Tuesday, November 8, 2016

Bam! You have Huntington's Disease

When you are 19 years-old, healthy and happy, the last thing you expect to hear is that you have a 50% chance of inheriting a degenerative brain disease. Most people think about inheriting money, or blue eyes. Not me. Well, yes, me too. But it’s kind of hard to think about, let alone appreciate that kind of inheritance, when you are thinking about the possibility of inheriting the crude ability of becoming a vegetable right around middle-age.

Huntington’s Disease. It’s like having Alzheimer’s, Multiple Sclerosis, Parkinson’s, psychological disorders, and depression (both clinically and because of loss of brain cells), all at the same time, and progressively getting worse over time. They call someone like me, with an affected parent, “at risk”. And not surprisingly, those who are at risk and get the genetic testing done to tell them whether or not they have a very likely chance or not of starting symptoms around middle age, and test positive, have a high rate of suicide. After seeing a parent go through the progressive brain disease, the last thing you can cope with and handle is the fact that you will end up the same way. It kind of makes you appreciate inheriting thick ankles, or moles, or small breasts.

It is difficult to explain what goes through your head when your father comes back from rigorous neurological and psychological testing to figure out what is wrong with him, only to come back and explain that he has a disease that will take over both his mind and body before he is 40, and that by the way, you also have a 50% chance of inheriting it from him. Fifty percent. That’s like flipping a coin, and bam! You have Huntington’s Disease.

Surprisingly it wasn’t the outward appearance of the disease that scared us so much in my dad. He would have uncontrollable “chorea” movements, or his limbs would lash out and then become rigid for a while, and he would eventually have to use a cane to walk. But that was unnervingly natural and understandable. What we weren’t prepared for was the loss of his inhibitions, or his ability to comprehend consequences, and basic right and wrong. He did things that we never would have imagined that our virtuous, honorable, loving and kind father could have done. He was a completely different person, let alone the father who had been my knight in shining armor. It was both shocking and emotionally overwhelming to comprehend that this was our new reality, the whole while the very real possibility of me becoming the same anomaly in the future heavy on my mind.

I think that ignorance saved me at first. I didn’t quite understand the magnitude of my situation and what it meant for my future. Not to mention my biological brother and sister and what it could mean for them as well. But all of the sudden I started wondering if it was worth it to continue paying for my college education, if I should get married and have children – possibly passing it on to them. I wondered if I was taking enough pictures and writing in my journal enough to remember my memories that could be taken from me. I wondered if every twitch of my muscles was the start of a soon to be devastating decline in my muscle control or if every angry outburst was the beginning of many uncontrollable future ones. At nineteen, at the point where I was just starting to figure out my life and what to do with it, I became frozen in a terrifying land of “what if’s”.

And of course you expect that you will be able to handle things. Everything would be okay. You have your faith, your family, and your friends. But then the fear that came, only after watching my dad’s symptoms increase exponentially, was disconcerting. That is when reality hit hard.
Why me, right? Why my dad, my family? I was not strong enough to fight this let alone fight it well. I didn’t know how to become that pillar of strength my mom needed, my siblings needed, my soon to be fiancĂ© needed. Not to mention my 5 younger adopted siblings, 3 of which have disabilities and challenges of their own to face every day. How was I going to overcome the distressing chill of despair that was snaking its way around my heart and my consciousness? How does one come to terms with the fact that their life could be cut short? But then knowing that even before that, their quality of life will decrease continuously until their dying brain can no longer keep them alive. And all of this while oblivious to their loved one’s sacrifices in caring for them, and heartache over their hurtful and flippant behavior. Suddenly I felt like I was in a bad, sad ending, drama movie.

So the next issue was whether or not to be tested. But does anyone ever really want to know that they have a ticking time bomb inside their head that will go off at an unknown time in the prime of their life? What kind of life would that be? One of constant worry and anxiety? But on the other hand, knowing that you don’t have it would bring peace and relief. But just like that coin, it could land on heads, and then knowing you do have it and symptoms will come, would probably be unbearable to live with. With marriage and children in the near future, would I change my life decisions if I knew that I had it?

