The surgery day stress had brought up a lot of issues and feelings I hadn't thought about. Worrying about the future wasn't something that I wanted to do. I just wanted to be a normal teenage with no worries. So that was what I made my week of recovery about, being a normal teenager. I got to sleep in late, I had a huge fight with my stepmother, I hung out with friends that I didn't normally see because they went to a different school and I just tried to relax.
I realized as soon as the muscle biopsy results came in my life would change. At that point, I would either have a diagnosis or the probing and testing would continue. I knew if I had a diagnosis, then I would forever be 'labeled' and I didn't like the thoughts of that. But I definitely was not enjoying all the tests the doctors were ordering either. Really, I hoped I would wake up and have the last several months just be a dream. Of course that didn't happen.
I only got three days of relaxing before Dr. Brackett called. My results from the muscle biopsy were in from Dr. Odum. It was time for another doctor's appointment.
On Friday, January 30, 1998 my parents and I were in Dr. Brackett's waiting room. Dr. Brackett was a rheumatologist practicing with Arthritis Associates. We were by far the most youthful group in the entire waiting room. Most everyone had a head full of grey hair and some sort of assistance device to aid in their walking. I remember feeling so out of place. I was a 16 year old girl. What was I doing in this waiting room?
Once I was called back, my parents and I waited for Dr. Brackett in a small exam room. My parents had been divorced for a little over four years. I was glad they were able to come together for me. I know it had to be awkward for them to sit in that tiny room with me but I was so glad they were both there. As a way to lighten the mood, my dad was checking out everything in the room. He opened all the drawers, touched everything on the counter, and played with the instruments hanging on the wall. I told him I didn't think we were allowed to mess with all that stuff (even though he was doing a great job distracting me). My dad said that we were helping pay for it with our visit so he thought it was okay for us to touch everything. I had to laugh at his reasoning.
When Dr. Brackett came in the room, the mood changed. We all held our breath and waited for the results. He reviewed with us that my EMG was consistent with myopathy of the upper and lower extremities, my most recent CPK levels were 12,000, and my muscle biopsy was consistent with inflammatory myopathy. Dr. Brackett and Dr. Odum's impression was that I had Polymyositis. I had no clue what that was but it didn't sound good. Tears streamed down my face. I didn't know what all this would mean for my life and my future.
Dr. Brackett suggested we start with treatment immediately. I was to take 50 mg of prednisone everyday. I need to be on birth control and 1,200 mg of Caltrate-D. I would return in one month. Suddenly, everything was going so fast. We had answers but didn't really know what they all meant.
By the time I left his office, my head was swimming. Polymyositis and prednisone. I knew nothing about those things but they were about to take over my life. We were given pamphlets about each to read up on. I just wanted to run and hide. This couldn't possibly be happening to me.
(Below is a little extra info on prednisone and polymyositis….these terms were foreign to me at the time.)
Prednisone is a synthetic corticosteroid drug that is particularly effective as an immunosuppressant drug. It is used to treat certain inflammatory diseases (such as moderate allergic reactions) and (at higher doses) some types of cancer, but has significant adverse effects. Because it suppresses the Immune system, it leaves patients more susceptible to infections. (Wikipedia)
Polymyositis is a persistent inflammatory muscle disease that causes weakness of the skeletal muscles, which control movement. Medically, polymyositis is classified as a chronic inflammatory myopathy-one of only three such diseases. Polymyositis can occur at any age, but mostly affects adults in their 30's, 40's, or 50's. It's more common in blacks than in whites, and women are affected more often than men are. Polymyositis signs and symptoms usually develop gradually over weeks or months. (Mayo Clinic)
Showing posts with label My Story. Show all posts
Showing posts with label My Story. Show all posts
Thursday, January 16, 2014
Wednesday, January 8, 2014
Back to My Story
Part of my platform was to share my story about life with a disability. I started by telling about my childhood and sharing pictures of my family. I enjoyed looking back at my carefree days as a child and remembering the family unit I came from. Next, I shared about when I first starting noticing problems. I had a hard time climbing steps and walking long distances. This lead to me sharing about several doctor's visits that began a series of tests and my first muscle biopsy.
And then I stopped. I completely quit sharing my story. There have been countless people who have asked when the next blog post would be. People are really interested in hearing my story and I stopped. I just stopped telling it. I would blame my busy schedule or come up with some other excuse as to why I hadn't written anymore.
