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coltsfan
10-28-2008, 08:43 AM
Do the symptoms of SLE and the way you feel get worse as you get older and you have it longer. Or do you usually stay the way that you are, except for flares? Does that make sense when you read it. It sounds good in my head, but so does everything else I say. Just not real good out loud. :lol:

KathyW1958
10-28-2008, 01:50 PM
Hi Coltsfan,
I have often wondered about the same thing. I have had Lupus for over 44 years and in some respects it has gotten worse, but it is still manageable. I think I just have the cycle thing going on with flares and remission. I hope that it does not get to the point where you I will pass and if it does I hope that I am old and you know not real young. I am going to be 50 and well yes in my case it has progressively gotten worse, but thank heavens this is happening rather slowly. I don't know how else to answer your question. You know there is no cure and they can basically only treat the symptoms. Hopefully one day they will have a cure for it. I hope that I have helped out somehow.

Hugs,
Kathy

coltsfan
10-28-2008, 03:17 PM
Hi Kathy,
I think that you answered my question. I am 37 now, but my aches and pains don't seem to be as extreme as some others on here. I was wondering if the disease slowly progresses in a way that eventually it will be worse and I am just in a lighter stage of it or if I will stay as I am. I know that some days I feel a little worse than others, but as of yet, it hasn't been anything too drastic.
Thanks for your help and insight. My brother has been diagnosed for 15 years. I have been praying for a cure since the beginning. Never would have dreamed that one day I would be fighting the fight as well.
Are you feeling well today?

sits_inthe_corner
10-28-2008, 04:21 PM
I'm 48 yrs old. I was pretty perky untill about two years go......that's when things got really rough.

I think every time our body goes through a chemical change. i.e. puberty, pregnacy, menopause, it seems to bring about changes in lupus.

I'm not diagnosed yet, but I've watched my mother and my sister go throught this as well.

KathyW1958
10-28-2008, 06:15 PM
Hi Coltsfan and SITC,
I am having a pretty hard time today, but it is due to the fact that I will have to have my Vitamin B12 shot tomorrow as I have to have them every month due to Pernicious Anemia. I can definitely tell when it is time for another B12 nasty shot. I have some pain in my knees and wrists, but not to severely, just mainly tired. I watch my grandson during the day while my daughter and her husband work. Daycare is very expensive and it helps them out and I dearly love my 4 month old grandson. He is adorable.

I hope you ladies are doing ok tonight. I hope that neither of you two are in a lot of pain or feeling ill. God bless.

Hugs,
Kathy

DrinkofWtr
10-29-2008, 08:22 AM
I can only speak for myself, but I must admit that through the years my symptoms have gotten worse. I am thankful that I will be able to collect Social Security and a small teacher's retirement in about 1 and a half years. My doctor told me I have probably had the illness since my early 20's and I am now 58 years old.

coltsfan
10-29-2008, 08:38 AM
Kathy,
4 months old, how adorable!! :D I have a great neice that is 3 mos old, but I don't get to see her very often. That is the only baby we have around. My babies are 14 and 15 now. I was very fortunate that my mother was able to watch them for me. Not only is daycare expensive, I didn't trust them with my kids.
Today is very achy for me. I woke up with the knees, hips, elbows and hands really protesting.
DrinkofWtr,
Thanks for the info. I was wondering about it. How are you feeling today? Unfortunately, I have about another 30 years for the retirement thing. If the stock market doesn't completely crash and I have a plan to draw from. We'll keep our fingers crossed and see.

KathyW1958
10-29-2008, 09:21 AM
Hi Coltsfan,
My little grandson is adorable. My parents died when my children were babies so they could not help me with them. I had to unfortunately hire babysitters and it was rough to say the least. Some were good, but then there were a few that were horrible. I ended up getting out of the job market when my daughter was 3, because my daughter got molested by another child that the babysitter was watching as well. I never blamed the babysitter as it was not her fault and she brought it to my attention immediately and I went right after the parents of the little girl that molested my daughter. I guess the little girl had gotten molested by her uncle and she did to my daughter what was being done to her. The uncle to the little girl went to prison for a very very long time and the parents lost custody of the little girl and her brother. I think that upset and scared me so badly that I had to leave the job market and take care of my children as a housewife until they were teenagers and then I went back to work until my health got to bad and had to get out of the job market again. I would rather watch my grandchild and know that he is safe and nobody is going to hurt him. I love children and can not understand how anyone could hurt them. I am glad that your parents could help you out. I am sorry that I kind of got off topic here, but I just wanted to let it out that it is hard to trust babysitters. I am sorry this is so long.

