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Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 7/8/2009 5:22 PM (GMT -7)   
Hey there Skeye, just wanted to know what's up, if your taking summer classess
and how your doing? Keep us posted with you latest eye exams, okay...I've been thinking of ya
and hope you can get a break from your pain...How much longer will you be at school before
you graduate??? Sorry if this seems repetitive but I forget...
I'm still using an antibotic cream and restasis eye drops for my eye's, it sure can be hard getting
the cream in the upper lids...
Take care my friend and lots and lots of well wishes, Pete should be back next week from
his trip so ask him to post for us, (as we got orientation up at UNT, so I might miss him...)
Lots and lots of soft hugz as always, Skeye
and don't forget those warm eye compressess...I'll keep you in my thoughts and hopeing for a
miracle for ya...
(((((((((((((((((((((((((((((((((((((Skeye)))))))))))))))))))))))))))))))))))))))))))))))))))))))))))
Harry Potter is coming out this week, maybe try to catch a break and relax for a day
at the movies eh...
HUGZ....
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's and Ocular Migraines

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


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 7/9/2009 3:52 AM (GMT 0)   
Hey Char,

You're too much :-)! I was actually pretty sick earlier in the week, thanks to actually getting out of the house & doing something for a change! We went to the fireworks on Saturday night & it was freezing, and of course, the farm that we watch from is always very windy. Even with two blankets, I still managed to catch something. I don't seem to have much of an immune system these days. I think I'm just too run down. So now I'm left with a lovely cold. It could be much much worse, but I still feel pretty lousy.

No classes for me this summer, but I am doing laboratory research on campus, which, unfortunately, is very heavy on microscopy, so it's probably about the worst thing I could do for my eyes. I only have about a month left, and a week of which I'll be at a conference, but I'm just so worn out. Even though I have a summer dorm room on campus, I do a lot of commuting back & forth to home (an hour & a half each way) because of all my doctor's appointments in this area, etc, and that is really hard on me as well. There have been days where I've been stuck at home just because I was too afraid to drive. I do only have one year left before I graduate, but at this point, I'm strongly considering taking time off. I've thought about it every semester, but never as strongly as I am thinking about it now. Most of me just wants to finish & be done, but the practical part of me isn't sure that I can get through another semester, let alone a year in this condition. Something needs to change, and fast. I'm hoping that the rest of the summer will see some changes. I see my neurologist on Friday, and then we'll likely be doing a spinal tap. I'm also seeing a new psychiatrist next week, and my pcp has pulled some strings to get me in with a highly respected pain doc up in Boston -- so I'm trying to stay positive. Easier said than done, especially with the things the docs have been telling me lately, but I'm doing my best.

You know, I forgot that the new Harry Potter movie was coming out so soon! I'll definitely have to go see it at some point! Last time I went to the movies at midnight on the opening day! I loved all the books. I read the first two a while before they became popular! It's too bad that the series is over, although I did like the earlier books better than the later ones.

Have fun at your daughter's orientation! I'm sure it's something that you both will remember forever! I remember mine, it was very new, nerve-racking, and fun experience. I even went on to be an "orientation leader" the following year (a new program that we didn't have my freshman year) & got to foster a group of ~ 15 new students for the first several days on campus.

hugs,
Skeye

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 7/9/2009 6:33 AM (GMT -7)   
Well, here's to being well, so you can get out and see the movie..at least something to look forward to...
Sure hope you get much improved each day, it's been a very cold summer up north, but very hot for us
101 today but with heat index 110, so staying indoors as much as possible.
So far she has two test lined up on the first day of orientation, Music Theory and Math...and an
Honors class Lucheon for the second day...
Lots of soft gentle hugz to you Skeye and plenty of get well wishes, remember the chicken noodle soup!
((((((((((((((((((((((((((((((((Skeye))))))))))))))))))))))))))))))))))))))))))
keep us posted on Friday about what the neurologist says or does...I will be hunting for your posts...
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's and Ocular Migraines

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


Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 7/9/2009 2:58 PM (GMT -7)   
Harry Potter #6 Movie will open on the 15th of July so go and get your ticket for opening day Skeye and enjoy!!!
Hope your feeling better...
((((((((((((((((((((((((((((((((((Skeye)))))))))))))))))))))))))))))))))))))))))))))))))
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's and Ocular Migraines

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


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 7/10/2009 4:24 PM (GMT -7)   
Well, I saw the neurologist. She was very concerned & very understanding. She honestly reminds me of a mother hen! She definitely wants me to have a lumbar puncture done, as well as another test -- brainstem auditory evoked response test? I guess that it is another way of "seeing into your brainstem," as apparently MRI's aren't great at showing a comprehensive view of the brainstem & all of mine have always been normal. So I'm having the LP done on Wednesday morning, and the other test done the following week. I'm pretty nervous for the LP. I shouldn't be. I've never had an epidural or anything, but I have had a handful of injections in my neck that went down to the level of the vertebrae. Those actually weren't too bad, & this probably won't be any worse, but it is still unnerving. The neurologist isn't sure what is going on either, other than that there is something not good. MS still remains a strong possibility, however, the fact that the original symptom was pain (& an injury) is atypical. Basically, no one has a clue, and I have a huge laundry list of tests that are going to be run on my cerebral spinal fluid. Hopefully these tests provide us with some answers. I was telling my doc, that I really don't care what my diagnosis is anymore, I just want to know what it is (and hopefully be able to do something about it)! She also started me on a new med, klonopin, which will hopefully help with my nystagmus (as well as sleep!). I really hope that it helps (with both). The nystagmus in my previously unaffected eye has actually gotten a lot worse since I saw the neuro-ophthalmologist just over a week ago! It really scares me how fast this all is progressing...

