Category: Bleeding Disorder

The Power of Positive Choices

~ Linda Wright

Recently I saw a quote from Norman Vincent Peale posted on Facebook. “Live your life and forget your age.” I felt as if I had been hit with a jolt of indignation. Forget my age? I like my age! I can’t really take credit for it, but it came as an unexpected surprise when I celebrated my 62nd birthday. That’s not something I want to forget because, with a bleeding disorder there were lots of medical professionals along the way who predicted a substantially shorter life span for me. When I was twelve years old and too big to crawl under the desk, I did not morn that my body had grown. Why now would I want to feel sorry that at the age of 62 there are things I cannot do that were easy when I was younger?

However, that wasn’t the only reason why the quote set off a spark of anger.

When I was a child, one of my cousins would send me a subscription to Guide Posts each year. The magazine in the 1950’s was filled with anecdotes about the power of positive thinking. They offered an easy fix for all ills. Just pretend that there is nothing wrong and it will go away. My cousin hinted that the magazine was what a little girl with a severe bleeding disorder needed to be healed.

Now I like chocolate, it makes me forget my troubles, but I know it doesn’t make them go away. I also know that the only thing I can change is my attitude. Most of the time I am an optimist, but when I have negative thoughts I don’t want to sit in judgment by someone who thinks I am undermining my health.

What is healthy is to acknowledge that my bleeding disorder (like my age, my eye color, the gap between my two front teeth) is a part of me.

If my cousin thought that I lacked positive thinking, then he really didn’t know me. Yet, even as a child, I understood that positive thinking was not enough to make my body suddenly produce fibrinogen.

What angered me was that the underlying message seemed to be that if you were sick you didn’t have enough faith. I didn’t believe that having a bleeding disorder was my fault. It was not only foolish to pretend that having a bleeding disorder had no effect on my life; it was dangerous, both physically and emotionally.

After church one Sunday I saw a friend of mine who had undergone chemotherapy treatment for cancer and was now in remission.

I said, It’s wonderful to see you looking so well!

Her husband beamed and said with pride, “Yes, if you have the right attitude you can beat cancer.”

Without thinking, I responded, “Sounds like blaming the victim to me.

My friend’s face relaxed into a warm smile and nodded as her husband looked confused.

I believe she understood that if her positive thoughts could cure the cancer, then her negative thoughts might have caused it to occur in the first place.

So excuse me if when I look in the mirror I see a 62 year-old woman. Some days I like the way I look, some days I don’t, but I believe I would be foolish to wish that I wasn’t my age.

Let it be a dance we do

~ Linda Wright

This morning I awoke earlier than usual, jittery, and craving sweet foods. It is the day after an infusion of clotting factor. Years ago I began having allergic reactions, which included hives and shortness of breath. Now I receive pre-treatments that control these reactions, however one of the pre-treatments is a corticosteroid. It makes me hyperactive for at least 24 hours before I crash. It is a familiar feeling to me now and I have learned to adjust.

In the 60th year of my life, I changed my approach to dealing with my bleeding disorder once again.

I realize that I am part renegade and part coward when it comes to treating my bleeding disorder. In my childhood, the advice from my hematologist was to infuse with Factor I (fibrinogen) only when I had a life threatening bleed. Blood products were dangerous and not to be used freely.

Frequently long days of rest, elevation and ice would slow a bruise enough for it to be managed without and infusion. There were topical solutions like Gelfoam sponge™ and Blood Stop™ that could be used on surface wounds.

When I was a teenager one physician who did not believe that I could be a girl and have a “real” bleeding disorder carried this advice to an extreme. During those difficult growth spurt years I suffered unnecessarily from bleeds into my ankles. The effect of the untreated bleeds has been permanent arthritic damage.

For a period of time in the 70’s, I took the other road and joined the flock. The mantra then was “when in doubt, infuse.” I was on the Board of the National Hemophilia Foundation when HIV began to infect the flock. We were once again the canaries in the mineshaft. Many of the flock already had Hepatitis C.

I abruptly left that heavily trafficked road, to follow “the road less traveled.” It felt familiar and safer although more challenging. Like Robert Frost described, it has “made all the difference.” Frost never said it was a better road. Most people like to think that is what he meant. I would like to think that my choice of roads brought me to the age of 60, but I don’t say that anymore. I do believe it was just the road that made all the difference in my life.

So now that I am over 60, I have chosen still another path. Each month I go into the outpatient hematology/oncology clinic and get a dose of cryoprecipitate. It brings me up to about 50% of normal clotting. The half-life is long and even though the research does not back me up on this one, I believe I can notice an effect for at least two weeks.

It’s a matter of choice. Even if my body can no longer dance, I feel like it gives me some time for my spirit to dance.

Spontaneous Bleed

~ Linda Wright ~ 1 Comment
One day when I was about nine years old, I was dancing around the kitchen while my mother cooked supper. My feet slid on the newly waxed floor and before I knew it, plop I landed hard on my bottom. My mother was convinced that there would be a large bruise from the fall. A few days later no bruise at the point of impact and I had forgotten about the fall. My mother vowed never to wax the kitchen floor again and breathed a sigh of relief.
 
