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

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

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!

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?

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.

Book Launch Success!

Well, it is safe to say that we had a very successful book launch! It was a fantastic celebration with family, friends and fans in the home of my dear friend. The door prizes were exciting and many people left with something (sometimes two or three things) they won! The food was also amazing, and with many requests, I will post some of the recipes below. Overall, I am very greatful to everyone who had a hand in helping me to pull this off. A special thanks goes out to Jayne and Evan, Linda, Phil, Gary, Andrea, Joeline, Mary, Laura, Myra and Meredith. Without you, I couldn't have done it!! And thank you to Warren Dean Group for sponsoring the party and Changing Hands Bookstore for providing the books. Being an author has been a wonderful journey.... and it has only just begun! Thank you everyone for your continued support :)

Pesto and Cheese Stuffed Cherry Tomatoes

Cherry tomatoes

Cream cheese

Prepared pesto (basil and garlic, found in the spaghetti sauce isle)

Slice a sliver off of the bottom of the tomatoes so they will stand up. Then cut off the top and scoop out the insides. Turn them upside down on a paper towl so they can drain. Prepare the cheese mixture by blending a cube of cream cheese with 3 heaping tablespoons of prepared pesto. Add salt and pepper to taste. Pipe the mixture into the tomatoes and refrigerate until served.

Cookie and Fruit Cups

Refrigerated cookie dough (used the Fry's brand chocolate chip)
Whipped topping
Sliced strawberries, raspberries and blue berries

Generously grease mini muffin cups. Place a small scoop of dough into each cup. Cook according to the package directions, minus a few minutes. When you take the pans out of the oven, drop them onto the counter gently so that the cookie sinks into a cup shape. Let cool for a few minutes before removing the cups and cooling them further on a rack. When cool, pipe whipped topping into the cup and top with berries.

Spinach Puffs (Thank you Meredith!)
(Recipe found on the Pepperidge Farm website, www.puffpastry.com under spinach triangles)


Roasted Red Pepper Bruschetta (Thank you Andrea!)

Roasted Red Bell Peppers
Sliced French bread (long and skinny loaf)
Mozzarella cheese, sliced

Top sliced bread with a drizzle of olive oil and slightly toast in oven. Top with a thin slice of mozzarella cheese and a square of roasted red bell pepper and warm in oven until cheese melts.


Mediterranean Skewers (Thank you Andrea!)

English cucumbers, cut into chunks
Feta cheese, cut into chunks
Kalamata olives

Slide a chunk of cucumber onto the toothpick and push to the bottom, then a chunk of feta cheese, and then a Kalamata olive. Drizzle the skewers with olive oil and sprinkle with salt and pepper.


Brazillian Cheese Balls (Thank you Lessia!)

3 cups tapioca starch
3 eggs
1 cup milk
1 cup oil
1 cup parmesan cheese
1 cup mozzarella cheese
Salt

Mix ingredients together in the blender until smooth. Bake in mini baking cups in a 350 degree oven for 10-15 minutes.

Life and a Book Launch Party

It's funny how we always manage to overwhelm ourselves, especially when we are trying not to do just that. I'm sure somebody can relate. Especially as a woman, and an excellent multi-tasker, I manage to think that juggling is what we are supposed to do! And then as I wear myself out, I realize that taking things one step at a time is also possible. I can hold the baby and enjoy watching his face and talking to him while he nurses, instead of trying to catch up on my e-mails while I am blessed with that time with him. Or for once JUST making dinner, instead of doing the dishes, feeding the baby, and manning the oven and stove all at the same time. Granted, things can take a lot longer that way. And when things take longer, sometimes some things just plain don't get done. But I suppose that there is a time and a season for everything...and the important thing is that I can enjoy my kids and family while they (we!) are young and everyone is still at home.

So don't ask me how I am planning a book launch party in the middle of my normal choas. For some reason I need to celebrate this exciting thing in my life - this book that came from somewhere deep in my mind and managed to make it onto paper - this book filled with my fears, dreams, emotions and hopes. It is a miracle considering the last four years of my life. So here it is, and I can now look forward to a celebration in its honor - thanks to all of my amazing friends and family and thier tremendous help.

So here is to staying up a little later at night so that I don't miss anything during the day, and so that the birth of this project can be fussed over. We (ok, I) deserve it, right?!

"Flames of Redemption" is here!