Steroids and Round Tuits...

lowatter

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UPDATE: After another 10 months of doctor visits and jumping through hoops you would not believe I finally have an important diagnosis to share with you guys. I wasn't going to continue this thread until I had some solid answers. I really appreciate your thoughts and prayers.
My lovely wife Julia and I just got back yesterday from MUSC(Medical University of SC). This was are 3rd visit there and it's 3 1/2 hours from us so it's a real hassle but they're the best. I was diagnosed with a rare disease called Dermatomyositis. It is an auto-immune connective tissue disease that is kind of a cousin of Lupus. There's only 1,300 adults in the US that have it and it's incurable. Basically, my body is fighting itself attacking my muscle, skin and joint tissues.
I'm still on steroids but they prescribed another drug that they give to organ donor patients so that the organ is not rejected by the body and they're going to try to wean me off the Prednisone steroid. I'm starting to take Hydroxychloroquine along with the Mycophenolot and vitamins.
I've been out of work for a year now and we're really struggling. We went through our life's savings and I was recently denied disability benefits but they closed the case before important tests and final diagnosis was recorded. The denial comes at no surprise as most 1st time claimants are denied. I'm talking to a lawyer this afternoon for what should be done next. My condition is one that qualifies me for disability.
My quality of life is somewhat manageable and I can still play some guitar but not for very long as I tire easily. I do plan to post some guitar related things here when I can but our lives are so chaotic.
ANYWAYS, just an update for those that wondered. Thanks and best wishes and health-Dan
 
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LtDave32

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Very best wishes in all of this, Dan. Keep us up to date on How you are doing, my friend.
 

SlingBlader

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Hang in there man. Keep fighting the fight. You’re doing the right thing by retaining a lawyer. A good lawyer in the field can absolutely make a night and day difference in getting things worked out with the beurocracy.
 

nuance97

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Best of luck with getting disability…we had to go through that with my mom who also has a super rare 1 in a million diagnosis. Hope you are able to manage your symptoms and be as active & productive as possible
 

lowatter

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Thanks so much guys. We talked with the lawyer's representative and I think they will take the case. We have a 10AM Monday appt and they really seem to be right on it and want to file a reconsideration ASAP. I think that they will see that it's a winnable case but there's a ton of particulars they need and my wife and I have our work cut out for us over the weekend.
I swear that my care over the last year or so is in the 100's of thousands of dollars. Thank God for the VA. They've treated us right but with the Covid and all the hoops we have to jump through with the VA/Dr's/testing etc...it's been a NIGHTMARE.
My lovely wife Julia and I will be married 20 years on the 25th and she's the light of my life. We are very strong together and always will be. She's 11 years younger than me so I have to stay healthy for her for many years to come. I turn 61 next month.
 
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ARandall

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It would be nice if insurance companies weren't so inherently against providing the very benefits they claim to insure you for.
We have an ombudsman service which is a great incentive for companies to honestly assess claims. A complaint upheld there is financially bad for the provider.
 

Skyjerk

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Where to begin...

I've been hanging here for 11 years now and it's one of my favorite daily stops on the internet highway. This section of MLP has been a great source of information/entertainment for me and many of us have become friends and shared a lot of adventures along the way. I'd like to share a new direction and journey that I'm embarking on. I hope that this thread is acceptable here for the luthiers section and there will be some building/repairing/setups/shop sharing etc. I hope our great moderator Lt. Dave doesn't find this thread irreverant or inopropriate.

I turned 60 last month and from doing manual labor all my life(I do maintenance/remodeling/plumbing/electrical/HVAC etc) my body is REALLY falling apart. I've had 2 cervical neck fusion surgeries and need another very soon, 2 rotator cuff shoulder surgeries and need another soon, my prostate is the size of a large egg and everything that goes with that, I have a groin hernia...and then 5 months ago, fertilizer hit the fan. I suddenly had incapacitating pain throughout my body that took me out of work completely and on the road of dealing with the VA/Dr's/hospitals etc trying to get to the bottom of what's going on with me. Some form of cancer or advanced rheumatoid arthritis are the possible suspects.

