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skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 2/10/2009 2:05 PM (GMT -7)   
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

Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2282
   Posted 2/10/2009 2:22 PM (GMT -7)   
Skeye,
Sorry you're going through such a rough time. Is it possible for you to take Provigil to help you keep your mental alertness up? I know that's worked for me in the past. It's not perfect, but it does help. I know some insurance companies won't cover it, but maybe it's something to look into so you can get enough pain control.

good luck with everything,
frances

Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1559
   Posted 2/10/2009 2:57 PM (GMT -7)   
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
What doesn't kill us only makes us fight back harder! :P


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 2/10/2009 3:43 PM (GMT -7)   
Skeye,
I so wish I was closer so I could sit and talk with you and give you a gentle hug. First I want to say try not to make a major decision right now, until you stabilize a bit emotionally (and that may relate to the steriod, plus needing some better pain management).

I know it's hard. I know you're a fighter and enormously talented. I don't know for sure what the "answer" is for you at the moment, but I think you need help making the decision. What about your professors? I thought a couple of them were very supportive. Maybe let yourself have those good cries (hopefully it doesn't hurt your eye even more), maybe go for a walk, listen to some music that inspires you (and that's a personal choice), and make some appointments with those professors.
Talk with them about your options. What do they think? You may feel worse, and that can lead you to evaluate your performance differently than y our profs do. See if they think taking a break would help (like a semester off), or taking fewer courses. You're going to have to reshape how you go through school, I think, but that doesn't mean giving up on it.

Let me know how I can help.

Hugs AND cheers,

PaLady

Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 2/10/2009 5:56 PM (GMT -7)   
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
55 years old, Surgury, Radical Prostatectomy 8/20/03, PSA 6.6, Gleason 3 + 3 = 6, Adenocarcinoma extent (moderate) Stage & Margin:T2NOMX, No Metastases, Organ Confined, bone scan: Neg. 3 1/2 years of depression after surgery prior to Hypogonadizm DX, Testosterone Theropy (Testim Gel)since 12/06 but switched to a higher dose of (Androgel) 6/08. 55 and still alive and so glad to still be here to see my two sons grow up to be fine young men. They are both serving in the US Navy, one on an aircraft carrier heading for Hong Kong and the other on a Gator Freighter stationed in Norfolk, Va. I am one proud PaPa! 


Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 2/10/2009 6:06 PM (GMT -7)   
awe, Skeye, hang in there, have you talked to your doctor about using an antibotic eye cream, something you could put on
the eye as it might help better than any oral pain med. or maybe an eye drop something that would relief the eye itself?
Just my 2 cents worth of advise and of course ya know you always have my shoulder and
plenty and plenty of soft hugz..
So wish I could help ya better...
your friend Chart,
p.s. try to stay with it (you've made it through this far) spring break will be coming soon, try to think about that..
and vent all ya need to.........
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd, Enlarged Pituitary Gland
******** "We could never learn to be brave and patient if there were only joy in the world" from Helen Keller *********

********>^..^<********>^..^<********>^..^<********


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 2/10/2009 8:41 PM (GMT -7)   
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

ryand
Veteran Member


Date Joined Dec 2007
Total Posts : 639
   Posted 2/10/2009 9:06 PM (GMT -7)   
Skeye:

I'm thinking of you and wishing I could do something to help! I wish we could share our good "parts" with each other occasionally to help one another through the rough patches! I'd send you my eye in a heartbeat. (Imagine the poor postal workers if that could happen...eyes, knees, necks & spines zooming through the mail! smhair)

You've accomplished a lot more than most people could in your shoes. It is so hard to be alone and in pain like this. I completely understand what it's like when nobody around you understands what you are going through. We had another thread awhile back where we joked about having a condo for all of us who were single to live in so we could hang out together... I think it's not a bad idea at all! :-)

(((((skeye))))))
Ry

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 2/10/2009 9:51 PM (GMT -7)   
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
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 2/10/2009 10:07 PM (GMT -7)   
Oh Ry, you've got me laughing! That would be quite a sight to see! shocked

Palady, you can rest assured that I'll be talking to one or more of my professors within the next week or so. I think I'm going to try to call my doc's office tomorrow too. I was going to wait until Monday when I finish the steroids, but since they haven't done anything by now, I'm sure they aren't going to do anything over the next several days & I want off of them, so hopefully he'll tell me they are okay to stop & maybe then I can get a head start on figuring out what is next.

skeye

Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 2/10/2009 10:12 PM (GMT -7)   
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.

Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2282
   Posted 2/10/2009 10:22 PM (GMT -7)   
Skeye,
I'm sure you've already thought of it, but I thought I'd mention it anyways. The University of Illinois at Chicago (UIC) hosts the Illinois Eye and Ear Infirmary (in their Dept. of Ophthalmology & Visual Sciences). I know they are one of the leading researchers in visual impairments, though I have no idea whether they would be the best route for your condition.

I have been to the UIC Medical Pavilion to see their neurosurgeons & was quite impressed, but I have no first hand knowledge of their neuro-ophthalmologists, just a few friends who have had tough cases who ended up there & were helped. One had his vision substantially restored after an infection decades prior had taken approx. 70% of his vision. UIC in general seems to be quite good at treating pain & regularly compounds special medications for patients.

I don't know. It's probably a dumb idea & you already thought of it, but I just feel so bad that you have to keep suffering so much when all you want to do is wrap up your education. I will be praying that things work out for you both with your angry little eye & with your coursework/clinical hours. Too bad you can't just ship your angry eye around the country for diagnostics while the rest of you goes to class. :( Sometimes I hear the politicians talking about creating a good bank & bad bank and I wish we could do the same with our bodies. We could just make one giant pile of all the bad parts (your eye, my head, PA's back, etc...) and let them keep miserable company with one another & then we could put all of our effort and hope on strengthening the remaining good parts. Well, it's a nice dream anyways. :)

feel better,
(((((lots of hugs)))))
frances

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 2/10/2009 11:13 PM (GMT -7)   
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

Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1559
   Posted 2/11/2009 12:27 PM (GMT -7)   
Ohhhhhhhhh PA can I have a Bionic back and a pair of legs????? Of course you have to throw in the feet as well :-D
What doesn't kill us only makes us fight back harder! :P


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 2/11/2009 9:43 PM (GMT -7)   
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)


Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2282
   Posted 2/11/2009 10:10 PM (GMT -7)   
Skeye,
One thing I would point out is that if you do come to UIC & they can't help that there is a whole cluster of hospitals right in that area. Within a block or two are Rush Presbyterian St. Luke's Hospital and Stroger Hospital. Within 15 minutes is Northwestern Memorial Hospital and just a little farther away (20-30 minutes drive) are Loyola University Medical Center and the University of Chicago Medical Center. The hospitals, while not networked together, all routinely refer patients from one hospital to another if it is a rare condition that they don't treat at their facility. There are a ton of other hospitals in the area, but all the ones I've mentioned are major teaching/research hospitals. UofC and Rush have phenomenal neurosurgical programs. Loyola & Northwestern are renowned for vascular surgeries. Stroger is a top-tier trauma center (it is the hospital featured on the TV show "ER"). Besides being a large teaching facility, it is a public hospital so they get all kinds of crazy cases. On occasion, they actually have a surgeon experienced in some super rare surgery only b/c they get both the poorest people who don't get treated early enough & they get the worst traumas in the city so they get some of the wealthiest people at their worst time.

The unenviable decision is up to you & your doc, but I just thought that maybe it would make a difference if you knew that even if they can't help you at UIC there is a decent chance they could refer you to another local hospital for care. Plus, once you get all fixed up I can be your tour guide around my beautiful home city (& we gotta get you fixed up if you come here. Chicago's too amazing to not be able to look around & enjoy it all. :)

sweet dreams,
frances

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 2/11/2009 10:27 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. 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

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 2/11/2009 10:53 PM (GMT -7)   
Skeye,
I hope you can get the reader. That sounds like a great device! And technology keeps coming up with more and more every year.

PaLady

Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2282
   Posted 2/11/2009 11:40 PM (GMT -7)   
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

AndreaRN
Regular Member


Date Joined Mar 2007
Total Posts : 91
   Posted 2/12/2009 7:50 AM (GMT -7)   
If you have not yet...please consider the Philips Eye Institute in Mpls, MN. They are miracle workers......

Here is the link
http://www.allina.com/ahs/pei.nsf/

ps, I had surgery there a year ago and was impressed with all the staff. Andrea
Women who behave don't make History!

C3-4 herniation
C4-5 disectomy & fusion (anterior)
C6-7 & C7-8 L laminectomies (posterior) (need R)
Partial removal of supporting Cervical Posterior Ligament
Constant shoulder pain & tightness.intermittent neck pain
bulged discs at C6-7 & C7-8

Vicodin 7.5 for pain
Atarax 50mg q 6 hours for pain
soft collar and heating pad best friends


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skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 2/12/2009 8:57 PM (GMT -7)   
Thanks Andrea!

Skeye
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