Photophobia

Every morning when I don't want to get out of bed (I have 20 conditions), I have to tell myself over & over, how LUCKY I am to still be alive. #HEDS #addisons #fibromyalga #indwellingcatheter #LungDisease #boweldisease
#svt #thyroidfailure #anaemia #Photophobia #Cataracts #SjogrensSyndrome #BreastCancer #metabolicmyopathy #fibromyalga TMD/TMJ etc....

Update: A miracle has occurred sooner than expected! My new corrected tinted filter and filter cap for my glasses are in and am very grateful as insurance covered the cost. All I need to do now is get over this cold so I can pick them up! This is such a huge relief as I haven’t been able to go out in months without #Migraines , #Photophobia , eye pain, meaning I wasn’t really going out. And now I can be pain free very soon! Now I just need to advocate and figure out how to get the other custom pair that is for everything else that isn’t distance magnification or telescopic use covered!

This past month my #Photophobia has been horrendous. It’s been so bad that I can’t even go outside most days even if it is cloudy because it is too bright for my eyes to handle. This leads to #Migrane I’m already #LegallyBlind / #functionallyblind / #VisuallyImpaired so… now I have too keep my eyes completely shut which just makes things harder. Thankful for my #MobilityAids This has lead to a #Depression episode and of course my #Anxiety has been troubling a bit too. Mainly my #Trich has gotten out of hand because of the anxiety. But, good things are coming as I did have a tint evaluation for specialized glasses for the #Photophobia now we just play the waiting game and hope I can somehow obtain enough money for the second specialized pair that I can use for daily tasks once I find out the cost!

I don't know how to make life work living on disability--especially after I lose my mom's insurance. I looked at the figures for social security and I can only make $1260 gross income before losing my disability status, most of which would remove my SSI payment. I'm good at a lot of things, but haven't worked before, I wasn't able to finish more than a year of college, can't do demanding physical labor (no 40lbs for me), and can't be stuck all day in one position. I don't know if I'm looking for solutions, just looking for people and guidance on how to navigate trying to find work after being disabled. #Depression #Anxiety #Disability #EhlersDanlosSyndrome #Photophobia

I have to get glasses for the first time today. Doing last minute research because the severity of my poor vision changes

I came across this at the link included. There us also a kindle unlimited book (by I think the same author. If you have KU you can borrow it, if not it is 2.99
Ig coveres these issues in more depth

totaleyecare.com/ocular-complications-ehlers-danlos-syndrome

How do I know glasses will help / prescription will stay the same if blurriness levels change?

Common symptoms
Doctors and EDS patients must not assume that their symptoms are always due to their EDS and are therefore unactionable. For example, even among the EDS population, the number one cause of fluctuating vision is diabetes.

Blurred vision that comes and goes;
difficulty in accommodation
• Diplopia (double vision) out of one eye, or with both eyes open
• A change in depth perception, especially when looking to the side that may be intermittent
• “Photophobia” (light sensitivity) • Complete, or almost complete, loss of vision in one eye that lasts a few minutes; migraine auras, scintillating scotomas
• Visual “snow”
• Dry eyes
• Tunnel vision
•Floaters (EDS patients have more floaters than the general population)
• Flashes of light or a curtain over the vision •
*Vision that is not fully correctable with glasses or soft contact lenses. (Doctors should perform corneal topography on all patients with unexplained blurred vision.)
• Myopia (nearsightedness) that increases quickly •
• Deep eye pain that seems to have no ocular cause (it may be due to venous pressure on the branches of the trigeminal nerve -- the fifth cranial nerve in the cavernous sinus – and can thus exhibit intermittently).

Comorbidities

High Myopia
Nearsightedness
In Ehlers Danlos Syndrome, however, the corneas are often found to be fairly flat, meaning that the near-sightedness is due primarily to elongation of the eye.6
Keratoconus
Early symptoms of keratoconus include vision that just doesn’t seem as clear to the patient as it should be – even with use of new glasses or soft contact lenses. It is usually worse in one eye than the other.
Diagnosis of
Lens Subluxation
Angiod Streaks
Dry Eyes
Strabismus
Macular Degeneration
Posterior Staphyloma
Carotid-Cavernous Sinus Fistulas

Hi, I have Hypermobile Ehlers Danlos Syndrome and some of the health problems it has caused is photophobia, severe eye strain, and numerous hand problems and pain. I was unfortunately disabled before I could work, and in USA, that means I only can get Supplemental Security Income (SSI), instead of the Social Security Disability Income (SSDI).

SSI is a needs based program and only pays out the maximum of $736/month if you are homeless or paying an "equal share" of rent, otherwise the maximum you get is $514. I am getting $514 because I am at my mother's and even $736 is barely enough to rent a room where I am (Washington State).

SSDI requires work credits to get on (1 credit = $1,410 of net income and only 2 credits can be earned in a year) and I have found that I have to work at least five years before I qualify.

I have no idea how to do this with my vast collection of symptoms from my illnesses. Menial labor is out, due to joint problems and fatigue. Computer work is very difficult with my eye and hand problems. Because of the unpredictability of my illness, I would not be able to adhere to any kind of work schedule another person sets for me. The photophobia prevents me from working under fluorescent lighting. I then determined I would be limited to a multifaceted home business that would allow me to rotate activities to compensate for the limited time I am able to do anything before I am in too much pain.

Furthermore, my living situation is bad and my mother is a hoarder--i do not even have my own room and what space I have is pretty much full. I'm on housing lists, but the waits are years long, up to a decade. If I move to a place where you can live on $514 with a systems wide, incurable illness that many doctors do not understand, I will lose the network of doctors I have created over many years. Most places with that affordability also have a climate my body will fail in and do not have good healthcare. I am very stuck.

What do those of you with photophobia and/or EDS do for work?
#Photophobia #EhlersDanlosSyndrome