Around the first of every month, for the past 16 months, I find myself reliving THAT day- the beginning of my MS story. The story that I am still creating and that already has so many chapters. The story that I still sometimes wake up and my first thought is, “But I thought it was just a pinched nerve from that kettlebell workout.”
September 1, 2018
Woke up in a Nashville hotel to later celebrate the marriage nuptials of my cousin. Thought it was weird that I couldn’t get my left arm to “wake up” – Was it a pinched nerve from working out? Was it the terrible traffic-y 6 hour car ride to Nashville the night before? Did I sleep on it wrong in the hotel bed? Meanwhile, I’m waiting for my kids (teens) to wake up to meet my dad downstairs for breakfast- my husband was also out of town at his cousin’s wedding( Labor Day Weekend is a popular time to get married!)..
I got on my yoga mat( I bring it EVERYWHERE) to practice some yoga to see if that will help. First sun salutation, I fall flat down on my face because my arm will not support me. Try it again. Same thing.
I finally rest on my mat and really pay attention to what is happening. I notice it’s like pins and needles all up and down my left arm. And that I can’t really make a fist with my left hand. And I am left handed. Must be a pinched nerve.
Take a hot shower- become extremely weak- like nothing I have ever felt before weak. I look back now and laugh because, as most MSers know, hot showers/baths exacerbate MS symptoms. Never a good idea in the middle of an attack.
Finally get dressed after resting from just taking a shower- Y’all- anyone who knows me knows I am high energy. What is happening? I’m pissed at this point because we are ready to explore Nashville before the Wedding.
I have to get my kids to open stuff for me- I really didn’t even say much other than that I might have a pinched nerve or something, no big deal.
Every chance I could get that day, I sat down. I rested AGAIN before getting ready for the wedding.
Attended the wedding and enjoyed spending time with our family- however, this was also a very emotional time for our family because one of my cousins was not there with us. She had just been diagnosed with a very SCARY medical issue and was recovering from a craniotomy. Yeah. So lots of tears. And fear.
I went to bed ( finally) and just hoped all would be well the next morning. The joke was on me.
It took all I could do to get out of bed, dress myself and get in the car. My daughter drove us the whole way home. All I wanted to do was take a relaxing hot (haha) bath in my lovely bathtub at home. Which I finally did later that evening once we made it home sweet home. I was so confused as I lie there in that bathtub. Why was only one side of the water working?! What was wrong with the water faucet that was making only the left side come out hot?! Why was my entire right side wet but not heating up? I’m embarrassed to admit that it took me quite some time to realize that it was not the water that was not working correctly- it was ME. I tested the dripping water with my left foot-HOT, then I tested it with my right foot- wet but… nothing- zero temperature sensation AT ALL. I sat in that water and really paid attention. My entire right side of my body could not feel any temperature sensation. My left arm and hand were so weak and tingly. I guess a pinched nerve can do this?
I somehow manage to crawl out of the bath and into pajamas. Go to sleep. You may wonder- is she scared? Is she thinking of calling a Dr or going to one at this point. Nope not really- insert my typical under- reaction to my own health issues here. All I was focused on at this point was sleeping in my own bed- the next day was Labor Day AND my son’s 15th birthday- he wanted me to make buffalo chicken dip. And my daughter and I were meeting a kind old friend who was in town at Starbucks around 9 am so that she could use her college professor-y skills and guidance to help with O’s 10,000 college essays and resume. Meanwhile, my husband had driven straight through the night to find me sitting up in bed early that Labor Day morning. He took one look at me and said, “Something’s not right with you” ( I had not even mentioned to him what was going on yet). I told him everything that my body was doing and he suggested we go to MD 360.
Did we go right away? Nope. I told him O was driving us to Starbucks and then we were going to the grocery store to get the ingredients for J’s birthday request- plus all the other food we needed. We meet for coffee and catch up – O has to deal with paying and carrying everything for me. Sweet and Smart friend was like, “ You might want to go see a Doctor.” Yep- after the grocery store maybe. While we were at Publix, my legs start becoming numb and weak. It FINALLY hits me that maybe something could be wrong. O tells me she thinks we should stop shopping and just go home. She pays and loads the car with the few groceries we bought ( it really bothered me to leave without getting all the stuff ON THE LIST!).
Get home around lunch time and Smart Hubby insists it’s time to go to MD 360 ( local emergency care). Still haven’t even seen the birthday boy that day because he was still asleep- teens….
The doctor pretty much immediately says, “ Are we calling an ambulance or is your husband taking you straight to the ER?” She thought I’d had a stroke or damaged discs in my neck so she put the cervical collar around me – I still have nightmares about that damn thing- I’m so angry because I think this is overkill and ridiculous. We get to the ER and the neurologist starts doing all of these tests and asking me over and over every 10 minutes to move my arm in different ways. I am crying with frustration at this point because I absolutely cannot make my arm work. I kept apologizing like I was doing something wrong. Like I wasn’t passing the tests! I am an achiever- I DO things- I am in control- how could I not make my arm move or squeeze anything? And I was still wearing that fucking cervical collar. So much blood was drawn- so much blood.
