View Full Version : Hello all!
11-28-2008, 10:33 PM
Hello all! My name is Beverly and I am almost 30 years old. I have a little girl that is 17 months old. Boy is she a handful. I was diagnosed with both lupus and Sjogren's syndrome in May of this year. I am having trouble dealing with it all. I hate my rheumatologist. He is very insensitive and unprofessional. When I received my diagnosis he never even told me what lupus or sjogren's was and what to expect. He just writes me prescriptions and tells me he'll see me in 3 months. I am currently taking Plaquenil, Salagen and Restasis. I guess I'm doing ok on it. My eyes and mouth are still constantly dry. Today I woke up with every single joint in my body hurting. What can I do to help ease the pain a little. I feel like I'm a 90 year old woman. Well everyone that is all for now. I can't wait to get to know you all.
11-29-2008, 04:35 AM
Welcome to the site.
Having troubles with rheumy's is a common problem. There are some good ones out there, but most of us find we have to "manage" our rheumy's as well as our health issues.
When you have an appointment coming up, sit down a couple of days before hand and write down in point form what you need to discuss with them: Symptoms you've been having (no matter how small) As well as lingering questions that didn't get answered or new question.
Do NOT let me make you feel rushed. It's your dime and your time.
I know only see my rheumy once ever six months, so when I do go in I make sure I have presented all my issues.
As for your joint pain, there are some things you can do to ease that while you waite for the plaquenil to kick in. It can take months before you feel the effects of the plaquenil.
Which joints are hurting? For me it's my feet, knees and ribs. Feel around the joint for "hot" spots. An area that is warmer to the touch. If you find them put a cold compress on it for no longer than 10 minutes at a time.
I wear a soft "sports" knee brace when I'm doing anything physical, like house work or laundry or going for a walk, driving.
It helps to support the joint.
Do you have any swelling in the feet and legs? This usually happens when you have joint pain. Your body is flooding the area to protect the joint.
I wear compression socks as soon as I get up in the morning for about an hour or two. (Diabetic compression socks work best for me)
With the plaquenil, you will eventually notice that the pain is not as bad. You can actually do things that you haven't been able to do for a long time. You should also notice that the swelling eases quiet a bit.
If the plaquenil is upsetting your stomach or if you are having dizzy spells or headachs from it, call your doctor and as if you can take both pills at night with a single serving of yogart just before bed.
My family doctor recommened that I take mine this way when I complain of side effects, and I have to tell you it worked wonders.
You are an active mom so I'm sure that keeps you pretty busy. It is important to keep your joints moving. A light low impact excersize routine is a good thing to do.
If I sit too long my joints seize up, if I move to much...yep my joints seize up. You have to find the balance that rights for you.
It's very cold here and damp. I have polar fleece sheets on my bed which helps me sleep at night and keeps my joints warm and happy.
I use a memory foam mattress, I find it gives me the right amount of support, plus it's very warm and snuggley :)
I'm sure the others will be along soon to welcome you. Feel free to ask any quetions you like, this is a warm and friendly site.
By the way I am not diagnosed and not sure if I ever will be at this point.
My mother had lupus and my sister is diagnosed. I how ever have an idiot for a rheumy who is not interested in continueing testing for me even though I have many of the classic symptoms and have tested possitive on ANA test.
11-29-2008, 06:22 AM
Welcome to the site. My name is Kathy and I have SLE, Lupus and Sjogrens and several other Auto-immune disorders. What I am wondering is why your doctor did not put you on any of the NSAID's for the pain and inflamation of your joints. When you see your doctor again tell him right out that you want to be put on NSAID's. I am taking Sulindac (Indocin) which is a perscription NSAID (Nonsteroidal Anti-inflammatory Drug). Salagen is a good drug for the Sjogrens dry mouth and Restasis is good for the dry eyes, but it sounds like you need an NSAID medication. You can take some over the counter ones like Aleve or motrin. I would definitely address this with this doctor and also I would list all of my symptoms right down on a paper and any questions that I would need answered and discuss it with him.
There is no cure for these illnesses and they are chronic. It can be treated though. You need to be careful about the sun and flourescent lighting as these can trigger a flare. The worst thing though of all is stress. Stress will set off a flare very quickly. I hope that you keep posting.
There are a lot of good folks that come in here. You met SITC and she gave you some good advice. I hope to get to know you.
11-29-2008, 03:57 PM
hiddy ho, my name is Ms.Paula,I turned 62 this month.I am new here & old to lupus.
