What I wish people would understand

When I was diagnosed with Lupus about a year ago, I had no idea what path I was going to go down or how I would feel from day to day. I felt like I had a death sentence handed to me and I was not going to be able to watch my kids grow up. I know now that there are things that I can do to help myself and my disease. Also I know that the chance of me dying from Lupus is slim. The one thing that I wish people would understand is the symptoms that come with it. Looking back, I cant blame people because before I was diagnosed I was blind to what people are going through too. I always thought that it could not be that bad. I had a boss that had fibromyalgia and would have extreme fatigue to the point that she had to quit her job as a successful veterinarian to stay home and even then her husband had to do all of the domestic chores and feed the kids when he got home from a 12 hr day of work. I admit, I never understood and I guess until you live it, you can't. I just thought she was lazy and using it as an excuse. Boy am I so sorry. Along with Lupus comes chronic fatigue.....no one, not even my husband understands the way that I feel. Because of this I get pissed and defensive when someone complains that my house isn't clean, or I didn't get to something I said I would, or I wont go to the gym. It hurts. You think that I like feeling like this. Like I am inadequate, a horrible wife and mother and all while trying to fake it on the outside so no one will notice what it is really like for me. More days then not, I fight to stay awake while I am driving because I get so tired. I pray to god that me and my kids will get home safe. I pass up playing with my kids to lay on my bed and then am full of guilt for everything that I have missed and how they are missing out on their mom. There is no true way to explain what it is like being this tired unless you have lived it. I guess you could maybe say it is the kind of tired when you have a newborn, only it goes on forever and you never get caught up. I still don't think that quite is enough though. I would love to get help at home, like an organizer or cleaning person or something, but that costs money that we cant afford so I look around at all that has to be done and get even more overwhelmed. I am not writing this for pity, I am just writing this so that maybe when someone is cranky or rude or grumpy, maybe they are having a bad day or living with a condition that no one but them knows about. Now don't get me wrong, I have good days too...but I just wish people would understand how most days are.....

Good news....and well who knows

So I went for a biopsy on Wed for a lump that I have had for about 6 months that has been painful and they were not sure what it was...So yesterday when I went to the Dr's for my EKG they gave me the results of the biopsy...NORMAL..nothing to worry about...great news right....well then I had my EKG done.....they told me that while it is within the normal limits, it had a lot of artifacts in it so they are going to send me to a cardiology group to have a treadmill test. I asked them if they ever gave me good news anymore?? I guess on the other hand I have been feeling well, except for being a little tired but with 2 little ones what can you expect. I am thinking about getting a second opinion on my lupus because I don't have that many of the symptoms that they say are involved with it...maybe I just don't want to believe it but I have been doing well, and what does it hurt to exhaust all of your options..right???

Definition of Lupus

A lot of you have asked me what exactly is Lupus....since I am not good at explaining it...here is a brief overview of the disease. I hope this helps.

Lupus: A chronic inflammatory condition caused by an autoimmune disease. An autoimmune disease occurs when the body's tissues are attacked by its own immune system. Patients with lupus have unusual antibodies in their blood that are targeted against their own body tissues.
Lupus can cause disease of the skin, heart, lungs, kidneys, joints, and nervous system. When only the skin is involved, the condition is called discoid lupus. When internal organs are involved, the condition is called systemic lupus erythematosus (SLE). Up to 10% of persons with discoid lupus (lupus limited to the skin) eventually develop the systemic form of lupus (SLE).
SLE is eight times more common in women than men. The causes of SLE are unknown. However, heredity, viruses, ultraviolet light, and drugs may all play a role.
Eleven criteria have been established for the diagnosis of SLE:
Malar (over the cheeks of the face) "butterfly" rash
Discoid skin rash: patchy redness that can cause scarring
Photosensitivity: skin rash in reaction to sunlight exposure
Mucus membrane ulcers: ulceration of the lining of the mouth, nose or throat
Arthritis: 2 or more swollen, tender joints of the extremities
Pleuritis/pericarditis: inflammation of the lining tissue around the heart or lungs, usually associated with chest pain with breathing
Kidney abnormalities: abnormal amounts of urine protein or cellular elements
Brain irritation: manifested by seizures (convulsions) and/or psychosis
Blood count abnormalities: low counts of white or red blood cells, or platelets
Immunologic disorder: abnormal immune tests include anti-DNA or anti-Sm (Smith) antibodies, falsely positive blood test for syphilis, anticardiolipin antibodies, lupus anticoagulant, or positive LE prep test
Antinuclear antibody: positive ANA antibody testing
The treatment of SLE is directed toward decreasing inflammation and/or the level of autoimmune activity. Persons with SLE can help prevent "flares" of disease by avoiding sun exposure and by not abruptly discontinuing medications.