During my senior year of high school, I started to notice some changes in how I felt, and in how well I was able to concentrate. At times, I felt as though the whole world was fuzzy and that I was walking on marshmallows. Other times, I was in so much pain from severe migraines that I had to stay in bed for days at a time. I also began to have terrible pains in my lower back and abdomen. I did not talk about the pains in my back and abdomen, because I was a shy girl, who did not want to see a gynecologist, nor even talk about female issues.
I was living with my grandmother when all these changes started to take place, so she and I resolved to find out what was wrong. My dad had juvenile diabetes, so my grandmother assumed that was a good place to start testing. We went to see our family doctor, and he agreed to run some tests, starting with diabetes.
I had a glucose tolerance test that came back from the lab as positive. When I went to see a diabetic specialist, however, he ruled out diabetes. He said on a scale of 1-10, 1 being most severe, I was an 11. No diabetes whatsoever. Glad as I was that I did not have diabetes, I was frustrated to be back at square one.
I graduated in May of 1997, and exactly one week later on my 18th birthday, a big piece of the puzzle was solved. I was sitting at my grandmother's kitchen table eating my absolute favorite breakfast of sausage gravy and biscuits, and talking to my brother Joshua on the phone, who was singing me "Happy Birthday." Then I blacked out.
The next thing I remember was laying in my bed as my grandmother was putting a clean shirt on me. I was demanding of her, "Who are you? Who ARE you? Where am I?" I was very disoriented and dizzy as I sat up and saw an ambulance pull up in the street. A paramedic came in and calmed me down. He told me that I was safe, and began to ask me questions.
"What is your name?"
Pause. "Kim."
"What day is it?"
"I don't know..."
"That's ok. How many days in the week?"
"Seven."
"Can you name them?"
"Monday, Tuesday, Wednesday, Thursday, Friday, Saturday, Sunday."
"Who is the president?"
"George Washington. No, wait. Bush."
The paramedic explained to me that I had had a seizure and that I had to be taken to the hospital. Later, my grandmother told me that I had gotten on the phone with my brother, screamed, threw my spoon and the phone, then collapsed under the table with a seizure. She called the ambulance, and I became conscious as she was dressing me.
It has been 12 years since my first seizure, and about 11 years since I was officially diagnosed with epilepsy. After the first year of learning how to live with epilepsy, I really have not had a hard time of it. I have learned how to take care of my body so as to prevent seizures, and have found a medicine that keeps almost all of my seizures at bay. I am well enough to drive and function with a mostly normal life. The main difference that has taken place with me is the need for rest, avoid over-stimulation such as flashing lights, loud noises, and strong smells (the mall at Christmastime is a nightmare) and need to handle stress properly--or else have a seizure.
I got married at age 23 to my wonderfully supportive best friend and soul-mate. After four years of marriage, we decided to try for a baby. After a few months, I decided to finally tell a doctor about the abdominal and back pain issues that I had become accustomed to and thought were normal. At age 26, I had my first laprascopy for endometriosis, and was diagnosed with endometriosis and irritable bowel syndrome. The doctor also suspected adenomyosis, but that could not be confirmed without dissecting the uterus. Since I was under 30 and wanted children, a hysterectomy was out of the question. I was eventually declared infertile, and saw a fertility specialist.
In the meantime, I was also diagnosed with pityriasis rubra pilaris (PRP), a rare skin disease. Thankfully, that diagnosis was overtuned, and replaced with "acute eczema." At any rate, I always have rashes splotched on my arms and legs than never go away. Sometimes the rash spreads to my face and back, but those patches seem to go away.
So like I said, epilepsy is no fun, but it's also no biggie for me. Endometriosis was also no fun, but it's not deadly. Virtually everyone I know has eczema of one degree or another, so that is no biggie.
When all of those diagnoses are placed on one sheet of paper along with a venous angioma on my brain and adjustment disorder, I am what you call "uninsurable." None of the conditions I have make me eligible for disability, but all of them together make it nearly impossible for me to hold a steady job. I can't get insurance, even though to look at and talk to me, I am just as healthy as any other 30 year old woman. People would never know to look at me that insurance companies run from me, and doctors are puzzled by me.
I have already stated that this is no biggie for me, so why bring it up at all? Well, to be honest, sometimes I just plain hurt. Other times, I am just so wiped out from something simple such as going out to eat in a place with ceiling fans. And everyday I have to live with the very real fact that I have very real limitations. In short, having chronic illness and pain is exhausting and humbling. Sometimes, it is scary. With my abdominal pain and back pain returning with a vengeance, I struggle with the fear that my daughter is the only child I will ever have.
I used to pray that God would heal my body, and I still have hope that someday He might.
In the meantime, I rejoice! It's not that I like illness or pain. No, but I am thankful to God for the lessons I have learned and am learning. I am thankful for the experience of hours and hours conversing with the Lord about it. I am overwhelmed that He has a record of every tear I have ever shed, and that I am His child.
As I hold my daughter when she is sick and feeling miserable, I cannot help but muse that God has held me close to His bosom at times when I was miserable. In fact, His arms never tire, and He never puts me down.
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