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Post Info TOPIC: Depressed, broke and hopelesss
Anonymous

Date: Wed Jun 5 6:46 PM, 2013
Depressed, broke and hopelesss
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Hello, Iím new here, and itís hard to say where to begin. Iím 45, and have had KC in my right eye since about 1998, and have never been able to get very good correction with a lens. Over the years I have tried about 12 lenses, from at least 4 fitters, and had at best a blurry 20/60, though doctors have said that itís not bad enough for a transplant. So I have felt stuck in the middle ground, where the best correction is still very wavy/irregular, and nothing seems to help. Itís also cost me a small fortune over time; the last time I tried to get a lens was 5 years ago, to pass the test so I could still drive to work.† So after getting turned down at the MVA, I went to Wilmer Eye Institute (John Hopkins), and had a lens fitter Ďfití me with a lens, and sign a note, and I got my license. But then I found out I had to pay for the lens upfront, and it was over $500. My insurance would reimburse me $200, but I have not had an extra $500 laying around for many years. So I never got the lens. Now, I have to get another license, or I will be unable to get to work, and Iím scared.

Iím also scared because I work at a state university as a library assistant, and for the past 5 years, each year, we have had to pay increases, but the amount they take out foe insurance and pension has gone up and up, so my net pay has gone down, while rent and everything else has gone up. I struggle to afford gas and groceries much of the time, even though I work full time. I try to find better work, but have had no luck.

I frequently get headaches, and feel tired, my eyes hurt, and I feel very hopeless and depressed, like I have nowhere to turn. I tried to see if Hopkins had some kind of way to help, but they say I Ďmake too muchí, †because my gross pay is $32,000, but I only net about $18,000/yr. So I donít know what to do. I have horrible credit, and no access to credit, and I have not found any resources to help. I called the national kerataconus foundation, and they didnít have much to say; they were going to e-mail some information on places that might help, but they never did, so I guess I will call them again, and hope.

Wearing a lens has always been very painful, and a real ordealÖI have never really been able to tolerate one for more than several weeks, they all have hurt so bad, from normal to soft-perms to this one called the Epicon, to scleral onesÖ

As I get older (I am 45) I feel more and more hopeless. My left eye is OK, but I think I need reading glasses. But itís not being able to seek carte that has me so sad. I feel like I have noplace to turn to. Often, because of this, and other issues, I donít feel very much hope in going on. Sometimes, I want to just end things, lay down on the high speed rail tracks, something,. I get tired of living. Iíve held on so far, but I feel so old and used up, and broke, never able to really relax, always worried about making rent, food, and things like that.

Iím not sure what to do. When I try and see what s out there, they say I make too much. But I have no assets, a junky old car, no house, no savings, no credit, and am losing the will to live, and the pain in trying to see and focus just makes this worse. I see a therapist but I donít know if it helps, or meds, evenÖbeyond a point, how do you solve the stress of not having enough money to really love, even though you work all the time? I hate the stress this brings, I now thereís others who have it worse, thanks for listening.



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Date: Wed Jun 5 11:52 PM, 2013
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Its a very tough situation your in and many must be in the same boat as you are. What ever you do, don't give up!...see if organizations like your local Lions Club could help you or national organizations such as http://www.lighthouse.org/

Do some research when you get the time and get the bull by the horns! - if there is will - there is a way!

Do let us know how you get on.

Show us that your made of steel ! your a KC Patient ! smile

Kelly



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Date: Fri Sep 5 7:47 AM, 2014
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You might try approaching this from a nutritional angle. Some have reported improvements in their keratoconus from eating a natural diet with plenty of
fresh foods. This doesn't have to be expensive. Simple foods like millet, listed as one of the world's healthiest foods, are some of the least expensive.
www.whfoods.com/genpage.php

Millet is high in magnesium, and people with KC are said to have an increased need for magnesium, which is also crucial for the nerves. Nutritional support, exercise,
and meditation or periods of introspection would help you get back on track physically and emotionally, opening the way for new insights and solutions.

A nutritionist told me the mineral silica was also very important. Here is the list of things recommended:

1. Mega Dose of vitamin C
2. Water soluble silica (this is all important).
3. Reduction of calcium intake
4. Increase in magnesium supplements (very commonly needed!)
5. Vitamin D (seems to be a cofactor in collagen)
6. Sulfur supplements (MSM, and even Sodium Thiosulfate, etc.)
7. Hyaluronic acid (commonly found in Japanese vegetables or take in supplement form).

Stay positive and keep us posted!

Altamisal

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Anonymous

Date: Wed Jun 3 6:31 AM, 2015
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I want you to know there is hope. I know that you are feeling this way and one point I did too. Have you tried to get a consultation for Intacs? They have been approved for the treatment of Keratoconis or Post-LASIK Ectasia which is a similar disorder but caused by LASIK. Intacs reshape the eye to a more dome shaped normal shape so you would still need glasses or contacts as it is not the goal of Intacs to free you of glasses but you would probably get some stability and be able to be fitted for glasses or lower prescription lenses. There is also cross-linking but it is experimental. I know this is an old post but I'm willing to talk to anyone about the different options. Currently I'm going to undergo Intacs surgery and Conductive Keraplasty for the right eye to both flatten the cornea and correct the the steepening and irregular astigmatism. I was in your situation too but unemployed. The only difference was that I still managed to keep my insurance which I always paid out of pocket before(I just don't trust employer plans as your job could always end at any time). Anyhow, the cornea specialist I'm seeing was able to get my insurance company to agree to cover the Intacs procedure to delay the need for a cornea transplant. It's an expensive procedure but since it is approved by the FDA as treatment for Keratoconus, you might be able to get it covered minus the copay etc. It's worth a try. I also heard about cross-linking but that is not an option currently at least in the U.S. It is really expensive to treat this disease and not a lot is known about it. I was fortunate enough with the insurance agreeing but even so, I still have to pay $1,000 out of pocket. I'm 31 and unemployed. I had no other choice but to reach out to friends and family for help with at least the $1,000 for the copay and I'm fortunate that they were able to help. You can contact me at NoorAdam11@yahoo.com I could help you brainstorm or even see if my doctor's office would be willing to help in some way. Hope it works for you and believe me, I've struggled for 5 years with this and finally just getting some answers and treatment. I'm hoping they approve cross-linking. All the trials are done and cross-linking is the only proven method to halt progression and in some patients improve vision.

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Anonymous

Date: Wed Jun 3 6:38 AM, 2015
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Look here. http://www.eyedefectsresearch.org/vaneed.html

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