You are not alone

This year has been very difficult. I had a serious mental health even followed with several suicide attempts. I was hospitalized and afterward, I moved to Ankeny to live with friends and to attend a fifteen-week intensive outpatient therapy group.

I am living with severe depression, more specifically I was diagnosed with major depressive disorder (MDD).  According to the Diagnostic and Statistical Manual of Mental Disorders (DSM-V), MDD presents with depressed mood or a loss of interest or pleasure in daily activities for more than two weeks and impaired function in social, occupational, and educational activities. Additionally, MDD is a significant mental health condition that can affect every aspect of life.

Living with any mental illness makes life difficult. It doesn’t make you weak it makes you stronger. I am not proud of my suicidal thoughts and actions, but they did happen. The important thing is that I got help and it indeed helped.

I know that I am not the only person with mental health issues. I am like many other people and especially like many people living with cystinosis or any other rare disease. At times, I wish that I did not have cystinosis or that it would just go away. I would like to experience life without having cystinosis. I want to be normal.

As you may be aware, I am working on my Bachelor’s degree in psychology and I am considering getting a Ph. D in psychology afterward. I decided to go into psychology because when I was growing up with cystinosis, I did not have a mental health professional who really understood what I was going through. I felt that many of the mental health professionals I saw lacked an understanding of what it is like living with a rare disease and being transgender.

Thus, here I am working to become the professional that I was looking for.

Therefore, I plan to work within the field specializing in rare diseases and/or organ transplantation. I want to be there for young people like myself.

If you are having suicidal thoughts go to the nearest Emergency Department. You can also call the National Suicide Prevention Hotline at 1-800-273-8255, the Trevor Project at 1-866-488-7386, or you can call or text me at 1-712-314-8258.

Please remember that you are not alone. Please reach out for help. No one can do this thing called life alone.

 

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$63,000 for a medication!

cysteamine-bitartrate-figure-3

One of my medications, Procysbi costs $63,000 for a 30-day supply.

I live with cystinosis, a very rare orphan disease that causes the amino acid cystine to accumulate in the cells. It slowly damages all my organs including the kidneys, liver, thyroid, eyes, lungs, muscles, and brain.

CELLS_b-02-big1The primary medication to treat cystinosis is Procysbi. It has the same active ingredient as Cystagon (cysteamine bitartrate), which is the immediate-release form of the primary treatment for cystinosis. The difference is that Procysbi has an enteric coating over the active ingredient. This new form of the drug was only recently approved by the Food and Drug Administration in 2013.

In 2015, the average price was $250,000 a year which is a 2,400% increase compared to the original drug, Cystagon (1).

Unfortunately, because of the high cost of this medicine, insurance companies fight not to cover the drug, and I am left without the drug sometimes for weeks. A recent survey of 50 insurers and pharmacy benefit managers by J.P. Morgan which found that medicines for the rare disease are increasingly subject to scrutiny and possible restrictions on use, as mine are (2).

The Affordable Care Act does not come close to combating this problem of skyrocketing medication prices and the prices of medical care. It does, however, provide that everyone is guaranteed health insurance.

Let’s demand that Congress enact regulations that control the costs of prescription drugs and even lower the cost of these drugs.

Sign this petition calling on Congress to act: Sign here

1.  Carrol, John. “Raptor’s orphan drug-win at FDA overshadowed by debate over steep price,” fiercebiotech.com, Biotech Industry’s Daily Monitor, 1 May 2013. Web 2 Nov. 2015

2. Pollack, Andrew. “Parental Quest Bears Fruit in a Kidney Disease Treatment,” the New York times (2013): B1 Print.

From There to Here

 

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Pott. County Democrats Lunch (Photo Credit: Linda Nelson)

Chapter 1

 

A child lays in a hospital bed with tubes running into her allowing medications to flow into her. This child is very sick, and the doctors do not know what she is suffering from or how to treat it. Her family is there waiting, not knowing what to do or how to help their daughter.

After hours of waiting, the many doctor’s visits, and multiple hospital stays they have an answer to what their daughter has and a possible treatment. The doctors informed her family that she has cystinosis, a metabolic disease that causes cells to crystallize causing early cell death. The disease slowly destroys the organs in the body including the kidneys, liver, eyes, muscles and brain. They tell them that their child has an incurable disease that will eventually take her life.

I am that child. I, Mika Jayne Covington, am the daughter that lives with that fatal illness. I am 25 years old and still living thanks to the doctors and researchers at the National Institutes of Health (NIH). I am still alive.

Cystinosis has been a struggle, and it has been a challenge for me including those who care about me. Yes, perhaps I’m a survivor. However, I’m still living with it every day. There is no break, and I do fall apart from time to time because of it.

When I was a kid, I was always seen as different. Every day, I would go to the nurse’s office to take medications. Many days I had bad breath and body odor from my medications, and I felt sick to my stomach, which usually ended in me vomiting.

Elementary and middle school were particularly challenging for me because of this. Not to forget all the doctor appointments and hospitalizations that I had which caused me to miss a lot of school. Growing up with cystinosis is challenging and quite the journey.

Cystinosis is not the only thing that defines me. I am more than my diagnosis. I am a progressive democrat, a feminist, a human rights activist, an organizer, and a student, beyond all of this, I am a person.

However, cystinosis is part of everything. It is with me every day and intersects everything I do. Because I must take medications daily and I must make sure that I have health insurance no matter where I go to school or work. I even cannot leave for a weekend vacation without packing medications, and it is not just a couple, it is thirty different drugs. Because of them, I am reminded of the disease every several hours.

In the second grade, there was a boy in my class; we would go to his house and play games together. We frequently played at school during our recesses. I was drawn to him. He always stood up for me against the big bad bullies. He would hug me and tell me, “Don’t cry, I won’t let’em hurt you.”