In the beginning, I think I really believed those excuses. I just had too much going on or so I told myself. As the weeks turned into months, I knew there was more to it. The deeper I dug into my medical records, the harder it was to relive those years of my life.
I am not an emotional person. I don't like to cry. While pouring over my medical records so I could provided the most detailed and accurate information for my blog, there would be tears streaming down my face.
So I stopped. I made excuses. I put my medical files aside and said I was too busy to write blogs about my life with a disability. When really, I didn't want to relive those hard moments in my life. I didn't want to remember all the things that I used to be able to do and I can no longer do.
I never realized all the emotional baggage I would have to unpack in order to share my story. I thought it would be easy to tell. I lived it, so how hard could it be to share it with others? Much harder than I ever imagined.
One thing I am not is a quitter, so easy or not, I have a story to tell. I have drawn people into my life story and I owe them more than just the beginning to that story. I owe them the entire story.
If you have been here since the beginning of my blog, thanks for hanging in. If you have just started following my blog, thanks for coming. I hope you take the time to look back to the beginning of my journey.
I plan to continue and finish my story. I hope you enjoy. :-)
And then I stopped. I completely quit sharing my story. There have been countless people who have asked when the next blog post would be. People are really interested in hearing my story and I stopped. I just stopped telling it. I would blame my busy schedule or come up with some other excuse as to why I hadn't written anymore.
In the beginning, I think I really believed those excuses. I just had too much going on or so I told myself. As the weeks turned into months, I knew there was more to it. The deeper I dug into my medical records, the harder it was to relive those years of my life.
I am not an emotional person. I don't like to cry. While pouring over my medical records so I could provided the most detailed and accurate information for my blog, there would be tears streaming down my face.
So I stopped. I made excuses. I put my medical files aside and said I was too busy to write blogs about my life with a disability. When really, I didn't want to relive those hard moments in my life. I didn't want to remember all the things that I used to be able to do and I can no longer do.
I never realized all the emotional baggage I would have to unpack in order to share my story. I thought it would be easy to tell. I lived it, so how hard could it be to share it with others? Much harder than I ever imagined.
One thing I am not is a quitter, so easy or not, I have a story to tell. I have drawn people into my life story and I owe them more than just the beginning to that story. I owe them the entire story.
If you have been here since the beginning of my blog, thanks for hanging in. If you have just started following my blog, thanks for coming. I hope you take the time to look back to the beginning of my journey.
I plan to continue and finish my story. I hope you enjoy. :-)
Monday, June 24, 2013
My Story The Beginning Part Four
I was unable to locate the paperwork for the results of my EMG. I am certain that they showed the electrodiagnostic evidence Dr. David Rankine was looking for because I was immediately scheduled for a muscle biopsy of my right quad.
At this point, I remember feeling like I was just going through the motions the doctors requested of me. I didn't real know what to expect. I wondered if the muscle biopsy would be painful and how long my recover period would be. I must admit I was excited about having a required week of off school.
The procedure was very straight forward. Dr. Alan Odum was to preform an 'open biopsy'. Muscle tissue would be removed through a small surgical incision in my right quad. The muscle tissues would then be examined microscopically to confirm my medical diagnosis.
There is one memory that I still carry with me to this day. I was at Memorial Hospital sitting across the desk from a lady in admissions that was checking me. She was going over the standard information with me. I was verifying my name, date of birth, address, and insurance information. She asked what my religious denomination was. I respond Baptist and asked why she needed that information. She explained all the possible things that could go wrong during surgery. One of those things being death. If I were to die that is why they needed to know my religious denomination.
On January 27, 1998 sitting across the desk from the admissions lady was when it all became real for me. There was something happening with my body that shouldn't be. A doctor was going to have to cut into my flesh to confirm a diagnosis. It was in those moments that I realized more exercise or a better diet was not going to fix what was going on inside my body. This was serious, very serious.
Even though I had been put to sleep and given pain medicine I knew that the normal, carefree girl that checked into the hospital would not be the same one checking out. I now realized that regardless of my diagnosis, my friends and family would never completely understand what I was going through. I wasn't even sure what would happen. The reality slowly began to sink in. As much as my family and friends would be around to support me, no one had any clue what all I would be going through. No one would really understand.
