Lupus you STROKED my last nerve!!!!

Well guys....I was in the hospital again.  I had 5 mini strokes (TIA's). This time it was SCARY!!!! Damn you protein S deficiency!!!( that is a deficiency in the blood clotting factor which increases the chance for clots

So I woke up in the middle of the night and I couldn't move my arm.  It felt as if it fell asleep. I ignored it. I woke up to go to the bathroom at 3:30 in the morning, I couldn't consciously move the left side of my body.  I moved the strong side of my body and sat up. I had the textbook sign of the drooping lip which made me not able to talk.  I yelled out (I sounded like a hippo in heat).  The first person to come to my rescue was my youngest daughter.  She came in my room and said "Mommy what's the matter? Whats wrong with your mouth?" I couldn't talk.  I just started to cry, my daughter started to cry.  Then she said "Mommy whats the number to the hospital?" (I told my daughter to call 911 if ever mommy wasn't feeling well, I guess she was too excited).  I couldn't even tell her to dial 911 because I could'nt talk.  My mother came downstairs and started to hug me and cry.  I was trying to say "Ma, I was having a darn stroke!!!" I think I was the only one who was not excited and I was having the darn stroke!!!

When the ambulance finally arrived, I was so out of it.  I felt weird in so many dimensions.  At the hospital they took me right in.  The shoved an IV in my vein, strapped an EKG on my chest and bombarded me with questions.  I have an extensive health history so it takes a while to write everything down. When I was on my way to get another cat scan, I had another TIA.  It was so embarrassing! (The doctor was hot!).  I went back to the ER and had 3 more TIA's.  They infused me with heparin which is a blood thinner that is usually used when someone has a stroke.  I hate it.  You bleed, bruise easily, and every little cut bleeds profusely.  When the neurology team came to see me, the head MD said "Well you are a great candidate for the stroke unit".....Ha ha...not funny.

When I was in the hospital room I was the youngest patient in the unit.  These people were very sick.  I didn't have any strokes but I did have a panic attack which at first the doctors thought was a seizure. Its weird because I was talking to someone and explaining my arrangements for going home.  I said to her"I feel funny" and then I was just unable to move or talk. I was put on a EEG monitor (which messed up my weave) and they found out I had no seizure activity but they did inject me with some ativan! Wooooo doggy!! Now I know why psych patients get injected with it when they start to become aggressive.  It calmed me down so much.

The hospital stay was pretty pleasant.  Except, my IV was not changed after 3 days which is supposed to happen.  I has a huge scar that shows the fascia of my arm ( I have a pic).

I had a lot of support and I needed it.  My kids called me everyday.  Visitors came *Special shout out to My mother, father, grandmother, aunt, Brian, Ugo, Tahana, and my lovie Liesel who almost caused me to have another stroke because she made me laugh.*

I cried. I balled.  I was frustrated. I was angry. I was sad. I was depressed.  I felt like I'm missing out on life and the joys of having a" normality".  But I always said to myself the things that I look forward to: My kids, my future and my will to survive!!! Whatever doesn't kill you makes you stronger.  Let me tell you I surely has.

If you or anyone that you know has had a stroke caused by lupus or a stroke in general, please feel free to share your experience.  I'm putting up embarrassing pics so don't worry you are not alone!!!

Love ya!!!
TheRealLupus@gmail.com

P.S. My birthday was September 19th.  I am 27 going on 18 woooo whoooo!!!

LUPUS + Me = BEAUTY

A friend of mine, who has Lupus, just cut her hair.  I didn't want ask if it was because of the Lupus but most likely it was. Sometimes Lupus can cause your hair to fall out.  A couple of years ago, I had to shave my hair down to a light Cesar.  I was embarrassed, ashamed, I felt as if my womanhood was completely gone.  I cried and boy did I cry.  Just to see clumps of my hair falling out into my hands and on to the shower floor.  I wore wigs, scarves, and...(wow Lupus fog), and other hair paraphernalia.  Anyways,after a while I learned the true meaning of beauty.  My boyfriend at the time helped me through my inner battle and I gained a little confidence.  But most importantly, I had to find my confidence in myself.  It took a while, but I walked around with my short hair with no problem. I learned how to love me and my disease.

Lupus has a habit of bringing people down.  There are so many crippling things that makes us lupies self conscious about ourselves and feel "different" or "abnormal." That's bull! For 3 years I walked around like a penguin because of my avascular necrosis of my hip.  I had rashes develop on my skin.  I had weight fluctuations due to my beautiful nightmare drug prednisone.  I didn't care.  People would always ask me "Kenya, you have all this stuff going on.  How do you stay so confident and positive?" I am strong. We are strong.  We have an illness and we fight through it!  I tell myself everyday that I am beautiful and this disease will NOT bring me down.

If you have any self conscious issues and would like to discuss them, please feel free to comment.

If you are interested in an online Lupus magazine please visit http://www.thelupusmagazine.com/.  They will give advice on different types of issues involving lupus.

U.N. Auto immune summit

Interested in knowing about your autoimmunity or want to give your two cents.  Join the U.N. Auto immune summit taking place on September 24, 2010.  Here's the link to register.  It's FREEEEEE!!!!  Hope to see you there!!!

http://unitednationsautoimmunitymeeting.eventbrite.com/

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