The short answer is no. The long answer, in all honesty, was more like a yes. I’d like to think that it wouldn’t affect my life decisions to that extent, but when it really came down to it, I knew that it would. Besides, it would be irresponsible for me to not take it into consideration, wouldn’t it? Could I live with myself knowing that my future husband not only had to care for me, but also our child or children if we all had Huntington’s Disease? Could I live with myself knowing that I cursed my child with the same foreboding fate by bringing him into this world knowing that just a flip of a coin could determine that he would have this devastating disease too? I was embarrassed to realize that when faced with an impossible decision, selfishness won out. I had to know. I had to have that knowledge that I convinced myself would give me power or some semblance of control in this sordid situation. But as it turns out, genetics testing was just the beginning in this adventure we call life. 

I can’t explain the wave of deliverance that washed over me when my brother and sister and I all tested negative. Ironically, we had beaten the coin toss odds, the three of us. For some reason we were spared that one hardship in this journey. Now I find myself asking, “why me”? Why was I spared, and not my dad? I mean, isn’t it enough that he has hemophilia (inherited from his mom)? Why did he also have to inherit Huntington’s Disease from his dad? I’m not sure when, but eventually I also had to come to terms with the fact that yes, it’s okay that I don’t have Huntington’s Disease. 

What I’ve learned is that my family was given this experience in life for some reason, and we needed to embrace it for what it was: an unfortunate circumstance that could bring us together, or pull us apart - an opportunity to see what our true characters are made of. No one wants to live with “what if’s,” but I can tell you most assuredly, that knowledge can be power, but also sometimes, ignorance is bliss.

Monday, October 22, 2012

Huntington's Disease: Our Journey

My family used to have fun all of the time. We would go camping together, swim together, play games together, or have picnics and BBQ’s together. We were far from perfect, but my family was definitely having a very great time along the way. We were also very religious together. Our faith kept us strong, and our love and hope moved us forward.

Then things changed. Dad was forgetting things all of the time. At his office or at home, there were post-it notes everywhere, even in his shirt pocket. We thought that he had just been too stressed and needed a little more support. But soon thereafter he started to forget how to shift the gears in his car, to stop at red lights, and how to back up the car straight. He was very confused and troubled about his new found situation.  

He also started yelling and having angry outbursts all of the time. Any little thing could spark a raging voice. It was easier to avoid his path then to possibly encounter his unpredictable wrath. He never seemed happy anymore. And we never knew when his Jeckel/Hyde complex would switch. It was that simple. He was nice and fun, or mean and hurtful.

Then it was time. There had been rumors in the family that both my grandpa and my grandpa’s brother had a disease. The family had been very quiet about it and we hadn’t heard much because my grandpa and grandma had divorced a short time before my dad was born. Consequently, we did not have a whole lot of contact with my grandpa’s family. After taking into consideration many suspicions, my dad soon decided to see a neurologist. Then, a few months and a few more doctors later came the diagnosis: he had Huntington’s disease, a degenerative brain disease. This was only the beginning.

Mom and dad sat my brothers, sisters and I down to tell us about the disease. They also explained that they decided to rewrite their wills and create a new trust. They planned for when my dad would leave work and go on disability, adjusting his life insurance and other tedious things. But I remember the conversation vividly when they mentioned how my mom had planned to care for my dad when he was no longer able to care for himself. 

They did not want this disease to change our family at all. Everything would be taken care of, the plans were made, and there would be little worry about. We were agreed up until they told us that we each (of the biological children) had a 50% chance of inheriting this disease.

I admit we were moderately afraid. My sister and I were both engaged with plans to be married, and start our own families. Okay, this news was a little more than disturbing. It was then that we understood how real this disease was. If we had this disease, we could possibly pass it on to our children as well. For days there were a lot of thoughts, prayers and concerns that were voiced, but nothing could have prepared us as well as witnessing my father struggle with the disease first hand.

We started noticing his physical symptoms. While sitting still he was unable to keep his head steady. It would bob back and forth to a silent rhythm. Sometimes out of nowhere his hand would fly up from rest at his side, to up in front of his face. It became very clear that he could not control the sharp or the subtle muscle twitches that very often were outwardly visible. He also seemed to lose his balance very easily and decided to start using a cane.

