I am 24 years old now, thanks to the person who had true altruism and decided to donate a kidney to me two years ago. Although I do still live with cystinosis. However, on the 30th of May will be the 2 year anniversary of the kidney transplant (or adoption of Serenity). I am doing well. I am doing so much better than I was at this moment two years ago. I hope my living donor is doing well too.
Again, cystinosis is a lysosomal storage disease that is caused by the accumulation of the amino acid cystine. The disease leads to kidney failure, blindness, weak bones, muscle weakness, pulmonary dysfunction, and eventual death. Cystinosis disproportionately affects blond, blue-eyed children of European descent who carry the autosomal recessive genetic mutation to the cystinosin, a protein encoded by the lysosomal cystine transporter gene (CTNS) on chromosome 17p13*.
This year on the anniversary of the transplant, I will be in Denver, Colorado. I am going to a Cystinosis Patient and Caregiver Town Hall. At the town Hall, I will join conversations in how to better treat and improve care for my fellow cystinosis patients. In addition, I will have the opportunity to meet with other individuals with cystinosis and some cystinosis specialists.
However, when I get back from Denver, I will be heading back to the University of Iowa Hospitals and Clinics (UIHC) for the two year post-transplant follow up. But, I will also be following up with Dr. Nisely at the UIHC LGBTQ Clinic. At the LGBTQ Clinic I will learn what we (the team) are going to do about my hormone levels and whether or not I will start taking estrogen.
The following details show how I am doing.
Phosphorus – 3.2
BUN (Blood Urea Nitrogen) – 19
Creatinine – 0.97
Potassium – 4.2
CO2 – 25
WBC – 6.4
Platelet Count – 219
Hemoglobin – 14.4
Phosphorus – 2.5
BUN (Blood Urea Nitrogen) – 14
Sodium – 141
Total Protein – 6.9
Potassium – 3.8
Glucose – 92
Creatinine – 1.1
CO2 – 25
Albumin – 4.6
WBC – 4.5
RBC – 4.5
Hemoglobin – 14.1
Hematocrit – 44
Platelet Count – 220
Thyroid Stimulating Hormone – 1.35
The following is a list of all the medications and supplements I take to treat the cystinosis and prevent my body from rejecting the new kidney.
I have completed another semester at Iowa Western Community College (IWCC) for my associate’s degree in psychology. I completed Intro. Biology with a C, Composition II with an A, Social Psychology with a B, and Intro Sociology with an A. Currently, I have a cumulative GPA of 3.286.
Next semester, I will only have one more left at IWCC. Once, I finish at IWCC I will transfer to the University of Iowa to work on a bachelor’s of science in psychology and perhaps a master’s in public health.
This fall, I will be taking Human Biology; Abnormal Psychology; Gender Ideas, Interactions, Institutions; and Public Speaking.
I am going down this path because I would like to use my education to work within the cystinosis, LGBTQIA+, and transplant communities. I plan to work in research and clinic in those fields.
My friend Tati Urzedowski suffers from gender dysphoria. For him, this means he feels a strong disconnect and sometimes an outright rejection of his body. I have empathy for him because I am genderqueer and understand the hardships of feeling that your body does not fit your gender identity.
About four years ago, Tati realized that he did not quite fit in the gender he was assigned. A year later, he came out as transgender or genderqueer. From that, point on he went through a change in his self-perception and self-worth. He began to live openly among friends as transgender. This year, he expanded his openness about his gender identity/expression and the response from his friends and family has been supportive and accepting.
Realizing I was transgender was by and large a liberating experience for me – Tati
Even with the support and acceptance from Tati’s friends and family, he still suffers from gender dysphoria, depression, and disconnect from his body. He identifies as agender and prefers the gender pronouns he, him, and his. He desires to present himself as masculine, and building muscle mass and practicing postures and behaviors that are more masculine. However, this does nothing to reduce his chest.
