I'm curious...and if you don't want to answer, that is ok too. I just wanted to get a general idea here how many are on SSI (and if RA is your only diagnosis). Or....do you work full-time? part-time? what type of job? Do you have difficulty working? Or....are you retired? Or....do you work taking care of your home, family or children? Do you mind adding your age? I know I'm rather inquisitive (ok, call me nosy if you want). I am trying to re-wrap my head around RA and how it affects us and our lives. Thanks, JuliahI just turned 40 years old and work part-time as a mental health therapist. I recently opened up my own nonprofit children's counseling agency and wish-granting foundation. I know I couldn't handle working full-time, nor do I have a desire to. I work between 0 - 20 hours per week, depending on how I'm feeling.
Yes, I am on SSI.
Yes, RA is my only diagnosis.
I want to work, but have not been able to work since I was 19.
I am a homemaker have been since I was 19, and I might add not a very good one. It is hard to keep a house clean, dish kept up, keeping kids alive (which I spend most of my time doing), having dinner made, and the laundry kept up.
I am 28 (ok will be in a week).
Joonie, I can relate about the housekeeping. I do enough to get by, but I agree, it is hard to do it all, so I usually don't :)
I work full time and am hoping to for a very long time. It was not until I found this community that I knew people actually had to go on SSI. I hope I never get that bad!Juliah I got SSDI. Can't imagine working. Amazes me those on here that work while flaring. Chin up Juliah. I know you are having a hard time with RA but your positive attitude and faith will get you through it. You have always been an inspirationHope you can work for as long as you wish too I work full time as a middle school science teacher. It does get very hard.
I feel like I have been fighting a uphill battle since diagnosed as a
teenager. I have RA and Sjorgen's. College was hard-I use to keep a tally
of how many times I skipped each class so as not to violate the
attendance policy! I am lucky in the fact that I teach older kids...they can
pass out papers and get things for me if I need them. If I taught
elementary school it would be alot worse.
Like I said before, it is hard, but I am still very happy. I love my job. I
love my students. I love my sticky fingered little boy. I am also blessed
in that I have a very close group of friends. If I find myself feeling down I
just need to call one of them and they will have me laughing till I cry. I
know one day I will probably need SSI. Statistics show that an individual's
quality of life declines within 10yrs of being diagnosed. Well, I am 31
now and I still am independent. Now, I was also blessed to be treated
very aggressively from the beginning. MTX from day one. I was my dr.
first patient on Enbrel..and so on. Plus, each person's RA is different. I
totally understand that for some people SSI is a reality much sooner. I
guess what I am trying to say is that I take no credit for still holding a
job-I have just been lucky. BUT--More and more of us are getting the
aggressive treatment as doctors realize the different it can make.
My advice is to get as educated as possible about RA and find a dr. who
will work with you. It may not be the first RD you have. Having a good
relationship with your RD will allow you to ask questions and to not feel
uncomfortable disagreeing with them.
Becky
Hello all,
Dx'd 1 year ago. I am 46 years old. I work full time as a college instructor. I always teach a huge overload and summers. This is a step down energy wise for me since I use to work at the director level in a hospital. I also go to school part time for an additional degree. Starting next fall I will teach a regular load only and just take one class. I still have a 15 year old (out of six, thank God they are are in college or working now) at home. Oh yeah and I design and teach jewelry making class.
I am cutting back because I am EXHAUSTED, my house is a mess, I can't stand to shop or cook anymore and my butt is normally glued to my recliner. I always had HUGE amounts of energy. Raise 6 kids, work full time, be a girl scout leader, cook huge meals and entertain, do every craft in the world. I never thought I would be happy to see my youngest get her driving permit, but I was ecstatic. I am too tired to even drive.
Luckily, I don't need to work. But I love my job. I can teach some classes distance from a computer. But I still have classes on campus, meetings to attend, committee to be on. I don't know if it is worth it to exhaust myself with my job and then have nothing left for my family. And this is on a ton of meds, including adderal to keep me awake.
My only reason for not rushing into giving work a try again is...
The fear I will not last long at the job. I mean when you overexert yourself you lower your immune system even lower and you are more susceptible to getting infections and getting sick. I had been dealing with chronic bladder infections for about 6 months and was off Humira 4 times and each time it took a little longer for the Humira to kick back in. The last time it took me over a month to get back to where I felt like Humira was actually doing like it had been.
I know no place that I would go to work at would let me be out for a month or more because of being off Humira and not being able to do the job they hired me for, would keep me on... I would more than likely be fired. I have hopes and dreams of going back to work, but I know in my heart I will not be able to.