At that age, I did not think that I was different or see that there was anything wrong with me. I had no idea what being gay was. I was me, and he was my best friend, that was all I saw back then.

Later, my family moved to Wahoo, Nebraska and I never spoke to him again. I was in the third grade when I first heard the word ‘gay.’ I did not understand what it meant and I was too busy playing and being a kid to worry about it. Until my classmates started calling me gay and a sissy because they saw me as weak and I did not do or like what most of the other boys did. There were also these feelings that I did not quite understand. I thought that they were normal, so I did not pay much attention to them.

I was busy trying to be ‘normal’ while living with cystinosis. Taking medications and dealing with side effects. Making up school work from missed classes because of hospital stays and doctor’s appointments. I just did not have the time or want to deal with another thing that made me seem different from everyone else.

Around the end of third grade, someone called me a ‘faggot.’ I cried that day for hours. I could not understand what it meant but knew that it hurt me that people would call me these names. I began to realize that I was different and I had no idea what they saw in me that was bad or wrong with me.

It was in the fourth grade when I began having sexual feelings and started to think that I might be gay. I tried to push them away and tell myself, “No, it’s wrong to think like that.” I believed that I was sick and depression set in. I had no idea what to do. I wanted to go back to second grade and be with my friend; he would make all the bad things go away. I tried to pretend that I was sick all the time so I would not have to go to school or be able to leave early to get away from the bullying.

In 2010, my senior year in high school, I turned 19 and lost my health insurance. In Nebraska, a person becomes a legal adult at age 19 and per Medicaid rules, one must re-apply for coverage. I did just that and was denied. I was told that I was not eligible for coverage for having a pre-existing condition (cystinosis). I tried applying four times with the same results.

Thus, while attempting to be a regular high school student and completing my senior year, I needed to figure out how in the world I was going to get health insurance. I needed the insurance to cover all my medications that kept me alive and keeps the disease at bay.

At this point, I was working at J.C. Penney, but not nearly making enough money to cover private health insurance. Not to forget, I was beginning my process of coming out as transgender. And finding my political affiliation as a Democratic Socialist.

While many of my friends were talking, and laughing about who they were dating, talking about what college they planned to attend, and what classes they would take, I wasn’t, no not me. They made me feel angry, hurt, and mad at the world and God. Nevertheless, I understood that perhaps I saw the world a bit more clearly than they did. I guess they all may have made me stronger, and that they made me into the person I am today. I was even forced to make sacrifices that I did not want to make, but I knew I needed to so that it would protect me and get things done.

National Institutes of Health (NIH)
National Institutes of Health (NIH)

With no avenue to appeal their decision, I decided to focus on graduating high school and going to college until my scheduled trip to the National Institutes of Health (NIH) that fall. I went most of that year without any medications, which resulted in me going into end stage renal or kidney failure and it probably cut a few years off my life. I went from needing a kidney transplant in 2-4 years to needing one in six months to one year. If I had had health insurance and access to the medications, I might have been able to wait until after college to have a kidney transplant.

After I had graduated from high school, I knew I wanted to contribute to society in any way possible and work to create the change I seek. Unfortunately, having cystinosis and going on dialysis forced me to stop working. To stay busy, I volunteered on issue and political campaigns, such as fighting for full federal LGBTQIA (lesbian, gay, bisexual, transgender, queer, intersex, and asexual) equality, voting rights, and healthcare for all. I am passionate about these because I look forward to a future where everyone has the right to vote, has full and equal human rights, and access to high-quality health care. For me, these causes are important because I know first-hand how not having access to health care can cause a chronic disease to get worse like mine did.

Chapter 2

In 2011, I faced more challenges that made it more difficult for me to attempt to put cystinosis in a box as just one detail of who I am because my kidneys failed. I would need a kidney transplant or start dialysis. Therefore, my doctors put me on hemodialysis and at the time I did not have an organ donor.

hemodialysis1Hemodialysis is a form of kidney dialysis that can be done with a catheter (a plastic tube) placed in the chest into the superior vena cava (a very large vein right about the heart) that is used to cycle blood into a machine that cleans it and returns it. I was on this form of dialysis every other day for four hours in a medical center for about ten months.

I knew that I would need to look for a kidney donor because I could not indefinitely live on dialysis. After a couple of months of searching, I found one, and her name was Erika von Kampen. She was a match, and we had the transplant scheduled at the University of Nebraska Medical Center (Nebraska Medicine). Unfortunately, the operation was unable to happen there, and I had to move on.

PD Bag
PD Bag

Therefore, in February 2012, I switched to peritoneal dialysis. This form of dialysis uses my body, the peritoneal membrane in my abdomen as a filter to clear wastes and extra fluid from my body and returns electrolytes.

I was on peritoneal dialysis for fifteen months. This form can also be continuous, which I did go to when I had a cycler so that it could cycle the fluid at night while I slept. I was on it from 2012 to May 30, 2013, when I received a kidney transplant from the University of Iowa Hospitals and Clinics (UIHC).

PD Cycler
PD Cycler

Sophomore year at Wahoo High School was sort of the best and worst year I had ever had in Wahoo. I decided that I could be ‘normal.’ I worked to open up to people and put myself out there. I just wanted to be like everyone else, to be normal. I decided that to be normal, and I should find a girlfriend. My cousin had a friend who I also knew, and we had several things in common. I asked her and my cousin to go to the homecoming dance. I thought it would be a safe way to attempt to belong.

New Year’s Eve, I was with my older sister and cousin, we were celebrating the promise of the New Year, and I told them that I was indeed bisexual. Both my cousin and sister said, “Yea, we know.” They poked fun for a bit, in a loving way, and we continued chatting as we always had. I finally felt like I could be myself.

