Newbie Just Saying Hi

Hi All,

I'm a newbie to the forum . . . spending my Saturday in my usual position: flat on my back on the couch (laptop on my lap, surfing) because I refuse to take it easy the rest of the week, feeling like I have been hit by a bus because I am so tired . . .

I am 40, and my life is generally unspectacular, living the typical American family life with a husband, 2 kids, 2 cats and a dog. My kids both have Autism, making life a little more interesting than it should be some days and my huband and I travel frequently for work - we both work for the same company, an importer of decorative goods.

My road with lupus has been interesting to say the least. It took close to 5 years for a diagnosis. Most doctors saying "you are sick and tired because you are depressed", while I was saying "I am depressed because I am sick and tired"! Endless blood work and tests, with always being told "there is something wrong, but we are not sure what" because my ESR was always elevated, and other things were out of wack. They suggested Lupus, but my ANA came back negative. So, nope, not Lupus. In the mean time, I continued to feel miserable, achey, tired always. As it turns out, I am one of the weirdos that is ANA negative, cytoplasmic staining positive. My previous doctors were only looking at the ANA negative, and (which I did not know at the time) had never pulled a full Lupus panel, only an ANA. All of the other hematologic abnormalities of Lupus are present, just not ANA positive. I have SCLE which seems to be in flare mode more than in remission mode and have had organ involvement and pleurisy as well.

I have chosen to go a different route than most, relying on diet modifications, stress management and rest to alleviate my symptoms and that seems to work most days, although there are days that it is really difficult to do anything but lie around because I am so tired and achey. Fortunately I have a family who understands. My husband is one of the 3 men in the world who are willing to help cook, clean and do laundry. My kids are great too, knowing there are days where mom is just too tired and usually try to do their share as well. My employer is great about it, too - if I am having a bad day (and we all know about those bad days, don't we?), all I need to do is call up and tell her that I need a day off. On incredibly achey days, I have been known to show up for work in my pajamas - nobody cares, everyone knows - plus I can work from home if I need/want to. I am really lucky . . . not everyone has the support system I do. Knowing that it is OK to take a day off if I need it and having the support I do at home has really made it manageable for me.

Anyway . . . that's me . . . love to travel, love to cook, love to read, love to sleep . . . and most days love life.

I look forward to getting to know you all . . .

Nice to meet you, Carol. My name is Anne. Chose the name "alienwife" because my husband is still technically an alien since he has not completed his citizenship yet (doesn't know if he ever will - he is not conviced he should).

I'm sorry to hear about your problems. I am hoping that your doctors can find the answers and get you the help you need. I know how frustrating it can be when they don't know exactly what is wrong and the dilemmas of actually finding out. In your case, if it is autoimmune, you probably won't qualify for a transplant you need . . . in my case, I will never be able to get health insurance (because my employer does not offer it) and my income level is such where I don't qualify for any type of assistance. Not that I am rich, but I don't fall into poverty level, either. Frustrating situation.

I chose the natural route for now because I wanted to see if diet modification and stress management would work for me and it does, for the most part. I am usually tired and aching, but find that if I push beyond the first wall in the mornings, I can usually cope through the rest of the day. This probably contributes to my complete exhaustion collapses on the weekends, but at least that mode of operation helps me to feel like I am at least somewhat normal. My doctor has recommended Plaquenil, but I figured as long as I have the mental, physical and emotional stamina to push through without, I would wait until I was so miserable I had no other choice. I have a TENS unit for the peripheral neuropathy, which helps tremendously and I have a husband to rub aching joints :)

I guess I came here to meet others who were dealing with my type of issues. It's really alienating when you have to explain to people what's wrong . . . my in-laws are not native english speaking. We go to visit them and they simply don't understand that I cannot partake in the European tradition of the all-night party (my brother in-law-got married last year and the reception lasted until 6:00 a.m. - I had to leave at midnight because I was so tired I was ill). They don't understand that I don't want to go on a 20K hike along the coastline through all the little cities. I have great support with my husband, children, mom and boss (who is also one of my best friends now), but it hurts when the other side of your family doesn't understand.

Ah well . . . enough of my moaning. My problems are pretty insignificant compared to others.

Hi Anne, Welcome to the forum. I'm certainly not pushing meds . . . but plaquenil is quite safe and it 'can' make a huge difference in the way you feel. I have used it for years and it is my mainstay med. I've stopped several times . . . but my quality of life is so much worse w/o it. My biggest concern is allowing this disease to unseen damage in my body. Sometimes by the time we can see damage on tests and before we have symptoms, we can develop organ damage. I hope you find some helpful info and some good friends here. It is so nice to have a place like this to go and see how others cope and manage. Blessings!

Hi Everyone,

Thanks for the welcomes . . . I have spent some time here this weekend and have enjoyed getting to know those who I have talked to . . . It's nice to have people to talk to who understand.

I think one of my biggest issues is guilt . . . I feel really bad that hubby and kids have to do so much around the house because I can't. While I have managed to accept that I can't do all that I used to/want to, I haven't completely accepted the fact that someone else needs to do it for me if it is going to get done. Hubby does most of the laundry, alot of the cooking, most of the cleaning. I can usually manage to go to work, but that's about it. Frustrating . . . I feel like maybe I should cut back at work, but I love my job and it helps me to feel normal.

Guess I am having a down day. Tired, frustrated. Would love to vent my frustration and throw something, but that would require me to move something more than my fingers.