After I get my referral to another RD, hoping in July I will get that referral, that I will be put on meds that will better help me and actually have an RD that will take my complains and address them and make them better. Then JUST MAYBE, I will be well enough physically, and not just think I can do it, to go back to work and actually be able to work for as long as I can.
I am 32 and was diagnosed with RA 17 years ago. It used to be much worse back in college when I was only on MTX and Motrin but my quality of life did a 180 when I had a hip replacement and I went on Remicade 7 years ago.
I work full time in property management. I've looked into SSDI though I am not yet at a point where I need it. I am married (no kids) and lead a fairly active life. My husband and I travel when we can. I also exercise at least a few times a week. I have noticed a HUGE difference between the times when I exercise regularly, and times when I do not. I'm hoping that I am still many, many, years away from SSDI.
Good luck to everyone
i am on a dissability pension . have been since 2002 when an asthma attack killed me and changed my life forever.I worked for almost 6 years with RA. I was treated aggressively from the beginning but nothing has stopped it's onslaught. However, I have multiple autoimmune diseases and have now progressed to the stage where other body systems besides my joints are being severely affected. I meet with my new Rheumy this week and I am praying that he will offer some kind of new treatment plan for me. All my other doctors are waiting for his response. I feel like I have been holding my breath forever waiting for him. But I've heard that he is an excellent doctor.I retired two years ago but have since gone back to teaching full time. I found that even though at times it is can be difficult to work, I find it even more difficult to stay home. I love to work and enjoy teaching.
Methotrexate had made it possible to go back as it has improved my RA so much.
I am 49.
I'm 56, been retired for 3 years and have had RA since 1983. It's so nice to be able to rest when I need it. I exercise with a friend 3x week. On my good days, when my hands don't ache, I like to crochet afghans and do some photography
I am 43 and on disability benefits(uk) .I am a qualified dental nurse and special needs teaching assistant. I worked as a dental nurse for years and went into special needs when I had my children as working in schools gave me the same hours and holidays as my kids and i enjoyed the work. I have also worked in a funeral home as an arranger.I gave up work as I was missing too many days from illness and I had a major flare which left me almost bedridden for a year.I miss working especially as my 2 eldest children are both working now and my youngest is 13 so the dependency on me isnt as great.
I have RA, OA and IBS. The fatigue is constant and I know I wouldnt be any good to an employer anymore.
I was diagnosed about a year ago. Before my diagnosis I worked part time as a paralegal. I continue my part time work as a paralegal.
When I initially developed symptoms I was having a very difficult time working. When I look back I don't know how I did it. I have been doing quite well since starting MTX. I am so grateful.
I do feel I am not as good at my job as I once was. My mind has more difficulty focusing making it difficult to get as organized as I would like.
I also have osteoarthritis in both big toes but that is the extent of other illnesses.
I am 40 and have been a homemaker for the past 14 years since my daughter was born.I am 36 and working full-time. I am married, with no kids, and fortunately my husband does most of the housework, shopping, and cooking.
I do have trouble working, not only from the RA (which is not yet under control), but also fibro and DDD. I am trying to hang in there as long as I can...because I like working, because we need the money (I make more than my husband), because we need the good health insurance, etc. But I know there will likely come a day when I will have to consider SSDI.
Like Patti, I do not feel that I am as good on the job as I once was. Luckily, I used to be pretty damn good, so now I've only fallen down to "average" most of the time.
I have the same trouble with that stuff you do at home, what was that called, oh yeah, housework. Hubby does most of it but I just can't keep it tidy. I should get someone in once a week just to keep on top of the mess and give my hubby a break. Cooking is something I hate the thought of giving up, its one of the few things I do around the house. My kids are 21 and 23 so they help out and aren't too much physical work.
I hope when the time comes I can start by scaling down work and not have to quit cold turkey. There is no Disability here as long as hubby has a job so not being able to work would hurt financially. I think it would hurt more as far as sanity goes, I find it stimulating to get out of the house and HAVE to do something.
I am 50.
I stopped working in 2001.
I have been Dx'd with RA/PA/OA/FMS.
I am awaiting a decision from the Judge for SSDI. I filed in Oct 05.
Right now, I work 40 hours at a small optometry office. It is very difficult and I wish I didn't have to work but for financial reasons, I do. My job is low key and I am not very busy, if it were a "real" job there is no way I could do it. I am looking into disability but we would probably lose the house. I am 36, almost 37, was officially dx 2.5 hours ago but was sick about 6 months before that.
