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skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 5/5/2009 2:39 PM (GMT -7)   
Hi everyone,

I would have been online throughout my ordeal last night, but I was in too much pain to see/read straight, so I had to go it alone. Last night was perhaps one of the worst nights I've had! I was in a rather incredible amount of pain & just nothing was helping. Forget sleeping. The fentanyl patch is clearly not working (at least not the dose that I'm on now). Plus I was incredibly nauseous from all the pain. I'm almost always mildly nauseous from pain, but nothing like that. I think I'll have to speak with my doc about that when I see him later this week. Then, when I woke up this morning & looked in the mirror, I saw that my eye is even more swollen than usual & is almost black & blue around it! I can't explain it, and I know it isn't just me being over sensitive about it because I had my roommates look at it & even they (who normally don't notice a thing) noticed the change. I don't know if I rubbed it wrong it the middle of the night, or what. I suppose it is possible because I was in so much pain, that when I finally crashed, I was having one of those "someone is stabbing me in the eye" dreams. I just can't wait until the end of the week when I get out of here & can finally take a week off! The visual and mental stress of exams and final papers, etc, certainly isn't helping anything.

Anyone else up all night? I have a suspicious feeling that tonight is not going to be so much fun either. I hate to whine & complain, but thanks for letting me vent to you all! I know that everyone here at least understands! No one else seems to. I don't want sympathy, I don't ask anything of anyone, I just need to vent and to know that someone is out there listening! I really should learn NOT to try to talk to certain people about this stuff. It always ends up making me more frustrated and upset.

hugs,
Skeye

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 5/5/2009 2:45 PM (GMT -7)   
Skeye,
First of all

((((((((((((((((((SKEYE)))))))))))))))))

I am listening! I am so, so sorry to hear of your increasing pain. Sure, the stress could be doing it. This is final's week, I think I read you say somewhere. I'm guessing your straining that eye more than usual. But is there anyone (M.D. wise) you could have take a look at it? The color change is a concern to me - maybe you did rub it, but maybe it was just hurting and that's why you had the stabbing dream.

I definitely would at least call your doctor and let him know, and see if you can get an increase in the fentanyl or use it every 48 hrs., or some other option.

I may not be online all night, but I generally don't get to bed until the middle of the night, at best, so I'll try to check in.

But I will be thinking of you and sending you hugs and a shoulder to lean on!

PaLady
p.s. Vent all you want!!! It is not "complaining"! Not on this site!

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 5/5/2009 3:18 PM (GMT -7)   
Skeye, I agree with PAlady in that you should call your doctor asap...

((((((((((((Skeye)))))))))))))))))))))))))))
plenty of hugz to give no matter if you want them, I'm sending them, along with
a shoulder to cry on................
Keep on venting it's okay..
p.s. try cold or heat packs to see if they help and go to the ER if
it gets worse...
((((((((((((((((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 5/5/2009 6:00 PM (GMT -7)   
Thanks PA & Chart! I really appreciate the support and hugs! I don't know what I'd do without you guys! Everyone here really is like family!

The eye looks a little better tonight than it did this morning. I'll talk with my father later tonight & see what he says. He's really the only one I can talk to about this, but I usually have to wait until about midnight to do so (but that's no problem since I am always wide awake). I'm due to check in with my pcp tomorrow & will see him later in the week, and we will no doubt be increasing the fentanyl then. We haven't yet reached the "equivalent dosage" of what I was taking previously, as we started out really low, hoping that I would have a much more significant reaction to the transdermal fentanyl. Apparently not, or at least not yet. I'm also due to speak with my ophthalmologist. I have been waiting for him to call me back for about a week now, so I think I'll give him another call tomorrow. It isn't anything urgent, he always calls back the same day if it is, but I'd really like to talk to him about several things.

Skeye

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 5/5/2009 6:10 PM (GMT -7)   
I guess I've just been having such a hard time the last few weeks. I hate making things about me. It makes me feel like I am constantly complaining to everyone, where in reality I just want to talk, vent, & not feel so alone through this! I really do love all you guys! No one else understands like you all do! You are all like family; my CP family! smilewinkgrin

Skeye

fatherjohn
Veteran Member


Date Joined Feb 2009
Total Posts : 999
   Posted 5/5/2009 9:23 PM (GMT -7)   
Skeye, I am sorry that it has been tough going. I understand the feeling of wanting to vent or even talk and are hesitant because you don't want to sound like a whiner. I have written many posts lately and deleated them. What makes it worse is some people don't seem to take you seriously or they shower you with sympathy. Just to have someone genuinely care. Don't get discouraged. As I read your post about your PM Dr starting you low and then increasing can be frustrating as you wait to have the meds increased but a conservative approach is understandable. Just keep pushing through. I pray you do well as you finish the week at school.