My mother died with it in 1984, I've had it since 1990. I know oh so well how miserable a person can get with this stuff. Like many of you I also have severe problems. you can name just about anything that is connected with lupus and I've probably have it.
For the life of me I don't know why the good Lord is keeping me here.
so happiness to all !!!!
11-29-2008, 04:23 PM
Hi Ms Paula,
Welcome to the site. My name is Kathy. I will be 50 in December, but have had Lupus they believe since I was the age of about 5 years old. I am no newbie to this horrendous nightmare called Lupus. This stupid disease has done a lot of nasty things to me too over the years. I guess the good Lord is keeping you here to help others to deal with this rotten disease. Well I just wanted to welcome you to the site and I hope to get to know you. Please keep on posting.
11-29-2008, 04:38 PM
kathy,do you ever get dizzy doing all that dancing?
I watched it for afew seconds, golly it makes ya' :shock: lol
like to get to know you too.
thanks for your time.
11-29-2008, 05:00 PM
Hello Ms.Paula and welcome
I'm 48 yrs old and not diagnosed yet. My mother passed away in 1987 from lupus.
My sister has been diagnosed with it shortly after my mother's death. She has thankfully been in remission for quite a few years although she has other health issues that she manages.
I've had symptoms myself since I was 19, but no one ever put 2 and 2 together.
Going on three years now, I've had alot of immune system issues and joint issues.
Glad you found us, and I'm sure you will have alot to add to this site.
I'm sure you'll find the folks to be friendly, it's a great place to share with others.
11-29-2008, 05:29 PM
thanks for the acknowledgment. It's really nice to have someone to talk to.
all my family are gone,except for my two sons & theirs. they took all my money & desserted. I'm not even allowed to see my 5 grandchildren.
all my friends have either moved or died. I have two dogs,but they don't have much to say. :lol
I don't go anywhere,because the gas is too high. the only time I get out is if I have an appointment.
that's when I do errands,too. I talk everyones ears off at all the stops. they sure get tired of me. all these people on this site I'm sure,wants to talk about one thing or another and has probably felt like no one was listening. I can't understand why people shy away from sick people !
But the good Lord has got me to this point in time,even if his ears are aching. But I really am thankful for anyone taking time out just to say hello.
happiness to all
11-29-2008, 06:56 PM
Awww ms paula,
Life can be very lonely sometimes. Especially when we are missing our loved ones who have gone on ahead with out us.
There's not a day that I do not feel their presence in my life. I've lost quite a few family members. I like to think of them watching over me, perhaps guiding me.
I have a cat, a dog and a husband :lol: all three of them males :P
Feed clean and pick up after them lol.
What type of dogs do you have?
11-29-2008, 07:32 PM
your lucky that you still have family around. this crappy lupus has become the only company I have, and I keep asking it to leave,but it's like any bad guest ---- it won't go. lol
my dogs are so loving, the male is a black lab and the female is a great pieranese.I had a doggie door installed last spring, oh boy what a difference it made.now they come & go as they please. the only bad part of it [not counting the grass they bring in] is when they bring the field mice in,they act like it's a gift.lol but I do praise them.
I was in the grocery business for 33 years,after the lupus ,I did little jobs.
I wrote afew stories & sold them.I've designed some product logo's.shoot,I've even stuffed some envelopes.last winter I had a bull out here in the pasture for a man,he needed to get him away from the girlies!! I fed him,watered him.but they didn't bring him now,because I made him a "big" baby. he's not as aggressive as he should be !!!
I thought it was better if he didn't try to kill everyone !!lol
so thanks for the time,
happiness to all,
11-29-2008, 08:07 PM
Wow ... those sound like beautiful dogs.
My aunt use to breed pieranese. She had two adults and 8 pupps in the house at one point lol
My dog is a 12 yr old german short haired pointer. I also have a male black tom cat who's 5 yrs old.
Both are loving and they are best buddies.
:lol: you sissyfied a bull? Hats off to you, bulls make me nervous. Course anything bigger than me makes me nervous...
11-29-2008, 08:18 PM
lol,lol,lol, that is a great word for what I did to that bull. "sissyfied"
I'll have to make it a point to tell the guy that I "sissyfied" he's 2 ton bull,lol,lol,lol.
thanks for that,good point to this day,
11-30-2008, 06:39 AM
Hi Ms Paula,
A hearty good morning to you. I change my avatar every so often when I find one that I think is neat.
