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| | From:  franknberrie (Original Message) | Sent: 10/12/2008 5:49 PM |
Hi Everyone, I have been dealing with upper body RSD going on for 9 years now, last year my back started hurting and the pain specialist has been doing upper eppidurals for it, now I have had 3 nasty back injuries ..one of them a compression fractured 8th theractic vertabre(right whrer the sympathetic nerves come out and go up and out to my arms. Now the really bad news, yesterday out of the blue my mis back...a little off to the sides of my spine started to hurt so bad I had to be driven to the hospital, thought I was having a heart attack or another blood clot was giving me a problen....it was neither....its a cancer tumor on the Adrenal gland! They did a cat scan and this time because of where the pain was comming from they went a little lower than they did in Feburary when I had blood clots in both lungs. Apearantly the back pain I have been complaining about wasnt my back at all, its been comming from a tumor about 2 cm in length an laying on my right kidney. My heart is in the basement right now, it is just one bad thing after another! I turned 55 this year, I dont know the old man in the mirror when I look anymore. I do not want to be cut on or even be on the table again...im ready to throw in the towel. It is so hard to stay positive when its just one serious thing after another, I ask my self why did I survive the pulmonary embolisms in both lungs? for this? Frank |
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hi there frank so sorry 2 here ur news seams its all lows n no highs 4 u thort i was getting the ruff end ov life.My thorts are with u at this time RSD my living hell i call it hope u get some gud news soon TC xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
From: [email protected]
To: [email protected]
Subject: Really bad news for me.
Date: Sun, 12 Oct 2008 09:49:15 -0700
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Really bad news for me.
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| From: franknberrie |
Hi Everyone,
I have been dealing with upper body RSD going on for 9 years now, last year my back started hurting and the pain specialist has been doing upper eppidurals for it, now I have had 3 nasty back injuries ..one of them a compression fractured 8th theractic vertabre(right whrer the sympathetic nerves come out and go up and out to my arms.
Now the really bad news, yesterday out of the blue my mis back...a little off to the sides of my spine started to hurt so bad I had to be driven to the hospital, thought I was having a heart attack or another blood clot was giving me a problen....it was neither....its a cancer tumor on the Adrenal gland! They did a cat scan and this time because of where the pain was comming from they went a little lower than they did in Feburary when I had blood clots in both lungs. Apearantly the back pain I have been complaining about wasnt my back at all, its been comming from a tumor about 2 cm in length an laying on my right kidney.
My heart is in the basement right now, it is just one bad thing after another! I turned 55 this year, I dont know the old man in the mirror when I look anymore. I do not want to be cut on or even be on the table again...im ready to throw in the towel. It is so hard to stay positive when its just one serious thing after another, I ask my self why did I survive the pulmonary embolisms in both lungs? for this?
Frank | |
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Frank,
Duuuude, brother....if you were closer, I'd give ya a hug man, I'd love to chat with you personally. You and I have had some great communication and I've learned alot from you and through you on this group dude. Don't feel alone man...I don't seriously think you are handed anything in life that you aren't capable of dealing with...
I'm at a brutal crossroads right now too. I just dropped outta school because of a 3 week stint in bed, I'm appealing my disability as it was turned down the first time, and I'm 29 almost 30 living at home where I'm very unwelcome and only here because I'm blood, not by choice. on top of that, I've not had a paycheck since the beginning of April and I feel like I'll never get one again...I too feel like I would have been better off dead from my car accident 5+ years ago to be totally honest because if this is how life is going to be for the next X amount of years, I'd like no part of it....
Stay strong frank...I know that not much of the above really helps you feel better about your situation, but just do know that I'm here for you and your not alone!!!
