Having to deal with lupus requires lost of patience and you must love yourself first before you give so much of yourself to others. Honestly, I do get frustrated, for example I've been doing well with my diet and taking care of myself but unfortunetly I am dealing with this sinus infection that won't go away. I hope and pray eventually it will go away, but right now I'm taking it one day at a time. I wanted to share the latest dish I made on Sunday, it was salmon with a little bit of string beans, I do enjoy cooking. I had fun seasoning my salmon, not using too much sea salt, just a pinch but I did use fresh garlic.

Beef stew with okra, onions and bell peppers with side of white rice


Breakfast burrito I made with scrambled eggs, almond cheese, onions, bell peppers, turkey meat, cilantro, also added Tobasco sauce to give it a kick :) I made two of those since one wasn't enough


My Latest Thought...
Yesterday lupus paid me a visit
Gave me enough time to gather my thoughts on sheets of paper
An unmade bed stares right back at me
I want to be remembered as the dreamer
Who saw beyond the train tracks of Brooklyn
Who didn’t mind coloring her life dramatically
Who convinced the world that it’s far more
Fascinating to taste with our eyes
Poetry is our heartbeat
The birth of words gives us reason to scream insanity
Lupus reminded me to log down the precious moments
Before they fade away use my brushes as weapons
Use poetry to sooth the soul
Don’t ever take life for granted
(c)2010 by Delaleu

Lately, I've been cooking a lot...can you believe they opened a Gluten Free store. I was amazed at the amount of food they have there including pizza crusts. I eat Quinoa pasta since i'm not able to eat any wheat or dairy...and I use lots of cilantro and gluten-free tomatoe sauce with garlic for flavor. Yummy!!!

LESSON LEARNED


The power of writing has many consequences. It can reveal,inspire, destroy, elevate and sometimes it can be hurtful or brutal. Like some who consider suicide and leave their mark with an emotional letter, letting their loved ones know what caused them to end their life. I feel when you have that kind of gift to move people, it means all is not lost. God granted you these lovely hands and fingers for a reason.

The many challenges I had to face these past few months took a toll on my body. Yes, I did consider not to write in my blog and even allowed Mr. Writer's Block to take over. What made it worse is the ugly monster, I should say "my ugly demon" Lupus SLE (www.Lupus.org), came out of hiding again.

A year ago 2008, my life completely changed when Lupus paid me a nasty visit leaving me disfigured and I lost all the self-confidence I had in me. I was doing good in NY with a great job, my own apartment and many friends. But, sometimes you get a wake-up call...so I was unrecognizable physically and mentally, forget about emotionally. I felt not even a therapist can fully understand this illness.

I was diagnosed in 2007 and it's been a battle ever since. Yet, I'm blessed to wake up everyday with family and friends who show support. To understand this auto-immune disease, one must be very patient and non-judgemental. For example, people will look at you and think, "She's pretty,well, she don't act or look sick". Then, 3 months later, you're swollen all over, can't barely get out of bed and depression sets in. Your mind plays tricks on you, makes you believe no one gives a damn and you might as well die in your sleep.

Lupus SLE is not an easy illness to deal with cause in order to fight it, you must be mentally strong to do so and make yourself a list on how to be ahead of it. Lupus loves stress and depression, actually most Lupus sufferers are affected with joint issues due to stress. Also, Lupus loves it when you eat the wrong type of food, dairy and wheat will eventually send a Lupus SLE candidate to the hospital. I've been there more than once. Also, it does not tolerate excessive sun or cold winters. I live in 100 degrees AZ heat and i'm still struggling, but not as bad as when I lived in NY.

I was very hurt when a blogger friend told me of Nikki's passing. It's sad to hear such news, especially knowing she was so young. I'm sure sure Nikki wouldn't want us to dwell on her loss or illness. She was a great blogger, writer, feisty with her words. She would want us to remember her wonderful writing and beautiful personality. The more we do, the most we celebrate her life and her light will continue to shine. You can show your love by stopping by her blog (http://iniquitous1.blogspot.com), i'm sure her family would appreciate it. As for me, i'm taking it one day at a time with much prayer and meditation. I've learned a big lesson, this illness never goes away, it's more like a submarine, it appears whenever it feels like it and can take command if you allow it.

