northernguitarguy
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August 31, 2010 at 9:14 am
[QUOTE=fairly_odd_mother]In an argument hubby made a comment that with complaining about this or that or even talking about GBS related issues, he sees me as a sick person, not an “ooo baby” person. Ouch. It took me a while to get over that hurt. I can understand, but connecting somehow or someway sure would be nice and I think it would do wonders for both of us.
With menopause on the way I feel as if I missed out on 4 years of intimacy dang it. This is one of the things I definitely want back. I keep my mouth shut about any issues unless they are really bad, make sure he knows I am interested, and even sharing a warm shower while holding each other close makes all the difference in the world. LOL and snuggling in the morning bad breath and messy hair and all…way not sexy, but I don’t care because love trumps sexy![/QUOTE]
Hey Lori. I tried putting myself your hubby’s shoes regarding his comment. Perhaps its not that he doesn’t find you sexy, but he might be afraid he could hurt you. For most men, fear is not the path to a sturdy erection. Sounds like you two are however finding a way to connect.:)
August 31, 2010 at 8:47 am[QUOTE=Linda M] However, after reading everything, I sure wish my state would legalize pot! Those that can get God’s natural remedy, should try! 😀
I wish everyone great success in managing the pain that many, many of us live with daily! And I am so thankful for those that don’t have to deal with the pain, they are blessed.:)[/QUOTE]
A overwhelming majority of Canadians wish your state and country would get over their dope prohibition hangover and normalize laws. Then our government might get some guts, stop spending millions (Americans spend BILLIONS, take that Tea Party!) of tax dollars on law enforcement and get serious about using [B][U]plants[/U][/B] to help relieve pain.
August 30, 2010 at 7:32 pmHere is an interesting link pertaining to this thread
[url]http://www.bbc.co.uk/news/health-11110798[/url]
August 29, 2010 at 9:12 am[QUOTE=Chrissy]I am so happy for you that Tom Petty rocked as expected! Because of you I went to another concert last nite at the zoo again – Buddy Guy, Al Green and BB King 😀 This time a girlfriend went with me and with my ‘gift of gab’ I found a very close parking spot. I got a bit braver this time and walked around with my cane in my area of people talking to them and did not fall down *yeah* Boy am I feeling it in my legs and feet today. Small price to pay for happiness for a few hours.
I am very grateful for the 2 summer concerts this year… it had been 4 years since I had been out to the zoo!
And its all because of you my fellow rocker 😉 Thank You[/QUOTE]
Hey Chrissy!
I say thanks for the kind words, but I’ll mention that it was YOU who got your butt down to the amphitheater and you are awesome for doing so.
Music is so powerful and seeing it performed live is how it is truly meant to be experienced. I hope you can all get out to enjoy some live music. It’s quite likely that your ears are GBS free and that’s all that’s needed to enjoy tunes.
I’ll leave you folks with some lyrics from one of my favourite bands Metric. This song knocks me out and could easily be a GBS anthem.
I tremble
They’re gonna eat me alive
If I stumble
They’re gonna eat me aliveCan you hear my heart beating like a hammer, beating like a hammer
Help, I’m alive, my heart keeps beating like a hammer
Hard to be soft, tough to be tender
Come take my pulse, the pace is on a runaway train
Help, I’m alive, my heart keeps beating like a hammer, beating like a hammerIf you’re still alive
My regrets are few.
If my life is mine,
what shouldn’t I do?
I get wherever I’m going,
I get whatever I need
while my bloods still flowing
and my heart still beats.Help, I’m alive, my heart keeps beating like a hammer
Hard to be soft, tough to be tender
Come take my pulse, the pace is on a runaway train
Help, I’m alive, my heart keeps beating like a hammer, beating like a hammerHelp, I’m alive, my heart keeps beating like a hammer.
August 27, 2010 at 10:02 amHi Lori
I hope you are feeling better today. Lotsa folks advising you to go after the ‘Addams Family’ here. I have been in a similar situation having to deal with crazy dangerous idiots, only I was in full health when it happened to me. Your bravery in taking these people to task in admirable, even though it must be scary.
I dunno what value it is to you, but if you need GBS support in the form of a talking buddy I would be happy to spend some time on the phone with you, as I am sure many of us here will do. Whatever, dont be afraid to rely on us for support.
Best to you and your kids
August 26, 2010 at 10:50 amTom Petty rocked! He went right through his whole vault of tunes, playing some great oldies-Breakdown!-mid-career-Free Fallin-and personal faves-Learning to Fly. Lisa and I had fun and it was a great anniversary celebration for us.
As for the GBS side of it we were very fortunate. We pulled right up to the arena after a grueling traffic battle in downtown Toronto. Found parking fast and cheaper than the gouging we expected. Our seats were on street level and close to the aisle and only three stairs up. It was perfect!:)
I’ll admit I’m a little sore today but the cost of the battle is cheap for the benefit of the victory.
Charge on GBS Family!
August 26, 2010 at 8:57 amAbsolutely kick her a**! Have the court hit her with everything! Anybody who beats up a patient recovering from GBS is potentially dangerous. She needs to be stopped before she hurts someone else.
I am feeling for you right now. When I got GBS one thing that went through my mind was protecting myself or my family. You have lived through one of my worst fears!
Seriously, she needs to understand what a coward she is. I dont think you should just let this go.
I hope you can get the stress under control.
August 25, 2010 at 3:05 pmhey Armando
I get what you are saying and hear you my GBS brother. I love how you said that the temple is turned inside out. That’s how I describe how my hands and midriff area but I add that they were dragged along the ground.