The next day was a new year; I felt it was time to live openly, and I experienced firsthand what living honestly meant. Including the pain of being different in a small town high school in the United States, and especially in Nebraska where it was legal to bully and harass a fellow student based on their sexual orientation. To this day, there are no state or federal laws banning bullying or harassment based on sexual orientation or gender identity.

As an openly ‘gay’ student, I experienced bullying and harassment in a new way, but I decided I would have to live with what was thrown at me. Soon the bullying escalated to the point where I needed to leave Wahoo. I became very depressed and angry. I didn’t completely understand why I felt that way. Especially since I just came out and from my research, I should be feeling better. Nevertheless, I didn’t feel any better. I still felt wrong in my body.

One Summer day, after watching my older sister have her nails done, something happened. It was like a light went on. I started to wonder what it would be like to have my nails painted. Thus, when I went back to school a couple of my friends, and I painted my nails, and I liked it.

Soon, I felt more comfortable and started looking at expanding my gender expression. I looked at wearing tighter jeans from Hot Topic. I knew that guys were not ‘supposed’ to paint their nails or wear so-called ‘girly’ clothes. However, I wanted to wear them, and they made me feel more safe and comfortable. They also scared me to death. Then, I became active in other things to express myself such as choir, drama, and activism.

 

As I’ve said, cystinosis is only a part of my life, and peritoneal dialysis changed my life to make it a smaller part of it. It was like I had some of my freedom again. I was able to follow my passion and fight for what I believed in again. I was able to become active in politics, and I met many wonderful people including Amber Bordolo a Field Organizer with Organizing for America (OFA).

While I went to college at Iowa Western Community College (IWCC), working on my Associate’s degree in psychology, Amber invited me to a couple of her events. I finally attended one of them, became friends with her, and she recommended that I apply to become a Summer Fellow (intern) at OFA. Little did I know how big of an impact that was going to have on my life.

398777_10150940759848430_1366498105_nIn the beginning, I worked to organize house parties and other events to get supporters together, fired up and ready to go to work to get the President re-elected. Soon, I moved into a different stage of the campaign where I made many calls to convince voters to support him. Additionally, on the campaign, I had the chance to go to Des Moines, Iowa to see the President speak to a crowd of supporters at the Iowa State Fairgrounds where I was able to stand on stage behind President Barack Obama.

While I worked with OFA, I considered going to UIHC to get on their transplant list and perhaps have a living donor transplant.

University of Iowa Medical Center
University of Iowa Medical Center

In September of 2012, I went to Iowa City, Iowa for medical tests and evaluations at UIHC Transplant Center to see about being placed on their list. I passed and was placed. Additionally, I went out to find a living donor. This included me sharing my story and health condition with people. Then I sent out packets of information and forms to eight individuals who were interested. However, only three were returned to the transplant center, and one was a match, but had complications and could not donate. I had to make a choice, spend more time sending out packets or see if Erika was still willing to donate her kidney.

I was lucky because Erika was still interested in donating. Once she filled out the forms, and they were returned to the transplant center, they immediately scheduled her for an appointment to be evaluated since we already knew she was an excellent match. The operation was scheduled for May 30, 2013, which I dubbed adoption of Serenity because I named the new kidney Serenity.

Chapter 3

IV meds post-op transplant.
IV meds post-op transplant.

I wake up feeling pain and choking on the dryness in my throat. The nurses around me are talking and doing things with my iv lines. I couldn’t understand exactly what they were doing.

One of them asks me, “Mika, what is your pain level?” I don’t respond, and I just groan because I still am fighting the hoarseness and dryness in my throat. I try to swallow the saliva that isn’t there and fall back asleep.

I wake again hearing someone ask me, “Mika, can you tell me what your pain level is?”

I clear my throat and say, “I feel pain. A lot of pain.”

The person replies, “Yes, what is the pain level? One to ten.”

I reply, “It is an 11.” I then feel someone touching my arm, and I fall asleep once again.

Jon and me after our surgeries!
Erika and me after our surgeries!

The next thing I remember is people talking and being in a different room but I was not wearing an oxygen mask. Someone in the room was speaking but not towards me. I ask, but to no one in particular, “Water, I need water.”

At one moment of my consciousness, before I was fully awake, I turned to my grandmother and weakly said, “No more dialysis.”

I am a bit more conscious and aware, and I see that I am in a private patient room with family around. A nurse is trying to talk to me about the surgery, the morphine pump, only being allowed ice, and needing to get up to walk by 10:30 pm.

I am living with full kidney function thanks to Erika and the staff at UIHC. The transplant gave me my life back literally and figuratively. I started the journey to kidney transplant on November 22, 2010, to May 30, 2013. Those were three very long years of two types of dialysis, doctors’ visits, and hospital stays. All I must deal with now is immune – suppressants, cystinosis medications, blood thinners, transgender hormones, and fighting to continue to have health insurance.

But, it is still hard. I don’t know what it is like to just live. To live without there being a struggle or some challenge to overcome. Ever since I graduated high school, I have been living from one struggle or challenge to overcome to the next. No time to breath, no time to relax or get comfortable. Or at least the moment that I start to relax something new happens, another challenge confronts me. I know how to survive but do not know how to live.

Nevertheless, cystinosis and most of the challenges that I have faced have not halted my endeavors. I wanted to do more for society, and I have done that. Therefore I volunteered with the Iowa Pride Network and volunteered to be on their College Leadership Team.

On their team, I organized and ran the IPN Southwest Regional Gay-Straight Alliance Coalition. This Coalition was a great way for LGBTQIA youth and students to come together and have a safe space. Additionally, the coalition consisted of one meeting a month, and the meetings were educationally based on filling the education gap on LGBTQIA studies and issues.

While I was a member of the College Leadership Team, I was a college student at Iowa Western Community College, and in the summer of 2012, I had my first taste of political campaigning.

