Jenna Lovell -Instinct & Intuition

Welcome back to the ‘Meet my Peeps’ Guest Series. I met Jenna Lovell through an online Chronic Illness bloggers group set up by Carly Findlay. Jenna lives in Tasmania, a part of Australia very dear to my heart. When I put the invitation for my series of Guest Posts, Jenna jumped in.  I am so glad to bring your her words and wisdom. Through her blog, coaching with clients and speaking at events and conferences, she shares her story of living with a rare genetic illness and how she has changed her health and life. Jenna loves mail, so pop over to her corner of the internet and say hi:
www.mymissingfactor.com
jenna@mymissingfactor.com
https://www.facebook.com/mymissingfactor
https://instagram.com/mymissingfactor

Thanks Jenna for contributing, I really value your input!    -Rach

The biggest thing that has changed for(2)

I was 16 when I was diagnosed with a rare, inherited bleeding disorder called type 1 Von Willebrand Disease. Like those with haemophilia, my body doesn’t produce enough of one of the essential clotting proteins, and I’m susceptible to bruising, nose, throat, gut and colon bleeds, and as a female with this diagnosis, my periods are severe in every sense. While I’d definitely invite you to take a read of my physical symptoms, Rachel has invited me to share with you my other experiences – managing the mental, emotional and spiritual challenges having a genetic illness throws your way.

This story really starts long before my birth, with my mother’s experiences. While she experienced all the same symptoms I do, she was never diagnosed. She had to struggle through monstrously difficult periods, excessive bruising and other symptoms without a diagnosis or a hint of medical support. I’ve found out in recent years that for women of her generation, that was far from a rare experience (though thankfully its pretty rare now here in Australia). Fear and anxiety about engaging with doctors is common among those of us who had to wait until later in our lives for a diagnosis, which makes getting care and support an anxious task, despite its necessity. So after a few years of horrible periods myself, the decision was made to ask doctors about it, but that definitely brought nerves. We knew my mum had never been given the attention she needed, and had no idea if I’d get the right support or not.

Luckily, my GP is fantastic, and referred me to two equally skilled specialists who dispelled any fears or concerns about their approach, and were able to provide me with my diagnosis. Of course being a teen at the time, my struggles didn’t stop there. It took around 2 years to find the right combination of medications to manage my bleeds and for them to settle down to the most under control point I’ve had them, but in that time, I had a lot of time out of school, I missed social events with friends, I had several teachers talk to me about my attitude and commitment to school work, which prior to my diagnosis I had no good reason why it was slipping. I had the worst of my symptoms during the most important two years of high school (years 11 & 12), so I have no doubt my illness during that time impacted my final grades. Its only been in the last few years that I’ve made progress in creating and maintaining new friendships – after struggling with this in high school due to my constant absences and subsequent loss of friends (and even relationships with my relatives). Even after being diagnosed, I struggled for a number of years to explain my diagnosis and symptoms given the primary issue I deal with is my menstrual bleeds. I felt embarrassed to talk about the details, to mention my condition to others, even when it was needed because of the social taboo about talking about our reproductive systems.

It will come as no surprise to you that as a teen and young adult this put a massive pin in any plans to have dates! I often find it ironic that the primary class of drugs used to treat female bleeders is contraceptives – trust me, with periods like mine, you don’t spend time thinking about sex or anything related to it! I was also scared and worried about telling boys and men about my diagnosis and symptoms for a long time – would they understand it, would they think I was gross, would I have to explain far more to a male than a female, thus extending the time I was talking about my periods to a male, probably in public!

I also went through a period of almost 10 years after my diagnosis that can only be described as my cognitive dissonance days. While I don’t skip taking my medication, for roughly a decade, I continued to have period-based symptoms, large unexplained bruises, and an unrelated but constant string of colds, flus, chest infections and even a few rounds of pneumonia. On paper, I may have looked ‘healthy’ – my weight was in normal ranges for my height and age, I was diagnosed by treated for my bleeding disorder, but I was ignoring a lot of signs. Clearly, my immune system was struggling, and I just didn’t feel great – inconsistent energy and frequently tired, struggling with an undiagnosed gluten sensitivity, and I felt lacking in strength, both emotionally and physically. At the root of this was deep seated apathy – I took no care of my body and I didn’t listen to any of the (now glaringly obvious) signs it was sending my way. I didn’t care about my health that much because I didn’t think I needed to.

