The Mystery Illness Diaries: Chris Ayala, Meet Guillain–Barré Syndrome

First published on March 20, 2010 at 9:40 p.m.

I have officially been diagnosed with Guillain–Barré Syndrome! Basically, it is a very rare condition where your own body starts attacking the protective covering around your nerves. This is why my hands and feet have gone numb and why I've been losing my ability to walk over the past two weeks. It is not hereditary, it is not contagious, they don't really know WHY people get it, and only 2 out of 100,000 people might get it. The neurologist himself said it's nothing I did wrong and that basically it is just plain BAD LUCK that this happened. My dad always said I was one in a million... turns out I'm also 2 in 100,000 ♥. Treatment started today - for the next five days I will be receiving an IVIg treatment which is a 4-5 hour IV drip of basically stuff that comes from plasma donors. I've also started working with Physical Therapists and Occupational Therapists, who have been evaluating my ability to walk stairs, dress myself, get on/off the bed/toilet/chair, etc. I am now the proud owner of a super-sweet cane! The good news is that this damage is NOT permanent. The bad news is that it could take me anywhere from several weeks to 6 months before I am walking/functioning normally again. The IVIg is stopping the Guillain–Barré from getting worse, but it does not really cure it. Guillain–Barré usually runs its course on its own, and thusly my body will re-grow that protective nerve coating on its own, but the doctors told me that the nerves heal themselves on their own time, and there's really nothing we can do to speed up that re-growth process. Here's hoping that I'm good to go in a few weeks and that this numbness/weakness/pain doesn't last another half a year! :) The other good news is that I should still be able to go to South America with Wolf in October! YAY! The other bad news is that I will most likely have to cancel the epic Midwest + East Coast Tour De Force I had planned out for the next two months. And I also had a little cry this morning when the neurologist told me I would probably not be running Grandma's Half Marathon this year. He said "it is not an impossible possibility" that I could maybe possibly walk it. So for now I am just going to try to heal heal heal and hope for the best. Even in the face of some of these disappointments, overall I am SO glad I have finally been diagnosed! No more blood draws, no more MRIs, NO MORE SPINAL TAPS, and most importantly, in place of all of those things, I now have Knowledge and Hope ♥. My spirits are a millions times higher just knowing that treatment has started and that someday I will be able to put a canoe on my shoulders again. Even if it takes me a long time to get back to that point, I am SO grateful that I CAN get back to that point. This whole thing has been incredibly frustrating and scary, but now at least I KNOW. And you guys have made this whole Impromptu Medical Adventure so much better with an astonishing amount of prayers, calls, texts, messages, visits, and deliveries from the Gift Shop :) Today I was so lucky to spend time cuddling a bunch of cute babies (thank you Kristin and Anne and Josh Gorham!) which cheered me up SO MUCH. My Renegade Running Family has come out in DROVES, armed with silly gifts, love, and knowledge of Hospital Financing (thank you Robin, Shannon, Lindsey, Patricia, Alicia, and Chief Financial Adviser Tina!). AND COTTEY GIRLS! I am blown away by the unending line of flowers, fruit baskets, CATERED FOOD TRAYS, ducks and daisies that were brought to me today via Erin Kathleen McCann Heintz and an entire ARMY of Cottey girls! Erin is going to send me a list of all of you amazing beautiful ladies so that I can thank you all personally. You guys made my dad cry a little (and me) ♥. I am so relieved that the Mystery Illness has been revealed, and that from here on out, I can focus on healing. Thank you to each and every one of you for being there with me, every painful, wobbly step of the way ♥.

P.S. Chris Dj-Chavo Ayala, you made laugh out loud SO HARD when you wrote that you were going to punch my Mystery Illness right in the dick. And I'm not the only one who laughed - several people have mentioned your punching prowess to me, and they are all now waiting with baited breath for you to take action. So without further ado, Chris Ayala, meet Guillain–Barré. Let the punching begin ♥.

The Mystery Illness Diaries: Post-Spinal Tap and Other Happenings

First published on March 19, 2012 at 11:05 p.m.

Hey everyone! The spinal tap really freaked me out but turned out to be fairly fast and only occasionally painful. WHEW! They are in fact testing for Guillain–Barré, as several of you have guessed (I feel an extra layer of safety surrounding me with all of these medical professional friends ♥). Last I heard they were checking my blood to make sure I don't have an allergic reaction to the IV treatment. I haven't been told that it is for sure Guillain–Barré though, because even though I've been here since noon, the neurologist hasn't come in to talk to me. Thankfully my nurse was pissed off about that and sent a patient advocacy person in not long ago so I could file a "concern," which is apparently an anonymous way to let the nursing staff put pressure on a doctor who isn't visiting their patients in a timely manner. My deeply ingrained Minnesota Friendly syndrome made me feel a bit guilty for filing a concern, but whatever, the fact that I've been losing feeling in my legs concerns me more ;) So, no IV treatment for me today, but hopefully I will see someone right away tomorrow who can tell me what we're dealing with, and how we can deal with it quickly, with no nasty lingering effects. Thank you SO MUCH to everyone for the amazing amount of phone calls, texts, visits, flowers & gifts, JOKES, and most of all LOVE and prayers! ♥ You are all so amazing, and I am a very lucky girl ♥. I also want to thank Sarah Weitkuhn, who came running to the hospital as soon as she heard the words "spinal" and "tap," Arna Rennan for bringing me in and staying with me all day, Cole Maki and Toby for coming to give me sibling love, Brian Dack for making me laugh even when I was crying, my amazing RENEGADE Family - Lori Rothstein, Laura Solmonson, Alicia Hummel, and Brad Christensen - for literally entertaining me for hours and making me forget I was even in a hospital room, and to the ever amazing Suzanna Rasp-Lambert, who had already ordered beautiful flowers and the cutest, fluffiest DUCKY ever from the gift shop before was I even fully checked into my room!!! Actually, the card said "Love, Zenna and the Cottey Hotties," but I deduced that Zenna probably meant Zanna :) This mystery illness has weakened my powerful legs, but not my power of deduction! ♥ Oh, and I have been moved to room 8247 on 8E, and my direct number is now 218.786.7327 - thanks for letting everyone know, Dayna Bissett ♥. So much love to you all! ♥

The Mystery Illness Diaries: THIS. IS. SPINAL TAP!