There is a distinct challenge getting my identity to be respected and being misgendered can, depending on my mood, completely ruin my day. But it’s a challenge I’m willing to tackle in order for myself and people like me to live their lives freely. – Tati
Tati recently lost his job, and insurance will not cover his gender-affirming surgery. It will cost him over $6,000. He currently uses binders to keep his chest flat. This can cause permanent harm to his body.He is already feeling some negative effects such as more sensitivity and he is more prone to strains and cramps. Because his body does not match his gender identity insecurities are taking a toll on his self-esteem and causing depression.
Frankly, when I look down, I feel like my chest is not my own at all. (…) I want to finally be confident in my own skin and take that stress off my mind. – Tati
I am asking all of you to please visit www.gofundme.com/9drc6k (set up by his friend Ashley) and donate to Tati’s fund so that he can get the medically necessary gender-affirming chest surgery.
Last Saturday May 17, was the International Day Against Homophobia and Transphobia or IDAHOT, a day where communities stand up against violence and oppression. It is also a day to promote freedom, diversity, and acceptance. In 2013, IDAHOT was celebrated by events held in 113 countries and was officially recognized as a National day in Belgium, United Kingdom, France, Luxemburg, Spain, Brazil, Croatia, and by the European Parliament.
Facts about LGBTQIA Issues around the Globe:
81 countries still criminalize being LGBTQIA
4.9 billion or 2/3 of the world’s population have their right to information or expression around sexual and gender diversity systematically violated by their State. (IDAHOT)
In Omaha, Nebraska – IDAHOT was celebrated by a rally at the intersection of 72 and Dodge Streets where LGBTQIA (lesbian, gay, bisexual, transgender, queer, intersex, and asexual) community and allies gathered to take a stand against hate and violence.
At the rally, we also called for full federal equality and encouraged people to take the Full Equality Pledge because the LGBTQIA community is entitled to equal human rights.
In 29 states, you can be fired based on your sexual orientation and in 32 states based on your gender identity.
In 29 states, you can be denied public accommodations (hotels, restaurants, etc.) based on your sexual orientation and in 34 states based on your gender identity.
In 33 states, there is no law giving protection to K-12 students who are bullied and harassed based on their sexual orientation and gender identity.
It was awesome and uplifting to see the reaction by the people driving by. I full heartedly believe that we made a big impact on the hearts and minds of people in Omaha who saw us saturday rallying against hate and standing up for full federal equality. From the child sitting in the backseat of his mother’s car seeing people standing up for human rights, to the sister who will get a picture of her brother and his daughter standing with protesters fighting for her rights. It was a powerful rally. I am glad to have been a part of it and NO ONE can take that away from me.
This year, IDAHOT was celebrated by events held in over 120 countries and events were even held by activists in countries that still criminalize being LGBTQIA. For instance, in Russia activists organized balloon release “flashmobs” in 13 cities and in Khabarovsk and St. Petersburg, activists were attacked. In several other countries, events had been cancelled under pressure from their governments. (IDAHOT)
Highlights from around the Globe on IDAHOT:
Global Leaders spoke out, including United Nations Secretary General Ban Ki-Moon,
“Millions of people around the world observe the International Day Against Homophobia and Transphobia on May 17. (…) I believe in and strive to achieve a world rooted in tolerance, freedom, and equality; a world where we are ALL free to live a life of dignity. There are no exceptions. Human rights are for everyone, no matter whom you are or whom you love.”
United Nations office of the Commissioner for Human Rights released a video campaign for the day.
United States President Barack Obama released a statement,
“As we commemorate the International Day Against Homophobia and Transphobia, we recommit ourselves to the fundamental belief that all people would be treated equally, that they should have the opportunity to reach their fullest potential, and that no one should face violence or discrimination – no matter who they are or whom they love.”
President of Costa Rica raised the rainbow flag outside the Presidential Palace.
