Tag: reproductive health

Thank you president Biden

As much  as I  am relieved that we can get past the question,  is Biden too old to serve a 2nd term?  The irony isn’t lost on me there is very much a double standard at play because Donald Trump  is only 3 years younger. After the debate many people and media panicked; Granted president Biden did not have the best night .   I genuinely do think it would be difficult to respond to a pathological liar at any age. 

The reality is I believe ageism and ableism played a key role in the end of the Biden candidacy/ i also think Biden stutter altered public perception negatively.  Joe Biden is a decent man. He came into office at a very difficult time in history and served us well.

 That said,  I very much believe ending mask requirements at  the very least in healthcare settings was a big misstep on the biden administration part. The public emergency has ended. This in  no way means covid is gone.  Covid is airborne and there needs to be more done in terms of prevention, as well as to help those living with long covid. Covid is mass disabling event. I know many would rather say covid is over, because that would be more simple. In reality life and the world we live in is anything but simple.  As a person living with cerebral palsy I don’t have the luxury of pretending covid is over, nor do others living with chronic illnesses. Not to mention the US healthcare system is ill prepared to handle a major global pandemic and the long term after effects that we are currently seeing. I say this as a person who is currently under the care of an infectious disease doctor for antibiotic  resistant urinary tract infections. Just a piece of advice, protect yourself and your loved ones by Wearing a mask.  

I also believe that Biden should no longer be supporting Israel with weapons. I support the people of palestine. Although I realize undoing long-standing alliances is easier said than done. 

With all that said,  I can not support Donald Trump given what he stands for.  He openly mocked a reporter with cerebral palsy. Holds vile attitudes toward women.  He proudly takes responsibility for the overturning of Roe vs. Wade. 

In the 2 years since Roe was overturned I have been  troubled that some in our government feel they have the right to control women’s reproductive rights and healthcare. In part because I have a mild  bleeding disorder that is similar to hemophilia. As a result I experienced menstrual cycles that lasted months at a time. This greatly impacted my quality of life as I also had extremely bad menstrual cramps.  After many years of my doctors doing their best to get my bleeding under control with medications used to treat bleeding disorders, along with oral contraceptives to suppress my period to no avail.

There came a point when my hematologist stated he believed my menstrual cycles were not controllable in part due to my brain injury that caused my cerebral palsy. Stemming  from my premature birth. Knowing full well my underlying brain injury is permanent. I came to the difficult realization something had to give.  Unbeknownst to anyone initially I started doing my own research about what my medical options were online.  At this time I was 14 and knew how to use google.  It was at that point I discovered what a hysterectomy was. Given I was told that my bleeding disorder was genetic and can be passed on. I didn’t like the thought that if I had a daughter, she may experience the difficulties and pain that I was.  I should also mention that during this time my muscle spasms caused cerebral palsy were becoming difficult manage with oral spasticity medications and we were looking into if an implanted medication pump was an option as it is delivered directly into the spinal cord via a implanted spinal catheter as  opposed to going through the bloodstream. It is called a baclofen pump, at age 17 I had my first pump placed.  

 I came to the emotionally challenging conclusion that in my case a hysterectomy was my best option. I sat on it for six months before going to my  mom who had no  idea I knew what was. We then went to my gynecologist who we had been working with closely to get my menstrual cycles controlled,  I shared with her the conclusion i had come to, I had just started a new medication to suppress my period, She asked my to wait another six months and if i was still bleeding she would support my decision to have a hysterectomy.  

There was some reluctants given I was 15 at the time.  Also sadly  there is a dark history in this country of forced sterilizations of people with disabilities. Fortunately my doctors took the time to truly listen to me and realized this wasn’t the case and it truly was a quality of life issue. In 2004 two weeks into my freshman year in high school I had a partial hysterectomy. Only leaving in my ovaries.  At the request of the hospital my mom did have to sign the consent form given was under 18.  Therefore both my and mother’s  signature was on the consent  form.

