Thursday, October 9, 2008
Stimate
Hello...I see that the Hemophilia C article has now been published in the most recent issue of HemAware, the magazine of the National Hemophilia Foundation. One of the more recent treatments my hematologist wants to try is Stimate. He sent me a prescription through the mail, and my pharmacy is ordering it. Do any of you or your children use Stimate? Even if you have Von Willibrands Disease, does it work? If you have a Factor XI deficiency, does it work to control bleeding? I have terrible nose bleeds, so we're hoping this will stop those. Let me know...
Sunday, July 13, 2008
Bubble Wrap
More often than not, I don't consciously think about my hemophiilia; however, some types of activities necessitate conscious awareness. Today I was helping my boyfriend's family replace a broken window. I was replacing the broken window with plexiglass, so that it wouldn't get broken again. The store sold sheets a little bigger than what we needed, so I was cutting off the excess before I caulked the plexiglass into place. While doing this, I became well aware of my bleeding disorder.
Well, I had scored the plexiglass and had bent and broken off most of the excess at the score; however, a small piece didn't break off and was still attached to the score. I scored it a little deeper, and I tried to break it off again. Stupidly, I wasn't wearing yard gloves, and the plexiglass broke off and dug into my finger tip. When they say plexiglass is 10 times stronger than glass, that's true, and that means it's many, many times stronger than human skin.
Well, I now have a nice 1/4 to 1/2 inch cut on my middle finger. After it happened and I saw the blood run out of my finger, I went into the house to get some paper towel to stop the bleeding. While she was helping my bandage my wound, my grandmother-in-law said, "This is why we shouldn't let you do things like this." My response at that time was that anyone could cut themselves while replacing a window.
Now that it's a few hours later, I still ponder that statement. Just because I have a factor xi deficiency, should I not do things because I could get hurt? My students at school try and prevent me from passing out papers, because I could get a paper cut. I guess my question to you is this:
How much "bubble wrap" should we keep around those with bleeding disorders? Should I not do yard work or "odd jobs" around the house just because I have hemophilia?
Well, I had scored the plexiglass and had bent and broken off most of the excess at the score; however, a small piece didn't break off and was still attached to the score. I scored it a little deeper, and I tried to break it off again. Stupidly, I wasn't wearing yard gloves, and the plexiglass broke off and dug into my finger tip. When they say plexiglass is 10 times stronger than glass, that's true, and that means it's many, many times stronger than human skin.
Well, I now have a nice 1/4 to 1/2 inch cut on my middle finger. After it happened and I saw the blood run out of my finger, I went into the house to get some paper towel to stop the bleeding. While she was helping my bandage my wound, my grandmother-in-law said, "This is why we shouldn't let you do things like this." My response at that time was that anyone could cut themselves while replacing a window.
Now that it's a few hours later, I still ponder that statement. Just because I have a factor xi deficiency, should I not do things because I could get hurt? My students at school try and prevent me from passing out papers, because I could get a paper cut. I guess my question to you is this:
How much "bubble wrap" should we keep around those with bleeding disorders? Should I not do yard work or "odd jobs" around the house just because I have hemophilia?
Saturday, June 14, 2008
What's in a Name?
Wow! I can't believe that the school year has ended already. Each year goes by in the blink of an eye. I mean it was just yesterday that I was welcoming my 120 students into my classroom, wasn't it? Needless to say, the end of the school year has kept me quite busy. You see, I teach junior and senior students English, and as a senior teacher, I attend senior recognition night, graduation, and prom (not to mention the grades and stresses of pushing seniors to turn in work needed to pass). This keeps me quite busy, so I apologize for the lack of posts.
If you notice the title of the blog has changed a little bit. I had originally named it "Hemophilia C" because I prefer that term for my disorder as opposed to a Factor XI Deficiency. After showing my blog to some of my friends at the National Hemophilia Foundation, they recommended I try to keep everything Factor XI, as that phrase is more widely used. Taking their advice, I changed the title of the blog, and I'll try ti refer to it as both a Factor XI Deficiency and Hemophilia C.