I was completely alone in this journey and alone is a scary place to be.
Thursday, June 20, 2013
My Story The Beginning Part Three
The New Year of 1998 brought many new doctor's visits with it. I started off at the Chattanooga Neurology Associates. Dr. David Rankine saw me on January 9, 1998.
At this point, I was 16 years old and 8 months into my medical journey. I had gotten progressively worse to the point that I had no exercise tolerance and I could not stand for long periods of time. I could only manage steps one at a time.
During the physical examination, Dr. Rankine described me as a pleasant female in no apparent distress. :-) The motor portion of the examination revealed decreased bulk throughout my body. My physical abilities tested between 4- and 5. A manual muscle test is something that is frequently performed. The scale runs from 0 to 5 with + and - along the way. A 5 is considered to be normal muscle strength and is general assessed when the patient contracts the muscle and the test giver cannot 'break' the contraction. (If the patient straightens their knee and the test giver applies resistance below the knee but can't apply enough force to bend the knee.) A 4 is when the patient can complete full range of motion and accept some but not maximal resistance from the test giver. A 3 means the patient can move through full range of motion against gravity but is unable to hold against any resistance. (The patient can straighten their knee all the way while sitting up right but is unable to hold it there when give resistance.) A 2 is when the patient can move the joint through a full range of motion with gravity eliminated. (The patient can bend/straighten their knee while lying on their side, patient is not lifting against gravity.) A 1 is when the test giver can feel the patient's muscle contract but no actual movement occurs around the joint. A 0 means there is no muscle contraction felt by the test giver when the patient tries to contract the muscle.
After a thorough examination, Dr. Rankine's clinical opinion was that I had polymyositis. This conclusion was reached due to my elevated CPK count of over 10,000.
The next course of action was to recheck my CPK level, as well as, do an EMG to see if there was any electrodiagnostic evidence. Electromyography (EMG) is a technique for evaluating and recording the electrical activity produced by skeletal muscles. An EMG is preformed using an instrument called an electromyography, to produce a record called an electromyogram. An electromyograph detects the electrical potential generated by the muscle cells when these cells are electrically or neurologically activated. The signals can be analyzed to detect medical abnormalities, activation level, recruitment order, or to analyze the bio mechanics of human or animal movement. (Wikipedia) If there was electrodiagnostic evidence, I would be required to have a muscle biopsy to confirm a diagnosis of polymyositis.
I don't remember the exact date of the EMG. All I remember is how PAINFUL the test was. The best I can remember, needles were placed at different points all over my body. It felt like there was some sort of electric shock that came through the needles. I would like to think I am a pretty tough girl, but I was crying before the end of the EMG. By far the EMG was the worst test I have had preformed on my body.
I still don't think I was really scared about my future at this point. I was merely going through the motions as the doctors tried to give me a solid diagnosis. I guess I was still thinking it might be an easy fix, like I needed to exercise more or eat different foods. It wasn't going to turn into anything major. There would be a pill I could take or something simple along those lines. All the 'bad' stuff always happens to someone else. Or so you think.
At this point, I was 16 years old and 8 months into my medical journey. I had gotten progressively worse to the point that I had no exercise tolerance and I could not stand for long periods of time. I could only manage steps one at a time.
During the physical examination, Dr. Rankine described me as a pleasant female in no apparent distress. :-) The motor portion of the examination revealed decreased bulk throughout my body. My physical abilities tested between 4- and 5. A manual muscle test is something that is frequently performed. The scale runs from 0 to 5 with + and - along the way. A 5 is considered to be normal muscle strength and is general assessed when the patient contracts the muscle and the test giver cannot 'break' the contraction. (If the patient straightens their knee and the test giver applies resistance below the knee but can't apply enough force to bend the knee.) A 4 is when the patient can complete full range of motion and accept some but not maximal resistance from the test giver. A 3 means the patient can move through full range of motion against gravity but is unable to hold against any resistance. (The patient can straighten their knee all the way while sitting up right but is unable to hold it there when give resistance.) A 2 is when the patient can move the joint through a full range of motion with gravity eliminated. (The patient can bend/straighten their knee while lying on their side, patient is not lifting against gravity.) A 1 is when the test giver can feel the patient's muscle contract but no actual movement occurs around the joint. A 0 means there is no muscle contraction felt by the test giver when the patient tries to contract the muscle.