I share all this because I want all women to have the freedom to make their own choices about their own bodies with their doctors. Our government should have no say when it comes to that. This will not be the case should project 2025 take effect.

I also want all LGBTQ+  people to have access to gender affirming care and to be able to be their authentic selves . 

Joe Biden did a selfless thing on Sunday by stepping aside and endorsing Kamala Harris. Thanks to him we are well on our way to having our first female president. It is up to us to do the rest this november

When someone sees only your disability

When someone sees only your disability

Recently I realized someone I really cared about only sees my disability when he looks at me. It is sad when you get to know people who don’t have a disability: you hope they see all of you as a person. As your disability is only part of you. It is not your authentic being or true core self. People have many different life experiences and aspects to their authentic being. I am many things, Made up of multifaceted parts of my personality

I am a woman who is very concerned about what is happening in this country when it comes to roe vs wade . I never thought in this country we would regress so far and what had been settled law since 1973. Giving women the right to have safe access to abortion. Is now no longer a legally protected right In at least 13 states woman are no longer able to safely to access abortion at any point in a pregnancy Even when a mothers life becomes at risk or in the instances of pregnancy loss doctors can no longer perform D&C ‘s to clean out the lining of a womans uterus if after a pregnancy loss which is an essential part of reproductive care to prevent sepsis if any tissue of the nonvible fetus remains this puts womens lives at risk . There many life circumstances that lead woman to the difficult decision to end a pregnancy extreme poverty, the pregnancy is a result of rape or incest, no woman who has indured such a trauma should ever be forced to carry a child against her will. This is also true for women in abusive relationships as a pregnancy has the potential to to cause the violence to escalate at the hands of the abuser.

It is also important  to say there are also times when wanted pregnancies are found to have abnormalities that are incompatible with human life and the difficult decision is made to terminate the pregnancy. Some people would like to wrap things in a neat and tidy little bow and life is not that simple.

I myself  as a teenager had challenges in regards to my reproductive health as I had difficulties with my menstrual cycles as they were very prolonged. After some  investigation  on the part of my gynecologist it was realized  I had a condition called von willebrand’s disease. It is a mild form of hemophilia. I was 13 at the time my von willebrand’s  was discovered. By that time I had struggled  with my menstrual  cycles for three years as I started my periods at age ten.  In spite of my von willebrand’s being mild my periods continued to be very problematic to my quality of life. Being that I would bleed for months at a time, in spite of being on medication for the von willebrand’s and oral contraceptive to regulate my cycles.

At age 14 it was discovered I had underactive thyroid and primary pituitary failure that was a result of my brain injury, the same injury that caused my cerebral palsy as I was born at 32 weeks. During this time the issue of my pituitary was discovered I began to suffer migraine headaches. After completing an mri my doctor became concerned I could have a small tumor at the base of my pituitary gland.

It was shortly after this discovery that I remember a notable conversation with my hematologist that changed everything in my mind in ways that no one knew  not even my mother knew til later. He said my pituitary issue and von wiliebrands were like the perfect storm if it wasn’t for my brain injury my periods would become more manageable given my von williebrand’s was such a mild case.  I should say I by the time my von williebrand’s was discovered I would have had around 10 or 11 surgeries with no sign of any bleeding issues it was only discovered after specialized testing was performed. So it made perfect sense to me that my brain injury is what had made my periods impossible to control.

  It was at this time unbeknownst to my mother I started to Google what my medical options were In terms of managing the bleeding as a was starting to realize I couldn’t not continue to live with the bleeding the way it was. particularly because my muscles spasticity was beginning to also worsen during this time and oral medication were becoming less effective. Von willebrand’s disease is a genetic disorder and there was a 50% chance I could pass on the von willebrand’s to any children I may have this coupled with the concern for what happened if I did get pregnant not just to my health but also the health of my unborn baby I didn’t feel comfortable with the idea that my child may have to endure the medical things that I had. I always tried to make the best of it but there is no denying it took a physical and emotional toll on me. It was at age 14 I realized children weren’t in the cards. This wasn’t an easy decision to come to for me as I have always loved children: I was aware there was other ways  to be around and help children. Although I wasn’t sure what that would look like for me yet.        