We quickly realized that the reduction of stress played a very large roll in how his physical symptoms manifested. He left his work and gave up driving. He in some ways felt that he was abandoning his manhood and freedom, and resulting emotions were twisted as well. Everything was very hard on him. Most of all he was obviously frustrated with the new person he had physically become. Depression became very evident, enough so that he opted to go on medication to ease his ‘lows’. And after witnessing all of these things, we soon realized that it wasn’t the physical or emotional symptoms that were the most menacing and hardest for us to face.
We watched as our once moral and compassionate father, showed sides that we had never seen. His inhibitions, moral conscience, and logical thinking were vanishing. He became very selfish and the only emotion he displayed was anger. He became promiscuous, devious, rude, chaotic and unpredictable. We very rarely saw rational behavior, especially when he was spending money. And he never displayed any kind of remorse for anything he did that was obviously hurtful to others, including thoughts of suicide. The dad that we all knew and loved had been replaced with a new person: one that we couldn’t respect or trust. It was very hard to have sympathy for someone who very openly, didn’t seem to care. The behavior changes came so quickly that we could barely contemplate mourning for the loss of a certain aspect in our father, when the realization of another loss would interfere, over and over again.

And then the ‘plan’ that had been so carefully constructed before everything had come to the point that it had come to, changed. My mom could not function with the realization of my dad’s new lifestyle. She could not work, raise children, and stay emotionally stable, by constantly being aware of his latest antics. He was unknowingly making it very hard on her by disrespecting her and her efforts to maintain a healthy, caring relationship with him. And this was all so much out of his character that she really didn’t even know how to react to him anymore. She painfully decided that they needed to divorce.
There haven’t been very many happy family outings since. Being in the same room with my father would leave you vulnerable for an unexpected verbal attack. Being in the same room with my mother would leave you vulnerable for an unexpected emotional breakdown. It was hard, and we knew our family would never be the same. I found that the faith that my father had taught us children when we were young was barely holding the broken pieces of our family together. And hope seemed distant: hope that things might be different, hope that things might be like they were before the disease, hope that things might get easier, and hope that we would stand triumphant and honorable at the end of this trial.

I find myself telling everyone, if you could have only known the dad that I grew up with, the dad that taught me to play the piano, that drove me to soccer games and cheered me on in the cold, that swiftly came to apologize in tears after an argument, that would buy special junk food for our slumber parties, that would honor and cherish my mother and their relationship, that taught others about faith and Jesus Christ, that would invite the local transient home for a warm dinner and a job opportunity, that would sacrifice wearing holes in his clothes so that everyone else in the family could afford new clothing, that would work hard day and night to provide for his family (sometimes holding 3 jobs at once), that would edit my English papers, that showed us how to be patriotic, that taught us the sanctity of marriage and being chaste, that taught us how to set up tents and cook foil dinners, that taught us how to drive a stick shift, that was a knight in shining armor for his little girl that adored and admired him.
I know there is a purpose and a season for everything. But that doesn’t make reality of the present any easier, especially when trying to explain to someone that my dad’s Huntington’s behaviors are not who my dad really is, or was. Or when trying to understand why I tested negative for the disease, while others will test positive. And there isn’t hardly enough information out there to prepare you for and to lessen the blow of this disease. Each case is different as well as each family. Though I still experience fear, and because any kind of change is hard, I strive every day to learn more and prepare myself better for the things yet to come. And through my experience, this is what I have learned thus far:

Hope lies in the past, with fond memories. Hope lies in the present with your knowledge and in your support system. Hope lies in the future, with a cure. Hope lies in our faith, and in the love that will pull us through.
Here are some things that I have learned from Huntington’s disease:

Laugh a Little
Even when you have to be serious, a sense of humor can salvage an almost broken day.  When tension and stress are maximized, the light tug of humor can soften and ease the pain.  When my dad’s arm would fly up uncontrollably, he would wave his hand and say that he just wanted to say “hi”.  We couldn’t help but chuckle and smile.  Don’t forget to laugh, and look at things with a light-heated perspective.

Pray a Lot
Your faith, however perceived, can make up the difference where you fall short.  I believe that faith is hope, and hope can save a lot of things.  After all you can do, pray and truly believe that things will get better.  Our spiritual side can correlate with our emotional health.  And a higher power helps by filling in the gaps, strengthening our drive, motive and resolve.  I believe that a loving Heavenly Father, hears and answers our prayers, and will comfort and lighten our burdens in his own way and time frame.

