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Hello,
I am looking for input from people with symptoms and limitations similar to mine about how they feel about work and/or disability. At this point I am not employed except to take care of a disabled family member as a care attendant for brief periods. I feel like I cannot imagine what productive work I could be trusted to do with my limitations, but at the same time I don’t think I could get SSDI especially at a young age.
Because of eye muscle weakness, I have to have large print, so basically most reading/writing is on the computer. I have a hard time looking at the computer screen—even with sunglasses, it makes my eyes hurt within a couple hours. Because my eyes are struggling to read, my brain is in a rush to get through it and I can’t be trusted to read the words correctly or take my time. It’s not just that I can’t see the words—my brain replaces them with something else. Like, I go to the store to get shampoo and conditioner and come home with two bottles of shampoo. I was sure the other bottle said “conditioner” at the store, but the letters are just too small.
So I can write, and check emails, but I can’t be relied upon to read accurately and I can’t look at a computer screen more than a couple hours a day. I also get fatigued, I feel this is from my eyes only, but it makes me unable to concentrate. Even going to the store can wipe me out. I can still move around, answer the phone, etc but my concentration is shot. I can drive but it tires my eyes out and makes them drier.
My SSA and SSB and even my RF are all repeatedly negative. My ANA is positive. The rheumatologist said it is unlikely I have Sjogren’s because people who have that don’t usually have eye pain as their major complaint, usually they have other problems too. I don’t. So without Sjogren’s I feel it would be near impossible to get SSDI for things like eye muscle weakness which is very common but not to the degree I have it, and dry eyes.
I might go to voc rehab but I was wondering if anyone is in a similar situation and what they think about career and/or the chances of getting SSDI. I listed my dx’s and treatments below so you can compare to yours. Thanks for any ideas/info. P.S. I was the opposite of this until the day of my surgery in 2011, I could work 80 hours a week and single parent and not lose my breath.
Dry eyes since 2008; Meibomian Gland Dysfunction, Blepharitis, ICL surgery 2011 and all these followed surgery immediately: pressure spike and vitreous detachment, early onset presbyopia at age 34 (risk factors: Anemia, Being female, Had intraocular eye surgery), binocular diplopia, Convergence and divergence insufficiency, Inability to concentrate on reading even with accommodations and drops and fatigued quickly by reading, Fatigue, getting worse, now if I exert myself for more than two hours I have to nap, Pain with dry eyes gradually starting post-surgery, or the itching, the burning, the feeling there’s something in my eye, or all of the above, waking at night to put drops in due to discomfort; Dry feeling in mouth occasionally, worse when eyes are very dry; Preservatives cause severe burning in eyes, only preservative free drops; Halitosis several years (very good dental health and dental hygiene); Iron deficiency anemia; Bruxism; Cold, with house thermostat set at 77, esp fingers, toes, nose, ears; photophobia (sunglasses inside, pain gets worse when driving)
Tried:
• Patanol
• Restasis since 2008, now 3x daily,
• diclofenac 0.1% drops, nonsteroidal anti-inflammatory drug
• doxycycline (caused dermatographia),
• steroid drop Alrex (can’t get preservative free),
• Tears Naturale drops every 20 minutes since July 2013 (~40 times a day),
• Genteal Severe Gel,
• omega-3,
• serum drops for two months,
• pilocarpine,
• IV iron,
• OTC dentist recommended “BreathRX”-brand spray and tongue scrapers daily
• Orthopedic nightguard
• Punctal plugs,
• warm compresses (only helps for a few seconds) and lid washes,
• Humidifier,
• goggles at night,
• prism glasses
• reading with OTC reading glasses at 2.75, in addition to large print or a magnifying glass
• sunglasses while watching tv or using computer
• I have seen 1 optometrist, 3 ophthalmologists, 1 orthoptist, and 1 rheumatologist. I have a referral to a neuro-ophthalmologist but they won’t see me unless I have more surgery or get referred by a surgeon for diagnostics.
