Lupus and What Not

I thought I would add a few blurbs from a great article in Woman's Day regarding Lupus and some of the frequent questions. Questions I've even been asked. It's a difficult disease which is misunderstood and thought I would share some of this information to help further along awareness of this disease.

"Why is lupus so hard to diagnose?"
"Like many autoimmune diseases, in which the body attacks itself, lupus is hard to pinpoint because it has an especially wide range of symptoms involving various parts of the body. And symptoms differ from patient to patient. Most people develop painful joints and a rash often caused by sun exposure, but lupus may also cause fatigue, depression, miscarriages, kidney problems and hair loss."

I have never miscarried although I cannot conceive and when I do the Invitro to conceive, docs do a progesteron injection for 7 weeks so that miscarriage does not happen. My rhuemotologist isn't ruling out that my lupus has something to do with that along with my endometrioses and hormone imbalance. All of which could very well be triggered from the Lupus but isn't proven. I also don't have kidney problems. I have lost a bit of hair mostly eyelashes. My hair just doesn't grow anymore, but I have never noticed a big loss other than my eyelashes. Oh my ....I used to have thick yummy lashes. Darn the luck.

"I know Someone with lupus and she doesn't seem sick _ Why?"
"People who have the disease often go through periods of remission followed by flare-ups. Experts don't know why this happens or even what causes the disease itself. They do know that lupus can sometimes run in families, and that environmental factors such as sun exposure, infections, stress, certain medicines and hormonal changes may exacerbate or trigger the onset of the disease."

I remember distinctly a time when I felt great. My body felt great. My hair was great. I felt healthy and in shape. I had done fen fen for about 3 months and only because a doctor recommended it. About 3 months later I contracted a viral infection of the trachea. I was sick for a long time. I've never been the same since. I get the trachea infection about every 2-3 years around the same time that I contracted it the first time. It isn't treatable. It makes breathing painful and it is horrible to try and get over and takes weeks. Also around that same time as the fen fen and infection, my dad was given 6 months to live after being diagnosed with cancer. So....stress, infection, certain medicines....yeah...go figure.

"How Do you know you have it?"
"Sometimes you don't, which can be dangerous, because early treatment can prevent the disease from worsening. The overwhelming majority of people with lupus may be sick with various unclear symptoms for at least 4 years before they get a diagnosis." (I went about 6 years before my diagnosis)

Other fun facts: only one-third of people with lupus develop the "characteristic" butterfly rash across the cheeks and nose. (I'm part of that one-third)
Nine out of every ten lupus sufferers are women, most of them between ages 15 - 44.
About 1.5 millions people have lupus, making it more common that cystic fibrosis or cerebal palsy.

I also get a rash on my legs....it's red....and it looks like a road map of the US. I don't know what it means, but when my Doctor in Maryland saw it, he said, "oh you are very sick!" Spoken in a slavic accent.
I'm lucky to have a great Doctor in Orem who looks out for me. I was given permission now that I am four months along to take one of the meds that helps me get through the day without pain and with a bit of energy.
I deal with depression I think because I remember who I was before the disease. I remember being very active and busy and happy and crazy and full of life. It is taking me quite a bit to realize I'll never be her again and I need to embrace who I am now even though I'm dull and slothful and hard to be friends with.
I'm lucky to have a great husband who takes it all in stride. He is really the only one who can get me down from an anxiety attack or build me up when I'm down. He's great at cleaning bathrooms .") and he does it with a smile. He also loves to cook, which is something I love to do but can rarely do especially now that I am pregnant and can't be on my normal regimen of meds and treatments and injections.
I'm lucky to live on the same street as my mom who has cooked for me and takes Parker when I'm in need. She's a great babysitter when I have doctor's appointments. Ryan's parents also take Parker. And he loves it and hopefully they love it and it is a big help to me.
So if you ever have questions regarding my disease, just ask me or you can to to lupus.org