It finally happened

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skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 2/18/2009 3:54 PM (GMT -7)   
My ophth finally returned my call today, and I wish I didn't answer the phone. He is completely out of ideas. He's no longer sure as to the cause of my pain & he said that I have exhausted every option that he can think of. He has been fighting with me, for me, for the last two years & we've finally reached the end of the rope. I knew that this was coming soon, but I expected that there would be at least one or two more things to try. I'm just devastated.

I suppose he's not giving up, as he will be presenting my case a difficult cases symposium at a national meeting this spring to try to get some more ideas/suggestions, but there is just nothing that he can do anymore. I wish I had more faith about the outcome of the meeting, but I know that he has already consulted with a bunch of people other than the ton of docs that I have seen myself & no one has any answers. I just feel so numb. I need to be able to hold on to that tiny piece of hope, because that is what keeps me going, but I think I've lost it. I need to be able to have something to look forward to, some hope of relief, but there is nothing left, and I don't know that I'll find anyone that will be able to offer me something. I just don't know what to do. And of course, he had to tell me all this on my birthday.

Skeye

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 2/18/2009 4:58 PM (GMT -7)   
Oh, Skeye,
I hurt for you, with you. And on your birthday, no less. Like an extra punch to the gut. I wish I could be there just to give you a hug, to let you cry on my shoulder. Because it sounds like you just need to do that right now. I'm feeilng a little of that myself - that maybe I just need to fall back, curl up on the bed or something along those lines, and just not try to fight....yet.

But you know and I know neither of us can totally give up. But we can call it a day for now. Do you feel like just focusing on your birthday - maybe with a friend or two - and forgetting as much as possible about what the doctor told you. Play Scarlett O'Hara - and think about it tomorrow.

What is great is that your case will be presented to some great minds. And with your love of science ane learning, I can't help but wonder if you won't find someone else just as curious about your case. But in the meantime, what do you do while you wait, right? And how do we all accept the things we cannot change. Tough stuff, I do know. Life does present such tough teaching moments to us.

Let me know how I can help. I'm here. I'm listening. So are others.

Hugs - big ones,

PaLady

fatherjohn
Veteran Member


Date Joined Feb 2009
Total Posts : 999
   Posted 2/18/2009 5:09 PM (GMT -7)   
SKeye, I to am sorry that this kind of news comes on a day that you really want to celebrate some positive things. I was thinking last night about a subject along the lines of how we maintain or find the hope to get through another day. As a pastor, I have a verse of scripture that helps me, "forgetting what lies behind, I press on..." At times thats what I have to do. Not focusing on the pain last night, forget if even for awhile the  issue with doctors and look forwards. If we look forward with the weight of the past, there seems to be no hope. I will keep you in my prayers and know that people care.

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 2/18/2009 7:51 PM (GMT -7)   
Palady & fatherjohn -- thank you so much for the support! I really need it today. I'm a little better after having gone out to dinner with my family, but now that I am alone & thinking too much again, that horrible sinking feeling is coming back with a vengeance. This all just hit me so hard. I don't know how to accept this. I still don't always know how to accept my CP in the first place. I'm sure I'll find some way to keep going, but I'm just not sure about anything right now. I have really lost so much faith in medicine & the medical system through all this. I don't know how I'm going to wait another two plus months before I hear anything else. I'll keep doing research on my own, but if that was easy, I wouldn't be in the situation.