So what changed for me?
A number of new experiences in the last few years have seen me revolutionise my relationship with my body, health and myself:

  • I’ve become connected with the patient support community for people with bleeding disorders. I have to say this was a turning point in me finally accepting my condition and myself. There’s nothing like other people who go through what you do, they just get it. Some of the people I trust most in the world come from that community, and I can say I wouldn’t be the same without them.
  • A local Hobart-based business, Barrecode, also has a lot to answer for! This low-impact strengthening workout has not just seen my physical self improve its condition, but I now also trust my body to do physical things, and know it can be challenged and not fail on me. The owner, Christie, also introduced me to new eating philosophies that have supported my exercise and general health, but also allowed me to better understand my body and its needs.
  • Meditation. Bet you’ve heard that one before, but by gosh has my personal quiet time made such a difference! In a physical sense, I use it to manage pain, but its also been fundamental in me coming to a new relationship with my condition, with experiencing pain, and developing my intuition which has helped me make better decisions in all parts of my life.
    The biggest thing that has changed for me? I now trust myself – wholly, completely and over anyone else. I trust my body and I can work together to make me healthier every day, and my instinct and intuition will always provide the best outcome.

-Jenna Lovell

Making Music out of DNA

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I’ve been sequenced, my DNA sample was sent in a slick little kit to the States; they sent me back the raw data and I sent that off to Stanford to be reported on.  I’m in the early hours of studying the reports that have just come back.

Apparently I have increased genetic odds for empathy,intelligence and good sprinting muscles.  Who knew?! Running isn’t exactly my forte! I descend from Northern Europeans and I am 2.6% neanderthal.  Genetically.  Not behaviourally…I hope.

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Those were the good bits.

The other bits I am not so sure I really want to look at again.  I’ve scrolled through a myriad of red-bordered “bad” SNPs and the sheer amount of further research I am going to need to do is a bit overwhelming.  There were some things that were no surprise.

I am genetically more likely to have autism, substance abuse issues (Ah-ha! Does cake count as a substance?), skin cancer and ankylosing spondylitis. I have mutations on three of the MTHFR genes.  (Yes, you are not the only one who thinks that sounds like swear-speak!)  My autonimmunity genes repeatedly show up on the ‘bad’ list, but on the plus side, I have a normal population risk for some of the big nasties.  There are more results to look at, more research to do.  I have many more questions than when I started out, but isn’t that what information does for you?

Reminds me of that schoolyard rhyme…
The more you read
the more you learn
the more you learn
the more you know
the more you know
the more you grow
and so it goes…

I am lucky, to be me, in this country, with a free health care system and a carefully regulated medical insurance industry.  I am in a very privileged position as far as my genetic information is concerned, it’s not going to affect the health care I receive in our current political climate.  Recently, the FDA put a stop to genetic profiling reports for medical purposes from the company 23&Me. I assume this is because the implications for people in the USA with regards to insurance and health care provision were too complex. And our genetic information should be handled with care.  We should have control of it. There are ethics and questions to be considered.

I was less concerned about whether or not this information might compromise my insurance picture down the track than some might be.  In this country, and because I was late to the private health insurance party, I have been declared uninsurable.  Yet I am still cared for in our hospital system and my medications are all subsidised.  In Australia, insurance companies are required to cover anyone, after a stand down, even with pre-existing conditions, so I guess Australians don’t need to worry too much either.  Is that true, my cross-the-ditch-cousins?

I feel quite excited about what the science of genetics can already tell us.  It gives me enormous hope for the future of medical research.  It puts me in mind of the medical scanning machines aboard star trek enterprise and I long for the day when patients can be assessed by a comprehensive diagnostic process, 100% accuracy, questions answered, measures taken. 
Do you think that day will come?

It’s not the first time my genes have been tested.  When my Mum found out she had ovarian cancer, she agreed to have her DNA tested for a mutation. They had just discovered that some familial ovarian and breast cancers showed up a mutation on the BRCA-1 and BRCA-2 genes.  My Mum had the BRCA-1 mutation.  There was a 50/50 chance that Mum’s kids would carry the mutation too, so my sister and I were tested. My brothers were recommended to be tested too, but testing has to be a choice for the individual.  In males the mutation is responsible for prostate cancer.

The mutation runs strong in my Mum’s line and we were so nervous.  I can thank my Dad for his genes; I don’t have the mutation.  My sister, too.  But many of my cousins were not so lucky.  There is only one lucky thing about that, we have the technology to test our genes.  Many of my cousins have taken the option to proactively fight the cancer by having preventative surgeries.  It doesn’t eliminate the possibility that they will go on to develop breast, ovarian, or prostate cancer, but it greatly reduces the odds.  What a gift from science to our family at large.  Advance warning, a heads-up.

I am in awe of the science achievements being made all the time.  Clever things well beyond the ability of my brain to comprehend or analyse.  But we don’t have to understand it all to benefit from the advances.  We, and our children, and our children’s children get to enjoy the labours of the lab technicians. And one day, there will be an answer to strange things like Dysautonomia.  It won’t be a mystery anymore, it will be as easy to understand as any other malady.