I read your post that your children will not let you see your grandchildren. I think that that is so sad. I only have 1 grand child so far and he is a beautiful little boy named Tyler. He is 5 months old.
Lupus is horrible. I have asked it exit stage left and well I guess it likes me to much. It just hangs around.
Well got to run for now.
11-30-2008, 12:11 PM
is it morning yet ! where is the coffee ?
I hate to even get out of bed, it's snowing!
I need to wash my car !!! lol
oh I guess it's a good morning-- for polar bears.
I can't stand the cold like I used too.
my feet are aching and the reynuds in my hands are
showing their ugly selves.
but here comes the dogs, oh great they brought me a
rabbit !!! don't they love me ??lol,lol
what will your day be today? I guess you have cold
I once lived in Baton Rouge,La. back in the 70's. I
remember when it snowed just enough to see it on the ground,
they let school out so the kids could play in it,my son thought
they were crazy. we were used several inches,before school
would let out. I wish I was there !
so love long & happiness to all,
11-30-2008, 12:20 PM
Hi Ms Paula,
It is not cold here, but it may as well be, because it has been raining all weekend long. How dismal. My wrists and fingers hurt a bit today. I guess it is all in the game with this illness.
I am wondering if they tested you for Pernicious Anemia due to vitamin B12 deficiency. I am wondering about this, because you have had Lupus for a lot of years too. I got diagnosed with the PA in May. I was just wondering is all. You know that the lupus can attack any part of the body at any time, so I was just wondering.
Well got to run and get me some lunch.
11-30-2008, 12:22 PM
are you up ? how is the day going to be ?
I sent to kathy,then I had to get rid of a rabbit!!!
what do you do on Sunday?
so have a wonderful day,
11-30-2008, 12:39 PM
How did you get rid of the rabbit? Did the dog bring it right on into the house? lol. I bet that was a exciting.
11-30-2008, 12:53 PM
I bury them or I put them on top of a fence post.shortly the red wing
hawks will come pick it up. great system the Lord has made, and the world
goes round and round.
these hawks have been here since 1999,I built this house in 1998. they
soon learned that they are safe here and make it their area.
they are very protective of it too.
I also feed a flock of doves, I took videos of them, then counted them,43 at one time. now it's a game of catch me if you can between them and the dogs.lol
11-30-2008, 01:19 PM
Hi Ms. Paula,
I bet it is pretty where you live. Do you live in the country? I live in a tiny little city. I live in a quiet neighborhood.
I bet the hawks are neat to watch.
I bet the doves are beautiful and I imagine they sure excite the dogs.
I just have two little cats that I keep in the house as I don't want them to get killed on the street. They are both range and white. One is a female and the other is a male. The male kitty is part manx and he is just as sweet natured as he can be. The female cat is a ferrel cat and not very friendly to anyone, but me and my husband.
Right now I have my son's dog here and he will be getting him today sometime. The dog is a purebreed Golden Retriever and very very pretty, but boy a handful as he is so playful.
Boy I can sure feel the fatigue a hitting me here, so I will get off of here for a while and take a snooz.
11-30-2008, 01:29 PM
I forgot your question about the anemia. yes they keep watch on my
iron level,which if I don't eat a good diet, my level drops off to nothing.
I take an iron pill each morning,but if it gets to low,they give me
airanes[sp] shots every two weeks or so,if that is not enough they send me
to the oncology clinic to put liq. iron with IV drip,which takes about 7 hours.so that's one reason the diet is so important.
hope this helps,
good day to all,
Hello Ms. Paula,
Thought I'd poke my head in here and say hello. I'm Rob, I'm 40 and was diagnosed with SLE in 2004, and MS this year. I'm also one of the few men here. My mother, also has Lupus. She's 72 now, and doing OK. Sorry to hear your Mom passed away.
I had to laugh at your rabbit/hawk story. I spent about fifteen years living in the Sonoran Desert in Arizona. It was beautiful, and full of wildlife. Unfortunately, one form of wildlife I encountered were some very destructive packrats. Nasty little suckers. Well, after they chewed up the wiring in my vehicles and dug into the walls of my house, I decided to trap and shoot as many as possible to get the ongoing damage under control. I would take them and put them on top of a fence post, and the hawks, and great horned owls would take care of the rest. I ended up having a female owl and her mate make permanent summertime nests in my palm trees, and suddenly my traps went empty, and I didn't have to keep my air rifle loaded anymore. They kept my place clear of the rats for years. As far as I know, they still are. I sold the place back in 05.
