50: What I have learned since switching to reusable menstrual products

I have to start this off with a warning. I’m about to talk about menstruation. I’m going to be very open and honest. If you have a problem with that then you probably should not read on.

It has been about eight months since I switched to using cloth menstrual pads. I made the decision based on the way my skin was reacting to disposable pads. I was experiencing unusually long periods due to a hormone imbalance which meant that I was exposed to disposable pads for longer than the usual amount of time. I come from a family of escema sufferers and sensitive skin is just a given for us. A lot of products can give my mother, my sister, and myself, a rash. I am the luckiest of the bunch with the least sensitive skin but after sometimes weeks of using chemically treated disposable pads my skin was not happy.

I had been researching reusable menstrual products for a few years because I knew that my sister was having a similar problem and switched to a menstrual cup (similar to the commonly known Diva Cup). I have never been a fan of using internal menstrual products such as tampons, my personal preference is external protection, so a cup was not a good option for me. Coincidentally around the time I was starting to seriously consider swapping to a less irritating product, i had began teaching myself how to sew. My grandmother had passed away a few months prior and I was sewing as a way to feel connected to her. She bought me a sewing machine for my eighteenth birthday which had barely been used since, although it’s getting plenty of use now.

It only took a couple of YouTube videos before I figured it wouldn’t be too hard to make my own cloth pads. The first one I made was constructed from an old T-shirt and a face washing towel cut and layered to fit. I had sewed it by hand which made it less structurally sound than is ideal but it did the job. I was inspired to make more.

I’ve now made over a hundred cloth pads in various styles and different fabrics. I’ve become much better at sewing and now know my sewing machine like the back of my hand. My sister and a family friend have received sets of the pads from me but I don’t think I will sell them to the public.

I now use cloth pads exclusively. My cycle is much more comfortable and I don’t break out in a rash from the chemicals in disposable products anymore. I find myself excited to get my period for the first time in my life. I love the patterns and how comfortable the cloth is. Yet I still hesitate to tell people that I make pads and it’s even more intimidating to let people know I actually use them. I expect that people will think they’re “disgusting” or “unhygienic”. My husband is surprisingly supportive of my choice. My family know about my project and I’m now known as the “green” one for wanting to avoid chemicals and reduce my waste production. The few friends I’ve talked to about it have been accepting of my choice to my surprise. I’m sure I will get mixed reactions when this goes up however.

The thing I have noticed the most is that people are more comfortable talking about menstruation than you would first expect. Using cloth pads has made me much more comfortable with my body and my period. In the end it is a normal occurrence, yet I spent so many years ashamed and confused. I was uncomfortable with my own bodily functions. I am so grateful that cloth pads have changed my life and my outlook. If anyone is reading this because they’re considering the switch. I would definitely recommend trying it. If you’re reading this and you’re finding yourself repulsed… that’s your viewpoint and I respect that.

Huntington’s Disease Blog 3: Information is Liberating

Before I had my genetic testing to see if I had Huntington’s Disease I had some very definite ideas of how my life was going to play out. I was seven when I found out about the Huntington’s disease in our family. I was just old enough to have experienced the death of a pet and to understand that people sometimes get sick and they definitely get old. Memories were a new idea and I was just learning to control my lanky young body to jump, run and climb without resulting in grazed knees and bruised elbows. My comprehension of Huntington’s disease at that age was external. I wasn’t grown enough or smart enough to imagine my own existence being in any kind of jeopardy. I knew my grandfather was ill and we were moving to be closer to him and that one day mum would be sick in the same way.

I wrote a diary entry the night before we officially moved. I only ever kept a diary when I felt most like being dramatic and in this particular diary I expressed my disappointment in moving again. I had changed schools before, this would be my fourth, but I didn’t want to move so far away. Although I was glad to be moving to where both sets of my grandparents lived. At that time this seemed to be the only way Huntington’s disease affected my life. I did write in that same entry that I too could have Huntington’s like my mother and grandfather before me. I never wrote in that diary again.

My mother had her tubes tied not too long after discovering she was gene positive. My sister and I were aware of this even at such a young age and we grew up knowing that our mother would never have any more children because she did not want to consciously put them at risk. We were born before anyone was aware that there was HD in the family. Our mother didn’t deliberately have children knowing we would have a 50% chance of inheriting the condition. This influenced my own thoughts on having children if I were to find out that I too was gene positive. It was made very clear to me that I should seriously consider all the options and consequences before I decided to have children. I needed to be aware of what it would mean to have children before I found out whether or not I had the genetic mutation.

