God Has Brought Me Through It All
“But you don’t LOOK sick” is something that I hear all the time and a battle I fight with this invisible illness. It’s difficult when people can’t tell that you have an illness, but I’ve learned to cope and overcome. On the one hand, it’s a good thing to not look sick, but what happens is that people find it hard to believe you are sick. It depends on the circumstance, but sometimes that means that people build expectations of you based on how well they think you look, when in actually you may not feel well at all. Sometimes I don’t feel like going into the explanation about the disease and how it affects me, because many of these diseases affect everyone differently. I often run into people I know, one of the first things they will say, after asking me about how am I doing, is you don’t look sick. I believe they mean it as a compliment, but at times I don’t want to hear it and sometimes I want to scream, but you don’t know how I feel. You don’t know the pain I’m in, the sleep I’ve lost, the confusion over what to do, the medications (with severe side effects) that I have to take, the doctor visits and medical tests I have scheduled, the overwhelming lethargy, the fun times and events I have to cancel because I don’t feel up to it, and the ongoing battle fought with this invisible illness .
There are certain things that really helped me through some difficult times. I remember those times by certain events. I loved basketball and Magic Johnson was one of my favorite players. The day he announced that he was HIV+, I was in the hospital because I had a severe asthma attack and was under treatment. The strange thing for me was that I was diagnosed with asthma as an adult. It was so hard for me to believe. I thought asthma was a childhood disease or one that developed in childhood continued into adulthood.
In addition to asthma, I had allergies, Sampers Triad, severe sinusitis and lots of inflammation. My sinuses were always clogged and congested, along with my ears and my throat. After many doctor visits and tests, I had sinus surgery to remove the polyps and so the cycle of surgeries began and to date I have had four sinus surgeries. The surgeries would give me little to no relief at all and so the cycle began again. I had to endure tubes being put in my ears to no avail. They had to come out in less than a month because of the thick mucus and congestion. I was taking allergy shots for years and reached the highest level and things still persisted. The only treatment that worked consistently for me was when I was given steroids.
One day my doctor sent me to be tested for sarcoidosis. The biopsy of one of my lymph-nodes came back positive. It’s been a tough struggle since the diagnosis. Sometimes it’s hard to determine what’s happening. Is it the sarcoidosis, sinusitis, allergies, or all three? Doctors don’t seem to always know and physically things continue to manifest. The sarcoid spread to my salivary glands causing them to bulge and hurt, and I had to have them removed. I have a collapsed lung and walking upstairs has become difficult. Some days are harder than others ,but I’ve learned to cope taking life as it comes. I know a few other people who were also diagnosed with sarcoidosis, but the disease affects us all differently and affects different parts of our body. Sometimes it’s difficult to understand, as well as difficult to explain.
God brought me through many experiences. I went for a liver biopsy as directed by my physician and once on the table, they did a sonogram so the doctor could pinpoint the spots on the liver to target for the biopsy. He had me turn all kinds of ways and he called in other doctors because he could not find could not find any spots on my liver. He then said he would look at the spleen although he really didn’t want to biopsy the spleen because it is a different type of organism. (the previous test indicated spots on both the liver and spleen) He could not find anything on the spleen either. He then said he would confer with my doctors and to go home because there was nothing to biopsy. To this day, I give God the praise.
There are three things that keep me going and they have for all of the years and all of these experiences. The first one is prayer and my faith in God. I love God, love to pray and study the Bible. I am always reminded of God’s faithfulness and grateful that I’m still here. Of the three people that I know personally that was diagnosed with the disease ( sarcoidosis), only one is still alive, so I am grateful to still be here. I can’t explain why in one circumstance the doctors couldn’t find what they said was there and therefore no surgery was needed, but in other circumstances surgeries were needed. All I know is that I love and trust God and He is working it out for my good.
The second thing is writing. I love to write anything and everything, but especially poetry. As a young introverted, self conscious and shy girl, my 8th grade teacher told me that I have a creative writing ability. When I write I can release my thoughts, clear my head and say things I wouldn’t normally say. It’s my way of being creative, having a voice and creating my legacy. Writing empowers me!
The third thing is music. I grew up with a father who loved Jazz, an uncle who was a musician and a family who played music all the time. If I am in a bad or sad mood, music can turn that around. I love listening to all kinds of music, especially gospel and set aside time to do so. Music moves brings out all kinds of emotions and brings back memories. Music calms me and takes me away from it all.
So when I am not feeling well or get really sick, I will do what I need to do. First I will pray , listen to music and try to write. Those are the things that help me through these difficult times and help me to fight the battle with this invisible illness and all other obstacles in life. I pray they will help you too.