It's funny how nature works. It certainly finds it's own balance. Anyway, I just wanted to say welcome to our group. I look forward to talking to you again.
11-30-2008, 01:41 PM
Hi ms paula
Sorry I wasn't on much today. House work always takes the goods out of me.
I'm paying the price for doing too much at once. I'll learn one of these days. :lol:
Today was kind of a non day. Hubby had to work so we didn't do our usual Sunday stuff.
I was reading your post about your dogs with the rabbit and the doves.
My dog has a thing for catching small birds in his mouth. He doesn't hurt them ... he just looks at me with a "what do I do now?" look :lol:
Came in handy the day we had two sparrows fly in the house. He caught them one at a time, and I took him out side. He put them on the ground and go back in the house.
The birds sat there for a bit shaking the dog slobber off them, then flew up sat on the fence for a bit.
How was your Sunday?
11-30-2008, 03:07 PM
nice to meet you. one of my uncles lived in Tuson,Az. he talked about the wild life out there,but sometimes while he was drinking,the stories about the "bugs", "creatures", and the "birds", really became a real good horror
story !!! then I had a hard time figuring out the real from not so real !! lol
your the first man I've met on the internet with lupus. not to many guys are willing to talk about it. I know guys with lupus,but they get ticked-off if you try to mention it.
I never get tired of talking to people,around here everyone thinks of me as a bother,that's one of the reasons I have gone to the internet for my socializing. I figure out of the almost 50 thousand people just on this site,I'll be sure not to run out of ears to bend !!! lol,lol,lol.
so love hearing from you,
keep on talking,
11-30-2008, 03:24 PM
having a good day? your dog will come in real handy if you run out of groceries.lol pheasant smothered in red wine makes for a tasty dish,yum yum.
I lost my big red chow to the china flour in the dog food thing,thats why I got the black lab.I'm still learning things he has in his head. one thing he does is kinda spooky; keep in mind he is totally black,weighs about 137 lbs. he goes through the house as if he's in slow motion.he moves so slow and so quiet,from time to time he still scares me in the middle of the night.I just call it sneaking.I don't know if he was taughtto do that or it's a natueral thing.
when he's outside he patrols the fences as if he were the guard. he's so funny to watch.
happy,happy to ya'
Hey there Ms. Paula,
The only guys I know with Lupus are the ones I've met here. I've never met another guy face to face with Lupus. I do kid around about the whole "woman's disease" myth. I tell people who might not know much about it, that being a single guy with Lupus is a blessing because all the Lupus get-togethers are 90% female. It usually get's a rather uncomfortable smile from most people. I guess that most of my various positions in life required a fair amount of public speaking, so I figured what the heck, I'll talk about Lupus too. It certainly helps me personally to talk about it, and I hope that my words might help someone else as well.
About your Uncle in Tucson, he's probably not pulling your leg. There are some beautiful animals, like the Javelina, and the Mule Deer and Antelope there, but there are also scorpions and plenty of rattlesnakes. Had a few close encounters with them myself. Not fun. I live in Maine now, and we do have bears, but they're big enough you can see them coming! Other than that, it's pretty quiet here. You may have already said, but what part of what country do you live in?
11-30-2008, 03:42 PM
remember this; what you do today-- you'll pay for tomorrow, that was one of the hardest things for me. my mind says I can do this,while my body says oh no your not !!!
I was always doing something,activity,working,kids,husband,sports. I loved working,too much I guess,my mother used to tell me I was a workaholic. so,when the lupus came along I kept trying to work, I have died 4 times !!! they keep bringing me back,or the Lord keeps senting me back [uh] so it's like I told some others in another topic, you have to be selfish, learn where your middle is,not everyone else's.
happy time,this time,
11-30-2008, 04:17 PM
I live in Arkansas,no.west part,home of the Razorbacks!
kathy asked me if I lived in the country,yes I do,except people have started building all around me,thats the reason I bought the lot [3 acres] next to me, I only have 6 acres,but it keeps someone from bumping up to my back door. It's all fenced so that keeps the neighbors dogs and cats out and mine in. when I had the big red chow,he would either kill or brake the animals back, when they got in "his" territory. when I moved out here, there were 2 men that jumped the back fence one night while I was hanging insulation.the house was done outside,I guess they thought that there was something of value to steal,what they didn't know was the big red chow was on watch. the dog downed one of them by the neck,the other ran into rolls and rolls of barbed wire,he got tore up pretty good.when the cops came they saw the dog holding the man down,they ask if I could get him off, the man would yell and the dog clamped down
a little tighter, one cop went around to the next road where he picked up the other guy standing in the road bleeding. he came back,he saw that the dog was still holding the guy by the throat,they both started laughing. they wrote the report,talked to the one in the car and even visited with me. they finally told me to call off my dog, I snapped my fingers and he came sit down on my toes.
