been scarce

Hi everyone,

I just want to apologize for not having been around for you all for the last week. I've been having a really rough time lately. My pain & my vision are both out of control, and of course all this reading that I have to do makes it even worse. Not to mention not sleeping, which has been worse too (if that's even possible), since my eye just screams at me all night long, even when I'm finally asleep I still feel it killing me. I'm barely functional right now. I came very close to calling school quits this weekend. I drove back to campus Sunday, pretty much hysterical, tore apart my entire bed & then sat there for an hour or two trying to decide what to do - to put it back together & keep going, or pack everything up & leave. I came to the conclusion that I am too terrified to drop out, even though I think it is probably what I should do. I still desperately don't want to give up & it is easier for me emotionally to keep fighting, so that's what I'm still trying to do. I guess it is just going to be another semester from hell, but I'm the one to blame for that.

I did see my doc last week & we're going to try dilaudid, but so far it has not helped at all, although I am still hoping that it is going to help, as I seem to have a pretty high natural tolerance & I am not yet up to any kind of maintenance dose. I'm really not happy about going back on pain meds (I had been off them for several weeks), they scare me so much, & I hate losing any of my mental clarity, but I don't see how I can keep doing this. I just hope this time it makes a difference as I haven't had much luck in the past. Honestly, I'm ready to rip my eye out. I really just don't want my eye anymore. Someone else can have it (although I would NOT wish that on anyone). It's not worth it, feeling this way. I'm just such an emotional & physical wreck at the moment. There is no one here to talk to, as no one understands. Every time I try to talk to someone I just get more upset because they so blatantly don't understand and end up making me feel even worse. I finish my course of prednisone next week. It hasn't helped at all (unfortunately, as expected) & I'm terrified that my docs are going to be out of ideas as to what to do next. I don't know that I can face the fact that there is nothing left to try, or lose what little hope I have left.

I hope everyone has been having a much better week than me!

Skeye

awwww Skeye I am so sorry hun. I do hope that you are able to find a middle ground somewhere along the way. Sending you big hugsssss and a bright red flying Corvette to fly away with us to Hawaii.

Hugs

Scarred

So sorry to hear about your pain Skeye> It really sucks no one can help you. I don't know where you are or forgot or what king of Doc's you are seeing but maybe it would be worth it for you to see someone at one of the big famous medical centers like Johns Hopkins, Cleavland Clinic or the Mayo clinic? Sorry if you already have but was just trying to think of something. I wish I could help you somehow. To know a freind even a cyber friend is in so much pain just twists my guts, I just want to help somehow.
Your Buddy,
Pete

Frances, Scarred, Palady, Pete, & Char, thank you all so much for your kind words, they mean the world to me.

Palady, I have not talked to any of my professors this semester, in fact I've been avoiding it despite knowing that I should go talk to them. I do have several who are very supportive and know me very well. I'm just not sure that there is anything anyone can do at this point. I don't think I can drop any classes like last semester either, as I'm only taking 2 because I'm doing an internship in a hospital for most of my credits, and one of those classes is associated with the internship. If I get through this semester at least I'll have a couple of months to decide where to go from there. I wish that there was a straightforward answer.

Pete, I've been to Columbia (and I refuse to ever go back there again, as I have never been so horribly treated by a doctor, even my mother, who was with me, was shocked at how horrible this guy & his slew of residents, fellows, etc, was to me). I'm working with a doc from Yale at the moment, although he is very closed minded & I think after I report back to his office within the next week, I'll be done with him. He isn't really willing to take any guesses or risks, he's basically told me that he's not sure what's going on and good luck. I'm thinking about flying out to Iowa over spring break to see another doc, but I'm not sure it will be worth it. I need to talk to my ophthalmologist first, it partly depends on what he is thinking is going on these days, because this guy is the closest thing I can find to a specialist on what we had been thinking was going on. Other than that, I'm stumped. I looked into going to John's Hopkins, but it didn't look like they dealt much with this type of thing, they seemed to be more into retinal problems. The really frustrating & problematic thing is that my eye looks decent on exam, but it's clearly not okay. The majority of the problems are occurring behind the eye itself & that area is really hard to visualize, and MRI's etc can only show so much detail - apparently not enough. I always get really upset every time I go see someone & they can't give me any answers. I need to learn not to get my hopes up.

Char, since all my pain is actually behind my eye, eye drops are unfortunately not usually of any help. Occasionally dilating my eye will give me a little relief, as my focusing muscles tend to go into spasm, and resting them for a while can help, but it usually helps more with vision than pain. I actually did dilate my eye on Sunday & it will likely remain dilated for the next two weeks, as in the dark, at 2 am, I could only find my long lasting drops, rather than the shorter acting one that I prefer. Unfortunately it didn't help at all, it's only made it even harder for me to read! Now I'm starting to regret my desperate decision! I do tend to get inflammation in my sclera for a few days every couple of months (I can almost predict when I'm going to get it, it's been like clockwork since the injury) & then steroid drops help, but that's the extent of it.

