Analysis I’m tired of eye surgeries and subsequent recovery issues and time. Need prayers please. Thoughts, whatever.

Humperdoo

One eyed willy.
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Hello who dat friends. Just venting here for a moment.
Had my latest emergency surgeon visit today. This afternoon.
After tumors taken out of my head, degenerative eye disease and now multiple more cuts on my eyes I am worn out. Waaa. I know. I’d like to consider myself a very strong man, but I have found something that brings me to my knees and for the first time in my life I’ve conceded defeat.

Intracranial pressure. Thru all of my plethora of neck up issues over the years I’ve been very fortunate to not have met this foe until recently. I’ve tried so damn hard to be strong and beat this too, but I can’t. It’s like having your head in a vice and just keeps getting tighter and tighter. Started bleeding profusely out of my eye today and that did not bother me one bit, heck I was kept awake for a transplant back in the day where they used a little saw on my eyeball. No worries. Cupcake stuff like the Ohio State schedule.

Then the pressure. Called the wife, who obviously knows me, told her I loved her and to please pray for me, this pain is so strong it renders me unable to speak (and people in my life know I love to speak). I am already on 13 meds due to this and don’t know how much more I can take, literally and figuratively. It’s so severe I live in fear even when it’s not hitting, waiting for the moment it will hit again. For any who believe in such, please lift a prayer for me as I’m losing this fight. I’m worn down.
Attached is a picture of my meds most of which correlate to this eye stuff. I’m big, I’m strong, and I’ve found not only my equal but my superior. I know this is a sad post, just please I’m asking for prayers. Need some reprieve.
 

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Humperdoo

Humperdoo

One eyed willy.
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k, structural question
how much practical vision do you have atm?
having read your eye surgery stories and your description of your vision, i've always pictured you about 1.5 inches away from the screen
then today when you brought up the reading/library stuff again, I was thinking "maybe Dolphin Lover should listen to books on tapes to help relax"
then i thought that maybe you do all of your computer stuff voice-activated

so is it this

View attachment 104255

or this

View attachment 104256

Lol.
Good and appropriate Q’s Guido.
I am still the first guy. And I’m even closer. I’m black blind in the left eye and al it does is bleed and hurt. I’ve tried to get them to remove it, to no avail. I’m on 8 percent and borrowed time in the right transplant. Thankful for what it has given me. All of my bosses have gotten me multiple super size monitors to try and accommodate me over the years, thankful. And I actually have come to enjoy the playful ribbing I get, like “Just get glasses boy.” When I was younger, struck with this particular affliction at 18 I used to take offense as it frustrated me. I’ve taken great pride in not ever letting it stop me. And it never has, until these last six months. It’s never before now caused me to miss work.

On the library, and books, I am just so old school. I’m trying to switch into podcasts but am having a hard time. I like the feel and smell of a real book. Weird I know.
After my initial transplants my wife read Wheel of Time to me as I was so enthralled I couldn’t wait until healed to read. As a funny aside, during her reading she said a word (I won’t say here out of embarrassment lol) that I thought she pronounced incorrectly. She was delighted (in a good and playful way, that I was wrong as I’m considered the word wizard) to be able to poke fun at me. In all fairness she was and is smarter than me though, so I’m ok with that L. 😊

Sorry for the meandering ramble, still enjoying this temporary pain reprieve.
And while I think about it: The surgeon is doing the best he can. My diseased corneas are so worn down from the disease. And the left one (hurting one) he said is literally like old tissue paper now and just disintegrating. No one’s fault and is what it is. Thankful for all the years I did get to see thanks to the donors (RIP and TY) so many smiles and laughs and seeing the beautiful faces of my little ones was and is priceless and will never be taken from me. Blessed and thankful.
 
