Devon Sinsley said:
Sean said:
Our thought and prayers are with you Devon …
Hmmm the term "Bite me " is now more respected!
Thanks for the Laugh Sean. She is like a second wife. We have our moments, but I will always love her.
Oy vey! I’m sure your first wife doesn’t want to know that. (https://largescalecentral.com/externals/tinymce/plugins/emoticons/img/smiley-cool.gif)
Devon, I’ve been occupied with other things lately so I haven’t been as active here as I would like and I’m just now reading the updates. So sorry to hear about all of this. I have an inkling of what you’re going through because I am going through it, too. I was diagnosed with Parkinson’s almost three years ago. I have a visibly-extended belly due to a large abdominal hernia that can’t be fixed until I lose more weight, and, to top it off, suffered a detached retina back in February that after three surgeries, still needs a fourth one to get my vision somewhat back to normal (scheduled for the end of January). I was fired because I had Parkinson’s, filed a lawsuit, and got a settlement that was, of course, not nearly enough, and now I find myself retired at a younger age that I had anticipated but with aspirations for other things that are now largely out of reach for a one-eyed Parkie on meds who walks like a drunken sailor even without the meds.
Am I surrounded by friends and family? Yes. Am I lonely? You bet! My therapist advised that during those times when I want to curl up and hide from the rest of the world I was to force myself not to. She told me to go play with trains and to hang out with other people playing with trains. You’re right. People with non-obviously-visible disabilities are somewhat invisible to everyone else – even to those who know you have those non-obviously-visible disabilities. I find that I am treated much differently by people when I use my cane.
So, a couple of suggestions, my friend:
Take your depression and loneliness seriously and treat it as the medical condition that it is;
Go play with trains and other people who play with trains;
Know that you are not alone; and
Wear your aluminum foil hat in public. People will treat you differently.
Hang in there …
Greg
Greg,
Thanks it’s always nice to know when people really understand. How can one be lonely when they are not alone. Hard concept to grasp. As for the depression I am taking it very serious. I take a low dose antidepressant and lots of D3 to help.manage it. I am also seeking a counselor. The depression is the hardest part of this.
You are also very right in that because I walk talk and act “normal” and function “normal” people think everything is fine. When they see a scar and 22 staples in your head you get a different reaction. Steve posted a thing on Facebook that is so true. I am not faking being sick, I am faking being well. Most of the time, unless you are close to me, I dont let you know how miserable I am.
Ohhh does that invisible illness, invisible disability, thing touch a whole bunch of stuff in my life, and several relatives lives, and a whole bunch of people I’ve encountered over the decades.
It ain’t just the fabled millennials who are superficial shallow idiots, it is truly equal opportunity across the demographic spectrum.
““Fortunately”” my 2 aunts with multiple sclerosis now have it advanced enough where it is kinda in your face obvious, so their days of having to deal with the presumptuous judgemental fools are now over.
Devon Sinsley said:
Greg,
Thanks it’s always nice to know when people really understand. How can one be lonely when they are not alone. Hard concept to grasp. As for the depression I am taking it very serious. I take a low dose antidepressant and lots of D3 to help.manage it. I am also seeking a counselor. The depression is the hardest part of this.
You are also very right in that because I walk talk and act “normal” and function “normal” people think everything is fine. When they see a scar and 22 staples in your head you get a different reaction. Steve posted a thing on Facebook that is so true. I am not faking being sick, I am faking being well. Most of the time, unless you are close to me, I dont let you know how miserable I am.
Oh man, I wish you didn’t know this… faking being well, from need.
I do it too, with an added urgency, down here they advocate culling the herd!(https://www.largescalecentral.com/externals/tinymce/plugins/emoticons/img/smiley-yell.gif)
Go easy (a caring suggestion follows) on the alcohol, it’s more for celebrating the good times, than lifting you out of the poor ones.(https://www.largescalecentral.com/externals/tinymce/plugins/emoticons/img/smiley-wink.gif)
My teenager passed his 200k smog test today, me, the optimist bought 2 years worth of tags!(https://www.largescalecentral.com/externals/tinymce/plugins/emoticons/img/smiley-laughing.gif)
Be Blessed, you are not alone. Woof!
Pretending to be well. It sucks, but it’s true.
