God’s Plan for My Life, My Politics, and My Health

tagline1Yes, I am a Christian and soon I will be joining the United Methodist Church (UMC) and will be joining the congregation at Broadway United Methodist Church in Council Bluffs, Iowa. With that said, I believe that God has a plan for my life, my politics, and my health. I believe that he put me on this journey for a reason. I better understand why I am going on this path and that it is with his guidance. I believe that his reason for putting me on this journey because he wants me to encourage others to stand up, speak out, and take care of each other who has less then us.

I believe that it was God’s plan for me to go through so many challenges to make me stronger. I believe that it was him who gave me the power to be able to speak out for myself. Which, lead to me speaking out against the discrimination, harassment, and bullying I faced in high school over my gender identity, and that led to me re-starting the Gay Straight Alliance at my high school which is still thriving. I believe it was him who gave me the strength to start Forward Equality back in 2010.

US-News-rankings-2013I believe that it was God’s plan for me not to get my kidney transplant at the University of Nebraska Medical Center (UNMC) Nebraska Medical Center so that I would go to the University of Iowa Hospital and Clinics (UIHC) and meet the great people of Council Bluffs, Iowa. In doing this, I got the wonderful opportunity to work (non-paid) on the Barack Obama re-election campaign, which taught me a lot in political campaigning. This created the opportunity for me to meet some truly amazing people in Council Bluffs, including Michele Lendt, Nancy Flores, Diane, Bob, Tom Dean, Connie Lairmore, Sue Hendricks, Linda Nelson, Chad Hannan, Melissa Head, Mike Gronstal, Leonard Boswell and many more. Living in Council Bluffs, gave me many great opportunities to learn and expand my knowledge to better work for my political goals of workers’ rights, healthcare for all, civil rights, adoption for all families, and safe schools. 

cystinosis_research_foundation_partnerI believe he gave me the courage to continue to fight for my life and to keep my head up while dealing with my illness, Cystinosis and all the crap it throws at me. I believe he is the reason my family had me participate in the clinical trial at the National Institutes of Health (NIH) in Bethesda, Maryland with Dr. William A. Gahl. That trial has lead to better understanding of the effects of Cystinosis and the U.S. Food and Drug Administration (FDA) approving the Cysteaminie eye drops which help reduce the formation of crystals on the corneas of my eyes. He gave me strength to keep fighting when I went into kidney failure and when things were quite difficult. He gave me the strength to not give up when it seemed hopeless. He continues to give me the strength to stay in the clinical trial at the NIH and help make lives better for future generations of kids with Cystinosis.

Pre-op with family
Pre-op with family

I believe it was God’s plan that Jon von Kampen donate his kidney to me. I believe this because how close of a match he was and because of how great my body has accepted his kidney. Here are my most recent lab results: Platelet Count 184, WBC (White Blood Cell) 7.2, Hemoglobin 13.7, Creatinine 0.8, BUN (Blood Urea Nitrogen) 10, CO2 23, Potassium 3.8. I am doing so well that the U of Iowa transplant team has lowed my dose of anti-rejection medications and has even cut one of my medications out of my regime.

I believe it was God’s plan to have me work to end oppression and stand up for those who have less then others. I believe it is his hand that leads me down the road into my field of politics, and my passion for medicine and wishing to help others with illnesses find the greatest healthcare professionals to help them.

With that said, I feel grateful to the Pottawatomie County Democratic Chair Linda Nelson for inviting me to speak at the Pott. County Women’s Dem lunch on December 2nd to speak about my story, my illness, and Forward Equality. 

Jon and me after our surgeries!
Jon and me after our surgeries!
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What Next!?

It has been several weeks since I received the new kidney and a couple weeks since I had the Peritoneal Dialysis Catheter removed. I lately have been having a difficult time. It is hard to explain for me. But, my life begins a new, because I am no longer sick from the kidney failure and I am not needing to do dialysis every night with the PD cycler. I still have many great responsibilities with my post-transplant care from doing my vitals every day to going to the hospital twice a week for labs to making sure my immune-suppressants (anti-rejection) are taken at the right times, and finally, to dealing with all of the side effects from these medications.

