View Full Version : Question for the men with lupus?
09-26-2006, 05:53 PM
How do you motivate a guy to go to the doctor? My oldest brother has discoid lupus, but the last couple of days he's had symptoms that sound like pericarditis so I think he may be evolving to systemic lupus like me, but he says he can just "tough it out" like a bad cold. I've tried to convince him it doesn't work that way, but it's so far not working. I've already lost one brother to cancer because he didn't go see a doctor until his cancer was too advanced to be treatable, so I'm worried about my oldest brother and at the same time furious that he's being so stubborn. Sorry guys, I just don't get the macho thing. So short of drugging his coffee and physically dragging him, which isn't very practical since he's about a foot taller and 100 lbs. heavier, how do I convince him?
09-26-2006, 08:52 PM
Obviously I'm not a guy - but I do suffer from pericarditis. I have had episodes of acute pericarditis and have been in ICU for a week on numerous occasions. Pericarditis is nothing to take lightly. Having personally experienced that kind of pain - it actually feels like a heart attack. When my labs came back, my CRP was 7.5......and I received a very stern lecture from my cardiologist. And now - I immediately call whenever I start having the chest pains - THIS IS SERIOUS STUFF...IT CAN KILL YOU ! I have read that the leading cause of death for lupus patients is heart related. Below is a paragraph from that particular article.
"Pericarditis, is an inflammation of the tissue surrounding the heart that causes pressure or pain in the chest. Occurs in about 30% of patients. Inflammation of the heart muscle itself (myocarditis), although uncommon, can lead to irregular heartbeats or even heart failure."
I don't know that it's actually a "guy" thing, I believe we all tend to think "it'll be alright tomorrow"....but unfortunately tomorrow doesn't come for some who wait. I wish you the best - I know you want to make him go - but after you have tried all you can - it is ultimately up to him, and when we all get scared "enough" - we do what instinctually is the right thing.
You'll be in my thoughts and please keep us posted. I really hope that he does go to the doctor.
09-27-2006, 09:36 AM
I just want to piggyback on what Browneyedgirl has said. Also, you might want to force-feed him information about Pericarditis and Lupus. He might get angry with you..so be it!! Like Browneyed said, any indications of heart or lung invovlment should not be ignored!! He must be made to understand how serious this could be if it is indeed his heart.
I have even been known to call my family member's doctor's office to advise them of the symptoms my family member was having and to tell them that the family member refuses to come to see them. The doctor's staff will not disclose any information to you, but they will take the information that you provide. In my case, they sent my family member a letter with a scheduled appointment and addressed the issue with my family member at that appointment and it turned out that the issue was serious and needed immediate medical attention!!
I know it is a bit underhanded, but it worked for me!!
Peace and Blessings
09-27-2006, 10:13 AM
Part of the problem is that he is a veteran and doesn't have health insurance, so he gets all of his medical care from a VA clinic, where he sees a different doctor every time, and there is absolutely no continuity of care. He has not even seen a rheumatologist because VA will not agree to pay for him to see a local doctor, and the closest VA hospital with a rheumatologist is in St. Louis, Missouri, over five hours away. I have tried to get him into my rheumie, but without insurance or a VA treatment waiver, it's impossible to even get an appointment. I get absolutely furious with the veterans medical care system - it would be so much cheaper and faster to grant waivers to pay for local doctors instead of forcing people to drive out of state for tests and treatments. Last year he had to go all the way to Louisville (3 hours drive) for a simple bone density test which could have been done 20 miles away in our area hospital. My brother is law is a diabetic, also a veteran, he has to drive to Marion, Illinois to get his insulin and meds.
Sorry, didn't mean to get so far off topic here - we have a lot of veterans and active-duty military in my family - anyway, that's why the medical care is such an issue.
10-06-2006, 04:44 AM
YOU HIT IT RIGHT ON THE HEAD...the reason he won't go is because though we risked ourlives for this country the VA care is GARBAGE and this country and GIVERNMENT should be ashamed of itslef the way it treats those who were willing enough to chance losingther life for this country.
The VA hospitals are all dirty and filled with these interns who donot care and just want to do ther time and get out.
The one I used to go to was SO DIRTy that my wife would come up and get a hotel room aat the HOLIDAY ONN and I would sneak out and go shower and clane up as the bathrooms were overflowing with stuffedup toilets and nasty mold and I saw cleaner hospitals while in NAMN in coutnry than the ones that we are supposed to be teated like HERO"S at.
