This week we asked our friend Jennifer Walzer Berkowitz to contribute her voice to our community. Jennifer has been battling Lyme disease for years and we are so inspired by her resilience and strength. We know you will be too:
In June 2002, I was at a retreat in the Catskill Mountains in upstate New York when I suddenly came down with a horrific headache, stiff neck, fever and facial pain. When I went back to New York City (where I resided at the time), I went to go see an infectious disease doctor. She told me that since she didn’t find a bullseye rash on my body, I couldn’t have had Lyme disease and sent me on my way without even taking my temperature or doing a blood test. I continued to suffer and was then diagnosed with trigeminal neuralgia. As the years passed, other parts of my body started to deteriorate, but no one seemed to understand what was happening to me. I was a very healthy 29-year-old before my nightmare started. As time wore on, my thyroid started to give up and I started to have severe nerve pain all over my body. Then my cough appeared and caused me to not be able to speak or eat without severe choking spasms. 3 different ENTs told me that it was just GERD and kept me on GERD meds for 6 months. Even after thorough gastro type testing and finding no GERD in my gastric system, doctors still believed I somehow had it. My right vocal fold became completely paralyzed, I started having vision problems, and at one point completely lost my vision. I had 6 of the top eye doctors in the country all puzzled by my changing condition. I traveled all over the country to see various doctors and no one seemed to figure me out. Some told me it was in my head and sent me on my way. Others thought it might be the beginning stages of MS, but that “it just hadn’t manifested itself yet”. Finally, just a few months ago, at the age of 43, it occurred to me that I might indeed have Lyme since I spent so much of my life outdoors and spent a lot of time in a tick-infested area when it all started.
I found a Lyme-literate doctor and had him test my blood. And sure enough, I was EXTREMELY positive. When they did a spinal tap on me, it was also found in my spinal fluid. So it was very clear that my Lyme had become a whole central nervous system/neurological Lyme condition.
I was told I needed to immediately go on medication and that I most likely needed to be on an IV. I was very nervous about the idea of having a PICC line so I asked if we could start with some oral medications first. We went that direction and although I started to get a little better, my issues were too strong to treat with just oral medications. In October 2016, I went to the hospital to get my PICC line inserted.
That’s when I came across Care+Wear. I have 2 young boys and I know that this PICC line would have to be protected the best way I could. So I did some research and came across the Care+Wear site. What I loved so much about the bands were that they covered my PICC line but still let it “breathe”. And because they come in great colors, I noticed it looked like a sports band and it could look like I am just carrying around my ipod on my arm. The Care+Wear band has been a lifesaver for me because it’s so comfortable and yet keeps my extended tubing snug in place. I wear mine for an entire 24 hours until my next daily IV sitting and then I put on a fresh one that I washed in my washing machine (I lay them out flat per the instructions on the package). My 2-year-old likes to tell me what color my “boo boo” is every time I finish my IV and put a fresh band on. I am so obsessed with these bands I think I have almost every color they offer! My personal favorite though is the camel color because it blends nicely with my skin color. I also love the fact that I never have any marks on my arm when I take it off for my next IV infusion. These bands truly fit me perfectly.
I just found out that my niece who is also suffering from Lyme will be getting her PICC line inserted after Thanksgiving. I have already told her to get some bands in advance so that she can immediately wear it home from the hospital (I plan on sending her some once I know what colors she wants). The gauze that is given at the hospital doesn’t work well because it makes the plastic pieces stick out. She was nervous about how the line would look on her arm, but after seeing how great the bands look and feel on me, she is happy to know that she will be comfortable during her tenure with her PICC line.
Thanks to the Care+Wear team for making my life a little easier during this stressful time.
We are committed to making sure that the patients with PICC lines or ports feel more like people and love hearing when we have succeeded in our mission. Thank you, Jennifer for sharing your story with us! If you would like to share yours, please don’t hesitate to reach out to firstname.lastname@example.org.