Personally, I've had bad experiences using both names. I've found that doctors and nurses and other medical personnel look at my like I'm crazy whether I tell them I have Hemophilia C or a Factor XI Deficiency. I think I prefer to use Hemophilia C because medial personnel hear the word "hemophilia" and take me a little more seriously. At least they have heard of Hemophilia A & B, so they know somewhat what I'm going through or why I'm in the ER. When I say factor XI deficiency, people tend to get confused, as they don't associate the term with bleeding issues as quickly as they do the word "hemophilia." For those reasons, my doctor told me to put "Hemophilia C" on my medical alert bracelet.
When it comes to non-medical people, the word hemophilia is more known, so they already have a basic understanding of my condition. If I tell them I have a factor XI deficiency, I usually end up going into a long explanation about how blood clots and how I'm deficient in one of the 12 factors blood needs to clot properly.
What do you think? Does the title of the disorder make a difference? Have you had any personal experience with either term? Which do you prefer?
If you notice the title of the blog has changed a little bit. I had originally named it "Hemophilia C" because I prefer that term for my disorder as opposed to a Factor XI Deficiency. After showing my blog to some of my friends at the National Hemophilia Foundation, they recommended I try to keep everything Factor XI, as that phrase is more widely used. Taking their advice, I changed the title of the blog, and I'll try ti refer to it as both a Factor XI Deficiency and Hemophilia C.
Personally, I've had bad experiences using both names. I've found that doctors and nurses and other medical personnel look at my like I'm crazy whether I tell them I have Hemophilia C or a Factor XI Deficiency. I think I prefer to use Hemophilia C because medial personnel hear the word "hemophilia" and take me a little more seriously. At least they have heard of Hemophilia A & B, so they know somewhat what I'm going through or why I'm in the ER. When I say factor XI deficiency, people tend to get confused, as they don't associate the term with bleeding issues as quickly as they do the word "hemophilia." For those reasons, my doctor told me to put "Hemophilia C" on my medical alert bracelet.
When it comes to non-medical people, the word hemophilia is more known, so they already have a basic understanding of my condition. If I tell them I have a factor XI deficiency, I usually end up going into a long explanation about how blood clots and how I'm deficient in one of the 12 factors blood needs to clot properly.
What do you think? Does the title of the disorder make a difference? Have you had any personal experience with either term? Which do you prefer?
Sunday, June 8, 2008
Welcome to my Blog
Well, I guess I have set up the blog as best as I can, so it's time to start adding some text to this bad boy. Besides, what else is there to do during the third straight evening of heavy, heavy rain in southern Wisconsin?
First, let me tell you about myself. I am 28. I live in a suburb of Milwaukee, Wisconsin, USA. I am white, but I am not Jewish. For many that seems to be the oddest part of my hemophilia--I have no connection to the Ashkenazi Jews in Israel. Despite that I have a factor XI deficiency, which is now known as Hemophilia C. Lucky me, right?
From what I can tell from the National Hemophilia Foundation Web site, I am one of about 2,500 people in the United States who have this condition. I guess you can say that makes me quite unique! :) That is the reason for this blog--networking and meeting people. I have yet to meet or even hear of someone else who has this disorder. I was recently interviewed for an article that will be in NHF's HemAware magazine, and the reporter said she didn't even know of someone else with the disorder. I guess it would just be nice to talk to someone else who is living the same life that I am, who experiences the same difficulties that I do, someone to relate to, someone to share treatment ideas and bleeding difficulties with...maybe...maybe with this blog I can find someone who truly understands...
First, let me tell you about myself. I am 28. I live in a suburb of Milwaukee, Wisconsin, USA. I am white, but I am not Jewish. For many that seems to be the oddest part of my hemophilia--I have no connection to the Ashkenazi Jews in Israel. Despite that I have a factor XI deficiency, which is now known as Hemophilia C. Lucky me, right?
From what I can tell from the National Hemophilia Foundation Web site, I am one of about 2,500 people in the United States who have this condition. I guess you can say that makes me quite unique! :) That is the reason for this blog--networking and meeting people. I have yet to meet or even hear of someone else who has this disorder. I was recently interviewed for an article that will be in NHF's HemAware magazine, and the reporter said she didn't even know of someone else with the disorder. I guess it would just be nice to talk to someone else who is living the same life that I am, who experiences the same difficulties that I do, someone to relate to, someone to share treatment ideas and bleeding difficulties with...maybe...maybe with this blog I can find someone who truly understands...
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