It is a very sad state of affairs.
Sadly also is your brother will not go to the docs until he's ready so the best thing is to let him deal with what he must and in the meantime you can contact some teaching hospitals and they MUST take in so many indigenous people each year and would think he qualifies and with LUPUS he also qualifies for DISABILITY and MIGHT be able to also get money from the VA....make some calls to the bearest VA ADMIN near you and see what you can do for him.
A call to your SENATOR or STATE REP's office is a great red tape expeditor...especially now during an election time.
Also call 1-800-medicare and see if they can help you and try Social Security for some kind of monetary help he is ENTITLED TO IT!!!!!
Let me know if ya ned some help and I'll look into it or even call your brother if you wouldlike....maybe hearing it from another BROTHER IN ARMS may change his mind.....we vets have a conection to each other that goes beyond other connections. MAYBE he will listen to one of his own.
I would tell him that HE owes it to those who did not make t back to live his life tot he FULLEST POSSIBLE among some other stuff only men talk about.
LET ME KNOW IF I CAN HELP firstname.lastname@example.org
10-06-2006, 07:23 AM
I may need to take you up on it.
I am constantly frustrated by the VA and its minions, especially now when we are seeing more wounded and severely disabled soldiers than ever - how in the world are we going to take care of them when the VA can't even care for the veterans of previous wars. Just going to the VA hospital in Marion is enough to break your heart - I go with my sister sometimes when she drives her husband, and we talk to the kids there - and they are KIDS for the most part - such young faces and such very old eyes. Even though the advances in front-line casualty care are amazing, and soldiers are surviving injuries that would have probably been fatal in earlier wars, you have to wonder what quality of life they are going to have. But our Congress is actually cutting funds for research into rehabilitation for traumatic brain injury and prosthetics research even though we have more TBIs and multiple-amputees than ever because of IEDs, while still talking about how they support the troops! It is a shame and disgrace to our whole country.
10-06-2006, 07:43 AM
8) JUST LET ME KNOW.
I WAS IN NAMN for 13 months and had to go for PTSD treatment.....
I do have PRFESSIONAL COUNSELOR EXPERIENCE and being a VET he will listen to me before others......us VETS have an unwritten bond !!!!
11-29-2006, 08:33 PM
Ya the VA hospitals do suck- when I went to the VA hospital they told me that I was "A-OK" even though I was preg and bleeding for 2 weeks straight, they said the fetus was fine, pumped me full of morphine and told me not to come back to the ER but to get a family practioner- 5 days later I went to a regular hosptital (w/ no health insurance) I ended up spending 2 weeks in ICU, after being told that I was carrying a dead fetus for 2 weeks, I had to have over 7 blood transfusions, platelet injections, 2 surgerys, potassium IV's, ultrasounds, all type of scans- etc- anyways, to my point...if medicare wont cover it and the VA refuses to cover it, he can always go to the county- thats what I did, the county will help if he cant afford it, and if they wont and he really wants to see someone- have him see a doc and pay cash, most of them will do payment plans, i know it'll get expensive, but at least he'll get good info. my rhuemi doesnt charge me for my visits or the 2 weeks in the hospital, said thats the most he could do for someone who had the courage to join the military! You never know maybe he'll get a doc who feels strongly about people in the military :)
03-10-2007, 09:24 PM
as you probably guessed i am male and i have had a major change to my lifestyle when diagnosed with lupus, now i can't speak for all males but we tend to avoid doctors, yeah. but in my case this is serious the way i see it is i am now 31 and my lupus is no where as severe as a lot of people on this site but i know in years to come it may go that way.i have 3 children youngest 3 oldest 9 now i want to see my kids grow up, i had a realality check when reading in to this lupus and i want to see my kids grow up not die young so my goal is to get healthy and bet this ( as best i can) males need to be less pigheaded in cases like this cause overall you are playing with your life.
i was a person who was outdoors everyday all weekend no shirt brown as you konow where i getting at now i can venture outdoors have a life more off indoors and there is nothing i can do about it.
so over all i am babling shit arent i but your bother needs to have a reality check and realise his out come 1:does he want tyo die young?
2:live healthier go to dotor and see his life out? run that past him to give him something to think about.
sorry if i over did it but he has to realise no matter what that he has two option one is reasonable the other i a no goer.
thank for your help so far hopr this helps you abit
"just tell him to wake up and smell the gum leaves"