Rita’s Rat Lungworm Recovery Update – Prognosis

Where am I in my rat lungworm recovery?

A year ago, they thought I wouldn’t walk again. They didn’t account for my determination.

Rat - Lungworm Hurricane RitaThis day last year I slept about 20 hours of the 24. I was wearing a diaper because I could no longer control my bowels, weighed about 99 lbs, and could not sit up, stand up, walk, eat, drink, or get dressed by myself.

You can see in the picture to the right, I couldn’t finish putting sunscreen on my face. It tired me too much. That is as close to a shaka as I could put up. I thought I was giving you a genuine Hurricane Rita photo in this shot.

I couldn’t even trust my own mind. I was hallucinating.

Captain Planet had made several appearances in the toilet, bus stops showed up across the street, and dried leaves piled by the commode. I talked my way through my dreams, and I couldn’t tell they were dreams until I’d reach for whatever item it was that I needed to grab, and of course, it wasn’t there.

I’d been sent away from the emergency room at the Phoenix VA Hospital twice and the West Valley Hospital twice with diagnoses that didn’t even BEGIN to explain why my skin was so sensitive that a brush of the hand would feel like a wrecking ball and why I’d gone from being able to run 20 miles without thinking to not being able get out of bed on my own in less than three weeks. A Urinary Tract Infection? Traveler’s Diarrhea?  To say I was scared would be grossly inadequate. I felt like there was a fog that had settled over my mind in a thick blanket, leaving only a bit of space beneath for my thoughts.  I could find them and make sense in the confines of my mind, but when I needed to bring the thoughts out and convey them in conversation, I could not find the correct words. At times, it was as if I was picking random entries from the dictionary.  I could feel my mind failing.

It was Hell. I was in limbo between life and death, but nobody knew what was happening to me.

John was by my side constantly. He helped me sit up, stand up, carried me or drug me sitting on a chair when I couldn’t make it to the bed or the bathroom, fed me, gave me drinks through straws, and dressed me. He told me I was beautiful, strong, and the Queen of the Universe over and over while I sobbed in confusion and fear. He’d tell me the same things as he checked to make sure I wiped my ass properly.

He made Hell tolerable at moments, and even made me smile through tears in others. He put up with my random fits of terror and fury, confusion and disgust.

Losing my father, then losing my body was not easy.

That was last year at this time. Only a year and a month had past since John had come to tell me he wanted me in his life when my colon and bladder were completely shut down…not to mention my legs.

Zero. Reflexes.

My neurologist said he was concerned about permanent paralysis. He told everyone but me.

That was good.

I didn’t put much thought into that being a possibility, mostly because I couldn’t put much thought into anything since there were parasites munching on my brain.

rat-lungworm survivor Aurita MaldonadoWhen I first was released from my six week stay in the hospital (four of which being spent as the youngest person in the nursing home while I learned to walk again), I was able to stand for 15 minutes using my walker.  I decided it was time to use the gym as my physical therapy. I went on an I.Will.Run.Again. mission, working my butt off in the gym just like physical therapy and suffering immensely for it, though not without extraordinary rewards.

Nerve damage through the lower half of my body, plus atrophied muscles cause copious amounts of pain when agitated.  I didn’t and still don’t care.

I just want to move!

I fell in Zumba class over and over. I tripped, wobbled, stumbled, tumbled, skid, slid…you know, all the things you hope you don’t aim to do in a Zumba class with 50 other students. What could I ever do but laugh, shrug, and shake my head?

I just want to dance!

I was on immense doses of Oxycodone and Gabapentin in those days for pain management, yet after I finished at the gym, I’d barely be able to move from the couch for the rest of the day. It didn’t help that I’ve been left extremely sensitive to cold temperatures, and it was winter in Pennsylvania.

Let’s fast forward through the months of recovery, the sobbing, the sweat, the falling, the quitting, the crying, the starting over, the quitting again, sobbing some more, etc…to now.

John and I are in Moab, UT, the outdoor mecca. We moved here because the Universe pushed us here by way of Kay Howe, and every bit of it feels right.

rat lungworm recovery

We went to Arches National Park a few days ago with some of our friends that we met in AK, Gabe and Krystal. We planned to do a 7.2 mile hike with them. This was going to be my biggest distance covered on foot since the parasite. The thing is…on our way to meet them at the trailhead, we got a little confused and somehow managed to hike another two miles on a different trail.

Don’t ask.

I ran bits and pieces of the hike to catch up with the group (once we finally found them…exactly where they said they’d be), since my trigger finger is perpetually happy when I’m in nature with a camera. I was grinning ear to ear the entire time, in absolute awe and wonder.