And people like me, like you, might even get better.

This piece of music is a composition made by my genetic testing company 23&Me.  It is composed based on my genes.  Ha!  The Sound of my Sequence!  Right, time to go and answer some questions: I’m going to go find out about that MTHFR!?

The Lament for the Numb

Listen to Dave Dobbyn singing his Lament for the Numb. 

Dave Dobbyn: Album Cover. Beside You. 30 Years of Hits.
Dave Dobbyn: Album Cover. Beside You. 30 Years of Hits.

Life is so busy.  I know. It’s nicer, warmer and safer to cocoon ourselves into the business of each day and shelve the big issues.  Maybe you’ve been hurt, or you are over it all.  Maybe there is nothing left after you’ve dealt with your day. But if you could pause and think about it, what are the things beyond your daily life that you care about? Deeply? What are the things that worry at the back of your mind, the things you wish you were taking some action about?

I care about kids abandoned to poverty, poor choices and the cycle of violence.  Kids who don’t even get breakfast before they start the school day. I have seen the fallout from that first hand when I was teaching in low decile schools, it worries me for the future of our country.

I care about the 27 million human souls trafficked as slaves, their voices screaming into the void, unheard.  I can’t even comprehend the enormity of what a number like that means in human terms.  Twenty seven million individuals, as important as you and me.  

 

She is a survivor of sex slavery. Kidnapped by an armed group at the age of 13, she spent the following three years under its control. Her life depended on the will of her commander, who forced her to transport dry minerals during he day and raped her nightly as his "wife." Forced marriage and its connection to enslavement remain poorly understood.  Source: freetheslaves.net
She is a survivor of sex slavery. Kidnapped by an armed group at the age of 13, she spent the following three years under its control. Her life depended on the will of her commander, who forced her to transport dry minerals during he day and raped her nightly as his “wife.” Forced marriage and its connection to enslavement remain poorly understood. Source: freetheslaves.net

I care about educating girls about how powerful and significant they are for our future.  In some countries girls have no voice and no choice, but even here in our pocket of peace, where we have no wars, no corruption, no excuse; we are not doing nearly enough to empower young women who do have choice. Why do we continue to diminish and reduce them to a two dimensional image of value, until poor self esteem boxes them into small lives?

 

Source: a girlsrighttodream.tumblr.com
Source: a girlsrightto dream.tumblr.com

Why can’t we all be kinder?  I care about the numbers of people ending their suffering through suicide.  The immeasurable sadness left in their wake. I want to gather all the sad, suffering people up into an enormous embrace.  Why can’t we look out for each other better?  What stops us from helping people who are in pain? Why don’t we ask… are you okay?

 

source: herphany.tumblr.com
source: herphany.tumblr.com

And I care about all the people suffering from poor health.  It’s everywhere you look, hideous epidemics like cancer. Such an insidious enemy, robbing people of their loved ones. I care about finding a cure. If we had a cure, I’d still have my beautiful mum.

And I care about the millions of people like me, suffering from ailments that are poorly understood by Medical Science.  Chronic illnesses are long term, vitality sapping problems without adequate research funding to create studies that will improve our quality of life. For every patient who languishes in a health system that cannot help, bowled over by their diagnosis, there is a family, suffering alongside.  There are kids, husbands, siblings, grandparents and dear friends, required to take on more than they can.  There are sacrifices and prices to be paid that will be felt long after the patient has gone.

 

Source. amf.com.au
Source. amf.com.au

I feel passionately about these things. What are your deep concerns in our world?
Pia, one of the fellow students of my blogging course, is running something called a link-up.  She sent out the call for us to write about something we care about, providing links for taking action.  The power of social media is bigger than just making connections.  So I resolved to write this post about that something I really care about, with some useful information and ways you can help, if you want to.

But I care about a lot of things.  And my magic wand is broken.

So, here are the ways that I am doing what I can about the stuff I care about.   Until that wand is fixed, doing something is better than doing nothing.  If you want to join me, here is some information and links.

To donate to or provide sponsorship to the wonderful programme that is helping impoverished kiwi kids to get breakfast and basic clothing, have a look at KidsCan.

To learn more about the horrific realities of contemporary slavery, watch this TED talk, please watch all the way until you see the images of what a reunion after liberation from slavery really looks like, look at those beautiful mother faces, I dare you.
To
 
find organisations working to help those caught in the human trafficking trade, see this directory.

For a website aimed at empowering young women in first world countries, check out this phenomenal resource:  AMightyGirl

To help raise money for Ovarian Cancer Research, you could host a “morning teal”, you can go here to find out more.  Or to join the community of people in New Zealand with Familial cancers related to the BRCA mutations, go here.