Skeye

Skeye,
I hope you don't mind but I'm going to give you another little nudge. Go talk to at least one of your professors. They may know things, possibilities that you don't. Ways to maneuver your courses and path, especially with as talented as you are. With you thinking like this, you're not likely to come up with new ideas. Let them help you at least do a little brainstorming.

I know it's not easy. And if you need to take a break from it all, that should be one of the options on the table for you. Don't beat yourself up about it. But don't decide it alone.

(((((((((Skeye)))))))))))

PaLady

skeye,

I'm sorry to hear you are in so much pain. I can't imagine how hard it must be for you.

If you took time off, what would you do? I know from experience it is really hard to go back once you leave school but sometimes that is the best choice.

I think everyone with a chronic or not yet diagnosed condition gets their hopes up before a doc visit. I've been dealing with my stuff for about 20 years and I still get my hopes up.

As for the doc in Iowa, will you be ok if you don't go or will you always wonder if he might have had the answer?

I hope you get answers and relief soon.

How about a bank of Bionic Parts where we could go make exchanges? Maybe Bionic Woman knows something we don't?? ;-)

Skeye - Frances' post reminded me that Cleveland Clinic has a way to do electronic consultations. I wonder if Iowa does, too. You have to pay privately, but at Cleveland you send them all your records and then do the rest via e-mail and other eletronics. Sort of an upscale second opinion. You've probably thought of this already.

Anyway, I hope your eye starts to feel at least a little better.

PaLady

Dagger, what I'd do if I took time off is a very good question. I suppose I'd have to get a job. That's one of those things that I don't want to think about, and am too overwhelmed to think about at the moment, as I have no idea what I'd do & don't think I'd really be happy doing anything other than school.

Frances, I know I've heard of the Illinois Eye & Ear Infirmary before, but I've never actually looked into it. I'll do that. Thanks! There is an Ear & Eye Infirmary up in Boston too & they are supposed to be really good as well, so that's another place I'm looking into. It's just so tough because I don't even know where to begin with specialists since we don't have a real good idea of what is going on & my eye doesn't show anything too thrilling on exam. You're idea is not stupid in the least, I really really appreciate any suggestions!

Palady, I've never heard of electronic consults before, so I have no idea how they work! I'll have to look into that. Thanks for the suggestion.

They ought to have a store just for new body parts!

Skeye

Some good news though, I think that I may have found some place that sells handheld readers, so I would be able to scan my text books & the device would read it back to me (albeit in a syndicated voice). I'm going to try to go check it out this weekend, as long as I get out of work on time on Saturday. I really hope it works out, because this should make all my reading so much easier on my eye!

Post Edited (skeye) : 2/11/2009 9:58:12 PM (GMT-7)

Oh, wow! I guess that is the great thing about living in a city! It's the complete opposite where I live! At school there are two major hospitals practically across the street, as well as the former premier psychiatric hospital in the world. But they aren't great for eyes. . At home, there is basically nothing. I have to drive at least half an hour to get to any of my docs & more like an hour and a half plus to get to a sizable hospital! Sometimes I think it would be fun to live in a major city with everything within relative walking distance, but I'm really a country girl at heart.

Skeye

it has it's advantages. :)

I went to school out in the country so I can see why you like it. There was one hospital 30 minutes from campus & another 50 minutes from campus. Neither one of them were especially good at much of anything. They were both especially bad (though perhaps slightly better than campus health services) at diagnosing bronchitis. I think a lot of those docs dreamed of living in the big city so they would test for all these stupid things that I was sure it wasn't (like AIDS-related pneumonia- probably not a good chance I had that since I didn't have either HIV or AIDS) & wouldn't even consider it might be bronchitis which I got faithfully every November.

The hospitals in Chicago are pretty useless for routine care. The doctors are all these hot-shot types who can't be bothered unless they think they can get your case published. I drive an hour out to the suburbs for a lot of my appointments. My PCP is at a local hospital just b/c it was getting to be a hassle to get admitted to the ER down the street from me without having a doctor on staff. They do teach at her hospital, but have small classes & don't do research so it's kinda the least evil of the alternatives. Honestly, who wants to have a dozen people running in and out of your room every five minutes when you're in excruciating pain? All of that said, I think my aggravation could work to your benefit. I will say they were all jumping through hoops when I first got diagnosed with Chiari (which is a lot more common than your eye problem, but still labeled as a rare neurological disease -- I can't imagine what they would do for something even rarer- lol). Everyone I saw wanted to point out something new & explain why they & their proposed treatment were the best. I hear horror stories from people with Chiari in other parts of the country who've gone decades before getting a proper diagnosis, so I do have faith that there's a reasonable chance they could figure out what's wrong with your trouble-making eye. You would certainly not be in want of attention - they would probably all be tripping over each other in a race to figure out what's wrong & then to find a way to fix it. ;)

I'm so glad you are going to get a reader. That's fantastic! I imagine it will make a big difference in your studies. Good luck with that!

frances

Thanks Andrea!

Skeye