Lupus

[jbghostrat]

I'm not really sure. i think she had something done at the drs. to her leg right near her ankle and somehow she hit her leg on that place and it was on the artery and i guess she couldn't get it to stop bleeding. She wouldn't answer me when i called her name and the door was open so i just walked in and she was sitting in this chair she had in the bathroom and had about 5 towels around her leg and the whole bathroom was covered in blood.

 

[wossa]

Braves - Really Sorry To Hear About That

I don't know very much about the disease.

My sisters first husband died from it before heturned 30. He walked out on her well before that so I don't know what all his symptoms were.

There is a neighbor and church member who has lupus. About three years ago she was in real bad shape. She looked horrible and people were talking like she wasn't going to make it.

But today she looks great. Not sure if she's cured or just managing the disease. I wil check into her situation and let you know how/what she did to get so much better.

Best of luck to you, your wife and family.

 

[Honeygirl]

Braves...
I have Lupus disease - and I've had it for about ten years, give or take a few. Actually, I was relieved that the Doctors finally found out exactly what was causing my chronic fatigue, aching joints, and sensitivity to sunlight. In hindsight, I think I probably had it for years earlier, but didn't realise it.

To be honest, the first couple of years of this disease knocked me around something terrible. The psychological effects were perhaps more crippling than the actual disease. I was devastated that I had something that was potentially life threatening, and that it was a life long condition.

I guess over time, once I got used to having it - I basically took control of it - and thought - `I'm not going to let it ruin my life'. Since having that attitude, it's made a huge difference. In saying that though, I still have shitty days - and can't push myself to the extreme like I used to. When I need to rest - I need to rest. I'm getting better at that side of things - but it does take a bit of getting used to.

What is essential - is having understanding and tollerance. My moods were, well - wobbly to say the least, especially in the first year or so. I also suffered from depression - probably a combination of the meds and the of having a `disease' with such a stupid name!

Anyway - I've gone on too long with this post. Hope she is well and knows that you can lead a full life with lupus - it just takes a bit of adjusting, and being kind to yourself.

 

[mramailman]

Braves and Honeygirl, I am sorry that this disease has struck in your families and hope things get better for everyone.

I work with a great man at the Post Office that after being wounded in Vietnam, not once but twice, came home to find out his beautiful bride had this disease. Mrs. Erlease wasn't properly diagnosed for quite sometime but she initially had problems in 1976. One of Lupus' worst and debilitating effects is the achy joints as has already been mentioned. What that is, is a very slow process of destroying the joints. After a long period of time the joints will actually rot away, which is what happened to Mrs. Erlease.

She passed 2 months ago after 27yrs. of living with and fighting this disease. It was at it's worst a few weeks before she passed. Her shoulder had rotted away and after that she seemed to give up.

I think alot of James Webb. He is in my mind like I said before a great man. When my mom was sick and things didn't look good at all this man would cheer me up and would tell me to keep my head up..he really helped me during that time. The day after Mrs Erlease passed when I saw him the first thing he asked was "how's momma?"

Lupus is a slow moving disease and in Webb's words something you can't let control you. Live life and enjoy it.

 

[Braves]

Believe me Honeygirl, you did not go on long enough. It's actually comforting to read someone's else experience. I believe my wife has had symptoms for many years, starting with unexplained seizures. Physically, the hardest part for her is the pain in her knees. She has always been a very, very active woman, but on rainy days she can barely walk.

Mramailman..thanks, great story!

 

[Honeygirl]

Thanks Braves...I worried a little that I was ranting there for a bit!
My last severe lupus attack was last winter. My whole body ached - it was horrific. Nothing seemed to touch the pain. Once a year I also get a bad attack of arthritis in my foot - but I tend to get more ongoing problems in my hands - which is a real bugger.

I know that this is going to sound very lame, but the thing that devastated me the most, initially anyway, was the weight gain from the steroids. It's a horrible catch 22 situation - to work the weight off - you need to exercise - to exercise - you need to move without pain. Ironically, I was diagnosed with Lupus after losing a huge amount of weight, and keeping up with a punishing exercise routine. I was exercising in the midday sun, came home and nearly collapsed. My fatigue lasted for days before my Doctor twigged that I could be suffering from Lupus - he did the tests - and bingo.

As I said though - some days are better than others. Rainy days - now they're a killer! Hot water bottles, and sheepskin electric blankets are just divine for days when you're feeling wobbly. Also, I've found freshly juiced vegetable juice with carrots, celery, and parsley gives the immune system a good boost when you feel fatigued and know that you're heading for an `episode'. You may want to do some more reading up on what other options are available via homeopathic remedies. They haven't `cured' me - but it's certainly worth reading into. Personally, it was worth it for me, because the medications that I was prescribed were quite damaging to my kidneys and liver. I'm certainly not saying throw away the meds...but perhaps suppliment (with Doctors approval of course) the meds with some extra vitamins and good quality vegetables. I've also found fish oils helped ease the arthritic pain somewhat. I'm not sure if that's scientifically proven - but it helped me.

If she ever wants to chat about it - have a bitch or moan to someone - feel free to PM me. As I said, psychologically, it took some getting used to. I was scared, anxious and felt totally out of control. It took a good couple of years before I felt that I was managing it - and not the other way around.

Oh God - I'm going to get a reputation for having the longest posts around here!

 

[p2k1f]

I know 2 survivors - 1 I don't know how to get a hold of - the other, I saw her husband a couple days ago and know where he's working, so i'll stop by and ask for some info. she is the type to know about supplements, homeopathic remedies and diet - which i'm sure is important. doug's a construction worker and artist who always is working in downtown. - hope he's still on the same job. his wife, the one with lupus, looked rough for 1 or 2 years, but since then she's looked great. oh yeah, she owns a juice bar in downtown asheville so i can just find her.

 

[Tioted Snoil]

just to follow up on honeygirl's joint pain being helped by fish oils....certain oils have anti-inflammatory effects on the body which ease pain in joints. The best one from what I know doesn't come from fish but a seed. It is called flax seed oil. It is also a great source for omega 3 fatty acids. All the oils come in gelcaps and you can get them at drugstores and gnc. You may want to experiment to see which one works best for her.

There are all kinds of natural and herbal arthitis products out there that help with joint pain...they are kinda pricey because senior citizens by them by the case...many swear by them. The benefits are that they are not metabolised by the liver. Many drugs, like ibuprofen (tylenol) will eat a whole in the liver if taken at high dosages for long periods of time. Generally, anytime you see "not to be taken with alcohal" on a prescription bottle means it is metabolised by the liver.

You may also want to look into natural treatments...many times the medical profession will ignore positive results from natural treatments. Anti-biotics stopping stomach ulcers come to mind...natural treatments had included cabbage juice for years and it worked yet the medical profession ignored it (cabbage juice has and anti-biotic effect). Be wary of quacks trying to make a buck.

It is not the same in scope but I had severe tendonitis in my ankle for months...taking all of the standard prescription ant-inflammatories did not work...something I bought over the counter called "Joint Ease" got rid of it.

 

[Tioted Snoil]

supposeably the best thing to boost the immune system is the juice some type of grass. One small glass (maybe a quarter of a cup) is worth something like a whole week's worth of veggies. I can't remember the name but you have to get it fresh and drink it right away. I know Carolina Smoothy by South Park has it.

 

[Braves]

Thanks Tioted and everybody for your help. I knew this was a good place to come for info, especially the alternative medicine.

Please keep the info coming and experiences from people that you know, except for Wossa and JB. I wasn't too thrilled to hear about somebody passing away J/K. I know you mean well.