As I spoke about before, I became a Summer Organizer for Organizing for America (OFA) or the Obama campaign. In that position, I had many responsibilities including working closely with volunteers and talking with Iowa voters. I recruited, managed, and trained volunteers to organize their communities and neighborhoods into teams that registered, persuaded, and motivated voters. I organized my turf, which included most of Iowa House District 16. I planned and successfully organized one of the largest Equality Nights in Iowa.

During that Equality Night, I lead a discussion on the accomplishments of President Barack Obama and the Democrats for the LGBTQIA community. Additionally, I worked to grow neighborhood teams on a grassroots level and managed team leaders.

For me, this was an excellent experience to develop as an adult, learn how to handle several tasks at once and focus on total goals. It was also fun. I loved talking to voters and making connections with them about what is important in their lives and how Democrats can work with them to better their lives.

In 2007, I left Wahoo, Nebraska with my family. Most of that summer we lived in a subdivision of Omaha, Nebraska. When school started, I moved in with my cousin and her family, that way I was able to attend school with her at Millard South High School. There I met many new people. People were finally accepting of my sexual orientation and gender expression. I even met other openly LGBT students. Millard South was a safer environment for me. I was able to open up and become the person who I truly was all along.

Millard South even offered many additional academic opportunities than the small-town school. I was able to take part in the German program at Millard South. I was able to thrive there, and I gained some confidence.

Students and teachers at Millard South thought something of me. They believed that I could accomplish some awesome things in my future. I had a couple of teachers who believed in me especially when I did not believe in myself. They kept giving me encouragement. They told me to keep fighting for what is right. They believed in me when I needed someone, even when my family was not there for me. I will never forget all that they have done for me, and I hope I can repay them.

My new pride and confidence did not help me at home. As I become more open about myself, my mother and her boyfriend became negative towards me. My mother not only did not understand who I was, but she also seemed not interested in trying to learn. Both thought that I needed mental help for who I was.

On that particular issue, perhaps they were right. I needed help dealing with the damage that they were causing. I also needed someone who could help me understand myself. I’d known for years that I was different and my time at Millard South allowed me to develop and embrace parts of my identity. But, I felt that there was something more. I could not piece together why I felt that I was incomplete.

The therapist that I did see understood that the problems at home were multifaceted and did have a lot to do with my mother and her boyfriend. She understood that some of the challenges I faced were related to being queer and dealing with bullying and harassment in my life. These sessions helped me begin to accept a fact about myself that I had previously been unable to come to terms with. I could identify the roots of some of the problems and discovered more about my identity. I realized that the only way to overcome the feelings of injustice I had was to continue to fight for my rights.

At one of the sessions where my mother and I were at, I remember yelling, “Well, I am sick of listening to you cry about your problems! We are here about me! I am transgender!”

That day forward, I began coming out to people. On October 11, 2009, I told the store manager at J.C.Penny that I was transgender. I told her that from that moment on I would be identifying as female, using female pronouns, and prefer being addressed as Mika. This is the time I began the process of coming out at school and requesting my teachers to address me the same.

Chapter 4

Coming out as transgender was one of the hardest things I’ve ever done. I was terrified. I knew my family didn’t like me being queer. I was concerned about how my friends at school and work would treat me. I even expected to lose my job.

It has been a long journey. I wonder why I did not notice or understand sooner. Coming out opened my mind to new possibilities. It helped me accept myself, and I could improve my academics and work beyond what I thought I could.

After nearly six years of living openly as myself, I have started the medical transition to assist me in confirming my gender. I recently started transgender hormone therapy. The hormone therapy helps in establishing my secondary gender characteristics.

During the hormone therapy, I take two medications spironolactone (Aldactone) and estradiol (Climara). The spironolactone is used to suppress the male sex hormone (testosterone), and the estradiol is used to add the female sex hormone (estrogen).

Furthermore, I have hypogonadism, which causes my body’s sex organs not to produce healthy levels of testosterone. Because of the hypogonadism, my body was never exposed to large amounts of testosterone. Therefore, I could transition into my real gender much easier socially.

Coming out as transgender, has abled me to become a full person. I can be who I was all along. Yes, there were many challenges that everyone including myself faced. For example, many of us cannot access high-quality health care, find health insurance, change of identity documents, fair housing at colleges and universities.

In my case, I had numerous experiences of health care providers refusing to recognize my gender identity. This led to many occasions of embarrassing moments where a nurse would call my name, and I would walk over. The nurse would then ask me who I was, and I would tell them. They would say, “You aren’t a male, I am looking for a male.” Yes, that kind of occasion. There were also those events where the doctor comes in and asks me, “Where is Mika at?” I would tell them, that I am the patient. Then, I would get, “Oh! Well, I guess I have the wrong room.” Yeah, it was wonderful!

In regards to gaining health insurance, transgender individuals can get health insurances regardless of their gender identity. Despite that, most insurance policies do not cover any gender confirming treatments, and they are unlikely to include gender-confirming surgeries. Consequently, transgender individuals do not get the health care they need and in many cases or must pay out of pocket.

Thus, many transgender people are not getting the health care they require. Hence, why I waited six years to start any form of gender confirming treatments. Only recently did government policies change to allow Medicare and Medicaid to pay for some gender confirming procedures. At the moment, all of my gender confirming procedures are covered under Medicare part D. I am lucky because many transgender individuals do not have cystinosis that qualifies them for Medicare and Medicaid.

Furthermore, changing your identity documents is not a walk in the park either. It costs money and if you do not have that money you just cannot change them. As a transgender person, it destroys you every time you must show that card to someone, and it doesn’t represent who you are.

Imagine, how would you think you feel if you go to an airport to go on a vacation and going through security you must show a card that says you are male. But you apparently look like a female, and on top of that, you must use a name that isn’t you. This is the situation for many transgender individuals.