Hugs,
Kathy

sits_inthe_corner
10-29-2008, 04:24 PM
Hey Kathy

How did the shot go?

cheryl_v
10-29-2008, 04:53 PM
Hi all. Just wanted to comment that it is hard to find good sitters. I stay at home to raise mine. Then did home school for 2yr degree in child-care management. Decided to run a Home Day Care because of the rep day cares have. I wouldn't trust mine in one, and yes some times its the kids and not the adults who cause trouble. I try to treat all kids as mine. I meet with them and have them sit with me an hour with the kids. To observe them, and for them to observe me.

I have to admit too, they are very expensive. I only charge $15 a day and have them bring their food. Also only charge for the days they are here, and not for the days they don't. I also work on honor system. I watch for the week, you pay on friday for the days I had them. I even have half day rates, some are only here for 2hrs a day. I hate to charge so much for so little time. Sometimes I get screewed and they don't show up on friday, never to be seen again. It happens :roll: . I'm just happy i don't have to leave home to work, lucky actually.

I just wanted to let you guys know that their are honest day cares :D (toot-toot my own horn :lol: ). I wish there was more out there. For all of us hard working honest ones, its hard to run this buisness. To bad some people don't take watching kids more seriously.

To the grandmum's who watch there grandkids, your awesome. My mum or mum-in-law don't watch ours. Said there done with those days. Understandable, but feels heartless and willing to try and help.


Hope the pain doesn't get to bad as we age :D .

coltsfan
10-29-2008, 06:49 PM
Hey Cheryl,
I wish there were more people out there like you. I was fortunate that my mom quit her job and stayed home to babysit when I had my first one. I was young and way overprotective. (still am). There aren't very many people around here that will keep your kids except for those big daycare centers where your kids are a number not a person. When I was a teenager, I used to babysit. They don't even do that anymore. Weird I guess. Anywho, kudos to you for being on the side of the kids.

KathyW1958
10-29-2008, 07:20 PM
Hi SITC,
I gave myself my B12 shot this morning. These shots are miserable as they sting. The needle is not the problem, it is the medication that burns. The darned medication is devil red lol. I started giving myself the shots in July, because it cost to much to go to the doctor every month for the shot. The worst time I had was the first time that I had to inject myself, the fear factor was there big time, but my twin was visiting and she bolstered me to do it and get it over with. I asked the doctor what would happen if I did not take these shots and he told me right out that I would die from either a heart attack or a stroke. I did not like that picture, so I have to do the shots. It stinks, but the ulturnative is worse.

Hugs,
Kathy

cheryl_v
10-29-2008, 08:15 PM
Hi Kathy. What are the B12 shots exactly for? I here of many people of various ages saying they're going in for their B12 shot. Sorry yours is needed so severely. Hope your health stays up.
Is it really hard to give yourself the shot? How do you make yourself do it the first time? Must take lots of courage. I've had those shots were the med burns, do not like either :shock: .

KathyW1958
10-30-2008, 05:10 AM
Hi Cheryl,
I have to take the Vitamin B12 shots once a month, because I have Pernicious Anemia. I got diagnosed with Pernicious Anemia in April of this year. I was going to the doctor to get the shot, but then I found out that I could not afford to go and get the shot thanks to my insurance. I had to learn to give myself the shot in July. Boy the first shot I gave myself in July was a real nightmare to say the least. My twin sister was visiting and she helped to calm me down and coax me along. I don't think that I could have done it if she was not here. After stressing out severely until I got physically sick and managed to give myself the shot, I realised that it was not that bad after all. I mean sure it hurt, but I have no option, I have to have the shots or I will die. I know when I tried to tell the doctor how scared I was about injecting myself his response was to laugh at me and tell me that he had little old ladies that inject themselves. I nearly cried and got out of there as fast as I could.

I believe that the Lupus has attacked my intestines and stomach and damaged the Periatel cells so now I can not produce Intrinsic Factor which you need to absorb Vitamin B12 from foods. Your body needs B12 to produce red blood cells. I hope that this helps to explain it.