Many people do not undergo genetic screening and this seems so bizarre to me because for me there was never any other option. I always knew that I would get tested. I also knew that I couldn’t allow myself to have children before I at least knew whether or not I carried the gene. It was impressed upon me the importance of not putting my children into the place my sister and I accidentally were. I was made aware from the beginning that if my sister and I did not have the Huntington’s disease gene then the disease would die out in our family. I vowed early on that I too should get my tubes tied if I was to find out I was gene positive so that I would never accidentally pass on the gene.

I also needed to know if I had the Huntington’s disease gene so I could plan for my future. When I was eleven my family moved again. This time we moved states, more than 8 hours south of where I grew up. We moved to an area where house and land prices were significantly cheaper so that my parents could buy a house and settle down before my mother became symptomatic. My mother had remarried the year before and our stepfather has become a second father to my sister and I. Both my mother and stepfather found jobs in the area and I started my first year of highschool. I understood why we had moved so far from my comfort zone. I was wary of how I might have to do the same one day to secure my future when I became ill.

I told myself not to get my hopes up or make plans because my life would be cut short. I knew not to pick a career path that I couldn’t continue to do if I started to develop movements or if my memory began to deteriorate. I knew early retirement was inevitable if I did have HD. I was convinced that I knew deep down that I would be gene positive. But nothing was certain until I was tested and I had to wait until I was eighteen years old. Our mother has to travel three hours away from her home to the state capital to have specialist appointments regarding her HD. When my sister and I were much younger we would go with our parents to the city and met some of her doctors. During one of these visits when I was about fifteen I asked if I would choose to be tested if I were allowed to at that age. I said yes. I felt as though I was in limbo, putting my life on hold as I didn’t want to make any decisions about my future until I knew what kind of future I could have.

I’m not sure if it would have been better if I have been tested at a younger age. Knowing now that I do not have the Huntington’s disease gene I suppose it would have been better to have known. I wish that I had known that I don’t have HD from the beginning. In hindsight I wish I had known this when I was seven and that when my mother announced to us that our grandfather was sick and she would be too that she could have told me that I didn’t have to worry. I wonder what that would have been like? To spend my life seeing HD as something that my family suffered from but that I wouldn’t be affected by. But instead I spent the next twelve years wondering whether or not what my grandfather and my mother were going through would some day happen to me. I wondered if I would ever be able to have children of my own without medical interference. I told myself every muscle spasm was a taste of what my life would later be like. If I had known what I do now then I would have saved so much time. I would have worried less and planned bigger and better things.

It is easy to say now that I wish I had known at fifteen but what if my results weren’t what they are? I don’t know how I would have reacted if I had found out I had Huntington’s disease at fifteen. I would like to think I would have handled it well as I really would have liked to have known back then. I spent years telling myself I had the gene in the hopes that if I found out it were true I would have prepared myself. I thought if I prepared for he worst then I would be pleasantly surprised or I would be properly braced. The hardest part was waiting so long. When I did find out my results I felt I had wasted so much time worrying. I don’t know how I would have coped if I had never found out at all. I can’t imagine waiting any longer than I did to relieve myself. It was pretty scary thinking that I might have HD but it was worse not knowing. I’m so lucky that I live in Australia where we have such an amazing health care system and I didn’t have to pay for my testing myself. I needed to know even if the news was bad. I couldn’t spend any more my life not knowing.

 

Read Huntington’s Disease Blog 1

Read Huntington’s Disease Blog 2

Huntington’s Disease Blog 2: Being Negative Isn’t Always A Bad Thing.

If you haven’t read my previous blog about Huntington’s Disease then you definitely should before you read this.

I want to make it clear that this isn’t the easiest thing to write about. For as long as I can remember knowing that we had Huntington’s Disease in the family I was convinced that I would be gene positive. I have been told that this is a normal reaction and that everybody has some sort of gut feeling one way or the other. I found out my mother had Huntington’s when I was seven years old. I had genetic testing when I was 20 years old. It’s required that you be eighteen and consenting to have the genetic testing done here in Australia. I had to wait over a decade before I could find out if I would have this awful genetic condition just like my mother and my grandfather.

It is heavily suggested that you take someone with you as you go through the testing process. When my mother got tested she took a friend and had the test done at Westmead Children’s Hospital in Sydney. When I was tested I was living with my ex at the time so he came with me to The Royal Children’s Hospital in Melbourne. The test is pretty straight forward. It’s a blood test, then science happens, then six weeks later you find out whether or not you have the Huntington’s gene. Your genes are like a code and if you have the Huntington’s gene it means that one line of your code is repeated too many times. A normal person has 35 or less repeats of this bit of this genetic code. If you have the Huntington’s gene it means that you have 36 or more repeats of this code. They say that 36-39 repeats is a bit of a grey area and sometimes these people won’t develop Huntington’s disease but technically still have the gene. My mother had 46 repeats. My grandfather had 40.