President of Mexico tweeted,“Because we are making Mexico a country of equality, today we celebrate for the first time the National Day Against Homophobia.”
In several countries where LGBTQIA people face severe stigma and public persecution, the embassies of many countries, including the United States, Canada, Netherlands, United Kingdom, Spain, Finland, German, and France flew the rainbow flag. (IDAHOT)
Equality is most important to me and because of that, I decided to help the Full Equality Pledge team by doing what I can in Southwest Iowa by donating some of my time to be a team leader.
The Full Equality Pledge began in 2009 with eQualityGiving.org, an association of LGBTQIA major donors that created the first proposal for an omnibus bill, or one-bill strategy for full equality. The concept was even embraced by the 2010 National Equality March that drew over 250,000 people demanding “full federal equality.”
Act On Principles, Get Equal, the AEB Project, Marriage Equality USA, Out4Immigration, and other drafted the Equality Pledge. The document they created contains a list of all existing nondiscrimination laws that protect race, sex, national origin, and religion and calls for sexual orientation and gender identity to be added. It also calls for federal marriage equality, and includes immigration and family leave for same-sex couples.
The Pledge for Full LGBTQIA Equality:
IN ORDER TO FULFILL the promises of life and liberty, and to ensure equal protection of the law as guaranteed by the United States Constitution;
TO PROTECT the inalienable human right to be safe from discrimination based on sexual orientation and gender identity as required by international law and treaty; and
TO END the systemic stigmatization, cease the societal rejection and heal the suffering of lesbian, gay, bisexual, and transgender Americans as mandated by conscience;
WE, the undersigned, pledge our support for the passage of omnibus LGBT equality legislation that grants full non-discrimination protections on the basis of sexual orientation and gender identity equal to those accorded other statuses under existing civil rights and Supreme Court jurisprudence, specifically including:
Public Accommodations (Title II, 1964 Civil Rights Act)
Public Facilities (Title III, 1964 Civil Rights Act)
Federally-Funded Programs (Title VI, 1964 Civil Rights Act)
Employment (Title VII, 1964 Civil Rights Act; 1978 Civil Service Reform Act; 1991 Government Employee Rights Act; 1995 Congressional Accountability Act; 10 U.S.C. Ch. 37)
Housing (Title VIII, 1968 Civil Rights Act, aka the Fair Housing Act)
Federal Marriage Equality (based on gender, sexual orientation)
Immigration, Disability, and Family Leave (Uniting American Families Act (proposed, the Americans with Disabilities Act, and the Family and Medical Leave Act)
We call upon the Congressional LGBT Equality Caucus to lead the way by filing an omnibus LGBT equality bill by July 2014 that includes all of the provisions enumerated above. We further call upon Congress, and all candidates for elected office, to sign, this pledge to pass such omnibus LGBT equality legislation immediately, but no later than 2014 — the 50th anniversary of the 1964 Civil Rights Act — fulfilling both their individual duty and that of the United States government to ensure justice, equality, and the fundamental human rights protections for all Americans.
The Equality Pledge has already received endorsements from over 225 groups from 44 states and the District of Columbia. These groups represent the full array of advocacy, direct action, faith-based, statewide, local, marriage, immigration, pride, transgender/gender-nonconforming, community centers, and other community constituencies.
As a team leader with the Equality Pledge team, I wish to work with local leaders who are our greatest asset to grassroots organizing and to empower the LGBTQIA and allies community to continue to push forward for fairness and equality. It is my hope to work with all advocates to get as many groups as possible to endorse the Equality Pledge and to call on our elected officials to stand up for the rights of all humans.
Our first day of action for the Equality Pledge is on Saturday, May 17, 2014. It is the International Day Against Homophobia and Transphobia. This day of action is going to do two things call for the end of hate and call for full federal equality. The event will be in Omaha, Nebraska at 72 Dodge Street Intersection the northwest corner at 2pm. During and after will be a time to discuss the Equality Pledge, how to get involved, and what to do next. Go here to RSVP: Stop Homophobia/Transphobia! Full Federal Equality NOW! Event
Please join me in standing up for and organizing for Full Federal Equality for our LGBTQIA brothers and sisters.
