help me
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May 7, 2006 at 3:30 pm
sorry had to resign up, maybe just me
help me……….forgive me but i am in bad bad shape. ineed to know if anyone has or seen trhis. read my story to know where i was a month ago.
i cannot leave because no ramp at my house. been telling people since december i had to have one. 2 times monthly i should get shots and stuff for bad blood and none since december. i just spiraled way down in the past wedk. no one got me pain pills and they help me live right. i am back to barley able to move, haedcley any feeling loss like before with the GBS. i have a hard time thinking, my lungs and heart has stopped for 10 seconds 3 times in the past 2 days. thie fellings lost with GBS the first time are still here now. anyone ever had a relappose like this with GBS or is it more one of my other problems.
i am waiting till thy put my ramp up to go sed a neuro. wont do the ER ccause them assholes don’t know nuthing much evef. and because no ramp i would end up at another nursing home and people will die this time or screwing me…………sorrty passing out bye
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May 7, 2006 at 3:38 pm
Dear OneEyeGeo:
If you think GBS is recurring, then phone ER immediately. Even if you are wrong, a little embarassment isn’t worth the risk of a whole lot of nerve damage. Get an ambulance to your house right now. You may not have enough time to wait for a ramp.
Take care of yourself,
Lee
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May 7, 2006 at 3:40 pm
Listen to Lee he’s right. Hope you are OK
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May 7, 2006 at 5:59 pm
George,
Sounds like you are having a ramp put in sometime by someone, but dont know when. If this is not the case, let me know. Our church, at certain times of the year, go out and do things like building ramps (just done one recently). I could try find our from our pastor if there is a church or organization in your area that could help you out with this. I’m sorry, when I mailed that last letter to you (hope you got it), I didnt keep your address, you will have to send it again.
I am so sorry you are going through this, I wish there was something we could do for you, Glad you are able to communicate with all of us again. -
May 7, 2006 at 6:37 pm
Dear OneEye Geo
Are you serious? You’ve not pursued help because you want/need a ramp?
You don’t need a ramp, you need help. So the ER people seem like ***holes – so what? They may need you to train them. You, quite obviously, need intervention and help – go get it. Do not stand on ceremony.
You need shots and stuff for bad blood twice a month but haven’t received it since December. And you feel bad. Not really surprising.
“… People will die” Does it have to be you? So long as you refuse to compromise, you will change nothing. Hard, but true. You need help, no matter the agro, go and get it. Because if you don’t, you will change nothing for those who will come after you. It’s a bitter pill, but it lies in your hands.
The idea of your dying because people did not help in the right way, at the right time, might seem like a good idea – but unfortunately it won’t work. Because you might know it – biut they don’t! That is a bitch, but it still won’t work.
If you really, truely, want to change things for yourself and for others, get help – now. Because the only way you are going to make medical staff stand up and go ‘Phew! That was close! We have to change our ideas!” is by being the person, the patient, who makes them do that.
I know that that is a pain in the butt (to say the least) but what other way will actually make a difference?
Dying in your house because you haven’t got a ramp is actually a waste of your precious time and it is down to you. Someone, somewhere, is probably supposed to supply a ramp. And they haven’t. You would rather die than change the scenario? What a waste. Do you want to make a point or do you want to make a difference? It’s your call.
I know that going through ER is a pain in the butt. Yet how else are you going to play the system in oder to change it? It takes nerve, it take courage and it takes patience.
Will you please get treatment and make a difference.
God bless
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May 7, 2006 at 6:43 pm
I suspect you are having more then just GBS problems. Please call 911, you are playing “Russian Roulette” with your life. Don’t wait, time is of the essence.
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May 8, 2006 at 11:16 am
GEORGE,
I hope you listened to everyone and called 911, it doesn’t matter that you don’t want to do it, it doesn’t matter that they are ass**xx##’s, you HAVE to do it.When you’re able to post again, would you tell us where you are! Like Ali said, we’ll find someone in your area who can put that ramp up, we’ll try to find a member who lives in your area. Our members stretch out across the USA.
From my heart,
Liz -
May 8, 2006 at 4:52 pm
[COLOR=red]please swallow your F’n pride and get help. I am a stubborn pain in the ass too, but if you need it take/get it. Good luck.[/COLOR]
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May 8, 2006 at 8:12 pm
George I forget where you live but if you let us know I bet between all of us we could come up with a way to get it done sooner for you. Here in my area there is a group of carpenters/builders etc that volunteer for a group called Neighborhood Senior Services, they install ramps etc for free, donating their time and materials donated from places like Home Depot and Lowes. Maybe there is something like that available to you.
Jerimy
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May 8, 2006 at 9:17 pm
Geo, the responses might seem harsh to you but when you are so low in a pit of despair like this, sometimes a kick in the butt is needed to motivate you to care about your own life.
