Larry King show..KS hit's the fan...
 

:mad::mad:

I couldn't take it anymore!! Any one want to join me when I have tea and visit with him?????????????? Jeanie..Sandy..You better be there!! You too Bobber.. Read on....



Dear Larry and staff:

I have been a fan of your show for many years but today I have to write and say I am appalled... Larry, you gave 98% air time to someone who has had the medias attention for his bad doings and wrong choices ... he has brought on himself.. and instead you gave a "blip" of time to a young beautiful woman who suffers from a debilitating..horrifying, painful illness...You did NOT even mention what the name of her chronic illness! It's called Reflex Sympathetic Dystrophy... Larry, I HAVE RSD... I am among many who suffer from that "nameless" illness, known RSD. I can tell you first hand ..it is the worst, debilitating, painful, life altering, degenerative illness out there.. shame on you for not allowing more precious air time to our illness...We need to bring awareness to RSD and we really need your help and support.. and we won't get the way you handled that "blip" last night!! I would be thrilled to meet you and talk with you first hand about my condition with the hope of making the world aware of the countless others who suffer daily with RSD.. I would hope you will find it in your heart to extend yourself to aid us and stop spending so much time on the "whatever" that is going on out there!!

Sincerely,

Count ME IN . I posted a thread on the RSD Facebook page to express how dissapointed and horrified I was at the show last nite. I rewound my DVR 3 times to make sure I did not miss anything,but NOOOO once again we RSDers got shafted out of a golden opportunity of even a mere mention of our disease. Was this done on purpose??????? Makes me wonder, but I am FUMING MAD AS H________ over it. Once again we get the shaft at a perfect opportunity to spread awareness.

Carol

Kathy, You are so right about all this monkey business. First of all The "blip" you talk about was not at all about rsd ,it was about a cute TEENAGER with a chronic illness, that got books from people who knew that reading helped ease her pain, well where did that come from? She must have done some kind of interview with someone and told them she had rsd because where did the rsdsa see in advance that this was going to be on t.v. I also think it was unfortunate that Tiger's first day of play was yesterday because Tiger is news, and from that stand point I can see why he felt it had to be dealt with lastnight, but he could have put a stop to alot of that talk and maybe re scheduled either the cute teenager or Dr. Laura. I bet you anything he has no idea what rsd is, well I'm on board with you Kathy! You go girl! Wendy

Thanks family..I am just sick and tired of this "let's keep RSD a secret" .. while we all suffer.... I ma on the war path..it's a big bus..plenty of room for all of my family here..Watch out Larry..and think you had your hands full with Tiger!!?!! you ain't seen nothing yet!!

Hugz, Kathy:grouphug:

HI Everyone,

I am also an RSD sufferer. However, I do have to say that I was surprised about this thread. I also saw the article on CNN about this teenager.

I guess I just don't understand the level of anger. Remember getting all worked up about things that we can't control only creates more pain. No matter how angry we get or how much we talk about this, it's not going to change how much air time is given. Tiger creates viewers. Not to say that RSD isn't as important. I also don't agree that RSD is being kept a "secret" It's not a secret, there's just limited information out there about specifically how this can be treated. They don't know. That's why it's trial and error.

My motto is to worry about things that I have control over or I can change. If I can't change it or have control, it's not worth the increased pain.

RSD is what it is. I have less pain because I don't worry about things I cannot change.

Hi Dealingwithtos, Excellent Motto!!! I too live by the same standards. I have rsd in left foot and causalgia in right foot. My question is.....what the heck is it? Aside from intense burning pain, not minimizing that at all, really, everyday I tell myself not to sweat the small stuff, and it is what it is, but really scientifically they don't know what it is!!!! Alot of assumptions....oh well just thought I would throw that out there.

Jeanie

Hi Jeannie,

The answer to your question is.... PAINFUL.

I'm not a doctor so I can't answer your question any further.

I'm not sure that knowing exactly what it is is going to help our situation. We will still be in pain. I'm just sorry for those out there that aren't finding a solution to their pain and aren't able to live their lives with some sort of normalcy. Maybe that's what started the negativity in this thread.

Dear dealingwithTOS:

This thread was begun by me. It is plain and simple that I had still do have negative feelings the way this 1 min. blip was handled..nothing more, nothing less... its merely my opinion. Further, I dare say that I am probably one of the more optimistic, pain med free RSD patients who carry on dialog on this forum.. everyone has the right to say their peace and I would appreciate you not questioning the intent of my thread.