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 5/5/2009 10:58 PM (GMT -7)   
Skeye

You are not alone! We are all here for you! I do hope you are feeling better tonight! I feel the same way as you do about all the folks here, all of you have became my family!
Skeye you are also in my prayers!

White Beard
  I'm Retired USAF, went back to school and became an RN, and now am on full disalbility!--Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


edt
Veteran Member


Date Joined Dec 2008
Total Posts : 773
   Posted 5/6/2009 5:43 AM (GMT -7)   
Skeye,
I am so sorry you are having an even rougher time than usual!  You are our FAMILY and we will always be here to help you through.....this is our safe place where we can say how we feel and be understood!!  You are ALWAYS there for us with a word or hug, hope knowing we all care helps you feel a little better!
((((((((((((((((((((((((((((((((((Skeye)))))))))))))))))))))))))))))))))))))
XXOO
Patti

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 5/6/2009 2:56 PM (GMT -7)   
Fatherjohn, White Beard, & Patti thank you so much for all of your support & kind words! I really do appreciate it so much!

I feel a little better today in general because I am HOME! I had had it with my roommates and other things, so I packed up everything I wouldn't be needing when I return towards the end of the month, got in my car and drove home! It feels so good. I can't quite say that I am done yet, because I have one more paper due Friday via internet, but it is mostly finished. It just feels great to be home & out of that pressure cooker, and a royal greeting from the dogs sure helps too! My little boy must have been excited to see me & crying for 10 minutes - he thought I never was coming back (although it has only been a couple of days)!

Thank you for helping me & being there for me, my dear friends!

Skeye

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 5/6/2009 3:46 PM (GMT -7)   
Skeye,
I'm so glad you're at a place you can relax and get some doggie hugs and kisses. You're right, those sure do help!

Once that paper is done, you can breathe a big sigh of relief and play with your little boy!

Hugs!

PaLady

Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 5/6/2009 9:56 PM (GMT -7)   
Skye ...

I hear you, girl. I understand.

I'm in a lot of pain. I can't get comfortable in any position.

My pills aren't taking care of my pain.

My EYES don't focus. (This has been going on for some time. I try to pretend it's
not a problem)

I probably will not be here tonight. I can only sit for a little while. (That sounded
like a threat. IT WASN'T!!)

I feel like a complainer. No one wants to listen to me. No one wants to listen to
anyone who's in pain. That's why I try so dam n hard to not show pain when
I'm around my daughter or my doctor. Getting caught having pain is just ...
humiliating.

Somebody here posted a new way to get over our pain, Skye. She puts model
trains or planes together and gives them to needy folks. Maybe that would
help us. You think?

You Sweet, Skye.

I'm joking about the crafts project. We'll do that when were feeling better. Huh.

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 5/7/2009 5:14 PM (GMT -7)   
Thanks Pam! Not being able to focus your eyes makes things much harder (believe me I know TOO well!). I too try not to show anyone that I am in pain, including my doctors, which can be a problem in itself sometimes. My biggest fault is probably that I have a hard time "letting people in" & showing them my true emotions and feelings. It is really exhausting though, pretending you are not in pain, and everything is okay..

Skeye

Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 5/7/2009 5:25 PM (GMT -7)   
Oh I'm so glad to hear your home now w/ your little boy! His love is the best med you could posibly get! I'm happy you got some releif being away from the presure cooker too, that has just multiply the pain by nines! I just pray all the time that someone will find a cure for your problem and rid you of what has to be the worst pain of all> eyes, I just can't imagine what that must be like! I had a little peice of metal in my eye once and it about drove me crazy! I listen to you and others and it makes me feel so pethedic for being such a baby about my little small tiny problems! I only want you to feel better Little Sister! If there was anything I could do to make it better for you, I would in a heart beat! You don't deserve this. Why do the best people always seem to suffer the worst????????????????????????????????????????????????????????????????????????????????????
Hang in there Sis, better days are coming, I just know it!!!!!!
Big Big Gihugic HUGZ>>Your Big Bro,
Pete
56 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> new 2/6/09> 400mg injections once a month. 56 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 the aircraft carrier USS John Stennis in port in Singapor and the other on a Gator Freighter USS Bataan stationed in Norfolk, Va. to be deployed to the Middle East in early May. I am one very proud (what they call me)> Big Pops! 


