Hello there, I guess this is where I tell a little about my self, regarding lupus and how I got to know her, so here goes a little bit of my life story. I am 34 years old currently living in sunny southern California with my husband and two boys. I simply LOVE the winters here as soon as the weather channel announces  it will be 80 degrees or higher I want to run for Main! Maybe Seattle would do… I have a severe allergy to the sun, amongst other things, due to my SLE (Systemic Lupus Erythematosus). Sure the cold bothers my joints ,sometimes, but nowhere nearly as much as the sun and heat bother and aggravate my lupus symptoms. Move? Love to, as soon as my husband can acquire a ‘position of choice’ at a less sunny, more ‘vampiric‘ like  place .

I have had Lupus all my life and was not diagnosed until 2006 at UCLA department of rheumatology. It was believed that Lupus was predominant in women ages 17 to 34. I was one woman to prove them wrong on that age theory.  It is now known that kids, men and women may fall ‘victim’ to lupus.

It was very difficult, first for my mother, a single parent taking care of a child who would get ill and be in pain with low grade fevers; Some weeks better some weeks worse, some days not sick at all and the doctors were clueless. Most of the time they would prescribe antibiotics due to the fever. The doctors had told my mother I had Rheumatic Fever, an inflammatory disease that may develop after an infection with Streptococcus bacteria (such as strep throat or scarlet fever). The disease can affect the heart, joints, skin, and brain. As I became an adult I sought specialists to figure out my ‘puzzle’. I was having episodes of horrible pain, I could not even undress and bathe without assistance during some of these flare-ups. Sometimes I wondered if this was real, or if it was something I might just be exaggerating and building up in my own mind. I would try to get up and do things as usual because ‘I was not going to be bullied by this, this THING’. I didn’t know what this was and nobody could tell me!! Of course doing things as usual and over doing it would NEVER work for and would always make things worse for me. So I would come to the realization, once again, that this was not in my head. This was real, unmistakably, cry in bed, want to scream out in anger REAL…

I am a strong person. I am used to taking care of my self and my family and I was suddenly rendered useless without warning by some mysterious shadow that would come and go as it pleased! Ruining my plans…

I saw many doctors. Some wouldn’t even take the time, take one look at my records and say “well, It’s Rheumatic Fever.” Others would want to put me on any anti depressant  in the book. I tried a couple, they did not only not make me feel better, the side effects were not welcomed by me or my body! I went in with a mild flare up to a new doctor who sent me in for blood work. Three days later, she called me in to her office. She asked me if any body had ever talked to me about the possibility of lupus or anything like that… I said no and asked why. She said my ANA tests were abnormal and she said that put together with some of my symptoms might be indicative  of this. She could not make the call I would have to see a rheumatologist. It could NOT be that simple… right? All those doctors, all these  years! I could not wait to find out so I went directly to make an appointment.

When I finally walked in to UCLA, a one hour consult, some blood work, a lot of questions were asked and answered regarding what felt like everything including my entire childhood as far back as I could remember. The doctors would explain certain things to me before they would continue parts of their examination. I started to wonder if   they were keeping something from me as they would write something down and exchange glances. The examination and Q&A process was over and the doctors, two of them sat down in the room with me. They were finally going to tell me…

“You have Lupus” were the most bittersweet words. I took a deep breath, my eyes welled up. Not a clean bill of health, but I was not crazy and I knew something was wrong-not  something, I have lupus and now I can move forward. The doctors presented me with some options in medications, some reading materials with a beautiful butterfly on the cover. They told me I needed to go on an immunosuppressant  immediately and also something called an antimalarial drug (Plaquenil). I wondered how all these drugs that seemed to have nothing to do with lupus would help me and after trying so many medications  for all the wrong diagnosis, I was afraid of the side effects. I told the good doctors I would think about it but they were less than happy about that. they were reluctant to let me leave without at least the Plaquenil. They explained that it would help keep the inflammation in my system down which would help keep my flare-up activity down and therefor slow down the damage to my organ system. That made me change my mind so I took the slip for the Plaquenil and took information home on the Imuran (immunisuppressant).

Taking the Plaquenil helped but only after continuous use and noticeable joint pain relief after about three months of use. I still continued to have bad flare-ups and after doing research regarding the Imuran decided to try it. It helped lessen the intensity of my flare-ups and I believe it also helped reduce the amount of flare-ups I have been getting per year. I do have to stop taking the Imuran if I develop any kind of infection or become ill until I get better and then I can resume my original dose. I also take steroids, only I opt to not take them regularly. I take them only when I feel like I REALLY need them, this way they help and their harmful side effects are kept to a minimum…

Will keep you updated in new posts

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