Email me directly at: [email protected] and if you want we can exchange phone numbers and chat dude. If you need me I'm here...you've certainly been re-assuring to me in the past...now it's my turn for you bro....Here's a big E-Hug....(the kind that don't hurt your back...LOL)
~Phil |
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| | | From: SPJ1963 | Sent: 10/15/2008 5:37 PM |
i'm so sorry to hear this Frank! if there is anything you need you know how to get in touch. try to remember that what doesn't kill us makes us stronger and you are an incredibly strong person. keep us updated and God Bless. Shawn |
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My prayers and thoughts go out to you! |
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| Sorry to hear this news frank. i will be thinking of you and keeping you in my prayers. Diane |
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Iam so sorry my thoughts and prayers are with you as well. |
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hey frank I was so heart broken when I read this last week.You are one strong man.It never is fare when you have rsd not have to battle something else.You feel like it never end how I felt about my back and possiably never walking.You just try and put one foot in front of the other it's all you can do really on the day it doesn't work you just lay there you are entitled. I hope you can find the courage with which you have faced everything else to face this too love mirage |
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| | | From: SPJ1963 | Sent: 10/24/2008 3:18 PM |
hi frank i haven't seen you write anything and i just wanted to check on you and make sure you're doing ok! please give me a call or write me back at [email protected] ..... shawn |
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Hi Shawn, Thanks for your concern, I appreciate that. O have had RSD for 9 years now, finding out I had cancer on the 11th of this month scares me...RSD never did that, its just made me miserable and took away my life as I once knew it. Im still not sure what or if I do anything, I havent decide if I want to fight the cancer or let it finish me....I am so tired and really need a break, yes! Im depressed ... Just really not sure where to go from here, I dont know if I have any fight left in me but when it really comes right down to it I may let the Drs do their thing. I already know that I will loose the right kidney and adrenal gland, dont know if I will have to do any chemo or radiation treatments yet, I have some more tests and an MRI they want to do before surgery. Hopefully is hasnt spread to the lung but I can feel pain from the bottom of my right lung when I breath now.. "...gloom despair and agony one me, deep dark depression excessive misery If it werent for bad luck Id have no luck at all...gloom despair and agony on me!. " Any body remember that? Can anybody tell me where that phrase comes from? You get the golden oldie award if you do...you will get a big he ha! |
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Hi Frank, I'm really sorry to hear about your tumor. I haven't been online lately, so I apologize for not noticing it sooner. It's strange that I woke up 2 days ago and the right side of my back near the ribs more hurt like heck. I've been down ever since. I'm hoping it's just a rib out or something. Is there anything I can do to help you? Are you getting good care with your doctors? I've had about 7 or 8 different ganglion blocks, nerve blocks. I'm not too sure that it helped, but you know how you'll try just about anything to get pain relief. My husband just told me now that I told the doctor after having epidurals, ganglion blocks, that it didn't help much. Please write me back and let me know, and what treatmant plan they're giving you. Friends always, Sylvia |
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Hi Sylvia, As for fighting the RSD pain I have had several stellate ganglion blocks, the first one was done in a day surgery center and they used a type of xray to see exactly where the needle and the medicine went...that one shut the pain off completely for about 4 to 5 hours and the pain was back. then I had 4 more done in a Drs office by a different DR, he was the only Dr that would do it in his office(cheaper for w/c) and those put my face to sleep....I was told by the specialist I found after that and he told me that the Dr that did them in his office was missing and the mddicine was going into my face and not down where it was supposed to do, many mistakes were done concerning the second Dr's blocks. Then My specialist done a block right at the base of the sympathetic nerve..that helped for a month and then the pain was back again so we stopped those. Last year my back started hurting really bad, I do also have a deterioratin disc disease and the Doc did some upper eppidurals that helped for 6 months each...except the one I just got a month ago, it helped a little but there was still a lot of pain just below my right shoulder. Well on the 11th that spot went ballistic and I ended up in the ER, thats when they did a upper body scan and fount the tumor. Blood tests were then done and my white blood count was down...last week a sample(biopsi)was done and it is benine(cancerous) I am headed for the table again and I am going to loose my right kidney and adrenal gland, then I am going to have to do some cancer treatment but not clear yet what kind. I have an appointment with a cancer Dr at the local hospital(big place with a great rep for cancer treatment). The pain from this tumor overpowers the burning in my arms and I cant wait till it gone and this new ordeal is over with....I will keep you posted till we cannot post any more. Frank |
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Frank,
Thanks for the update as to your status. ( I am refferring to your reply you wrote to sylvia). You filled us in on some of the exact questions I was going to write and ask you, so you killed 2 birds with 1 stone in essence and saved us both some time.
Thanks for that great email you wrote me most recently, and I'm sorry I've not been able to reply yet. I want to write you a message and I have alot to say, and I've just not felt good enough lately to be able to write it in one sitting and send it all.
I just got the flu shot last week (first one ever) and I got sick from it later in the week and by the last weekend I was miserable. I'm now starting to get over it, and I recieved the shot last Monday...Go figure....Gotta love "modern medicine"....
Anyway, hang in there tough guy, you're doing a great job and thanks for the email again. I promise as soon as I can, I'll reply!
~Phil |
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Hi Phil, I read your posting to Frank. It was really nice, encouraging too. I noticed you said you were turned down for disability with SSI. There is a federal law that states anyone with RSD is auto. qualified to get SSI/SDI. If you haven't sent in your paperwork yet, it would be good to include. Where is your RSD? Mine is only in my legs, and not bad most the time. I had ECT treatments for about a year, and it helped tremendously! I had it full body before. It really only bothers me if a storm is coming, or the cold wind is blowing. Other than that, I'm able to lift weights and do ot6her things I could never do before. Hang in there! It took me twice too! That was before the law was enacted . I've had RSD for 6 years all together. Sylvia |
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| | (1 recommendation so far) | Message 16 of 17 in Discussion |
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Hi, I was just going thru my old mail & found this....im applying now, want more info about this law and where to get it... thanks dawn |
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"Hi, I was just going thru my old mail & found this....im applying now, want more info about this law and where to get it... thanks dawn" The thread got lost somehow, this was to Sylvia in regards to her saying about a law that people with rsd auto-qualify for ss disability. If I'm getting that correctly, I would like any info, as im apllying now for ss disability. |
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