Months without meds. That was my option when I lost my insurance. I had felt the best I have ever felt since being diagnosed with Lupus in 2008. Every day I woke up early and was stable to work 10-14 hours daily plus be a doctoral student. One day, my husband lost his job and things changed drastically and rapidly. We had to make choices and unfortunately one of the things we could no longer afford was my insurance which meant figuring out the medicines. How would we pay for my doctors and medicines? Thinking I could do without, I set out on a mission for 3 months to try and cope without them. The withdrawal was not the worst part of it, but rather the extreme pain that returned. The inability to use my hands again. The sleepless nights, the nausea unavoidably daily and throughout the day. Walking became difficult once again. The crying was daily. I lost my weekends and I was back at ground zero. Lupus at the beginning with the symptoms of memory loss, memory confusion, consistent flare-ups and unbearable pain.
Comfort: Dave is my hero! He helped me through it all. He cried with me. He didn’t say anything. He just held me and cried as his diamond was breaking.
Michelle: She sends me daily encouragement to keep going. A pillar is what she calls me. A pillar. I feel like a pebble.
JD: He prays over me and doesn’t say words because we all know that words no longer bring comfort. My family knows me, loves me and walks this daily journey of living with Lupus daily.
My mom: She keeps the trash can close, towels for the fevers.
Lupus does not leave my side for a day and when the meds were far from my reach I broke and realized my body can’t do it all. I can’t work full time and have Lupus without my chemo and treatments and the 6 years my body has adjusted to medications that help me live, cope and heal.
So, we cut back even more financially. My career has provided the pathway to provide my medicines. Not exactly my shopping preference but it sure has been bringing me stability and I feel safe again.
Homeopathic isn’t for me. My body rejected every organic remedy I tried.
I am thankful that I am back on chemo as of Sunday March 26th, 2017,. Little by little all the medicines are being purchased and back in my body. What an instant difference. I’m so thankful for modern medicine, for doctors….
What makes it difficult is not understanding how as a middle-class citizen I have to pay thousands for medicines and I work so hard, you have no clue how hard and how many hours I work just to provide my own medical treatment… yet our government has nothing for someone like me who truly needs insurance. For me alone it’s over $500.00 monthly plus my treatments are not covered. They are called third level, extra…..
I have so many thoughts about what the government has done and how it has impacted me. I can’t even begin to express my disappointment.
So for now, My daily battle with Lupus is getting back on track with the expensive journey of being a private self-pay individual.
God loves me and I am thankful that I have a job that helps me pay for my medications. I do know I never ever ever want to go through what I went through in the last 3 months. Here’s to a better way of life with the medicines that my body needs to function. May these always be affordable and may the chemo enter my body quickly. Rewind the last 3 months and I’m back. That is great news and a wonderful hope for my family.