Additionally, transgender individuals face many difficulties when applying for on-campus housing at colleges and universities. Many college and university housing policies say that they make placement decisions based on the legal or biological sex of a student. This is unfair and a problem.

In my case, I first applied to live on campus at Iowa Western Community College, and the campus housing administration had to have a discussion with me on my “trans issue.” They told me during that conversation that I could live on campus if I lived in a male dorm, and they said I would probably need to dress as a male.

Ever since getting involved in politics in 2012, I stayed involved because I felt that it was an important endeavor. Therefore, I became more active within the local party and learned more about Iowa politics, my new home. I stayed involved in Nebraska as well, where several Nebraska citizens were interested in fighting for second parent adoption.

It was in the winter of 2012, and I worked with these residents who did not have the ability to secure their families through second parent adoption or join adoption in their state. After we had done extensive research, we began working with Nebraska State Senator Sara Howard (District 9) to introduce a bill in the state legislature.

photo (1)Senator Howard introduced LB380 in February 2013 to correct Nebraska law. I then ran a grassroots campaign for the bill that consisted of an online petition, emails, and calls to State Senators. And I organized postcard making parties in several cities throughout eastern Nebraska, which was sponsored by MoveOn.org. Unfortunately, the bill did die that session, but Sen. Howard continues to fight for families in the state legislature.

While, I was working on the second-parent adoption bill, I was the field director of Forward Equality. The organization was formed by myself, several friends of mine including a former professor of mine. Forward Equality worked on progressive issues ranging from workers’ rights to civil rights. I worked (non-paid) at Forward Equality from April 2010 to April 2014 when it dissolved.

Chapter 5

As I said, I continued to be involved in the Iowa Democratic Party. I was elected to serve as the Pottawattamie County Affirmative Action Chair, and I served from February 2014 to October 2015.

11391246_981335545240787_107062442060574773_nAs the Affirmative Action chair, I organized an Affirmative Action Committee in Pottawattamie County for the County Democrats. We worked to ensure that our party was following the Democratic Party’s rules and regulations on the Americans with Disabilities Act of 1990 and their diversity requirements. This included organizing our involvement in several Pottawattamie County events such as Celebrate Council Bluffs and Heartland Pride LGBTQIA Parade and Festival. We also assisted in ensuring that the Pottawattamie County 2016 Caucus locations were ADA accessible to the best of our abilities, and we worked to bring those who historically felt unwelcome back into the party.

Moving forward, I have been involved in the 2016 Democratic presidential primary. I supported Senator Bernie Sanders for President, and I first met him back in September 2014 at an event he was speaking at in Des Moines, Iowa.

From that moment on I knew that he was a person that I was willing to fight for and put in long hours campaigning for. Sen. Sanders wasn’t running for president at that moment, though. He was only considering it. I decided that I had to work to get him to run. Thus, I volunteered with the Run Bernie Run campaign to convince the Senator to run for President as a Democrat.

On May 26, 2015, Sen. Bernie Sanders surprised many people including myself by announcing that he was indeed running for president and that he was going to run as a Democrat. I knew at that moment that I had to learn how I could help him while living in Council Bluffs, Iowa. However, I was still the Affirmative Action Chair, and I was forced to make a choice. I had to decide if I wanted to throw my full public support behind him.

The decision was thrust upon me the last week of June when I received a call by the Sanders campaign asking me if I would be interested in introducing the Senator at his town hall in Council Bluffs on July 3rd. I felt overwhelmed with excitement and terror. I have never spoken publicly to over 2,000 people. Thus, my first response to the staffer who called me was to give me some time to think about it. I said this even though in my heart I was screaming to go and do this.

On July 3, 2015, I gave one of the first speeches kicking off the Bernie Sanders campaign in Iowa. I was nervous, but I did my job and did it well for Bernie. That day forward, I began volunteering for the Senator. I did this for his campaign for months until December when I was hired on to the campaign as an Organizing Fellow. I was officially on the Bernie Sanders campaign payroll.

Introducing Sen. Sanders
Introducing Sen. Sanders

I was an OF for two months before I was promoted Field Organizer. I that position, I recruited managed and trained volunteer. I built and led several volunteer canvass and phone banks.

14102677_10153641460691923_3415136486597262791_nOn the campaign, I worked in Iowa and Nebraska on their caucuses. While in Nebraska, my turf included Lincoln but I also knew people in three other counties. Thus, I helped to organize them as well. Two of the three counties went for Bernie.

After the Nebraska caucuses, I was sent back to Iowa to work on our county conventions making sure that Sen. Bernie Sanders got a fair representation by having all his delegates show up.

Between working on the Iowa conventions, I was sent to Kansas to help organize the campaign’s participation at their state district conventions. Afterward, I went back to Iowa to work on the district conventions. Nonetheless, I was sent to Colorado to assist with organizing for their State Convention. In Colorado, I helped in several ways including monitoring the official ballots and observing the counting of those ballots. I also signed off on the initial hand count of the official ballots as the Sanders, campaign staffer.

I am proud to have worked for Senator Bernie Sanders and voted for him in the Iowa caucuses. I worked for him as an FO from February 2016 to May 3rd, 2016. Nonetheless, I was not finished working for and representing the movement for a progressive future and the political revolution started by the Senator. At the 3rd Congressional District convention, I ran for national delegate to represent Iowa at the Democratic National Convention. I did not win enough votes to go.

Later at the State Convention, I ran for Democratic National Committee member to represent the movement of progressive voices and the youth voice of Iowa. I won a significant number of votes to make me a strong challenger against the party establishment. Unfortunately, I did fail to gain a majority of the votes. Moreover, we did show the establishment that their politics are no longer what many in the party want and they should begin to listen to us otherwise, they may lose their power.