Before you can have the test done they ask you a lot of questions to make sure you understand what Huntington’s Disease is and find out whether or not you could handle finding out your results. It takes six weeks for the test results to come back and in that time they usually require you to check in a couple of times with a counselor, which I did over the phone because I live rurally and couldn’t drive the three hours to Melbourne. Six weeks later I traveled back down to the Children’s Hospital to find out my results. We have met a lot of people who choose not to tell their children about HD until after their children become adults or the affected parent becomes symptomatic. I couldn’t even imagine having lived a life not knowing about Huntington’s Disease. When I went to my initial appointment at the Children’s Hospital I met with a genetic counselor and my mother’s doctor who both knew that I had been contemplating this decision since I was a small child.

I381476_4855369462114_392174528_n had to wait over an hour for my blood test, surrounded by sick children and their families who were also waiting at pathology. One child was dressed at bat-man and my ex amused himself by putting on a voice and trying to convince the child that he was the real bat-man. I’m not a fan on needles. The room where I had my blood drawn was decorated for children yet my nurse wasn’t as nice as you would expect. They gave me a Winnie the Pooh band aid.

The best thing about the Children’s Hospital is that they have meerkats. The jungle gyms and children’s toys aren’t much help when it comes to distracting a nervous adult. Meerkats however did the job quite nicely. The first time I went to the hospital the area was crowded with children so I avoided going to see the meerkats. Six weeks later when I went to find out my results we arrived at the hospital early and I finally got to see the meerkats. I have discovered that meerkats are a nice distraction unless your future hangs in the balance and you have been waiting thirteen years.

I met with the genetic counselor. No body in the room knew my results. The counselor pulled out a sealed envelop and passed it to me. I hesitated and she offered to read it to me. I opened the envelop. There were multiple pieces of paper. One detailing my repeats and one that read “The DNA test did not detect the gene expansion typically seen in Huntington’s Disease. This means that Huntington’s Disease has NOT been inherited”. I don’t really remember what happened next. I probably cried. I know I was silent. I was numb for a couple of days afterward. I left the hospital and we drove home in mostly silence. I didn’t ring my parents, I wanted to tell them in person. This was probably a mistake because it led them to believe that I had received bad news. It’s difficult to explain how I felt. Everyone was happy for me. I felt numb. It still feels a bit surreal.

Since we were children my sister and I had decided that if we had the gene we would do our best not to pass it on. There are a few options for people who don’t want to pass on the HD gene. You can go through IVF and test the embryos for the gene, choosing to only implant the gene negative embryos. It’s a hard decision to make. I always said that if I found out I was gene positive I would have my tubes tied. My sister mentioned adoption for a while but that is her decision to make when she is finally of an age to be tested. When I found out I was gene negative the first thing running through my mind was the knowledge that I could now have children. I can have children without worrying if I will pass this genetic condition on. The second thing to hit me was the realization that my family isn’t out of the woods. My mother still has Huntington’s Disease. My sister can’t be tested yet and still has the dark cloud of a 50% chance lingering over her. I am told they call this survivor’s guilt.

For weeks after I discovered I did not have HD I went through a strange depressive state. I had spent the last thirteen years completely convinced that I had HD. This belief had affected everything I chose to do. I didn’t go to uni. I had tried not to consider jobs that I wouldn’t be able to continue doing once I became symptomatic. I am a natural nurturer and have known I wanted children since my sister was born when I was four years old but I had told myself that I should not have children. My negative result changed the way I viewed my life. I felt that if I told myself I had HD then I would be better prepared when I found out. I felt it was better to expect the worst and be relieved than to live in denial and have bad news. I’m not sure now that this was the right way. I was taken by surprise when I found out I didn’t have HD. Some people take this as me being ungrateful. I feel like it is possible to be in denial of good news. I took a long time for my results to sink in.

My whole life I have had to explain the Huntington’s to my friends. I don’t resent this, I feel like it is the right thing to do and that it is good to try to spread awareness. When I started dating I knew that it was important to inform my boyfriend at the time that HD was a possibility. If it was hard for myself trying to live my life not knowing then it must have been hard for my boyfriends to decide if this was a risk they were willing to take. When you are young it is hard to think about being with someone for the rest of your life and when you add such a heavy subject as a genetic illness into the mix it puts a lot of pressure on the future of the young relationship. I was very conscious about not getting pregnant accidentally, I refused to risk passing HD to my children, teen pregnancy was not an option for me.

