Man with Lupus Channel Intro | Systemic Lupus Erythematosus (SLE) 

Hi. Welcome. I’m glad you’re here. And wow, sounds like you have had a rough go with the lupus. I’m filing for disability because I keep getting sick or in horrendous pain, so often. It’s like I just cannot keep any semblance of a normal schedule. I’m throwing up multiple days/week. My brain fog is so bad I just can’t find words and I lose my place talking. My memory is just no good. I sure hope you feel well today and thank you for commenting and participating. It means a lot!

@@manwithlupus I wish you good wishes with SS. Make sure you app is filled out completely and have all your Drs explain and say you can not work. The more visits you have helps. I was denied the first time. I got a SS lawyer. Do yourself a favor and don’t even bother to fight them on you own. Also stay on your lawyers butt because they have to submit everything along with new medical results every 3 months. I think SS just denies everyone the first time. I hope yours goes through immediately. When I got to the point of not being able to work with all my specialists and results I couldn’t believe they denied me. You will love this , they denied me because I graduated high school and figured I could get another job! Oh that didn’t help the anxiety. It wasn’t even a medical reason. If denied I think(sorry brain fog) could appeal the decision. I did and still denied. That’s when I got a lawyer to fight them till it went to court. Not sure is others told you but a lot of times it takes 2 years to get a court date. Some states are easier and faster. Mine wasn’t. By the time I got to court it lasted about 15-20 minutes and I was approved. I forget how long it took to start getting paid. You will get the past money owed to you plus then your monthly checks will start. By then we had gone through our savings and racked up our credit cards to survive. We claimed bankruptcy which was the best thing we could have done. We continued to pay our mortgage and cars. Everything else was gone. No credit card bills and other things were gone. Yes we didn’t try for another one for 2 years. You need them at a lot of places because a bank credit card/debit is not accepted at a lot of places. They told us we would not get one for 7 years but we really watched our pennies. Paid all bills on time and we got a credit card to build credit in 2 years and a mortgage in 3.I always said I would never claim bankruptcy but life deals you crap and you do what you have to do. No one knows about it unless you tell them. You are in my thought and prayers that you SSDI goes through the first time. Hang in there and try not to let them stress you out. I will keep up with you. Take care.

Thanks for all of that info. Yeah I hired a lawyer right from the start. I know it’s a very long process. Right now we are selling everything, our house; my business that I can’t operate, my investment property and tons of our personal possessions. We’re just downsizing to get to a place where I can shift my home equity into investments that will provide passive income. I have financial planners who have gone over the whole plan and say it’s solid so that’s what we’re gonna do. If I get disability on top of that then I will be able to really live a decent life and try out the alternative medications and stuff like that. Right now I’m just racking up debt and my net worth is just tanking. I need to restructure my life so my family is at least secure and then from there I’ll either get disability or I’ll have to just spend the rest of my life scraping by, but at least I’m not going backwards and my needs will always be met. This is so scary and difficult.

This is one area of healthcare where it certainly feels like nobody really knows what the hell they’re doing.

@@manwithlupus I think issue is the mindset that it's considered a "woman's" disease and most doctors, even gout specialists (that I had to be several times), misdiagnose it and the person is billed, then on their way. Gout, arthritis and other joint related issues apparently fall under Lupus, but most doctors fail to do the more specific tests. At least that's my take since I've seen so many docs over the years. I had to specifically ask the RA to test me, based on a friends similar symptoms, yet she was more quickly diagnosed because she's female.

@@manwithlupus I am trying to figure out who the experts are -- I want to get treated by those doctors. As I commented above, I have RA and now lupus, too. RA is also a "woman's disease" (3:1 ratio), so not as extreme as lupus. But regardless of the statistics, if you got it, you got it. But with RA, it's like 1 in 200 people, but lupus is like 1 in 2000, so for men it must be closer to 1 in 20,000. But... when men get it, it can be very aggressive... If I have it, at least I want to get a correct diagnosis and then treat it proactively, including doing lifestyle changes.

Welcome to the channel. I’ve been very sick for a few months here but I’m hoping to get back to creating some new content.

@@manwithlupus I wish you healing and peace

Welcome! I just started it a few months back after finally receiving my diagnosis of Lupus. It’s been 20+ years of feeling sick and not right and nobody was able to help. We finally stumbled upon this diagnosis; also fibromyalgia, reynauds and working our way through my neurological issues. It’s all confusing. Glad you’re here. Let me know if you have any video topic ideas! At some point I’d like to start doing some livestreams so we can all interact in real time. I need to get the channel a little bigger first.

