Sad

[AccutaneJay]

I feel very sad tonight. I told myself I wouldn't break down and cry today, but I just can't keep from it - the tears have taken over tonight. I haven't cried in a while, and I'm scared that I'll fall back into a depression. God, this is so hard. I don't know how long I can tolerate this. I really regret taking Accutane, and I am so tired of my crohn's disease and my burning eyes.

... give me the strength to overcome this and take things day by day... give me the hope that perhaps in the future things will get better... give me the love that will help build both of these things... and give me the wisdom to see that I am not the only one struggling with these problems, and there are others who are worse off than me and I should be thankful for what I have...

Thank-you for this board... it is therapy for me.

[Julie1]

Jay,

I understand where you are coming from. I had one of those days today. I've been so exhausted and tired lately that I fainted at my desk at work today. I ended up going home, not because my eyes hurt but because I was so exhausted that I couldn't function. I'm kind of worried now about the possibility of other health problems, but my gut is telling myself that it's just the depression and anxiety that's coming through. I also told myself that I would not cry but I just couldn't help it either. I was talking to my mom tonight on the phone and the tears just kept coming out. I feel guilty for being sad because I am not the Julie that people used to know and love -- I am a sad Julie. I am trying to take it day by day and to be grateful that my eyes are much better than they were a year ago. I want them to be completely better, but that's not likely to happen anytime soon.

It's okay to be sad. Is there something that makes you feel happier? I mean, is there something that you can do to take your mind off your eyes? It helps me to talk to my friends on the phone while I am doing a warm compress or putting ice on my eyes to take the swelling down. Do you have someone that you can call and cry to on the phone? I think it really helps me to know that there are people who will listen to me cry, give me a hug, and help me to feel better about myself. If you ever need to talk, you can send me a PM. I know that this is hard.

Julie

[AccutaneJay]

Thanks for reaching out, Julie. Yes, I do have my mom I can call and cry too, but before I was doing it a lot and she would keep suggesting I see a doctor and go on medication. I refuse to go on any more darn medication. It is modern medication that did this to me in the first place. I can make it through this myself and with the strength of others, like you. So, I am hesitent to call her because I think it exhausts her to have to receive it. This is mainly why I have gone all out and decided to reach out through this board for support. It isn't quite the same, but it is helpful.

I like to listen to music and that is what I am doing now. I like to sing too, so I just sing when I feel like it to help keep the tears away, but sometimes it draws it out. Mostly, I just hope to cry until it is all out - I have to in order to help express my emotions out, otherwise they'll just pile up and overtake me.

Julie, that is another thing that makes me sad, is that I'm not reaching my potential... I'm not who I used to be anymore and it is just scary sometimes, and it takes time to get used too. I have to learn to let go of it and accept what is here and now, and simply breath in, breath out, and move forward. I have to keep hope. I cannot keep thinking that things will not get better. It is so easy to think that things will never get better, but I cannot settle with that. The thought that they won't just overwhelms me and I break down. I tell myself that I have to give it all time, but sometimes I feel like I'm just lying to myself. I just have to get this out of me and cry it out - I will feel better soon, but thanks to everyone for bearing with me while I proces through this.

Julie, I'm sorry you've also had a hard day. I'm really sorry that you passed out - it sounds like you are under a lot of anxiety and pressure. I really hope that things improve for you and you find the stress relief you need and deserve. I wish there were something I could do to help, but I know how difficult it is to help someone with our problem. Just remember that you're not alone and that we're all here for each other. Gotta continue on each day, day by day. Gotta keep hope that things will get better.

Take care,

[Lucy]

Jay, I read your post and it makes me want to cry. I'm not much of a softy, or touchy-feely person--can't you tell? LOL. You have my sincere sympathy.

I can't add much here, as you say you don't want to take meds and that's your choice. I think mothers are the best people to talk to, being one myself. If talking to your mother brings up issues you'd rather not deal with, best to seek other sources--this board being one. It is amazing how much we help each other. I've spent a number of years ranting about dry eyes/lasik gone bad...etc and I feel it has helped me cope. I can also help others who are newer to the situations.

I had a pretty decent day today. I went to my water exercise class and it was ten degrees here, so it took some effort. Living in Columbus, you know about cold weather, too. I find it beneficial for me to get structured exercise because if I don't the Sjogrens is going to take a faster toll on me. It also takes my mind off my eyes for a bit.

