I decided to start this group in thoughts of getting out the frustration of the pain I am having today. I am writting on my laptop in hopes of not moving my hands the wrong way cause the pain is way to much to bear. Trying to figure out what I did this weekend to cause a flare but I have the idea. How can anyone with lupus go out and have fun. Is it worth the sweat and grinding of teeth when every joint is screaming. I mean I had a great weekend. Went out to a barbque and ate good. Watch the children play, weather on Saturday was good as it cleared up from a evening of showers. But I did work the grave, a twelve hour shift and got no sleep and then went to my friends house. Got home around 8:30 watch a dumb movie and went to bed cause I had to get up early to work and raise money for the special olympics. Got home from that and my son made me a big breakfast and Then the weather turned bad. I started feeling exhausted took a nap and then Had to pull a 4 hour shift at my night job. Got home around 8:15 and relaxed. I was tired still but feeling ok. Then I woke up this morning. OMG The pain has hit me hard. I can't even hold my cup of coffee with out wincing. I can't even take any pain meds cause I have to man the phones at the office. I am about to the point of saying what the hell. Dope me up. Take the pain away. God please have mercy on me. I go and squeeze my hands in hopes it will releave the pain some. Run to the R.R and run hot water to see if that helps some. I know I am rambling but hey this is what this is for. For those of you who have lupus know what I'm going through. Those of you who don't it is hard to understand. Some of my co workers know I have this dreaded illness but they can't understand cause they don't know what i'm going through. My G/F wishes she can take the pain from me. No you don't. I wouldn't wish this on anyone. Sorry babe. This one is mine and mine alone. Maybe one day they will find a cure. All I know is right now I just want the pain to go away. And what really sucks is that I get to go home only to get a short nap and pull another dreaded allnighter of a 12 hour shift. But the good part is tomorrow I get to come home and stay in bed all day and take all the pain meds I need to at least give me some relief. Turn the phone off and hide from the world. Give my G/f the truck and pray to god that no one needs me for the day.

Aug 29, 2006 11:00 AM

I finally finished my all nighter and my little bit of running around. Now I get to hit the sack and got my pain meds in me to at least level off the pain. I am still hurting but it is not as bad as yesterday. My friends ask how I'm doing. I get tired of telling them that I hurt or I just lie and say I'm doing fine. It really sucks having this and I wish it would just go away.

I had taken my G/f to get her lic. and they had asked her if she wanted to be a donor. It really bugs me cause I choose not to be a donor in fear of lupus may have gotten to my organs. It may not have.. but its the thought of not being able to help someone else because of this diesese. I don't even know if I can donate. But why give someone a kidney when it may be already half distroyed or a liver. I'm sure I can give some other body part but its the idea. Does anyone know if you can donate? I would really like to know. I don't know....I'm a perfectionist and if you give something like that it should be perfect for someone to live. Well these are my thoughts for today. My bed is calling and my body is waiting. I hope I feel better when I rise. I'm tired of being tired. until tomorrow I wish all a good day.

Ok...Day 3 of writing in this group diary....Im doing better but I'm still hurting.. It has been a good day for me and help keep my mind off the pain. Although I am pulling a allnighter I did get a chance to get a nap but tomorrow I got the feeling that its going to hit me hard again cause I know I will only get little sleep and and have to go to the office and man the phones in the afternoon. Then at 5:00 I can come home and try to relax. Haa!!! that will be the day. Thank goodness I premade some meals so all I have to do is crawl into bed and grab the remote and take more meds. God I feel like a druggie. But I can only take my meds at night or when I go to bed. So I get to suffer until then. This sucks......

ok...day 4 to day 5.... Been to busy to write.. I know I'm going to pay cause of the lack of sleep. Got up this morning and went to work...started out great...then ended up showing property all day and then my night work called wanted me to come in at 6.. I told them I'm not pulling a 14 cause of the lack of sleep so they are going to have someone come in at 6 to relieve me so I can go home and get some rest. I would have been up for at least 24 hours.. at least I don't have nothing to do all day tomorrow so i'm going to plan on getting some rest before this hits me again. I guess some people think I'm super woman or something. I can feel my body aching already and the stiffness. anyways I don't know why I do this but I guess I am quite stubborn and I don't give up to easy. I'm working at a career but I got to keep the night job going until I get secure enough to quit and stop putting myself though all this. I know it will happen soon and I can tell my boss you can take this job and you know what.....hahahaha. I'm keeping positive cause I know its going to happen. anyways all a good night until next time.

Day 6 or 7...it just seems to go by...Actually had a good weekend. Little pain but bearable. Went out and attempted to do some fishing which ended up in failure due to labor day weekend fishing and boating groups on the river. Out of towners who don't know how to boat and run over every single fishing line saying opps I don't know how to paddle a boat. Oh and we got to do this for 5 miles...LMAO then get out of the boat...Plus the river was shoulder to shoulder with fishermen from who knows where. It was eventful but I did want to catch a fish and my fave fishing spot was taken with that shoulder to shoulder of people....so I packed my things and headed home. I just got to remember not to go on a holiday.

Today...I just got some much needed rest and then I had everyone in the world call me to bend my ear and burn it red. But hey, ..I'm a friend with a shoulder to cry on. So until next time..I will write more.

ok...I havent been on here for a while. So its been quite a few days. I have just discovered Mullein and I'm going to give it a try. The meds I take for pain just don't seem to do it. I need to get back to the doc and see what we can do next but I'm hoping to get into a natural remidies like Mullein to help with the joint and muscle pain. And of course when I went to the Health food store to get this little herb. I found out that its been growing in my yard and I had been picking it and getting it out of my yard because I thought it was a pain in the butt weed and hear I find out that It may be something that may help. I could use this stuff as a tea, a soak, smoke it or make it out as a pill form. All I have to do is pick it and dry it out. I'm going to do some more research on it. But I hope it does the trick. It really would be nice to go to something that is actually good for you and won't hurt you. Has anyone else tried Mullein? Let me know if you had and how the results were. Its also called Awarwar..of course herbs can come in weird names. Chow for now.

Its been about 3 days of taking Mullein and it seems to be doing well. I don't hurt as much or at least I'm having a good week. I have been faitfully taking 2 pills twice a day and it seems to be doing the trick. I'll let you know in about a week if its just that or something else.

I have SLE Lupus and I talked to my Doctor Whenever I went to Get my Drivers lic. He said that we can be donors b/c they can use anything from our eyes to our skin to organs so anything that is healthy at the time of someones death is useable, So I signed up as an organ donor. B/C my uncle died b/c they didn't find a liver in time, and I hate to think that one day it might be me, so all it takes is a person checking organ donor to save a persons life, my whole family are organ donors. hopefully. I will never need someones organ, but I would like to think that because I am willing to give mine to someone when I die, that if I need one, one will be there for me. I would like to keep in touch with you, and know how you are doing, and what things you are trying for your lupus, and what things you have been through, please feel free to ask me anything. I've been through alot and I might have some helpful information. I would like to be added as a friend so I can find you and keep in touch. Just let me know. Thanks and good luck to you. Hope you are feeling Well.
Melody

Been off the board awhile...But I gave up on the mullin and just taking tons of vit and antioxidants. I swear I look at the handful of pills and I just want to gag. But on the upside Its doing better than the mullin. I haven't been ill. but I have had the pain but I can deal with that. I have been changing my life to a positive outlook and I don't let this get me down....no matter how much i hurt. Anything is better than focusing on the this...So I know I have this Lupus and I'm ok with it now and I take it one day at a time.