Meanwhile, down in New Orleans…..
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August 24, 2006 at 10:20 pm
After being active on the forum for awhile, I have not posted but a few times since the forum came back up and running.
For those of you who do not know me…
Male, 50, school band director & avid model railroader
I stayed for Katrina. I live about 6 miles to the west of the 17th street canal that broke but I live on high ground near the river.
Onset was July 2004 / 19 days ICU / 28 days acute care / 21 days in-patient rehab / stopped living twice while in ICU and was brought back / 5 day coma ( and I remember EVERYTHING from my trip to the otherside) trached and vented ……the whole 9 yardsMy neuro stated that in over 300 cases of GBS that he had treated, I was the second to worst that lived but by far the best recovery.
Now, to catch up ( for anyone who cares )
[B]CRAMPS[/B]…………I was having trouble with the really bad ones again and one of the guys thats a coach at school told me to try dill pickle juice !
WHAT ? dill pickle juice ? Thats right and it works for me. Not a whole lot, just about three big gulps and within 10-15 minutes, no feelings of cramps at all.
[B]Health [/B]- Well, considering that they didn’t expect me to walk for at least 6 months and I was back at work in less than 3, I’ve been doing pretty good with my positive attitude. The fatigue and pain has caught up with me. One of my MD’s told me today that it’s time for me to look into disability so that I could at least cut back to working part time. I have appointments with the GP and the Nuero in the next two weeks to get the ball rolling. One of the things that has become clear, finally, is the difference between depression, depression pain and fatigue.
All too often we are all dealing with depression along with the fatigue and pain. They get so jumbled up togeather that it’s hard to tell whats what. I switched from wellbrutrin to Cymbalta and have nothing but positive things to say about it. There is a marked difference in the relief of the moderate to severe “general” pain cause by depression so much so that the pain in my legs and knees seems 10 times worse. The other thing is that I can truly feel the difference between what was the general pain of depression ( much like severe aches of the flu) and the feelings of fatigue. They are so similar that it’s easy to get them confused.
I have weened myself off of most pain meds including neurotin but still use the percocets 3 or 4 times a day, Celebrex twice a day and the Cymbalta.
I have gone from sleeping 10 – 12 hours at night and a 2 hour nap in the afternoon to sleeping 8-9 hours at night and a 1 hour nap in the afternoon with the help of ambian.
[B]Changing an outlook[/B]
While I did everything I could to try and live a normal life and not look back at GBS ( which was the attitude I took in the hospital and very much the reason for my recovery ) GBS has shown up in a completly different manner.
I have reached a point, (which my shrink pointed out), that it’s time for me to face a reality. I have delt with depression for a long period of my life well before GBS and understand the physical problems that are a result of depression. At this point, the change has been made that it’s my physical problems affecting me mentally. For the most part, the chemical imbalances in my brain are corrected, but my constant pushing myself physically, trying to be “normal’ is taking it’s toll on my mental balance. Took me a few times to think it through until it was perfectly clear.
When I would think of disability, all I could hear was my fathers voice in the back of my head bitching about the ” good for nothing, lazy b*****ds living off of other hard working people”. I kept away from thinking about disability for not only the haunting voice of my dead father, but because I felt like it was giving up or giving in to GBS. I realize now that I felt it to be a morality issue to even think of it but now that my doctor stated that I can’t go on pushing myself beyond my limits, it seems ok. ( does that make sense to anyone besides me ? )
[B]New Orleans[/B]
If you have not been here you would not believe the problems. Many people outside of the area do not understand what took place during the storm much less the problems now. I will write a seperate post about this later.
The crime is much worse then is being reported. The majority of the city is in a mental meltdown and yet we lost at least 79% of the mental health doctors. Large sections of the city still don’t have water or power so people are camping out in their gutted houses. Few people have seen any of the billions of dollars that are on the way. Much money has been spent on overpaid FEMA contractors, the Corps of Engineers have not only “not” finished the temporary fixes to the levees, the temporary pumps that have been 2 months late in being installed have just been found to be defective.
The mayor is a racist moron and the governor is more clueless than Edith Bunker. If the federal goverment does not send in someone to take over and do it soon, New Orleans will be the largest ghost town in America.
