Going natural!!!!

Wow I really need to start blogging more often.  My last post was in march!!!!

SOOOOO!!!! I was so inspired in May. Ok, so, ahem, hack, cough, spit, ok. So An email was sent to me from Miss Jessie's about "The Big Chop" That was sponsored by "Curly girl collective" (which are a group of bautiful sistah's that are natural) which basically chopping off your permed hair and just going natural. The prize was to get your hair done from Miko and TiTi, the founders of Miss Jessie.  I always apply for things like that (I won tix to fashion week by doing that) and I told them my struggle with lupus and my hair.  That same evening I received an email saying that they have chose me to be one of the candidates.  OOOOOOMMMMMGGGGG!!!!!! I was jumping up and down....and then I stopped because my bad hip told me to. A free hair do from Miss Jessie!!!!!!! This was awsome.

This was me before no perm since 10/10

I have been going natural since October 2010 and since then I have been wearing wigs and weaves.  My hair was growing but I was so afraid to show my hair and I didn't know what the hell to do with it.  I joined a google natural hair group and I found out loads of information.  So I was investigating and got some ideas from facebook.  Miss Jessie was one of them.

This me with Melody at the Cutly girl collective event

This is me promoting Curly girl collective

Anyways, So I got a complimentary hair doo and I felt so good! I was soooo happy.  I so needed this after all the BS I was going through. So I took Pics before and after.  It was a great experience.

Many people with lupus struggle with their hair.  I used to always perm my hair and I felt those chemicals run through my body and even made me feel sick.  My joints started hurting and I just felt an overall weirdness.  It left puss filled scabs on my scalp.  Finally I was fed up and I just stopped perming my hair.  It is OK to cut all of your hair off.  I cut my hair down to a ceaser.  Of course I didnt take any pictures at the time because I felt self concious, but now I would have taken those photo's in a heartbeat!

Us Lupies can have so many issues with our hair.  We bald, we thin out, we develop bald patches, but you know what, your hair is an accessory.  It does not define who you really are.  Love the necessities like your health rather than you hair.  Everybody can't have thousand dollar weaves like beyonce and Ri Ri but we can take pride in who we are we are LUPUS AVENGERS!!!! We are strong  We are fighters.  We must love the lupie within!

This is me now!

WALK FOR LUPUS NOW 2011

Hey dudes and dudettes....sorry I was watching ninja turtles. Did anyone walk for the "walking for a cure for lupus!" YIPPPPEEEEE!!! I did! Ouch my arthritic knee! ok......yipppppppeeee!!!! 

If you have any experiences from the walk that you would like to share please feel free to email me at TheRealLupus@gmail.com

Me and i randomly ran into my poetic friend ron de vu

Love you guys!!!

LOVE and LUPUS

Wow! It's been such a long time since I wrote on this Blog.  My best friend Liesel was yelling at me for not keeping up with this blog.  Well not a lot has happened since the last time, except..........I HAVE A BOY FRIEND!!!!!! Yes and we have been going strong for going on six month's! woo whoooo!

Do you want me to tell you the details...No? Well your going to listen anyways.  We went to high school together.  So we reconnected through facebook and I got his BBM ( Blackberry stuff) so we chatted a little bit and he posted as his bbm status that he's going to a bbq.  I replied "I'M COMING!!!" (That's just me I just bull doze my way into things sometimes, I blame the prednisone).  So we met up again and I found out he was a great guy and he is still a great guy!....He's my shmookumsborg I am his pookietron...sigh....ahem

One thing that really impressed me was that he was interested in me even when I told him I had Lupus, my face looked like it was about to explode because of the prednisone, I was as big as jabba the hut and I was wobbling like a one legged pirate.  Who would want me I thought.  Well he did.  He was there for me during my hip surgery and helped me so much after with the healing process.  He was there for me even when I was in the hospital after I had the stroke (he snuck in swiss rolls ssshhhhhh).  Looking all crazy!!!! At that time we weren't in a relationship!

I never thought that I would have a boyfriend who would understand me as much and would actually want to be with me for a long time.  I have issues, my health is one of the main issues.  Sometimes I felt in the past that I was not worthy of having a good boyfriend because of all the physical things that were going on.  I was fat and wobbly.  Yuck! who would want to be my boyfriend.  So I found other means for security...don't want to go into details about that.  It was only the beginning of last year when I started to feel my worth.  That I was confident in myself and my illness and everything that comes along with it.

Some people, especially women, have low self esteem because of the side effects of Lupus.  I know a lot of women who are depressed.  Girl, SNAP OUT OF THAT!!!! You have to enjoy every last breath of life that you have and be grateful that you are here on earth!!! Don't ever feel you are less beautiful because you face is round, Find a hairstyle that fits your face.  You stomach is getting big, wear clothes that compliment your size. 

One thing I learned is that men love confident women.  I told every guy I dated up front that I have Lupus. Some knew what it was and some didn't.  I just explained what it is.  You don't want to deal get the hell out of my life! I have enough stress. 

Another thing that is important in relationships is.....SEX!!!! Yes the forbidden tango.  Now the main concern for Lupus avengers are immunosupressive drugs and STD's.  Ladies, you are more prone to infection if you don't wear protection.  You will catch every and anything on these drugs, prednisone, myfortic, cellcept, and a whole load of other drugs.  Please wear a condom! Go get tested and cut down on multiple partners.  I think you should only have one but we are all human.  Sometimes it doesn't work out like that.

Pregnancy.  Being pregnant puts a lot of stress on your body.  That's when most of the diseases come out.  Not only is it stressful on your body but also on your psyche.  You have this Lupus disease that you have to worry about to stay alive and then you have to worry about the health of your baby.  My oldest daughter has heart block and requires a pacemaker for the rest of her life.  I would suggest having a planned pregnancy so all the requirements as far as nutrition, medication, and planning about the future with your baby. Although 98% of us are mistakes.

I hope you find someone you love.  Here are some tips for women if you have lupus or if you don't:

- Don't stay with a man who brings you down because of your illness or any side effects connected to your disease or medicines. Kick his butt to the curb and I'll help you do it!

- Don't feel less confident in yourself.  Men love a woman who takes care of herself and believes in herself

- If he isn't doing anything for himself don't do it for him.  This can cause you to be stressed out over his mess.  If he doesn't get his act together I suggest you leave.

-Make sure they understand the pros and cons  of your illness.  Tell him you might be in the hospital or may be too tired or weak to do certain activities.

-WEAR PROTECTION!!!! please get tested, wear a condom, or abstinence......emmmm yeah that works for some.

-Don't blame everything on your disease.  Get out sometimes.  Enjoy a short walk in the park.  Go out to a play do something to get you active so when the times get rough he knows and remembers the good times your guys shared.

- Don't expect a guy in shinning armor.  Most of the great guys don't look like Brad pit, have a body like a NFL player, and have money like a movie star.  Just make sure you are comfortable with the person and not stressed out over nonsense. (baby momma, losing the job all the time, wants to be a rapper, speaking from experience)

I hope this helps you out a little bit in your love life.  I have always be reached at thereallupus@gmail.com.  Love you people!!!!

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