Network of Support
No one can handle everything alone.  If we were meant to, we probably wouldn’t have been born into families, or have naturally come together in societies and groups.  Humans are social, and we help lift each other up and support each other.  Family is obviously crucial.  Parents, children, siblings, aunts, uncles, grandparents all serve supportive rolls in some way.  Friends, neighbors and others we associate with also support in distinct ways.  The web of support that we spin around ourselves can be our lifeline.  It can carry us when we feel we don’t have the strength for another day.  It can encourage us, strengthen us, guide us and applaud our strengths.  Professional counselors can also help us put our struggles into perspective.  And support groups help us to understand that others share in our grief and pain, in their own ways.

Constructive Outlet
Keep busy.  When you are working creatively or constructively on whatever project you choose, it will help you to resist from focusing on the mere difficult side of your life, and will open up your heart to positive alternatives.  And sometimes you just have to walk away:  everyone can use a little break now and again.  It is ok to leave your struggles for an evening, a day, or even a week.  Having a favorite place, activity, etc. can recharge your emotional batteries.  So if you are feeling empty and vulnerable to anger or other negative emotions, arrange to have your own personal uplifting time.

Personal History
Write it now:  where you were born, your family and friends, where you have lived, fun experiences and special occasions.  Add photographs.  A family who has happy visual memories to fall back on will be better equipped to endure the worst.  And it is a great family history opportunity to be passed on through generations.  It’s also important to understand who you are before Huntington’s disease, so that you have a clearer picture of who you will become with Huntington’s disease (even as the caregiver or family member).  If you were prone to angry outbursts, they may increase.  If you were anxious and timid, you may now be aggressive and forceful.  Stress usually changes most of us for the worst, so figure out what kind of person you are, so you can prepare yourself for the kind of person you may become.  

For Better or for Worse
Why do you think a marriage commitment brings this up?  HD definitely falls under the “worse” category.  The hard will get harder.  The pain will increase and emotional tension and heartache will test your bond.  Have good communication now.  Write things down, and strive to make every day the best that your relationship has seen.  And don’t forget your goals and strengths.

Unconditional Love
It is hard to love someone that is hateful, hurtful, deceitful and unfaithful.  This disease takes away an individual’s personality, but not their soul.  Dig deep into their whole being and love that soul, that person that you knew before the disease.  Love the person and overlook their actions because nagging and contention will only make you forget who this individual once was, and the ability to treasure that memory.

Reaching Out
Reach out to other families like yours who are suffering.  Find strength in numbers and in serving others.  Again, it is an opportunity to forget yourself and your woes for a moment, and think about what others are trudging through as well.

Giving Support
Be there for each other.  Voice your frustrations, but more often voice your love and affection towards your family and to those you care about and who are struggling the most.  Just like we depend on others for strength and support, we can also be that foundation to someone else.

Be Strong, Hang on to Hope, and Don’t Give Up
Patience can wear thin, but your strength comes from every fiber of your being.  Be strong for your family.  Be strong for the HD affected person in your life.  Be strong for those who grow from your experience and your strength – including yourself. 

To read more about Huntington's disease and our experience, including the treatment that has been helpful to my father, please visit his website: www.philliphardt.com

Tuesday, August 14, 2012

Wheat-free... one step at a time

I love to bake.  The problem is that I have learned that my body does not process wheat very well.  In fact, my bowels and my digestive tract seem to only function properly when I cut wheat completely out of my diet.  Before that, I had a lot of pain and discomfort and all of that other good (bad) stuff around my midsection, not to mention the dry patchy rashes I also got on my skin – mostly my upper arms.  And when it got really bad, it felt like a dry patchy rash lined the inside of my digestive tract causing a constant soreness and sharp pains as food passed through the whole… way… down. 

So obviously, I was soooo glad to figure out that wheat was the culprit... except that it meant that my whole diet would have to change.  And for any of you out there that have tried to bake or even cook with wheat-substitute flours – you know that it can be a challenge – especially if you are on a budget.  

So here enters Pinterest into my dilemma.  I’ve found that a lot of recipes posted on Pinterest are tried and true.  So almost 6 years into my “no more wheat” quest, I finally started to find some promising recipes.  Who knew that a pin board for just about anything could be the solution to my Wheat-free baking and cooking problem? 

Well, the start of the solution anyway.  A lot of recipes called for odd ingredients that are expensive and hard to find.  And some things just aren’t feasible if they cost an arm and a leg or if you have to travel across the world to get them.  However, the more I learned about different flours and leavening agents, the easier it became to recognize recipes that I knew would work AND what ingredients I could substitute to make the working recipe a feasible recipe for my circumstance.

