(Note-This is not an exact timeline, but a rough recall of events.)
Last October I was admitted into the hospital. I had been having strange symptoms for which there was no answer. I’ll explain what happened first then give an update.
I had numbness in my legs and all of the sudden walking up the stairs made it feel as though I had sandbags on my legs. My brain told me to chalk it up to being fatigued but deep down I was nervous. The numbness and tingling was spreading and had made it to my arms and legs. I felt “heavy”.
After talking to a couple of wonderful friends I met in nursing school and explaining my symptoms, they both immediately brought up Guillain-Barre syndrome. I had the symptoms but needed to be diagnosed. Out of an abundance of caution, I headed to see my primary care doctor who shortly after examining me and evaluating my symptoms, instructed me to go to the ER, which we did.
MRI, check. CT, check. Blood work, check. All normal but nothing pointing to answers. I’m released still not knowing what is wrong with me. I called my doc back and she insisted i go to the other hospital here and ask for a lumbar puncture, the only way to formally diagnose this. Once there, I was seen promptly and they informed me that I would begetting this procedure. It’s not a walk in the park and I hope I never have to have one ever again.
The results came back positive. A year ago this month, I was diagnosed with Guillain-Barre (GBS). Life as we knew it would drastically change.
GBS is autoimmune, My immune system is attacking my peripheral nervous system. There isn’t a lot known about it’s cause but we do know that certain vaccines and infection can cause it. Mine was likely caused by a gut infection I didn’t know I had until after a surgery.
My immune system is not strong enough to get my usual flu and covid shots, or the shingles shot since turning 50. GBS usually reverses itself but you don’t know what deficits you’re left with for some time. Hope is always alive as we patiently wait for a verdict. Time is a bitch.
Without going into the nitty gritty, the past year has involved a total of nearly 6 months inpatient between the hospital, a skilled nursing facility. I was paralyzed from the waist down, was on multiple meds for pain that barely touched it, and worked through grueling therapy to get where I am now. I’m still in a wheelchair but can move my legs, am off the heavy duty pain meds. I am on a medication for severe nerve pain. My hands feel like sandpaper and numbness still plagues my extremities, but every week I get a little more feeling back. This has been a hellish experience but therapy is helping me cope.
I’ve not lost sight on how far I’ve come.In many cases you can end up on a ventilator. Fortunately, I escaped that nightmare. I’ve now been home longer than inpatient. There are things I can do myself like comb my hair, get dressed, and do some make up. It’s normalcy that I crave the most and strive for. Getting to see family and friends, being able to transfer from a wheelchair to the car is physical and mental freedom.
I start back up with therapy in January ( I maxed out my visits with insurance, another blog post) and continue with my exercise regimen at home. My drive to walk is impenetrable and I am willing to do whatever it takes to reach that milestone. My physical therapist is incredible and has helped propel me forward, albeit slowly. Progress is progress.
Gratitude is forever etched into my heart. Friends that have helped with meals, financial contributions, and visits (I LOVE visits). often brought me to tears. Family has been so supportive an helped beyond measure. I hate to use colloquialisms. Reeeeally hate to, but-the phrase, “It takes a village”, is not lost on me.
Most importantly in the gratitude department, my hubby. His care is tireless. His support unending. Working full time, caring for me, our two cats, keeping up on housework, and cooking our meals-he’s an incredibly amazing human with a sturdy heart of gold.
Lastly, I jumped back into school, determined to finish my last three classes before I transfer to Oregon State University to complete a degree in Public Health. It’s an online program which will work well given my situation. Career options are key since I’m now more susceptible to getting a flare of this again and being able to work remotely or even in a wheelchair is big. I will still work as an end of life doula but not until I’m walking since accessibility will be a challenge.
A lot to ingest. That’s how life feels but we are trucking along one day at a time.