Kathy

Wow girl, settle down, dealingwithtos' opinion has some merit to it. By you getting upset and enraged is not good for your pain!!!! THAT'S bottom line. Living in the moment is what we have. First and foremost, find a doctor to go on national television with us and explain this ugly illness....that probably won't happen and that is where our problem begins. They can't explain it, its from an unknown origin...right? We all know that living in our moments can be excruciating some days, and we have to all have a place where we can go to manage our condition. Some go to a dark place, been there, don't want to go back, and some just learn to make pure wholesome peace, regardless of the illness. That is okay. I admire you for fighting for us, but you may want to try Montel Williams, who also suffers from a debilitating disease, maybe he has a great doctor on board who could shed some light on this and give this illness a fair shot!!! Cool down my friend, if CNN does not respond to you look for another open door. I mean, am I willing to go on national television and show my mangled foot and leg just for air time? It probably won't change anything, except it would leave me feeling worse about myself than I already do. However, if we had the proper equipment, such as a stand up doc, to explain the response to this disease, and possibly some great solutions then I would take one for the team! God Bless You All!!!!

KS, start paddling, it will burn some of that energy, and Screw Larry King!

Your Pal, Jeanie

Isn't about time Larry King retire? I mean really he seems to be an old wore out ole bag. He's starting to resemble a spooky antique doll in an old Chiller movie I saw as a kid starring Boris Karloff. :D :D The questions he asks guest seem so trite and scripted-"So, how did it feel to almost drown, get shot, fall down 10 flights of steps, lose legs................." or "Would you do it again?" and then cut to the 50th commercial. He ought to give it up and remarry. :D

Best farewells,
Jim King

Jim.... Funny part is..I think he is married...for the 7th time..
and I couldn't agree more..maybe he thinks he asked the proper questions about the idenity of RSD....and just didn't.... Ok, Jeanie..I will stop..

Kathy

My dear friend Kathy; all I am saying is right now YOU....need to save your energy and fight for that ketamine treatment that is going to put you in remission or maybe cure you!! Your intentions are awesome, and your energy is great, but save that for something that you can change.....and that is YOU! You are what is important to me, not Larry King or any other person out there who doesn't have an ounce of compassion!! After you get your Ketamine, then you can fight for the cause and possibly the cure for this unknown illness. I will support you whatever you choose to do! BTW, I am in Michigan....brrrrrr.

Wishing You All a pain free evening,

Jeanie

Okay Jeanie.. I'se gotz re-newed strength to dig my heels back in and fight after today (that is)...See MVP, my ins...well they won't approve it for my treatment but they constant call me and say..how ya doin??? Well if y'd approve my treatment..one might think I'd be feeling better, no I don't say that..ya would think I was a grump or somethin..I just paly along..nicely..so the person behind the MVP wheel then says..keep fighting for the approval..Seriously, i know in my heart it is the right thing to do and then mydream is to come back and help everyone here..not fair I should rep the benefits and not all of you too...That would make my day..whole year!!!

Man, Jeanie.. Michigan..how ever are we going to borrow sugar that far away???? Have ya seen my walk?? Ain't pretty... I know, I will row over/down there...keep watch so I don't flow too far down stream, my dear friend!

Hugz and I am with Jeanie... bless you All!

Kathy:grouphug:

That about sums it up---an unknown desease. Funny because as we speak my wife and I and attorney are gathering all medical records for my wife's SSDI judge. The older records reflect my wifes efforts not to be tortured and jerked around by doctors who think all she needs to do are jumping jacks and a few laps around the track in order to clear up her RSD and the lawyer knowing how tough it can be to articulate this unknown desease to a judge. :)

My previous insurance company would not approve my wife's ketamine infusion. We fought it and won. Looking back they didn't put up much of a fight however.

Jim..Was it for your wife to have the 10 day out paitent infusion or the 5 day icu inpatient sleep??? They are asking me to have the 5 day inpatient sleep..

Kathy

Acturally it was a 4 day outpatient infusion. It didn't work so they tried a 4 hour lidocain infusion with no luck.
Question, is this a 5 day coma treatment and if so where in the US do they perform this? Because I've thought only Germany and Montarey Mexico perform that procedure.

Hi Kathy,

Have you maintained that you want to return to work? And that the only treatment remaining for you to try is ketamine? You've exhausted substantially all others in your valiant attempts at getting back on your feet? Even the stupid SCS which made your RSD angry and even more painful!!

My RI RSD friend who traveled to Drexel for the 5 day inpatient ketamine infusions ended his treatment there today. So far all reports are positive - he is pain free!!! and suffered no problems during his stay in the ICU. Great news for him and his family!

It's interesting that the insurance company is keeping in touch with you. Hmmm. Wonder what that's about?...

Sorry for your disappointment so far. Don't ever, ever give up. If they will pay for the 10 day outpatient, why not try that? It's better than nothing.

