Lupus Awareness Month

"Dear Lupus"

You came uninvited like the thief you are. You invaded my body and my life silently and you have no mercy. You have stolen my health and my vision of myself. You tear at my relationship with relentless teeth rending and damaging wherever and whenever you can. However, you forgot when you planned your war. I am more than what you make me out to be. I am more than mood swings. Relationships worth having heal and stand steady under attack. I continue to rise again and again to reinvent myself and most important there is a part of me you can never touch. My soul. I am a child of God and you can never take from me what I won’t give. Lupus slows me down but it isn’t stopping me. I am a lupus warrior and I will win this fight. - Cherish, Diagnosed at the age of 4. 



"Why Millennials Should Care About The Affordable Care Act"

I was 18 and thought I was invincible, until I wasn’t.

I was like any other healthy 18-year-old. I had never broken a bone, never been to the doctors — except for the usual six month checkup. I had never been on any type of medication except to curve an occasional strep throat.

That all changed when I was diagnosed with systemic lupus erythematosusMy life became a whirlwind of doctors and medications — until I found the right fit.

Suddenly, I had to think twice about my health and what my diagnosis meant for my future. The “nothing could touch me or hurt me” attitude was gone.

The Affordable Care Act, signed into law in 2010, 4 years before my diagnosis, stated that a child could be kept under or added onto their parents’ insurance until the age of 26. A provision, that I never thought would affect me.

But it has, because at the age of 21, I don’t have to worry about getting kicked off of my parents’ insurance and killing myself to pay for my monthly visits and treatments, not to mention the five medications I take.

I also don’t have to worry about being kicked off because I’m sick and eventually when I go on my own insurance, I won’t have to worry whether or not they will cover me.

These are some of the Affordable Care Act’s provisions that affect millennials:

  1.  A child can be kept under their parents’ insurance until the age of 26.

  2.  An insurance company cannot refuse coverage to anyone with a pre-existing condition.

  3.  If anyone gets sick, the insurance company cannot drop them from the plan or limit the insurance used.

  4.  Requires that insurance companys’ cover mental health and substance abuse services.

  5.  Everyone must pay for insurance or risk a tax penalty, unless you qualify for exemptions i.e. you’re still in school and don’t meet the minimum income requirements.

So why am I telling you this? One out of six young adults have a chronic illness and 75 percent of mental health conditions develop by age 24. News flash — you’re not invincible.

Oh and the average cost of an uninsured emergency room visit is $1,233, in case you’re going along with the biggest argument of The Affordable Care Act, which is why make people pay for insurance.

I’m pretty sure you don’t have $1,000 dollars lying around.

Doctor visits were my only outing for weeks. The white walled examination rooms and my usual seat on the black examination tables were where I was asked a million questions on how I felt on my medication and my doctors; a rheumatologist, dermatologist, and nephrologist to be exact, always with serious, solemn faces, would ask me to try different combinations and doses — to see which one was going to work best. A relief after being poked and prodded for monthly blood tests A high dosage of steroids here, a cream for various rashes there, and let’s introduce one more thing because well you need it and your insurance covers it.

After yet another doctor’s appointment.

This was probably the only reason I had the privilege of being able to experiment with different types of medication and visit all of the doctors that would contribute to me finally being able to get my lupus under control.

According to my rough calculations, as of right now my medication and doctor visits cost $340 a year with insurance. Each of my medications cost $5 and since I take 5 different ones, this totals $25 a month. So roughly that is $300 a year. My copays at my doctor visits are $5 and since I’m doing better health wise, I only see my doctors a couple times a year, totaling $40. This is also including my dentist and primary doctor.

Keep in mind this isn’t even counting random visits for things that I don’t plan on coming up.

According to www.drugs.com, my medications without insurance would total $524 a month and $6,288 a year. One doctor visit alone without insurance can cost over $200. A treatment called Benlysta that I receive monthly with no cost because of my insurance, cost $35,000 a year. This treatment is something patients suffering with lupus sometimes opt out of because of the cost. This treatment has caused me to see a tremendous change in my health and has made all the difference in me managing my symptoms.

Would you want to face the choice of opting out of a treatment because you can’t afford it due to lack of insurance? A treatment that could potentially be the difference between your improved health or no improvement at all?

