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Re: Does pain scare you? [Re: seymour] #281637
10/04/18 01:15 PM
10/04/18 01:15 PM
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MichaelSean Online
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Originally Posted by seymour
Originally Posted by seymour


As far as fusion goes I guess you're right. What scares me is my neck. I lost about 30% on one side and 50% on the other side even though I don't have fusion yet. I don't want to end up with a fully fused neck that will make me look stiff and make people ask annoying questions.



Anybody like me? Seems like I'm the only one who freaks out about the neck so much. I think I may be exaggerating.


You're not the only one. AS affects everyone differently. My lower back is just fine. Tip top. It's my neck that's a mess. And when it's your neck that's affected, that leads to things like tinnitus and head pressure, which are far and away THE worst aspects of my condition. I can deal with all the rest of it. But the pressure and the constant ringing ... that will a person mad.

Last edited by MichaelSean; 10/04/18 01:16 PM.
Re: Does pain scare you? [Re: seymour] #281640
10/04/18 04:27 PM
10/04/18 04:27 PM
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Originally Posted by seymour
When you have pain, or when your pain gets worse, does it scare you?


I will have a go at that question. At first I wasn't going to respond because I prefer to avoid that topic. Then my first thought was more cavalier and thought --NO! it doesn't scare me. Then I got more humble and had to confess, YES, certain episodes of pain do terrify me. I recall one episode when I was on literally clinging to the top of a door and thought if I let go I would die. I even envisioned my death certificate and it read "succumbed to pain". Now that I survived it - I like to tell the story and say it wasn't that bad. I hope it never happens again because I am not sure what I would do. Maybe just succumb and die but hopefully not.

Now for the boring philosophical stuff. My life is like a river. No I won't go there but I do like to ride the river. I like to see what is around the next bend. I don't worry about where the river leads - I just go. If I worried that around every bend in the river was something awful and was afraid then I certainly wouldn't enjoy that kind of ride. I just look forward to what is around the next bend - whatever it may be.

"Getting old ain't for sissies." --- I like that quote --- I think it applies to being young too.


Dx. reactive arthritis with recurrent uveitis, HLA-B27+ (1993), polymyalgia rheumatica (PMR) added in 2008, trigeminal neuralgia added in 2009

Hx. cataracts (2009), tendon rupture-wrist (2010), HTN with LVH (2011), pulmonary embolism-multiple, extensive and bilateral (2012), total bilateral knee replacements (2015), craniotomy for microvascular decompression of trigeminal nerve (2016), surgery pending for L4-L5 disc bulge, stenosis and severe "degenerative" spinal arthritis (2016)
Re: Does pain scare you? [Re: DadCue] #281641
10/04/18 05:27 PM
10/04/18 05:27 PM
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Originally Posted by DadCue
[quote=seymour]

Now for the boring philosophical stuff. My life is like a river. No I won't go there but I do like to ride the river. I like to see what is around the next bend. I don't worry about where the river leads - I just go. If I worried that around every bend in the river was something awful and was afraid then I certainly wouldn't enjoy that kind of ride. I just look forward to what is around the next bend - whatever it may be.


What you described is what I'm working toward.

My fear wasn't really caused by pain but by a lump I noticed under my left ear in May of last year. I had it CT scanned and the results were that it was not cancerous. Based on the results of the CT scan my primary care physician at the time told me that a biopsy wasn't necessary. But it's still there. It hasn't gotten any bigger but it hasn't gone away. For a while I celebrated. But my fear came back when another doctor, this year, told me that the only way to know FOR SURE was to have it biopsied. And I'm kicking myself for not having done that, even though I was following my doctor's advice. I play a what if game in my mind. WHAT IF I have lymphoma and I've let it go for more than a year because I didn't have that biopsy? That thought haunts me. What if the tech that looked at the CT scan made a mistake? Why didn't I go ahead with it and MAKE SURE?

But I am doing something about it now. I'm seeing a head and neck specialist. I had my first appointment with him on Monday. He's having me gather up the CT scan that was done of my sinuses and the one that was done of the lump on my neck. He's going to look at them himself and make a recommendation as to whether or not I need to have it biopsied. My hope is that by the end of October I have all this behind me. Because every time I feel weird ... if I can't sleep, or get a new pain, or feel fatigued ... I wonder if it's the cancer that I didn't catch last year spreading. If it were aggressive, sure, I'd know by now. Or be dead by now. But there are slow growing forms of Non-Hodgkins lymphoma.

My rheumatologist, based on my blood work, tells me not to worry about that at all. But I still do. Fear isn't always logical. But I look forward, by the end of this month I hope, to adopt your attitude and just live. See what's around the next corner. Be present. In the now. And stop worrying about what MIGHT be. Because living this way sucks. And it's exhausting. I don't like the man I am right now. I miss the man who rarely ever visited doctors and never thought anything bad was going to happen to him.

