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.

Wednesday, August 10, 2011

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, 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

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