Same

Well thank you for all of that! I’m so glad your here. I can relate to so much of it. I won’t 30 years telling people I didn’t feel well and was not believed. I have a horrible trauma over it. I have a nagging feeling that everyone thinks I’m lying… because everyone did for 30 years. So I tend to wonder if I’m making things up. Or like “does that really hurt that bad?” It’s a torturous disease! And on top of that I have a genetic mutation that is causing complications with my Lupus and on its own is likely to cause bone marrow failure which I’m already showing a few signs of. I don’t know what to think or do. I feel my entire life has been ripped from my hands.

@@manwithlupus This is long…. I think Lupus is tougher than RA - based on what you’ve said and my own experiences. I imagine there are some people with lupus who have an easier time than some people with RA, but on the whole. Some comparisons: For me it was about a year or 18 months from when I started feeling symptoms to when I was finally able to get diagnosed with RA. I suppose like RA, people who eventually find out they have lupus might take a long time to get to the right doctor. In RA when joints hurt, you don’t usually think of going to a doctor who specializes in internal medicine. And orthopedists see everything through a mechanical lens, so they don’t do blood tests. “Your shoes are too small” “You’re using the air conditioning too much” - those were some of the things I was told about the causes of my joint pain. Like lupus, a young man is not the typical RA patient. Half a year ago, I’m sure I’d heard the word “lupus” and probably had seen pictures of the butterfly rash online or on posters in the waiting room at the rheumatologist’s office. But it wasn’t something that I ever thought about. But the feeling of my life being “stolen” from me due to RA is of course something that I always think about. Fortunately I have good medical coverage, but even so, biologics (the RA equivalents to Benlysta and Saphnelo) are insanely expensive. And the amount of *time* both at the doctor’s office and researching - and even just worrying about - the disease and its impact on my life. It’s like having a second job. Mentally, I feel like the best thing to do is “accept it.” When I first had RA I couldn’t stop thinking about how unfair it was that one in 400 men get RA - and usually not so young - and that one in 400 was me. WTF? But now with lupus it’s one in 20,000 for men by my estimate. WTF x 2! It’s completely natural to think about how unfair it is or what my life “should have been like.” On the other hand, if spending time thinking like that doesn’t actually get me anything in return, it also feels like thinking about it steals the time I do have, albeit time with a condition I’d rather not have. I think a more useful thing to say to myself is, “Now what?” Meaning, the situation is what it is, and rather than thinking about how it would have / could have / should have been, all you can do is play the cards you’re dealt. With my RA there were many years where I’d go to the doctor once every 3 months, check lab results, get a prescription and the doctor would say “see you in 3 months.” Even though I’ve lost time and money compared with someone who didn’t have RA, I feel things were close enough to normal that I didn’t feel such a great sense of loss. At those times the answer to “Now what?” Was “Live life pretty much normally, like anyone else.” I know that thinking about how it is so unfair is unproductive and unfruitful. But after more than 20 years with RA, I realize that for me anyway, it is impossible to completely eradicate those thoughts from my mind. It IS friggin’ unfair. But as much as possible, I try to redirect my thinking into “Now what?” And try to find out about how to improve my condition, or try to enjoy the time, even though I have pain or can’t do everything that I want to. I hope I can get to the “see the doctor every three months, live life pretty much normally” stage with lupus, too.There’s a lot of work to do before I get there though. That’s the dream, though. I don’t know enough about lupus in general or my own body’s version of lupus to know if that is realistic or not, but until I hit a dead end, I’m going to go for it. Finding a really good doctor is hard, and what’s at stake for the doctor is different from what’s at stake for us. I had to go through many RA doctors before I found one I could really trust, and then when I moved, I had to repeat the search again. I think of my RA (and now lupus) as a company. The doctor has specialized knowledge (and the ability to order tests and prescribe medicine) that I don’t have, just like the CEO of a company has expert management skills. But if the company succeeds or goes bankrupt, it is the shareholders who gain or lose. The patients are like the shareholders in this way. The CEO/doctor can get another job - find another patient, but for the patient, if treatment doesn’t go well, that’s your life. So as patients we need to rely on our doctors but at the end of the day, we’re the owners of the “company” and have ultimate responsibility. I’m sorry if I ended up sounding preachy. I don’t have all the answers, and I can’t completely get away from the mindset that this sucks and it’s unfair. But I am trying to find a solution to get to the “live life pretty much normally” stage. And while there are all kinds of roadblocks, when I catch myself caught up in an unproductive miserable train of thought, I try to ask myself, “What now?” And sometimes I can enjoy myself a bit more or make progress to understanding what to try next with my lupus. Ouch. Preachy.

