As I awoke today, I slipped on real clothing (not my norm of pajamas). I was to be on the Assisted Living Facility bus by 11am for my 12:15pm new patient Neurology Appointment in St. Petersburg.
I began crying, ever so slightly, as I was buckled into the back of the bus while in my wheelchair. I cried for everything I’m going through all alone. I know God is in me and with me but I get so upset that He has allowed this to happen. I have a six and ten year old. I am missing being a mom! It hurts to the core of my core. I wanted my mom at my side.
Fortunately, the girl driving the bus was kind. She didn’t notice that I’d been whimpering because of the noise of the bus. It wasn’t until we arrived to the doctor’s office that the driver saw I was crying. She pushed me to suite 108.
The office was spinning. The world spins when I sit upright. The moving bus ride compounded the spinning. I was concerned I may just faint at a red light. This is too taxing on me. I begun wondering if an ambulance would be taking me back to the nursing home so I could lay prostrate.
Have you ever hurt so badly that you wished you could hug yourself? I felt that way, alone in the doctor’s office. The only other time I wanted to hug myself was while Eric divorced me over the telephone. Under no circumstance should I have decided to handle this appointment without having a friend join me for moral support.
I kept calling on the Lord to get me through this day. I spent an hour on the phone with my pastor last night to pray for my appointment. Pastor assured me that the noon prayer group, held M-F, would’ve be lifting me in spirit during my appointment.
I wanted Elanore (my suitemate) with me. I scoot into her room in my wheelchair to hold her hand. Regardless of the upright spins, I can manage a brief visit with my 97 year old pal. We both trust that God put us together for a reason. I lay my head on her bony sternum and she kisses my forehead. She asks me to pray. I gladly oblige. We have a pact to never leave one another for a different nursing home. She tells the staff, “I’m only here because of her (me)!” I received an email from the nurse administrator, thanking me for advocating and looking out for my neighbor, Elanore. One aide mistreated her at 3:30am last month and thought she could get away with yelling at Elanore. The aide didn’t realize I heard her. She was fired thereafter; bullying a 97 yr old woman is SICK. It’s my nature to want to help others. That’s why I graduated in Psychology. I don’t want to be the one in the spotlight, needing help.
The neurologist’s receptionist probably wondered who had died by the time I signed in at the front desk. I didn’t know I had tears left after crying to be with my kids, constantly.
The receptionist handed me a clip board with countless papers to fill out as a new patient. My heart raced. How can I do this? My handwriting resembles a doctor’s cat-scratch. Gone is my once eloquent print.
As I sat and waited to be seen, I cried. I wanted the tears to cease but that wasn’t happening. I rolled into the bathroom for Kleenex. I could’ve used a box of them! I have barely sat upright in over two years because of the vertigo.
This is sinister or I wouldn’t be sobbing. I miss the “Karen” who Eric married. The reason he had to desert me, “You’re not the same.” If this happened to him, he wouldn’t be the same! Would he want to be replaced? Given two days a month to see his children? I’m a shell of that girl with such potential and athleticism because my brain is affected. I’m physically ill and emotionally broken. I cannot help that. Nobody wants to be a prisoner in a body that doesn’t work. Nobody. This is a fate worse than death….alive but unable to live. In 2-3 years of being bedridden, this appointment was my third outing anywhere! I miss my life. Diarrhea 10x daily was better than this. At the time, I didn’t think anything could be worse than diarrhea that wouldn’t stop, some days it was more than 16 trips to the toilet. Eric can vouche.
My neurologist was an older male, older than my 69 year old parents. I prefer being seen by a senior citizen, wise male physician. They don’t make them like those old school doctors. Similarly, children today are in a different world than children of the 1930s. He gave me an hour and a half of his time. His patients wait 2-3 hours to see him because he’s “the best”. Thank Jesus I didn’t have to wait that long. He said, “All I can do is try my best.” I have doubts that any doctor knows everything, especially when it happens to .066 percent or less of the population.
He informed me that “300mg of IV Cortef (equal pill amount for home) is TOO MUCH.” Yes, I agree. That’s what Dr. Glover had me take. After note taking, he conducted a thorough exam, from feet to my head.
In his foreign accent he exclaimed, “You’re a very complicated, complex case. I like complicated cases. It’s a challenge.” As a patient, you don’t want to be complicated. He wondered if I was currently on Hospice. I’m that sick. I’m not on Hospice but I’m to be on Empath Palliative Care, as recommended by Palmetto Health Richland Memorial Hospital (continuous palliative care).”
I have this problem with foreigners, I tend to insert foot into mouth and guess their native country. I don’t know why I feel compelled to see if I can get it correct. I wanted to ask the neurologist if he was from the Ukraine. Fortunately, I went with guessing his continent (Europe), instead of his country. Thank God! He’s Portuguese not Ukrainian. 
The take away from today: I have no reflexes in my ankles, knees or elbows. I have a stiff neck. I need an EEG (patches on head to measure brain waves), Nerve Conduction Velocity Test, more MRIs for his “fresh set of eyes to examine”. He’s increasing my neuropathy medicine and a medicine for vertigo (I think?). The doctor understood my heartache and grief.
The lady bus driver, about my age, came inside the waiting room to help me back into the bus. The tears were still streaming, since hours ago when she’d brought me into the office.
The bus ride home was emotionally painful. The doctor’s practice was in St. Pete, near my first home (Gladden Park) with Eric (2005-2012). As we passed a cemetery which I’d passed numerous times, Zekos Restaurant, Children’s Thrift Store (I had brought Vanessa and Finn to as toddlers), I melted. I recalled the day I brought the kids to that children’s thrift store. I remembered where I’d parked in the parking lot. I gave the kids suckers, appreciating their patience as I shopped. I still have a credit there but it won’t be used.
As we passed the cemetery, I thought that’s where my fate is. I noticed a sign in the middle of an intersection on 49th St N, where someone was struck and killed. Tinsel and a teddy bear decorated the “Drive Safe” median sign. I thought, “How sad!” Then, we passed a funeral home. I felt like pinching myself because if I don’t get better….. I imagine being in the hearse. It’s not a thought that a young mother should entertain because her health is destroyed.
I don’t know how I can make it to the necessary outpatient tests before my follow up neurology appointment in March. My MRIs were scheduled on Feb. 13. That’s the day before Eric proposed to me 14 years ago. Feb.14th is the day we were “official” in college. It’s also when Vanessa and Finn were conceived. We did not plan that. Feb.14th was always one of the happiest days of my life.
My mom just called to check on me. She called my old home phone number, and his “new girl” answered. Not only does it hurt my mom, being her “girl”. My neurologist was disgusted that my partner left me in illness. He shook his head in disbelief.