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One year ago today

Today is my one year diseaseversary!

One year ago today, I was called into the restaurant because none of my family's employees showed up for work. I went in, even though I was feeling a little bit sick and weird. I had a mild tingle in my hands and feet. By the afternoon, the tingle was much worse and had moved up my arms. I had a doctor's appointment at 4:45 to have a wart removed. I told the PA that I wasn't feeling well and that I had a weird tingle in my arms and feet. He decided that, because I saw a rheumatologist for the "arthritis" (more on that some other time) in my foot, it was probably related and I should make an appointment with my rheumatologist. He removed the wart and wished me good luck with my arthritis.

By that evening, the tingle turned into pins-and-needles and a heavy pain settled over me, like I was being crushed by an elephant. I was lying on the couch with the TV on, trying not to let anyone know that I was crying, when my husband noticed and asked what was wrong. I started sobbing and said that it hurt so much and wouldn't stop. We went to the ER for the first of seven visits there, trying to make someone, anyone, pay attention to the fact that there was something wrong with me. They sent me home with some Vicodin and directions to call my rheumatologist in the morning. The Vicodin didn't do anything for the pain, but at least it put me to sleep for a few hours.

And that was the end of my first day with Guillain-Barre Syndrome, an immunological, neurological disease that has absolutely nothing to do with rheumatology. It's been one year of hell -- of agonizing pain, of four months in the hospital, of no financial income and no creative output, of a life suspended. I'm not yet cured of the effects of the disease, but I'm better than I was before, and that's something. I've at least started thinking about resuming my life.

In honor of my diseaseversary, please tell me any ways you, your life or your situation have changed in the past year. I'm slowly working my way through your journals, but in the mean time, I'd love to know what you feel have been significant changes.


( 15 comments — Leave a comment )
Aug. 25th, 2009 05:57 pm (UTC)
I moved to DC and started a new job. That flipped a lot of other things upside down as well, obviously, but it boils down to that.

It's really good to see you around again. I hope you're able to resume things for some value of easily.
Aug. 25th, 2009 06:03 pm (UTC)
Holy crap. That's quite a -versary! I'm glad that you're on the road to YAY.

My change has been omg and lotso, so I'll start with the most recent. I just broke up with all of my men (all of whom were long distance) and have started to date my VERY LOCAL neighbour who lives two floors above me. t feels like that has caused a lot of other changes in my life, and therefore I consider it the most significant change of my year.

What are you thinking about doing to "resume" your life? What are you able to/what do you want to do next?
Aug. 25th, 2009 06:15 pm (UTC)
I answered the "new with me" comment from you on my eljay, so let me just say again how really glad I am to see you around here again! Best wishes for a continued recovery and in the resuming-of-you :)
Aug. 25th, 2009 06:21 pm (UTC)
The past year...

- Found out that I was pregnant with Lilly and then had my homebirth
- Decided to go back to school, even though its scaring the hell out of me.
- We've begun seriously considering a different way of life, career and location, trying to figure out how to make things work but unsure that they will. And we're working out a 5 year plan to have something to work towards.

*hugs* I'm glad to see you more around here. I'm glad that you're feeling better and I hope that you're able to continue the path toward wellness and regaining your life. :)
Aug. 25th, 2009 06:49 pm (UTC)
I'm so glad you're getting better honey! Slowly but surely. It'll only make you stronger right? Could I write anymore cliches?

Ummm...first year of marriage was truly blissful, we're trying to sell our house and it's a giant pain in the ass, I STILL have major puppy fever, went on our honeymoon in California wine country, started a new job at a new school where I have lots of friends and am getting paid what I should be paid, coaching softball still...that's aboot it. Going back to school officially Thursday and kids come back next Monday. My life is resuming now as well...

Miss you!
Aug. 25th, 2009 09:11 pm (UTC)
I just looked up Guillain-Barre Syndrome and I can't imagine what you've been going through.

In the past year I moved to Washington DC after a very unhappy year in NYC. The nine month's I've been in DC have been great, I bought a condo, met a great guy, live close to my parents and friends.

Wishing you continued progress sweetie.
Aug. 25th, 2009 09:31 pm (UTC)
Good grief! Guillain-Barre makes MS a walk in the park! I really hope you continue to do better, and quickly. 7 visits--arg! That's criminal! I'm glad you're finally on the road to recovery.

I haven't been around for a while--divorce, mostly. And MS in the past month. And on the plus side, I'm hoping to move sometime in the not too far future.
Aug. 25th, 2009 09:50 pm (UTC)
A year ago, right around this time, I was realizing that something was really wrong with my marriage and trying to find the guts to get out.

Six months ago I left him, and I have been a better person ever since.
Aug. 25th, 2009 10:53 pm (UTC)
Glad to see you back, I hope to hear from you more.

I don't really think anything significant has changed in my life over the past year. I suppose that's a good thing!
Aug. 25th, 2009 11:46 pm (UTC)
a year ago today i was in Belize. i'd been there for 5 days, and i had made the agonizing decision to come back to the US.
What i realized through this whole process was 1 - that i wasn't quite ready to let go of my work in child protection. 2 - not talking to my parents every day is NOT the same as not being able to do so 3 - that my dogs are my life.
So now, oddly, i'm back exactly where i was but am totally different for it.
Aug. 25th, 2009 11:48 pm (UTC)
That's such a nightmare! Is this why you were always in pain? I just can't believe this has all happened to you.

In the past year, I have had my wedding cancelled, been miserable, old, and alone, traveled to Mexico, Canada, and Australia, and bought my first home.
Aug. 26th, 2009 12:55 am (UTC)
In the last year Todd and I got married in Florida, I finally reached my mental breaking point and spent a month in an intensive outpatient treatment program that was absolutely life changing for me. They diagnosed me with I finally believe to be an accurate diagnosis and have me on a combination of meds that I believe have changed me completely for the better.

I feel like a different person, and people have noticed. Also Todd and I decided that I would take some time off work after treatment and in that decision decided that I would not go back to work and would focus on school and go from part time to full time and pursue my forensic nursing degree.

and thats where we are today.

So in short, i believe that in the last year i learned a life changing lesson - even when you cant see it and you're feeling around on your hands and knees in blackness, there actually is light at the end of the tunnel if you dont give up.
Aug. 26th, 2009 02:13 am (UTC)
In the past year, I broke up with my obsessive, depressed, boyfriend, lived in my very own apartment for the first time, chosen what I want to study in college, and improved my relationship with my mother 100%.

On the other hand, I'm still coming home over vacations to work at the same job I've been at for 3 years now, which is less than ideal, but at least I'm employed.

I've learned that I am only responsible for my own happiness, not for anyone else's-- a lesson I struggle to remember, but I'm working on it.
Aug. 26th, 2009 04:28 am (UTC)
My life has been pretty much the same - my kids are older, my husband is currently unemployed, and I just got back from an awesome trip to DC. Today's my 40th birthday, so I'm staring a whole new decade today.

I'm glad you're on the road to recovery. We've all missed you lots!
Aug. 27th, 2009 03:35 pm (UTC)
I'm so glad you're getting better lovey. So glad. *big sigh of relief*

The past year has been interesting. I went from not knowing if Eric and I would staying together on a daily basis and leaving my nanny job to finding a better path with culinary school and knowing that Eric and I will be together for a really long time. Also started working on some of the deep scars in therapy so hopefully I won't have to live chained to them for the rest of my life.
( 15 comments — Leave a comment )