Char, if I can get tickets, maybe I'll see Harry Potter on opening day afterall. I was supposed to have a big meeting with the pedi-ortho surgeon that I work for, as well as another clinician, that day, but I will have to post-pone that a few weeks, as my activity is restricted for the rest of the day on Wednesday, so I will have to take it easy (driving a 3hr round trip is certainly a no no, especially since they won't even let me leave the hospital unless someone drives me). A movie sounds perfect!

Skeye

Post Edited (skeye) : 7/10/2009 5:32:55 PM (GMT-6)


golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 7/10/2009 4:42 PM (GMT -7)   
Good luck Skeye, I'm bringing my kids to see Harry Potter too on opening day so I'll be thinking of you!!! An LP sounds pretty scary to me but cross my fingers it gives you some answers, best wishes, golitho

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/10/2009 4:50 PM (GMT -7)   
Skeye,
Is a lumbar puncture like a spinal tap? I've never had one, but hopefully someone else here has. I guess the only thing I think about is reading that you need to lie still for a good while to avoid the headache. But I'm not sure if it's the same thing.

The other test sounds interesting. And it sounds like this doctor is curious and trying some different paths to finding an answer and that's great. Like you said, just knowing would help.

We'll be thinking of you and sending plenty of hugs and positive energy your way!

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

PaLady

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 7/10/2009 6:17 PM (GMT -7)   
Hi Palady,

Yes, a lumbar puncture & a spinal tap are the same thing. You are supposed to lie still for a while afterword, but my neurologist actually said that recent studies have shown that it doesn't make any difference whether or not you lie still. You still want to keep real quiet for the rest of the day, but apparently, if you are going to get a spinal headache, you are going to get one, regardless of whether or not you lie still for a while after the procedure -- you'll just develop one faster.

The other test sounds real easy. I'd never heard of it before, but my doc said that all you do is lie there for a half hour listening to noises while your brain activity is mapped by electrodes. I hope it's that easy! Who wants extra pain?!

Skeye

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/10/2009 8:22 PM (GMT -7)   
That second test sounds kind of neat! At least it sounds like a doctor who's going the extra yard(s) for you!

You more than deserve at least that!

PaLady

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 7/15/2009 3:02 PM (GMT -7)   
Well, I survived the lumbar puncture! It certainly wasn't fun, but it wasn't much worse than the nerve blocks that I've had in my neck. Actually, the injections of lidocaine were worse than the actual tap. They had a little trouble positioning the needle, even with fluoroscopy, but I think it was because I have low pressure in my CSF. I've got a minor headache now & my back is a little sore, so I'm supposed to/ have been lying flat all day so that I don't leak CSF & this thing doesn't turn into a spinal headache! I really hope this give us some answers!

Skeye

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/15/2009 4:59 PM (GMT -7)   
Skeye,
I hope you get some answers, too.

Please try to relax tonight and lie flat to avoid what always sounds to me like an awful headache.

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

PaLady

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 7/16/2009 11:36 AM (GMT -7)   
Awe Skeye,
Sure hope you did not get the spinal headache!
I just got back from up North, for Orientation, my right ear has yet to pop and hurts, plus can't hear much..
Had to be in downtown Houston this morning for blood work and got poked badly, which is bruising..
I'll hope your doing better Skeye and will keep my fingers crossed for you, in hopes of getting a good dx...
Keep us posted...
HUGZ
(((((((((((((((((((((((((((((((((((((SKeye)))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's and Ocular Migraines

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


Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 7/17/2009 8:01 AM (GMT -7)   
Skeye??
Hope your doing okay...
HUGZ.....
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's and Ocular Migraines

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


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/17/2009 2:55 PM (GMT -7)   
Me, too, Skeye. But maybe you're resting.

BTW Char, how are YOU doing?

Hugs,

PaLady

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 7/17/2009 6:10 PM (GMT -7)   
I'm minus 4 tubes of CSF & 2 tubes of blood smhair, but I'm doing just fine. Fortunately, I did not get a spinal headache, yay! smilewinkgrin I did/still do have a minor to moderate headache, but it is no big deal. The percentage of people who get spinal headaches after routine lumbar punctures is surprisingly high, so I consider myself lucky! I'm just exhausted, between the pain, the LP & other pending tests, preparing for the conference next week, and having to commute the 3hr round trip to work every day this week - as I am horse-sitting, so I've had to live at home!

We didn't have any power all afternoon & night yesterday, so hence my scarceness. It did force me to rest, though.

Skeye

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/17/2009 6:28 PM (GMT -7)   
(((((((((Skeye))))))))))

PaLady

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 7/17/2009 7:54 PM (GMT -7)   
Glad to see ya there Skeye...
Rest up when you can and good luck at the conference!
You'll do great there...
HUGZ
Post when you can...
((((((((((((((((((((((((Skeye))))))))))))))))))))))))))))))))))))))))))))
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's and Ocular Migraines

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

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