The latest is that the idiot mayor will be on 60 minutes this Sunday making smart assed remarks about 9 / 11. When asked about how slow the clean up is going, he makes a remark that it’s been 5 years since 9-11 and New York can’t fix a hole in the ground. What a jackass.
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August 24, 2006 at 11:52 pm
Hi Mike,
I am 48 years old and had GBS in Dec of 04. I was totally paralyzed but not ventilated. I saw my doctor this week and we discussed how far I have come but my family can’t accept reality that I’m not going to get full recovery. I’m a substitute teacher and I was working full time year round before my GBS. I only work 2-3 days a week now and my husband wants more. I told him that he has to accept reality that I can’t work full time anymore. I still take naps 1-2 hours a day and sleep 9-11 hours. I’m still experiencing tingling in my feet which my doctor says probably won’t get better and I have no ankle reflexes. I can walk very well without stumbling or tripping. I have come quite a long ways and so have you when you think about it. We are to be proud of ourselves. I wish I had the energy I once had with working full time and taking power naps but I don’t and I accept it. I just wish my family would. Thanks for keeping in touch with us.
Caroline
Michigan -
August 25, 2006 at 4:27 am
Bless you, Mike.
Regards,
Marge -
August 25, 2006 at 6:32 am
Thanks for share your life with us, both Mike and Caroline. Both of you have insight that most is a benefit to me. Bless each of you.
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August 25, 2006 at 8:06 am
All I can say is…..Amen and thanks for your post….I am struggling with the “dissability” issue as we type……..
Stephen
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August 25, 2006 at 8:26 am
Hello Mike,
It’s good to hear from you again and to hear about your city. We have to learn to get past the way other people, and that includes family, see us. Even though it can hurt me deeply, my feelings have to be “that’s their problem”. I think we are in “the eye of the beholder”.People can be strong when they work together and hopefully, New Orleans can rise from it’s destruction and become a beautiful city again.
From my heart, -
August 25, 2006 at 8:45 am
Hi Mike, been hoping we would hear from you soon. glad you are doing ok. you have to do what is best for you. you should write a letter to the world for some help for N’Orleans, you are a person of many, inspiring words! keep up your great attitude, man! take care.
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August 25, 2006 at 9:19 am
Mike,
I thank you for your honesty in your experience with not only living through a devasting illness like GBS, but living through the devasting Katrina and its aftermath. You are truly a “survivor” in every sense of the word. I have to say that I am both encouraged and disturbed by your post.
As for your GBS recovery process I am encouraged. My friend Peter is now on day 15 of ICU with GBS. He is 17 yrs old and is my Pastor’s son. We are encouraged daily with the small things like “he moved his thumbs today”. He is suffering with depression, turning to the Lord during these times, but still with the physical hurdles to overcome, depression is a significant factor in his daily life in the ICU. I am encouraged with the facts of your GBS case…you weren’t expected to walk for 6m, but you walked and were back to work in 3! Your sleeping less and weaned yourself off of some pretty heavy duty pain medication! Mentally you are overcoming pain, fatigue, and depression 3 devasting emotional hurdles that take some a life time to get a grip on. You are a GBS hero! I consider your strength in overcoming these issues in your life as a definition of heroisim in the true sense of the word. Congratulations and keep up the good fight!
As for your recovery from Katrina, it is a sad, sad thing. I thank you for your honesty and eye opening description of the lack of effort and genuine lack of humility our elected leaders have portrayed thus far. I am truly sorry that you have to deal with the incompidence of your city/state leaders and the physical annoyances of lack of construction. It is just not fair. Keep your head up, like they say “what doesn’t kill you, makes you stronger”.
God bless you and relieve your physical and emotional pain,
Nancy -
August 25, 2006 at 10:35 am
Welcome back Mike,
So good to hear from you again.