Later that same week I started noticing a rash in my arm pits. It prickled and burned a bit. A day after the rash appeared, the armpits seemed to be hot, puffy and sore. By the next day the swelling had increased to a point were I could not lower my arms and I was in excruciating pain. I looked like Frankenstein with my face contorted, my neck stiff and my arms outstretched. I knew what this meant, there was bleeding under my arms and I needed an infusion of factor to make it stop. I can still remember that during the car ride to the hospital, each bump in the road felt like a hot knife was cutting off my arms.
 
My unusual condition created some curiosity in the Emergency Room. Several doctors and nurses came to observe and wonder about the cause. It wasn’t until days later that I remembered the fall in the kitchen and how I had thrown both of my arms over my head and back trying to keep my balance.
 
This week a hematologist asked me, “Have you ever had a spontaneous bleed?”
 
Firmly I responded, “No, although sometimes it takes me a long time to identify the cause of a bleed.”
 
The doctor looked confused. Perhaps I just don’t understand what is meant by “spontaneous bleed,” I mused. Spontaneous combustion, I learned in the dictionary, is defined as, “the ignition of organic matter (e.g., hay or coal) without apparent cause, typically through heat generated internally by rapid oxidation.”
 
Is it too late to change my answer to that question, doctor?

I.D. Bracelet

~ Linda Wright ~ 1 Comment

The pre-op instructions were specific; remove all jewelry on the day of your eye surgery. Dutifully I followed the directions.

I left my watch on the oak bedside table. I dropped my wedding band and three other rings into the china jewelry box. The octagonal lid of the fragile box made a raspy sound as I closed it. I hesitated when it came to the Medic Alert bracelet.
“Perhaps it won’t matter if I leave it on a little bit longer,” I thought. After all I might get into a car accident on the way to the ophthalmologist.
I have worn a form of Medic Alert for as long as I can remember. It has hung around my neck on a stainless steel chain or, in its most recent incarnation, around my wrist in links of gold.  More than one doctor has cautioned me to wear it at all times. I wear it when I sleep, when I shower, when I am working, or driving and even when I am hospitalized.
That morning there was also a plastic catheter inserted in a vein on my arm just above the Medic Alert bracelet. The eye surgeon had explained, “The risk of any bleeding with this surgery is very low. However, it is better to get an infusion of clotting factor the day before surgery, just to be safe.”
 
“Wonderful,” the nurse at the day surgery exclaimed when she saw she would not have to start the I.V. line herself. “That will really speed things up,” she added as she led me to the room with the stretchers. With a few quick tugs she pulled the curtain shut so I could change into a johnny.
 
“We need to sedate you just enough so that you are awake but cooperative,” she explained, “I’ll be back in a minute to take your vital signs.”
 
Then the nurse spotted the I.D. bracelet still on my wrist. “How silly of me,” I said as the nurse asked me to allow her to unhook it and remove it to a safe place.
 
I did not tell her that it is my good luck charm. It is intended to ward off the evil spirits of inappropriate treatment in ambulances or emergency rooms. It is a health care surrogate if I were unconscious or unable to advocate for myself in an emergency.
 
As long as I have worn this talisman its purpose has never been tested. Not once have I been in a situation where its imprinted medical data has been required. The bracelet has never lived up to its promise. Perhaps it says more about my identity than I want to admit.

Trolls cannot change truth, but truth changes Trolls.

~ Linda Wright

In the weeks following my 61st birthday I faced my troll. The fearsome creature usually lives in the caves of my consciousness. It pops up threatening to swallow me on occasion. This time it leaped out and surprised me while I was undergoing my annual medical examinations and subsequent tests.

First I made appointments with the hematologist, primary care physician, gastroenterologist and physical therapist. Because my back pain was increasing, I scheduled an appointment to check my orthopedic shoe adjustments and inserts. I also booked an appointment with my dentist to talk about my toothache. 

The physical therapist evaluated my flexibility and strength and adjusted my weekly regimen; doubling the days per week I should spend practicing my routines. The dentist custom-made a night guard to prevent me from grinding my teeth in my sleep. That troll was definitely emerging from the cave.

The other doctors wrote orders for the routine lab tests, scheduled radiology appointments, and set dates for follow-up appointments. Grimly I began attempting to cross the bridge, checking off the list, so that I could reach the other side to (at least temporary) safety. It looked like the troll was creepy crawly coming my way.
 
I find that lists have a way of growing longer even as items are checked off. This list was no exception. No sooner had I checked off annual mammogram than I got a call to come back for an ultrasound for the suspect breast tissue. The evil troll appeared, smiling and licking its lips. I am a stubborn goat though, so I banished the troll with a promise that soon there would be a fatter goat to eat.
 
When the new shoes I had ordered arrived they had been improperly adapted and had to be returned so that the work could be corrected. The mouth guard has been adjusted three times already. The toothache isn’t gone but the neck pain and morning headaches have disappeared.
 
The liver function blood tests were drawn on the orders of the hematologist and a month later the gastroenterologist wrote another order for a blood test. The troll was not alone this time. They looked bigger than I had remembered while I felt smaller. It will still be a few weeks before I get all the results and until then I intend to befriend those nasty trolls.