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Entries in lupus (127)

Saturday
Aug082009

Getting Diagnosed.

Getting Diagnosed with Lupus...

I don't remember the date of how it all started but looking back I should have known that something was wrong with me. At 14, I was always tired, after school and it appeared as if I would bruise spontaneously. After what seemed like my 10th false Mono test, the doctors figured that I was depressed, so I was sent to a therapist who after finding me a "normal" 15 year old teenage girl thought my self-esteem would be improved by a nose job. (living in the San Fernando Valley, nose jobs were the answer to many teenagers low self-esteem) however my pre-operative bloodwork came back and my PTT count was abnormal. That's when the diagnostic fun began... the first blood test I was given was a blood time test by a newly certified phlembotomist who had never seen a patient not stop bleeding after 10 minutes, {I know because as a curious patient I asked her} as the staple mark on my forearm leaked blood for 10 minutes then 12... at 14 minutes she ran out of gauze to wipe the blood and called the doctor to ask what to do. Apparently after 8 minutes, she should have put pressure on my arm and stopped the bleeding.

Oh well, that was the beginning, I was tested for anemia, leukemia, cancer and Mono again and again. However, after months and months of waiting for the results of what it was that I had, I knew what I didn't...Lupus, the word to me, reminded me of the baseball movie Bad News Bears, and a runty kid with a perpetual runny nose... but it was finally something. Until it had a name, how could I begin to fight what it was that conquered my body. Now I knew what it was, it was Lupus. (This was before the days of the internet and webmd) So off to the library, we went my mother and I tried to find any books on the disease. The Sun is My Enemy was the only title available. So we checked it out and read the book and realized the outlook wasn't good.

That was years ago... thanks to the bad doctors (that led me to search out and find) the good doctors, the right drugs and a strong belief that as Shakti Gawain says Everything is Unfolding Perfectly.

Be Well. Be Strong.

-originally posted on Facebook 5/24/09

Thursday
Aug062009

How I became LA Lupus Lady.

Wondering about how I became LA Lupus Lady?
It's a long story but getting diagnosed and living with a chronic illness usually is. I was diagnosed with Lupus at 15 after a long period of not knowing, finally having a disease with a name was a relief. Lupus aka Systemic Lupus Erythematosus or SLE was the name of what was wrecking havoc on my body.

The symptoms were sporadic and strange, I bruised easily and could not sleep through the night. I had night sweats and chills, my joints ached and my skin hurt. that was the just the start of my flare. eventually I was overmedicated by the wrong doctor. Hindsight is 20/20 & I learned the hard way - by suffering the side effects of the medicine I was unable to know what was the Lupus and what was the prescription meant to help. then I found the right doctor! The doctor who would how to talk to me like the young woman I was, one who was full of questions. he answered each one fully and reduced my dosage of meds as safely as he could as quickly as he could.

The first Lupus flare was under control and eventually I was off the medication completely. Living with Lupus is a life knowing more about the science & workings of the immune system than any non-medical professional should. I take each day as it comes. I know what it is like to be too tired to get dressed. I know what it is to be so dehydrated that you need to go to the ER for an IV of fluids. I became a perfect patient. I had an awareness of my body and knew immediately when something was "not right" I credit the disease my Lupus with giving me the gift of heightened awareness. An awareness that has helped me manage to live with Lupus rather than die from it.

years later -and I know I am skipping a lot but this is just getting started.- I became an active member of Lupus LA's Young Professional Group. Through my activities within Lupus LA, I learned about the Lupus Research Institute's Capitol Hill Advocacy Day. I wanted to go lobby members of Congress about funding Lupus Research and educating medical professionals. So I begged my husband to let me use his frequent flyer miles and I booked the trip. Before I headed to Washington though I went to New Jersey to visit my friend and his growing children.

So I travelled all the way to New Jersey to become LA Lupus Lady. My friend's 12 year old son is on YouTube and explained to me in no uncertain terms that I was going to shoot my advocacy day on Capitol Hill and post it online. /but first I needed a name that would capture who I was and what i was going to be on YouTube.

I'm from LA and I have Lupus and I am female, and Lady has a sense of grace to it. LA Lupus Lady was born. I am by no means Steven Spielberg, but I feel that sharing my views of life with Lupus online via YouTube is a powerful tool of representing me as I am, a woman in LA living with Lupus while raising Lupus awareness. www.youtube.com/user/LALupusLady to see my YouTube channel.

More Soon!

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