Two whole years from my last bout – a drawn out recollection

I woke up this morning, a bit more anxious than most mornings. I realized that today is my two year anniversiary of going into the hospital and getting dx’ed with GBS.

I’ve written some of this before, so I don’t mean to bore many of you with the details again, my apologies in advance;

We were smack dap in the heart of an ice storm that started the 12th of January. I had moved my wife (4 months pregnant) and my 3 year old little girl to another town to live with relatives who had power. I stayed at our house, taking in some neighbors who didn’t have ANY heat (my neighbor directly to the north had no heat, and it was 29 degrees in his house. Candles wern’t doing the trick for him). One of the people we knew on an adjacent street was killed from carbon monoxide poisoning, when he brought his barbeque grill in for heat.

On day 9 we had power restored – still no water, but power was back on. I took everyone home, and went to pick up my family. That night I went to get a cold bottle of water from the fridge, and when I started drinking I couldn’t feel the water in my mouth, spilling onto my feet, running down my cheeks. I knew, kind of oddly, what was going on. I had been down this briar patch before. I waited for my wife to wake up, nothing heroic there, just that she was sleeping in her own bed for the first time in 10 days, and I didn’t want to ruin that for her. After she got up, I told her she needed to call her folks and get them headed our way, as they would need to watch our daughter for a couple of days.

I next remember things like a punch drunk boxer, kind of blinking my eyes open from time to time…I remember getting multiple IV’s, a catheter (sp?), and my breathing was starting to become stressed. After that, I recall being in ICU, and undergoing IVIg treatments, and my chest was moving up and down on its own. Things are still patchy until I start to wean off the ventilator. The medical crew attempted to extibate me once, and I failed to maintain a “normal” blood/oxygen saturation so I was re-intibated that evening (talk about a sore throat, all I wanted was a drink of water) Eventually, some weeks after that, I was extibated, SUCCESSFULLY and stayed that way.

I continued to have some paralysis in my diaphram, for some time, which kept me in the ICU. Once that started flexing and reflexing as it should I was moved to re-hab. I stayed there a bit more than a month, and was released home towards the middle of April.

Continued re-hab at home, but that’s where things took a turn for the worse, mentally. I struggled that my three year old’s sippy cup looked EXACTLY like my “two-handled assist cup” that I was given from Occupational Therapy. What the crap had happened????? I became angry/sore/angry/mad at the world/angry/sad/angry/emotionally exhausted/angry/………..

I failed to complete the required reaction time the first time I attempted to be cleared to drive, and my wife was again put into chauffer mode.

Continued outpatient re-hab, things getting back SO slowly this time. When I was 19 and playing college intramurals and got sick with GBS, I “feel” that I bounced back REALLY quick. 6 months down the road, I was out playing pickup games and wrestling with my brother from time to time. This time was much, much slower. Having the left side of my face completely paralyzed wasn’t helping either. Somewhere during this time period, I logged onto the GBS-CIDP International site for the first time.

Kept worknig at reaction time, by working hard at re-hab, starting to type more (I’m a Court Reporter), and things are still getting better. Just SO slowly. My re-hab doctor begins to wean me off of some pain medications.

I was cleared to drive from the hospital, after passing all of my required reflex times (the person to set the curve for that test must be part CHEETAH or something, I was smoking fast and the person administrating the test would only tell me I was in the 50th percentile or something – finally got to the 77th percentile and we called it a day). And I was able, a month later, to drive my wife and little girl to the hospital yet again, to be there to witness/hold/hug/scream out freaking loud like some kind of crazy hillbilly in the delivery room when my second little Angel was born the first week in June. Kind of a neat scene, as the OB doc had taken time to check on my wife and I multiple times. I can recall us both crying and screaming (well, I was screaming. I’m pretty sure he maintained some form of composure as he was sewing my wife up).

Now, two years later, I’m back in the saddle at work. Cranking out words and transcripts with the best of them. I’m still on some of the medication (I’ve made VERY determined attempts to wean off of them, with the blessing and guidance of my docs, and still have to take one to keep the pain/tingling to a tolerable level). My wife and I are in the process of building a home together. Before I was dx’d, we had purchased a tract of land in the country and wanted to build a home there “someday.” Well, GBS X 2 proved to me that life is far, far too short to keep telling myself, someday. We broke ground right after I cranked out my longest transcript of my life, on time, and things appeared to be working out just fine.

I read the comments from three of the forums almost daily, the main forum, gbs adult, and the lighter side. I don’t always respond, but I have been through what many others are going through, and that offers encouragement both to me, and I hope to others.

I know that my new lifestyle, of working as hard as I can during the day – and going home at night and spending time wrestling/laughing/reading books (Baby Llama, red pajama last night)/playing/drinking tea with both of my little sweeties is exactly what I’m supposed to do. GBS, for me, kind of re-focused things to a lazer beam for me. What is important and what is not.

I tell my wife that I never want to gloat or brag, but when I get out to our new house on weekends and work up a good lather, I often think about lying in an ICU room, not knowing if it was day or night, my pregnant wife sleeping in some crummy waiting room down the hall, my little girl being scared that Daddy had a band-aid on my nose (of all things, a band-aid, where my NG tube went in)…..

All things considered, GBS is not a good thing to go through, but GBS (this time) helped me become the person I wanted to be.