POP! goes the…

In my last post, I wrote about how busy April was. But I left out one of the biggest things. Last month I contacted the Hanger Clinic in Gig Harbor and asked if I could come for a couple days of additional training in June. I’ve been feeling so much stronger and have been so consistent with my practice that I feel like I can really get more out of training with an ExoSym expert now. I was excited to nail down the dates, plan an excursion to Olympic National Forest (because I hike now), and visit family in Oregon and Washington. My husband and I looked at a map and a calendar, made various reservations, and planned a two-week road trip. Yes–a trip! With travel! Outside the house! To a place where it rains!

So stoked. So excited to visit the Pacific Northwest again, and get more ExoSym training, and be in the trees, and eat food that we didn’t make. To relax and kick off the summer.

May started off well. I continued my daily stretching and strengthening and ExoSym practice. I went to a myofascial release appointment and to a physical therapy appointment. When I arrived at PT on the 5th, I heard the voice of my long-absent therapist, C, whom I hadn’t seen since November because she was recovering from surgery. This was my final appointment with my sub. He did the stretches that I can’t do alone and I showed off how much better I’ve gotten at the side leg lifts, just in the two weeks since he’d seen me last. He sent me off with excitement and encouragement, assuring me he’d talk to my original therapist–fill her in on our change in tactics and on my progress–before I transitioned back to her at my next appointment.

Saturday, May 8th was a good day. We ran a couple errands and then spent the rest of the day reading on the couch. What a relief–a quiet Saturday, just as it’s supposed to be. I moved off the couch and onto the rug for a change of position. I read for 10-15 minutes with my e-reader on the floor in front of me, leaning over my folded legs, kind of like child’s pose. But I probably changed position often because I can’t last on the floor very long in any one way.

When it was time to get up, I moved from side sitting to up on all fours. POP! I felt and heard something in my right groin. And it hurt. When the pain lingered and it was difficult (more difficult than usual) to get up off the floor, I thought, oh, I actually hurt myself. It stayed the rest of that day. I used a cold pack and rested and tried not to worry.

Sunday, when I woke up and got out of bed, I immediately realized that, not only was the pain still there, it was worse. I knew that I would be breaking my ExoSym streak that day, after 52 consecutive days of practice. I knew that I would break it eventually, and that it was okay if I did, so again I rested and tried not to worry.

When Monday came with no change, I made a doctor’s appointment for 8am on Thursday, May 13th. I figured she would say, “You strained something in your groin. Heat/ice/pain meds/rest. Good luck.” But because of the upcoming road trip that we had just finalized, I needed to get it checked out. There was no way it was a good idea to use my ExoSyms in this condition. All the muscles on my right side, glutes, hamstrings, quads, the IT band, everything was gripping painfully to try to help the sharp, constant pain in my groin.

Yes, indeed, the gist of the conversation went as expected after the exam. (“Is there tenderness there?” Yes. “Here?” Yes. “Here?” Yep.) My doctor presented options and then asked what I would like to do. One option was to be sent to a specialist whose first appointment was probably months down the road. Another was to do some imaging. I picked the MRI and asked if my lumbar spine would be visible on it as well. It’s hurt 100% of the time since November and I’ve been wearing the brace every waking moment since March. It’s clearly something more than arthritis, and if there’s anything that can actually be done about it, I’d like to know.

She said, no, that she’d have to put in an order for a separate MRI for the lumbar spine, and would I like her to do that? I said yes. Then I waited all of Thursday and into Friday to hear from the MRI people.

Friday afternoon, when I got the call, she asked if I could come in that night at 7:30. “When’s your next available appointment after that?” I wondered. June 7th. The day I’m supposed to be at the Hanger Clinic. “Yes, I can make it at seven thirty.”

She then proceeded to ask me lots of questions, like if I’d ever had anything metal stuck in my eyeball. “Are you claustrophobic?” Uh…no? This is one of those questions where the answer is 100% dependent on the situation. If the space is small enough, sure, I’d panic. I hope I never discover what size that space is. She told me to remove all metal and wear clothes that are easy to take off because I will be putting on a gown. After we hung up, anxiety twisted my stomach and I watched a couple videos about what it’s like to get an MRI. If I start to feel upset, I should do square breathing and take a “wait and see approach” before pressing the panic button. Then I did a long meditation for anxiety. (I have neglected my meditation practice and it’s only occasional at the moment.)