I totally feel you! You’re in the right place. On top of my lupus I have Fibro as well. I also have reynauds. But I have an unknown going on as well. I have had a recent mri with a marrow signal issue in the base of my skull, the doctors are concerned because I’ve also had bone density issues in my pelvis and hips where I have a lot of pain. They’re doing cancer screenings now, trying to rule out blood cancers. I don’t have a lot of hope for disability, my only saving grace is that I found a doctor who is truly behind me. Subscribe to the channel and follow along and ask all the questions you’d like! Feel free to suggest video ideas as well. Truly hope you can find a good path to some solutions. I know how hard it is.

Awesome, welcome! I’m glad you’re here. I’m trying to just build a like minded community of people who can help support one another. I try to put out videos as much as I can, sometimes I’m just feeling too sick for weeks but sometime I can get them out weekly. My hope is for some great open dialog and helping each other get through this best we can.

Yep, same story here. I’m sorry man. Glad you figured it out though. It’s miserable not knowing.

Hope he’s doing OK! And you’re welcome. I’ve been finding enjoyment in building this community for sure! About to get another video shot this week.

@@manwithlupus unfortunately he has past away. This channel is helping me. It was 15 years ago . I find peace in knowing he is now with both our dogs Luke and buster. At the time of his death there were not any medications for his lupus. They were just beginning to develop meds back then.

I’m sorry to hear that. But I am glad you’re here and you were able to find some silver lining!

I did not know that. Please share more!

I have not. My lupus has always been a non typical presentation and I have some other issues going on that they can’t figure out. So for me it’s a bit confusing on what is Lupus and what is attributed to these other conditions. My kidney function is on the lower side but still in range so that’s good. But I have SO much pain it’s unbearable. It’s like most of the joints in my body just get locked up and stiff and it’s so painful to move at all. That could certainly be attributed to Lupus. My dsDNA has always been very high and just remains there. I don’t feel any better and I never have. I’ve continuously gotten worse. Over the last few years I have cycles where for part of the year, typically the cold part, I’m in excruciating pain and my reynauds just kills me. It all hurts so bad. And in the summer months I still have an extreme amount of pain, however it’s not as bad as the winter. But in the warm months I throw up constantly. I wake up nauseated every day and eventually that turns into throwing up daily for months. Again, the throwing up is usually in the summer. Then I have constant low grade fevers, headaches, horrible memory issues. I don’t know what to make of any of it. And nothing seems to really help. Even when my labs look better I feel the same. Someone is missing something.

Hello brother. When you look back 20-40 years eve prognosis was bleak. Like 5 years from diagnosis was the lifespan. So that has improved drastically. It’s getting much better these days where most of us can often live a normal(ish) lifestyle. For me, I so jiujitsu 5 days/week. Sometimes I miss and sit out. Sometimes I have to modify the sport. But I make it work. Life can be OK again dude. Hang in there subscribe so you know how to get ahold of me!

@@manwithlupus how about our lifespan per se?

I can’t imagine that it wouldn’t be affected. They say that with treatment it should be ok but man, I’m a year into treatment and I’m worse than ever. Makes me think they don’t exactly know what they’re saying or doing. How have you been feeling? I’ve been down with a bad flare for like 2 months. Just barely hanging in there. Some scary chest pain problems too. Almost landed in the hospital, closest I’ve been so far.

Absolutely, just email me at manwithlupus@gmail.com I don’t check that email daily but I’ll watch for an email. Message me here if you do email me so I get to it quicker.

@@manwithlupus Hi Ryan, Just recently discovered your channel and have also sent you an email. (^ᴗ^) Your videos are extremely helpful for men with SLE and their families / loved ones. -- APG .

Thank you!! Sorry for the delay on this. Been sick for a couple months with a bad flare. Just getting better and back to the channel! Hope to have some more content soon.