while I'm going blind, headaches, itching, rashes, inflamation, crying, no clue what triggers are but allergic to everything, and I've been deteriorating and it's fallen off a cliff lately and I'm scared. Buried in medical debt and alone, on SSDI now as only was able to work 11 years before having to "retire"...which is embarrassing going from 50,000 a year in 20s to 15,000 in 30s and still less then 20,000 and Medicare is 😞 awful.. I can't do this much longer.

I work full time for the government as a scientist. I'm on fmla and I work less than 40 hours with it but make less. I can't leave my job because I'm paying for short term and long term disability along with having great health insurance.

@shandaa2007

5 жыл бұрын

Crystal Moonshine I’m a Federal Government Employee working under Reasonable Accommodations (Desk job)

Lupus makes it very difficult to work at all, this disease is gets you each and every way one day your good another day your bad. When I was 47 and was told I had lupus I said ok I can handle this I don’t have no symptoms within 6 months I started feeling pains in my joints but I can handle it. A year later I started having trouble walking because my joints were hurting so much, fatigue was bad. Today 4/2019 I’m not doing very well I barely get out of the house because of the sun is too strong and it gives me a rash on my face, chest then I get chest pain, and shortness of breath. I’m a prisoner in my own home this is the life of having lupus, I’ve been dealing with extreme fatigue have you ever had this if yes what did you do for it? Thank you for listening.

@arch.hatoon9035

5 жыл бұрын

Sherry Mercado hey there I got the same kind of symptoms a year ago my life wasn’t so happy only because I was too focused on what’s going on with my body and how helpless I was, something to help you is to distract yourself from that it could be hard but it will help you feel better I promise. During that time of my life o couldn’t walk or go to university i study architecture it’s never easy but I worked through it and during my worst days I would stay at home and learn a new language since it’s effortless and it’s distracting. All the love and support 💕👋🏻

@jaymitaylor9937

9 ай бұрын

I feel like your explaining my life right now , no matter what I do I just feel tired 24/7 and so much swelling in the joints and pain I’m currently trying to find answers from doctors but they are giving me the run around literally . I feel so stuck at this stage of my life at first I had such a positive attitude about it and I felt that I could Handel it but it just gets worse by the day and The sun is my worst enemy as well I develop a rash and swelling not to mention the spot where the doctor decided it would be a great idea to preform a biopsy in my face ! Right on my cheek 😩I could go on and on but letting all of this out feels so good especially knowing that there are others going through these challenges as well sending prayers to you ❤

My doctor me to look into disability SS. When I turned 30. I filled out the forms, saw there doc. They send you forms with the same questions on them so I ran a copy.. Their decision came in the mail, it was not only a yes but a lump sum of back pay. I don’t know how anyone could live on it. Surely ask questions. I was a RN Trauma Nurse, maybe I could have gone back to school and gotten a MS in CRNA it would have been easier. Bad night tonight.

I´m working a full time job, but as it is family business when I feel sick I can take a day off, wich is great, I would really like to work in something related to my degree and also something that gives me more money because its lupus and you really need it, but I´m really scared to try it because I know it is going to be har.

Hi, I was working as a CNA (certified nursing assistant) full time but it was very hard for me to be on my feet all day long ( I worked day shift) I was in so much pain, fatigue stress I just couldn't do it I had to quit but thank God my husband is supporting me a lot. I applied for disability still waiting for a response

Lupus patient too✋✋ nd I was diagnosed on 2017 ... Nd due to lupus my lungs are filled with water which is getting worse in breathing difficult nd and my kidney is affected which m taking mmf 500mg 😢😢😰😰 I feel so exhausted evrytime

I'm 18 and I just applied in a full time job for the summer vacation but it gives medical insurance, plus I'm planning to shift on part time after first 3 months

I just found out and I feel that I cannot work at all. I’m wondering if I’ll ever be able too. I’m having trouble applying for disabity because I am bringing me cuz I can’t eork

I working as a home health aide prior to getting my first flair up. I ended up being let go and not working an entire year because I was too weak. In 2015 I became a medical scribe full time I was exhausted and my hands hurt from being on a computer all day but I did it. I recently left that job and now work full in the IT Department at a local hospital. I work 7:30-3:30 and I sit all day but it’s still hard. My body aches and my eyes strain from the computer plus getting ready for work I want easy. My job could be done remotely however I feel ashamed asking even though I have only been there for a month. I believe I would be more focused on my work if I didn’t have to stress about wake up and getting ready. Anyone ever worried about what someone would say?

Does Prednisone or Hydroxychloroquine make a big difference, I'm afraid to try again with the doctors but I've never had those and it's that or living in a tent and finding safe pain medication somehow to even make it anymore, and I don't drink or anything, but I can't suffer like this...hospitals here In ohio are so bad and people are even worse. Anyone I ever helped when I was younger disappeared and family is non existent. When you said work in the dark I cried because I always thought I was a freak due to my eyes being so hurt and developing actual now nearly blind in the dark or light but black lines and dots "vitreous" floaters from access protein hardening in my eyes, and I can't go in brightness at all. Since I was 15 this started and everyone thought I was lazy and just weird for wanting to stay indoors and always being tired and sick...like I was faking. I know for a fact if any of the health people who judged me wrongly had to live with this they wouldn't last a month, I know it. I wish there was a community of people who understood I could move around and help one another. I would live in a tent at this point, I'm such a great person and can't live my life here in awful Ohio and spend all my small SSDI income on rent and food and that's it. I can't afford medical care, and what I have gotten has ruined my credit as they didn't treat me with kindness or listen to me... It's not ok.. And people donate so much money to people go fund me for silly reasons like for material things, and I would never make one or ask as I'd be too ashamed, but I see it and think, what about those sick and alone, how many others are like me with noone and nothing? Money is paper and humans don't care... I would give all I had to help those in need as life's short and trivial. I hate suffering and seeing others suffer, gosh I want to leave and find somewhere to go. People are not nice and the world is just luck of the draw either you meet good humans or not...be It the right doctors who care or don't, friends who don't take and just love you for you and don't judge and help one another and so on. I couldn't have had a worse luck of the draw. I'm tired of crying and hurting

Since 2018 the social security administration has recognized Lupus as a chronic disease that is disabling enough to qualify for social security disability benefits.

Check Dr Joel Wallach all the solutions are there. This is a blessing from Heaven.

I live in Germany and I really don't understand why so many Americans don't want to accept Health Insurance/Obamacare? :/

@nk2682

3 ай бұрын

Speaking for myself the ACA is only helpful if your state expanded Medicaid. My state did not. So I don’t make enough to qualify for tax credits to get help with the ACA’s monthly premiums. So a lot of people are just left out in the cold with out health insurance 😢