Love and peace, Sandy

Hi Sandy...

Thats aweome news about your RI friend..Plz. congrats to him when you can and his wife..also keep us up to speed how long he has his pain relief....

Yea, I have exausted all of my other attempts for help to this point.... UGH/... yes, I thought it was strange also that the insurance company called and chatted with me..She is from another area of the company..When I inquired she explained this is another part of my benefit that when a person is diagnosised with a serious illness they try to help you out and monitor you both physically and mentally... hummm..lets see the cash but she said that is not part of her obligation there...she has called several times, today being one of them... As far as the 10 day outpatient..great thought..I did ask about that instead and Dr. S said he felt I would not benefit from the low dose so he zoomed right past that...I thought it too would be a possibility...Yea..I 'd give my front teeth to be able to go back to work..I have mentioned that to the Dr. and plan to mention it in my negocations too...it's lonely at home..

Jim..To clearify..the 5 day in patient in the US is done @ Drexel..the Heineman Hospital..although it is a "sleep" but not a coma, it's the moderate dose level ..The coma, higher dose of Ketamine is done outside the US in Germany, possibly Mexico still...

I love visiting with you all..Thank you for such thoughtful questions and concerns....

Sleep well and rest without pain...

Hugz, Kathy:grouphug:

I would swear that someone mentioned, about 5 - 8 weeks ago, that Dr. Schwartzman's German operations were no more. Does anyone recall?

And let's not underestimate the abilities of our favorite Philadelphia doctor to be delivering what he believes are truly therapeutic doses, especially in an ICU unit. Granted, people may not be intubated, but I am curious as to the doses that - for instance - Sandy's friend was getting.

And don't get me wrong, he's one of a very few doctors I've had in whose hands I would willingly put my life. (Just with my glaucoma, ketamine isn't an option. A "nontransmural" MI a few years back didn't advance the cause either.)

Mike

Sooooo, exactly what is her obligation? Is it like, how is your pain today, and how does that make you feel type thing? Tell her exactly how you feel every moment of every day, tell her about the debilitating pain that you have to live with because they will not give you your American Right, tell her the effects this has on you as a wife, mother, human? Tell her they euthanise dog's in America for this type of torture!!! (No punt intended, I love my dogs).
ask her if she has a family, a job, a life, ask her if she enjoys her freedom to choose, ask her how she would respond to your situation. Tell her what she needs to hear not what she wants to hear.

Jeanie

Weee doggies... Jeanie..all of your points are very valid..very valid and you are right..I have not dealt her any room for question on how murderiously, painful my/our illness is..day in and day out..everyday.. And exactly that is ALL she does is the ole' how are you faring and feeling with your life.. I asked her how she came up with my file and she said it is in the system as a debilitating illness and they worry about me...UGH!! I think she feels bad for me in that I may end it all or something... well show me the cash then!!
Only thing is..I think were going to change roles today and I will have to calm you down..just as you had to calm me yesterday..I better do all of the paddling today.. you should relax..hows that sound?..


Hugz my sista, Kathy

It is my understanding that the Germany facility, where the ketamine comas were performed under the care of Dr. Rohr (in cooperation with Dr. S.), has been closed indefinitely due to one death and one paralysis, both attributed to MRSA. They are still doing the comas in Mexico, that program is in cooperation with Dr. Fitzpatrick.

I asked my friend's wife what his daily dose was - she didn't know. I will try to find out when he comes home and will post that info if I can get it.

Kathy - keep trying. Go for whatever you can get. There is a woman in our support group who goes to the Beth Israel in Boston for really low doses of ketamine only once every 4-6 weeks - it took her 10 months to get up 100 mg. It has changed her life. It isn't a cure for her. But things are so much better. She can walk again. So try to get whatever they will approve!! Don't let up on them.

I am leaving for NJ for my ketamine treatments in 4 days....feels like I have been waiting half a lifetime for this to happen. :)

Love and peace, Sandy

Sandy..

I am so happy for you with your upcoming Ketamine treatment... Please, know how incredibly, awesomely proud I am of you for all of your determination and hard perserverance it took for you to get to this spot in your life... You go get em, honey..We are all here in your support and while you get your treatment, know we are thinking of you and wishing you the very best..and by chance you have a day in not feeling optimal..just hold your head high, for only a split second and think of us as we all are there wih you in our hearts and spirit.... do well and feel better, I will be waiting right here to read up on your results once you are feeling better and relaxed!!!

Luv ya my friend..Kathy:hug:

Oh and I won't give up just as a result of your positive influence and determination!!

So very true!!! (see bolded above). One of the sticking points with my wife's older doctor records,for the upcoming SSDI judgement, is his low amount of pain control he provided for my wife. Cymbolta and, this is true, one vicodin a day that my wife broke in two, one for the morning and the other half for the evening. She ate advil all day. Pathetic!

