Tag Archives: therapy

Ch-Ch-Ch Changes

(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.

The Final Countdown

Although I used to love listening to Casey Kasem’s weekly top 40 countdowns, this isn’t about the song topping the charts. This is about nursing school! In 97 days, 14 hours, and 20 ish minutes, my “adventure” begins. I use that term lightly knowing it will likely be full of tears, sweating anxiety, and mass quantities of coffee. But I digress.

The past nine months, therapy has been my focus. I no longer get dizzy when walking and can walk in a straight line without veering off to one side. At times during PT, if I close my eyes, I still can’t find my center so we’re working on that. Speech therapy has helped improve my word recall and memory, though I still have work ahead of me to continue to progress. Measured progress can be seen years out from a brain injury, so we continue to push forward. Pat asks me questions such as naming five fruits or five things that play music, for example- while I am completing another task. My executive functions are what we’re focusing on; multitasking, prioritizing but also coping with overstimulation. I still have some brain “glitches” where words stumble out of my mouth and get mushed up, but my brain is a work in progress and trying to sort this all out.

In other news, I got the go-ahead to start driving. It’s been around a year since I last drove, and to be honest a total pain in the ass. I am grateful to Pat and all my friends that have helped get me to my numerous appointments this whole time. It’s the piece of independence I’ve been craving so badly.

This term I’m taking one of my last two math classes (can you feel the excitement?!). I hate math. Hate is a strong word I usually reserve for spiders and a certain other orange someone. Math has been a challenge but somehow, I’ve almost made it to the finish for that line of classes. Next summer I’ll take statistics and be completely done. Taking a class now is a good way to dip my toes back into the shallow end of the pool before I’m thrown into the abyss in the fall.

With that said, if I could draw a party with Jason Sudeikis doing the running man over in the corner, D-Nice spinning tunes, and a disco ball in my head-that would still not capture how excited I am to start nursing school. I’ll need some accommodations but I’m fine with that. Whatever gets me there.

With regard to my heart and the event (whatever it was) that was last month, I’m seeing a wonderful cardiologist that is setting me up for tests to help determine what may have happened. They attempted to do a cardiac scan (calcium scoring test) last week but my heart rate was too fast for it. Since I’m already on a beta blocker, they are trying to determine how to proceed. The plan is, if my calcium score is high, we’ll proceed to an angiogram. If not, we’ll go from there. Stay tuned. I’m trying to learn as much as I can while doing all of this. Can’t take the student out of the patient.

Lots of changes but it has given me hope. I’d be lying if I said it was all sunshine and rainbows. I’ve had some pretty dark moments this past year. Some days it’s an album of Adel but more often than not now it’s a round of Dr. Feelgood.

3 Ply Toilet Paper- It’s a Thing

Well hello! It’s been a while, I know. This may be a bit lengthy, so hang in there with me?

The occupational therapist I was seeing at a different facility than all my other therapy/ neuro needs are handled, was not a good match for me. I felt like I was dealing with the school secretary in Ferris Buellers Day Off.

Upon entering the waiting room, it’s a TBI patient’s nightmare. Florescent lighting everywhere, it’s loud and there’s nowhere to self-isolate, seating is cramped, it’s dingy and one of the most overstimulating environments I could put myself into, save for the grocery store at 5PM on a Friday night. As soon as I’d walk through the door, I felt my anxiety level shoot through the roof. The staff was completely unengaging, indifferent. Most importantly, it just did not feel like a place of healing.

The worst part though, was the therapist herself. She was nice but did not get what I was dealing with. She didn’t know how to connect with me or engage me, which for me, is crucial to my success. She said even when I have headaches, I need to work through it to try and complete some of the activities she gave me. This even after I explained that they can quickly escalate to migraines. If it was just a matter of a poor match with the therapist, I’d have said something and either chose someone else or discussed my concerns with her (I’m not shy). But the combination of that and the horrid environment were enough. Who you choose to get you through a traumatic, life changing event like this matters. It MATTERS. Why? Glad you asked.

In our second to last appointment, I again asked about school in the fall. I needed to plan, to give the school an answer, etc. I wanted to know what I was looking at down the road. I made it very clear school was my biggest motivator. She told me that “perhaps I should also consider thinking about other things that bring me the type of joy nursing does” in case that is not possible. I was crushed. This was three appointments in. I left in tears, heartbroken and feeling really lost for several weeks. It impacted my mental health and my ability to see past where I was at.  I’ll come back to this.