Stay strong, you know what to do and you are doing it by going day by day. Some days are, indeed, harder than others. Personally, I believe this time of year is worst for feeling down or depressed. Have you thought of going to a tanning salon and getting a little artificial sun? I know, I know all you who are going to lecture here.........I know the ramifications of tanning. But, I do think a "shot of sunlight" can help get us out of the doldrums. Just a thought.

Lucy

[AccutaneJay]

Thanks, Lucy. I appreciate your post. Yes, I've been getting exercise each day regularly - I think this helps a lot. And I used to do tanning, but don't anymore. I've read that the tanning is mostly UV-A rays and not the UV-B that actually helps generate vitamin D which is usually why people feel crappy in the Winter. So, I have been taking extra natural vitamin D from fish liver oil (no fear of toxitiy, as it is the safe, natural D3 form).

It's just the course this dry eye brings me into - it's just hard sometimes, and thinking of the potential difficult future just scares me and really overwhelms me sometimes.

[YGB]

and thinking of the potential difficult future just scares me and really overwhelms me sometimes.

Jay - I would recommend seeing a good therapist. I know that when you are depressed, even seeing a therapist sounds like a bad idea. However, talking to a good therapist for 45 minutes about once a week can really help in the long run. Also, "go for it" with regards to trying to get out of the depression without medication. However, keep an open mind to the concept if needed.

I know that in my case, I was on 20mg prozac for about a month and still very depressed about 6 months ago. My therapist recommended that we up the dose to 40mg to help me better cope. I took this as a challenge and stuck to the 20mg. I guess in your case, you want to try to manage with 0 mg. Perhaps a relatively low dose may ultimately be a good compromise or maybe you will find the strength to tackle this great challenge on your own.

We are a lot more resilient than we give ourselves credit for. Also, I assure you that while the future always looks dark and gloomy when you are depressed, you realize when you get out of the depression that the future does have hope. I know it will help a lot when your eyes improve. I am confident that they will. However, it will require diligence. Rather than not doing dry eye therapy on good days, maybe do an extra therapy on a good day (or at least the same amount). Keep the faith. The future is not as dark as it appears in your side view mirror (hmmm...I guess looking in your side view mirror would likely be a metaphor for the past and not the future, but you know what I mean). Best. YGB

P.S. - I believe you have evaporative dry eye based on a prior post. If so, then I would recommend goggles. You can get a good pair of Wiley-X goggles on eBay (or other sites) for about $45. The pricier Panoptyx are also a good option. Goggles really help folks like us more than most things!

[kitty]

I think we all have these days. Rather than think about how bad your future could be with DES, try thinking about how your future will be with your DES better managed. Sometimes it helps to force yourself to think in terms of the positive rather than the negative. Thinking in the negative just creates a cycle of further negative thought. Are there things you can do to help others? Go visit a lonely person in a nursing home or assisted living facility, volunteer to deliver meals on wheels, take someone's dog for a walk. Do something nice for someone. It helps take the focus off of yourself and it really helps you feel good. This is what I do. If you cannot get past the negative thoughts, consider getting some counseling. I get really tired of new and chronic health problems cropping up. I go to the doctor, come back for all the follow-ups and in the end am told I am getting old, there is nothing they can do, and here, take a pill, use a drop, get some exercise, eat better. That will be a $50 co-pay please! Dang, I look in the mirror and see the gray hair, but I really don't feel that old! I find it more positive to stay away from the doctor and spend that co-pay money on someone else!

[Julie1]

I also wanted to add a couple of quotes that I have posted both at home and at my desk at work. When I need a boost or some encouragement, I read the quotes. One of the quotes is from Erik and the other is from Indrep (both members of the DEZ). I have found comfort in these quotes.

"Make the promise to yourself that you will outlast the pain."
-Erik

"Depression lives in the past. Anxiety lives in the future. Happiness lives today. We can't change the past, the future may not come, but we can be happy today with what we have."
-Indrep

I know that it's not easy, but it will get better!

-Julie

[Rebecca Petris]

... that is another thing that makes me sad, is that I'm not reaching my potential... I'm not who I used to be anymore and it is just scary sometimes, and it takes time to get used too.

Mind if I give my perspective on this...?