ooohhh, country life, what a thrill !!! something new all the time.
stay happy, share with others,
11-30-2008, 04:22 PM
Hi Ms. Paula,
You are so very right about what you do today you will pay for tomorrow. I have unfortunately suffered the consequences for my actions to darned many times and nearly lost my life on a couple of occasions due to stupidity and thinking that I could do what-ever-I-want. That is not a good attitude to have with Lupus. In an earlier post to someone that told me that they did not want to deal with Lupus, I told them right out that you will deal with it or it will deal with you in a very negative way. I am serious about that one. Sometimes we have to learn some hard and very sobering lessons and then for some stupid reason we get to feeling better and go stupid again. I mean this is the way I am. I think that one day, it may lead to my demise big time. I guess all we can do is do the best we can to deal with this illness. I guess it is what it is.
11-30-2008, 05:01 PM
If you can find that person again,tell them to come to this site and topic page,I would like to meet that person. if there is one thing they need to learn is; "GET OUT OF THE DEPT. MARKED COWARD". giving up is not an option !!!! you've heard the expression help thy neighbor ?? well,who knows this person may have the "genes" that cure lupus. I have scene too many that has given up or just can't or won't handle it.
What happens,they surely won't be able to handle!!! they become like a piece of fruit--- they slowly rot away. terrible ending for one of the greatest creatures on earth. so I hope you talk to them again.if you touch their ears-- it may touch their heart !!!
12-01-2008, 09:13 AM
Hi Ms. Paula,
I have tried and tried to remember who I talked to but I just can not remember who it was that I said that too. I hope that she listened to me and does decide to deal with this illness.
Well I managed to put a big fat bruise on my leg where I gave myself that stinking B12 shot. I usually do not get a bruise, but I think I hit a blood vessel. It will clear, but it just looks ugly. My husband got more upset about it then I did. He said, darn I wish you did not have to take them shots, but I have no choice. It will be ok. Thank heavens I only have to take a shot once a month.
How are you doing today? I am watching my little grandson. He is so cute. He will be 6 months old on the 4th. Well catch up with ya later.
12-01-2008, 11:06 AM
this website is alot to handle, I have went from one topic to another,then I have a hard time finding the person later. any secrets to moving around all this?
I got on the topic "email pal", I talked to a lady in a foreign counrty,now I can't find her again. I don't know if she has lupus,she just said she would like to talk to someone on this site.
happy awake,roll on,
12-01-2008, 11:12 AM
Hi Ms. Paula,
Have you checked under Lauri's lounge part of the forum. Usually the off topic things that folks talk about is in this area. I hope that this helps. I will also check for you and see if I can find it and then come back and let you know if I find it.
12-01-2008, 06:56 PM
Hi Ms. Paula
My heart goes out to you. I am so sorry that your family turned away from you during your time of need.
I live in Ohio. It is snowing and cold and man do I hurt.
I have a husband that is so afraid of the disease and of losing me he has a hard time listening to me and watching me when I am in pain and I have a 9 year old son, 8 year old daughter and 2 year old son. It scares them to death when I am in pain or when I cry, so pretty much I hold it all in and cry in private. Also, I have a reputation as being tough at work, so I try not to let the people I work with see when I am in pain (don't want to ruin my reputation of being a hard a--.....loll).
I am so greatful that I found this web site because I know I am not alone and I can share my feelings with people that understand the pain. There are great people here and so supportive.
My thoughts are with you.
12-01-2008, 07:38 PM
hello, it is so nice on this site, see we've both met new friends.
I've tried going to the senior center,but at this one, I'm too young !!
about 99% of the members are in their 80's and 90's !!!
so thats one of the reasons I turned to the internet for company. of coarse I found alot on it that just burnt me up !! I don't understand why people want to mess up their lives with drugs and porn, I always thought just everyday life was enough to screw with your head !!!
I hope you find the doctors and other medical people that can give you the right program to live with lupus.
I love to talk to people,so anytime you need to bend an ear,I'm here.