YOU MUST BE YOUR OWN DOCTOR

I have much to tell about Lupus. I was diagnosed in May 2007 after many trips to various doctors, it's really a disease that hides itself in a corner and you're the one who must try to bring it out and take care of it. I baby my body and soul every day by taking care of ME. I DON'T wait for doctors to do the job, most physicians are out there to make money for their mortgage and new cars, not caring for their patients. I learned that the hard way.

When I was diagnosed with lupus, I wasn't pleased with the results and felt very discouraged. Will I be popping all these chemical pills for the rest of my life?

Thank God I was raised by a mother who only believes in natural medicine. We didn't eat McDonald's in the house, no fast food or junk food as treats, instead we had a juicer and constantly ate veggies...for most teenagers it sounds disgusting to consume such healthy drinks or food. But, believe me the end result is worth it. I will give you my secret with how I've dealt with Lupus and how i'm dealing with it now.

First, I must tell you how bad it was. I was still going from one doctor to another, having to deal with so much pain with my knees and now my feet were too swollen to wear my shoes so I was wearing bigger size shoes. I was limping everywhere, so I stopped going out with friends, I stayed home, kept myself busy with painting and writing, eventually that had to stop cause my hands got too swollen and I couldn't sit for too long. Depression started to crawl, I stayed most of my days on the couch watching TV. April 2008 was the second time I filed for medical leave at work and that was the last time I sat behind a desk.

What did I do at home during the day? I went to more doctor appointments, they were finding out that I had too much protein in my urine and my kidneys were acting up, why? I was on and off of Prednisone (steroids), no good for the kidneys yet the doctors prescribe it for the inflammation of your joints.

See, don't allow the doctors to investigate your health, first off THEY DON'T HAVE THE TIME to do it, they have way too many patients and so little time. It's easier for them to write you prescriptions here and there and send you home to suffer the symptoms. New symptoms arise when you consume too much of the chemical pills such as Prednisone, Cellcept (Myfortic), Plaquenil.

The reason why my Lupus showed up the way it did is because at 19 years old I had my spleen taken out, had ITP, discovered that my spleen was eating up my red blood cells and the doctors back then told my mom that later on in life I might developed Lupus. Mom and I had no idea what Lupus was, so we didn't bother to take care of it, plus back then I felt fine. The signs started in my 30's, 2 years ago with my knees.

Mom started mailing me some natural meds to take while I was on Prednisone and Plaquenil, I wasn't strict with my body, I kept eating food that were healthy but not healthy enough to fight the disease. For example, I kept eating food made with wheat, wheat bread or pasta, wheat bagels, cookies with wheat. Most food out there are made with wheat, in my mind I thought I was doing a good job, yet it was the opposite.

2007...the month was January, it felt like the coldest and most depressing month for me in New York. I woke up with both knees swollen and achy. At first I thought it was because of my running on the treadmill 3 times a week at the gym, so I went to the medical department at work and they did X-rays which showed nothing serious. The doctor suggested physical therapy and gave me some Flexiril (muscle relaxant). When I started with physical therapy, my knees were getting worse and looked like sausages, I was now starting to limp and wearing flats all the time instead of my cute shoes or boots. Even inside the job, I couldn't wear nothing pointing or with heels. I felt like an old woman deteriorating. Something didn't feel right, yet I continued with the physical therapy twice a week and they used heating pads for my swollen knee caps.

I started feeling tired and out of it, I was constantly out of breath. I kept going to different doctors and find out that my blood pressure was high and my joints were abnormally stiff and swollen.

I was told of possible arthritis and given various meds for blood pressure and for the joints.

Back in April 2007, my general practitioner suggested that I see a rheumotologist to check on possible lupus or arthritis.

At first, I was skeptical, I've never heard of the word "rheumotology" before. I was willing to give it a try, my symptoms were getting worse.

I didn't feel comfortable with this rheumotologist, she seemed cold and distant which is why I didn't go back to her to check on my blood work, instead I continued to suffer with the joint pains on my fingers and knees, then decided to call my Aetna insurance to be referred to a different rheumotologist. I found one in Manhattan, yet I felt like a guinea pig, she kept giving me more Prednisone and Plaquenil, kept telling me things will get better yet I didn't feel so hopeful.