The unexpected and, usually, unwanted challenges of life don't limit our potential: they push us to reach beyond the limited confines of what we once thought our potential was. Sure, you are not who you used to be anymore. Even if you hadn't gotten dry eye, you wouldn't be - but this is probably making you change more and faster. It's not as though your character and life path are something fixed that has been altered, or are predefined destinations that a chance circumstance like chronic eye disease can somehow obstruct before you reach them. When you look back on life it's so often the difficulties you encountered that you find have most enriched your life and your perspective and your relationships and, yes, your potential. - When you've had Destination A in mind for awhile and the path veers suddenly to the left and you're now staring at Destination Unknown, it's scary. Your emotions scream out to get back on the old path but there's no way back. It's hard to embrace a new destination, and there are no rules about how to do it or how long it will take to let go of the old one - or how many tears need to be shed or whether to shed them or hold them in! But once you're able accept the idea of embracing something new, it's incredibly rewarding. - Says one who has let go of many cherished destinations over the years to embrace some scary unknowns.

I know I sound like an old fogy giving a philosophical lecture. Truth be told I'm only 37 myself but I feel about twice that sometimes and I figger I have enough well-earned grey hairs that I can indulge the inclination now and then.

[Peggy]

"that is another thing that makes me sad, is that I'm not reaching my potential... I'm not who I used to be anymore and it is just scary sometimes, and it takes time to get used too. "

Jay,
That quote definitely describes how I feel on a daily basis and I truly feel I know what you are going through! I think everyone on this site will give us permission to be sad every once in awhile and then support to keep on going and know that maybe there will be bright spots in days ahead that tell us there is still joy to be found. When I am with a group of people and they talk about things I have accomplished and if I can now do certain things I say thats the old Peggy the new Peggy cannot do that anymore and it kind of breaks my heart. I know this is a very bad habit and I am getting better...I think the hardest darn thing with this situation is Acceptance and then as Rebecca said we have to realize what new direction this is taking us and find the potential and goodness it can bring to us. Not always an easy task but you sound like you have alot of strength ...trying to stay off meds, exercising etc. through this ordeal. Its wonderful that you can share your feelings and use this as therapy because you know we are all rooting for you and hoping for better days ahead for you. Wishing you well and thanks for describing how I feel, its a great feeling to know there are other people who understand totally what you are going through. I think Julies quotes are good advice and I am going to copy them and hang them around the house and work!!(Thanks for collecting them Julie) Take care Peggy

[Julie1]

Thanks Rebecca! I'm adding Rebecca's thoughts to my quote collection! Your quote made me shed a few tears myself.

I'd like to add a personal reflection. I have a severe hearing loss, resulting from meningitis when I was two years old. I have no hearing in my right ear and about 25% in my left ear. With a hearing aid in my left ear, I am at about a mild loss. It has been a challenge (although not even close to the dry eye challenges) to overcome, but somehow I've been able to function normally in the hearing world. I was mainstreamed in school, speak normally, went to college and am working at a job that requires a lot of phone time and meetings. Somehow, I've been able to do it, and I am a stronger person for it. I don't think that I would even be Julie if I didn't have the hearing loss. I often wondered why I got the dry eye when I wanted to do everything in the world to protect my eyes. Sometimes, I become very envious of my sister who has never had any health problems, but I have to let that go because it's not my sister's fault that I got dry eye.

Dry eye is horrible, and I would give anything to go back to my pre-dry eye days just like I would give anything to hear normally. However, Rebecca has some great points -- I wouldn't have met all you wonderful people if I didn't have dry eye. I wouldn't realize what a wonderful boyfriend and family and friends that I have if I didn't have dry eye. My faith in God would probably still be very shaky. I am changing but perhaps I now have a more mature perspective on life than other 26 year olds. I may end up changing my career because I don't know how much longer I can handle working in front of a computer every single day, and that's what makes me sad. But, life goes on, and I have to go on. I don't have any other choice.

[AccutaneJay]

Thank-you everyone to everyone for your replies! So many posts that I don't know that I'll be able to personally reply to all of them in detail, so just know that I've reviewed all of them and thank each of your for lending your support. I knew that I would be met with words of encouragement and motivation by reaching out on this forum.

Rebecca, your perspective with regards to my/out potential is very eye-opening and refreshing. I have a book on budhism that speaks of focusing on the current moment... the right now... always come back to Now. This is difficult and takes quite a bit of practice, but I try to keep this in mind and not think of what may be down the road, or what has been in the past, as this only leads to negative thoughts and sadness. Thanks for sharing.

