Tuesday, January 8, 2013

I Cant Breathe.....

So simply put I have Pleuritis. For those of you who dont know what that is the same as a regular lupus survivor has swollen hands, limbs and organs. The lining around the lung gets swollen. This causes painful diaphram expansion. For example when you laugh, burp, take deep breathes and even sneeze.
 
What does this mean? For me it makes walking up stairs and just about everything else in life difficult. I am a dancer so people will assume that when I dance and am extremely out of breathe that I am just out of shape but It is equivalent to having a small elephant sitting on your chest in all reality. Sometimes when I have good days I am pretty close to my normal breathing nature. But who has time for normal! Not when you have lupus! Just imagine your normal friday or saturday night out with friends, trying to have a good time laughing your head off and you are stopped from saying a thing due to sharp pains in your chest. Yes that is my reality. But i am optimistic and wont let Lupus steal my breathe away!
Pleuritis Lungs!





Tuesday, November 13, 2012

Greys Anatomy!

Grey's Anatomy single-underhandedly is the best drama series that I have ever watched. I used to hear my mother talk about taping it as I was growing up but I never got the hang of the series. You cant really get into a series right in the middle. But one day there was a Grey's anatomy marathon that started from the first episode and I recorded every episode and got hooked. One in every five episodes makes me teary eyed. I couldn't believe that something could be this good.Now I am a stickler for actors in general because I took acting classes and I am very critical on movies because of the horrible acting. I feel that a series or movies can fail based on either a corny script or untrained actors but this cast from beginning to end had it all there for me and roped me in from the beginning.

How Does Grey's Anatomy Relate to my Lupus Life? While I watch Grey's Anatomy it directly relates to my struggles in the hospital and at the doctors office. It tells tales of many people going through unfortunate events that they cant control and the doctors that are responsible for their lives. It reminds us of how responsible we are for our actions. My lupus life is directly affected by the actions of my doctor. The show kind of shows a bit of light shining through the horrible misfortune events that take place within the series. Sometimes I may feel like lupus is just a series of unfortunate events that keep getting worse and worse but you cry and then move on. There will be another day tomorrow.

Lupus Student!

Being a student with Lupus tends to be difficult. I often miss a chunk load of school due to pain, fatigue and just not feeling well or being in the hospital. Once in high school I had to miss alot of school because right after my sweet sixteen I was sent straight to the hospital to get an infection taken out of my leg. (Lupites have low immune system so they are more prone to getting infections from any little thing, many things can easily make us sick) But I am optimistic, this is one of the very good winters that I am going to school despite the pain and the annoyance :) Stay in school! Be Determined!
 
"The Sole Purpose of human existence is to kindle a light in the darkness of mere being"
-Carl jung

I got that Lupus Kind of Love!

Do Lupites Have to filter their love? Realistically through out my life I have easily met people who would not, could not deal with the fact that I had a chronic illness. Being mindful that of coarse as a teenager growing up I did not just blurt out this information. I am a very private person and I chose specifically who or what I wanted people to know. So finally when I decided to let someone I cared about know that I had a chronic illness it was devastating when they revealed that they did not want to deal with me. For various reasons people would give me the run around and it was either because at a young age young males were not mature enough to handle the emotional stability needed to support someone who had lupus. So that sent me into a very closed tight box where I did not let my hear out. Even those who were not up front at first soon started to float away. Lupites need support and alot of love. Althought I chose even to keep most of my emotions and pain to myself, I always feared that people would reject me and treat me different or even worse with pity! Pity does not pay any of my bills! So i definetly didnt want that!.
What I encourage everyone to know is that not everyone will support you but be thankful for the family and friends who do because they are your back bone. Times may be hard and some people may just not understand the mood swings, being sick all the time or the special attention you may need. But eventually you will find someone special to share these emotions trials and tribulations with. It may seem like a while but that just means that they are getting ready to walk through the door!

Utilizing My Talents!

I am a teaching artist, which means that I teach dance, arts, poetry and step classes to kids and students of all ages. What fuels me to do what I do mostly is that we are not the titles we are given. You can easily chose to be "sick" and embody the characteristics of someone with a chronic illness. But that is not my motive. My motive is to move on my own terms keeping in mind that I am only a part time Lupus patient. I will not take the attitudes , depression and hardships around with me, carrying the weight on my shoulders. I have come to realize through spending time with kids, autistic, emotionall challenged and teenagers that if we can overcome our hardships they can as well and become what they want to be in life. Sometimes my kids drive me crazy and you definetly have to have alot of energy to put up with a room of 40 kids but If we wont overcome our problems what hope is it for them. I get up everyday and may be tired or not feeling well but as soon as I get into the dance room or class room it goes out of my mind. My love of dancing is stronger than the will to be in pain. I have lupus but lupus does not have me! So it better stand on the sidelines because I have things I have to do! wink*

Im So Tired!

Unfortunately one very annoying symptom from having Lupus is that we are always tired. I find that no matter how much sleep I get, I always tend to be tired. I interupts my day and expecially when you have so much that you need to do. As a New Yorker there already is no time in the day as it is. But when you add chronic fatigue to it, It makes a busy schedule and a long to do list even longer. I even was scared because I used to be out late working and dancing and I would be really tired driving home. As the designated driver and the only one with a license, i was responsible for getting people home. If i fell asleep at the wheel what would come of us? The thought definetly shriveled my dreams of staying out too late for a while but we must make sleep a priority and take the right amount of suppliments to nourish these aches. I found out from Dr. Oz that papaya juice increases energy so lets see just how much that works.