I was in second grade when I noticed a boy in my class. We would go to his house, play games, and at school, we played a lot together during our lunchtime recess. I really liked him. He always stood up for me against the big bad bullies that made fun of me because of my bad breath at times. He would hug me and tell me, “Don’t cry, I won’t let ’em hurt ya.” At that age, I did not know what being gay was, I didn’t think that I was different or that there was anything wrong. I was just being me and he was my best friend that is all that I saw back then. Not too long later, I moved to Wahoo, and I never talked to him again.
The following year, when I was in third grade, I started hearing the word ‘gay.’ I did not understand, I was too busy playing and being a kid to worry about it. Kids called me gay because I was weak and I did not like what most of the boys liked. I was a bit girly. Nevertheless, I started having these feelings about boys, and just thought that they were normal so I didn’t pay much attention to them. I was not having any sexual thoughts, just friendship, but strong attachment. One day, around the end of the school year, someone called me a fagot. I cried and cried that day after school. I didn’t understand what it meant, but it hurt that people would call me these names. I didn’t have my friend to protect me anymore. I started to feel like I was different but I didn’t know what they thought was bad or wrong about me.
In fourth grade, I discovered what gay was. I started having sexual thoughts about boys in my class. I started to push the feelings away and told myself, “No, it’s wrong to think like that.” I started thinking I was ill, and began to get depressed and didn’t know what to do. I wanted to go back to second grade and be with my friend; he would make the bad things stop, I thought. I started pretending I was sick all the time, so I didn’t have to go to school or so I could leave early to get away from the bullying.
I started fifth grade, my last year of elementary school, at the new school in Wahoo. I was so happy when school started. Everything was so new. I was excited to have a chance to start over. I could lose those feelings; I’d been having for boys. I was hopeful. Unfortunately, as much as I tried not to be me, I could no longer hide it. Somehow, they knew. The bullying became worse. I looked to the teachers to help which they were very reluctant to do. I must be sick, I constantly told myself.
My sophomore year was the worse and best year in Wahoo. I decided I could be ‘normal,’ I worked hard to open up to people and put myself out there. I just wanted to be normal, like everyone else. I decided to try to find a girlfriend. My cousin had a friend who, I also knew and had some things in common. I decided to ask my cousin’s friend to go to homecoming with me at my high school, along with my cousin. We would go as a group. It felt like a safe way to try to belong.
At the dance, we sat the entire night talking about how we thought many of the other students looked so stupid. My cousin and her friend were from Omaha. They went to school at Millard South High School (MSHS). Therefore, I thought they were cool and sophisticated. I thought they would understand someone being gay or bisexual, and thought that maybe it would be safe for me to come out to them.
That same year, on New Year’s Eve, I was with my sister, cousin, and her friend, while we drank that evening, celebrating the promise of the New Year. I told them that I was bisexual and that there was a guy I really liked but thought he would never like me. My cousin and sister said, “Yeah, we know.” My cousin’s friend said nothing but as the evening continued, it became clear that they were all okay with me, despite my declaration. They poked fun a bit, in a loving way, and we continued chatting as we always had. I finally felt like I could be me.
The following day was a new year and I decided to live openly. I began to experience how to live openly and began to understand the pain of being gay in a high school in the United States of America and especially in Nebraska where it was legal to bully a fellow student based on their sexual orientation. To this day, there is no state law banning bullying or harassment based on sexual orientation or gender identity. As an openly ‘gay’ student, I began to experience bullying and harassment in a different way, but I decided I would just have to live with what was thrown at me. At the same time, I was beginning to feel the hurt manifesting from the fact that I really like the boy I told my sister and cousin about. I knew the feelings I had for him would not be returned. I thought he was too perfect. I began to know that gay and bisexual people do not get ‘perfect,’ and knew they never would.
