I've been hunched over this laptop for days trying to gather my thoughts and put them into some semblance of order that actually makes sense.
Over the last eighteen months, I've been hit and miss on book releases, sending out prizes and social media interaction and after finally being able to return to the computer last Friday and receiving some very nasty emails, I thought it was about time to explain why to my friends and fans.
I have Multiple Sclerosis.
I know that most of you are staring at your computer screen like... What? Never heard of it. Just do your job, K.B.!
Now. if I had just told you that I had Cancer, you'd most likely be sympathetic, empathetic, and even understanding of my absences and delays. Right? Me too.
So, I want to take the time to explain my story and a little about what MS does to those it afflicts. Maybe then you'll be a little more patient with me.
In April of 2004, just after my 29th birthday, my family and I were at a Relay for Life event honoring both mine, and my husband's grandparents, and most importantly to me, my mom. She lost her battle with Breast Cancer on 4/3/01. So there we were; proudly walking lap after lap on the track of Westminster High School trying to raise money and awareness for a cure. We were laughing at the good times, and crying about the bad when I began to notice a flickering candle sensation in my right eye. It wasn't bad enough to make me stop walking, but enough to make me turn to my husband and tell him about it. He assured me it was probably just irritated from all the candles on the bleachers that spelled out HOPE.
As the evening progressed the flickering in my eye got worse and worse and began causing a massive headache. By the time we left, I was practically blind in my right eye. I thought that sleep would help with both my pounding head and my eyesight. When I woke the next morning, I was completely blind in my right eye, still had the pounding headache, and a new symptom... I was completely deaf in my right ear.
I called my husband at work and then raced to the doctor immediately.
My husband flew home and the doctor brought me into his office instantly. He examined me and shipped me off to the hospital for a CT scan, MRI, and bloodwork STAT!
It was a long day of pain, whirling tubes, and being poked by phlebotomists with little to no real experience.
The following morning he brought my husband and I back into his office to reveal the results. On the ride there, with my two-year-old son chattering in his car seat directly behind my own, I began crying. I was certain that I had cancer or some illness that they would tell me would surely take my life. The thought of not seeing my Monkey grow up made my heart ached and my stomach turn. After all, I had lost my mom when she was only 47 years old. She was young, and so was I.
The doctor ran through the results with us. I had no clue what the hell he was saying. I felt like I was in a nightmare that I couldn’t wake up from. Suddenly, I heard his voice call my name and I turned my head towards him. He asked a question that has and will forever changed my life.
Does anyone in your family have Multiple Sclerosis?
No, I replied. I had been a nurse. I racked my brain to remember what the hell that was. Apparently he saw the puzzled look on my face and proceeded to remind me what MS was.
After the shell shock had worn off he sent me down to GBMC in Baltimore for three days of IV Steroids.
My vision and hearing returned partially. I’m color blind in my right eye and have to wear glasses all the time to read. I’m still partially deaf in my right ear, and the headache never really goes away.
Since my diagnosis I've seen three neurologists, an Ear, Nose, and Throat specialist, and an Ophthalmologist that specializes in cases like mine, where I can’t just have laser surgery to fix my vision. The 7 lesions on my brain, and degeneration of the myelin lining covering my spine is what’s causing my health issues.
In the last eighteen months it’s gotten worse. I’m in constant pain with no relief. I have a new neurologist who is actually competent in my treatment, and I’m hopeful that I’ll stay in remission longer this time.
Recently, the new symptoms are a bit more severe causing me to fall down flights of stairs constantly, become disorientated, forgetful, lethargic, depressed, unable to get out of bed, and a whole litany of other issues that have had me in and out of the hospital.
To be blatantly honest, I just feel like shit.
You have no idea how many times over the last year and a half I lay in bed crying. I just wanted to be online with you guys, get my writing done, and send out the things that needed to be sent.
So I hope that after hearing my story, and reading the material I’ve provided for you that you will be just a smidge understanding in what my life has been like for the past eleven years.
You guys are part of my family, and if I thought for one second that you were upset with me, I couldn't stand it.
Below, I've offered a few visuals and the medical definition of MY disease
Multiple sclerosis (MS), also known as disseminated sclerosis or encephalomyelitis disseminata, is a demyelinating disease in which the insulating covers of nerve cells in the brain and spinal cord are damaged. This damage disrupts the ability of parts of the nervous system to communicate, resulting in a wide range of signs and symptoms, including physical, mental, and sometimes psychiatric problems.
MS takes several forms, with new symptoms either occurring in isolated attacks (relapsing forms) or building up over time (progressive forms). Between attacks, symptoms may disappear completely; however, permanent neurological problems often occur, especially as the disease advances.
While the cause is not clear, the underlying mechanism is thought to be either destruction by the immune system or failure of the myelin-producing cells. Proposed causes for this include genetics and environmental factors such as infections. MS is usually diagnosed based on the presenting signs and symptoms and the results of supporting medical tests.
There is no known cure for multiple sclerosis. Treatments attempt to improve function after an attack and prevent new attacks. Medications used to treat MS, while modestly effective, can have adverse effects and be poorly tolerated. Many people pursue alternative treatments, despite a lack of evidence. The long-term outcome is difficult to predict, with good outcomes more often seen in women, those who develop the disease early in life, those with a relapsing course, and those who initially experienced few attacks. Life expectancy is on average 5 to 10 years lower than that of an unaffected population.
Will you stand with me and Fight like a Girl to find a cure for MS?
For more information on MS contact the National Multiple Sclerosis Society.
As a side note, please welcome my new assistant, Mallory! She'll be helping me with posting when I can't get online. Writing, or typing to be exact is very hard in the middle of attacks. So she's going to help me keep you guys in the loop and finish sending out all remaining prizes. So if you're waiting on something from me, keep checking your pm's. We should have everything out in a few weeks. :)
As always, until next time...