Today, I am living my life. I am out and open about who I am. This is who I am, a human being who has a tremendous passion for making this world a better place for all. I am a person who lives with cystinosis and who is a transgender woman. I am a sexual assault survivor, a human rights activist, a feminist, a student, and a fighter.

This is my story, and it continues.

The Story of Mika

IV meds post-op transplant. Not many compared to most transplant patients.
IV meds post-op transplant.

I wake up feeling pain and choking on the dryness in my throat. The nurses around me are talking and doing things with my iv lines. I could not understand what. One of them ask me, “Mika, what is your pain level?” I don’t respond, I just groan because I still am fighting the hoarseness and dryness in my throat. I try to swallow the saliva that isn’t there, and fall back asleep.

I wake again hearing someone ask me, “Mika, can you tell me what your pain level is?”

I clear my throat and say, “I feel pain. A lot of pain.”

The person replies, “Yes, what is the pain level? One to ten.”

I reply, “It is a 11.” I then feel someone touching my arm and I fall asleep once again.

Jon and me after our surgeries!
Erika and me after our surgeries!

The next thing I remember is people talking and being in a different room but I was not wearing a mask. Someone in the room was speaking but not towards me. I ask, but to no one in particular, “Water, I need water.”

At one moment of my consciousness before I was fully awake, I turned to my grandmother and weakly said, “No more dialysis.”

I am a bit more conscious and aware, I see that I am in a private patient room with family around. A nurse is trying to talk to me about the surgery, the morphine pump, only being allowed ice, and needing to get up to walk by 10:30pm.

Cystinosis has been a struggle. It has been a challenge for me and those who care about me. Yes, perhaps I’m a survivor. However, I’m living with it every day. There is no break and I have fallen apart from time to time because of it.

When I was a kid, I was always seen as different. Every day, I would got to the nurse’s office to take medications. Many days, I had bad breath and body odor from my medications, and I felt sick to my stomach. This usually ended in me vomiting.

Elementary and middle school were especially difficult for me because of this. Not to forget all of the doctor appointments and hospitalizations I had to go to which caused me to miss a lot of school. Growing up with cystinosis is difficult and quite the journey.

530218_4348259423965_656840845_nCystinosis is not the only thing that defines me. I am more than my diagnosis. I am a progressive democrat, a feminist, a human rights activist, an organizer, and a student. Beyond all of this, I am a human being.

Cystinosis is part of everything. It is with me every day and intersects everything. Because I must take medications every day and I must make sure that I have health insurance no matter where I go to school or work. I even cannot leave for a weekend vacation without packing medications and it is not just a couple, it is twenty-three different medications. Because of them, I am reminded of the disease every several hours.

In 2010, my senior year in high school, I turned 19 and lost my health insurance. In Nebraska, a person becomes a legal adult at age 19 and according to Medicaid rules one must re-apply for insurance. I did just that and was denied. I was told that I was not eligible for coverage for having a pre-existing condition (cystinosis). I tired applying four times with the same results.

While attempting to be a regular high school student and completing my senior year, I needed to figure out how in the world I was going to get health insurance. I needed the insurance to cover all of my medications that kept me alive and keeps the disease at bay.

At this point, I was working at J.C. Penny, but not nearly making enough money to cover private health insurance. Not to forget, I was beginning my process of coming out. And finding my political affiliation as a Democratic Socialist. This caused several other issues or benefits. It really depends on how you look at it.

Many of my friends were talking and laughing about who they were dating, talking about what college they planned to attend, and what classes they would take. No, not me, listening to them talk of these things actually made me feel angry, hurt, and mat at the world and God.

Nonetheless, at some point, I understood that I was seeing the world more clearly. I guess they all may have helped made me stronger in a way. They may have helped make me into the person I am today.

Growing up, I have made sacrifices that I did not want to make. But, I knew that I needed to, so that they would protect me and get things done.

The year 2011 was even more difficult for me to attempt to put cystinosis in a box as just one detail of who I am because my kidneys failed. I would need a kidney transplant or start dialysis. Thus, my doctors put me on hemodialysis. At the time I did not have a kidney donor.

Hemodialysis is a form of kidney dialysis that can be done with a catheter (a plastic tube) placed in the chest into the superior vena cava (a very large vein right above the heart) that is used to cycle blood into a machine that cleans the blood and returns it. I was on this form of dialysis every other day for four hours of the day in a center for about ten months.

I knew that I would need to look for a kidney donor because I could not indefinitely live on dialysis. After a couple months of searching I found one, her name was Erika von Kampen. She was a match and we had the transplant scheduled at the University of Nebraska Medical Center (Nebraska Medicine). Unfortunately, the transplant was unable to happen there and I had to move on.

PD Cycler
PD Cycler

Therefore, in February 2012 I switched to peritoneal dialysis. This form of dialysis uses my own body, the peritoneal membrane in my abdomen as a filter to clear wastes and extra fluid from my body and returns electrolytes.

 

I was on peritoneal dialysis for fifteen months. This form can also be continuous, which I did go to when I had a cycler so that it could cycle the fluid at night while I slept. I was on it from 2012 to May 30, 2013 when I received a kidney transplant at the University of Iowa Hospitals and Clinics (UIHC).

As I’ve said, cystinosis is only a part of my life. Peritoneal dialysis changed my life to make cystinosis a smaller part of my life. It was like I had some of my freedom again. I was able to follow my passion and fight for what I believe in again. I was able to even become active in politics, I also met many wonderful people including Amber Bordolo a Field Organizer with Organizing for America (OFA).

I was going to college at Iowa Western Community College (IWCC), working on my Associate’s degree in psychology, when Amber invited me to a couple of her events. I finally attended one of them, became friends with her, and she recommended that I apply to become a Summer Fellow (intern) at OFA. Little did I know how big of an impact that was going to have on my life.