Jerry Kramer, University of Idaho standout, and pulling guard for Vince Lombardi’s Packers was finally inducted into the NFL Hall of Fame, last year. He’s been confined to a wheelchair for the last several years, but found the strength to walk to the podium to get his jacket, and then make a short speech.
Those that pretend to be well don’t want to admit frailty, and cling to the hope that this is only temporary. The pain and fatigue rob them of the ability to be civil, and it is often simpler to retreat into one’s self, rather than engage. When out in society, they come across as gruff and unpleasant. They certainly don’t want to be that way, so it becomes easier to retreat.
edit: a misplaced anecdote
Steve Featherkile said:
Those that pretend to be well don’t want to admit frailty, and cling to the hope that this is only temporary. The pain and fatigue rob them of the ability to be civil, and it is often simpler to retreat into one’s self, rather than engage. When out in society, they come across as gruff and unpleasant. They certainly don’t want to be that way, so it becomes easier to retreat.
Ahhh you hit the bullseye my friend as you keenly and often do. My wife and son have learned when the pain is talking. I have been very crabby and short. I apologize a lot. My son even gave me a hug the other day after i went off about nothing and said “its okay dad, its the headache talking”. It really is a serious issue, a self imposed prison. My wife has get together with family and I retreat to the bedroom. I haven’t been to a train club meeting because I can’t/don’t handle the commotion. And as you said its just easier to retreat than try and explain whats wrong. And for those that already know you don’t want to be a “whiner”. Its ugly.
John Passaro said:
Sunday a few weeks ago I was depressed and lonely. I bought a $10 cigar and got in my car and drove around, which sometimes helps, but not this time and I was even more depressed and lonely. I saw a young guy on a corner with a sign about being stranded. What the heck. I told him to get in and he said he hadn’t eaten in two days, was just trying to get back home. I believed him. In the drive-through window I bought him eight hamburgers, pop, and a bunch of french fries. Down at the Greyhound station I got him a ticket for the next bus to Oxford, Mississippi, which turns out was leaving in like three minutes. Standing at the ticket window he kept trying to thank me, but I told him to hurry up catch that bus…I was the one who should be thanking him. I drove home and ran some trains, not as depressed and not anywhere near as lonely, more like grateful this young fella was kind enough to let me do something for someone else with no chance of a return, which helped me.
So that’s my two cents worth. I’m not sick so I can’t even say “hang in there” with any conviction because I have no idea what it’s like, but depression? loneliness? now we’re talking!
This is a real sore subject with me (not your fault). I was very active in ministry at my church and at a local men’s shelter before this dang thing came about. I had to give it up, becasue it was and extra curricular activity, and I only have so much to give. It gave me great satisfaction and fulfillment to be able to do the Lord’s work helping guys in need. But I could not be reliable and really felt as if I was letting people down and stepped away.
My bad. I know how much you worked for your Divinity degree, know how much your ministry meant to you, and the great path you were on at the men’s shelter. It was actually your example that made me think to tell about my really inconsequential experience a few weeks back. You have your hands full. I wouldn’t dare hand out some sanctimonious suggestion about what you should be doing.
John no apologies necessary. I took no offense. It does feel.good to reach out in help of others. Its supposed to give you the satisfaction you felt. I have often said my selflessness is for purely selfish reasons. Not glory and honor, but just the good feeling of being a decent human being. And for those of us inclined for serving God.
I knew what you meant. And I took it as you intended I believe. And I will hopefully get back to it. It’s just part of my imprisonment. But even Paul found opportunity to witness his faith while in shackles. So to have I. And in some ways this is an answer to prayer. One of my perceived short falls in that type of ministry was lack of relatability. I had never suffered as they had, therefore my talk of faith in the midst of suffering was anecdotal. Now I have a relatable testimony even if it is left unspoken, I can relate to the feelings of suffering.
So o take no offense. I am happy you took the time to serve. You may never know the impact you made, but you did make one.
Devon, I too understand being alone and lonely in a crowd. As for hiding one’s illness, I have been there too, but not to the degree that you are/have been. Hang in there buddy. You are a welcomed friend here, and we are all wishing you well.