WE care about you and want you to have your basic needs cared for! But we are here and you are there so you will have to be an advocate for yourself. I know, when you are exhausted and depressed, that can seem like an insurmountable obstacle! But you have it within you, I know you do. 🙂
Where are you located??? Some of us may be able to contact volunteer organizations in your area to help you.
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May 9, 2006 at 1:44 am
George is located near Cleveland, OH.
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May 9, 2006 at 1:36 pm
Hello all,
Thank you for the answers. I ended up having a stroke again, the 3rd one now. I will be going to see the Neuro that knows about GBS and has researched a few other items about me too. When I originally wrote my stupid self was having the stroke at the time.
It is a smaller stroke, able to think and still give correct answers just need to take my time. Like the Nero says it does not affect my GBS directly, will be harder on therapy because the stroke has slightly affected the muscles and you get tired even faster so everything has to slow down.
What I was saying was all messed up so yes I would have been stupid not to go for the reasons listed. The ramp is going in soon, and no it wont keep me from going to the ER if not in. The shots I will start getting, they raise my blood count back to normal giving me more strength. I could not leave my house because I had pneumonia cells left over and that had did me in extremely bad before. All the doctors agreed that if all possible do not go out in the cold.
Sorry have to go my Nero is calling in a few minuets, will give more later and THAN YOU all so very much.
George
[email]oneeyegeo@earthlink.net[/email] -
May 9, 2006 at 2:03 pm
George.
I am sorry to hear about your strokes. Do take care of yourself and let us know if there is anything at all we can do to help.
Jerimy
PS-Going to be in Cleveland this weekend Fri-Sun for a GBS Liason meeting where exactly are you located?? Email me if that is better [email]jerimyschilz@hotmail.com[/email] and let me know, perhaps I could stop by and say hi if you wanted.
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May 9, 2006 at 2:31 pm
Dear George:
It is good to hear you only had a mild stroke. We were all worried about you. Please take care of yourself.
Lee
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May 9, 2006 at 3:11 pm
Hi,
Jerimy If you want to stop by okay. The nurse was here and between her and doctors getting things in order, having appointments made for all the special testing. Will be leaving to go to them but no way to come back in. I have been unable to find a time on the ramp if at all now, so anyone that has info I will have the first come. Do not have a much to offer but can do AutoCAD drawings. Any help would be greatly appreciated.
George Kinsner
6401 Emory Dr.
Brook Park, Ohio 44142
216.265.8416 (leave message and #)Done some testing and this stroke was small thankfully, I.Q. same # as before, all body test (BP, breathing, heart, etcetera) came out as before. The only two problems are a little weaker in the legs, more than from the GBS and have to slow down, can’t go all day and night. Now have to check the nerves with tests, see what’s been going on over the winter.
Yes my stupid a%% got lucky this time so hopefully I will be able to help others some how.
So again [B][U][SIZE=”5″]THANK YOU ALL[/SIZE][/U][/B] and you truly have helped me.
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May 9, 2006 at 3:13 pm
Hi George,
Sorry to hear about your stroke. I knew it had to be another issue other then the GBS, it just didn’t sound right. Next time don’t post, just get to the ER, ASAP please listen to that plea from me. 🙂 Good to have you back.
Take care of yourself.
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May 9, 2006 at 3:41 pm
George – just listen to all the smart caring folks talking to you (or inthis case typing to you) and when the forum evens out and get back to normal we will have to meet at the tavern and I will buy you……is Jack Daniels you prefer?
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May 9, 2006 at 4:13 pm
Hey…………….nope try Wild Turkey, 100+ proof and easy sipping thanks and can’t wait!!!!!!!!!!!!!!!!!!!!!:D 😀 😀
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May 9, 2006 at 4:16 pm
Make you a deal…a bottle of Wild Turkey every time you take good care of yourself (ER, making house more accessible, etc.).
Regards,
Marge -
May 9, 2006 at 5:15 pm
George,
I will be in touch before I fly down there this Friday. Perhaps me and a few others can come by and visit for a bit. Take good care of yourself, we all care about you a great deal.
Jerimy
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May 10, 2006 at 8:53 am
Hi George,
So glad you are back with us and you’re now okay. If you have any problem getting that ramp up, post again, and we, the members, will work together and find a way to get it done.
I’m going to email Morrada and tell him to open the TAVERN, so stop in.
We now have a location and your email, it makes us feel so helpless when you need help and we have no contact.
Liz -
June 26, 2006 at 4:48 pm
Hey all,
I just wanted to let you know whats going on. Sorry if this is not in order, but no energy left have to do over days. Things are almost over, cant stand, no energy, can’t even read the forum and my leg is leaking 6-8 diapers a day (will explain down) and no pain pills now.
