This morning I vacuumed. Well, sort of. I rolled our heavy yellow Hoover over near the living room window where Carl the Rescue Ficus™ resides during the winter months and sucked up the brown, crusty leaves he’d shed.
Just yesterday, Dan had moved him to the back yard. (That’s where Carl summers.) And the 30-something ficus with the braided trunk customarily dropped his jankiest leaves all across the living room floor in protest. (Carl doesn’t like change.)
The dried up leaves bugged me, so I vacuumed.
But when I say “I vacummed” I don’t mean to imply that I was standing upright and dancing across the living room floor like some ’50s housewife in a floofy skirt and heels. Nope. I was sitting in a rocking chair, wearing the same pajamas I’d had on for three days, stabbing individual ficus leaves with the hose attachment. Because (as most of you already know) I have a brain tumor, am recovering from brain surgery, and am waiting for the side effects of my chemotherapy and radiation treatments to subside.
But wheeling that vacuum across the living room and sucking a couple dozen leaves off the floor would be an accomplishment for me even before I started collecting medical procedures at Barnes-Jewish Hospital in February, and if you bear with me I’ll tell you why.
A few days before I found out about the brain tumor, I had a bit of a breakdown at home. Some pretty significant life changes were headed my way, and I felt incapable. I walked away from my laptop one evening and went full metal drama queen on the bed. Dan came to check on me.
“I can’t do this,” I said to him. “And I don’t mean that like I’m overwhelmed right now and tomorrow I’ll get up like I always do and just figure it out. I’m physically incapable of walking. The pain is too much of a distraction to think. I can’t remember the last time I slept.” I started sobbing.
“Okay, well. What do we do? I mean, we’ll figure something out.” Dan tried to come up with a solution that would calm me. But nothing immediately sprung to mind.
“I’m just done. There is nothing left. I haven’t possessed a proper spoon in months.”
What I didn’t say was that I had this sickening feeling in the pit of my stomach that I was dying. The next day it would be followed by the squeezing sensation I would assume was an “MS hug.”
I would be wrong about that.
As luck would have it, I had an appointment on the calendar to see my primary physician on January 27. I can’t even tell you why I made the appointment in the first place. I’m guessing some kind of follow-up to something or other. It had been on the books long enough that I didn’t even remember scheduling it.
Dan went to the appointment with me. I was emotionally worn down for one thing. For another, I needed him to push me in a transport wheelchair to the exam room. My physical disability was so severe, I couldn’t make it on my own.
That’s the day Dr. S put “gait abnormalities, clonus, and weakness” in my chart before ordering MRIs of my brain and cervical spine.
I guess what I’m trying to say is that this little vacuuming challenge I completed this morning is a BFD. I’m physically capable of doing more things today than I was capable of doing even before brain surgeons and radiation oncologists started slicing and zapping me.
And though there are a lot of things I still can’t do, I don’t feel like I’m dying anymore.
Sunday night was…weird. I went to bed early because I was feeling…weird.
Dan came to check on me. “What’s up. You doing okay?”
“Well, what’s wrong?”
“I don’t know. I just feel really strange. Like something’s squeezing me, but from the inside. Everything’s heavy. I feel like I can’t breathe.”
Dan tried to push me for clarification, but I had nothing. The sensations were new, and I couldn’t determine whether I was having some kind of panic attack or my worst flare up to date.
Am I panicking? Or am I just so weak I my muscles won’t expand enough for a solid breath?
I could tell he wasn’t sure how to help. “I’ve just been lying here trying to decide if this is worthy of an ER visit, but I don’t figure there’s much point in going if I can’t even explain what’s going on, you know?”
Spoonies learn quickly that ER visits are borderline pointless. Unless you can show the doctor a gunshot wound or… Well, it’s pretty easy to talk yourself out of going. They’re expensive as hell, and the doctor you end up with is a total crap shoot.
Like the one who gave me Mylanta and sent me home when I had a gallstone he didn’t bother to check for. That waste of my time cost me thousands of dollars and several more months of excruciating pain.