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Humperdoo

Humperdoo

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It's ok to feel defeated from time-to-time. I know from personal experience that chronic pain can be debilitating, and leaving us feeling like we can't handle it anymore. But even in those lows, there is strength. We're human. To paraphrase that cheesy-assed Chumbawumba song, we get knocked down, but we get up again. Posting about your experience is it's form of therapy. And then there is prayer, which I firmly believe in. I will pray for you.
TY gboudx.
I too believe in the power of prayer as I have a personal belief and relationship. And the power of positive thought and positive karma. Do good be good.

I hope that whatever ails you gives you amazing moments of relief as well. And that you grab those moments by the horns so to speak. I’ve learned to be so appreciative for ‘normal’ pain days. So thankful. Ironically after a lifelong battle with a plethora of health issues I am only now seeing what it means when people say “If you don’t have health you don’t have anything.”

This has also fascinated me as it’s made me change my philosophy on a core belief. Which I love seeing things thru another lens. As I so often allude to I know.
My wife and I both are staunchly against suicide as we believe it’s a permanent solution to a temporary problem. However, I have and am learning that I perhaps was too narrow in my focus. When someone is in excruciating pain, and there is no ‘end’ in sight (pun intended) I now can sort of empathize with that plight.

And I stress, I am not a suicidal person, and not wanting to become one. I’d like to beat this. And return to some semblance of normalcy. I’m trying to hold the line.

In case I lose this fight I told my wife what I’d like played at my celebration of life ceremony. Very unlike me. That did not make her happy lol. She knows I’m not an attention grabber though so it alarmed her. Lol.
 

gboudx

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Yes I have come to understand how someone could get into a suicidal state of mind. Very fortunately for me, my condition is controlled with meds, to the point that I don't experience so much as discomfort. I have a joint disease called Ankylosing Spondylitis. There's no cure, but the meds work for me. I'm lucky. I hope and pray you find something that helps you.
 
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Humperdoo

Humperdoo

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Yes I have come to understand how someone could get into a suicidal state of mind. Very fortunately for me, my condition is controlled with meds, to the point that I don't experience so much as discomfort. I have a joint disease called Ankylosing Spondylitis. There's no cure, but the meds work for me. I'm lucky. I hope and pray you find something that helps you.
I am ignorant of that condition but am about to educate myself. I’m so thankful (and I mean that) for your pain to be able to be managed. I’m hoping beyond hope that mine can be too. The Diamox and 4 pressure reducing pills did for a few months. Or that they will just take the eye out if that offers some relief.
Eta:
Only briefly perused that condition. Ouch man. I’m so happy for you it’s being managed! I’ll go back to it and learn more about it. (Just love to read)
My prayers are lifted for you as well, friend.
 
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Humperdoo

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I told you weeks ago to rub some dirt on it, but no one ever wants to listen to me.

You're a good egg. Hang in there, and I'll drop you a prayer.
Thanks Flip.
And back in my younger days plenty of other fellas rubbed plenty of dirt on it for me. 😁👀
 

crosswatt

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It's only when we suffer a defeat that we truly understand our strength. I'm sorry that you are going through this, and will be praying for you.

And I have a question; why in the world have they not removed the painful eye? What medical reason do they give you, especially if it would satiate the massive pain level you're in?
 
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Humperdoo

Humperdoo

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It's only when we suffer a defeat that we truly understand our strength. I'm sorry that you are going through this, and will be praying for you.

And I have a question; why in the world have they not removed the painful eye? What medical reason do they give you, especially if it would satiate the massive pain level you're in?
Thanks Watt.

Idk. It’s my speculation as the area that is causing the unbearable pain is in the eye itself. I guess they want to try and salvage this eye? I’m already completely blind in it, and that’s ok. If this pain can be managed I’ll find a way, with one eye or no eyes. Just can’t hold the line on this pain much longer. I’ll be asking again at my next surgeon visit. Wednesday. Unless have to go for an emergency again like yesterday. That was my fault though I shouldn’t have called my wife lol. I had no choice in the matter at that point. She knows I’m not an embellisher of pain and when I can’t speak real words in her mind it’s time to go. Good thing I guess. I was clocked at a 71 pressure, beating my previous high of 67. Yay. 😊

Bec (wife) got mad at me as the doc told me to be easy on all the meds he was giving as they could stop my heart. I’m worn down. I told him not to tease me with a good time. Lol. I almost lost my other eye during that exchange. As my wife often tells me,
“Joshua, God gave you the right to remain silent but he just didn’t give you the ability.” Think that’s why she freaks out so much when this spikes and leaves me an unable to speak invalid.
 

