how am i? well, i've been better

[rone]

Exactly 6 months ago, I felt a little dizzy, like I was wearing someone else's glasses. It was annoying, but I just got on with my day. That night, however, I started experiencing double vision while watching TV. I decided to sleep on it, hoping that I would be back to normal in the morning. Unfortunately, the next morning I still had the double vision, and in addition to that, my left leg wasn't working quite right. Upon calling the advice nurse at Kaiser, they recommended that we go to the emergency room. After we arrived, I started experiencing a variety of confusing symptoms, and by the end of that day, I was unable to walk or even sit up in bed.

My diagnosis came in around that time: Guillain-Barré syndrome. It's an autoimmune disorder where the immune system, triggered by an infection, attacks the peripheral nervous system's myelin sheath. In addition to the paralysis it caused, it also affected my autonomic systems, which made a mess of my blood pressure, heart rate, and even my insulin levels. My paralysis was particularly severe, rendering me almost unable to move between my ankles and the top of my head. I required a tracheostomy in order to continue breathing, as well as a feeding tube to maintain my nourishment.

After spending five weeks in the hospital, I was moved to a skilled nursing facility and spent 100 days there, near the end of which my breathing and feeding tubes were removed. I was then accepted into Kaiser's acute rehabilitation facility, which we had been told was very highly regarded; after arriving there, it lived up to the hype and I made much more progress in the three weeks I spent there. I've now been home for three weeks and it feels really good, despite the fact that I'm still unable to stand or use my arms and hands (I am using Dragon for Mac to dictate this).

The road ahead still has a lot of physical and occupational therapy. I am in excellent spirits, however, and will keep working hard to return to normal, or at least as close to normal as I can. Through this all, I've had amazing support from family and friends, in particular my friend Morrisa, my stepson David, and most of all my wife Kim, whom I love more with every passing day.

Comments

Re

[fabián riofrío (from livejournal.com)]

The family was informed about your ailment but didn't really understand what it was until this post. I'm glad you had great and timely attention and are improving: the only way is up. Keep the spirits up and working hard. You have a lot of people rooting for you.

[ronebofh.livejournal.com]

Thanks, primo.

[racerxmachina.livejournal.com]

I'd missed seeing you around, I'm sorry to hear this was why! I am so relieved to hear that you are getting better. Eric and miss you and <3 you lots.

[ratphooey.livejournal.com]

Oh my gosh, what an ordeal! I am so glad you are still with us, getting good care, and making progress.

[roseembolism.livejournal.com]

Oh man, I'm so sorry to hear this happened to you, and I'm glad to hear you're back home and in physical therapy. Both Sandy and I are really rooting for you, and we'll be in touch.

[oh6.livejournal.com]

Yikes! Sorry to hear that this misfortune befell you, and best wishes for your continuing recovery.

[(Anonymous)]

Wow rone, I'm so sorry this happened to you...now I know why you didn't want to come to lunch with me...super glad you're home now...sending you and your fam those groovy strength and health vibes...

[ronebofh.livejournal.com]

Thanks, Bernadette!

[sweh.livejournal.com]

Well, fuck! That's just shitty.

[khrister.livejournal.com]

Yikes!

I hope your recovery goes well.

Info about GBS

[2wanda.livejournal.com]

http://www.gbs-cidp.org/

[(Anonymous)]

Damn dude.

Happy to see you writing, regardless of input method; also happy that the Kaiser Acute rehab people were helpful. I hope your recovery proceeds apace.

[ronebofh.livejournal.com]

Thank you, anonymous Vermont citizen!

[sobelle.livejournal.com]

That's some intense suffering. Really sorry to hear it but heartened that you're getting better... and at home.

[(Anonymous)]

So sorry to hear about this difficult time Ron! Thanks for sharing and know that I'm rooting for you. Do keep us posted! I wish you a full and speedy recovery. (=Chip)

[ronebofh.livejournal.com]

Thanks, Chip!

[some_other_dave]

Lisa and I both say, "HOLY SHIT!" Glad that you are improving now.

Yay!!!!!!!!

[(Anonymous)]

So glad to hear you again Ron! Autumn was really upset when she heard what was happening with you. She's got a soft spot for you. Me to! Kim is a super hero! I swear she is made of steel. So very happy you are finally HOME! Sending you lots of light and the best juju I can conjure up. Hugs...xoxoxo

RE: Yay!!!!!!!!

[ronebofh.livejournal.com]

Thanks, Judy!

[ewx.livejournal.com]

Alarming stuff. Very glad to hear you're still around!

[fanf]

Bloody hell, that's unpleasant. Keep getting better, and I hope you and your family keep up your optimism and good humour.