I just keep saying- isn’t this just a pinched nerve? The hospital neurologist says he thinks I have had a stroke and I am arguing with him that I would know if I had a stroke. He gently smiled and said something like he was glad that I thought I was a stroke specialist- but in a nice way. So off we go to have a brain and cervical spine MRI and I had a tantrum about having to leave the stupid collar on so they let me take it off for the 1 hour MRIs. When I was done, the tech said I didn’t have to wear the collar anymore- I kind of realized then that maybe it’s not a pinched nerve- but I was also starving and delirious and couldn’t think straight at all. Dear hubby meets me outside of MRI room as they are wheeling me straight to have a Head CT. At least my collar was off- YAY!
Meanwhile- in between all the waiting, the kids are calling asking when are we going to be home to make the Buffalo Chicken Dip and O is working on college essays and we are discussing them and she needs the credit card info for application fees. I do not have time to be in this ER!
Around 11:00 pm, a different- very young- looking (maybe about 14) neurologist comes in and she sits real close to me and holds my hand and says that they have discovered why I can’t move my arm. She said the MRI showed lesions on my spinal cord – right at the brain stem- and that where they are located are inoperable and cannot be biopsied. A million things are going through my mind at the same time:
I was right! I did not have a stroke!
It’s J’s Birthday….
I haven’t made all the lunches for the week yet and the kids have school tomorrow.
So what is wrong then?! What can be done to fix this? Can I go home now??
I’m verbalizing all of this but it’s not coming out right – my left arm is going crazy ( learned it was “clonus”) because I was having panicked breathing. The teenage Dr tells me to slow my breathing ( YAY for my yoga practice) and my arm finally stops slapping me in the face. My husband and I are in shock. AND that youngster Dr said I needed to understand the seriousness of taking care of myself and not worrying about the kids ( she is not a mom yet) and that I was being admitted into the hospital for further tests. So insert the Absolute Fuckening.
I stayed awake all night in the ER waiting for a bed- still not allowed to eat or drink water – just ice. Blood drawn every couple of hours- they were doing an MS work up but the original neurologist said I did not present as a “typical “ case of MS because of my advanced age and lack of brain lesions. Got into my room on the neuro floor about 6:30 am. Awesome and Amazing nurse comes in at 7:00 am- she says the Dr will be in soon to do a lumbar puncture to see what’s in my cerebrospinal fluid- I just keep asking her when can I go home and am talking a mile a minute and am dying of thirst- she says: I can tell you are a Mama- I am too- this is going to be a long road- this is very serious and I cannot tell you when you are going home but I can tell you that I know you have grit and you are going to need it- and I’m putting Ativan in your IV. Lumber puncture ( spinal tap) is so pleasurable and fun- NOT. But I have had 2 epidurals so I know the deal. They start me on tons and tons of IV Steroids- still without an official diagnosis because LP results had to be sent to the Mayo Clinic. I FINALLY get to go home on 9/5 with home health coming and having IV steroids at home. This is where it all becomes blurry and my memory isn’t totally there- can we say PTSD symptoms?
I do know that during the in between time, the not knowing time, the imagination running wild time, the time of in home OTs and PTs and nurses time( which lasted until the end of October), our family was inundated with more love and support and help and food and kindness upon kindness for which my gratitude has no bounds. And which still makes the tears flow just thinking about all of that love consistently pouring into our home.
The official call from the outpatient neurologist’s office came on 9/12/18. I was not allowed to drive ( obviously) – I had no use of my left arm and had to use a cane to walk-so my dad ( my official Uber driver) came to get me while my husband drove to the Dr’s office from work. More on the steadfast strength of my husband as that is a chapter in and of itself.
“So you have Multiple Sclerosis- it is very clear and all tests confirm. You will need to start very aggressive infusion disease modifying treatment as soon as possible because of where your lesions are- no room for them to grow- you could have been a paraplegic with this attack.” His bedside manner was severely lacking. And he is no longer my neurologist. For many different reasons.
I have no further memory of that day.
And this is the very first time I have written about it. I have told the story more times than can be counted. Writing it feels very different.
I choose to refer to my MS as Multiple Surprises – hence the name of this blog. And that is a story for another time- because I am practicing excellent self-care and know when it’s time to get ready for bed and to allow all of the emotions flooding me right now to be felt and processed and respected.
So may we all give ourselves permission to tell our own stories in our own way and on our own time.
And may we send all the compassion and understanding to all the humans struggling with whatever it is that their stories will contain.