First published on March 19, 2012 at 2:13 p.m.

All checked into the hospital - they just ordered a spinal tap. Scary, so quick! Tell me your favorite joke. The dirtier, the better. It will be a fabulous distraction ♥.

[Editor's Note: At the time of the above post, many people sent me hilarious jokes, all of which helped to lighten the mood ♥].

The Mystery Illness Diaries: It's Hosptial Go-Time

First published on March 19, 2012 at 10:41 a.m.

Update: The MRI came back normal which is good but now my face has begun to twitch. The doctors called and are having me checked into the hospital immediately so that I can see a neurologist. I will be there at least overnight. Here is the list of things we know it is NOT so far: Lyme's disease, lack of B12, thyroid, lead poisoning, blood count is great, lipids are good, MRI is normal, and crap there's a bunch of other things that came back normal that I can't think of without the list in front of me. Symptoms: still have an incredibly hard time walking up any sort of stairs/hill, getting in/out of cars, getting dressed, feet are completely numb can't wear regular shoes, legs numb, painful to walk now, hands getting more numb especially right hand, face is now twitching, still sore/stiff neck/head/back even after a massage yesterday. I will be in St. Mary's hospital Room 8267 in 8 East. I don't have internet on my phone but I asked if I could bring my lap top - if I can't facebook then try my cell :) THANK YOU to everyone for all of your love, support, and prayers, you are making this easier to face and I love you all ♥. And don't worry, I'm gonna beat the fucking shit out of whatever this is. Promise ♥.

The Mystery Illness Diaries: Not Lyme Disease

First published on March 17, 2012 at 10:23 p.m.

General Update: Well, it is NOT Lyme's disease, so yesterday they had my neck x-rayed and then checked me into the emergency room after work to get an MRI of my head and neck. I won't know any results until Monday, and hopefully by then I'll have a neurologist... my doctor has been awesome about advocating for me and stressing the importance of bumping me up on the waiting list to see someone. Every day it has gotten harder to walk and dress myself. I can't stand up while dressing anymore, and the numbness and fatigue in my legs has made it incredibly difficult to walk up stairs without assistance. Pain has increased too. If I don't get to see a neurologist on Monday I may just end up checking myself into a hospital. Here's hoping they figure out what the hell this is, and take care of it fast.

The Mystery Illness Diaries: I Have Good News and Bad News

First published on March 14, 2012 at 10:56 p.m.

Good News and Bad News Time! Good News: Ashley Wakefield and I just bought tickets to Peru! We will be backpacking from Lima to Coast Rica for three months, and will be spending our joint birthdays on Machu Picchu!!!! It's the Honeymoon of a lifetime!!!! Oh LIFE, you are so full of roller-coastery ups and downs, but you sure as hell are never boring ♥.

Oh yeah, and the Bad News is that I might have Lyme's disease (at least that's what we're hoping for).

Andy Grammar - Keep Your Head Up

The Mystery Illness Diaries

Well HELLO there, little Irish Blog! It's been well over a year since I have updated, and although I have not been faithfully posting, I have not forgotten you. Time for a resurrection!

I started this blog because I wanted to write a little bit about the adventures I was having when I was living and working in Ireland at the end of 2010. Obviously I've been back in the States for over a year now, and a lot has happened since I left the Emerald Isle. One of the biggest life changes that occurred was last July when I suddenly became a runner, working myself from Couch to Half Marathon (13.1 miles) in 3-4 months ♥. My journey as a runner has been pretty life-changing, and I have often thought of recording my many running adventures and mishaps right here in this blog. As soon as I feel healthy enough to run again, I would like to make good on that intention.

Which brings me to my next Major Life Event (as well as the title of this post): my Mystery Illness.

On Sunday, March 4th I began having some incredibly strange symptoms that included numbness in my hands and feet, stiffness and pain in my head/neck/back and jaw, fatigue, nausea, and EXTREME weakness in my legs, to the point where I couldn't walk up and down stairs and struggled to get out of bed. Pretty scary for a girl whose strong legs had recently carried her through two Half Marathons and over 10 other 5k, 10k, and 15k races.

Over the past month I have logged nine days in the hospital, given enough blood samples to quench the thirst of a Zombie Army, have stumped and confused a myriad of doctors and specialists, had an MRI, a spinal tap, and am going to go in for a few CAT Scans later today. And to this day, no one seems to know what is wrong with me, why this all happened in the first place, or what kind of recovery plan I will need to follow. This entire process has been pretty scary at times, and frustrating throughout. But thankfully, I have had an incredible amount of support from family and friends from around the world, literally. Facebook has allowed me to chronicle my Medical Maladies in blog-like status updates that I write fairly frequently. I started writing my updates as an easy way to update the family members and friends who were following my journey all at once, but to be perfectly honest I now write as much for myself as I do for them. It's incredibly therapeutic, to say the least.

I'd like to start posting my updates here on this blog, but rather than try to recount my entire journey now, I'd rather just take all the posts I wrote on facebook and move them over here, one at a time, in chronological order. They will be unedited, copied and pasted in here exactly the way I posted them originally.

In other words, it's time to Tilt The Milk on this bitch ♥. Let the Mystery Illness Diaries begin!