Are there any men out there with Lupus who would like to share their relationship experiences, knowledge, helpful advice? I am the girlfriend of a man with Lupus and I want to support him as much as I can.
Well what ya wana know?
When I was diagnosed my wife and I were dating and planning on getting married someday. When we started going out I was a healthy guy, but not long afterwards things started to go wrong and after a few years led to my Lupus diagnosis (once it went after my Kidneys!). My wife stuck with me through it all, even tho we were only dating at the time and I know of at least one dude that tried to lure her away ("he's probably gonna die anyway").
How bad has your BF got it? Lupus has definitly changed me in many ways. I've had to learn to live with this disease and that means a change in lifestyle. I'm not as active as I once was and I've come to know what I need, when I need it. You need to learn what you need with this disease, how to live with it.
I know at times I can be a bit of a beast. This disease can really cause some pain and that'll make anybody kinda irritable. Some of the common meds can also cause some moodiness (Prednisone....ugh!). My wife has realized this and gives me space when I need it, and hug when I need that!
Learn what you can about Lupus. Support, understanding, patience, love, all stuff that can come in handy when ya love a Lupie, male or female!
Hi Eric. Thanks for your response. It's pretty bad, SLE with organ involvement and, of course, horrible pain. I've already done a ton of research and reading on the subject and, until something new comes up, I think I know everything I can. I keep checking for new info and new books though. It's difficult. I feel him drawing away and I don't know what to do. I want to be here for him but he seems torn. On the one hand he wants me in his life but on the other it seems from his words and actions that he'd prefer it if I wasn't here. Did you ever feel that way towards your now-wife? I would stick by him through anything but I don't want to be one more worry on his mind when he already has so much to deal with.
You said it went after your kidneys. Was it advanced or did they catch it early enough? Do you have SLE? How bad has it gotten? Have you had periods where it seemed never-ending, constant and continual pain and fatigue? Have you had periods of respite or remisson from some or all of your symptoms?
Thanks again. I don't mean to be nosy, I'm just wanting so desperately to figure this out and, hopefully, be there for him.
Don't know if your still looking at this thread....I just found it again! Know I had a little dejavu going on with your other thread but, well, I got Lupus and I'm a little foggy at times!
Nephritis with me was about as bad as it can get. Hard to describe everything that was going on, and it's been MANY years since. Part of my problem was that the first time I hadn't been diagnosed yet. I didn't get a diagnosis until my Kidneys were well involved. Some troubles at the time....lotsa joint pain/swelling , fatigue. To tell you the truth I just don't remember everthing that was going on. Thanks to the Nephritis I had VERY high blood press (readings in the 230/170 range at times!), retaining water badly. Was on so many meds I can't come close to remembering all of them (pills before meals, with meals, 3 times a day, four times a day......it was a full time job just to try to keep track of it all!). Was on a 2gm of salt a day diet due to the BP, so there was very little I could eat...and what I could eat was pretty much tastless. Felt horrible and really went to bed at night wondering if I'd wake up in the morning. I was very heavy, but it was due to the water retention.....couldn't wear shoes, all the water went to my feet (good old gravity!).
Was sent to a Rumy that I still see and LOVE, he's just great. First time I saw him he let me know how serious this was. Did a Kidney biopsey which only confirmed the already obvious. He said he wanted to start chemo ASAP. At this point I was will to do ANYTHING, so really looked forward to the chemo more than I was in fear of it. Rumy told me to not expect much for the first few treatments. A "normal" chemo treatment schedule (with Cytoxan) was once a month for 6 months and once every three months after that...for a total of 12 treatments. I responded to chemo amazingly well. About two weeks after my first treatment I started to pee again...and boy did I pee! Couldn't sleep at night, always had to go! My Kidneys had got back to work and were busy getting the water out of me. I lost around 40lbs in a week...all water...it felt GREAT! After 10 treatments my Rumy talked with other in his office and saw no reason to continue, I was done!
I had some VERY good years after that. Got in shape and hiked Half Dome in Yosemite (17miles, 5000' feet up, then down). So it's possible to get your life back. Nephritis did return about two years ago and although my Nephrologist said the infection the second time was worse than my first, I never felt as bad the second time. I had four chemo treatments and am once agian feeling pretty good. I walk about 2-3 miles a day and have a nutty goal to do the Dome again. Got a long way to go to get in shape for that, but I like having goals, gives me something to reach for.
Feel free to PM my if you have any questions for me. I sometimes forget about threads...like this one. May not be around this weekend......I tend to pop in at work more often than at home (shhhh!).
Wow. That seems to be very similar to what we think is going on with him right now. He'll see the rhumy in a couple of weeks--I'm more anxious for that time to hurry up and get here than he seems to be--and I just keep hoping that things will start to get better. I really appreciate your letting me know what you dealt with and are dealing with. So, before you started seeing your rhumetologist were you able to exercise or were you in too much pain and just too fatigued to do much of anything like that?
Thank you again! I don't like this rollercoaster, but it's a bit easier to deal with when the ups are more--or at least equal--to the downs
I was in MUCH too horrible a condition to excercise, I could barely walk. I didn't have to wait to see my Rumy, he was in the same buliding as my GP, and when he saw my tests he wanted to see me ASAP. I dumped the GP, after all those years of him treating me like a Hypochondriac I just could no longer stand the guy. The Rumy I LOVE, great Doc.. When other Docs./nurses ask me who my Rumy is they always answer how lucky I am to have him. Sometimes the guy even calls me to see how I'm doing!
Hope things get better for ya. Bummer you gotta wait to see a Rumy. Waiting sucks. Once I knew the problem I was very egar to get the treament underway.....I wasn't getting any better doing nothing.
Enjoy the weekend......I'm leaving work now.....YAY!!!