I was re-reading some old posts and saw someone had mentioned massage therapist as a possible job for a person with low/no vision. If anyone else has any other good suggestions maybe this would be a good place to start a list?
I'm still employed full time at my usual job, but it makes me feel a little more in control to consider all options and to at least have the beginnings of a plan for the worst option.
I think I wrote that post many many moons ago. Hey, I'm with you on feeling a little more in control and with a job and some time...who could lose. At worst, you would gain a new hobby or side career. I knew a man years ago over on Hilton Head Island who was blind and he made....hammocks, believe it or not. The Pawley's Island kind that are hand made and a mite pricey! Then and now! You know, in days of old, the old men with bad health and poor eye sight were the fishing net repairers. It's a "feel for it" kinda thing. I still think massage therepist is the best. Acupuncturist also. They make the type of salary that's nothing to sneeze at. You can only work so long each day before wearing out but hey... few of us make $100.00 an hour ANYWAY! It goes without saying that anyone can garden...grow food or flowers. I won't say you could make a living but depending on where you live...maybe. At least enough to supplement what YOU need or a local store selling a few bouquets of flowers. You could become a dog sitter if you live in the country with a fence or in town take good house trained pets in your apartment. All they need is someplace to be and food which you can do easily. All of us women can do this as they say...with our eyes closed....a laundress. Ironing and washing...at $2.00 an item...man please! At 5 minutes per item, (Pants/Shirt) thats 12 items an hour for $24.00 an hour for 8 hours a day = $192.00 a day or $960.00 a week! That's untaxed cash..ola, my friend! For that...I could say, "Im a Laundress!" Ha....Im sitting here thinking to myself now, "What am I sitting HERE for...I SHOULD be a Laundress!" An acquaintence of mine worked for a hotel chain doing laundry and got $2.00 per sheet washed and folded and $1.00 per towel. It WAS hot and her arms and body were very tired each day moving at a pace to make a living to support her family of 5, but there were 6 other women waiting in the wings for her job and she was in GREAT shape. It goes without saying that without a degree where they pay you to think and do nothing else...what a low vision person can do will not be considered a Fortune 500 career. But it is self satisfying work and better than nothing which would really be bad sitting around with nothing to do. The pay supplementing disability pay is nice also. You know if you knew someone willing to work with you, really insignifigant jobs could be part time and rewarding...a pizza maker, a sub sandwich maker. Anything where theres a routine and supplies are set in the same place and you do the same thing over and over again. I dunno....it would be interesting to see what everyone could come up with. When I put that out long ago, no one seemed interested enough to even comment. I knew I couldn't be the ONLY one thinking along that line.
You've got some great ideas. Love the pet sitter one! I never would have thought of that. My job now involves lots of driving, giving presentations and computer work, none of which I'll be able to do if my vision worsens so I'm trying to plan ahead. Thanks for helping me realize there are options out there if we can be creative and open to seeing them.
Hi, ,Sue. I don't know what your work is exactly, but I also do "computer work." Would it be possible for you to do presentations via the web, using something like Live Meeting, Instant Meeting, etc.? Then you would not have to travel to your presentation sites--and save a little $ on travel expenses, too. (At my compnay, we use these programs all the time both for internal and customer presentations.). Also, there are many adjustments you can make to your computer to increase usability and many "accessibility" software programs out there (I use ZoomText Magnifier) that help.
This is my experience with finding work and keeping it after vision loss; hopefully it will ease your mind at little.
The bottom line is most of us can keep working with the right tools, a little help, being flexible and open minded because rarely is their only one way to accomplish a task! Some jobs, cabbie, truck driver, bus driver, bench jeweler, welder are what they are, and reality is what it is. But maybe your sight will stay good, but reality is most get night blindness or severe glare issues even if they retain good vision.