Freedom of movement is unparalleled happiness.

9.2 miles!

It has been just about a year since I was admitted to the hospital dying.

Right now, I can’t even begin to deny that I’m absolutely living.

hurricane rita jumpingWhen I was released from the Phoenix VA Hospital, I could stand for a solid 15 minutes with my walker. I could barely put my socks on (and not without excruciating pain). When I tried to jump in the ensuing months, I was often met with disappointment. I didn’t have my first successful jump until March. I fell over and over and over again while trying to get my “hops” back.

Now in November of 2013 I can jump. It hurts, and it’s not nearly as easy as it used to be, but dammit, I jumped while hiking this weekend.

The one things that cannot be measured in a recovery based on chronic pain management and nerve damage, is a persons simple will to overcome it and move beyond it.

I’ve been asked a lot lately, since I’m in a new town, how far along in my recovery I consider myself.

This recovery has had A LOT to do with sheer determination to improve and adjusting to my new relationship with pain. Every nerve pulse in my lower abdomen, legs, and feet fires differently now. Spasms could mean any number of things from thermal regulating problems to having a full bladder. I’m down to 200 mg of Gabapentin three times a day and will be taking the next step down to 100s tomorrow.

So, how far along am I?

I’m hiking over nine miles, jumping, and jogging on uneven terrain again (without falling too epically). Reaching that level took me a year of specific dedication to improving my balance, stamina, and strength.  Yet, I’m still in an insane amount of pain, and I’ve not had the opportunity to experience a single painless day since I began getting sick in Oct 2012.

How far along am I?

I’m not sure, is the honest answer. The pain is gnarly, but nowhere near as horrible as I experienced in the hospital. My legs still feel like mile 40. Each step is a challenge, but I’m walking. There’s a 5K in 10 days that I’d like to run with my lover. There’s a 10K on December 7th that we’ll run as well.

Yes, that’s a far cry from 50 miles, but it’s a beginning!

I went from being unable to flex my foot to running 3 hard miles in the first year. Where could I be in another year?

Grand Canyon you say? Rim to rim to rim you say? Yes. I’ll be running across the massive chasm twice. Sometime between Oct 6-10t, 2014.

Does that mean I know where I’m at in my recovery?

Absolutely not.

I just know that if I could regain my reflexes, run, slackline, and hike again all in one year, I could definitely add another 40 or so miles in the Grand Canyon onto that this year!

Now you know what I know…

LIVE, laugh, love, RUN!

 

 

, , , ,

6 Responses to Rita’s Rat Lungworm Recovery Update – Prognosis

  1. Roger Smith November 18, 2013 at 12:21 PM #

    AWESOME!!!!!!

    • Hurricane Rita November 24, 2013 at 12:30 PM #

      🙂

  2. Susan November 18, 2013 at 8:39 PM #

    Dear One,
    What an inspiring message for me to get, today of all days, November 18th, 2013. Exactly 5 years ago today I had to watch my wonderful husband put into a hospital bed knowing that he would never get out of it. Today is the start of 7 days of trying to remember only good things about my amazing Paul, it took him just 7 days to succumb to cancer. After 9 months of watching him die, it was finally coming to an end.
    I am so happy to see the picture of you jumping, wish I could do it with you. I pray that your pain will go away in one more heartbeat and you will know life “before the worm”!
    I love you and John and hope your new life and adventures will be more that even you could imagine.
    Please offer up a Hello and good wish for Paul next Monday evening around 7pm, tell him it’s from my friend.
    s

    • Hurricane Rita November 24, 2013 at 12:30 PM #

      Susan,
      John and I are sending our love and well wishes during such a hard time. We are sending you good energy and lots of hugs! Life “before the worm” sounds interesting. I’d be super excited to feel a day of complete comfort again. We will send Paul some energy and thoughts this week for sure. 🙂

  3. Vinny December 13, 2013 at 12:33 AM #

    Hey Rita,
    Just wanted to let you know that we have a family that doesn’t know the word “quit”. You and that ratworm, Me and my Cerebral Palsy and Chip and the paralysis. we take what doctors say and laugh because giving up is not an option. i mean come on…….it’s not in our nature to do that. Just know that if at any second of any day you feel like somethings tough to do just listen to that voice in your head….its me…….saying don’t give up ever. your one of the toughest people i know and no matter what life throws at you. your cousins got your back

    • Hurricane Rita December 17, 2013 at 12:06 PM #

      Thank you, Cousin! You nearly brought me to tears with that message. I love that our family is so strong and understands the intricacies of recovery and defiance of doctors. I love you.

Leave a Reply