Skeye

kttn251977
Veteran Member


Date Joined Jul 2007
Total Posts : 554
   Posted 2/18/2009 7:56 PM (GMT -7)   
Skeye, sorry you are having such a tough time..... Is this an ophthalmologist you are talking about? Is there anything we can do? I'll keep you in my prayers..... -Shan
RX's: Oxycontin 80mg 2x's daily; Oxycodone 30mg 5xs daily; Zanaflex 4mg 3x's daily; Restoril 15mg 1x; Soma 3x's daily; Lyrica 100mg 3x's daily (pain & fibro.); Phenergan 25mg (as needed); Amitriptyline 25mg 1x (chronic pain); Cymbalta 60mg 2x's daily (pain from fibro); Abilify 5mgs at bedtime (depression); Metoclopram (as needed) & Senokot (as needed).
"The most critical choice you'll ever make is the one you make about what you're going to do with this. The past is over. The future hasn't happened yet. The only time is now."
- Dr. Phil


mom9mom
Regular Member


Date Joined Sep 2008
Total Posts : 489
   Posted 2/18/2009 8:14 PM (GMT -7)   
Skeye all I can say is that I am sorry that you have not been able to get the releif and help that you have been looking for.
Lost half of my small intestineJan.2008.Ilieostomy for 5 months then reverst in June 2008,Nerve damage to right leg,part of my right hip bone removed Jan. 2008,Cronic pain,hernia,infection in my back called discites,and depression.Gallbladder removed Nov,2008.Surgery to fuse L3 and L4 vertabra Dec. 31,2008.Mother to 9 kids 7 boys 2 girls and 1 stepson.4 grandsons,9 grandaughters.4 of my grandkids I inherited from my twin sister who passed away 6 1/2 years ago from a blood clot after surgery.God has given me my life back after I almost lost it.Even though its a painful and sometimes hard road to walk I take it one step at a time and give thanks to god for every step I take.


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 2/18/2009 9:10 PM (GMT -7)   
Skeye,
I am so glad you went out to dinner with your family. And I am so glad you were born! Maybe it's hard to think about the words "Happy Birthday" because I tend to cringe at that anymore. But I do wish you a peaceful heart, even though it may be elusive at the moment.

It is difficult to learn that medicine can't give us all the answers, all the treatments we want and need. Difficult to accept our limitations and theirs, and still struggle to find a way to go on. One thing: you aren't alone tonight. I know we're not there in person, but we are all people with our fingers touching the keys and our hearts and minds thinking of you as we do so. If I didn't have the connections to the people on this forum some days I don't know how I'd get through.

Acceptance I think is a daily thing. Sometimes an hourly thing. I don't think it's a place we get to, and put behind us, at least not when we're still strugging with the problem. If our CP was cured, we could heal easier and go on with our lives. But we have to find a way to heal our hearts and spirits even with physical pain and lives that are short of what we want. I speak of my own struggle as much as anyone else's.

Just know you're not alone.

PaLady

fatherjohn
Veteran Member


Date Joined Feb 2009
Total Posts : 999
   Posted 2/18/2009 9:36 PM (GMT -7)   
I too am glad that you were able to go out and have the presence of your family during dinner. Cp takes so much of our energy and attention that it is hard not to find our identity in it. When it becomes our identity and there is no relief or even assurance that we have more avenues to pursue to find the relief, our whole identy and everything in our life takes a big hit and it is difficult to recover. SKeye, the very fact that you continue to speak into others life shows you have tremendous meaning and purpose in life. One of the things I teach my students is that unmet expectations equals conflict. We all have various degrees of conflict going on at any given time. It is not the fact that we are in conflict that is important, but how we handle the conflict. We all expect our doctors to do something to help us and when we don't find that help we expect, we are let with that empty feeling. Keep fighting and face the conflict. Who knows when that victory will come. But we won't experience any victory without staying in the battle. Continued blessings.

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 2/18/2009 9:43 PM (GMT -7)   
fatherjohn - I really think you've raised an insightful and useful insight regarding our identities. Maybe when we have more energy we could start a new thread around the lines of acceptance, identity...oh, light things like that!

PaLady
Might help if I wasn't tripping over my own words. rolleyes shakehead

Post Edited (PAlady) : 2/19/2009 12:18:21 AM (GMT-7)


Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2283
   Posted 2/18/2009 10:17 PM (GMT -7)   
Skeye,
Happy Birthday! Glad you at least had some joy on your special day.
Try to keep hoping that they will find something. You were considering maybe going to another part of the country to see a specialist. Is that still an option? I just have run across too many people (maybe a dozen or so) who have had really hard diagnoses to make & after years of searching they got their answer. I just have to believe that the same thing will come true for you. I know it hurts to be disappointed when something doesn't work out as planned, but the only way you have a chance of finding the answer is to keep expecting that someone will be able to find the underlying issue & to keep working faithfully toward seeking that out.