You being back at work is amazing, kudos. And friggin’ basketball?? I tried to hop the other day and almost fell over! You rock Dude!
Everybody who doesn’t get it can (bleep!) and I would take no prisoners.
I have found that listening to heavy metal music has been a great help. It often reflected how I was feeling and gave me a place to privately vent my frustrations. THe i-pod has been a life saver. I’m so glad that my hearing wasn’t affected by GBS and that my headaches were minor.
Dude, you are rocking your way out of ssomething that healthy people just cannot comprehend. They are going about their day as much as we might be if we didn’t have GBS.
Personally, I am going to take a lesson about life out of all this. I cannot believe some the stupid things that used to irk me. This freakin’ syndrome will be a blessing in disguise if it sweeps away my former (at times) a**hole self. I hope that I will never be the same as I was in ways.
With regards to my body, I am going to come back better than ever or die trying.
peace to my GBS family
August 25, 2010 at 7:55 am[QUOTE=Hedley LaMarr]Here is my experience with Acupuncture performed by an experienced Chinese doctor: I had 2 sessions and the post treatment was painful for two days after in each instance. It was as if he had stirred up coals on a fire. I was his first GBS patient. He reports having success with stroke patients. By mutual agreement we stopped treatment. The needles were placed in both legs from the knees down which is the area that has not recovered yet. I tried, but the resulting pain was not worth further treatment. This is just MY experience.[/QUOTE]
Hi Hedley
I got the same recommendation from my PT. Acupuncture will not grow myelin. I have been getting some benefit from massage therapy. All I can say is that it feels good and loosens up all my sore muscles. It has been worth every penny.
August 25, 2010 at 7:52 am[QUOTE=Chrissy]By the grace of God and a few good samaratins… I made it to see [B]Heart[/B] at our Zoo Amiphitheatre last Friday night. Temps were above 100 and I was very scared as I headed out. They had moved the handicapp parking to way far away and with the heat, I almost went back to my car to leave. But then a golf cart came by and gave me a ride almost to my seating area. And the same happened when I left – got a ride right to my car. It was a blast!!! It was disappointing that I could no longer make it toward the stage like I used to… but I was so happy to be hearing the music I was. Ann Wilson so totally still has her voice.
People looked at me strange as I walked with my cane to get a burger. Again, I was so grateful to even be there I didn’t care.
Live music has always been healing to my soul. I used to love to dance the whole time and that is frustrating as I can barely ‘chair dance’.
Rock On!!![/QUOTE]
Chrissy that is so cool! I saw Heart about 25 yrs ago and they put on a great show. Did they RAWK Barracuda? That has one of the best guitar riffs of all time!
The best part is that you said (bleep!) it I’m going. I hope this gave you a boost and that you are at live shows in the future. I’m even thinking about getting out to a bar for some live entertainment. I’m off tonight to see Tom Petty (even the losers get lucky sometimes:) ).
Let’s all rock GBS/CIDP outta here!
August 25, 2010 at 7:43 am[QUOTE=jasonscamera]I do find that if I do my PT early in the morning I do not fall asleep as often as if I do not do my pt early in the morning.
Today was a bad day emotionaly so the fatigue was stronger on me as well. Without getting emotional about it now, it all comes down to again I just want my life back. Please someone give me my life back[/QUOTE]
I hear ya jason! I have days when I feel very emotional too. Have you had any progress yet? I hope so. If you are on to PT then I think that you must be. Please count every step as a giant leap; sometimes little steps are all we get.
I’m sending you my wishes for a better day today:)
August 25, 2010 at 7:36 amHello jojo
Things sound really tough. Working through GBS/CIDP must be so stressful, but I hope that it can count as physio. I am counting everything I do as therapy, why not? In OT they had me putting nuts and bolts together. I’d rather count making coffee as exercise. I send my hopes and wishes that you will remain strong and will have some better days ahead.
gentle hugs
August 24, 2010 at 8:58 amI agree with all the posts. However, i found at physio that my exercises were getting too easy as i healed. I started to push myself a bit harder, adding more weight, reps, time, etc. It hasn’t killed me (yet).
The benefits have been really good. I feel mentally like I am working at a better pace and I have been sleeping wonderfully at night.
I understand this is what works for me and that your case is different. I just found that my mental state was dictating how hard I could work rather than my body. Once I realized I was capable of more I went for it and I feel that I am doing better this way.
I hope you can all find your strength today and forever
August 24, 2010 at 8:50 amThanks Pam!
My neurologist. doctor and physio therapist also all mentioned to be ready for small jumps in progress. Seems those nerves kick-in as one small section of myelin will heal making the nerve work properly again, like an electrical wire…….whatever, I’ll take it!
best wishes for a pleasant day!
August 22, 2010 at 12:02 am[QUOTE=limekat]When I was my sickest I listened to classical and piano on “low”. Now I can’t stand all those beautiful CD’s I used to because I played them when I was so ill.
Sometimes a real old rocker like Tom Petty or REM will come on as I’m scanning stations in the car and I”ll blast it full throttle.[/QUOTE]
Right on limekat! I’m going to see Tom Petty in Toronto on Wednesday. The waiting is the hardest part;) I am so looking forward to this show. I was ready to give up the tix but now refuse to let GBS take this. We reserved parking right in the arena parking. Crosby, Stills and nash are opening. This is good as it’s getting to the point where I’m no fun anymore;)
Alright, I gotta stop. Keep rocking!
