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Home with illness |OT| A place to talk

GeekyDad

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Hey folks,

I've been with GAF for a while now, but I think this is my first attempt at an OT, so please bear with me. I guess a good place to start would be me telling you why I'm starting this thread...

A little over two years ago, I started having what I called back then "episodes." I won't bore you (right now, anyway) with too much detail, but suffice it to say I learned later on they were Focal Onset Aware Seizures of a sort. I went to my general doctor after I started having quite a few, telling him I suspected maybe having some type of anxiety disorder. He tried to work through it with me until finally around this time last year he referred me to a neurologist who ordered an MRI and found a tumor in the front left lobe of my brain. He referred me to a neurosurgeon...and it goes on from there.

I finally had to take my leave of absence from work back in September to begin my treatment (surgery wasn't an option due to the cancer's location).

I've been going nuts here at home, to be honest. I thought I had my last treatment about two weeks ago, and asked my doctor to sign a release to let me go back to work, but she wants one more MRI (will be my fourth now) before saying yes on the record.

Honestly, I don't know why I didn't try to create a thread like this earlier. I'm a pretty private person, I guess, but maybe there are other folks here dealing with similar issues, regardless of their illness and circumstances. Maybe no one else really needs a thread like this, and I have no advice, really, to offer; I can only maybe share my own experiences. But if you want (or more realistically need) a place to talk, cry or scream at the top of your lungs from a mountain top, please...do so.

Thanks

tldr: A place to talk about your illness. ;)
 

Phase

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Sep 25, 2019
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I'm a little surprised nobody has commented, but anyway. I've been dealing with chronic pain for years (severe to the point of not being able to walk some days) and am still trying to find a new job as my old job was a very physically active one. With my hobbies, not being able to play tennis and basketball, and skateboard for so long has hurt my mental health and kills me inside. Makes it hard to enjoy most things.

I feel for you though. I wish the best and hope you're able to return to your daily life as normal soon.
 
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GeekyDad

Member
Apr 6, 2009
7,187
1,497
1,250
My home
www.gamespot.com
I'm a little surprised nobody has commented, but anyway. I've been dealing with chronic pain for years (severe to the point of not being able to walk some days) and am still trying to find a new job as my old job was a very physically active one. With my hobbies, not being able to play tennis and basketball, and skateboard for so long has hurt my mental health and kills me inside. Makes it hard to enjoy most things.

I feel for you though. I wish the best and hope you're able to return to your daily life as normal soon.
Thank you. Yeah, actually, I finally got my release papers from my oncologist yesterday. I'll be going back to work on the 20th of this month. That being said, I got her to show us the latest MRI images, and the tumor looks, to me anyway, like it's grown. She says it has shrunk a little, and that the chemo may still be doing its thing. Hey, I ain't a doctor. At least I can go back to work. I'm with a union company, and thankfully I was able to draw a partial paycheck for six months. After that, they cut you off, so I really need to get back. My wife works two part-time jobs and has been taking care of me. But like you, though we need the money, I just so badly need to get out of the house every day. My work too is quite physical, but my boss has assured me he'll give me the time I need to get back up to speed. Running (jogging, really) has been a favorite activity for me, something I can do to clear my mind and physical activity that pushes me without pushing me to far. I miss it. Would be nice if I could do it again one day.

You said you've had chronic pain for years, but do you have any idea what is at the root of it? May I ask you approximate age?
 
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Phase

Member
Sep 25, 2019
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665
Thank you. Yeah, actually, I finally got my release papers from my oncologist yesterday. I'll be going back to work on the 20th of this month. That being said, I got her to show us the latest MRI images, and the tumor looks, to me anyway, like it's grown. She says it has shrunk a little, and that the chemo may still be doing its thing. Hey, I ain't a doctor. At least I can go back to work. I'm with a union company, and thankfully I was able to draw a partial paycheck for six months. After that, they cut you off, so I really need to get back. My wife works two part-time jobs and has been taking care of me. But like you, though we need the money, I just so badly need to get out of the house every day. My work too is quite physical, but my boss has assured me he'll give me the time I need to get back up to speed. Running (jogging, really) has been a favorite activity for me, something I can do to clear my mind and physical activity that pushes me without pushing me to far. I miss it. Would be nice if I could do it again one day.

You said you've had chronic pain for years, but do you have any idea what is at the root of it? May I ask you approximate age?
I hope your treatment works out. I have been in pain for about 10 years now, it progressively got worse. I'm 33, and used to teach tennis. For the last 4 years or so I've been struggling and trying different medications but I worry because the side effects (both short term and long term) aren't good and ruin my immune system. It could possibly be Ankylosing Spondylitis (AS), but the diagnosis is clearly a guess and I'm not convinced. The meds have only slightly worked there are a couple of other conditions that fit that still have to be thoroughly checked so I'm hoping it will shed some more light.
 

GeekyDad

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I hope your treatment works out. I have been in pain for about 10 years now, it progressively got worse. I'm 33, and used to teach tennis. For the last 4 years or so I've been struggling and trying different medications but I worry because the side effects (both short term and long term) aren't good and ruin my immune system. It could possibly be Ankylosing Spondylitis (AS), but the diagnosis is clearly a guess and I'm not convinced. The meds have only slightly worked there are a couple of other conditions that fit that still have to be thoroughly checked so I'm hoping it will shed some more light.
What has your doctor suggested as a possible diagnosis? Any referral(s) to a specialist?
 

Phase

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Sep 25, 2019
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What has your doctor suggested as a possible diagnosis? Any referral(s) to a specialist?
I've seen about 10 doctors over 10 years, some specialists some not. The only reason I've had an AS diagnosis is because I asked for a specific blood test that showed I have a specific antigen (but it's only tangentially related because many people have the antigen and don't have any disease; there's no causal link). The symptoms fit but they fit with about 8 other conditions as well. So I'll continue trying to figure it out.
 
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GeekyDad

Member
Apr 6, 2009
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I will say this, I've had many blessings, I feel, this past year or so. It many ways, it's been one of the best years of my life. Unfortunately, I also feel like I've entered a dark place that feels very familiar. I think perhaps most of it is due to simply being caged up like this. When I first took my leave, I couldn't get out of work any faster -- the seizures and fear was becoming terribly debilitating. But after the radiation portion of the treatment was over and I was given some time to recuperate before chemotherapy restarted, I started to become stagnant, bored, eating too much. I still eat very healthy food, but with the combination of steroids (required to keep me functional, as I was at a point of being unable to sit up or walk because of radiation treatment and chemotherapy), two seizure medicines that also cause weight gain, and the inability to get much physical activity, I went from 165 lbs. to 210 lbs. Add my disappointment with myself to the mix...yeah, just feeling really bad. Add also a lack of sleep due to the steroids and anxiety (regarding being out of work for so long, my kids, etc., etc.). For me, all of that usually becomes anger and frustration. I know the Lord is watching out for me, still, but I also feel dead-ass alone sometimes.

I set an alarm for Monday morning to call the psychotherapist who was referred to me while doing radiation therapy. My wife and I sat with her in the waiting room for a short time one day. She was quite nice. Figured maybe it could help seeking her council.