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August 25, 2006 at 12:00 pm
[COLOR=”Blue”]Mike, I am inspired by your attitude and story. I understand the struggle you had when thinking about disability. I had to give up a 30 year nursing career and still struggle with the decision to let others help me instead of me helping others. I think it also has something to do with the strong work ethic we have. It is time to take care of yourself. You have come so far. As far as New Orleans, what a deplorable situation. Who received the millions of dollars your fellow citizens donated to help the people in so much need? It angers me. This tragedy is so big I still can’t comprehend the magnitude of it’s consequences. God bless you and your family. You’re in my prayers, as are all citizens of New Orleans……….Vicki[/COLOR]
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August 25, 2006 at 3:41 pm
[FONT=Georgia][SIZE=3][COLOR=darkorchid]Hey, T.O.M…[/COLOR][/SIZE][/FONT]
[FONT=Georgia][SIZE=3][COLOR=#9932cc]Since you came on the Forum a few years ago, I’ve watched you work through your days. You have given your job, your all. The question is: When is enough….enough. Damn tough question to ask yourself, Mike. And even tougher to face the answer to it honestly.[/COLOR][/SIZE][/FONT]
[FONT=Georgia][SIZE=3][COLOR=#9932cc]Our generation was brought up with strong work ethics, hearing that if *one* was on disability, *one* was a loser. A low-life. Working the system. And, ya’ know what? I bought into it. I believed it. That is, until GBS when I could no longer work & needed disability for assistance so I could live.[/COLOR][/SIZE][/FONT]
[FONT=Georgia][SIZE=3][COLOR=#9932cc]Your decision to not work was EXTREMELY difficult to make. I feel (physically, mentally & emotionally, again) what you went thru to reach your decision. BTW, what you wrote makes perfect sense to me. [/COLOR][/SIZE][/FONT]
[FONT=Georgia][SIZE=3][COLOR=#9932cc]And regarding your mayor, may *someone* in N’Awlins put a curse on him that he loses everything, (family, friends, money, position) and lives like those who have nothing, because he will have nothing. [/COLOR][/SIZE][/FONT]
[FONT=Georgia][SIZE=3][COLOR=#9932cc]I would imagine everyone in your city has considered tying him up by his testicles & hanging him on public display in the worse part of the destruction in the city.[/COLOR][/SIZE][/FONT]
[FONT=Georgia][SIZE=3][COLOR=#9932cc]How DARE those in power by-pass what is going on! And that goes up the chain of command to ‘the prez’. They are turning their backs. For shame, all elected officials. The people in the USA want to help your citizens, but you (officials) won’t make sure the help we give gets to them (those suffering). [/COLOR][/SIZE][/FONT][FONT=Georgia][SIZE=3][COLOR=#9932cc]Does it feel to anyone else, other than me, as though the USA is going to hell in a hand basket? [/COLOR][/SIZE][/FONT]
[FONT=Georgia][SIZE=3][COLOR=#9932cc][/COLOR][/SIZE][/FONT]
[FONT=Georgia][SIZE=3][COLOR=#9932cc]Humming the tune to “Welcome Back, Kotter” and wishing you well![/COLOR][/SIZE][/FONT][FONT=Georgia][SIZE=3][COLOR=#9932cc]PS: Damn, I’m impressed that you are off your Neurontin! I could not imagine living in the Deep South without Neurontin!!![/COLOR][/SIZE][/FONT]
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August 25, 2006 at 3:46 pm
Mike,
Welcome back – we missed you.
So sorry to hear what you are going through in New Orleans. Where is all of the money donated by the rest of us concerned citizens that was collected by charities for the people of New Orleans? Sadly, probably stolen.
Yes, it is a really difficult step to acknowledge that we have a handicap and can’t do the things we have grown to expect of ourselves. I also have that built-in work ethic thing. Sometimes it is a handicap of it’s own! Don’t be ashamed to ask for help when you need it. Yes, there are many who are willing to take advantage when they don’t need it, but you know in your heart that you are not one of them.
Keep that good attitude – we all need some of that!
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August 25, 2006 at 4:43 pm
Mike,
It is good to see you back again!
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August 25, 2006 at 4:46 pm
Hi Mike,
Nice to hear from you agin, and that you are surviving ok. As I offered you in the beginning of all that mess down there, my offer still stands. Need anything, and I could possably help with that, don’t hesitate to ask.
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August 25, 2006 at 7:51 pm
Mike,
It’s so good to hear from you, we sure missed you around here. Take care of yourself.
Jerimy
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