It finally happened

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

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

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.

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.

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

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

Just for the record, Skeye, your words touched me, too!

PaLady