Ever since my doctor’s appointment on Friday, I’ve been getting weaker and weaker. And it’s not like I had all kinds of strength to start with. In fact, during the strength test part of the visit, she asked me to grab her fingers and squeeze them as hard as I could. I gripped the index and middle fingers of each of her hands and gave it everything I had.
I was thinking to myself, based on my perceived level of exertion, that she was going to say uncle. I pinched up my face and waited for her to tell me to let go.
Instead, she said, “No, as hard as you can.”
When I wake up in the mornings, my spasms are worse. I yawn repeatedly, and with each yawn my entire body tenses up from head to toe. The back of my right ear and earlobe are numb. My forearms and hands are mostly numb, but painfully so.
Whatever that means. How is it possible to be in pain and numb at the same time?
Talking triggers yawns, which triggers more head-to-toe spasms. Getting up from the couch—when I can manage to stand up—triggers head-to-toe spams too. I have to wait for the muscle contractions to stop.
Imagine you’re angry and making a fist. And you’re so angry that your arm and fist shakes in tight, tremor-like contractions until you let go of the fist.
That’s what I’m calling a spasm. Only it’s all over my body. And I can’t just think let go, and my body magically lets go. It’ll let go when it damn well feels like it, and there’s not a blasted thing I can do about it.
There’s no question the reality of my situation is starting to sink in. If you type the visit diagnosis items from Friday’s appointment (weakness, abnormal gait, clonus, restless leg) into my symptom checker app, you get these results:
Knowing what I do about my own body, I’m 99.9% certain I’m dealing with multiple sclerosis. But I can’t completely ignore that other possibility. And I’m already conditioned to fear non-answers. If the MRIs (just got them set up this morning and they are scheduled for Thursday) don’t show MS lesions or anything, what then?
Thank God for medical cannabis in Illinois. Whether Sunday night’s breathing troubles were directly related to my physical condition and spasms or my overactive, anxious mind, one quarter of a gummy helped.
In a few minutes, I felt the muscles around my chest and stomach let go. I could breathe. And then I feel asleep.
Dan and I were leaving the clinic after my doctor’s appointment Friday. I was hobbling with my left arm hooked around his elbow and my right hand gripping my cane. I was so exhausted, I wanted to stop and take a nap halfway to the car. The only thing that kept me going was my desire to get out of the razor-sharp wind.
“Did you hear her?” I asked. “She said ‘this is not fibro.’ I kept it together in there but I wanted to cry.”
The past week has been dreadful for me. I’d-rather-do-aeorbics-in-a-pool-of-peanut-butter level dreadful. I’d spent so much time not doing anything in order to save a few spoons, that I didn’t realize I couldn’t do anything, even if I wanted to.
Dan had to bring me clothes, help me rinse the shampoo out of my hair before my appointment, and search the house for my comb. (The comb was in the dining room, where it had been since we unpacked after holiday travels in December. It’s always wash and air dry for me.)
After every chore, I’d have to stop a few minutes and rest.
Wrap a towel around my head. Sit on the toilet with my eyes closed. Brush my teeth. Sit on my bed. Get dressed. Sit on the couch and try breathing a little deeper. Put my shoes on.
By the time we were on the interstate, I was dizzy and willing away a panic attack. (For the record, most times the mental anxiety doesn’t come until after my body starts freaking out.)
“Your pulse is 120.”
“That seems high, doesn’t it?” Dan and the CNA both agreed with me. I was sitting upright, but had just walked down the hallway seconds earlier. (I’ve been saying for months that my autonomic processes are screwy. I was appropriately concerned, but not surprised.)
Next, she put the cuff around my arm and in a few seconds announced that my blood pressure was 174 over 110.
I gasped. “Ohmygod. That is really freaking high—the highest I’ve ever had—but I guess it explains why I am so dizzy.” I was also seeing floaters, but I didn’t bring it up. I was focused on willing myself not to pass out.