At that point, I decided that I needed to leave the small town that I grew up in. I could no longer deal with the constant harassment and bullying. I became very depressed and didn’t know why. I just came out and learned from my research that I should be feeling better. Coming out always makes things better. Nevertheless, I didn’t feel any better. I was not happy most of my days. I constantly, felt that I would be more comfortable dressing more girly and really liked the idea of panting my nails. I soon began to wear skinny jeans and black nail polish. I knew guys weren’t ‘supposed’ to wear girly cloths or nail polish. However, I wanted to wear those things; they made me feel more comfortable. They also really scared me. I started having problems sleeping and thinking. I became interested in other things, like choir, activism, and acting. In drama class, I learned that I really like to do make up, and act and read the plays. My drama teacher taught me it’s okay to be gay. Since I couldn’t sleep, I started staying up all night practicing for speech competition, reading the poems aloud, allowing the words to connect with my own emotions.
My family and I left Wahoo in 2007, and lived most of that summer in a small subdivision of Omaha. When school started, I moved in with my cousin and her family. I was able to attend school with her at Millard South High School. There I met so many new people. Many people there were accepting of my gender expression. I even met other openly LGBTQIA (lesbian, gay, bisexual, transgender, queer, intersex, and asexual). MSHS was a safer environment for me; I began to open up and became the person who I truly was. MSHS offered so many more learning opportunities than the small town schools I had attended. I was so excited to be able to take part in the German program and really was able to thrive there. I became confident in myself. I even, became somewhat popular, thought I attribute that to the fact that I was openly queer and ‘different.’ Although, there different was good. I might not be ‘normal,’ but I was accepted for what and who I was.
Sadly, as I became more confident and popular, it seemed that my cousin and I began to grow apart. She seemed at times to be a bit upset that I was making many friends in a short time and she had been there for two additional years than me since I only transferred there.
At Millard South High School, students and teachers actually thought something of me; they believed that I was going to do some awesome things in my future. I had a couple teachers who believed in me even when I did not believe in myself. They kept giving me encouragement. They told me to keep fighting for what is right. They encouraged me to go into politics and maybe run for office someday. They believed in me when I really needed someone. I will never forget all that they did for me and I hope I can repay them.
Junior year at Millard Sough High School just flew bye and the next thing I knew I was a senior. I was so scared of what will be in my future but quite excited. I could not wait for the end of the year. I really wanted to move on to college.
During my senior year, I wanted to reintroduce a GSA (Gay-Straight Alliance) club. The last one fell apart a couple years before I transferred to MSHS. After I mentioned my intentions the year before to Mr. Byer, the Activities Director at MSHS, he told me that I had a long process to go through before I could get the club off the ground. Thus, when I decided later that year, after speaking with some other students and several supportive teachers, I went back to Mr. Byer’s office and told him that I wanted to go through the process. That is when he became reluctant to let me start his so-called process. Nevertheless, I was quite persistent, and I he finally caved and told me that I needed to gather at least 50 students names who were interested in joining the club. Instead, I collected almost 300 student’s signatures and about ten teachers to sign a petition asking for Dr. Case, MSHS Principle and Mr. Byer to let me form the GSA club.
About a week later, after I brought the petition to Mr. Byer and Dr. Case, Mr. Byer then requested I provide a sample mission statement, constitution, and by-laws. My next period, I went directly to the computer lab and wrote them all up for him. I went back to Mr. Byer’s office and handed them to him. Of course, he now decided that I needed to fill out an application (which I believed was the only thing I needed to fill out in the first place) and he would have to give it to the school board for their review and approval of the application, he said it could take up to a month for their approval.