Last edited by MichaelSean; 10/04/18 06:13 PM.
Re: Does pain scare you? [Re: MichaelSean] #281645
10/04/18 08:03 PM
10/04/18 08:03 PM
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Originally Posted by MichaelSean
Because living this way sucks. And it's exhausting.


Maybe you are trying to go upstream too much. That's fine if you want some do-overs but it usually isn't worth it. Just go with the flow. I think getting that lump (lymph node I thought) removed would be good for you. Then you can move on and hopefully what is downstream will be more enjoyable.


Dx. reactive arthritis with recurrent uveitis, HLA-B27+ (1993), polymyalgia rheumatica (PMR) added in 2008, trigeminal neuralgia added in 2009

Hx. cataracts (2009), tendon rupture-wrist (2010), HTN with LVH (2011), pulmonary embolism-multiple, extensive and bilateral (2012), total bilateral knee replacements (2015), craniotomy for microvascular decompression of trigeminal nerve (2016), surgery pending for L4-L5 disc bulge, stenosis and severe "degenerative" spinal arthritis (2016)
Re: Does pain scare you? [Re: DadCue] #281646
10/04/18 08:14 PM
10/04/18 08:14 PM
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Originally Posted by DadCue
Originally Posted by MichaelSean
Because living this way sucks. And it's exhausting.


Maybe you are trying to go upstream too much. That's fine if you want some do-overs but it usually isn't worth it. Just go with the flow. I think getting that lump (lymph node I thought) removed would be good for you. Then you can move on an hopefully what is downstream will be more enjoyable.


I hear you. And you're 100% right. I have to get some certainty with regards to this swollen lymph node on my neck. Because it haunts me. And it's keeping me from being fully present for my life. I've wasted a year and a half worrying about this damn thing. I plan to get some closure on it by the end of the month.

Re: Does pain scare you? [Re: MichaelSean] #281647
10/04/18 08:40 PM
10/04/18 08:40 PM
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Originally Posted by MichaelSean
Originally Posted by seymour
Originally Posted by seymour


As far as fusion goes I guess you're right. What scares me is my neck. I lost about 30% on one side and 50% on the other side even though I don't have fusion yet. I don't want to end up with a fully fused neck that will make me look stiff and make people ask annoying questions.



Anybody like me? Seems like I'm the only one who freaks out about the neck so much. I think I may be exaggerating.


You're not the only one. AS affects everyone differently. My lower back is just fine. Tip top. It's my neck that's a mess. And when it's your neck that's affected, that leads to things like tinnitus and head pressure, which are far and away THE worst aspects of my condition. I can deal with all the rest of it. But the pressure and the constant ringing ... that will a person mad.


I mean I know I'm not the only one with neck problems, but I never saw anybody freak out as much as I do about possible neck fusion and what others might say if my neck is stiff and whatnot. It's strange that I'm so fixated on this.

Re: Does pain scare you? [Re: seymour] #281663
10/06/18 05:35 PM
10/06/18 05:35 PM
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Originally Posted by seymour
Originally Posted by MichaelSean
Originally Posted by seymour
Originally Posted by seymour


As far as fusion goes I guess you're right. What scares me is my neck. I lost about 30% on one side and 50% on the other side even though I don't have fusion yet. I don't want to end up with a fully fused neck that will make me look stiff and make people ask annoying questions.



Anybody like me? Seems like I'm the only one who freaks out about the neck so much. I think I may be exaggerating.


You're not the only one. AS affects everyone differently. My lower back is just fine. Tip top. It's my neck that's a mess. And when it's your neck that's affected, that leads to things like tinnitus and head pressure, which are far and away THE worst aspects of my condition. I can deal with all the rest of it. But the pressure and the constant ringing ... that will a person mad.


I mean I know I'm not the only one with neck problems, but I never saw anybody freak out as much as I do about possible neck fusion and what others might say if my neck is stiff and whatnot. It's strange that I'm so fixated on this.


Any other neck freak here? :P

Re: Does pain scare you? [Re: seymour] #281704
10/09/18 08:25 PM
10/09/18 08:25 PM
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Guys. I guess we're far away from a cure, eh?

I got used to the pain it seems, but it scares me. I sit here and notably if I wasn't in pain I would be enjoying my time sitting here, but the pain is really knowing that sitting here doing nothing is painful, and that is scary.

Re: Does pain scare you? [Re: seymour] #281734
10/10/18 07:07 PM
10/10/18 07:07 PM
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We may be far away from a cure but I think we're not THAT far away from a treatment that will halt disease progression.

Dr Reveille said himself that he believes we'll see a cure in his lifetime and he must be in his 60's. :P

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