I called the University Hospitals neurological department to see if they knew of any neuros that know GBS very well and take medicare. They said they do, I explained what happen and they did not understand because in ER they do send them. Anyway they made an appointment for me in 4 days. Still no ramp so called Donald Martins, knowing that trips 1 way are $275.00 plus $7.50 a mile, most are the same. I told them I needed my wheelchair to get off in at docs office, they said I could only get off on a hospital bed f*%k. I tried others but no luck, that black cloud over me just keeps getting bigger, be happy for the end, had to cancel the appoint. cause no docs room “beds” allowed.
A few days later the VNA nurse found a injury specialist to come look at me. She flipped out and said st. Vincent Charity Hosp. had a unit called Kindred specialty that did wound care, pain management, and many others and could keep me for 28 days. They have some relation with University so they said they could get the neruo. I said okay but take 4 days to pack get paper work and things in order.
They kept calling saying they were worried and cared very much. Talk to others who use different parts and liked it. Turned out to be the worst place ever. Got there they kept me on the bed for hours. Explained to them that I can not lay for more than half hour before sever Charlie horses start, they did and bit my lip and tongue cause no pain meds.
Before going explained I need meds, prefer percocet every 4 hours, not as needed and maybe a small 24 hour oxycotton?. I also said I need liquid at all times cause kidneys down to 30%. I had to have neruo that is very good with GBS or else anything fixed would come back and that is the only way to fix the leg.
The leg was fractured very bad, still wish they cut it off. Now has celulitis (?) which is because no movement or exercise it swelled like the other but the veins are destroyed and skin super thin DUH the GBS is making me weaker so fix that and I get strength back and exercise and reduce or remove the ceulittes.
After the leg crap I got in the wheelchair, always in now, and put some wraps on the legs cause they fought me and even what university found to and said it was infected. I told them just to check fluid but no. I fought about the pain meds and the doc said okay, yea. I got my prcocet and hours later (6 cant remember little shit like time) after pain built up had to ask for more, nurses said it was written PRN, only when asked for. Asked to see the doc but told have to wait to next day. Asked for pen, lost mine, to keep time but no luck. The next day told the doc about what we agreed on but would not do it.
To make quick, hah, stayed there 5 days fighting with the heads about the GBS, even tried to hook up laptop but never had the phone close to use except last day, wanted the to get a hold of GBSFI and ask ?’s on the forum even on their own, no luck. Never could get water, never got help cleaning and room so small with other person had no room to move my chair. Had nurses changing dressings with no script on how or what to do so they did what they felt, bad stuff, never listen to me. I had a night black woman yell at me for peeing on the floor again. // mind you every time I hit the call button nothing ever came // called once because roommate knocked it over while sleeping. My table was next to his feet no rioom they were only ment for people in beds. When she started wiping and calling me names I called her the N word, sorry, and that I told her twice before I need a cloth becase my legs leak so much. Never got cloth or seen anyone till next morning, what a flood.
And why I am not religious, they come on every morning and say they pray for us and do all to help. What I have horns or killed Jesus? I think its great if people enjoy their beliefs, does not bother me but all my life bad bad luck and love so sorry if I cant. Look at the way I was not treated.
Had talks every day with docs to try and change things and get neuro but no changes, except the one day they wanted to start me on a pain med that is bad for the kidneys and makes me loopy (what they wanted probabl) I told them I would leave unless things changed. Also they wanted to start me on kidney dialysis, been hard but kept it at % for 6 years now, yea no liquid drops it. The next day I deciced to leave, another Martin high ambulance bill, had to fight but got paper work.
NOW
No help from VNA, not their fault, no pain meds, hardly eat, drink enough, no shower or help cleaning, fight to get on toilet now. Wish I had the double barrel sawed off, oh yea, but not me trying to die on a trike.
What I am going to do after much figuring. My doc Hussain is great, had for 7 years now and is a kidney doc but goes out of the way to help. Unfortunatly he works at Southwest, bad uck their remember got GBS they never found for 15 days till sent to Metro. Well according to medicare them and metro are the top of line. I know people there and the doc is held high so nothing to lose. I did not try them first because the neuros do not know GBS. I figure if I can get some strength back I can visit the neuros and do test after back home. The only thing stopping me is if no ramp why bother cant get to them. Working on a paper to email many, another day, doing both so that one read good and clear.
If I can do this I will let you know if you do not hear from me you know my body gave up, if so thanks all for past words and info. HOPE ALL HAVE A GOOD LIFE WITH GOOD HEALTH, LUCK, LOVE AND HAPPINESS.
GEO
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June 26, 2006 at 9:17 pm
George,
I’m sorry it’s been so rough for you there. I hope things start improving for you soon.