Now, Wheat-free doesn’t always mean Gluten-free, but Gluten-free always means Wheat-free.  So Gluten- free recipes are always safe, but they never include ingredients that I prefer to use in my flour blends like regular oat flour.  And most things taste differently with different flours, so the rest of my family prefers to still eat wheat.  So I usually end up making two of everything, unless the taste and texture is almost identical – like with oat flour blender pancakes.

So for me, though this was a good and needed discovery for my personal health, it adds to the daily complications that I already get to monitor.  But you know, it is a lot easier to deal with daily complications when you feel healthy, than when you feel like you would rather curl up in a ball and stay in bed all day.  

So my quest continues as I learn and eventually find things that work for me!  Wish me luck… and continue to post your tried and true Wheat-free and Gluten-free recipes on Pinterest so that I can stumble across them!  I appreciate it!

Please visit my blog for more on my wheat-free journey:  www.wheatlovesmenot.blogspot.com

Wednesday, February 29, 2012

Hemophilia Symptomatic Carriers…Are You Out there?

I feel like I am on a roller coaster - up and down, up and down.  And did I mention that I don’t like roller coasters?  I get sick trying to do a cartwheel or doing a flip turn in the pool.  But any time I broach the symptomatic carrier topic, it starts all over again.
Does anyone else go through this?  I am a woman.  I am a hemophilia carrier.  I have bleeding issues.  They are not severe, usually, but I still have them.  When I go to the dentist, when I strenuously exercise, when I bump something pretty hard, and when I clumsily fall.  The bruises and bleeds come and I can feel them.  I can’t always see them.  But that isn’t good enough for my Hemophilia Treatment Center.  I guess they want me to look like a severe hemophiliac, swelling like a balloon to acknowledge that I am a woman and I bleed too.  But my son is moderate/mild, and he doesn’t normally swell up like a balloon.  We treat him with Factor IX when he feels a bleed coming on - I don’t have to see it to know that it is painful to him and that it affects his activity.  When he has a bleed we treat it.
So I found a different hematologist, outside of the hemophilia treatment center, to see if he would treat me like a mild hemophiliac…which technically, at 28%, my Factor IX levels should diagnose me as.  And that is what he told me.  He said, “You are a hemophiliac”.  Finally, someone heard me!  So my first question is…why are symptomatic carriers called symptomatic carriers instead of hemophiliacs?  Maybe if that changed we would be treated just like they treat the boys.  My second question is…if my factor levels are under 50%, which is the number they use to diagnose boys, why is my hemophilia treatment center so against giving me that diagnosis so that they can treat me?
Well, here is a snag that I’ve come upon, multiple times.  Each time my Factor IX levels are tested, a different number comes back:  sometimes as high as 78%, and sometimes as low as 28%.  So here is question number three…why does it fluctuate?  According to the nurse at the hemophilia treatment center, my numbers shouldn’t fluctuate – therefore I don’t have hemophilia.  I know, the logic is not there, but she stands by it.
So do you understand now a little bit of the roller coaster I’ve been on?  Not only emotionally up and down with people telling me that I am crazy for thinking that I have bleeding issues sometimes, and then finding out that I REALLY DO have bleeding issues sometimes, and then being told that I shouldn’t have bleeding issues.  What? 
But the roller coaster is also up and down physically with trying to engage in exercise programs and sports to stay healthy, and then having to be sidelined with a joint bleed (that I really am - but not really having).  For years I had to endure these bleeds without access to factor replacement.  And now, well, let’s just say my joints will never be the same.
So let me tell you some of the things I’ve noticed with my fluctuating factor levels.  As a teenager, I really noticed a lot more bleeds.  I started playing soccer at age 10, and had a few ankle “injuries”, but it wasn’t until high school soccer that I really began to notice the constant bruising and knee and ankle “injuries”.  Yes, high school soccer is a little more competitive and that may have contributed to the increase, but to tell me I did not have a problem and was not experiencing the bleeds is just downright rude.  I had to ice in a cold whirlpool sometimes before every practice and home game just so I could play through the pain.  If that is normal for a non-hemophiliac, then why weren’t all of my teammates also going through the same thing?  And that one time in practice after 20 minutes of working on roundhouse kicks – which led to a hip “injury” and two weeks on crutches – must not have been related to hemophilia symptoms either.  Not to mention my wisdom teeth extraction and two weeks of heavy bleeding, or the D&C surgery after a miscarriage and the excessive pain and bleeding for over a month.  I could go on and on.  My favorite is another hip "injury" after training for a half marathon.  I was literally down for three months.  It hurt to sit, stand, lie down, and walk.  Yep, the same exact hip that I “injured” in soccer years ago.  At that point I was fed up with the roller coaster and wanted to demand to get off. 