This does not even come close to covering everything that has been going on. In addition, I am struggling with where I go next. I mean from November 22, 2010 I started this journey to kidney transplantation.  From that moment on I was only figuring out how to survive not really living but just struggling to survive. I had to fight to get medical coverage again because that year I turned 19 years old and Nebraska Medicaid dropped me.  I knew that the Affordable Care Act had passed and that would prevent some of the discrimination I would face of having a pre-exciting condition. But, I had no income to buy insurance and I could not work because of the side effects of End Stage Renal Failure.  Thus, I did a lot of research into what happens now that the Affordable Care Act had passed and how I could get back on Medicaid because I knew that since I was not living at home and my family was not providing any food or shelter for me that I should not be considered a dependent. Thus, I finally figured out that I could file for disability and get on Medicare. I did that and won the case and soon got a Nephrologist just a couple months before I had to start dialysis.

Then once, I finally had insurance, a lot came at me at once. I was getting sick all the time. I was on hemodialysis which made me sick too because the doctors were not experienced in Cystinosis and would not listen to me when I told that they my kidneys were still taking fluid off of my blood so do not take more than 1 kg off my blood. Most days they would not listen to me and they would dehydrate me almost every time I did dialysis which messed up my body. I now have this heart issue that seems to not get better that causes my pulse to run high when I am even at rest.

During this time I did not have much family support. I really only relied on myself to get everything done. Which made things more difficult but I became more and more resilient to all of the obstacles I was facing. Then I did a lot of work to try to get a kidney transplant and went through the UNMC Lied Transplant Center which did not work out.

Finally, I move to Council Bluffs, Iowa to work for President Barack Obama on his re-election campaign and started the search again for a kidney donor and to get on the transplant list at the University of Iowa Hospital and Clinics, where I finally was accepted and placed on their list.  And as you all know this year on May 30th I finally received the kidney and am living again.

So, here I am. Now, where do I go? What is next? What should I do?

I don’t remember what it is to just live without there being a struggle. But, I guess I am still struggling to live openly and fulling. I guess that would be because I am still unable to work and make a living because if I do get a job or a good one that is, I will lose some if not all of my medical insurance and right now there really isn’t many insurances that will cover everything I need. Because for instance my medications alone in a month cost over $3,000.  I would love to go back to school t0 finish getting a degree in Political Science and Psychology but there again is another struggle because Iowa Western Community College did not want to give me a medical incomplete when I started the hemodialysis and instead gave me an F so I lost my pell grant and cannot afford to pay that off. Not to mention the problems I had with trying to live on campus. They did not wish to let me because of my gender status of being in between genders.

Again, here I am, where do I go? What is next? What should I do?

I really don’t know how to answer those questions. I have many conflicting feelings and thoughts about what to do now. I know my physical life is much better and now I am not just surviving I am living again. I will soon be able to do many of the things I could not do and had to give up for the past 3 years. Such as, taking a bath, swimming, lifting more than 20 lbs, I can travel without tubes or dialysis.

I realize that this is a new beginning. But again, where do I start, what do I do?

Thank you for listening to my troubles. I know that there are many others in other parts of the world that don’t have these troubles. But you know,  I feel that after all the struggles I have been through, from growing up being taught that you are one gender when you really aren’t to being  so liberal minded, from not having a home, not having family support. I believe I deserve to be able to just live and not have to worry about these things that I have had to face before I was even out of high school.

Well, here I go. With the help of the support I do have now, I will move Forward!

(Sorry no pictures this time)

Queer Goes to the NIH!!

Me in the hospital because of getting really sick with my good friend Nancy!!

Today I will be leaving for Bethesda, Maryland to go to the National Institutes of Health (NIH). I am going to the NIH because I am in a clinical research trial for my Cystinosis. We are working on a cure and better treatment for Cystinosis. I will be at the NIH through Wednesday October 17. While there, I will have almost a full work up. I will have some bloodwork, Echocardiogram, Pulmonary Function Test, Ultrasound of my kidneys, Dental exam, EKG, and Eye checkup. On the last day of the visit, I will meet with Dr. William A. Gahl and his research team.

National Institutes of Health (NIH)

I have been seeing Dr. Gahl from since I can remember. I have basically grown up at the NIH. Some of their nurses have taken care of me from when I was a binky baby to now being a 21-year-old person. So many memories there. Some of them are some really awesome memories and some of them are not so much. See the last time I was there I got the news that I would need to get a kidney transplant and this year I am worried what I will hear. Nevertheless, I know that there must be something negative because I am in the final stage of Cystinosis but yes, it is the longest stage depending on how well your medical team and support teams are and how compliant you are as a patient.