You have been so strong thus far -- don't give up now! :)

hugs & prayers,
frances

Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 2/18/2009 11:10 PM (GMT -7)   
I am so sorry. This stinks.

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 2/18/2009 11:49 PM (GMT -7)   
Thanks so much everyone for all your support & comments and birthday wishes! It is so wonderful to be able to come here, where everyone understands & offers such wonderful support. You guys have really become like a family to me.

Shannon, yes, it is my ophthalmologist, I don't know what happened, I must have gotten distracted while I was typing, as it looks like I only wrote part of the word - oops! Out of all my docs, he knows me the best. I've been seeing him (way too often) for over 20 years, even before my injury a couple years ago. I wish there was something you could do to help, but unfortunately there isn't anything anyone can do other than just being there for me. I am so thankful for your support & prayers, it really means the world to me!

Palady, your post really touched my heart! I can thank you enough for all the support, advice, and of course hugs you've given me over the past few months. Coming to HW as a relative newcomer to CP, you & others have taught me so much & have really helped me to navigate the world of CP. You are the mother hen of the board! :-) I really don't think I would be functioning as well as I am today without all your help!

fatherjohn, I'm so glad you joined us on HW, already you have added so much to our wonderful family! Your words are so true. It is so very hard to maintain one's identity when suffering from CP. Our pain controls so many aspects of our lives that it is hard not to lose one's self in it. Often times, throughout this process I have felt as if I was and am defined by my eye. At times I feel as if I don't know myself anymore. I have given up so much of what I loved, and my life revolves so around my eye. It is hard to find yourself & keep from becoming lost.

Frances, I don't think that that option is really on the table anymore. Because for the second time now, I did not respond to massive doses of steroids, it is somewhat more unlikely that inflammation is the culprit afterall. The doctor that I was thinking of seeing in Iowa is a neuro-ophthalmologist that sub-specializes in orbital inflammatory conditions, but because my doc is no longer going with the inflammation theory & neither I, nor my parents really have the money to fly me out there & back (not to mention that the doc will almost certainly be out of network for our insurance), I think I'm going to hold off. For now, I'll keep trying to do research & I'll keep looking for someone closer to the region in which I live, but honestly, I'm not even sure what to look for anymore either. I don't even have a theory as to the cause of my severe retro-bulbar pain, optic nerve inflammation, and other eye symptoms, so I don't know what type of expert I'm looking for. I sure hope that I'm one of those people who finally gets an answer, but right now, I'm not so sure. Everyone is stumped.

Skeye

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 2/19/2009 12:17 AM (GMT -7)   
AWe, Skeye.........
I read your post and wanted to cry with you...bad news is just that and this Doctor could've waited one
more day to give it to you than on your Birthday, here take my shoulder and lean on me, we'll get you
through this together as we are your family too, don't give up hope, sometimes it's all you got so just keep
a piece of it yet, maybe when your done with College, you'll be lucky to get a job in Iowa so you can see
that specialist, keep that option open, okay.(I'm trying to read and type without my glassess so forgive
teh errors)...I had to quit seeing an optomogist as she wanted to do a fourth eye surgery and well, I'd
rather have the back procedure that insurance won't cover which has a better outcome for me but since
insurance won't pay it's a moot point..Anyways keep the hope that a doctor is out there and that someday
you'll be able to see him/her and your eye will be better...I sure wish I could take your pain away,
soft hugz and prayers for now.........
**********************************************
* 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 *********

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


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 2/19/2009 12:20 AM (GMT -7)   
Just for the record, Skeye, your words touched me, too! yeah

PaLady
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