Before I was diagnosed, I lived what most people would call a normal life. I worked full-time, was involved in all my kids’ activities, attended church regularly, enjoyed date nights with my husband, drove where I needed to go, and cooked for my family – I had no idea that there would come a time when I could no longer do these things.
Around 2009 I started noticing some changes in my body that I couldn’t explain. First, there was stiffness, which made it hard for me to move and stretch. I’d have my husband stretch my body multiple times a day, only for my body to go stiff again after he finished.
Next came the headaches, and it seemed like no medication would take them away. I then started feeling fatigued and would sleep long hours and sometimes days at a time. Confused by everything going on, I started keeping a journal of all my symptoms and included meals and activities each day, as I tried to figure out what was going on with my body.
My primary doctor ordered bloodwork, and everything was normal. Next, I was referred to a rheumatologist who ordered an x-ray, but still no answers. My husband took me to Maryland for a second opinion from another rheumatoid doctor. But again, there were no answers. This left me so frustrated as I knew something was wrong and felt like the doctors thought I was making things up.
One day while watching television, I noticed something was wrong with my vision. I closed my right eye and my left eye vision was fine, but when I closed my left eye, my right eye was very blurry. I didn’t think it was related to anything I was going through, I just thought I needed glasses, so I made an appointment with my eye doctor.
Even with the glasses, I continued to experience blurriness, so I was sent to a neuro-ophthalmologist for further testing. I failed the first test so horribly that he couldn’t believe the results and had me repeat it. The second time was better, and I explained that the blurriness happened periodically., but he refused to proceed with an MRI.
Finally, my primary doctor sent me to a neurologist and my first appointment took place over a year after my symptoms first started. I shared my journals with him and explained the stiffness, headaches, and vision problems. He completed nerve testing which showed carpal tunnel syndrome in my right hand and saw something in my neck but could not complete the testing because of the spasms I was having. In December 2010, I was prescribed Lyrica.
On my first night of taking Lyrica, I had a seizure after waking up in the middle of the night to go to the bathroom. I added that to my journal, and even when I stopped taking the medication, the seizures continued. The next month I had a dentist’s appointment, and as I told him about my symptoms, he stopped me when I described the blurriness in my right eye. He immediately told me to contact my neurologist to have my brain scanned.
The neurologist refused to prescribe an MRI, even after I explained the seizures I experienced. Defeated, I continued to experience seizures more regularly. One day while planning to attend my daughter’s basketball game, I had multiple seizures, and my husband Matt wanted to take me to the emergency room. I insisted that I couldn’t miss Jenia’s game as I didn’t want her to worry, so we attended the game and then dropped our children off at my mother-in-law’s house before heading to the hospital.
While I was in the ER triage, I experienced another seizure and was rushed for a CAT scan. The results showed I had a tumor in my brain called Meningioma and the surgeon was on his way to speak to me. Dr. Lee Bono confirmed the tumor was benign and in a good spot for him to remove it, and informed me the surgery would be the next day. Shocked, I looked at my husband and instructed him to call my mom and my friends. I didn’t want our children to know until after school the next day as it would be the weekend.
I was finally scheduled for the MRI I had been requesting for months. I told the doctor my pastor would need to pray over me before the surgery. I had a room full of pastors and their wives who prayed over me, and I felt at peace that everything would be fine. When I woke up from surgery, my best friend was there with me. As I tried to speak, no words came out. The nurse was upset and said I shouldn’t try to talk because my brain was swollen and needed to relax. When my children came to visit, I tried to speak their names, but I couldn’t, and my son was so upset at my condition that he left the room.
My doctor advised me the tumor was the size of a grapefruit and if it had grown only millimeters more that I would not be alive. They had to leave a sliver of the tumor in, about the size of a nail clipping, so that I didn’t have a stroke during the surgery. I was in the ICU for three days and then was transferred to the therapy floor to learn how to walk, talk, and build up my strength on my right side.
I spent twenty-one days in the hospital, including my birthday. My husband brought my Bible and laptop. I couldn’t sleep and was still having headaches so I would listen to DeWayne Woods’ song “God Still Heals” on repeat. That song kept me calm and soothed my soul. Even though I could not speak, I would open my Bible and write Isaiah 40:31 down on a piece of paper daily: But they that wait upon the Lord shall renew their strength, they shall mount up with wings like eagles; they shall run and not be weary, they shall walk and not faint. Love and prayers were abundant from people that came to see me while I was in the hospital – eventually, I was moved to my own room. When I went to therapy I got dressed up and did my hair so I could feel as normal as possible.
After I was discharged, I went to rehab each weekday, getting picked up at 8:30 am, and ending my day at 3:00 pm. I had speech therapy, music therapy, cognitive therapy, occupational therapy, physical therapy, and saw a psychologist. I knew getting my speech back would help me feel more normal, so I advocated for sixty minutes of speech therapy over the thirty minutes initially scheduled, but it was broken up into two 30-minute sessions.
There were many physical difficulties I experienced as a result of the surgery and rehab. I developed Reflex Sympathetic Dystrophy (RSD), which is now called Complex Regional Pain Syndrome (CRPS), which is a form of chronic pain that typically affects an arm or a leg after surgery, an injury, a stroke, or a heart attack. The pain is out of proportion to the severity of the initial injury, and I had it in my right arm, leg, and foot. Taking a shower would bother me, as would the bed covers, or even my family hugging me.
I also had to wear a brace because the muscles in my back near my shoulder blade were weak. I walked with a cane and had to get a custom insole with a lift for my foot, and a brace in my shoe to help with walking. I took Lyrica and Cymbalta for pain. As I improved, my therapy was reduced to two or three times a week. I became friends with a guy named Jerry, who saw me reading my Bible and Daily Bread devotional. We would have discussions about the Bible, and he gave me a paraphrased Bible as a gift. Through everything, I always gave praise and honor to the Lord and wanted to let my light shine and encourage others.
I spent about two years in therapy and was still in and out of the hospital having seizures. I also developed a sensitivity to noise. I remember we went out on Mother’s Day, and I could pick up the different conversations around me, along with the phones ringing – and the clanking of plates and silverware, which eventually overloaded my brain. I had to leave and sit in the car. I also required special earphones while at the movies.
I would have crying spells throughout those two years of rehab. It was hard to control my emotions and I had no idea what was going on with me. I would ask my husband to take me to his mother’s house so she can lay hands on and pray over me. Due to the pain I was experiencing, I had a morphine pump for four years, but eventually decided to have it removed and I would just deal with the pain.
God has seen me through everything I’ve experienced, and even though it took a long time, I never stopped believing that I would get better. The Bible says by Jesus’ stripes I am healed. I always carried that with me, pushing myself even when family members thought I was doing too much.
Today I can truly say I am healed! I can talk, cook, clean, and drive; I walk or run between six and ten miles with my dog. I have a part-time job and I help care for my mother. I still have some limitations, but most people would never know anything was wrong with me. I thank God for his amazing grace and how He’s kept me and pulled me through all those tough times. I KNOW God is with me and He will never leave or forsake me.
Prayer for Moms:
Heavenly Father, I come before you now and I ask you to just touch anybody that has had an illness or condition they have been diagnosed with and feel it is overwhelming. I ask that you give them peace that passes all understanding, and they rely on you for all and everything that they stand in need of. I pray they will never forget that you are their Physician and Healer and that all they need to do is stand on the promises in Your word.
In Jesus’ name, Amen.
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