I work full time and then some. lol
I'm a secretary/office manager and I've been very fortuante to be able to continue working as well as I have. I've had RA for over 13 years now and still manage very well all things considered. There are plenty of weeks when I come home from work and that's all I can do. Nothing more. THEN there are plenty of weeks where I can still manage my housework and much loved yard work as well. Some times are better than other's but over all my job is not very physical. I'm fortunate as well to have a husband that doesn't consider the housework "Woman's work" it's "our work" and he's more than happy to pick up any slack when nessesary.
Over the years I have had to quit side jobs I liked doing for extra money because they were just too physical. I could work a hard weekend and then have a horrible time managing my fulltime job on top of that. I had to stop that; but still manage the office stuff very well. I feel for anyone that has to be on their feet running around all day lifting and moving things. That I wouldn't be able to manage.
I'm 60 diagnosed 3 yrs ago with RA but also have OA, Sjogrens, Fibromyalgia, and skin cancer. I've been dealing with the OA since my 30's and the fibro since my 40's. Up until this year I worked full time as a special ed teacher and author/illustrator. This year I was on a reduced workload program where I only taught 2-3 days per week. It saved my life. I hope to continue with the reduced work load for another 2 1/2 years so that I can keep my excellent teacher's health benefits. They pay for the enbrel and other meds I need for the RA.
I have a special exercise program worked out for me by a PT. If I do the exercises, some of which are in warm water,regularly, I can keep moving. If I stop, I become extremely stiff . I am lucky that my job allows me to move around a lot and there are no stairs. Right now I am doing better. There was a time when I considered disability, but my doctor urged me to keep working and I'm glad I did. I've been able to get off the MTX and am now reducing my prednisone. The name of this disease is one day at a time. Keep moving, do as much as you can, keep working on enjoyable projects even if it's 10 minutes at a time. Rest when you need to, but not for too long.Listen to your doctor. I was treated very aggressively from the start and it's made a difference.
Great thread idea.I'm still working full-time as a Surgical Pre-Admitting RN, but for the past 6 months I've been calling myself off on slow days (usually once or twice a week) because it's just getting to be to much working 5 days a week...my entire weekend is spent in bed recuperating.
For years I worked in PACU, but since 2004 (after several foot surgeries and ankle fusions) I have not been able to stand and be up on my feet all day. The job I'm presently doing is mainly desk work with minimal standing and walking and I'm much better off in this position. But like I said, 5 days a week is just getting to be too much (I also have really bad knees and need bilat. knee replacements) so I'm looking at cutting back to maybe 2-3 days a week permanently. My Rheumatologist and Orthopedic Surgeon have both talked to me about applying for SSI, but I'm just not ready to give up yet.
Gale...age 53
I am 42, never married no kids and have been out from my job (Financial Services Sales which involves extensive weekly overnight travel) on short term disability since March 15 this year with "official" DX of RA following shortly thereafter.
At this point, with no improvement yet from any meds, I am approved to be out for yet another month. Have no idea what is going to happen next....
I know my company's short term disability plan does provide for a total of 26 (which it looks like I will be using up at this rate) weeks at 60% of my base pay (and ZERO commission which was by far the better part of my income throughout my career). Financially I am becoming quite strapped with just this reduction in income. Argh...
I get "well enough" each evening usually for a few hoursto be able to handle basic self care functions and very short driving trips (store for example)... So unless I have a miraculous response to the biologic I will be starting on in the next few weeks, I cannot picture how I will get back to my work....And if I think about it too much I start having terrible anxiety attacks.......
Regards,
Melly
Melly, so sorry to hear that. How scary. I was talking to my sister (who like you has never been married, no kids, good job) who is your age. She was asking some questions about debt and such. She hasn't been worried about how to pay the mortgage or bills. She only carries a small debt amount anyway.I am54 and a stay at home mommy to a 5 year old and a 20 month old.
I am on SSDI, which I recieved in 2003 due to severe cardiomyopathy. I was so sick they were talking about a transplant. At that time my RA was only in my thumbs..
When I stopped working I was a full time substitute teacher. Over the years I have been a sub, an Independent Living instructor for teens in foster care, a newspaper reporter, and a waitress.
I take care of the kids and keep up pretty well with the housework, using the flylady program, so I dont fall behind.
