I have myocarditis with the lupus so I have been spending too much time in the hospital and not enough time out :( I lost my job and things have been very depressing..............oh well, what can you do?

The past several months have been incredibly stressful, hectic and traumatic. My parents have split up after 24 years of marriage. My step-father left my mother for a woman younger than me! That was a huge shock to our family and all of their friends as they both are regular church-goers and stable people. This has hurt my mother alot as well as the rest of my family. There are also suspicions of a drug addiction. I do not know-it could also be like a middle age crazy type of thing.

My husband and children are doing well. The kids went back to school August 14th and so far seem to be enjoying it quite a bit.

I have been working like a dog!! I am a manager for Family Dollar (a retail company) and I love my job but it is so hectic right now. And I now have an ulcer on my cornea of my left eye. I have been on medicated eye drops for a few days now ad I think they are finally starting to work!! This is good news since I was reading an article that said if they d not heal with the drops then they would have to do a cornea transplant operation. I have no idea how that works but it sounds scarym Other than that and the typical fevers about once or twice a week I have not been feeling too bad(knock on wood) and I am grateful for that.

Anyway, it is hard to see with my eye messed up but I did want to drop in and update in case anyone is still reading this :)

This new job (it is not really new anymore) has really taken a toll on me but I do not know what else to do. The money is great but the job is hard and very physically demanding. It seems like there is so much to do and I can not get it done and done right. They do not want to give me enough hours to run the store the way it should be run and that makes it very hard also.

We had a VP visit yesterday at the store and they said it was the best the store had looked since they could remember and that made me feel good at least they did notice all my hard work but at the same time, it was like talking to a brick wall to get them to understand we need more hours, not just my store but all of the stores the company owns. It is impossible to keep the store as neat and tidy as I would like plus get all the freight on the shelves and take care of customers and do the paperwork and the myraid of other responsibilites when I can not utilize my help in the best most efficent manner.

I try to remember what my doctor said-STRESS=PAIN, but my gosh-my husband has told me since day one, if I took this job he would take care of the house since I put in about 60 hours a week and he works 40, but that is not being done-he has Saturday and Sunday off every week yet today is my first day off in eleven days and I have had to cook dinner every night this week and last week and make sure the kids are doing their chores and doing all the follow through because he is still doing nothing. He gets off work and he is done for the night. I get off work and have to come home and continue working and I am fed UP!!

I think the biggest part of my problem right now is through friends I have heard in the past week about three people with lupus dying. I get scared especially when I am still running a fever so much and I am so swollen and sore everywhere. It just serves as a constant reminder that I am not the person I used to be and I will probably never be again.

My mother and my stepfather are getting divorced and that was a big surprise-they have been married for almost twenty-four years-he was having an affair. My mom is really struggling because of this and she has COPD and other health problems and I am worried about her and now I am so far away in Florida and I really think I need to go home and try to be there for her. My husband is going to throw a fit if I suggest going home. Part of the reason we moved here was because his mother was alone and I did feel like we should be here for her even though she has two other kids living in the area, but now I feel bad because my mother is alone. I wish I had a guardian angel who could tell me what to do...................then again I am sure we all do.

I have to close tonite at work and then open in the morning and I am already exhausted beyond belief right now-too bad I can not just sleep for about 40 hours-that is what I think I need.

The fatigue is so bad sometimes that I just want to lay down and not have to get up. If anyone with lupus has some useful tips for beating the mind-numbing fatigue PLEASE share.

Namaste

I am still in the midst of a "flare" and I have started a new job about 6 weeks ago and I just keep hoping that I can keep it together so I do not lose this job. I am managing a retail store which is GREAT money and I love the job but it is so demanding and too many hours and I wonder honestly how long I will be able to do it. It is between 60 and 75 hours a week which is hard for someone in good health but even harder for someone who has a constant fever and swollen achy joints.

I have had a bothersome symptom lately also. I have had the numbness and tingling in my legs, arms and private area for over a year now (coming and going) but now I am waking up every night with my arms tingling really bad sometimes I have to wake my husband up to rub them because I can not move either of them well enough to rub them. This is really troubling me-if anyone reads this and knows what could be triggering it PLEASE tell me as it is scary, anyway that is all for now-take care and NAMASTE :)

I want to learn how to live happy with this illness. I wish I could just wave a wand and feel better about it, but there are no fairy godmothers and no magic wands so I am going to have to find it in myself to not let this get me down. I am too sensitive for my own good sometimes and that does not help. I do not think why me though, I think why not me, others have it alot worse than I do and they manage to cope and stay sane. I envy people who can rise to every challenge life hands them, maybe one day I too will be able to do that? At least it is a great goal to have.

Namaste

Woke up again with a fever, but at least it broke early, no excuse right now as to why I feel so lazy and unmotivated to do anything- there are so many things I need to do but I can not seem to make myself get up and do them. I am not ready to go back to work tommorow at all-I need a couple of days off with no husband and no kids, where I can just lay around get dressed when I want to and if I want Total for dinner, pour a bowl and call it done. I think even healthy normal people want that once in awhile.........maybe I am not so different from everyone else as much as I think I am.