398777_10150940759848430_1366498105_nAt the beginning, I worked to organize house parties and other events to get supporters together, fired up and ready to go to work to get the President re-elected. Soon, I moved into a different stage of the campaign where I made many calls to convince voters to support him. Additionally, on the campaign, I had the change to go to Des Moines, Iowa to see the President speak to a crowd of supporter at the Iowa State Fairgrounds where I was able to stand on stage behind President Barack Obama.

It was while I worked with OFA, that I looked into going to the UIHC to get on their transplant list and perhaps have a living donor transplant.

In September of 2012, I went to Iowa City, Iowa for medical tests and evaluations at UIHC Transplant Center to see about being placed on their list. I passed and was placed. Additionally, I went out to find a living donor. This included me sharing my story and health condition with people. Then I sent out packets of information and forms to eight people who were interested. However, only three were returned to the transplant center and one was a match, but had complications and could not donate. I had to make a choice, spend more time sending out packets or see if Erika was still willing to donate her kidney.

I was lucky because Erika was still interested in donating. Once she filled out the forms and they were returned to the transplant center, they immediately scheduled her for an appointment to be evaluated since we already knew she was a very good match. The transplant was scheduled for May 30, 2013, which I dubbed adoption of Serenity because I named the new kidney Serenity.

I am living with full kidney function thanks to Erika and the staff at UIHC. The transplant gave me my life back literally and figuratively. I started the journey to kidney transplant on November 22, 2010 to May 30, 2013. Those were three very long years of two types of dialysis, doctors’ visits, and hospital stays. All I must deal with now is immune-suppressants, cystinosis medications, and fighting to continue to have health insurance.

But, it is still hard. I don’t know what it is like to just live. To live without there being a struggle or some sort of challenge to overcome. Ever since I graduated high school, I have been living from one struggle or challenge to overcome to the next. No time to breath, no time to relax or get comfortable. Or at least the moment I start to relax something new happens, another challenge confronts me. I know how to survive but I do not know how to just live. That is what I am learning.

Photo by Iowa Pride Network
Photo by Iowa Pride Network

Nevertheless, cystinosis and most of the challenges did not halt my endeavors. I wanted to do more and give back to society. This is why I volunteered with Iowa Pride Network and volunteered to be on their College Leadership Team. On the team I organized and ran the Iowa Pride Network’s Southwest Regional Gay-Straight Alliance Coalition. This Coalition was a great way for LGBTQIA youth and students to come together and have a safe space. The Coalition consisted of one meeting a month and the meetings were educationally based to fill the education gap on LGBTQIA studies and issues.

While I was a member of the College Leadership Team, I was a college student at Iowa Western Community College and in the summer of 2012, I had my first taste of political campaigning.

As I spoke about before, I became a Summer Organizer for OFA or the Obama campaign. In that position, I had many responsibilities including working closely with volunteers and talking with Iowa voters. I recruited, managed, and trained volunteers to organize their communities and neighborhoods into teams that registered, persuaded, and motivated voters. I organized my turf (most of Iowa House District 16), I planned and successfully organized on of the largest Equality Nights in Iowa. During that event I lead a discussion on the accomplishments of President Barack Obama and the Democrats for the LGBTQIA community. In addition, I worked to grow neighborhood teams on a grassroots level and managed team leaders.

This was an awesome experience to grow as an adult, learn how to manage several tasks at once and be focused on completing goals. It was quite fun. I loved talking to voters and making connections with them about what is important in their lives and how Democrats can work with them to better their lives.

Ever since getting involved in politics in 2012, I stayed involved because I felt that it was an important endeavor. Therefore, I became more active within the local party and learned more about Iowa politics, my new home. I stayed involved in Nebraska as well, where several Nebraska citizens were interested in fighting for second parent adoption.

It was in the winter of 2012, I worked with these citizens who did not have the ability to secure their families through second parent adoption or join adoption in their own state. After we did extensive research, we began working with Nebraska State Senator Sara Howard (District 9) to introduce a bill in the state legislature.

photo (1)Senator Howard introduced LB380 in February 2013 to correct Nebraska law. I then ran a grassroots campaign for the bill that consisted of an online petition, emails, and calls to State Senators. And I organized postcard making parties in several cities throughout eastern Nebraska, which was sponsored by MoveOn.org. Unfortunately, the bill did die that session, but Sen. Howard continues to fight for families in the state legislature.

While, I was working on the second parent adoption bill, I was the field director of Forward Equality. The organization was formed by several friends of mine including a former professor of mine, and myself. Forward Equality worked on progressive issues ranging from workers’ rights to civil rights (including LGBTQIA). I worked (non-paid) at Forward Equality from April 2010 to April 2014 when it dissolved.

Furthermore, as I said, I continued to be involved in the local Democratic Party. I was elected of the Iowa Democratic Party and severed on the Pottawattamie County Executive Committee as Affirmative Action Chair. I served as Affirmative Action Chair from February 2014 to October 2015.

As the Affirmative Action Chair, I organized the first Affirmative Action Committee in Pottawattamie county for the county Party, where we worked to ensure that our Party was following the Iowa Democratic Party’s rules and regulations on the Americans with Disabilities Act of 1990 and their diversity requirements. This included organizing our involvement in several Pottawattamie County events such as Celebrate Council Bluffs and Heartland Pride LGBTQIA Parade and Festival. I assisted in ensuring that the Pottawattamie County 2016 Caucus locations were ADA accessible to the best of our abilities, and we worked to bring those who historically felt unwelcome back into the Party.

Moving forward, I have been involved in the Presidential Democratic primary. I was a supporter of Sen. Bernie Sanders for president. I first met him back in September 2014 at an event he was speaking at in Des Moines. From that moment on I knew that he was a person that I was willing to fight for and put in long hours campaigning for. He was my candidate. But, at that time Sen. Sanders was not running for president, he was only considering it. I then decided that I had work to do. I volunteered with the Run Bernie Run campaign to get Sen. Sanders to run for president and as a Democrat and I did that for a couple of months by sharing word about Sen. Sanders and sharing a petition for him.