My fiance is the first person that I have dated who I could honestly tell that I did not have HD. I feel like this helped me to process the fact myself at the same time. Telling my fiance that HD is something that runs in my family but not in my own blood was a strange feeling. I was so used to this Schrodinger’s cat like scenario where I was living my life in limbo not knowing if I was gene negative or positive. I am still trying to process that I am not trapped by time, my life won’t be cut short by Huntington’s. It’s been hard. It’s very strange. My mother still suffers from HD every day. It might be a while until we find out whether or not my sister carries the gene. I hold onto the hope that she is as lucky as I am. It’s a flip of a coin and there is no way of knowing how it will land. But for now I know that I do not have Huntington’s disease.

Huntington’s Disease Blog 1: HD Doesn’t Always Mean High Definition.

My mother has a genetic condition called Huntington’s Disease.

This is obviously a complicated issue and I wasn’t sure about how I should go about explaining this. I grew up in an environment where we talked openly about Huntington’s Disease but I am aware that some families aren’t as open as mine and don’t like to discuss such heavy subjects. I worry that because I was raised talking about this illness so much that I might come across as too casual and this might offend people. I want to be clear that before I start I am, as always, just recounting my experience in a very honest and raw manner. I have decided to talk about this in my blog the same way I would go about discussing it with my friends.

If you are curious and would like more information or would like to read a more scientific explanation of the condition please follow some of these links.

The Huntington’s Disease Association of NSW

Huntington’s Victoria (my state’s association)

Huntington’s Disease Society of America

The Huntington’s Disease Association UK

When I explain HD (Huntington’s Disease) to my friends I say that HD is a genetic degenerative neurological disorder. Which usually gets a confused or inquisitive response. I then go on to explain what all of that means and how it relates to my life. HD is genetic and is passed from parent to child but doesn’t skip a generation. Only my mother has HD so my sister and I had a 50/50 chance (each) of inheriting it. My mother inherited HD from her father and is the only one of her siblings to have the gene. This means that if my sister and I do not have HD (and do not procreate with someone who has the gene) then it will die out in our family. If you do inherit the gene you will develop symptoms eventually.

HD changes a particular protein in your body, called huntingtin, which everyone has normally. The way my mother explains this is that the mutated form of the huntingtin protein eats away at the brain leaving gaps that never heal. There are three main ways that HD affects someone. It affects your motor skills, your cognitive ability and emotions. This means that people with HD have problems with involuntary movements, mood-swings, memory, judgement and other bodily functions. Obviously there are more symptoms but those are the basics.

The gene itself was discovered in 1993 the same year I was born. When I was about 7 my family discovered HD. My perception of these events is probably slightly askew based on my age. I remember my mother told me when she found out she had the gene so our family probably knew a little while before. My mother is one of five girls who were all tested. My mother is the youngest and the only one who inherited the gene. I remember being slightly disinterested and staring at the ceiling. I remember that we were living in the same house my sister and I had the chicken pox in but I can’t be sure whether or not it was the same year. I remember being told that my grandfather was “sick” and that we moved up the coast to live closer to him that same year. My parents were recently divorced.

My grandfather lived several more years. He died of an aneurysm two months before my mother’s remarriage in 2004. I don’t remember my grandfather being sick which i am grateful for. He didn’t have a funeral. He was cremated and his ashes were scattered. Some people like to remember the date someone passed away but my mother likes to remember my grandfather’s birthday instead. The only symptoms I remember my grandfather presenting was movement based. I was only a child and almost everything I know about him I learned from my mother who was very close to her father. I do know that he liked minties and that he donated his brain to science.

My mother also likes to contribute to Huntington’s research and awareness. When I was in high school my mother did talks at a few schools in the area. She was always good at explaining medical matters and is especially good with children. Before my mother became symptomatic she participated in many research activities conducted by the genetics clinic at Westmead Hospital in Sydney and at the Royal Melbourne Hospital. My mother became symptomatic when I was about fourteen. This meant that for a while we had a household containing one person having mood-swings as she grew into a hardheaded teen and another who was also having mood-swings as her brain began to degenerate. My mother is now fully symptomatic but still in the early stages and on a cocktail of medications to help stabilize her moods and to help her cope with the pain as she struggles against her uncontrollable jerking movements.

I want to write about my own personal experience with HD and the genetic testing I went through in a separate recount but to do so I needed to explain how Huntington’s Disease came to exists in my life.

Huntington’s Disease has been compared to having Parkinson’s, Alzheimer’s, Dementia and Schizophrenia all at once. Overall it is pretty unfortunate. They say that once a person becomes symptomatic they around a twenty year life expectancy. A decade ago they would say it was about eight to ten years. Most people don’t live long enough to actually die of Huntington’s. It’s more common for people with HD to die from choking or illness as they lose their ability to cough or swallow. We all hope for a cure but realistically we are just hoping for a drug that will delay symptoms, slow the degeneration and prolong life expectancy. The best that we can do is try not to pass it on and try to raise as much awareness as possible.

Read about my Huntington’s Disease testing experience here.