After a thorough examination, Dr. Rankine's clinical opinion was that I had polymyositis. This conclusion was reached due to my elevated CPK count of over 10,000.
The next course of action was to recheck my CPK level, as well as, do an EMG to see if there was any electrodiagnostic evidence. Electromyography (EMG) is a technique for evaluating and recording the electrical activity produced by skeletal muscles. An EMG is preformed using an instrument called an electromyography, to produce a record called an electromyogram. An electromyograph detects the electrical potential generated by the muscle cells when these cells are electrically or neurologically activated. The signals can be analyzed to detect medical abnormalities, activation level, recruitment order, or to analyze the bio mechanics of human or animal movement. (Wikipedia) If there was electrodiagnostic evidence, I would be required to have a muscle biopsy to confirm a diagnosis of polymyositis.
I don't remember the exact date of the EMG. All I remember is how PAINFUL the test was. The best I can remember, needles were placed at different points all over my body. It felt like there was some sort of electric shock that came through the needles. I would like to think I am a pretty tough girl, but I was crying before the end of the EMG. By far the EMG was the worst test I have had preformed on my body.
I still don't think I was really scared about my future at this point. I was merely going through the motions as the doctors tried to give me a solid diagnosis. I guess I was still thinking it might be an easy fix, like I needed to exercise more or eat different foods. It wasn't going to turn into anything major. There would be a pill I could take or something simple along those lines. All the 'bad' stuff always happens to someone else. Or so you think.
Monday, May 6, 2013
My Story-The Beginning-Part Two
From September to December of 1997 I was just your average sixteen year old girl. I was a junior in high school. I was doing all the normal things that teenagers did. I enjoyed hanging out with my friends and going on dates with my boyfriend. I had my own car, a 1988 four door 5-speed Honda Accord. (I couldn't wait to get my driver's license so when I turned 16, I went that day.) I worked two part time jobs. I was a server/cashier/hostess at Uncle Bud's Catfish House and I worked at Park Grocery Bait and Tackle Store on the weekends. My grades were good with very little effort. All and all I was just enjoying life.
On September 22, 1997, I had the first of MANY doctor's appointments. I meet with my pediatrician so she could look at my knees. She ended up referring me to an orthopedic doctor. Remember, that was back in the day when you had to have referrals and approvals before the insurance company would agree to cover your medical expenses.
On September 22, 1997, I had the first of MANY doctor's appointments. I meet with my pediatrician so she could look at my knees. She ended up referring me to an orthopedic doctor. Remember, that was back in the day when you had to have referrals and approvals before the insurance company would agree to cover your medical expenses.
I am very fortunate to have my medical chart from my pediatrician and copies of most of my other medical records since then. The notes from my chart state that my aerobics teacher thought my knees appeared to be double jointed and worried about that leading to arthritis later in my life.
After a three month wait, I had my first appointment at the Center for Sports Medicine with Dr. Odom on December 15, 1997. During the first visit with Dr. Odom, we discussed the issues I was having. I told him of the difficulty I had climbing steps and the length of time it took me to walk certain distances. I had also starting noticing new problems. If I sat in the floor, I would have a very hard time getting back up. I had to have something to pull up on, whether it be a person, a chair, or a table. I would also fall for no apparent reason. It was almost as if my legs would just give out and with no warning I would hit the floor. Dr. Odom watched me walk and evaluated my strength. He decided we should start with some x-rays of my legs and a little blood work (you can't even imagine how much blood I have 'given away' over the years).
My second appointment with Dr. Odom was about a week later. During this appointment, I was told that my knees appeared to be fine from the x-rays. My blood work showed that my CPK levels were very elevated. CPK (creatine phosphokinase) is an enzyme expressed by various tissues and cell types. Normal CPK values range for 60 to 400. Elevated CPK levels can be an indicator to several different issues, one being muscle damage. My CPK level was 10,457. That's right, my CPK count was 26 to 174 TIMES that of a healthy person.
Dr. Odom referred me to a neurologist for further testing and mentioned I could possibly have Polymyositis or Muscular Dystrophy. I don't think those words quite registered with me at the time.
