Tuesday, March 1, 2016

What Lyme Actually Looks Like

Throughout the time that I've been sick, I've kept pretty quiet about what I'm going through, but after flipping through the channels today I decided it was time to break my silence. I never want to be perceived as negative or whining or become burdensome with my posts, so I avoid talking about what I'm going through. With an invisible illness, it is so easy for those on the outside to judge. However, when any friends or family ask me directly, I am honest. I will tell you if it's a good day or a bad day and exactly how I'm feeling.  

Today, I saw Yolanda Foster on Dr. Oz and felt so angered by the portrayal that I needed to speak up. Many of you have tagged me in posts about Yolanda and her struggle with Lyme and I am always excited to see someone who can bring chronic invisible illnesses into the forefront. However, Yolanda's fight with Lyme is not realistic. It is not the fight that most people diagnosed (or undiagnosed) are going through. She is blessed to have the money to pursue any and all treatments she wants and needs.  

The show went through a typical day in her life, starting with an in-home treatment room with a nurse there to administer it. She followed that with a meeting with her health "advocate". Basically, she is an assistant who's job it is to keep track of Yolanda's appointments, treatments, and options. She organizes all her medical info and keeps things straight.

From there, she goes to the physical therapist. Because of how much time she has spent in bed from Lyme, her muscles have atrophied, so she sees the physical therapist that treats the LA Clippers for personal, one-on-one treatments.

Afterwards, she heads to yet another doctor for pain treatment.

When Dr. Oz asked her how much she had spent on treating her Lyme, she responded that she didn't know. She simply said that it was much more than it should be.

This is as far as I got through the episode before I was so enraged that I couldn't handle it anymore. This is not real. This is Lyme if you are privileged enough to have the money to fund all these treatments without worrying about insurance coverage.

So, let me shine a light on the reality of Lyme disease for an average person. Prior to having a relapse of symptoms, my wife and I were both working full time, paying all our bills, and able to have some money leftover for date nights and fun spending. That changed literally overnight.

I went to my PCP first. He was the one who first diagnosed me with Lyme, so I had high hopes for getting the help I need. He ran a blood test and put me back on doxycycline. Unfortunately, the blood test came back negative. This is very common with Lyme, as testing is very inaccurate. Because of the negative test, my doctor talked to me as if my symptoms were no longer real, and that maybe I was being dramatic or it was in my head.

What I did learn was that the blood test he ordered was not covered by my insurance. It has been almost a year and I'm still paying off that bill.

From there, I sought out what is referred to as a Lyme-Literate Medical Doctor. The closest to me was in Pennsylvania. So every two weeks I would get a ride up there, he would check in on my symptoms and how I was handling the (expensive) prescriptions that I was taking. He told me that I'd be a good candidate for an IV treatment, which is more aggressive and effective than oral antibiotics, but my insurance wouldn't pay for it, so that's out of the question.

Nothing worked, and I was running out of resources. From there, I had to just learn to manage my symptoms. I went to physical therapy for my pain. I had back injections. I saw a endocrinologist. I saw a pulmonologist. I saw a cardiac specialist. Doctor after doctor.

And then I had to stop.

I have been out of work because of being so sick, and our wallet was hurting. We had to give up our apartment and move in with my parents so that we could afford to live and so that my wife could get help with taking care of me. Our bills are piling up higher and higher, and nothing had changed. Nothing was getting better, but our finances were plummeting. I had to put our financial health above our physical health. I had to take a break from all of my doctors and treatments so that we could catch up on the bills we have, unless we wanted a lot of debt and no hope of ever buying a home.

This is Lyme Disease. It is dealing with symptoms and pain and other sicknesses on your own because you know you can't afford another hospital or doctor visit. It is dreading the mail every day. It is crying because you don't know how you're going to keep going. It is feeling as though maybe it is all in your head since no one else can seem to understand.

So, thank you Yolanda for speaking out about your disease, but please remember the rest of us. Remember those of that are struggling just as much physically, but without the means to pay for it.

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