So besides noticing my bleeding issues increasing as a teenager, I also noticed that my levels seemed to fluctuate depending on my menstrual cycle and what time of the month it was.  And then when I went on birth control, it seemed that my bleeding issues almost went away completely, unless I missed a pill or took it late, and then it would seem like my factor levels dropped drastically for a short period of time.  So my fourth question is…could hormones play a role in Factor IX level fluctuation?  And if so, is it possible to calculate when my levels would be lowest and when they would be highest? 
With my last pregnancy, my new hematologist decided to test my factor levels regularly throughout the pregnancy, and then give me factor replacement therapy after delivery for two weeks after to reduce bleeding and to help me heal.  Sure enough, as my pregnancy progressed, my hormones increased, and my factor levels consistently increased, peaking at 78% right before delivery.  My obstetrician, last minute, decided to give me factor replacement right before my scheduled delivery.  So I received the factor, and eight hours later delivered my third boy.  They drew blood afterward and my levels came back at 28% (with factor still in my system!).  Really?  My factor levels can fluctuate that much within 8 hours – with factor in my system, and no one has thought that maybe we should figure out why?  Are there others out there like me? 
So here are some more questions:  Why is my case so different from any other symptomatic carrier (hemophiliac) woman with a bleeding disorder who’s factor levels don’t fluctuate?  Do they really know that they don’t fluctuate?  Have they tested thousands of symptomatic carriers (hemophiliacs) regularly over an extended period of time to compare data to?  I doubt it – especially because they won’t even diagnose any as having a bleeding disorder.  Why would a symptomatic carrier (hemophiliac) woman come to be treated and get her levels tested regularly if she is just going to be told the whole time that she doesn’t have bleeding issues, and that every bleeding episode in her life must have another explanation rather than hemophilia?  Yep, I’m going to ask it again…really?
I can tell you this, the two weeks of factor replacement after my last delivery made my recovery amazing.  I mean, compared to my other two deliveries:  night vs. day.  I’m not only talking about the amount of bleeding (that was so much less too!), but also the time it took to heal from the episiotomy and to just heal in general.  Wow.  If I knew it could have been like that before, maybe we wouldn’t have waited 10 years before having our last child.
So I’m asking…hemophilia symptomatic carriers – are you out there?  Let’s start talking amongst ourselves and compare stories.  Let’s start trying to figure out what the doctors refuse to.  If we have an idea of what we want to look for, like hormone levels compared to factor levels over a long period of time, then maybe we can go to our doctors and request it.  Or if there are enough of us out there tired of riding on the same roller coaster, maybe a factor company will have a research study done.  More diagnosed hemophiliacs mean more business for them, right?  I want to live in that kind of world, where if I want to be diagnosed and I have the symptoms, than I can.  And not only that, but then I can actually be treated for my symptoms too!  If research studies could be done, then there would be information out there for the doctors to finally realize that their textbook answers will not cut it when it comes to WOMEN HEMOPHILIACS.  The textbooks are wrong.  I say, let’s make history and rewrite the textbooks.  It is about time.
Are you out there?  Talk to your friends and neighbors.  Talk to your treatment centers and factor companies.  If we work together, it will be a lot more effective than just one voice on a blog. 
I’m ready to be heard! 
I’m ready to walk on solid ground!
Will you help me spread the word?

comment below or send to comments@michellebooks.com

Friday, December 23, 2011

Happily Ever After

And they lived…
Why can’t we use the term, “Happily ever after” anymore?