It’s strange, but not unpleasant, to be in a nearly empty hospital. The MRI tech, Jasper, tells me that I’m dressed like I’ve done this a lot. I tell him that this is my first MRI (but I add in my head that I do understand what it means to not wear metal). It turns out that I do not have to change into a gown. While I am happy to hear that, I am very concerned that I am wearing shoes and that Jasper is not concerned about that.

He rips open a packet of foam earplugs and I stuff them into my ears. I climb onto the slidy bed and Jasper hands me “the uh-oh button,” which is actually a cord with a bulb on the end, as on a blood pressure cuff.

He says I should be as still as I can. I ask him if I’m allowed to do deep breathing wherein my belly would move up and down. He tells me to just close my eyes and breathe normally. I wonder if he’s ever felt anxious in his life. 

I’m loaded headfirst into the tube. There’s a speaker near my face and Jasper asks if I can hear him. So I’ve got my uh-oh button in my hand, and I can talk to Jasper if I need to. I close my eyes and try to relax.

People with cerebral palsy often retain the startle reflex that babies come equipped with. The startle often turns into a spasm. 

When the first noise comes, everything in my body clenches, and I mumble, “Holy crap. Okay.” It’s loud like a fire drill. There’s knocking and banging and beeping that constantly changes. Maybe there’s a rhythm for a while, then silence, and then more nearly unbearable cacophony.

It’s not great for my startle reflex and I really, really do not like this, but I try to breathe (not too deep) and relax. I close my eyes and attempt to focus on a song. I summon Art Garfunkel’s voice to my mind:

When you’re weary

Feelin’ small

When tears are in your eyes

I will dry them all

I’m on your side

My mind jumps ahead, garbling the lyrics.

Sail on, silver girl

Sail on by

Your time has come to shine

All your dreams are on their way

The blackness beneath my eyelids seems to be moving and I wonder if Jasper is adjusting my slidy bed. Am I moving? I can’t tell. I’m disoriented. I suddenly understand the phrase “it feels like the walls are closing in on me.” I’m really scared to open my eyes. I don’t want to know how close my face is to the plastic tube surrounding me. What if it’s too close for me to handle and I find out that this space is the space that sets off claustrophobia? 

I force my eyes open. Oh, there’s more space than I remembered. It’s not so bad. I am not moving. Light is better than darkness now. Eyes open is better. Breathe.

See how they shine

Oh, if you need a friend

I’m sailing right behind

Like a bridge over troubled water

I will ease your mind

Each time the noise stops, I brace myself in the quiet for the next assault. I know it’s coming, but I don’t know when or in what manner. Each time it comes, my legs jerk. I’m trying to be still. I’m trying.

Hello darkness my old friend

I’ve come to talk with you again

Because a vision softly-ee creeping

Left its seeds while I wa-as sleeping

I grasp at any lyrics I can remember to stay focused on something.

I turn my collar to the cold and damp

When my eyes were stabbed by the flash of a neon light

I don’t know how much longer I can do this. But I cannot press the uh-oh button because that means we will stop and I will not get the images. It’s not the tube that’s the problem. It’s that I must hold still and be surrounded by all this horrible noise.

Jasper tells me we have seven minutes left. They are very long minutes. And then he says that one of the images is blurry and needs to be redone. Of course it is. How could it not be?

Finally, we are done. With the first one. Jasper sets up the slidy bed for the hip one now. He says, “Your earplugs don’t look like they are in very well. Was that really loud?”

Yes, of course it was. You told me it was going to be really loud.

He grabs a pair of headphones and puts them on over my earplugs. Well, that’s much quieter. Jasper then wraps that stretchy stuff they put on your arm after donating blood around my shoes. Yes, now my feet are bound together. Hmm. . . will this cue more panic or less? Lastly, he puts a plastic shell-type thing over my legs. More panic or less? Less. The weight is good; my body wants to relax under it rather than fight against it.

This time, I enter the giant tube feet first and stop with my head at the entrance. If I look up and back I can see a bit of the panel over the fluorescent light that is clouds and blue sky. 

Here we go again. The noises are loud but not deafening now. I count the marks and scuffs I can see in the plastic. I think about all the people who have gone into this tube, scared and in pain. I think about those who squeezed the uh-oh button. I count the marks again and breathe. I am here. I am okay. I am relaxed. I am here. I am okay. I am relaxed. 