Devon,
I’m sorry to hear your current treatment is not giving the results we all wish and pray for you. Hang in there. God usually opens another door for us when the first one closes. As you know, I too went through some serious medical issues earlier this year. The stem cell transplant I had back in April seemed to work at first. I even made it to Train Ops in Mass this summer. But by September the cancer was back with a vengeance, even worse than before. They now have me on a new program which uses a combination of strong chemo drugs along with a targeted immunotherapy drug. And so many other pain pills, inhalers, and cremes that I could never keep them straight without Mary to guide me and get me to all of my appointments. I even had her take me to the St. Louis Area Narrow Gauge meet and to Andy’s and Jane’s BS Ops Meet in October.
I would love to be working on the layout but I just don’t have the energy right now. But I do try to go to the local club meetings and open houses and definitely follow the adventures of everyone here on the forums. I do try to get to the workbench a couple of times a week when I have a bit if energy or am not to doped-up to see straight. It helps … even if I don’t get much done.
If I could offer just one tiny bit of advice it would be this: wean yourself off of the anti-depressants as quickly as you can. Of all the different drugs they gave me, these had the most negative impacts on my mind, my ability to think clearly, and my general attitude about life.
And always remember … your friends here at LSC have you in our thoughts and prayers continuously.
Bob
Bob Hyman said:
Devon,
I’m sorry to hear your current treatment is not giving the results we all wish and pray for you. Hang in there. God usually opens another door for us when the first one closes. As you know, I too went through some serious medical issues earlier this year. The stem cell transplant I had back in April seemed to work at first. I even made it to Train Ops in Mass this summer. But by September the cancer was back with a vengeance, even worse than before. They now have me on a new program which uses a combination of strong chemo drugs along with a targeted immunotherapy drug. And so many other pain pills, inhalers, and cremes that I could never keep them straight without Mary to guide me and get me to all of my appointments. I even had her take me to the St. Louis Area Narrow Gauge meet and to Andy’s and Jane’s BS Ops Meet in October.
I would love to be working on the layout but I just don’t have the energy right now. But I do try to go to the local club meetings and open houses and definitely follow the adventures of everyone here on the forums. I do try to get to the workbench a couple of times a week when I have a bit if energy or am not to doped-up to see straight. It helps … even if I don’t get much done.
If I could offer just one tiny bit of advice it would be this: wean yourself off of the anti-depressants as quickly as you can. Of all the different drugs they gave me, these had the most negative impacts on my mind, my ability to think clearly, and my general attitude about life.
And always remember … your friends here at LSC have you in our thoughts and prayers continuously.
Bob
Sorry to hear about your woes, Bob. As bad as mine seem, they are nothing compared to the health issues you, John C, and many others are facing. They seem down right petty, actually. I pray you find resolution to yours, Cancer treatments are hell. I have watched several close family members go through that. As for weaning off the anti-depressants I had to chuckle becasue thats exactly what I want to do. I hate taking meds and I seem to be taking a lot of them lately. So I discussed it with my old family doc and then my new family doc and they both looked at me like I was alien. My old doc, who is just as real as it gets with me, said “are you stupid, you want to stop taking them now” I chuckled. Please understand we have a long standing relationship and he is allowed to talk that way to me because I talk to him that way. He agrees I need to get off of them, he only put me on them temporarily anyway to deal with this mess, but he says with all that has gone on this is not the right time to even be discussing it. He has me on about the lowest dose you can take.
“Are you stupid?”
Well, you are a Marine, so there’s that. (https://largescalecentral.com/externals/tinymce/plugins/emoticons/img/smiley-wink.gif)
To have a good doctor you have a close and open working relationship with is a treasure.
Unfortunately I had to switch docs. He is semi retired now and only works three days a week and I need one who works Fridays. I have taken to much time off and need to see them on my days off. My new doc I think is gonna be great and does work in the same office.
That’s good, Devon. Speaking of doctors, later today I have appointment at our farm burg’s rural health clinic. With a Doctor I’m happy to work with.
Am also pleased with the Nurse Practitioner and the Nurses. The gals at physical therapy are great to work with and their place has a pleasant atmosphere, actually.
Honey, I’m home! With referrals to rheumatologist, neurologist, dietitian.
Devon Sinsley said:
Unfortunately I had to switch docs. He is semi retired now and only works three days a week and I need one who works Fridays. I have taken to much time off and need to see them on my days off. My new doc I think is gonna be great and does work in the same office.
That’s bullshit!! I remember very well as a young boy going out on house calls with my dad. He died last July, but I still have his black bag with his stethoscope and all in it.
On the other hand, I could be wrong…you may need more than what’s in the black bag!