I honestly just thought my physical difficulties were do to being out of shape. I assumed that it would be an easy fix. I would just have to start working out at the gym a few times a week. Never did I image what the next few years would bring. Even when Dr. Odom said Polymyositis and Muscular Dystrophy did I realize how life altering those two diagnosis could be. That was the naive 16 year old I was. I always just assumed everything was fixable. In the coming months I would slowly realize that not everything was fixable.
After a three month wait, I had my first appointment at the Center for Sports Medicine with Dr. Odom on December 15, 1997. During the first visit with Dr. Odom, we discussed the issues I was having. I told him of the difficulty I had climbing steps and the length of time it took me to walk certain distances. I had also starting noticing new problems. If I sat in the floor, I would have a very hard time getting back up. I had to have something to pull up on, whether it be a person, a chair, or a table. I would also fall for no apparent reason. It was almost as if my legs would just give out and with no warning I would hit the floor. Dr. Odom watched me walk and evaluated my strength. He decided we should start with some x-rays of my legs and a little blood work (you can't even imagine how much blood I have 'given away' over the years).
My second appointment with Dr. Odom was about a week later. During this appointment, I was told that my knees appeared to be fine from the x-rays. My blood work showed that my CPK levels were very elevated. CPK (creatine phosphokinase) is an enzyme expressed by various tissues and cell types. Normal CPK values range for 60 to 400. Elevated CPK levels can be an indicator to several different issues, one being muscle damage. My CPK level was 10,457. That's right, my CPK count was 26 to 174 TIMES that of a healthy person.
Dr. Odom referred me to a neurologist for further testing and mentioned I could possibly have Polymyositis or Muscular Dystrophy. I don't think those words quite registered with me at the time.
I honestly just thought my physical difficulties were do to being out of shape. I assumed that it would be an easy fix. I would just have to start working out at the gym a few times a week. Never did I image what the next few years would bring. Even when Dr. Odom said Polymyositis and Muscular Dystrophy did I realize how life altering those two diagnosis could be. That was the naive 16 year old I was. I always just assumed everything was fixable. In the coming months I would slowly realize that not everything was fixable.
Thursday, May 2, 2013
My Story-The Beginning-Part One
The Beginning
On February 26, 1981 at 10:46 a.m. a healthy baby girl was born to parents Jim and Sheila. That brand new baby girl was none other than me!
Barbara Bliss
I had what most would call a normal childhood. I learned to ride a bike and kept the roads of my neighborhood hot. I played indoor and outdoor soccer, but was most definitely not the star player. My siblings and I swam on the neighborhood swim team for several years.
Towards the end of my middle school days, I stopped participating in sports. It just wasn’t my thing. I was never fabulous at sports and I was completely okay with that. I was more interested in reading, hanging out with my friends, listening to music, and making collages of stuff you cut out of magazines. If you are a child of the early 90’s I know you remember those collages!
My high school days were just as normal as my childhood--school, dates and boyfriends, acquiring my driver’s license and my first car, new friends, and finally a job! I was beginning to focus on my future and what I wanted it to hold. Life after high school seemed so appealing. After all I would be grown up then, right?
During my junior year at age 16, I noticed I was having difficulty climbing the steps for my 6th period class. I would have to hold on to the rail with one hand and support my thigh with the other hand. Some days I felt like I had to pull myself up the stairs with the handrail. I just assumed I was out of shape and a little exercise would solve the problem. So, I signed up to take a step aerobics class at school.
The step aerobics class didn't solve the problems I was having, in fact, it brought them to the front and center of my life. I was so weak that I couldn't even do the 'step' part of the step aerobics class. I would just follow the workout routine without the step.
Walking a timed mile was a requirement of the step aerobics class. When it took me over 12 minutes to walk my mile, my teacher pulled me aside. He told me that he was concerned not only because it took me so long but because I was locking my knees in order to walk. He suggested that I see an orthopedic doctor and have some x-rays done on my knees.
Little did I know then, but that was the beginning of a life altering journey.
Walking a timed mile was a requirement of the step aerobics class. When it took me over 12 minutes to walk my mile, my teacher pulled me aside. He told me that he was concerned not only because it took me so long but because I was locking my knees in order to walk. He suggested that I see an orthopedic doctor and have some x-rays done on my knees.
Little did I know then, but that was the beginning of a life altering journey.
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