They have been researching stem cell treatment for lupus. I wonder how bad yours needs to be before they will try it on you. I would volunteer to be a guinea pig for this research. Even if it does not spare me some of the worst parts of this disease maybe they would learn something that would spare others from some of the trauma this causes.

I am homesick also-I want to see my mommy but it is not possible right now. My husband does not understand why I am homesick already and I do not know how to explain it to him, but part of it is because I have no friends here and I am lonely. I am used to having friends to go to the mall with or just to hang out and I do not have that at all here. I do not know why people do not seem to want to be my friend here. My husband says I am not trying hard enough to make friends here. Maybe that is true but also I don't go anywhere but work and home. Most days it is a struggle to accomplish that.
I wonder if there are any lupus support groups in Naples?

Namaste

One of the psychological problems I carry from my past is the FEAR of being fat-I rarely eat a dessert due to calorie content and I rarely eat seconds even if I am still hungry because I know there are fat genes waiting to get out. Now with the thyroid not working and on the steroids for who knows how long-I am going to get fat also. How much more can one person take before they give up? I am still running a fever and feel like hell, hurt all over and now this too. I know I am sounding like I am having a pity party and that is why I waited to update because I was much more depressed a couple of days ago. I guess when I think about doing this diary I wanted to make people feel positive about the disease and educate them as well but lately it is so hard to be positive........there is blood in my urine so there may be kidney involvement with this flare as well. Sorry to sound so negative but there just was not any good news for me..............maybe next time?

Namaste all :)

They want to put me back on steroids again and I do not want to go on them but I think I will have to-the fevers are not going away on their own nor with the other meds. Steroids are so hard on your body and so good at the same time. I look like hell again and I know that I should just go back on the steroids and not argue about it, but it is so hard to not eat everything in sight when you are on them. This last time I did really good though-I did not overeat at all. Anytime when I wanted more food I just reminded myself that it was the steroids and not that I was hungry and I walked away from the food, but the longer you are on them the harder that is to do. I would love to hear from others who have been on them what they did to avoid the cravings that come from being on them.

As soon as we get our taxes I am going to be starting real estate school her. I am excited about that and can not wait!! I will get the chance to make really good money and basically set my own schedule so if I am feeling crummy I do not have to do a lot. At least that will allow me to work around the lupus for the most part.

I asked my husband yesterday what do we do if I have that lupoid sclerosis and he said he did not know. I am really scared that the rheumy is going to tell me that I have that instead of just lupus or instead of just MS. It seems like I get used to the idea (kinda) that I have lupus and now they are throwing something else in the mix.

With a chronic illness like lupus it is easy to feel sorry for yourself and I do it frequently but I am trying not to as much anymore but it is so hard not to. I want to have energy, I want to feel normal again (whatever that is) and I want to be able to stay up late and do the things I used to do. Yesterday I got a lot done around the house but it seems as if I am paying for it today as I have no energy, no ambition, and a fever again :(.

If I have the lupoid sclerosis, I am afraid that I will lose the ability to walk, and I will lose my eyesight at some point-that terrifies me. I should not worry about it until I know more but I can not help it.

I am sure I will update more tomorrow after the rhuemy visit..................namaste.

I am tired all the time again and still running a fever-it is crazy!! I have like one good day then four bad ones in a row and I know other people are sicker but I am too and I am still going to work every day-I need a long weekend that I can just stay in bed and eat pop-tarts-lol.

I go back to the rheumy on Monday and I hope he has good news for me instead of wanting more tests.

It is hard to have this disease and still look almost normal on the outside-it would be easier if I looked "broken" then people would know when they looked at me instead of looking at me like I am lazy-I want to scream that I am not lazy and I am not crazy!!!! I was normal once and I want to be again!!

If it sounds like I am angry and having a pity party it is because I am........................til next time...........namaste.

It is 67 degrees here and I am freezing!! Amazing how much impact a fever can have on your body. Everyone is in t-shirts and I am in a sweatshirt and frozen-geez. Sometimes I get so sick of being sick. Other times I am much better about it knowing that there are a lot of people who suffer from this illness and a lot of them suffer from it far worse than I do. I am grateful that at least not yet there is no kidney involvement-see it could be worse :)

Anyway-I am going to go to bed. It is only 6:30 but I am wore out............namaste all :)

I am going through the prednisone withdrawl which is awful no matter how many times on it-it seems so hard to wean down-fever goes back up, mood disturbances are rampant, and I feel like crap.

Not a lot to update today as far as how I am feeling or anything-feeling pretty yucky and swollen, and feeling a little tense over the blood work-up but otherwise ok..................

I am so guilty of not updating this unless I feel lousy-when I am feeling almost normal I do not update-this is wrong and I know it-I am going to work on not doing that this time. It is so hard to put into words what I am feeling right now. Anger, disappointment, and disbelief are close though. What do I do if it is lupus and ms? Who will take care of my husband and my kids if I can't?

Women spend their entire lives taking care of others-I think that is why immune disorders are more prevalent in women than in men-we are caretakers and sometimes we do not take very good care of ourselves in order to take better care of those around us. Or maybe it is the way we are set up-but there has to be a reason.

Most people (including me) are better when we have answers and now it is like he wants to start all over again. But it is a start so I can not complain and if I did who would care? LOL.

Anyway-will update more when I know more........................namaste:)