Two weeks went by, and I went to his office to see if ‘they’ decided yet. Obviously, they hadn’t and told me that he thought they might not since it is a controversial group. Thus, I decided to agree to wait another week or so and get back with him. Therefore, I went and began my research into what laws protected students and if we had the right to form a club. I found the GSA Network in California, National Center for Lesbian Rights, and the Iowa Pride Network. They helped educate me on the federal Equal Access Act (EAA). According to the EAA, the school cannot deny the formation of my club because the school already has other non-curricular related clubs. MSHS would need to treat the GSA club the same as the Anime or Diversity clubs.
Thus, I brought the law to the attention of Mr. Byer and Dr. Case. Nevertheless, MSHS was not going to follow the EAA; they claimed that I did not understand and tried to explain to me what the EAA ‘said.’ They told me that the law only gives me the right to meet on campus as a club but not give the club the right to use school computers, printers, or make announcements like other clubs. Further, Mr. Byer informed me that I could not form the club but that I could try again next year. Thus, that summer, I contacted the ACLU (American Civil Liberties Union) of Nebraska.
The ACLU documented my complaint and the fact that the school was violating my first amendment rights and the federal Equal Access Act. They told me that they could send the school a letter directing them to allow the formation of the GSA club. They included information regarding the first amendment to the U.S. Constitution, and the federal Equal Access Act. The school responded to them, stating, that they had every intention to let me form the GSA club and that there must be a misunderstanding. Thus, my senior year, I was able to form the GSA. Had Dr. Case and Mr. Byer allowed the formation of the GSA when I first requested, I might never had taken it upon myself to do all of the research to learn about my rights and the EAA. Going through that process, I learned that I was not only okay, but that I had a right to be me. My senior year at MSHS was one of my best and worst years of my life.
My new pride and confidence in myself did not help me at home. My mother and her boyfriend acted as if they hated me. She not only didn’t understand who I was, she seemed not interested in trying to learn. Her boyfriend, who had been living with us since we lived in Wahoo, just wanted me to die. He hated me then and always will. He never told me why and I will never care. They both thought I needed to see a psychologist. On that particular issue, they were right. I was aware; I needed to see someone who could help me understand myself. I had known for years that I was different and my time at MSHS allowed me to develop and embrace certain parts of myself. I knew there were more. I could not figure out why I still felt that a part of me was incomplete.
I began to see a psychologist that year at Boys Town. She was very nice and LGBTQIA friendly. I talked with her about my research on LGBTQIA matters and laws that affected them. I spoke with her about my Advanced Placement Psychology course (which my mother did not help pay for), and the honors German 3 class that I was taking, in addition to my issues at home. She understood that the problems at home were because of my mother and her boyfriend. She understood the problems I was facing related to being queer. The sessions with her, caused me to accept a fact about myself that I had previously been unable to come to terms with. I was finally able to come out as transgender. I had become able to identify the roots of some many of the problems and discovered more about my identity. I learned that I should begin facing those issues. I learned that they only way to overcome the feelings of injustice I had was to continue to fight for my rights, as I had done in high school, the year before.
I finally came out to my mother at one of my sessions I had with her and my psychologist. I remember yelling at her, saying, “well, I am fucking sick of listening to you cry about your problems! We are here about me! I am fucking transgender!” From that day forward, I began coming out to people that I was transgender. That same year, on October 11, 2009, I told the store manager at J.C. Penney where I worked, that I was transgender and from that moment on identify as a female, use female pronouns, and I would appreciate to be addressed as Mika. I also began the process of coming out at school and requesting my teachers to address me the same.
Coming out, as transgender was the hardest task I will ever have to do. It was so difficult because I was so scared; I knew my family didn’t like me because they thought I was queer. I was worried about how my friends at school and work would treat me. I fully expected to be fired from my job. Now, I just wonder why I did not notice that I was transgender sooner. Coming out actually opened my own mind to new possibilities, it helped me finish accepting myself and I was able to improve my work beyond what I thought I could.