Earlier this month I was fortunate enough to be able to attend the National Bleeding Disorders Foundation’s Washington Days event in Washington, D. C. This is an annual occurrence where people from all over the country gather to go to the Capitol to meet with our legislators and advocate for people with bleeding disorders. I … Continue reading WASHINGTON DAYS: Advocating on Capitol Hill
Ten years ago, I was working as a Career Advisor at a local college where I heard there was a young man with severe Hemophilia A on campus. I was anxious to meet him and assist him in finding employment upon graduation. During our first meeting, we did a mock interview, and it was then … Continue reading Job Seeking Tips For Those Living With A Bleeding Disorder
Today my son Tyler turns 22. It seems like only yesterday I was bringing him home from the hospital. I will never forget that day, especially when I received the shocking news that he had been born with severe Hemophilia B. What a long, strange trip it's been dealing with Tyler’s bleeding disorder. I never … Continue reading 22 YEARS LATER: WHAT I KNOW NOW
Las salas de emergencia son como Las Vegas menos la diversión. Entras y pierdes toda noción del tiempo. ¿Es de día o de noche, quién sabe después de tantas horas? En algún momento me di cuenta que dejaron de tener relojes en los cuartos, bien jugado administradores. Es el último lugar donde quieres estar, pero … Continue reading Navegando la sala de emergencias
Emergency Rooms are like Vegas minus the fun. You walk in and lose all track of time. Is it day or night, who knows after so many hours? At some point I noticed they stopped having clocks in the rooms, well played administrators. It’s the last place you want to be yet the best in … Continue reading Navigating the ER
For the past twenty years, two of the biggest challenges for my son Tyler and I have been dealing with depression and anxiety. After Tyler was diagnosed with a bleeding disorder, I was the one struggling. I’m assuming this is the case since babies seem pretty happy. Anxiety dominated my days. The fear of the … Continue reading Depression & Anxiety
This week we had to put down our beloved Labradoodle, Buddy. It was the hardest thing we’ve ever had to do. Buddy was 14 ½ years old and an amazing dog. He was my son’s best friend and he provided so much love and support to Tyler who struggled with painful bleeding episodes. Every time … Continue reading Pets are the Best
Recently I was telling my Mom that if I could do it over again, there would be a lot of things I’d do differently. I think lots of parents feel they would do better the second time around. I only have one child, so I never got a do over, “mulligan”. Of course, I’m kidding, … Continue reading Can I Get a Mulligan?
Everyone dealing with a chronic illness has their fair share of scary stories. One of my most memorable is both humorous and scary. Let me set the scene. Tyler was about six years old and had a Broviac catheter. A Broviac port is different than an implanted one as it has a tube that hangs … Continue reading Tyler In Charge
Sepsis: A Bloody Nightmare Ports-can’t live with them, can’t live without them! A port-a-catheter is a device that is usually placed under the skin. It is attached to a catheter (a thin, flexible tube) that is threaded into a large vein above the right side of the heart. When hemophiliacs are young, “ports” are used … Continue reading Sepsis: A Bloody Nightmare
I was fortunate enough to go to some bleeding disorders conferences these past few weeks. I saw friends I have not seen in years. It got me thinking about where would I be without the amazing support of my hemophilia family? How would I ever have survived? I am so excited to be consistently making … Continue reading With A Little Help From My Friends
One of the hardest things to deal with since my son’s diagnosis has been the unknown. There are so many “what ifs” it’s overwhelming. I still lie awake at night worrying about things over which I have no control. It started with, “How will I know if he is bleeding?”. Then “What if I don’t … Continue reading Fear of the Unknown
I ended Part 1 of Tyler’s compartment syndrome story with the fasciotomy just having been done. He was sent to the ICU while waiting for the swelling to go down somewhat so the surgeons could get the wound covered and start the healing process. Tyler’s next surgery consisted of placing shark collagen over the top part of the wound. The bottom portion was … Continue reading Compartment Syndrome: The Evil Within – Part 2
As crazy as Tyler’s hemophilia journey has been, his compartment syndrome experience was, by far, the worst. Compartment syndrome is a very painful condition that occurs when the pressure within the muscles builds to dangerous levels. This pressure can decrease blood flow, which prevents nourishment and oxygen from reaching nerve and muscle cells.1 In Tyler’s case, … Continue reading Compartment Syndrome: The Evil Within
It’s August and summer is over. School days are back. Recently, I was remembering back to when Tyler first started elementary school and the stress of working out accommodations. I knew I needed to decide whether I wanted to pursue a 504 plan or an IEP. I decided on the IEP. The reason I did … Continue reading School Days
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