“Yeah, it’s pretty high,” she agreed. “Earlier this month it was better, though.” She pointed to my records on the monitor, referring to the day Dan pushed me in the wheelchair to my sleep consult. “I’m going to come back in 15 minutes and take it again, okay?”
When she came back, it was down to 132/90, and I was feeling more stable.
The doctor eventually came in, and the three of us discussed the issues that had been of most concern to me recently: the inability to move my leg, my worsening weakness, how I walked like I had mad cow disease, and my inability to stand up on my own—at first after a bath, but now also after showering with a shower chair.
“What about getting up off the floor?” she asked.
I looked at the sterile floor of the exam room. “There’s no flippin’ way,” I said. Please don’t make me prove it. The thought of trying to get myself up off the floor…
She took my word for it, but asked if she could watch me walk. The three of us went into the hallway, and I began my slow hobble down the hallway with my cane in hand.
“Are you going to fall?” she asked?
“I think I’m OK for now with the cane.” I wasn’t really confident, but I needed her to get a decent picture of what was going on with me.
As I made my way back to them, my leg muscles were utterly exhausted after only about 20 steps. I asked her about ruling out MS.
Next, Dr. S asked me if I’d sit on the exam table. I shakily climbed the single step and tried to lift my butt up with my core muscles while my palms were planted on the cushioned part of the table. It was a struggle of epic proportions.
When I was finally seated, knees bent and legs hanging over the edge, she started a physical examination that included testing the strength of different muscle groups by having me push and pull against her.
Next, she started hammering reflexes. When she tapped my left knee, my leg swung wildly out and then back in. My heel slammed against the metal base of the exam table. It was loud and echo-y and sounded like I’d just lost the game of the year and was kicking lockers in a self-loathing rage.
The three of us had a good chuckle, and she said not to worry or try to minimize any of my reflexes. She finished up with her little hammer.
Then the weirdest thing happened. She grabbed my left foot, moved it up and down quickly a couple of times, and then held it in a flexed position. My foot went spastic, pulsing in the same repetitive motion for several seconds until she let go. It happened with my right foot too, though not as pronounced.
I’ve been reading up on MS and watching YouTube videos for weeks, so when it happened I already knew it had a name. I didn’t know, however, that I had this sign. It felt really weird, voluntary muscles acting involuntarily.
She said I could step down. “This stuff can’t be fibromyalgia,” Dan said.
The doctor agreed. “The muscle weakness, clonus, gait abnormailities, and the inability to move your leg that you reported last month—this isn’t fibro.”
You guys, joy washed over me in a wave from my head to my toes when she said that. Then she added, “If you talk to others with MS, you’ll probably hear a similar story. They’ll tell you that for ten years they dealt with inexplicable symptoms while doctors looked at them like they were crazy.”
I nodded my head in agreement. 2005. The vision loss. The pregnancy test. Doctor I-Don’t-Think-It’s-a-Stroke.
She ordered MRIs of my brain and cervical spine, and recommended that I keep any appointments I have. She believes the sleep study will still be helpful. Plus I now have two neurologist appointments on the books, one with INI in Peoria and one with someone local.
“They’re far enough out you can cancel if one or the other isn’t needed, but you don’t want to be waiting to get back on the books.”
I’m convinced it’s MS, though there are some other possibilities. However, getting that diagnosis could still be a long, tough road. I’m trying to prepare myself for inconclusive MRIs, just in case. I am the queen of negative test results.
If you’re interested, here’s a quick explanation of how MS is diagnosed and what a challenge it can be.
Last night I had all the anxiety. All of it.
Will I have to go to the ER before I get my appointment at the MS Center? How will they get my records before I’m an actual patient? Will they arrive and get lost because no one knows who I am or why they’re being sent?
Who are you kidding, self? No one is even working on your records.
Should I keep my sleep consult appointment on Wednesday? I already have to lean on the counter just to brush my teeth. I don’t want to walk from the parking garage to the doctor’s office. I’m not sure I can do it, whether I want to or not.
