It was a Year ago today.
AnonymousJanuary 14, 2011 at 9:26 am
This will be long, but it feels good to go through it. And that makes me BETTER.
It was a year ago yesterday that after a month of increasing numbness and loss of strength, that I was admitted to the Hospital, with a dx of GBS. It was a happy day. I had been to 5 doctors, had 3 MRI’s 2 CAT scans. I was told it was stress and anxiety, it was a possible blood clot after surgery, it was compressed and bulging disk, it might be MS, could be a tumor, and was met with a great many shrugs, looks of bafflement and some honest I have no ideas. The medical community was failing me. Now, back to the happy day.
I had an appointment with a neurologist and was being interviewed by his nurse. I told her my symptoms and she stated that she had heard of every one of my symptoms but never from the same person. The doctor came in had me do a few simple strength test, check my reflexes, stabbed me with pins and then told me that he thinks that I have GBS and that he would be admitting me to the hospital right then and there. A short wheelchair ride and presto I’m in a hospital gown, getting blood drawn, meeting all kinds of doctors, nurses, aids and therapist. During a break in the action I look at my wife and said what’s GBS. More shrugs. We asked a nurse, she pronounced it has it was spelled and shrugged. I was scheduled for a lumbar puncture at 11am, an EMG at 4pm. Let me tell you about the EMG, I was told by my doctor that it would feel like getting an electrical shock when you touch a light switch. I later explained to my wife that I was placed in Frankenstein’s lab and when lightning struck, the current when through by body and the lights of the hospital dimmed.
But I digress, The Doctor, come in at 5pm and tells me that GBS was confirmed and that I would be starting a course of IVIG for 5 days and that I would be better. Of course he didn’t say IVIG he said something that sounded like intervineus Immuneal goblins. I thank the doctor, smiled at my wife and said, “In 5 days I will be better, yeah.” By this time we had a laptop, found this site, and started our education on GBS. I didn’t do the research, my wife did so she knew that I wouldn’t be better in 5 days but I didn’t.
On Sunday day 3, I was totally depressed, I expected to be BETTER, I felt a little better but I wasn’t better. The low point of that day was I was taking a shower, sitting on a bench and having little control of my hands dropped the soap. (never, when in any kind if institution, drop the soap). I couldn’t feel by butt so I didn’t realize I fell off of the bench till I hit the floor. Now, everyone sprung into action. I had a covey of nurse and aids come rushing in to view my naked body, lying on the floor, (my room was right across from the nurse’s station, the door was open and all the staff and visitors were watching the action). I asked for help getting up but no they had to bring in this lift and hook me up to a harness and wheel me spread eagled to my bed. I asked if they would please close the door. I was placed back into bed and began to cry like a baby. Here I was in day three of the goblin IV and I wasn’t better. I had nurses come in to investigate, doctors come in to investigate and I think one of them was a lawyer. But I digress.
Day 4, I have a visit from a guy from PT, and I get walker training. Still need help getting to the bathroom but the walker allows me to get up and down off the toilet by myself and the door is closed while I take care of business.
Day six and I can go home. There was a debate between OT and PT but PT won and I did not have to go to a rehab center. My wife (my rock), would be home with me for a week or so before she had to go to work and friends and relative were just a phone call away if needed. When I was discharged my doctor told me that in three weeks I would be better. Again, I believed him. When I got home, I called my boss and told him I should be back to work in three weeks. Ha.
Now to conclude, Year one. I returned to work two hours per day in April and gradually moved to full time by August. I was feeling BETTER but not OK. I tried for several months working full time and was getting WORST. I am currently on Short Term Disability for up to six months. I could not take the pace at work that included 9 to 12 hrs per day 6 and sometimes 7 days per week. Since stopping work a month ago I again am BETTER. Whether or not I can take the pace required by my job is yet to be seen. At the moment I feel good, have some numbness in my feet, hands and face and require two good naps during the day. I still get stabbing pains every inch of my body that range from small pin pricks to large ice pick pricks. I have become a househusband ( a great job to have) and I am able to cook, clean, do laundry, shovel snow(my wife draws the line at 1.5 inches), go to the store and drive around town. I can play with my grandchildren and hug my wife (did I mention she is my rock). Life is good. It could be BETTER, but it is GOOD.
AnonymousJanuary 14, 2011 at 10:13 am
It was a year ago for me too well not eactly but close enough. I was hospitalized for 2 1/2 months and unable to talk or eat for 1 1/2 of that. It was a nightmare feeling so useless and helpless. I went in november of 09 and didnt get home until mid january of last year. I missed all the holidays and new years. I didnt have as much luck getting diagnosed so quickly as you and almost died in ICU and had to be put on a ventilator. I went through all the same test as you and also feel the lighting and pins and needles shocks throughout my body. I still have numbness in my feet and hands. Despite all of this, I have a positive attitude such as your self and I hope you will continue to get better and stronger. What has helped me is walking everyday. As soon as I left the wheel chair behind, I walked alot despite the pain. I rested alot but I also worked hard every day and now I’m running and playing basketball! Its a wierd kind of soreness I feel. It is a very deep and horrible pain, but I’m blessed to even feel pain…. I’ll take it each and everyday if it means I can be here for my daughter. My life is great right now and I’m working on improving everyday. Take care.
AnonymousJanuary 14, 2011 at 12:33 pm
I am so glad that you are taking the time off to rest. You need to do this. Your story is inspiring and Armando’s as well. How people can endure this and have a positive attitude is amazing! The human body can deal with a lot….
Good luck with your continued recovery and thanks for sharing your story with us again.
AnonymousJanuary 14, 2011 at 1:15 pm
I empathized, sympathized and was certainly able to relate to your experience(s). I’ll have to make this short as I’m taking a short (unauthorized) break at work. When I read the word “goblin” I thought I’d gone dyslexic. When I realized your spelling of the word was intention, I burst out laughing and probably startled a few co-workers. 😮
You sound very upbeat and thankful, grateful of everything you’re able to do. I’m so happy you had and still have a rock. Tell your wife I think she’s awesome.
Take care and continue to have a wonderful day!!!
January 14, 2011 at 3:09 pm
Atta’ boy Harry just keep the smiles going!
You were so great to call me when I was first at home after IVIG. We talked for what? An hour? It was great and it was like I had a brother in this.
You are an inspiration to keep trying and to find something to laugh about in the face of physical horror. I wanna be just like you!:)
Rock on Harry!
January 18, 2011 at 12:25 pm
You’ve been a big help to be since I was dx’d almost 4 months ago. Really made me feel like i was not alone in this and taught me about patience.
You’ve come a long way and have helped others along the way which is something to be proud of.
take care and keep healing
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