Most young adults wait until the last minute to sign up for health insurance if they’re not covered under their parents’ plan. If you’re wondering what the deadline was it was January 31st, 2017. You may be eligible to still enroll if you fit the criteria for an exception.

I was perfectly healthy, until I wasn’t. I wasn’t worried about my health plan because I didn’t plan on getting sick, just like people don’t plan on getting hurt. It happens. I challenge you not to think you’re invincible and wait until something bad happens. Find out if you’re covered under your parents’ insurance or what your other options are.

Think of your future — today. - Nikki Santiago (Visit and read more of here posts here)


"You cared. You asked if I was ok."


"8 months ago my life changed after finding out that my lupus was once again active and as a result, I also had kidney disease again. I made the choice to be very open and honest in real life and also on social media. This is always risky, but since lupus is one of those “invisible illnesses” and is often misunderstood or not believed, I felt I needed to be open to help others understand this is real, and also to help those who may be suffering, but are afraid to speak up.

I’ve documented my progress-the good and the bad. It was hard for me to open up because I’m usually pretty private. I was concerned how this would be looked at by others. Would they think I was weak or would they think I was complaining? Would they just not care? But more than anything, I needed to write about it for myself.

So I shared my story. And to my surprise-you (or some of you) followed me along. You cared. You asked if I was ok. You asked if there was anything you could do to help me. You dropped off books, food, presents, and sent flowers, gifts, and cards. And you even helped me financially when I was out of work for a while. And most importantly, you didn’t give up on me. And so far, you haven’t gotten bored with my story and you want to know the updates.

I don’t think there are enough words in the dictionary to explain how completely grateful I am for this tremendous outpouring of love. It has been so unexpected. Some of you I don’t know well and even a few I don’t know at all, but you still wished me well and let me know you were thinking of me. The kindness I have been shown has been exactly what I needed, especially on some of the harder days. And it has been a huge motivator in helping me push through this journey. That just proves that kindness can make such a positive difference in another persons life. So from the bottom of my heart-THANK YOU! I promise you that I will pay it forward in any way that I can." - Jane (Visit and read more of her posts here)


 

 "You don't know how strong you are until being
strong is the only choice you have."


"My name is Daniela, I'm 25 years old and I was diagnosed with lupus since 2008. One of the things that most patients do when we feel better is say that we don't have anything. And one of the biggest errors I made was to not take my pills during one month. This mistake for me was the biggest thing to do, because due to that,  I had struggles with my health. Since that incident, I always take my pills as instructed by my doctor. I learned from my mistake, and constantly remind myself that this disease is invisible, and that I will always live with it until the day that someone finds a cure. I hope every day that someone finds it soon. One of the phrases that I tell myself is - "You don't know how strong you are until being strong is the only choice you have." because living with lupus isn't easy." - Daniela, Mexico. 
 

 


The Blessed Gift of Motherhood

"This is MY story is not your typical story, I haven't lived in pain after my first year "too much," I consider myself blessed. My name is Lupe, I was diagnosed in Feb 2010. I have renal failure. I was in the hospital, and each day I was notified that my kidney function decreased 50% each day till I was 0% functional. I had an emergency cathedar placed on my chest and started my journey to save my life. I had 6 months of Cytoxin and nearly lost most of my hair. The medication set my emotions from depressed, scared, to helpless and just a mess. My nephrologist off the record advised me to concoder a histerectamy because having children could kill me and the fetus. But if you knew me in real life... You would know I'm stubborn hard headed and determined. 

Why do I feel blessed? After the DR told me I couldnt be a complete woman and bare a child, I did my own research.

I waited for my Lupus to calm down to a "safe" level. I knew my child baring years would end sooner because of the hormones. So I asked my wonderful friend to help make me a mom. June 2013 my beautiful miracle was born. 5lbs 6oz of pure boy joy.  My Lupus flared just a little, I had a rough 6 months after birth woth joint pain. A price worth my son. I didn't think I would have more children, but in Aug 2015 I married the love of my life, I was healthy, and we tried for a child.  With the miracle of God and science, I became pregnant again. I was blessed to be pregnant with not 1 child, but 2.

My name is Lupe, I am 34 years old. I was diagnosed and nearly dead in 2010, I am now a mother of 3 and living a busy happy life." 

 

Maritza Cardenas