[meg worley (from livejournal.com)]

Zut alors! I have had one friend and one student who were laid low by GBS, both the full-out, tracheostomy, whole-shebang variety. I hear that it's possible to have a milder case, but not among my acquaintances. Both made a full recovery, and I trust you will too. I am holding you in the light, as the Quakers say, along with everyone else involved in your return to abnormalcy. It's an enormous ordeal for you all, I know.

[dawn-guy.livejournal.com]

Thanks for the news.

Dragon was a great boon to me in the year I couldn't type, though it didn't let me roughhouse with my kids.

The office manager at my dentist recovered from GBS contracted when she was a hygienist. Hope you recover fully, though i do not wish management positions on those who do not seek and prepare for them.

[dr-memory.livejournal.com]

This makes you the second friend of mine to come down with GBS, and I am starting to wonder about the water at LISA/98. I hope you continue to recover; not a single part of that sounds good. :(

[ambyr.livejournal.com]

Wow. I'm glad you've resurfaced, and I hope your rehabilitation progresses smoothly.

(If it's not too forward, I'll also mention that I work for the National Library Service for the Blind and Physically Handicapped, and that we provide free audiobooks and playback equipment, including breathswitch and mouth stick adaptors that allow our equipment to be used by people who can't use their hands and mobile audiobook player apps designed with accessibility in mind. If free books would help keep your spirits up, I can point you in the right direction to get enrolled.)

[ronebofh.livejournal.com]

That's a very kind offer. Fortunately, I'm able to read regular books at this time. I actually experienced my first audiobook during my recovery and I'm not sure if they're the sort of thing I enjoy.

[loosestrife.livejournal.com]

Man, what a nightmare. So glad you're recovering and back at home.

[emperor]

Well, that's...suboptimal :( Good luck for as speedy a recovery as might be hoped for in the circumstances!

[ceejs.livejournal.com]

Holy hell, that's quite a story and holy hell, a scary thing to live through. <3 to you and so glad the expectations for a full recovery are good.

[kodi]

Wow. I'm glad you're getting better. And thank you for posting this here!

Also, thanks for adding to the already too long list of things I can freak out about next time I decide to go to bed even though I'm having some unexplained symptom or other.

[missionista.livejournal.com]

I'm so sorry to hear about this, and glad you are in good spirits and doing well physically. You are the second person I know who has had GBS. Please update when you can, and let me know if there is anything I can do from afar.

[rbarclay.livejournal.com]

Well, holy shit, Rone. I thought you just went off to la-la-land (FB/twitter) like so many others.

I wish you make a full, and speedy, recovery. And keep up the good spirits.

[http://users.livejournal.com/_nicolai_/]

Wow, that's quite unnerving to hear about!

I hope you continue to recover well.

[vatine]

Dude! I hope you make a full recovery, so you can make a full unrecovery. As it were.

Lamentamos de todo corazon lo que estas viviendo

[(Anonymous)]

Sabemos lo dificil que ha sido esta pesadilla, Deseamos que dia a dia sientas la mejoria.
Lucy y mis hijas se unen a este mensaje y esperamos tu pronta recuperacion, Abrazos y saludos.

[ronebofh.livejournal.com]

Gracias, tío Frankie.

[peglegpete.livejournal.com]

Holy crap -- I'm sad that this happened, but I'm glad that you're on the mend. I send hugs and support from afar. Upwards and onwards.

[canetoad.livejournal.com]

I'm very glad to hear that you're finally home. May the rest of your recovery be full and speedy. Much love to you from me and Paul.

[waider.livejournal.com]

Yikes. That's a tough break. I first heard about GBS when a friend's kid got a milder dose of it; that didn't sound fun, and neither does this. Glad to hear you're in the mend.

Yo-ho!

[epileptikitty.livejournal.com]

Glad you're back, dude.

[christianlarrea.livejournal.com]

Mi querido amigo! Me ha impactado tu noticia! Silvi tiene RArth desde los 21. Sabemos de cerca como nos duelen y nos unen las autoinmunes. Con evidencia puedo decir que la alimentación es vital: no preservantes, no colorantes, mainly; la calidad de vida incrementa sustancialmente.

Siempre es bueno tener seres que te entienden y te cuidan de cerca.

Me alegra que la rehabilitación haya sido intensiva y con progreso evidente y te enviamos toda la fuerza y el espíritu para que sigas adelante.

Te enviaré todo lo que sabemos hace bien al sistema inmunológico para mantenerlo en calma y no ataque con fuerza.

Un abrazo

CL y SR

[ronebofh.livejournal.com]

Muchas gracias, mi linda gente. Por suerte, lo mío no es crónico. Sigan cuidándose!

[reddragdiva]

fffuuuuuuu

Not bothering to look at LJ for the past few years, I wasn't aware of this, I'd assumed you were just posting elsewhere. Didn't know about it until vatine mentioned it to me. Glad to hear you're improving ...