My writing style is a little different from most.  You know how your English teacher would give you all of these guidelines that you had to follow for each paper you wrote?  How many paragraphs, what had to be in each one, etc.?  Don’t get me wrong, I can do that kind of writing (though it is not as enjoyable to me).  But it mostly stifles my creativity!  Writing and following an outline does the same thing to me.  So hence, my novels have but a wee bit of ideas scribbled down in place of a formal outline.
So the secret is out.  I usually don’t know what the ending to my story will be until I get to it!  In fact, most of my writing flows to a certain extent, and the storyline unravels as I write.  I love the feeling that I get when I feel that I just can’t type fast enough as the ideas come from my mind and flow out my fingertips.  It is during those times that I am really zoned into the story and the characters literally come alive in my head.  And usually I can picture them like I would in a movie, and the dialogue just bubbles out.
And then I get stuck and I don’t know where the story is going to go.  This part I don’t enjoy so much…because then it becomes more like “work”.  At this point I have to consider a few different path possibilities, weigh the pros and cons, decide how my morals and values should be considered with each path and ultimately what I’m really trying to accomplish with the underlying message of the whole book.  During these times it is hard to focus and sometimes I even have to force myself to set aside some time to try to get back into the groove again.  A lot of this time is actually spent with me reading and rereading what I have already written to get the feel of the characters again and to hope that something will spark that flow of uninterrupted inspiration.  And quite honestly, I have been known to offer a prayer or two about the subject matter.  Interestingly enough, I knew after each of my completed novels were finished, that they were written specifically for someone in my life…and others like them that need to hear the specific message in the book.  But I didn’t know that while I was writing them.  So for me, when I’m stuck, after some coaxing, prodding and some divine intervention, it starts to flow again. 
I don’t know that I would recommend this style of writing, because consequently I end up having to go back to “fix” things that evolve in a certain direction that maybe wasn’t intended at the beginning or wouldn’t make as much sense with what was previously written.  But that is all part of how it works for me.  I enjoy the challenge (not necessarily in the “stuck” stage, but before and after in the actual “flow” stages).  So unfortunately this means that endings are really hard for me.  If it were up to me, the story would just continue to be a story and would go on and on.  Or it would be nice to just end everything with “they lived happily ever after”.  But that is not how it works.  Unfortunately.  I feel I have to write to my audience and entertain them, motivate them, make them smile or move them in some kind of way.
So just for you, I will remain “stuck” until some kind of inspiration leads me to every detail necessary to tell the story that needs to be told.  And there you have it.  It seems like a flawed process, but that is me.  For some reason I always have to do things the hard way.  You’d think I would learn.  But until then, the realness of the story will have to be enough…and for me that is all the happily ever after I need!

Thursday, September 22, 2011

Til Death Do You Part...Computer Parts

Can you love a computer do death?  I think it is a valid question.  And yes, I think it is possible.  Let me tell you why.  I bought a HP Pavilion laptop about five years ago, and after formatting it to fit my needs, I used it all of the time.  It practically became my desktop computer and my mobile computer and my anything else I needed computer.   In fact the best part about it was that it was mobile, and boy did it travel around with me.  Up the stairs, down the stairs, at the kitchen table, on the countertop, on the bed, at my desk, on the coffee table – there were few places it didn’t go.  My only complaint was that it only had a couple of hours of “battery life”.  But since there are multiple electrical outlets just about any where I go, the cord was mobile too. 
And then it happened -  about two years after its birth in my home.  One day the poor thing just wouldn’t turn on.  I didn’t even get the “blue screen of death”… I only got death.  It was hopelessly gone.  And then my worries started.  I wondered if my data could be recovered because I had two novels saved on my hard drive that I tried to faithfully back up, but knew that I should have been better at.  So that is when it comes in handy to know a computer guy – conveniently one of which lived in my own home – and alas, my data was safe and secure.
But since we cannot live without technology nowadays, I was soon shopping for a replacement laptop.  My computer guy, who just happens to be my husband, suggested that I look at a new netbook, or ultra portable "mini"  laptop computer.  It actually made sense to me, especially since mobility seemed to be the key for me – so about four stores later we found one.  An Acer Aspire One.  And fortunately, it was love at first sight!  First of all, it came in the color red.  Second of all, it was small and compact enough to be even more mobile than my last one.  Third of all, the battery life was a whopping EIGHT hours.  And did I say it had a fabulous battery life?  I was sold.  Of course my computer guy made sure that I would have enough memory, and all of that other good stuff, but this was it.  It doesn’t get any better than this, right?
So herein lies the current problem, as I occasionally evaluate my love affair with my new computer… how do I prevent myself from loving it to death?

