I feel worthless...

[hogwildInNJ]

Hi my name is Joe. I came across this site and wanted to thank you all for your strength, bravery and the support everyone gives to others.

I sit here and type with a heavy heart and eyes that feel like needles are being pushed into them. I have DES, a symptom of GVHD from a bone marrow transplant I received in 09 for treatment of Hodgkin's Lymphoma. My DES started about a year ago. I'm not gonna explain all my symptoms you all know what they are.

I work as a network security analyst so I am on a computer 10-12 hrs a day. Working has been so hard, by 8 o'clock at night I just want to shut myself in a dark room and sleep. And even when I'm working the staring at multiple computer screens I constantly use eye drops and cold compresses to make it through the day.

I have been a motorcycle rider for over 30 yrs and DES is making it almost impossible to ride. I've actually put drops in my eyes while riding, not the smartest thing I've done. Last year during the spring/summer I rode close to 10,000 miles, this year I didn't break 2,000

I've been fishing my whole life and now the wind and sun make it unbearable.

I go to my son's games and I can't even find him out there. Of course I don't tell him this but then when he asks "Hey did you see that play I made?" My heart breaks.

I've tried all the common remedies, from a simple cold pack to plugs and nothing really gave me any comfort. My next thing is the PROSE treatment from BFS. They are reviewing my history as I write this.

I don't know what else to do, my career, my lively hood are all being jeopardized.

[Rebecca Petris]

Hi and welcome. I'm so very sorry for what you're going through.

I think you are right to pursue PROSE. I know many GvHD patients who are successful with PROSE. May I ask though, are you wearing any kind of moisture chamber glasses at work? If not I would encourage you to do so. Also check out the various tips on making computer work as dry eye friendly as possible. My personal favorites are something to remind me to blink more frequently, F.lux program to adjust lighting, and keeping my screen low so that to the extent possible I'm looking down at it rather than straight or up (makes a huge difference to how much of your cornea is exposed).

For riding, do you have completely windproof eyewear like WileyX or 7Eye?

I've had a hard time curing myself putting in drops while driving. (Can't hurt my eye since I wear PROSE, but I sure could have an accident.) Just saying I sympathize. Must be even more dangerous on a bike.

[lulu]

I feel worthless...

Hi my name is Joe. I came across this site and wanted to thank you all for your strength, bravery and the support everyone gives to others.

I sit here and type with a heavy heart and eyes that feel like needles are being pushed into them. I have DES, a symptom of GVHD from a bone marrow transplant I received in 09 for treatment of Hodgkin's Lymphoma. My DES started about a year ago. I'm not gonna explain all my symptoms you all know what they are.

I work as a network security analyst so I am on a computer 10-12 hrs a day. Working has been so hard, by 8 o'clock at night I just want to shut myself in a dark room and sleep. And even when I'm working the staring at multiple computer screens I constantly use eye drops and cold compresses to make it through the day.

I have been a motorcycle rider for over 30 yrs and DES is making it almost impossible to ride. I've actually put drops in my eyes while riding, not the smartest thing I've done. Last year during the spring/summer I rode close to 10,000 miles, this year I didn't break 2,000

I've been fishing my whole life and now the wind and sun make it unbearable.

I go to my son's games and I can't even find him out there. Of course I don't tell him this but then when he asks "Hey did you see that play I made?" My heart breaks.

I've tried all the common remedies, from a simple cold pack to plugs and nothing really gave me any comfort. My next thing is the PROSE treatment from BFS. They are reviewing my history as I write this.

I don't know what else to do, my career, my lively hood are all being jeopardized.

Please dont feel worthless, I know how you feel as I am desperately hoping to return to work at some point and this is the last thing any of us need in our lives.
You clearly have already been through some fairly traumatic stuff and this alone is enough to knock the stuffing out of anybody! I think that when you have something that is beyond your control you can tend to feel powerless because you cannot control it and it is so unpredictable.
Like you I am just hoping there is something out there that will change this. I have tended to have flares that have lengthened in time as I have Sjogrens. I get scared and panicky that this is it and that it will not be normal or at least tolerable,but I have taken heart from some of the more positive stories and try not to think too far into the future, but i realise that this is something that is easier said than done. I also try not to pin my hopes on the next drs appointment or a new treatment as I tend to get really down when it does not work. But you are not worthless just because this has happened to you.....
Lulu

[PotatoCakes]

Couple of things...
You are NOT worthless but I know how you feel. Many, possibly all, of us have been there at one time or another. Chronic disease is a special kind of hell and it's a club that no one deserves to belong to.

There will be light at the end of the tunnel. You will learn to adjust and learn to deal with your problem. That said, it isn't an easy road and even when you think you are through the emotional woods, you'll have bad days. Some people can find the light at the end of the tunnel on their own but not everyone can and that is nothing to be ashamed of. It takes courage to admit that you need help and to go out and get it. Sometimes that means seeing a therapist. There are therapists that work with people who suffer from chronic health issues although a good therapist can help regardless of specialty. Sometimes that means going on an anti-depressant, maybe just for a short period, maybe longer term, depending on your needs. You may not need to see a therapist or to explore anti-depressants but if you find that you are in a dark place that you cannot get out of, please do not be afraid to get help. There are many things you can do to lessen your symptoms (moisture chamber glasses, serum drops, etc) but we cannot ignore our mental state either.

Lastly, welcome. Cruise around Rebecca's site. It's an amazing gift of support, ideas and hope. There's plenty to learn and together we can arm ourselves to go out there and get the treatment we need.