In my initial blog post, I offered a brief overview of the events that led to my recent diagnosis of MCTD in November 2024. As we continue, I'll share more details about each experience mentioned in that summary. To start, let's talk about anxiety and depression.
Let's go back to March of last year. I participated in a local Mardi Gras parade with my son and his high school band. After the parade, I felt extremely sore and thought I might be out of shape; marching five miles while carrying six bottles of water for the band seemed too much for me. As weeks passed, the pain in my lower groin worsened. I visited my local hospital twice, explaining that the pain was in my lower groin and radiated down my legs. Both times, I was sent home and told it was likely a burst ovarian cyst due to my history with endometriosis and ovarian cysts. I insisted the pain felt different and was spreading down my legs, but I was told it can "feel different every time." Eventually, I discovered I had bilateral Avascular Necrosis, meaning both of my hips were deteriorating. This revelation came after having all my top teeth extracted and a denture installed with four metal bars the previous summer, and learning that the ringing in my ear, hearing loss, headaches, and facial twitches were due to the death and infection in the mastoid bone behind my right ear. My bones were deteriorating one by one, and I'm only in my early forties! As these issues escalated, I began missing a lot of work. I used up all my ten days of paid time off and was out for weeks at a time, receiving only 60% of my pay on extended sick leave. Many days I missed were a complete loss because extended sick leave only covered consecutive days, not sporadic absences. With increasing doctor appointments, specialist visits, and physical therapy sessions, my income significantly decreased. I've had four surgeries and a TIA (mini-stroke) in the last nine months, including right hip decompression, left hip decompression, PFO heart closure, and a Mastoidectomy.
For months, I managed to ensure my children were cared for, we had a roof over our heads, and transportation. I've been a single mom for fourteen years and have three teenagers. My oldest son graduated high school last year, and I didn't want my struggles to overshadow his achievements. I organized a graduation party for him, and despite having just had surgery, I attended his graduation with a big poster, cheering loudly. I held it together through his going away party and moving him into the dorms at LSU on a full scholarship. I was in pain, but I would do it all again. I was so proud! However, privately, I was falling apart. Between the constant pain, nights spent in hospitals, ongoing recovery from surgeries, trying to keep up with work, attending to my kids' needs, and losing consistent income, I felt disconnected from myself. I fought hard to maintain everything I had built. I used apps like Dave and Earnin to borrow money after every paycheck. I ended up living off these bi-weekly loans, with my paychecks going to repay them so I could borrow again. I received donations from my school, church, and friends to pay off the loans, hoping to get back on track, but then I had a mini-stroke in October, causing me to miss more work. This led to taking out more loans, and I found myself in the same cycle. The trailer I purchased in 2022, which we loved because it was the first time in a long time we didn't have to use the living room as a bedroom, and the second car I bought for my son and daughter are both gone now. The loss of income, payday loans, mounting hospital bills, and $40 co-pays for each specialist visit took their toll, and in December, I moved into my brother's spare bedroom. I had to voluntarily repossess our home, and my second car was repossessed. I'm forever grateful to my brother and his wife for taking us in and providing shelter, but I've never felt more like a failure as a parent or person. My children are separated, with my daughter living with her father, while my two boys and I stay at my brother's house. My oldest is at LSU during the week but comes home for weekends, vacations, and summer, sleeping in my closet (though it's quite spacious). After summer, he'll be home full-time, switching from on-campus living to a full-time online option.
With everything happening, I haven't had much time or energy to focus on maintaining my friendships and other relationships. I feel like I should message all my friends to apologize for essentially disappearing this past year and for not having much to discuss beyond my health and upcoming surgeries. My mind is so focused on recovering, getting through my hip replacements, keeping my job, and preparing to get us into our own place once I'm past the recovery stage of my surgeries that it's difficult for me to think of other topics, so I just don't communicate. I was recently seeing someone, an amazing man who supported me through my last two surgeries and recoveries. Even though he is wonderful and I had feelings for him, I couldn't get "there," and I had to make the tough decision to do what's best for both of us. I was okay with the idea of letting someone else in and not doing all of this alone; it was a nice thought, but I was stressed about finding time for him between my kids, work, my pain, and my general lack of energy. Then, I had a really bad day where I got bad news about my health, my son's living situation at college, and my personal life, all on the same day. I don't know what happened, but something inside me just switched "off." The feelings I had been developing for this wonderful man were suddenly buried under all this other stuff, and it was like I had no access to them. I completely shut down and began thinking that maybe it would just be easier to stop trying to find answers, stop trying to get back on my feet, and stop trying to get better, and just let nature take its course.
My children inspire me to keep pushing through, and I couldn't allow myself to remain in that dark place for too long. I turned to my faith and accepted a challenge my pastor had given us before. For seven consecutive mornings, I started my day by listening to inspirational music on my way to work and praying about my situation. I don't know why it helped, but it did. I've continued this practice for almost a month now. I still find it hard to want to do anything beyond what's necessary to keep my job, care for my kids, recover financially, and manage my pain. I believe I'm likely in "survival mode." This prompted me to start my blog, as I need an outlet beyond my usual circle of friends and family where I can express my complaints, hopes, and struggles without guilt. I recognize that others face challenges like cancer, homelessness, and lack of family support, and I know I'm fortunate compared to some. I feel guilty for feeling down, but the truth is, I do.
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