In July of 2011, I noticed a streaky, oval shaped rash in the center of my back. I didn't feel like myself. I had a bad cough, flu like symptoms, and I had fainted on my first day of work. I didn't think much of it though. About 2 weeks later I was feeling back to normal and continued enjoying the remainder of summer.
Towards the end of August, I moved to a new town. It took a month for me to be enrolled in school. It was a major change and took a lot of getting used to since I didn't know anyone. In October, my previous symptoms came back with vengeance. It started out with intense migraines. Along with the migraines came nausea, fatigue, and insomnia. I was under a lot of stress during this time as well. Struggling in a new school, while my dad was in the hospital with health issues of his own. I told my parents about my symptoms and went to my regular doctor. She ran blood tests, and called back with the results a week later. Everything was normal, but something showed up on the Western Blot test, used to detect Lyme Disease. She recommended that I see an Infectious Disease Doctor to have the test done again and have a "specialist" look at the results. This Infectious Disease Specialist told me I was positive, but he wanted to run the blood test again just to be sure. If it came back the same, he told me I would be started on an antibiotic. When I came back, I was told it was a "false-positive." I was so confused and wasn't being given any answers. I went home and researched Lyme Disease for myself. I learned about what a controversial disease this is, the faulty testing and disbelief. I watched a documentary called "Under Our Skin." It was an amazing eye opener for me, and I recommend that everyone watch it. It gave me a strong understanding of what I could possibly be dealing with.
I felt myself worsening.I continued going to follow up appointments with the Infectious Disease Doctor, and saw a neurologist. I got a CT scan of my head, everything was normal. The neurologist refused to give me medication for migraines until I see a psychologist. She said to me, "Well, be thankful you don't have a brain tumor sweetie." She was completely unprofessional, rude, and not compassionate. I never went back to her.
In the duration of this time, I was constantly missing school. Waking up in the morning nauseous, and unable to get out of bed. I missed about two months of school, after only being in school for about one month. No one really believed that I was in pain, and sick. I could tell my infectious disease doctor was getting annoyed with me. For a while, all he did was draw blood, run tests, and repeat. He recommended I see an Adolescent Medicine Doctor that specializes in Chronic Fatigue Syndrome, a Cardiologist, as well a psychologist. Since nothing showed up in my blood work, he assumed it was an emotional problem. Anyone that saw me on a daily basis could tell something was wrong, and it wasn't in my head.
I had an EKG and a sonogram of my chest. Everything seemed normal, besides low blood pressure. This doctor didn't want to give me the Tilt Table Test to see if I had POTS (Postural Orthostatic Tachycardia Syndrome) unless symptoms persisted. I was given an article about fainting spells and was sent on my way.
Unwillingly, I went to the Chronic Fatigue Specialist and started seeing a therapist. The therapist said I'm not depressed, I'm sick. The Chronic Fatigue Specialist told me to get a second opinion for Lyme Disease. The second opinion doctor said exactly the same thing as the first one. It's like they were robots and all programmed to say the same thing. My new neurologist prescribed medicine for migraines, but overall told me I'm going through a "phase."
I feel like I created a trap for myself. I never want anyone to feel uncomfortable around me. I don't want people to sense how badly I'm feeling either. It's embarrassing, and as you can tell, too difficult to explain to everyone who asks, "What's wrong with you?" I can't expect an understanding reply. This is why it's called an "invisible illness." I'm invisibly sick. My exterior is normal. Healthy looking besides paleness and dark circles. Only people who see me every day or every week see a change. Everyone takes things so for granted, like getting up in the morning and having breakfast. I've become very appreciative of my good days, since they seem to be lessening. I wish I had solid, tangible proof that I'm sick, I'm suffering and I need help. I ache, I'm exhausted but the only thing I can do is keep my chin up and smile.
This is what I live and breathe every day, so I've tried to make the best of it. I know I'm not in this alone. I know one day I'll be healthy again, but until that day I'll keep writing, sharing, and fighting for my answer.
-Dani
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