Hugs,
Kathy

coltsfan
10-30-2008, 05:50 AM
Kathy,
Wow! I guess we all have more strength than we think we do. I hate needles myself. Getting blood drawn is a nightmare for me.
That really makes me angry about your insurance company. Who are they to decide that your doctor can't do that for you. It always makes me wonder, if they had to do what they make everyone else do, would the rules change any at all?
I was going to ask you yesterday. How is your daughter now? Was she young enough to not be to severely damaged by what happened to her?

KathyW1958
10-30-2008, 06:19 AM
Hi Coltsfan,
My daughter is 23 years old and married with a beautiful little boy. She was 3 years old when she got molested by a 7 year old girl. She is ok from it. I mean at first she was very upset about it, but thank heavens I had taught my kids about good and bad touches and to tell if anyone did anything to them that was not right. She immediately told the babysitter what the girl had done to her. I talked to her about it and that the little girl that did that to her was being hurt by her uncle you know when we found out about it and that she did this to my daughter out of frustration about what was happening to her. Thank heavens the girl did not damage my daughter, but my daughter was very leary of older children after that experience. My daughter only mentioned it a few times through the years, but she knows that I did not just say oh well. I acted on it and got the Uncle arested and the children taken out of that home and placed in foster care pending adoption. My daughter grew up to be a very good person and works at a really good job and is married with her own son now. She is fiercely protective of her little boy too. I think that her being molested has made her that way too and she told me that she will teach her son and any other child she may have in the future about good and bad touches just like I did her and her brother. I told my daughter that there are good and bad people in this world and that she has got to be careful of who she associates with. I don't know what else to say other then that thank god she was not damaged.

Hugs,
Kathy

DrinkofWtr
10-30-2008, 07:53 AM
Dear Coltsfan:

I don't think any of us knows what the future holds for us in this economy.
I just know that I am getting up there in age, and I don't feel well. Don't really know how much longer I can keep working, even P/T.

coltsfan
10-30-2008, 08:29 AM
Kathy,
I am so glad everything turned out well for her. And you get a wonderful grandchild. Hopefully that is far into the future for me. My daughter will be 16 in two months.
How are you feeling today? Do you get sick after you take your B12 shot?
DrinkofWtr,
I know what you mean. It is scary not knowing what is going to happen. I know that my retirement fund has lost a little of $6000 just this year. Hopefully it turns around quickly. Maybe after the election is over, things will even out. Then we can have a boom and maybe you can retire a little early. I always say maybe I'll win the lottery and get to quit, but I don't play. :)

cheryl_v
10-30-2008, 08:54 AM
Thanks Kathy, that explains it well. I like learning new info. Info junkie at times :oops: , full of sinceless knowledge.

KathyW1958
10-30-2008, 09:28 AM
Hi Coltsfan,
How are you doing today. I fortunately do not get sick from the B12 shots, in fact I get to feeling better after them. I guess my body starts to deplete the B12 and that shot restores me to normal. I have gotten to where I can do the shots without any problems. It is just a shock is all when you find out that you have to inject anything into your own self, but I am ok with it now.

Hugs,
Kathy

coltsfan
10-30-2008, 10:10 AM
Hey Kathy,
I've been better, but thanks for asking. Today is the first day that I have felt so badly all over, that I want to curl up in the bed and cry a little. I've had the achy knees, elbows etc., but today is all over.
Was the Pernicious Anemia a side effect of the lupus or just something you have along side of it?
Robyn

KathyW1958
10-30-2008, 11:35 AM
Hi Robyn,
I am sorry to hear that you are not feeling well today. From what the doctor told me it is a seperate Auto-immune disorder, but shoot, Lupus can attack any part of your body and even your stomach and intestines. I think that it damaged the Parietal cells in the lining of my stomach and intestines, so that I can no longer produce Intrinsic Factor. This is what I think has happened to me and the doctor did agree about that too. I have had Lupus since I was a small child, so it stands to reason that this could possibly happen over all the years. I will be 50 in December. I too am having pain in my thumbs and knees today. I hope that this never happens to you or any of my other friends that comes in here. I think that Saysusie has to take B12 shots too. I think I remember her telling me that in the forum. I don't know though.