Meanwhile I continued my Google searches unbeknownst to anyone. It was during one of these searches I first discovered what a hysterectomy was. Being fully aware it was permanent I sat on it for about two or three months, before I went to my mother and told her about my Google searches and my coming to the conclusion children were not in the cards for me. I also stated at that time if push came to shove I was more than willing to have a hysterectomy. As I realized the toll on my physical and mental health was becoming too great for me to bear, and intervention was very much necessary to protect my quality of life. Needless to say she was stunned. It was shortly after this I had a visit with my gynecologist I brought up my conversation with my mother and hysterectomy being an option for me. After some discussion my gynecologist asked me to wait 6 more months as she had just started me on the Depo-Provera shot to try to stop me bleeding and It can take up to six months for menstrual cycles to settle after changing medication. If I still was miserable and wanted to have a hysterectomy she would support my decision and perform it.

I wanted to stress that my gynecologist got to know me well over a one or two year period. She was also  very aware I was struggling with my spasticity. I was considering the option of having a baclofen pump put in to better control my spasticity. My physical medicine and rehabilitation doctor was nervous  about doing so given my history of seizures as well as the other major risks the pump carried. The pump does very much carry life threatening risks. Around that same time I began to  experience abdominal spasms that my Pm&r doctor was concerned were brought on by an ovarian cyst that was being overlooked. He wanted me to have a consultation with  the gynecological specialist at the hospital as he was hoping they would do a laparoscopy to check for a cyst.

So a month or two later myself, and both my mom and dad went to see the specialist as he had asked. It was clear from the get go however they were concerned I was doctor shopping for someone to do the hysterectomy which wasn’t the case. Granted I do take into account they were concerns given my age. There was the reality that there was a dark time in American history when the disabled were sterilized against their will, which is not at all ok. Having said that, I was in no way forced into considering a hysterectomy and there was also the fact that I had been bleeding for close to six  months  by the time I came to see them. And in the bigger I had struggled with my menstrual cycles for nearly 5 years. Which weirdly they seemed to gloss over as if it were nothing significant. We left with them saying I shouldn’t make any reproductive decisions until I was 21, they also  did not want to perform a laparoscopy which is the whole reason my pm&r  doctor sent us to see the specialist. He himself later apologized for sending us there. Saying I thought they would help you.

A short time later I had a follow up with my gynecologist and we shared what had happened. She agreed to do the laparoscopy to ensure that nothing was being overlooked. It was scheduled for a month or so later. I didn’t have an ovarian cyst in fact my reproductive organs looked perfect. It was realized that my abdominal muscles did not relax under full body anesthesia and my gynecologist had no doubt how much pain and discomfort I was experiencing due to my spasticity. It was apparent that we would need to investigate whether the baclofen pump was a realistic option for me more seriously. A few weeks after my laparoscopy I had a follow up appointment with my gynecologist, By that time I had been on Depo-Provera for six months with no improvement in my bleeding. So after much discussion it was decided I would indeed have a hysterectomy, so two weeks into my freshman year of high school I had the surgery when I was 15. At the time I had been on my period for 8 and a half months.That was over 18 years ago.

As difficult as that decision was, it was the right choice for me. Particularly given what I have dealt with in my adulthood having lost a father to suicide in 2012, my great grandfather also died by suicide,  Given this am grateful I am that my gynecologist took the time to  get to me and respect my right as woman to make decisions about my own body. Being that we are dealing so much in our culture and so many children are struggling I would much  rather give my time and attention to a child who is already  here in the ways that I can rather than bring one  into the world. It my hope that we do all we can as a society to protect a woman’s right to choose.

Final thought when you meet a person who lives with a disability stop to realize that their disability is only one part of their identity as we as people are made up of many intersectional identities.