My Crohn's disease plays a lot in my sadness and depressive state I think, because when my stomach is not doing well, I just feel like I'm in the dumpster - and there is such a strong brain-gut connection. I have a very strict diet & supplement plan in place and will continue this indefinitely. YGB, as far as my dry eye treatment, I have been very successful in maintaining a consistent routine: I warm compress with my homemade panty-hose rice baggy usually once in the afternoon while I'm at the office and then do a warm washcloth compress in the evening just before bed, I then use TheraTears throughout the night to avoid night time dryness. I've found that tears during the day don't really aid me much since my condition is mostly (if not all) evaporative. Even on good days, I've finally gotten it through my head that I must be consistent with my treatment. It is when I have bad days even after being consistent with my routine that really crush my hopes of improving and really just brings me down.

Julie, thanks for the inspiring quotes - I've written them down to focus on here at the office.

Kitty, thanks a lot for your suggestions about volunteer work and helping others. I've been meaning to reach out and find something rewarding like this to do. I really will try hard to set something like this up. I really want to volunteer at my local state park, but with it being Winter, I haven't heard much back from them b/c I don't think they have much to offer right now - plus it's Winter and I don't know that I really want to be out there in the temperatures we've had lately anyway. I also agree with you about saving your money and using it on someone/something else. I've found little assistance from my medical professionals over the years and have very little faith in their ability to help me - it is unfortunate, but just my experience. I have learned to trust more in myself and my own abilities and knowledge - I have to look out for myself, although I really wish I could find more people who are looking out for me than just me. With that said, if I come to expect this, then I must become that type of person who cares for others! How can I care only for myself and expect others to care for me when I am not caring for others? It is certainly a contradiction and something I want to change. Thank-you.

Peggy, thank-you for sharing your thoughts. I also find it comforting to know that I am not alone - I've said this many times, but it certainly does help. I'm glad I can come here and share my feelings and be met with positive responses with reinforcement such as yours.

Take care everyone.

[blueeyes]

I understand

I can't believe what everyone has written here. I always thought I was so alone in how I felt. At least now I know how many of us feel as I do. I also try to take it one day at a time. How my eyes feel in the morning really dictates my day. I am so tired of DES running my life instead of me being in control. I try to keep busy working and taking care of my husband and kids in the hope one day this will be better. Some days I don't think it will ever happen and other days I think it may be possible. I also tell myself that today I am not going to cry, but it doesn't always work. My husband doesn't know what to do with me at those moments. I was always the rock, the strong one, but no longer. I have changed so much in two years and as I write this I well up with tears, still not able to accept what has happened to me both accidently and self induced thru lasik. I continually wonder what the future will hold for me and will this just get worse with age. Well, thank you all for your thoughts it was so helpful.

Terri

[indrep]

Jay,
I do not have to bear the burdens that you have. However my wife does and has for over 20 years. She is not the person I married and I have posted her health issues in other posts. She is better than the person I married. She is a survivior and example for others. You do not know your potential, your perserverance in spite of your problems might inspire someone else to reach beyond what they thought was their best. You may never know who you have inspired.

I am going to brag on my wife a little here. She has chaired or co-chaired a fund raising committe for five years, she did have to give it up last year. But during those five years she helped raise over 2 million dollars. Her efforts even on days when she could hardly walk helped others realize potential they didn't know they had. She has been and is a great mother and wife and while her "work" years were few she has inspired others to be the best they can be today. Hopefully those people will inspire others.

You too can inspire others Jay. Yes there are days when you will need to get rest and be down. But most days you can and will be an inspiration to others because you are a survivor, someone who can overcome the hardships and make the best of each moment you are given.

Don't give up on doctors, while you had a bad experience earlier there are many good/great docotrs out there. I sympathise with each of you on this board who are suffering. My prayers for you to have strength and courage to get through each day are made daily.

[dianat]

Indrep's words are special ones, Jason. You have a lot of inner strength to call upon. And your example can indeed contribute to the success of others, and your own future success.

Your job is to do for yourself everything in your power to make yourself the best you can be. You health and comfort comes first and foremost. You do need to consider building a relationship with an eye doctor with whom you are comfortable. And with his/her help, you must find the eye routine that works for you...and stick to it. There are so many things left for you to try!

I have been wanting to make this recommendation to you for some time. Have you considered lowering your monitor at work so you have to look down at it instead of straight across? I believe Rebecca made this recommendation some time ago.

If you are looking down at a monitor, your eyes are at least half closed. This could really help in the dry, hostile environment of an office. There may be desks available to you that are adjustable. I'm not really sure. Your employer would likely be open to helping you create a healthly work environment. The more comfortable you are, the better you'll perform.

Good luck, Jason. Keep the faith.

Diana