Monday, August 22, 2011

A Woman with a Bleeding Disorder Essay

I always knew that my dad had hemophilia, and that I was a carrier, but it wasn't until I was twelve years old that I was tested and found to have lower clotting factor IX levels as well. Of course, years ago, women did not have bleeding disorders, especially hemophilia. That was it. My test results were set aside, and I was told that if I ever had a surgery I might need to have factor replacement. But that was a long shot, so that statement was kind of given a s a side note. However, the joint bleeds began when I started playing soccer.

I sat out many games with a "twisted" ankle, though I knew what it was; the purple and then greenish colors surrounding the back end of my feet around my ankles. To me it was obvious. "But girls don't have hemophilia."
If I had a quarter for every time someone said that to me...
So I often iced my ankles and played thorugh the pain.
"Why are you always injured?"
A coach asked, and even sent me to a sport trainer to determine why my ankles were so "weak". They couldn't hear me either.

But soccer was my passion, so I continued on, even through high school. It was there that I experienced my first knee and hip bleeds. I knew what they were, but often iced them before and after practice and games - and played through the pain. That was not always effective though, as the pain would get so bad that I had to use crutches and take weeks off at a time. The joints wouldn't swell enough to be obvious, but I could see the discoloration of the bleeding under the skin - especially after icing each joint. I knew, but know one would listen.

And then there was that time that I fell really hard and my elbow landed on a metal slide. It swelled up so big that a tiny scratch on my skin split apart. The x-ray revealed that there was not a broken bone - just a hematoma. Or as I would call it, a bleed. But that was considered normal swelling, even for a person without a bleeding disorder.

And then my wisdom teeth came out. After bleeding for two weeks, I was told to put tea bags on the open wounds to stop the bleeding. I knew what was wrong, but no one could hear me. Another week later, after a soft food diet through the Thanksgiving holiday, and after numerous tea bags, the bleeding finally stopped.

As I got older, I started attending hemophilia conventions and found out that women could have bleeding disorders! Imagine my joy at finally being recognized! But I still could not find a hematologist that would agree with that fact, and who would consider treating me. And later on, through trying to network with other women, I found out that clotting factor IX levels fluctuate with hormones and other changes in women's bodies. This made sense, because I definitely bruised and bled more at different times during the month.
But the people that needed to hear that most, would not listen.

I attempted to train for a half marathon, thinking that jogging would be better than a contact sport. During the third week of training I had extreme pain in my hip. I continued to train and eventually was in so much pain I ended up on crutches.
A hip bleed - I knew what it was.
When my son has a bleed, the hematologist doesn't flinch at prescibing him what he needs. But not me, not a woman. I had to be off of my feet for three months - but no one would consider the possibility.
Women don't bleed like that - not even carriers with lower clotting factor levels.
No one would validate what I already knew: I am a woman with a bleeding disorder!

Now my knee and ankle joints ache in cold or moist weather, and exercising is difficult and painful - which is a consequence of untreated bleeds. I feel like I have been one of the forgotten or overlooked and sometimes even scorned.

After a miscarriage and D&C surgery, with the doctor insisting that my low clotting factor levels would not be a problem, I had again, painful complications and extra bleeding.

After slipping on the tile in my house and landing on my elbow again, hard, the same symptoms: swelling, pain and bruise-like coloring in the weeks to come. No one would listen.

I've been around hemophilia my whole life. I treat my son's bleeds. I know the symptoms. I know the disorder inside and out - I even train school staff and scout leaders about it. But my own needs have been hushed. My own fears have been swept under a rug. I felt like I was losing a tiring battle. I was strong, yet weak, as I tried to speak out, hoping that someday girls younger than me will be given the benefit of the doubt.
And then a friend with a bleeding disorder reached out to me. She is also a woman. She recommended her hematologist and told me he had saved her life.
"He will listen to you," she said.

So I called, and went to an appointment, and even though I was pregnant, had my factor levels tested regularly. They were consistently going up with the hormones of my pregnancy. Even though my levels were high, I was given factor replacement right before delivery, and then my levels were tested again. They had dropped from 78% to 28% (mild hemophilia range), even with the factor in my system! I recieved factor replacement for two weeks after the delivery - and my recovery was amazing compared to my first two.
Someone listened!
It was now documented!

I am a woman with a bleeding disorder.