So learn your options. Big businesses are better then small, when you have a disability. Most disability laws and protections exclude small businesses with less then 100 employees, like FMLA, and requiring a business to accommodate reasonable needs like bigger monitor, low vision keyboard or task lighting for your desk. FMLA coverage is available after 1 year’s employment and 1250 hours worked, so even part-time workers are covered. Briefly it protects your job so you can take days off for appointments or treatment, leave work early because the drugs make you tired, even when you run out of vacation time. Some states even provide more coverage for disabled workers. Businesses receive tax brakes for hiring or retaining disabled workers. Help them earn it! Learn what’s out there with protection from the federal and state!
Here’s my story work wise. BCR was diagnosed in 2002. I was a bench jeweler and designer in NYC for 28 years. As I developed vision issues I simply hired staff to do the parts of detail work I could no longer do. This worked well until 01/05. I suffered 2 major permanent vision losses in 1 week. First a major bleed destroyed 2/3 of one eyes vision all the center sight, and I went colorblind in a matter of days. I had to sell my business in mid 2005 as reality was my unique skills were my business.
For a year I was stuck in all that I had lost. I started working full time as a jeweler at 17, it was gone at 45. I felt I had no marketable skills, and was just a burden to husband.
One day I snapped out of it. I bought a large screen for my home computer. I took every computer course at the community college. I brought my folding OTT light to class. At the end of my 1st class the instructor asked me to stay, he asked about my sight. Then he asked me to wait for a minute while he made a phone call. He came back with a name and phone # for me to call the next day.
Greg had lost and damaged sight from a car accident 25 years ago. He lectures at management/human resources seminars for big businesses about dealing with disabled employees and adaptive technology. He asked if I would meet with him and allow him to do an assessment of my skill potential. I jumped at it. One by one he added adaptive technology and retested me. All the items are relatively cheap. A low vision keyboard, hand and stand magnifiers with the right power and type of lighting, glare screens for CRT monitors and so on. He showed me how to screw with all the computer settings, and more importantly for adjust font sizes and setting that changes almost all text on the web to a type I really found to be the best for me to see. That by using Internet Explorer to access the net I could enlarge every single page. The last thing he did was give me a list of great places for me to work in our area.
A few months later I was employed at a major hospital in a clerical position, where I worked on the computer all day. From day one they have been outstanding with my needs, big screen, low vision keyboard, task lighting, Dr’s appointments, everything. My second year there, I needed more light then task lighting could provide. My work involves the electrical shop. I went and asked the head electrician what he could do for me. That shop starts work at 5am, the next morning when I came to work my work area had lighting like a runway, they had changed all my ceiling fixtures.
Over the past few years my vision has gone up and down, and the job worked with me. For 5 months last year I had 20/400 vision. I had developed pneumonia on Zenapax and the infusions had to stop for a while. Immediately a massive uveitis flare set in. Steroid injections/drops were the only treatment options because of the pneumonia, followed by my existing baby cataract going into overdrive and aging years in a week in my seeing eye. That Friday I told my boss that I had to stop working until my Uveitis flare was over and cataract surgery could happen. Best case was 4 weeks before surgery would happen then at least 2 weeks after surgery. He asked me if I had enough sight to come to work and move around safely, forget about the work part, and I did. The day before he learned that our upfront person was having unplanned open heart surgery and would be out for 8 weeks. He would be overjoyed if all I could do was handle the phones and assist the temp for my job instead. It all worked out beautifully. The week the other person came back I had surgery, and my temp was very comfortable in my job and stayed until I was back full-time.
I know my experience is not unique. For every job that might screw you there are tons that will work with you. The things out in the market that improve our ability to work are many. But you have to go and look for them. With a Dr’s note stating a vision impairment, call you local Vocational Rehab office about low vision training. Cost ranges from free to a sliding scale by income. It’s in your states interest to keep you working and paying taxes.
Google to see if there is a Lighthouse for the Blind near you, call the Lions Club they are HUGE in vision rehab and helping the low income with eye treatment. Google low vision showroom and where you live, look for a low vision optometrist in your area (see links below).For task lighting I love OTT lighting, there are so many styles, find a lighting showroom near you and experience them, then get the best price on the web. Replacement bulbs are easily available. There are tons of small adaptive things you can buy and do at home and work to improve your life.