SystemShock

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I can't say I feel your pain, but I understand it. My wife is on a similar boat... perhaps the same large brain watercraft . You got her beat by 4 pill bottles, though.

I am THE resident heathen of the forum ( yeah, yeah, Heathen Saint has the name, but I am the one who stirs the heathen pot in here ) so I don't do prayers, and thoughts are just that, thoughts... which makes me pretty much useless to you in this situation. :hihi:

I'll tell you though, if I had a blood tear come out of my eye, I'd panic and run in circles flailing my arms and screaming like a little girl, but bleed profusely? I'd pass out and fall unconscious on the floor, relieving myself in my pants as I drop to the ground, and not be just like "oh, blood out of my eye... huh... That's some cojones on you, my friend.

On a serious note, you know your fight better than anyone, but from where I stand, looks to me you got what it takes to go the distance.
 
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Humperdoo

Humperdoo

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I can't say I feel your pain, but I understand it. My wife is on a similar boat... perhaps the same large brain watercraft . You got her beat by 4 pill bottles, though.

I am THE resident heathen of the forum ( yeah, yeah, Heathen Saint has the name, but I am the one who stirs the heathen pot in here ) so I don't do prayers, and thoughts are just that, thoughts... which makes me pretty much useless to you in this situation. :hihi:

I'll tell you though, if I had a blood tear come out of my eye, I'd panic and run in circles flailing my arms and screaming like a little girl, but bleed profusely? I'd pass out and fall unconscious on the floor, relieving myself in my pants as I drop to the ground, and not be just like "oh, blood out of my eye... huh... That's some cojones on you, my friend.

On a serious note, you know your fight better than anyone, but from where I stand, looks to me you got what it takes to go the distance.

Thanks Shock. And my well wishes for your wife. As a ‘vet’ of tumors and eye probs....I wish I had a nickel every time I tell any stories about my eyes...the awake for a saw taking my eye out story seems to get the funniest reactions. lol. The bleeding profusely from my eye, which I was doing as I calmly called my wife and tried to get thru a sentence yesterday to tell her I love her as that vice was at a 71, and she says the blood was just rolling onto the phone....got her to arrive at the door in 10 minutes. Quite a feat from where she works lol. I’m down with all of that and can hold the line, I just am losing to the pressure. I encourage anyone that’s bored to look up normal eye pressure. Then think about a 71. It’s a literal vice. My last ER doc called me stupid to my face for fighting that for 4 days....well I’m stubborn. And prideful. Or at least I was. Lol. I’ve always been told there is bigger badder and tougher out there and I’ve met a few while younger and full of piss and vinegar.....this opponent makes Roberto Duran and Julio Cesar Chavez look like they couldn’t punch. I’ve never been hit this hard. Never. It’s got me on the brink of saying No Mas in my corner. Tip of the cap to cranial pressure.

Thanks again Shock. Your post made me literally laugh out loud and I need that right now.
 
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Sorry to hear about what you're going through. Your strength and positivity are inspiring.

So what is the medical name of your condition? Is it just "degenerative eye disease"? Is that like macular degeneration?

Is the pain all from your eyes? If you did have your eyes removed would that eliminate the pain? You've had transplants before, is there a possibility that new transplants would solve the problem, or is that not an option? What's the best and worst that could happen going forward?

If you're often reading your computer monitor inches from the screen, I'd think that would not be good for your eyes, eh?
 

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