To donate to the only Australasian research that is currently happening in the field of Dysautonomia, go to my friend Michelle’s fundraising page.  Help me to do my bit for Dysautonomia awareness and research.  We are a small number of patients, but each one of us is a precious human being who is desperate for more answers.  Maybe your bit will help?


And I care about YOU with all my heart.  You have a battle on your hands, no matter who you are, no matter what your life’s story is.  You are human.  It is a pretty raw state, it hurts sometimes.  Sometimes you feel so numb. Even if you can’t see the hands reaching for you, they are there.  Take action. You can grab hold of a hand, or even just let one grab yours instead of pulling away.  Connection is what keeps us all together.  If you have been feeling like leaving, please don’t.  Grab hold of a hand, or ring for help, set the wheels in motion.   Look here, or call these good people, or talk to the people you love.

And if you are reading my blog because you too suffer from a chronic illness, here are some things you can do to practise some self-care  I have them on good authority, my Health Psychologist gave me a chapter to read for homework last week.  It’s called “A Caring Hand” from this book; The Reality Slap by Russ Harris.  My Psych is a good ‘un, so I am passing on these nuggets to you.  I wish it were my own, real caring hand that could rest on your shoulder today… do know that my heart is with your heart.

Thanks Pia, for your wonderful call to action.  

Hurry UP! Stem Cell Research & Therapies

I know people who are in need of a miracle.  My cousin is a quadriplegic.  My friend has a degenerative neuromuscular disorder. Another friend has Multiple Sclerosis.  I, like many of my cyber buddies, have progressive autonomic dysfunction.

And in Russia, some miracles are happening.  A patient’s own stem cells are being harvested and reintroduced, infusing them with the cells responsible for regeneration in the body.  Bodies like my friend Kellie’s, can have another shot.  People like Kristy Cruise, spokesperson for HSCT in Australia and MS patient, can regain so much of what was lost.  She had lost mobility before the treatment and now she is walking. I just saw Kristy Cruise on Australia’s SBS Insight programme.  She spoke from the patient perspective in a discussion targeting emerging stem cell therapies.  She spoke about how $50,000 made it possible for her to have Hematopoietic Stem Cell Therapy in Russia, where the death risk rate is 1%, compared to 5% in Australia.  Others spoke too, patients, doctors, tow-the-line professionals and medical opportunists.  There was a good range of people speaking about therapies already being trialled, and about other therapies, no longer funded yet full of promise. There were spinal injury patients engaged with embryonic stem cell therapy trials in India and more people, turned away from Australian MS stem cell trials because they are not disabled enough, even though research shows that the earlier the stem cell therapy occurs, the better the response rate. It makes sense really, there is less to repair.  

And I found myself having a thought that most of you won’t understand.  Please try to, I am not diminishing the experience of patients with MS, not even for a millisecond, and this thought occurred for reasons I will explain…  I wished I had MS instead of what I have.  I wished, not for the first time, that I had a clearer aetiology so that I could be eligible for treatment.  I wished to have a more “popular” diagnosis… because when there are many people with your illness, governments are more likely to fund research, even as little as is happening in the world of medicine for the ‘big’ diagnoses, there is at least something.  For people with clear aetiologies, the options, sometimes, exist.  Because when there are many people with your illness, pharmaceutical giants see the earning potential and are more likely to fund research.  But when there are few of you, the studies are almost as rare as the condition.  And without studies, without double blind trials, no-one wants to try new treatments. Certainly no one in New Zealand.

So I wished bad thoughts.  And I felt bleak. I’ll pull myself up again by my bootstraps, because that is what I do.  Besides, my kids are on school holidays, so I’d better fake it ’til I make it.  Again.  They need less of the downcast and more of the downright-fun-Mum.  Better go see if I can find her, I’m sure she was around her somewhere…

Maybe some of the people I know will have miracles in their lifetime.  I really hope so.  And selfishly, I really hope I will too.  Here’s to you, Rich, to you Kellie, to you Fi.  And to me and all the other Dysautonomia patients around the world.  Little pockets of miracles, waiting to happen.  As Mr Battista, spinal cord injury patient, says to the medical community at large, as they wrapped up the SBS discussion:  “Hurry Up!”

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If you want to donate to medical research that is benefitting patients with some forms of Dysautonomia, you can click over to my friend’s website fundraising opportunity here:  Clicking my Heels for Dysautonomia

If you want to see what is happening in the world of research for Dysautonomia and related conditions, you can click here:  Dysautonomia International.

If you want to watch the programme I just watched; the SBS discussion on emerging stem cell therapies (thanks for the link Michelle!), you can click here:

Insight SBS:  http://www.sbs.com.au/ondemand/video/294368323527