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 5/7/2009 8:30 PM (GMT -7)   
Thanks! Pete! And stop being so hard on yourself! We all hate to talk about our own problems. I know I do. But, you are NOT being a baby, believe me. I really only have one big problem going on, but you have many! You just had major neck surgery, for goodness sake! And then all that damage you did to your body when you were younger... I can't imagine! So stop trying to play down your situation! You hurt just as bad, if not more than everyone here, and you deserve every bit of support and understanding that we can give you!

hugs,
Skeye

golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 5/7/2009 9:07 PM (GMT -7)   
Skeye, I'm so glad your pain is settling for you, the stress of all those end of semester deadlines would have been horrendous, I really hope you get to relax now with your family. Here hoping for some pain minimised days ahead! Best wishes, golitho

fatherjohn
Veteran Member


Date Joined Feb 2009
Total Posts : 999
   Posted 5/7/2009 10:10 PM (GMT -7)   
Skeye, I hope everything is going better now that you having a break. Not having to read or concentrate as much should help. I was thinking about you today as I was meeting with a student. I had to keep making myself concentrate and refocus as I looked at the student. I just could not keep looking as my mind was probably exhausted. I can't imagine how it must feel like when you want to read or concentrate and the eyes don't work right or the pain increases. As a teacher, I find that inspiring. Be blessed.

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 5/7/2009 10:50 PM (GMT -7)   
Yes, I think that being at home & in a less stressful environment for just a day has already been beneficial. I'm still up at 2 am with pain, still can't read much (I actually tried to read for fun a bit today, but had to abandon it shortly after starting), but I just feel somewhat more relaxed overall, which is definitely helpful on many levels! Deciding to take a week off before starting my summer research was definitely a good call! I really need this break! It's definitely quite a struggle to get through all my school work & reading when my eye doesn't cooperate! But I just do my best.
All I have left to do now is to submit my paper in the morning, and then maybe I can really relax! Hopefully my doc will increase my fentanyl patch tomorrow as well, so I'll have a better idea whether this is actually going to help me at all & will also have heard back from another PM that he has been conferring with.

Skeye

And thanks for the well wishes golitho & fatherjohn! Much appreciated!

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 5/8/2009 12:43 AM (GMT -7)   
Skeye,
I don't see you online but it sounds like you're not having as restful a night as you'd like, although I am glad to hear being home and with your"boy" is helping relax you. I'm glad you got your paper done and that load is off your shoulders, too.

I was thinking about you today. I saw that new device - called something like a Kendal (I know I have the name wrong) - like a computerized reader, but it's a new larger version. Is that the one you have? I wondered if it would convert text to audio for you. One of these days there will be a device to do what you need - at least I hope so. Hope you're getting some sleep as I write this!

PaLady

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 5/8/2009 6:21 PM (GMT -7)   
Hi Palady,

Yes, last night wasn't great. I slept about 3 hrs, which I suppose isn't all that abnormal for me, but it's still icky. Although this bad week has actually allowed my doc to see my eye nice & swollen and discolored today - doesn't it always seem that whenever we see the doc, it's on our good days? It certainly hasn't sunk in that the semester is over yet! As for the device, I think I know what you are talking about! It doesn't convert text to audio though sad, I think you can just download a bunch of books onto it & read them all on one screen. The device that I have is a Nokia phone (I forget which one, but the software only works with one type of phone) with KNFB Mobile Reader software. It allows me to use the phone's camera to take a picture of text, such as the page of a book, and then it uses optical character recognition to read me back the text (in a lovely synthetic voice, but it's not too bad), while displaying the text on the screen. It is great! The only thing that I dislike about it is that it is slow to download the picture & convert the text to audio, so I only use it as a "back-up," for when I can't read on my own, as it takes about twice as long to go through and download everything & then play it back. But it is useful, and I am glad that I got it! Thanks for thinking of me! I often think of others here, including you!

Skeye

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 5/8/2009 9:56 PM (GMT -7)   
Skeye,
I heard it mentioned again on the news somewhere tonight. Kendal. Kindal. Something like that. I bet TonyMcGuire knows! But it does convert to audio because they were talking about the "gliches" that still needed to be worked out in pronunciation - one of them being Obama. The machine mispronounced his name. But it looks to be the size of a book - not just a paperback but a textbook size. I'll bet you can find a picture of it on amazon or somewhere.

PaLady
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