Introduction from a newbie
AnonymousJune 29, 2006 at 2:26 pm
My name is Kurt. I’m a 46 yo white male, living in Philadelphia. First of all, let me say what a PLEASURE it is to find this group!! Since this seems to be about the only place that people would actually want to hear about the major problems this illness creates, and actually find people also going through it, I will describe the experience I went through. What I find so wonderful here, however, is that for 11 years I have been on my own with managing the problems associated with GBS, meaning that no one else understands that I know understands this, and I have associated a host of issues in my life with GBS. These issues are things that only time eventually told me were associated, and now I see post after post of problems that I thought I was alone in experiencing. Things like depression, fatigue, pain, neuropathies, and in general finding myself becoming a lone wolf in the social scene. So perhaps I am not just crazy after all! 🙂 So my story…
The onset was at Labor Day, 1995, during my 5th year as a graduate student in computational chemistry at U Penn, Philly. I was married to a doctor at the time, with an 8 month old daughter. I was on Paxil for depression, and was trying to ween off at the time. I think Paxil is related to the onset, but I also got a gastro/respiratory bug, sort of pneumonia-like, recovered with antibiotics, and the a couple weeks later noticed my pinkie was numb. By the end of the day I couldn’t write. The next day I fell down the stairs at home. My limbs were leaving me. My wife thought I had a brain bleed, so we went to the ER, saw a neurologist, who said come to his office in 2 days. By the time I got to his office, I was in a wheel chair and had no usage of limbs, difficulty breathing, etc. He did a spinal tap, got myelin protein (I think), and I was hospitalized on the spot. The Penn hospital is a regional ceter for GBS, so my care was good. Did plasmaphoresis every other day for 10 days, which was really pleasant once they started using a blood warmer…like a warm bath. Started to come out of it after two weeks, and was moved to the rehab floor for a week. After three weeks in the hospital, I was better, could walk, could use my hands a bit, and I wanted to go home.
After being released, I slept a lot, but felt ok, although weak. School was not happening yet, and indeed I was told to take a year leave. In early October of that year the pain started. Mind-blowing pain. Shocks, bugs crawling under skin, bee stings inside my knees, and wrists that felt like a hot poker was being stuck through my thumbs up into my forearms. The pains and strange sensations would change rapidly, sometimes every five seconds, and so I could never negotiate them. They made me want to just check out, end it all, you know? (Evidently suicide from pain is high with GBS, and I understand why.) Opiates like codeine or hydrocodone just made me stupid and sleepy, and did nothing for the pain. I slept about 14 hours a day. Eventually I was put on Tegretol, which at high doses defiitely helped a lot, although I was completely useless for the first 6 months of it. Slept about 20 hours a day, and was dazed and confused when I was awake, but with time I got used to the drug.
The pain would come when I did anything physical, like drive or carry groceries. It ruled my life. Unlike muscle soreness from not being in shape and then working out, this pain really messed with my head, made me feel sad and trapped and tortured…like my very soul was in pain. After a year of this I dropped out of the PhD program entirely, since I was no better, but I did manage to finish a master’s thesis using voice-recognition software, since fine motor use was a death sentence of hurt. Somewhere in that time my wife left, since I guess I was too sick to deal with, or too different than I was before GBS, and I got divorced. In truth it was for the better, since it was not a healthy marriage in the first place, but at the time it was hard. The tegretol, which is also a mood stabilizer, I think helped in masking my real feelings about it, but those were still dark days.
I was unable to work much, trying to stop the financial bleeding by tutoring college chemistry for cash, sometimes while flat on my back on the couch. I dated a bit, even seriously, but nothing lasted, as I was just…well…not really me. I couldnt make plans because I never knew when the pain would show up. I did get brief visitations of my daughter, and would plan around the inevitable exhaustion and pain that would follow a visit, no matter how short.
Essentially, I lost about 3 years of my life. I got a faculty position at a local college teaching organic and physical chemistry, which made me very happy. Being a chemistry professor is all I have ever wanted, since high school. I dedicated every moment to building my shattered career and life. I was able to work hard and long, and for me this was pure luxury. I also was put on Remeron for the ongoing depression from not just GBS damage, but also the fact that when I got off of tegretol, which was acting as a strong mood stabilizer, suddenly the full reality of what I had gone through and was continuing to go through hit like a ton of bricks. Remeron helped a LOT, with few side effects (slight weight gain).
Since 1998 I have taught at many of the colleges i the Philly area, and finally in 2004 decided to finish that PhD, and so I am at Temple now doing just that.
I am a certified workaholic these days, but I love what I do. Moreover I love that I can actually work, and every day is a gift, and no one knows what tomorrow will bring. So while I can physically do it, I work hard. I work out now (Russian kettle bells strength training), suffer bad pain occasionally, mostly when my immune system is fighting something, but in general do well in life. Thank God.
I’m sure you will see me in other threads. Again, pleasure to find this group. Thank you all for being here!
June 29, 2006 at 9:18 pm
My daughter found the forum a few days after I got sick and the feedback and insight helped my family learn about GBS and in turn pass it on to me when I started to get better. It’s a great place and a good feeling to help others going through what we’ve been through.
AnonymousJune 30, 2006 at 9:00 pm
Glad you found our little “family”. I hope you find as much information and encouragement here as I have found.
I also went through the disease without guidance and with nobody else who had any idea what GBS is like or what it does. Fortunately, I had friends and family support. They made all the difference.
And now, having found this forum, I’ve learned so much and continue to do so. Hope you have the same experience.
July 5, 2006 at 11:28 am
I’m so glad you found this forum and thank you for sharing your story. I am approaching my 5 year hell-iversary and am thankful to be around to tell the tales of what I experienced. Unfortunately, I am on disability due to GBS and many other medical problems I encountered. My fatigue level is pretty high but I have learned to live with it. I was on Remeron for awhile also but no longer require any drugs for depression.
The folks here have enlightened me on more issues and topics than anything my neuro has ever been able to tell me. In the past, I have taken info from this site to my doc and she has since taken time to look at this site. She’s very impressed with our knowledge and insight!
We’re all here for each other to encourage and commiserate – which ever is needed! 🙂
AnonymousJuly 5, 2006 at 12:03 pm
Hi Kurt.You will always have someone here who knows what you are going through. Good luck working on that PhD.
I love your city. I was there last year. My cousin took me to South Street.:) Had a great time. I even went to a Phillies game. I hope to get back there soon.
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