My mind bounces around Beatles songs. I jump to the opening of Ragtime: “In 1902, Father built a house at the crest of Broadview Avenue hill in New Rochelle, New York. And it seemed, for some years thereafter, that all the family’s days would be warm and fair.” Now “Wheels of a Dream.” Joan Baez tries to sing “No Woman, No Cry,” to me, but I can’t focus. What if I run out of songs? You are not going to run out of songs. I can’t do this. How much longer? I am here. I am okay. I am relaxed. 

I try the grounding technique of focusing on five things I can see and five things I can feel. I count the scuff marks again. I want to be done. I want to be done. I want to be done.

I do survive it and I do not press the uh-oh button. I hope that I never have to have another MRI in my life.

When I come outside to where my husband has been waiting for me, it is after 9pm. It’s just a handful of minutes later that I am safely home, in bed, where I should be on a Friday night. And it feels already like that was someone else’s life. 

The results are in by Sunday, the 16th. I will be unsurprised if it says, “Everything looks good.” I will be equally unsurprised if it says, “You need a hip replacement.”

Possible anterior labral tear. Now this is ironic. I had just discovered what a labral tear is the week before. With all the chronic pain I’ve got going on with my right hip, I wouldn’t be surprised if I have that, I thought. Boom. I don’t think I’m doing “manifest your life” right. To properly diagnose the tear, I could have an arthrogram, where they inject dye into my hip and put me through the MRI again. Oh, no thank you. Let’s not if we can help it. 

So PT it is, for now, with possible arthrogram and possible surgery down the line. I am sad and frustrated. I know that it’s the right call and that it’s okay to postpone the trip to the Hanger Clinic. I don’t want to go on a road trip to a forest if I can’t walk around in it.

Right now, the pain is constant, sharp. It hurts more to do any weight bearing. I need to rest after I chop vegetables. With each new pain, I think this is the one that’s too much. Too much for me to be a functional, pleasant person. That’s what I thought with my back. (Which, by the way, has some moderate degeneration. Which is a bummer but sounds about right.) This time, I think so again. This is the one that’s too much. I am tired. I would like to be put in a medically induced coma and pumped full of pain meds and sleep for a week. Then you can wake me up and we’ll reassess.

I am not in agony. I am not near an 8 or 9 or 10. Or even a 7 mostly. It’s just that it’s All. The. Time. I’ve haven’t talked about it recently, but my throat has hurt every minute of every day since September. My back every minute since November. The tightness in my neck and shoulders every minute for years. And so many other things, too. It’s exhausting.

I am not in agony. But I am also not functional. And that’s hard. I’m feeling down about it. I’m also trying to be rational and not wallow. This is where I am right now. We’ll do what we can.

Wednesday the 19th I went to PT, back with my original therapist, C. Carefully, and trying not to become overwhelmed, I related what’s happened since my last, oh-so-positive session. It didn’t seem like my two PTs had spoken about the way we’d dialed back the ExoSym practice. I hate how you have to tell everything that’s happened over months while they question you and type and you know they’re not really understanding the full picture. I told C I was getting up off the floor when my groin popped, and she mimed getting up from one bent leg and explained how that can cause hip strain. Uh, no, that’s not how I was getting up! I know it’s been six months since you’ve been here, but don’t you remember how I’ve never in my life had the ability to do that? Of course I’m not really mad at her, just sad and frustrated.

So. A labral tear does not heal on its own. Physical therapy just strengthens everything around it. I have already spent years trying to strengthen everything around it, and because I have CP, those muscles will always be weaker than an able-bodied person’s. It doesn’t look good. 

I think I am at the pain management stage in my life. Give me the prescription drugs. It’s tough because pain is in your head. An amputated foot cannot hurt, for example, but phantom pain is very real and very horrible. I think my brain is doing odd things with pain signals. I don’t think my back has degenerated much more over the last six months (the condition has been there a long while), but it was only after an acute injury in November (that healed) that my brain decided to do a constant pain signal. Same thing with the throat. There is no reason we have determined that there would be chronic pain there. Hence, the desire for a coma-break. The equivalent of turning the computer off and back on again. Perhaps a chronic pain meditation retreat? 

It seems like an overwhelming task to rewire the brain.