Oh drizzle!!! I have protein in my pizzle!!!

I have a confession to make...I am a non compliant patient.  #dontjudgeme.  A non compliant patient is a doctors worst nightmare.  This type of person is always in the hospital (me).  Never takes their medicine (me).  Always misses doctor's appointments (guilty as charged).  Well before mysurgery, I had a rheumetology appointment ( I actually went).The lab checked my protein levels.  It was 3g!!!!  My average is 1.6-2.3g (which is still high But because this is my norm they are looking for stability not progression) so this alarmed me and my doctor.  My doctor scolds me all the time but this time she just looked at me with a big SMH!!! ( I love my doctor by the way).  After that visit I promised to take my meds and ever since I've been taking them consistently....sort of. Ok.  I missed my nephrology appointment but I really was not feeling well enough to go. (seriously).

I've had a kidney biopsy and I found out that I have stage 3 kidney failure.  Below shows the five stages of CKD (chronic kidney disease) and GFR (glomerular filtration rate.  That is the amount of wastes that are excreted out your body) for each stage:


•Stage 1 with normal or high GFR (GFR > 90 ml/min)

•Stage 2 Mild CKD (GFR = 60-89 ml/min)

•Stage 3 Moderate CKD (GFR = 30-59 ml/min)

•Stage 4 Severe CKD (GFR = 15-29 ml/min)

•Stage 5 End Stage CKD (GFR <15 ml/min)5 means dialysis.  You can check out your stages at http://www.davita.com/gfr-calculator/#app=266&ae93-selectedIndex=1.  You need to know your creatine levels. NOTE: You should ALWAYS be aware of what's going on in your body!!!! Ask you doctors to print out lab values ask questions.  You are your own advocate!!!!

Protein in the urine is a sign of kidney damage.  Proteins are big molecules that should not me excreted by the kidneys.   When they are excreted it is because your kidney's structure is either dying allowing these large molecules to escape or so much inflammation is going on that it causes the membranes to become impermeable (easily bendable) therefore allowing big 'ol proteins to escape.....I'm a nursing student, sorry if I sound too technical.

Don't sweat it! stay positive and don't stress yourself.  Stress=more complications.

If you want to share your story about how you are dealing with you kidney's let me know. 

As always I have an open heart, mind, and arms...

Kenya Lonesome
TheRealLupus@gmail.com

OOOHHHHH GEEEZZZ I HAVE THE ZZZZZZ'S

Well yesterday 8/28/10 I wet to a Mets vs. Astro's game.  I sprayed on my sunscreen, brought my water, and didnt wear a hat (slap on the wrist for that).  I was with my kids and 2 friends.  We took the train all the way to Citi Field in Queens (Im from the Bronx) Boy oh boy was that train ride hectic.  The NYC rushing around, the hustle and bustle of where to go, the kids repetitive song "Is this the stop? Is this the stop?" Geez Louis.  I was so happy when I finally sat down to see the game.  I took a picture with Mr. Met ( I am going to post a picture).  Then the dreaded words invaded my ear "Mommy I have to go to the bathroom" Arrrggghhhhhh!!!! I was so sore from walking around in the subway.  My new hip was saying "easy partner" and my decaying hip was saying "Are you nuts?" But my kids had to go to the Bathroom.  When the bathroom adventure ended it was a pretty good game.  The Astro's won (Boooooo, I am a yankees fan).  In the 8th inning the score was 4-2.  We decided to leave and I dreaded to ride back home.  I was exhausted and I hardly got up!!! The train ride was long but luckily I had supportive friends who knew I am slow when I walk and helped me with the kiddles.  I was too pooped to cook so I brought some KFC (Hey, I hate it but you have to love it) and I went to bed. 

Lupus causes tiredness,fatigue, lethergy, and absolute I don't feel like doing anything.  Some people call us Lupus Liver's" Lazy or say "why are you so slow? " What really hurts is whe my kids ask me why I am tired all the time.  I tell them "mommy's lupus makes her sleepy sometimes." Luckily the love's of my life understand that when mommy is tired shes getting ready to take a nap.  This tiredness may cause depression, feelings of hopelessness, you don't have energy to do chores, or your so tired you just don't feel like getting out the bed. 

Here's what I do when this cloud of fatigue showers on my life:

• I stretch evrytime I get a chance
• Before I get out the bed I say to myself "Kenya, there are things to do in this world.  The world needs you" (I'm not crazy, lmao, its pep talk)
• I take my time.  Rushing may cause stress.
• I don't eat a heavy meal.  I try to eat fruits or cereal in the morning and during the day and then I eat a heavy meal at night.  (Even though I don't usually do...ahem) 
• Open my blinds and expose light.  Light will brighten your day. But don't stay out in the sun too long or wear your SUNBLOCK!!!
• I inhale a deep breath and exhale slowly throughout the day.
• The most important thing that kills my fatigue is positive thinking.  I wake up.  I don't think about all the streesing things that I have to do.  I keep and hour of Kenya time and reflecting on everything to be grateful for. 

This is my personal routine.  Everybody is different.  But keeping a positive mind is so imperative with this disease.  With all the things that happen to us Lupus liver's, this disease can easily bring us down.

I am thinking of taking Bikhram yoga!!!! Yippee....

If you know of any ways to fight fatigue please comment.  I would love to hear it!!!

For other sources you can go to LUPUS.ORG

Greetings!

Hello my fellow Lupus livers!!!  I am so happy to be starting this blog.  First let me introduce myself.  My name is Kenya Lonesome.  I am a 26 year old female and I have Lupus.  I was diagnosed in 2001 when my daughter was diagnosed with third degree congenital heart block inutero.  It was a very trying time for me because I was a young mother (19) and I had no idea what the hell Lupus was.  There were a lot of ups and downs with my daughter but she made it and now has a pacemaker but is a healthy 8 year old child!!! I felt strong!!!

In 2004, after I had my second daughter, My health went down hill. I lost 90 pounds.  I couldn't breastfeed as long as I wanted because I was so weak and in so much pain.  I was put on high dose prednisone (our miracle but destructive drug).  Of course I gained weight (160 lbs...and I'm 5'4 ugh).  I felt stupendous.  I was weened off the prednisone.  During this time I was in school, taking care of my kids, working, and dealing with my illness.  Guess what this is...STRESSSSSSSS. Our worst enemy!!! In 2007 I suffered a stroke that affected my speech. The stroke was caused by a clot that was on my heart valve due to endocarditis and a protein S deficiency. It was SCARY.  Fortunately I recovered but had mini strokes called TIA's. 

This was a major event, besides the birth's of my children, that happened in my life.  After that many health problems surfaced.  High blood pressure, stage 5 kidney failure, pleuritis, thrombocytopenia (low platelets), avascular necrosis of the hip (due to the high dose steroids), a hip replacement (due to the avascular necrosis), shingles, hair loss, joint pain, depression, tiredness, lupus fog (when you forget or can't come up with words right away), and most important dealing with Lupus.

So This blog is my experiences day to day with Lupus.  I would love to hear what other people are dealing with.  Anything from relationships, to family, to school, to you just want to rant!  I am and the world is here for ya!

*smooches* xoxoxo
Kenya Lonesome