The physical therapist I’m seeing gets it. He knows what motivates me, how far to push me, keeps it fun but on point. It’s a fine balance and not every healthcare professional possess it. It doesn’t mean they are bad at what they do, but for rehabilitation it makes a big difference in how you feel about your appointments and progress. The new speech therapist is no different. I look forward to her appointments and they fly by quickly. It’s a joint effort. She understands what is important to me but keeps things honest and helps me set realistic expectations.

At the end of my appointment with the speech therapist I told her about my previous discussion with the one I had left and asked for her input. She asked me if I had had consistent, frequent speech/ occupational therapy over the course of weeks. I said no. My first one left the facility and the second- was not a good match for the reasons mentioned above. She said it would be unprofessional at this point to make any kind of judgement about that (good or bad) without seeing results after about 10 weeks of consistent therapy work. It was not impossible, but she needs to see what kind of progress I make, how my brain adapts etc. While it doesn’t change the outcome, it certainly makes more sense to me. How would the other person have known two appointments in that things might be so grim? She was also compassionate. She gets how important my goals are to me and how much we’ve sacrificed for me to get where I am. I don’t give up easily. She asked what I like to do, my interests etc. My activities incorporate these things which makes it easier to do at home between appointments.

So over the next several weeks into mid-May, I’ll have therapy (speech/ physical) a total of four times a week. At some point, occupational therapy will be added in. I’m doing activities at home, even asking family to help me with my brain exercises to keep it interesting. I want to get as far as I can by then to see what kind of progress I can make and what it means moving forward.

My balance is improving. I still veer a little left when I’m walking and look left and my depth perception is not the best so driving is still a no go for everyone’s safety. No one needs Large Marge at the wheel. I’m working on coordination and other physical activities to help my affected left side.

My thought process is slow. Word recall can be really challenging. Following recipes is difficult. I misread instructions and often have to read steps multiple times. It’s a good exercise though. My short-term memory is VERY rusty so at times I’ll forget my phone number or date of birth for hot minute. It certainly warrants some strange looks at my appointments or at the store.

Being overstimulated is one of my biggest challenges. Put me at a store with lots of people, noises, chatter, announcements, music, etc and I last about two minutes. Multiple conversations at once, talk on the radio while someone else is talking to me- puts me on edge (sometimes over that edge) quickly. My speech therapist is helping me work through those things. I’m reading a book called Trauma-Sensitive Mindfulness. Every time I get a migraine, fear creeps up that it might be another stroke. Nausea can have the same effect. I wait and nothing happens but the fear is there. I’ll report back on the book when I finish but so far it’s been very insightful. Incorporating this with some meditation to help my brain tune out what should be background noise may help. Right now, everything fights to be heard at once. I can’t shove it to the side. My brain doesn’t know how to do that. It’s like being in a crowded room trying to hear everyone at once. I want to sit on the floor, cover my ears, close my eyes and escape. I can’t.

Last night my family and I all met virtually online. We talked about toilet paper and the current shortages everywhere. As you can imagine, poop jokes and humor ensued. It’s what we’ve all done best at our lowest moments- still maintain sanity through humor. My brother mentioned 3 ply toilet paper to which we all questioned what that meant. Does that mean there’s a four ply? Do you only use one square at a time? Is this rationing friendly? He used the term “executive toilet paper”. I won’t go into some of the other jokes that came out of that.

Social distancing has not helped but is necessary. I’m so thankful that Pat (my husband) keeps me laughing, even in the dark moments when he catches my tears of uncertainty.  Having a Portal for our TV (Facebook device), FaceTime, and social media have helped me stay connected with family and friends. I’m grateful. They’ve listened to me vent all of this and offered unconditional support every time. It’s been a wild ride, and often a painful one. I would not wish it on anyone. But having the right medical team helping me navigate the maze of uncertainty helps me maintain my hope and my drive to keep moving forward. I can still see nursing off in the distance, I just want to get a little closer. It’s killing me to have a medical license and not be able to help on the front lines. I work well under pressure and want to help. I realize the only way I’ll get there is to focus on rehabbing my brain.

Today I received my confirmation of my placement in the nursing program for this coming fall. I’m holding on tight to that.