But you have to be proactive. Learn what you can do to be a better employee and your vision not be an issue. Work arounds are everywhere, is my experience. Look around at work at the other jobs and what they entail. You might find one that will be better suited to your vision if it changes, and in my case pays better. This was the smartest thing I ever did. The job I have now pays good, is nice and challenging. More importantly my boss allows me to work my 40 hours any way I want. For me this means that I can use a vacation day for my appointments, or work 4 x 10 hour days, or work on the weekend, always my choice. I leave early or come in late if the weather sucks for driving, I went to him before I applied for the promotion, and I put my needs on the table. He told me the job was mine for the asking. That he would do whatever it takes to have me move into his dept, my work ethic and people skills far outweighed my limitations.
One of the best things you can do to keep working and enjoying life is have specific glasses for your regular tasks. I have distance, computer, sewing/craft and reading glasses. I set up my home and work computers so the keyboard and monitor are the same distance as they are at work. Small things can bring major improvements. Getting the best task glasses is easy. If you do the task sitting bring the measurements from your eyes to the task as you’re doing it or as you used to do it before your sight change. The right script will bring a positive change; you might find that bifocals are needed to do it best, what ever it takes.
Here is assorted info I hope you find useful:
Types of low vision keyboards and overlays, my keyboard/keys are beige with bold black lettering. For me black sitting on a black tray was no good, but many people seem to like the black with white or yellow coloring. I can’t see yellow (I see a dull white instead) and I think that’s why that board is not right for me:
Rimless magnifier with LED light, I own 7 of these no joke. For at work, bedroom, kitchen, home computer, couch, and in my purses to go everywhere with me! Replacement button batteries are at Radio Shack or the net. The only real issue is the handle is dull gray so it can be hard to see when you put it down. Instant fix for this and other tools that blend into their environment on you. Hardware and auto parts shops sell all kinds of bright and/or fluorescent tapes in different sizes problem solved:
Vocation Rehab by state:
American Optometric Association – look for low vision specialists for your next eye exam
Telepresentations aren't really an option with my job as cold calling (just walking in without an appointment) to new offices all the time is a big part of what I do and of course, the driving it takes to get to each office. But it's a great suggestion that may be helpful to someone else on this site.
Thanks for sharing your story and all the great specifics. It's wonderful to hear of the accommodations your employer has made to keep you in your position and especially how you didn't give up! I really hope others will share their work stories also - the good and the bad - it's all good info, right?
Thank you, Brandy, for writing your story. I, too, would love to hear others' stories. I think a session llike this would be great at the BSCR coference: Patients sharing theier real-life experiences and helping each other.
My birdshot is back, and I'm filing FMLA today.
Its a great idea to remind folks that FMLA also covers chronic medical disorders for individuals who need to take time off for MD visits, etc.
I also suggest calling your company's EAP (Employee Assistance Program) I found ours to be a weath of information.
Great stories and suggestions!!! One I didn't think about but one of you did....telephone answering. Now THAT is a necessary job at most businesses! WOW, this is great...this really is opening some ideas. And as Brandy said...most any job can be adapted to some degree to allow some continuation HOPEFULLY! Hey Dagmar...sorry to hear your BSRC is making itself known. I'll keep you in my prayers!
Sorry to hear the news. How long were you in remission? What meds will you take now. When it comes back, is it worse? Harder to get rid of each time? Thanks for the help, you are a weatlth of imformation to all of us newcomers. Good Luck
I've been on Cellcept and Prednisone for almost 3 weeks now and haven't had any problems yet. Except for heat flashes. I have lots of energy, maybe too much. I hear people talk about how the cellcept wipes them out and wonder does this come with time on the med? Again thanks for the info.
About 5 years ago, my MD put me on a course of Pred. I didn't gain any weight, I felt great, I cleaned my whole house and then went up the street and cleaned my sister's.
In December, I was put back on the same course of Pred. and the effects were entirely the opposite: weight gain, fatigue, moody, foggy thinking, etc.
The good news is my vision has been clearing up.
Side effects, as many have written about here, are just so hard to predict.
I've never had any problems with CellCept.