On May 26, 2015, Sen. Bernie Sanders surprised many people including myself by announcing that he was indeed running for president and that he was going to run as a Democrat. I knew at that moment that I had to find out how I can help him out in Council Bluffs. However, I was still the Affirmative Action chair for the Pottawattamie County Democrats and so it made my choice to throw my full public support behind Sen. Sanders.

The choice was thrust upon me the last week of June when I was called by the Bernie Sanders campaign asking me if I could introduce Sen. Sanders at their town hall in Council Bluffs on July 3, 2015. I felt overwhelmed with excitement and terror. I have never spoken publicly to over 2,000 people. Thus, my first response to the staffer who called me was give me some time to think about it. I said this even though in my heart it was screaming go and do this

11695825_10204817824588262_1182260142788144659_nOn July 3, 2015, I gave one of the first speeches kicking off the Bernie Sanders campaign in Iowa. I introduced Sen. Sanders in Council Bluffs, Iowa. I was so nervous but I did my job and did it well for Bernie. That day forward, I began my volunteering for Sen. Sanders. I volunteered on his campaign for months until December when I was hired as an Organizing Fellow for the campaign. I was officially on the Bernie Sanders campaign payroll.

I was an Organizing Fellow for two months before I was promoted Field Organizer. In that position I recruited, managed and trained volunteers, and I built and managed several volunteer canvass and phone banks.

1240631_10208286387655555_8846839057021492748_nWhile on the campaign I worked in Nebraska on their caucus. There my turf included Lincoln but I also knew people in three other counties so I organized them as well. Two of the three counties went for Bernie. After the Nebraska caucuses, I was sent back to Iowa to work on our County Conventions making sure Bernie got a fair representation by having all of his delegates show up.

Left: Michael Moore Center: Mika Covington Right: Annaleah Moore
Left: Michael Moore Center: Mika Covington Right: Annaleah Moore

Between working on the Iowa Conventions, I was sent to Kansas to help organize the campaigns’ participation at their state’s District conventions. When I was finished in Kansas I went back Iowa to continue to work. Nonetheless, I was sent to Colorado to assist with organizing for their State Convention. There I called to invite people to the convention, organized carpools, and at the convention I helped in several ways including monitoring the official ballots and observing the counting of the ballots. I worked for Sen. Bernie Sanders as a Field Organizer from February of 2015 to May 3rd of this year.

Today, I am living my life, I am out and open about who I am. This is who I am, a human being who has a lot of passion to make this world a better place for all. I am a human being who lives with cystinosis and who is a transgender woman. I am a woman, a sexual assault survivor, a Democrat, a human rights activist, a feminist, a student, and a fighter.

This is my story and it continues. Cystinosis will not win.

Fighting the Govt. for Health Insurance

20160412_114409I am 25 years old and I live with cystinosis. Cystinosis has been a struggle. I live with it every day and many days I do look ‘normal’ and healthy. My illness is not usually visible on the outside to most people.

Living with cystinosis has been a challenged for me and those who care about me. It is such a challenge because of my continued fight to either have health insurance or keep my health insurance. It is so difficult on those who care about me because they see the emotional toll the fight has had on me, and how close I get to giving up sometimes. This seems like a never ending fight with the government to have health insurance, the insurance companies themselves, and the pharmacies. Living with this orphan disease is more than just living with a disease, it effects all aspects of your life.

I was diagnosed with cystinosis around the age of 10 months old. Cystinosis is a rare orphan disease that causes the amino acid cystine to accumulate in the cells, it slowly damages organs including the kidneys, liver, thyroid, eyes, lungs, muscles, and brain. An orphan disease is a disease that has no been “adopted” by the pharmaceutical industry because it provides little financial incentive for the private sector to make and market new medications to treat it.

In 2010, my senior year in high school, is when the fight with the government begun. I turned 19 and lost my health insurance. I lost the health insurance because in Nebraska you are an adult at age 19 and must re-apply for Medicaid. After applying four times I kept getting the same result, that I was not eligible for coverage for having a pre-existing condition, the cystinosis. This resulted in me having no health insurance for nearly eight months and led to me going into end stage renal or kidney failure. I went from needing a kidney transplant in 2-4 years to needing one in six months to a year.

I was on dialysis for almost three years. I started dialysis in May 2011, when I was a patient at the University of Nebraska Medical Center (UNMC) or Nebraska Medical Center (now: Nebraska Medicine) being evaluated for a kidney transplant.

At the beginning I was on hemodialysis, a form of dialysis that is performed with a catheter placed surgically in the chest that is used as an access to cycle large amounts of blood and returns it to the body. Fortunately, I was only on this form of dialysis for nine long months. Until I switched to peritoneal dialysis.

In March of 2012, I started peritoneal dialysis. I switched because I was denied a kidney transplant at the Nebraska Medical Center from my living donor and would need to be on dialysis much longer, additionally hemodialysis was not working out for me.

Peritoneal dialysis is performed using a catheter that is surgically placed in your abdomen that cycles a dextrose mixture fluid into your peritoneal cavity that uses the wall of the cavity as a natural dialyzes that cleans the blood.

downloadToday, I am again fighting the government for healthcare. I was told that I am no longer disabled and that all of my Social Security benefits will end on the last day of July this includes Medicare coverage. i am on my second appeal of their decision. This has taken a lot of me as well.

If I lose the health insurance this will be a very bad thing. I will not be able to have access to most of my medications including my anti-rejection and cystinosis medications. Without the anti-rejection medications my transplanted kidney could start rejecting within a week and I would need to be hospitalized, and I could lose the kidney.