I am looking for input from people with symptoms and limitations similar to mine about how they feel about work and/or disability. At this point I am not employed except to take care of a disabled family member as a care attendant for brief periods. I feel like I cannot imagine what productive work I could be trusted to do with my limitations, but at the same time I don’t think I could get SSDI especially at a young age.
Because of eye muscle weakness, I have to have large print, so basically most reading/writing is on the computer. I have a hard time looking at the computer screen—even with sunglasses, it makes my eyes hurt within a couple hours. Because my eyes are struggling to read, my brain is in a rush to get through it and I can’t be trusted to read the words correctly or take my time. It’s not just that I can’t see the words—my brain replaces them with something else. Like, I go to the store to get shampoo and conditioner and come home with two bottles of shampoo. I was sure the other bottle said “conditioner” at the store, but the letters are just too small.
So I can write, and check emails, but I can’t be relied upon to read accurately and I can’t look at a computer screen more than a couple hours a day. I also get fatigued, I feel this is from my eyes only, but it makes me unable to concentrate. Even going to the store can wipe me out. I can still move around, answer the phone, etc but my concentration is shot. I can drive but it tires my eyes out and makes them drier.
My SSA and SSB and even my RF are all repeatedly negative. My ANA is positive. The rheumatologist said it is unlikely I have Sjogren’s because people who have that don’t usually have eye pain as their major complaint, usually they have other problems too. I don’t. So without Sjogren’s I feel it would be near impossible to get SSDI for things like eye muscle weakness which is very common but not to the degree I have it, and dry eyes.
I might go to voc rehab but I was wondering if anyone is in a similar situation and what they think about career and/or the chances of getting SSDI. I listed my dx’s and treatments below so you can compare to yours. Thanks for any ideas/info. P.S. I was the opposite of this until the day of my surgery in 2011, I could work 80 hours a week and single parent and not lose my breath.
Dry eyes since 2008; Meibomian Gland Dysfunction, Blepharitis, ICL surgery 2011 and all these followed surgery immediately: pressure spike and vitreous detachment, early onset presbyopia at age 34 (risk factors: Anemia, Being female, Had intraocular eye surgery), binocular diplopia, Convergence and divergence insufficiency, Inability to concentrate on reading even with accommodations and drops and fatigued quickly by reading, Fatigue, getting worse, now if I exert myself for more than two hours I have to nap, Pain with dry eyes gradually starting post-surgery, or the itching, the burning, the feeling there’s something in my eye, or all of the above, waking at night to put drops in due to discomfort; Dry feeling in mouth occasionally, worse when eyes are very dry; Preservatives cause severe burning in eyes, only preservative free drops; Halitosis several years (very good dental health and dental hygiene); Iron deficiency anemia; Bruxism; Cold, with house thermostat set at 77, esp fingers, toes, nose, ears; photophobia (sunglasses inside, pain gets worse when driving)
Tried:
• Patanol
• Restasis since 2008, now 3x daily,
• diclofenac 0.1% drops, nonsteroidal anti-inflammatory drug
• doxycycline (caused dermatographia),
• steroid drop Alrex (can’t get preservative free),
• Tears Naturale drops every 20 minutes since July 2013 (~40 times a day),
• Genteal Severe Gel,
• omega-3,
• serum drops for two months,
• pilocarpine,
• IV iron,
• OTC dentist recommended “BreathRX”-brand spray and tongue scrapers daily
• Orthopedic nightguard
• Punctal plugs,
• warm compresses (only helps for a few seconds) and lid washes,
• Humidifier,
• goggles at night,
• prism glasses
• reading with OTC reading glasses at 2.75, in addition to large print or a magnifying glass
• sunglasses while watching tv or using computer
• I have seen 1 optometrist, 3 ophthalmologists, 1 orthoptist, and 1 rheumatologist. I have a referral to a neuro-ophthalmologist but they won’t see me unless I have more surgery or get referred by a surgeon for diagnostics.