Hi Ev, Hi Patty
Sorry to hear your news Patty.
I agree with Patty, side effects from cellcept - very few (in comparison to other drugs I have taken for birdshot.)
My current complaints - I am assuming from cellcept are:
horrid dry lifeless hair
loss of sense of smell
I only realised the last on the list recently, but have compared notes with Rea of BUS and she agrees with me. Has anyone else noticed this? Anyway I think you will agree that it is not much to write home about.
Best of luck everyone is different so there is not point in anticipating until it happens.
Yes to all...
I also get tremors or the shakes from higher doses of Cellcept
How long were you in remission?
Which time?! Originally had in 1991 as ideopathic uveitis, then came back in 1999. Steriods, cyclosporin, Cellcept individually, then cyclosporin/cellcept combo but in too low dose (9 years of experimentation). Finally found Dr. Ufret and he put me on the lowest level of the recommended combo and I went into remission until now. However, due to my divorce, I have been without meds for past 9 months, so no great surprise that I am out of remission.
When it comes back, is it worse?
Well... there is more destruction to the retina, so you lose something everything there is a severe flare. Not sure that I notice it tho, its like looking at a photo that is fading in the sunlight, when you see it every day, its not noticable.
Harder to get rid of each time?
Yes, in my experience, which may not be same as others. We all have different immune systems.
I've been on Cellcept and Prednisone for almost 3 weeks now and haven't had any problems yet. Except for heat flashes. I have lots of energy, maybe too much. I hear people talk about how the cellcept wipes them out and wonder does this come with time on the med?
For me, the first month or two is mostly annoyance with night sweats, hot flashes. Then one day you wake up and cannot drag yourself out of bed because you feel like you have been hit by a truck. I found taking vinpocetine, ashwaghanda helps.
I have a step in my garage I kept tripping over until one day I bought some bright duct tape and taped the entire length so I can see where the level change is.
I'm always surprised when I go into a public space (a museum most recently) and there's an enormous flight of steps that just seem to blend into one another - there's no visual delineation of the steps or contrast for people with low vision. Yes, the marble or granite is very beautiful but isn't there some easy way to make them safe for everyone? I like Dagmar's idea about the neon duct tape, but I don't think they'd go for that ;-) I found myself clutching the person I was with every time we went near those stairs. Maybe I should just use the elevator......
Hi Sue: Another career or volunteer choice to consider might be some type of counseling or coaching. Think about what your passion might be. I call it 'owning your live!'
After I was diagnosed with Birdshot I became a maniac when it came to researching nutritional and alternative therapies to reduce inflammation (which is an autoimmune response) inside my body. I started attending seminars and clinics to learn how to take better care of myself and , of course, the same principles apply to anyone else with whatever their particular health challenges are. I now do part time nutritional and wellness coaching in addition to my full time job in a financial institution.
I love helping people that are open to looking at nutritional and complementary care as part of the solution to their health challenges. Most of all I love helping people get great results!
And I know I can coach with my eyes closed!:-)
Have a fantastic week!
Dagmar: Thanks for providing such a valuable site for information and support! I am so sorry you are out of remission. Will you be weaned off of the prednisone over time or is that something you will have to stay on for an extended period of time. Prednisone makes me feel wired and agitated. My experience has been 10 day courses and that was bad enough. Plus it suppresses our already compromised immune systems! But all that being said, I know there is a place and time for it. I hope you will be able to get this flare into remission quickly.
Hi Shelley! I'm not taking any pred, there is no inflammation, just the beginnings of debris, so its just the cocktail of Cellcept and cyclosporin.
Also, not sure if I can take pred or not, since I was on it for 9 years straight, the result was adrenal insufficiency, it was all I could handle to get off. The adrenal glands are operating just barely within normal range. Dagmar
Hi Dagmar! Prednisone is scary with long term usage. I saw my retina doc today for a check up. Very slight debris in my right eye. I didn't go for a shot. He gave me samples of a new drug, Durezol, to try for a month. The last shot I had was very painful and then my inner eye pressure increased temporarily. It's always something!
Have a good day tomorrow!
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