Kate's Journey with Lupus: slept pretty well

Kate's Journey with Lupus: slept pretty well

Blog Creation Day

Hello world! I am looking forward to meeting fellow lupus folks, some who've been fighting this disease for many years, others just starting the journey. But first, let me introduce myself. My name is Valerie Beasley. I am a 50 year old African American. My life journey has not been an easy one but I remain positive. I've been divorced twice, have two daughters from my first marriage that are now 28 and 30. I have two grand children, a 9 year old granddaughter and a 2 year old grandson Dai'onna and Fabian. They are the light in my life. My daughter, Myeisha and I, Skype almost everyday so that I can keep in touch with Fabian as she and her husband live in Las Vegas. I love Skype.
Today I am embarking on a new Lupus related journey, the creation of this website. I was diagnosed with Lupus (or I think I was) about one year ago. I don't think the doctors are sure of what my illness is, so they categorized it as Lupus. I am now ready to help and get help. Lupus is a stranger in my life. I don't know if symptoms are being caused by Lupus or not. I have a nephrologist, a rheumatologist and a neural surgeon on the job. None have given me a clear diagnosis. My nephrologist thinks it is Lupus even though I don't pass all of the Lupus blood test indicators and put me on Cellcept. My rheumatologist thought it was Lupus and decided to schedule me for doses of Cytoxin every other week (which I declined). However, on the last visit , she says she thinks its Fibromyalgia . So in other words go away (she's not very nice). In the mean time I take 1500 mg of Cellcept, 10 mg of Cozaar, 40 mg of Crestor and one aspirin per day. So folks, I need another source to help me understand this. . Maybe your experiences can help me. Here are my symptoms:

• In April '07, I was leaking 7grams of protein, and when the biopsy came back it showed that I had a disease called Membernous Nephropathy. Only 1 in 10,000 people get it according to the specialists in Las Vegas (where I was living at the time). I was in the hospital for two weeks and was looked over with a fine tooth comb. However they could not find that Lupus was the cause.
• Bouts of pain that radiate over my entire body.
• White spots on my face and body that appear after what I thought was a pimple has gone away.
• Days when I can't get my brain in check. I can't think or speak clearly. My speech is very robotic and I forget the words that I have been using for years. It is quite noticeable to family and friends.
• Abnormally cold even in the summer.
• Nails are brittle on both my hands and feet. The toes are a pale blue at times.
• Digestive system problematic. My breath is a serious problem I think due to upper gi issues
• Nose sores and then pain that starts in one joint and ends up all over my body.

I am kinda embarrassed to talk about these things. When I discuss my systems people think I'm overreacting including the doctors. I have learned to simply talk about the main issues. However, I have all of these things going on with no one to talk to about all of them. I realize some symptoms could be unrelated to the main problem but I would like to be sure.
Calling all Lupus contenders. Please help.
P.S.
This blog is used to talk more about a lifetime battle with Lupus. Please see the following post to get up to speed with my first contact with Lupus.

First Contact - Lupus

  It was a beautiful April day in 2007, Las Vegas.  I got up earlier than usual for work because I wanted some time to go over my summer home landscaping projects.  As I studied the landscape I got a sudden burst of anxiety.  I had been having strange physical symptoms that I blew off.  Heaviness in the legs, dizzy spells, foot and hand cramps, that sort of thing.  But this was different.  It was a strange wave that was quite disturbing.  I decided to get on to work and worry about it later.  I jump in my car, my 1996 Maxima GLE, ”Baby”, and away we went.
  Upon arriving to work; there was that weird sensation again.   I got my coffee and prepared for business as usual.   I was off to what I assumed was an uneventful day.  Shortly after 9:00 I began to have what I now refer to as an ‘episode’.  I was talking to a client on the phone and his voice started fading into the background.  My vision was dimming, my hands were clammy and my arms felt as though they weighed 1000 pounds each.  I could no longer hold my head up and before I knew it I was unconscious.  By 10:00 am I arrived at the UMC hospital emergency room, Las Vegas Nevada. 
Although I was conscious at this point; my reality was more like a nightmare.  I had never experienced anything like this.  I was in a place of controlled chaos to put it mildly.  The waiting room was filled to the limit with patients that were near death or wished they were dead.  I was escorted to a seat for the registration process.   When my daughter arrived she was more insulted by the lack of organization than I was.  She could not believe her eyes.  “Is this an emergency room?” she lamented.  Unfortunately it was.  We were right in the middle of the world of uninsured Americans.  I could not believe this was happening in the 21^st century. 

A patient with cancer that had come from Pahrump, a town a little over an hour away for an MRI.  “I can’t take this anymore.” She screamed.  “I’ve been here for over 5 hours.”   Across the smelly room was another ‘client’ that was there to have dialysis.  She came twice a week (to the emergency room!!!!).   There were patients that were sent over by their physicians because of stomach pains, patients that were severely mentally disturbed and patients that were sent from all over the valley for more extensive tests.  It appeared that the UMC emergency room was a catch- all.  When a Las Vegas doctor doesn’t want to deal with you, they simply send you to UMC.  Sad but true.  I could see I was in for the ride of my life.

Twelve hours later, I was called back to a hospital bed in the hallway.  I was so happy at the prospect of finally seeing a doctor, I didn’t care. 

As I lay there not knowing what in fact was wrong with me for what turned into a two week $37,000 stay, I went over the length and breadth of my short 46 year old pathetic life.  Life’s sentence.