Love,
Shannon
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June 26, 2006 at 10:46 pm
I’m new to this group. I was looking for help on another topic. It seems to me that you need immediate help. Call 911 NOW!!!! I’m sure there is a church in your area that has a youth group that will come and build a ramp, but for your sake, get help immediately, or you won’t need the ramp.
When you feel better, call the local Methodist church and ask about the UM Army. It’s a youth group that does work like this for free.I came onto the site to look for affordable alternatives to Lyrica. I have been on it for 4 months, and it works. The insurance company was charging me $24 a month. Last month, they went up to $54. I can’t afford that. I am paying $102 for a 3 month supply of Topamax to control migraines. I was using it first, and it had no effect on the pinched nerve in my back. I am going off Topamax when I run out. I can’t afford this one either, and there is no alternative medication. I guess I’ll keep using Fluid Joint and pray a lot. Even with insurance, I can’t afford the meds that help. Does anyone know a safe alternative that works on pinched nerves?
Also, just to give all those who have taken Actonel, Fossamel, and all those meds in that class a heads up. If you ever have to have a tooth extraction, the oral surgeons are now learning that these meds stay in your body, and your jaw bone can become infected and die. A so-called simple extraction can also result in death. I am on my way to the U of T oral surgery center-my 4th and final dental center-to try to get half a tooth pulled. I’m beginning to think it’s safer not to take medicine.
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June 26, 2006 at 11:09 pm
Friend George ~ I am so sorry for your pain and anguish. Please keep calling the churches, youth centers, helpline in your area until some one can hear your need. I will keep you in my prayer thoughts. Keep our GBS family informed.
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June 27, 2006 at 6:35 am
George,
Something has to be done with your situation. Is your sister there at all to help you out at the moment? I think we all feel so helpless and just dont know what to do.
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June 27, 2006 at 9:03 am
Deane,
The affordable alternative to Lyrica would be Neurontin, or the generic of Neurontin which is Gabapentin. Lyrica is so expensive because it is a relatively new drug. Many of us take Neurontin or Gabapentin with good results. Take care and good luck.
Jerimy
[quote=deane]I’m new to this group. I was looking for help on another topic. It seems to me that you need immediate help. Call 911 NOW!!!! I’m sure there is a church in your area that has a youth group that will come and build a ramp, but for your sake, get help immediately, or you won’t need the ramp.
When you feel better, call the local Methodist church and ask about the UM Army. It’s a youth group that does work like this for free.I came onto the site to look for affordable alternatives to Lyrica. I have been on it for 4 months, and it works. The insurance company was charging me $24 a month. Last month, they went up to $54. I can’t afford that. I am paying $102 for a 3 month supply of Topamax to control migraines. I was using it first, and it had no effect on the pinched nerve in my back. I am going off Topamax when I run out. I can’t afford this one either, and there is no alternative medication. I guess I’ll keep using Fluid Joint and pray a lot. Even with insurance, I can’t afford the meds that help. Does anyone know a safe alternative that works on pinched nerves?
Also, just to give all those who have taken Actonel, Fossamel, and all those meds in that class a heads up. If you ever have to have a tooth extraction, the oral surgeons are now learning that these meds stay in your body, and your jaw bone can become infected and die. A so-called simple extraction can also result in death. I am on my way to the U of T oral surgery center-my 4th and final dental center-to try to get half a tooth pulled. I’m beginning to think it’s safer not to take medicine.[/quote]
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June 29, 2006 at 12:56 am
Agreed that the medical attention is needed immediately to sort out the symptoms, and …
an advocate is needed immediately to help mediate the struggles you are having. One option would be to contact Adult Protective Services (in the government pages of your telephone book). Tell them what you wrote about your situation here, and ask for a case worker immediately. The case worker can help coordinate support services and ramp you need. They may also agree that a medical assessment and/or treatment is prudent at a local hospital, but they have resources they can hook you up with quickly, given your circumstances.
The Elks men’s organization has a primary outreach objective of helping the disabled. Someone could contact the nearest lodge to you and ask if they would consider building the ramp. Other organizations such as Scouts also might help.
If you have a friend who can be an advocate for you by being with you for doctor appointments and other assessments, perhaps you will be able to negotiate other options other than a nursing home should hospital care be indicated at this time.
The Independent Living Centers nationwide have additional resources for disabled people, and they can help you understand how to streamline processes and gain entry into necessary services, as well as identify important local resources in your geographic area.
Take care!
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June 30, 2006 at 11:29 am
[QUOTE=OneEyeGeo]i cannot leave because no ramp at my house. been telling people since december i had to have one. [/QUOTE]
Dear George,
There are CILs (Centers for Independent Living) in most areas that usually build ramps in local communities. I’m not sure where you live so…Here’s the link to the CIL in the UK: [url]www.ncil.org.uk[/url] and here’s the link to the US NCIL: [url]www.ncil.org[/url]
I hope that helps!
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