University of Iowa Medical Center

Well, I have been a compliant patient but there was a period that I did not have insurance to cover my medications and so I did not get the medications that I need for almost a year that would help prevent the illness getting worse. Now, I could have had my kidney transplant a year ago but I face discrimination based on my gender identity at the UNMC Transplant Center in Nebraska. Therefore, I am now working to try to get the transplant done this winter at the University of Iowa Medical Center.

So anyways, I happen to be very nervous for this trip that I am actually having an anxiety attack worrying about that will happen while I am there and if they will tell me some really bad news. So please everyone please keep me in your prayers, thoughts, and send me some positive energy. Thank you so much!

Voting while Genderqueer in Iowa

My last blog was about trying to vote in Iowa and this is the second part to that story.

Ok so this week Diane and I went to the County Auditor’s office to find out what is going on with the letter I got telling me that I need to bring in an Iowa state issued photo ID or passport and if I don’t have those that I would need to bring in two letters proving my address. Well we get there and show them the letter and the women who looked at said that she didn’t think this would have come from that office because she doesn’t recognize it. Then they pull up me on the computer to see what the problem was and they immediately go straight to the gender thing and say well no wonder my daughter has that problem too and her name is Mickyla. Therefore, Diane and I clear that up and say that I am still a male legally that is. Then she does some typing the computer and tells us, “no wonder your social security number is wrong.” And that we must of wrote it wrong when we filled out the forms. Then they ask for my social security card and ID to take photocopies of them and the letters so that they can get it all fixed and they told me that I could now mail in my ballot when I feel like it and my vote will be counted. Nevertheless, we will have no proof that everything is fixed and that they will actually count my ballot.

It is some of our beliefs that the Republicans are trying to contest people’s voter status to maybe win the state since it looks like it will go for Obama this year.  There are many reasons for this and the first is that when I first talked to the County Auditor’s office they again immediately went to the whole gender thing being wrong not that the actual social security number being wrong. Then I get the letter that looks like it could be a fake and then when I go to the office they again go straight to the gender thing and then finally state the actual social security number is wrong instead. Overall it kind of felt like they were covering up for someone.

This really makes me wonder how many genderqueer, transgender, Latino, poor, and elderly people are going throw this same thing in the state of Iowa and in other states that the Republicans are scared of losing.

Here’s the letter from the County Auditor’s office:

Now if you look at this letter they do not give a reason why they need this information. Please note that it also says, “If you have any questions, please call the auditor’s office at…..” THERE IS NO NUMBER!!

In addition, please explain to me why the are fucking sending out ballots to people with social security numbers that do not mater the name of the person!!

 

 

Queer Goes to VOTE!!!

I moved to Iowa and in June I registered to vote. I thought it would be easy because I was taught that it would be while I was a Sumner Organizer for the Obama Camp!

Well that’s not how it would be for me of course! So, it starts here when I get this letter from the County Elections person saying that my social security was incorrect and that I should call her. Well, I call her and she says well the problem here is that it says you’re a male. I am like okay and?? She was like well aren’t you a female. I tell her no I am still legally a male. She then seems suspicious and is like well you sound like a girl. So now, I am getting very annoyed with this person and I feel like swearing her out but I don’t and I calmly explain to her my gender and how I am still legally a male and guess what that was all the “problem” was.

Well that wasn’t not the end of this shit. Recently, I get my ballot and I fill it out and get ready to send it in but then the next day I get a new letter from the elections person telling me that my voter registration status is “Pending” and that I need to know prove where I live by either showing them an Iowa state issued Photo ID with the current name and address and if I don’t got that I would need to send in a copy of two letters proving my address.

So basically this brings up several questions to me. First, why the fuck do they know I do not identify as male!!? Second why am I needing to prove where I live while several state offices already have my address!!? Oh and that includes the federal government.

So I believe that we got some for real voter suppression going on here in Iowa!! Seriously, what the fuck are the reasons for this shit!

Another thing I have to talk about is this business of my sex according to my driver’s license and birth certificate. Okay, I know it says I am a male. Now please let’s move forward and realize that doesn’t not change the way I identify and it does not change the fact that I do not look like a male and I personally belief there is no reason we cannot recognize my actual gender which is genderqueer!!