Thursday, November 8, 2012

Doctor Apprehensiveness

    "... a needle's pain is only helpful and temporary where as Lupus doesn't help anyone but itself."

     Do you know the feeling you get when you go to the doctor and feel so apprehensive. It doesnt even matter what it is but you dont want to do it. You may not even feel like being bothered. For me going to the doctor is a chore. First you start with getting a referral also known as a permission sleep to see the doctor you need to see. For me I see a primary care doctor, a rheumatologist, dermatologist, pulmonologist and all those fun "ologists". But after you have aquired your referral to go see the doctor that you must see. You then proceed to call your doctors office and wait on the line listening to the millions of horrible tunes on repeat which are a regurgitation of adams family elevator music or even worse "trying to be hip" commercial tunes. 
     Finally! You have gotten through to the secretary, who puts you on hold to the other secretary who may not even know she is working in a doctors office until finally you have made your appointment! Cheers to these ears! Now we are at the doctor. For me I instantly feel uncomfortable although the white and pastel walls often are suppose to give us a false sense of calm and quiet. But sometimes with having a chronic illness if its not one kind of news its something else you may not want to hear. My personal experience with apprehensiveness besides not wanting to hear bad news also correlates with the amounth of blood and urine tests I have to do. I usually get taken 4-9 viles of blood which leave you limp as well as weak and craving fast, greasy food.
      My apprehensiveness for bad news controls my psychi sometimes. It can be a traumatic experience, one that I have had to journalize on many occation but I believe it can definetly mess with someones inner being and willingness to accept optimism. Where as some people have a fear of needles (which I dont) I say bring it on! There really isnt anything worse these needles can do to me. On the other hand a needle's pain is only helpful and temporary where as Lupus doesn't help anyone but itself. I always pick myself up after these doctors visits with talking to a friend on the "butter to my rice" My mom...who then takes me shopping :)

Thursday, October 11, 2012

MY! Symptoms Of Lupus


What are the Common Symptoms of Lupus?
Here are a list of common symptoms that are associated with lupus. Hair Loss ,Depression ,Lupus Rash (resemblance to a butterfly) ,Sensitive to UV Light ,Difficulty getting pregnant.
,Kidney Problems ,Heart Problems ,Inflammation of the sac around the heart ( Pain In the left side of the chest),Headaches ,Mild Memory Loss ,Seizure / Stroke ,Swollen Glands, Lymphnodes
,Belly Pain (Caused by lupus or by medicine) ,Vomitting ,Difficulty swallowing ,Coronary artery disease ,Heart valve disease
,Pluritus: Tissue around the lungs becomes inflammed.,Inflammer chest muscle or Rib joint ,Anemie: Body has too few blood cells and the body can not make enough. Or the red blood cells are being destroyed more quickly. ,Fatigue ,Shortness of breath.

Brand New Start


What Is Lupus?Lupus is an Auto Immune disease, when the immune system attacks its tissues causing inflammation swelling, pain & damage. Due to the production of auto antibodies. It is a life long disorder of the immune system. Immune cells attack the bodies healthy tissues leading to inflamation & tissue damage. It also causes damage to the heart and vital organs. 
Why did you start this blog?
My original idea to start this blog emerged in my e-commerce class. But then a light bulb went off that I could use this to my advantage and power something I believe in. This blog is to help the lupus supporter and survivor and to provide helpful links. Along the lines of my lupus fight I found myself hard pressed to find resourceful links and information to guide me to help and to know that I am not alone. I had to do a lot of my own research and I wanted to make it easier for those with lupus to have access to other stories as well as helpful links to nyc foundations and events. Unfortunately there are many organizations who do different things but it makes no sense that we are not all together because "Aren't we all in a fight with a common enemy? " I utilize all of my resources and participate in all of the events I can as well as whatever interests me. Hopefully you will participate in this blog!

Tuesday, October 9, 2012

Queen TuT's Lupus Awareness Commercial

Queen TuT's Premier Lupus Awareness Commercial

After being placed in the hospital for around two weeks with lung failure, water in the lungs and pneumonia. I was in an extreme amount of pain. All I could do while I was in the hospital was think about all the things that I wanted to do when I got out. I though about all of the plans I made that this had interrupted. Unfortunately your body reawakens you from life's everyday worries and troubles. If you don't have another day to live there is no use making plans. It made me realize that I should do more things for my heart. So I gathered some talented individuals and put together my first Lupus awareness info-mercial to educate viewers and raise money for the first Lupus walk that I participated in. I raise over $700 and this was my creative symphony in video form. 

My heart went into this video to show that sometimes a lot of unfortunate events may happen. At times we try to run away from them or deny them. But when backed into a corner there is nothing else to do but fight. We should fight long, fight hard and persevere. In this video and in my life I'm not only fighting for a cure, Im fighting for the right the ability the life that I live. More importantly my family, friends and my passion need me to push on more than this illness deserves to eat my spirit and my body alive. Every struggle has a voice and every struggle has a purpose. 
-Paige "Queen TuT" Stewart