Hugs,
Kathy

Kimmy
10-30-2008, 04:56 PM
Hi Kathy,
I also have PA and have hypothesized the same thing about Lupus attacking the parietal cells. I, however, feel really sick for a few days after my shot. Nauseous, heart palpitations, the works. Has this ever happened to you? Mine is coming up on the 4th and I'm not really looking forward to it. I was surprised to hear at how rare this combination actually is, considering that auto-immune disorders tend to overlap.
I hope you are feeling well today!
Kimmy

KathyW1958
10-30-2008, 05:22 PM
Hi Kimmy,
I am sorry to hear that you are having nausea after the shot. I don't have any problems after the shot. I am wondering if you are getting your shots at the doctors office or do you do your own injections. I give myself my shots in the top of my legs and I alternate legs each month. I don't understand why you are getting sick from the injections. Have you mentioned this to your doctor? How old are you Kimmy if you don't mind me asking? I will be 50 in December. I do definitely believe that the Lupus attacked my intestines and stomach lining and caused this to happen. I think that they need to look closer at this as I think there will be in the future more folks with this as they age. Hmmmm it makes you wonder. I hope that you don't get sick after the shot on the 4th. You know though that without the shot you could end up dying, so please do get the shot. I will have you in my prayers ok.

Hugs,
Kathy

Kimmy
10-31-2008, 04:53 PM
Hi Kathy,
When I was first diagnosed, I had to receive 5 injections over 5 days. During that time, my boyfriend (whom I live with) came with me and got trained to give me my shots, and he is the one who gives them to me monthly. I have told my neurologist about the nausea, and he said it was the first he had ever heard of that happening to someone. It's lessening, so maybe it has to do with the interactions with all the different meds I'm on. I'm 25. I was diagnosed with PA at the end of march, and then hospitalized a week later, from what turned out to be a lupus attack and diagnosed with lupus. It's been kind of a whirlwind!
Have a happy halloween! :D
Kimmy

KathyW1958
10-31-2008, 05:35 PM
Hi Kimmy,
Wow you are so young to have Pernicious Anemia. I am wondering if you are also iron deficient. I don't have the iron deficiency with it. It is weird that they injected you with a B12 injection for 5 days in a row. I had to get a B12 shot once a week every week for 4 weeks and then it went to 1 shot every month for the rest of my life. I will be 50 in December. My Rheumatologist believes that I have had Lupus since the age of 5, but shoot I did not get diagnosed until I was 36. In my case the Lupus was very mild until I hit 35 when I got the chickenpox and then bam it went full blown and nearly killed. It started affecting my heart muscle. It has been rough going every since then. I think that the medical community should definitely look to see if there is a link with Lupus and PA and try to do something to protect the intestines and the stomach from being attacked by the Lupus if that is even possible. It makes you wonder doesn't it? Oh well.

I want to wish you a very happy Halloween.

Hugs,
Kathy

Kahalagurl
11-07-2008, 03:17 PM
The dr's at the Mayo clinic told me that the disease/symptoms should remain relatively the same, that it doesn't get progressively worse as you age.

Kahalagurl
11-07-2008, 03:18 PM
whoops i posted this in the wrong thread, sorry!

NoodleMom
11-09-2008, 10:37 AM
I am 47 now will be 48 in Dec. So I was 46 when I was diagnosed just a year ago and re-diagnosed one month ago. I did, looking back have several different symptoms at different times in my life so I probably have had it for quite some time. If say I did have it before diagnosis then yes it has gotten worse.
It is interesting that when we have had great hormonal changes that things get worse. I have had some reproductive issues and had an abalation this past summer to remove fibroids and polyps. He said that I would be hitting peri-menopause soon. Anyway I wont be getting pregnant anymore and my perods are lengthening too. I used to be every 25-26 days. Last month it was 27, this month 29. THe abalation did have the potential to cause my periods to go away completely. I am waiting for that.

Kasey

coltsfan
11-09-2008, 06:28 PM
Kasey,
That is kind of interesting. I, as of yet, do not have the official diagnosis. My gyn ran the tests but is sending me to rheumy for dx. I went to him to begin with because my periods were getting weird. I was never what you would call regular to begin with. 40-45 days. Then I took the Depo shot for birth control. When I went off of it, I was regular, every 28 days for like two years. The last three months have been 29, 30 days and they only last 24-36 hours. Makes you seriously think that hormones do play a big part in it.
Robyn