I feel like I can’t breathe.
What if it is MS?
What if it’s not MS?
What if I don’t ever get better?
Last night Dan was working on a little project for me: removing, washing, drying, and replacing the covers we keep on our living room furniture to protect the upholstery from Boomer and Izzy.
Putting them back on required moving the couch and love seat. At one point he bumped the lamp on the sofa table, knocking it to the floor. The shade came off, the bulb broke. And then… the broken light bulb started smoking.
“I need you to unplug the lamp!” Dan said.
“OK!” I was sitting right next to the power strip where it was plugged in, but I couldn’t reach it. I made efforts to get out of my seat. I grunted. I rocked myself forward trying to use momentum to get me off the couch, knowing that once I was upright, I’d still have to turn 90 degrees and recover my balance. Then I’d have to bend over and, using my weak arms, try to pull the lamp cord out of the outlet.
“Fuck. Nevermind, I’ll get it.”
I had only managed to scoot myself closer to the edge of my seat. I wasn’t anywhere close to standing when Dan realized it would be faster for him to get up off the floor and walk over to the outlet.
Crisis averted. Nothing caught on fire. But I was smacked by the depressing reality that I can’t do anything and I certainly can’t do anything quickly.
I’m officially sick and a burden.
My parents have a garden tub, so while we were visiting them at Christmas I decided I was going to take full advantage. Traveling can be so stressful. That’s one of the reasons we stopped at Walgreen’s the day before leaving Urbana; I wanted to pick up a bag of Dr. Teal’s Epsom salts to soothe my achy muscles.
I was in the tub for about 15 minutes when I was overcome with fatigue. The bath had worked to soothe the muscles in my legs a little too well. And by that I mean I couldn’t get myself out of the tub.
I drained the water completely and tried to stand, but I couldn’t even get my feet planted under me, let alone stand on them. Next I tried the grab bar. Maybe a combination of standing and pulling with my arms would do the trick.
And being stuck in the bathtub was getting me all panicky, which would only undo the relaxation I was trying to achieve. I grabbed my cell phone and texted Dan, who was reading in the living room.
That wasn’t the first time I’d tried to take a bath and been unable to get out of the damn thing myself. A couple of months earlier, it had happened at home.
We have a terrible old bathroom with no grab bars and shower doors that are decent enough to keep me steady, but no way is there any chance in hell they’d hold up to me trying to pull myself up with them.
Dan tried a couple of different methods. “Here, grab my hands and I’ll pull.”
“That’s not going to work.” I started tearing up and my chin quivered and got pocked with pout dimples. I tried to take deep breaths to ward of panic and hyperventilation, but I was so drained and fatigued I couldn’t even suck in a big breath. I was hunched over, without even the strength to straighten my spine.
“There’s a way to do this,” I said, “I just need to think how we can get me out of here without breaking me or you, or tearing out the shower doors.”
After a few minutes, I had it. Dan stood behind me in the tub, hooked his arms under my pits, and lifted. Once my legs were under me, I could stand on them. (Though my knees had to be locked in hyperextension to keep me from crumpling.)
Before I got in the bath at Mom and Dad’s, I told Dan, “Keep your phone handy. I might need a rescue crane.”
I already knew that people who have multiple sclerosis (MS) need to avoid the heat. So—you guessed it—I went Googling. Back in the day, doctors would actually use a hot bath test to diagnose MS! Holy shit!
“In the 19th and early 20th centuries, the effects of heat on people with MS were used in the diagnosis of the condition. The hot bath test involved lying in a bath of warm water. If this caused or worsened neurological symptoms, it was taken as evidence that the person had multiple sclerosis.”
Most of what I’ve read says that the heat from the bath causes a temporary worsening of symptoms, but someone in a forum mentioned the debilitating effects could become permanent. Um, even if it’s a gross exaggeration of the facts, no more baths for me.
This heat intolerance thing may also explain why I can just barely function after a shower and have to lie down on my bed for at least 30 minutes