At Partners in Care we serve many individuals with complex care needs. Every now and then we meet someone whose needs are particularly complicated, and whose situation touches our hearts in a new way. One such person is Karla, who has stage 3 Lyme Disease, amongst other issues. This is her story.
“I was 30-31, when I started to get sick. Before that I lived a normal life. My first set of doctors didn’t listen to me. They kept telling me it was depression and anxiety, which I knew it wasn’t. I finally went outside of network to a doctor who listened and cared. He ran the appropriate tests, everything started coming back abnormally. My previous insurance was through my employer, but thankfully I was able to get new coverage through the Exchange. I switched to a major CA statewide health plan. Unfortunately, by the time I switched insurance and saw a ton of specialists it was too late. I had to have surgeries to remove body organs because they couldn’t save them.
My first surgery was my hysterectomy, so I can never have kids. Then my heart went out, so I needed a pace maker. I finally got diagnosed with stage 3 Lyme Disease. I wouldn’t wish this on my worst enemy. Lyme Disease attacks your joints, your mobility, your breathing, your heart, your brain. I have light sensitivity, so my house is always dark. You get to a point where you find a happy miserable. You’re always kind of miserable because you’re in permanent pain – you can look fabulous on the outside, but on the inside you’re dying, literally. The latest thing is that I need a defibrillator because my heart is going lethal. I also tested positive for Bartonella, and because my previous doctors didn’t treat it properly, it developed into Crohn’s Disease. If doctors don’t get it right at the beginning, it leads to 20 other things along the line.
When my heart went out, I got assigned a case manager by my health plan. She’s amazing. She makes sure that everything goes smoothly. My case manager referred me to Delia at Partners in Care, and she brought me all kinds of resources. She referred me to quite a few support groups, one that deals with major trauma, which has been great, and another one that’s online, which works better for me because my schedule is crazy. Then there’s another site that helps you raise money to help pay for medical expenses. She came with a list of things. With Crohn’s Disease, you can lose control over your bodily functions. So I needed Depends and pee pads – honestly, it’s my nightmare. She referred me to places where I could get them at a cheaper cost. She also gave me a card to help me cut the cost of my medication in half – at CVS. She really was wonderful. She was patient and she listened. Delia, and my case manager were a really great team. I’m very grateful to both of them for the help they’ve given me. When more diagnoses started coming in and I couldn’t drive, I called my case manager and requested Delia again, because I knew she could help me. She gave me resources for transportation. I use Access. They’re good. I just never pictured in a million years that I would need it so young.”