Hi, I'm a retired architectural secretary. I've had RA for about 15 years. I am an artist, homemaker, I play golf and tennis and walk the beach every day. My RA started in my feet, with serious swelling and pain, i had been taking 4 mgs of mtx a week. Then I had a heart operation, the RA went through the roof. I'm slowly getting my life back with the following medications. I cna't imagine typing, working, doing everything I used to do with this RA raging!! I fortunately have medicare and Blue Cross. Humana for some meds. LyndaI am almost 39 (less than a month lol) and a stay at home mom with 1 teen and 1 pre-teen. Our pre teen has JRA. I was a paramedic for many years and then had to quit due to my knee. I worked in hospitals after that.
My family is very supportive and understanding. I am pretty lucky with that.
I will be 41 in Sept. I was dx in Sept 05 at 39. I used to have my own cleaning business. 9 houses I cleaned, I worked on Thurs. as church secretary, and also a independent designer for Home & Garden, was cub master and girl scout leader for 9 years, and taught Sunday school. My ra started in my hands and feet. I tried to get disability but did have enough earned credits. The only job I have now is church sec mainly because the Pastor is so good and understanding. Many times I have called in. She is been just great. My husband makes around ,000 a year but we pay over 0.00 A MONTH for insurance, and copays for meds total at 0.00. Mortgage, utilities, two kids 14 going in high school and our 19 year old daughter is in local community college. She is paying her own way and works part time. We been having a hell of a time making ends meet. I am looking for to the day that this humira kicks in or some other med so I can go back to work. I have a wonderful supporting family. Some days I am able to do more housework than other days. Everyone pitches in. I used to do many hobbies one of which is painting. Pastor and I started a full room mural of Noah's ark a few years ago and I hope I can start painting again someday and finish it.This IS a very interesting thread...so thanks for starting it, JuliaRA!
Maryblooms, Thank YOU for your kind thoughts and sharing about your sister. Like her, I really don't have much debt either thankfully. And I AM lucky in that I do have the support of my family and some friends. My mom and sister are close by, and after the initial "getting it" so to speak, they have really been great at being there for me - not so much emotionally (but we have never really been that way anyway) but very much so in all practical ways which has been super helpful. I don't think I am at the full blown anxiety attack level yet (it's just been starting) as I really do still believe that I am going to end up getting back functional again in the long run... It is when I let myself doubt that thought that the anxiety sneaks up on me...
Regards,
Melly
Hope things are getting better for you Melly.I am 46 yrs. old and was diagnosed at 26. When I was dx'd I was changing the big truck tires for a living and for the most part, I thought that was the reason for my pain because of course, arthritis never strikes anyone that is 26 yrs. old.
By the time I was 31, I was pretty much bedridden and getting SSDI was pretty much a "slam dunk." After getting my disability, I had joint replacement surgeries that would become lifesavers. At this point in my life, I was depending on my elderly mother for almost everything and life was not worth living anymore.
After recovering from 4 joint replacements, I went back to work in security and actually made a decent career out of that. Anyway, it was something I could do.
In 2005, I decided to pursue the SSDI once again, and once again, it was pretty easy to get. Not having insurance with my job, I had been concerned for a couple of yrs. about the condition of my neck and spinal cord. Certainly the docs were concerned.
Well, now after recovering from cervical fusion and a knee revision and possibly a hip revision, I plan on getting off of disability once again and going back to work and going to school to find something that will pay a little more money than being stressed out in the security field wondering whether or not my people are going to come to work.
I love to work and hate being dependent on others but I came to the realization a long time ago that sometimes it's necessary. My dear and understanding wife has pretty much done everything around the house along with taking care of me without a complaint for the last 6 mos. I am so fortunate to have such a loving and caring family.
maryblooms--I've found out in the last 6 mos. of cervical collars, leg casts and braces and learning how to walk again that most people are so very considerate. I've found that taking help from a stranger is not a sin and sometimes makes them feel good about themselves also.
i am 46 yrs old and got RA for my 30th birthday present. I have two daughters that are grown an moved out. Just me an hubby hanging out.I work full time at a small hospital in housekeeping. Very physical and demanding at times.I was laid off in december from the linen rm.(also physical) and housekeeping had the only opening.Sometimes i come home and i am so tired i dont think i can do it anymore but then i get up the next day and go to work. Im afraid if i dont i will give up.I will fight this to the bitter end.IF there comes a day when my body says no more or i run out of options i guess i will go for ssi.THe doc that told me i had RA said i would be in a wheelchair in ten yrs. I just thank my lucky stars im not. just an add to last post, I carry the health ins. because hubby is a farmer.I have to work to afford the meds.