PLEASE NOTE THAT THIS IS NOT A PITY SEEKING THREAD! This is about what is what I'm doing with my time off from work while my lovely wife and I are waiting on test results, seeing doctors etc that will determine our future. There's a chance that I may be on permanent disability.

The steroid Prednisone was prescribed to me and it was like a miracle to me because it took away all my inflammation causing most of my pain and made me functional again after being in severe pain for 2 months. I lost 20 pounds in 3 weeks though I have no appetite loss. I went from 180#s to 160#s and I can't gain any weight back.

I named this thread "Steroids and Round Tuits" because the steroids give me incredible focus and energy to takle light projects around the house and the fact that I'm not working 8-5, I have time get stuff done that I thought I'd never get to...IE: Round Tuits. If my wife and I were not so possitive I would use the phrase "bucket list". I can't be on steroids forever so I'm going to make the best of it while I can.

I have a single car garage that I turned into a woodshop/whatever shop many years ago that was looking like someone threw a grenade into it. I spent many hours over the last 2 weeks cleaning it out and making it project tackling capable again. Though it's a pretty sadly appointed shop compared to most, I really enjoy being out there and doing projects. I have a large list of items(many guitar/amp related) and I hope that you folks will share over the next few months or so. I'll update any medical changes as I go of course.

I'm making a list of several things I need to do to 2 guitars I scratch-built and I'm planning(hopefully) of taking on a Tele build as well as my 1st real LP scratch build. I'm also planning on making a few 5E3 pine cabinets etc. I'll post pics etc as I go.

Anywhos...wanna take a ride?
I feel you man. 2020 was a shit year. I had laser prostate surgery in July after 2 years of up 5-6 times a night. My dignity will never rcover from that whole odyssey. in August I suffered a massive tear of the supraspinatus tendon, labrum, and biceps tendon which basically stopped all my activities or all types. I need my right arm it seems. Got all those repaired in December and have had to rehab it myself because I couldn’t afford the physical therapy. I am actually doing OK with it. I got some detailed instructions and I’m religious about doing it and now 5 months out from that surgery I have nearly 100% range of motion and Im lifting again regularly. It’s gonna be another 5-6 months getting my strength back. I can finally work in my shop after a forced 7 month hiatus.

2021 was worse though. I lost my other son. The suck level can’t be measured.

I don’t say that stuff to compare pain and suffering, but to illustrate what you have learned. life wears you the hell down. It’s relentless. It just keeps at you and just when you think you’re coming out the other side of something, it hits you even harder.

our only defense against despair is in deciding to not be wrecked by it and to just keep pushing ahead as best we can.
sounds to me like you’re doing exactly that, so bravo brother. keep it up.

You’re doing OK :)
 

lowatter

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Thanks Chris. I shared your life's tragedies with my wife recently and we're both pulling for you and yours. There are no words. I have a great respect for you and your strength and your incredible talents Chris. You are an inspiration to this little corner of the internet that I like to frequent. Thank you for your contributions here.
Yes, we will carry on and prevail. It won't be until we have a secured monthly income when I can breathe a little. Time will tell.
 

moreles

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I was recently denied disability benefits but they closed the case before important tests and final diagnosis was recorded. The denial comes at no surprise as most 1st time claimants are denied.
I'm glad you have this perspective because this is exacly what my experience has been -- the automatic "no" is intended to make as many people as possible give up and go away. It's immoral. I hope you get approvfal on appeal; that's what has happened for me; it's as though it's standard operating procedure. Sometimes you have to file a grievance with the medical group, or even with the state, just to get companies to honor their commitments. It's like a game to them -- where they cheat and cheat until someone finally tells them to effing stop cheating. It sounds like you've got some grounds for optimism. Keep us posted, and here's wishing you well.
 


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