A lot of you have been following my Facebook site, so some of this may be old news to you. I have had a week and a half of highs and lows.
On Thursday, I had my rheumatology appointment. I always dread this appointment, because the doctor has such a “poker face.” He always seems so negative, because I can’t read him. I have even told him this on occasion (which, ironically, makes him smile). He is also the realist to my neurologist’s optimism. He is in charge of what happens with my chemo and my medication, though he has to run it by my neurologist, and they have to agree on treatment. Ultimately, however, he decides what happens to me. So, I dread going. Every. Time. He always either extends my chemo or ups my Prednisone, and he gives me zero hope for my future.
BUT, this week was different!! I had gone through another diagnostic lumbar puncture, which I wrote about in one of my previous posts. The doctor actually SMILED as he gave me the results!! The inflammation in my brain had gone down, my white blood cells (infection) were almost non-existent, and my CNS glucose levels were normal. For those not understanding … this is GREAT news!!
My chemo, which was either going to be six or twelve months, depending on results, is only going to be SIX months!! That means I have only ONE MORE TREATMENT!! The BEST news is they are going to taper my Prednisone!! Hopefully this means I will feel better, and more importantly, the weight will start to come off!
The doctor was actually half smiling as he assessed me. He said, as long as I work hard on my PT exercises and OT treatments, my stroke symptoms should improve exponentially. He is not sure I’ll be 100%, but he is confident my walking, writing, and basic life will improve!! Y’all … I left there smiling for the first time ever!!
The next day, I had to go back to Duke for OT. I was dreading this appointment, because it is so dang far of a drive. It’s two hours each way (by the time you add in parking, walking in/out, and checking in/out), and all I ever do is get frustrated when my hands don’t work correctly. THIS WEEK, however, we worked on a driving simulation. WHAT?!? I didn’t even think this was an option for me, since I have trouble walking. The good news … I HAVE BEEN CLEARED FOR SHORT-DISTANCE, SUPERVISED, DAYTIME DRIVING!! This may seem stupid and insignificant to some, but I have been bound to this house for six months! This is a HUGE deal!! This is the first step to freedom.
I was on such a high on Friday as I left! Two days of fabulous news for the first time! Finally, things were looking up!!
Then came Friday night.
For those that don’t know, I went back to nursing school three years ago when I couldn’t find a job in my major. It was one of the hardest things I have ever accomplished. I passed boards on the first try, which was a miracle. I worked a year as a floor nurse, before getting a job in the OR. I worked HARD at this job. I liked it, and thought I had found my niche in the nursing field. I was in this position almost a year, when I experienced vertigo really severely one night at work. Thus was the beginning of this mess I’m in now.
Work was very good to me. They paid my personal bills one month to help me out, some of the employees sent me gift cards for gas and food, and they took it upon themselves to put me on FMLA. This was to ensure I had a job when I was ready to come back. All of this was so appreciated, and I was forever grateful to them.
HOWEVER, Friday night I tried to log in to my work email. I could read what was already there, but it wouldn’t let me download any attachments or get new mail. I was so confused. I tried for over an hour to open the PDF attachment I needed. No luck. I called the IT help desk. They just told me it was probably a glitch, and to call back Monday. Something didn’t sit right with me after this call.
I texted my boss.
She was very vague at first. “How are you doing?” “Is therapy working?” “We are all thinking about you.”
It wasn’t until I asked about why I was having trouble downloading work emails that I was hit with the blow. I was informed that as of January 1, I had been “separated from the company due to an inability to perform the job at expected levels.” I never received any correspondence from them up until this point, even though she filed the paperwork for it the week before.
She assured me this meant I wasn’t fired, just released from my duties. She told me I was an excellent nurse, and I should reapply if I got well. – It didn’t matter – There were tears galore. I was so sad. This was yet another thing this awful illness (disease?) had stolen from me.
I wallowed for about an hour. It felt like all hope was gone.
Then I remembered. I have faith. I believe everything happens for a reason. Maybe this is the new start I needed. Although one chapter in my life that I had worked so hard for was closing, maybe this was God’s way of saying there is something better for me out there.
I don’t know why I was supposed to go through two hard years of nursing school, but I know I was. I don’t know why I had to work at a job I hated, on a hospital floor, as a green nurse, but I know I was supposed to. I don’t know why I had to go through the arduous interview and training process for the OR, but I know I was supposed to. I don’t know why I had five strokes at 41 years old, but I know it was destined to happen that way.
Maybe I’m supposed to help others through the recovery process. Maybe I’m just meant to encourage those that need it. Maybe there are better things on my horizon.
All I know is that I have a strange peace about all this. It will be okay. I will be fine. I have a family that loves me, great friends I have met through this process, great best friends who have been there for me through it all, and people that have come out of the woodwork to show me love and support.
Life is good, regardless of the Highs and Lows.