Hmmmm.... How do I manage it?
Somehow it has just become part of my life. That is definitely not a good thing, but I think that I am able to manage it so well because I am no longer surprised by it. I don't like it one bit, but rather than trying to live my life around the discomfort in my eyes (which is pretty much 24/7 lately) I just carry dozens of vials of tear drops with me (I bought a special make-up case just for eyedrops!), I make sure I have enough of my prescription drops, and I rest when I need to. I have made it a habit to use a cold compress at least once a day (that helps immensely!). I try not to let it stop me from doing what I want to do. I mean, there are just some things that I cannot do, like being outside on a windy day, or being around cigarette smoke, etc... And there are some days when my eyes are so bad that I just have to stop what I am doing and come home (can't tell you how many classes I've missed this semester because of that!) I just try to roll with the punches. Like I said, nothing surprises me anymore. I was totally SHOCKED when I had the corneal ulcer and it took almost 2 months of treatment to go away! But that was over a year ago and I have learned so much about this condition since then. If only I had known about healthboards while I was going through that!
Healthboards and all of the wonderful people here has really been my life support. It's great to have a place to come and share stories, get advice, and just complain without anyone saying "oh come on, it can't be that bad"
I think the most important thing is to have the support of your friends and family members, as well as the support of a good doctor. My parents have always been there with me, driving me to manhattan and brooklyn for doctors appointments....even going so far as to stay overnight with me in Maryland to see Dr. O'Brien at the Wilmer Eye Institute. But it took my other family and friends a while to come around. My best friend still really pisses me off sometimes. But ever since she started getting the occasional eye allergy, she has stopped saying "oh, come on, it's only your eyes."
Even the children in the elementary school that I work at have been extremely supportive. I hear from adults all the time "oh, your eyes look fine, so how can they feel so bad. It can't be true" But the kids are great. "Ms. B, you need a hug." "Ms. B, howcome you need eyedrops?" "Do they hurt?" "I hope you feel better soon." Today, my fifth graders saw me putting in my drops and they got really curious, so I explained a little bit about this to them. I explained how sometimes my eyes get very dry and I don't have any tears. They said "does that mean you can't cry?" We had a nice conversation and I explained to them that when they see me putting in eyedrops, they don't have to be worried because it's normal for me... it's just something that I need to do.
That's what I've come to believe. All this using eyedrops and running to the doctor, it's just something I need to do. It's part of my daily routine now. Get up, put tear drops in (before I get out of bed), brush my teeth, get dressed, use Restasis, have breakfast, use tear drops, go to school, use tear drops, go home, go to the eye dr, etc.... It's all very common for me now. But that is rather sad, that I've had to get used to all of this. The one thing I can't get used to is how other adults look at me funny and tell me there's nothing wrong. How would they like to walk a day in my shoes? I absolutely cannot stand it when people tell me "my eyes were so itchy yesterday... for 15 minutes they wouldn't stop itching." OK, take that and multiply it by 100%, have it 24/7, and then you've got about half of what I (or all of us on this board) have. When your eyes have been giving you problems 24/7 for a few weeks, then come talk to me. If not, get away from me because I'm jealous! I don't mean to sound nasty, but that's just how I've come to feel. Or at least, if someone is going to tell me their eyes are bothering them, then they should try to go to the dr and find out what is wrong, and then follow his directions and do something about it instead of just sitting there and complaining. I take a very pro-active approach with my health. I don't expect anybody else to understand my condition or do anything for me if I am not willing to try to help myself. My dad gets the occasional eye allergy. My entire family has started going to my eye dr. So, my dad makes an appointment with him every time his eyes itch. He gives him an allergy drop and tells him to use it for the entire hayfever season. My dad uses it for a few days and then stops. Then 2 weeks or a month later when his eyes are itchy again, he wonders what is wrong and goes back to the eye dr!
I have to say that basically the entire reason that I have been able to get through this and stay as sane as I am is because I have a fabulous doctor. He has really become my friend. He has never once said to me "YOU are going through a lot." It's always "I can't believe what WE'VE gone through together." or "Don't worry, WE'LL get through this." He is genuinely upset when I come to him and I don't feel well. More than once he has told me "you know, last week when you came in with that problem I was really scared, but I wouldn't tell you then." If it wasn't for him, I never would have survived that terrible ulcer. He took such good care of me. I have quite a unique relationship with him. I feel like he is holding my hand every step of the way.
That's why when people tell me how much of a hard time they are having getting their eye drs to treat them right, I can definitely understand it because I have had other kinds of doctors over the years who have treated me like I am crazy. But I am so grateful for my eye dr. There is truly nothing he would not do for a patient. For example, I have his cell phone number, email address and pager number, and I have been told to use them as much as I want. And believe me, I have done just that! I would never take advantage, but there was a time when there was no other way for me to get in touch with him but on his cell phone. I'm not sure if any other patients have been given that privelege, but I am sure if they needed him he would be there.
Now getting back to friends and family.
The way I see it is this: WHO CARES what your friends and family think... if you know that you are sick and you are suffering, that's all that matters. And if there ever is a time when I want to complain to my best friend (who at times can be very selfish) I basically tell her "look, for months you have been telling me about your problems and I have listened. Now YOU are going to listen to ME and I am going to talk for as long as I want to, and if you are my friend, you'll just listen and offer me a shoulder to cry on."
This may sound strange, but in a way I am glad that there are all of these other people out there with the same problems as me. I would never WANT anyone to have these problems, but I am glad to have people to commiserate with. Chris, it's especially nice that we are both young. I thought I was the only young person in the world with this. Have you ever been tested for Sjogren's syndrome? I used to feel sorry for myself, being so young and so miserable. But now I think this is just part of my life, and if I'm going to feel sorry for myself I'm never going to get anything done.
We all just have to keep going and try to stay happy.
That's not to say that I'm not absolutely terrified that this is never going to get better. I just don't let that consume me. Instead, that fear is what drives me to help myself.
I hope my little sermon here has helped in some way! LOL!
If you need to talk I am always here,
Elyse
Blepharitis / new member introduction
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