You said it....he provided. Did she have a choice in that matter. What were the side effects of her managing that pain without the medication. That should not be relevant as she had no choice in that matter. Pathetic is putting it lightly, Express the impact on her life due to the fact that she was not able to properly control her pain. I will pray for you and Suzy for a positive outcome. This should just be the least of our worries.

God Bless

Jeanie

Thanks, Wilbyfree! The side effects that I could see was the spread of RSD from her arms into her legs and feet. Swelling in her hands, knees, red and blue feet and toe nails that now grow out of her feet on a 45 degree angle. Her mental state throughout wasn't good. Many of her earlier doctors focused on her mind instead of her pain. One particular doctor's record reflects this when he states that her psychological issues is effecting her physically. I will say my wife took both lyerica and Cymbalta and it made her feel very bad and stopped using them. Having known my wife for 30 years I can say without a doubt that the pain was effecting her mind, not the otherway around, I am absolutely convinced of this and was the driving force that got me motivated to go to every doctors visit with her.

When my wife first contracted RSD she kept it a secret from me for two years, fearing I may leave her. The first four years she had very little treatment and was ignored by many doctors. Another words her early management of her pain forced her to go to many doctors which opens another can of worms for those with this desease.

Jim..Reading your post just nails my feeling even futher in that I wish the professionals right down to our aquaitances need to understand that the RSD waters run so deep..We are NOT only affected by our physical changes but also our inter most being takes such a hit... It breaks my heart to read and understand and to then relate to what our friends with our disease feel..Daily... I will never know how the ins. companies as well as outher professionals, who are essential to our health care and well being can not only see this but to feel it too...You don't even have to be a "feeling" kinda person to see this!!! Just breaks my heart...Jim, you my friend are a good guy and a wonderful husband..!!

Take care, Kathy

Jim, I do not find it uncommon to be underdiagnosed and under treated at the beginning stages of this illness. For three years I worked 10 hour days, 2 Vicodin, 1 Zoloft. I suffered immensely from this. I mentally broke down due to the pain. My doctor knew what I had, but did not know how to treat it. He then, just to keep me doing "jumping jacks" prescribed me Valium. (that was a combination). Now they know that if they respond quickly with injections, there is a possible remission. But five, ten years ago they did not know that. Focus on the progressive effects mentally and physically this has had on your wife, the slow decline, the losses that she had to endure and may still have to endure. I was not depressed until the unrelenting pain began to take away all of the things in life that I loved and was working for. We have to make choices, moral choices as to what is really important, we have to make lifestyle changes in order to cope and stay saine. We have very little room for error in our days. Some days we don't even have that. In the winter, I do not leave the house, it is just not possible, that is not a choice for me. And then we have to accept all of this and try to convince ourselves that we are okay. We cannot give something that we don't have.

Best Wishes,

Jeanie

Jeanie..

You sure have had a bunch to go thru as the rest of have.. I am really sorry...

I just want to say you are such a peach!!!

You're a dear buddy, Kathy:hug:

I sure can identify with the anger that started this post, but most of my anger has been with doctors more interested in their best interest than our pain. How could we trust the tv idiots to ever get it right when the doctors cant even seem to get on the same page.

After 10 years the anger has turned to mostly frustration, but it doesnt take much doctor stupidity to get the anger worked up LOL!

Hey Jim, I thought I would share with you and anyone else that might be facing an ssdi/ssi hearing something that I think swayed the judge in my favor. This wasnt planned but happened in the moment, the judge after hearing mt case asked if there was anyone with me that might be able to testify in my behalf. I hadnt brought anyone, but my son had brought me to the court.

My attorney went out and asked him if he would mind if the jugde asked him some questions, and he said sure. The judge asked him if I was different now that I had RSD, and what were those differences. Now it was very hard to hear from someone elses point of view how my being disabled affected the people around me, but it was the story he told of how we used to camp, go to ballgames, and how I played with the grandkids before my disability, and how I dont do any of those things anymore.

Then he added he doesnt even like to bother me now because I never come out of my bedroom, and he could tell that I was not into visiting like I used to. There were other bits of info that he shared as they asked him the questions, but I do believe with all my heart that this was the swing factor in my approval.

So if you have any friends or family that has been affected by your wifes disability. You might ask your attorney if that would help her case.

Hope everyones pain is in check here in 2010 :grouphug:

Allen..

We my friend are sure victums of the system..I think that was what had my dander up when I began this post..I felt that once again..we could have used recognition even if it was not planed nor an hour worth of jabber..just a mere mention for RSD'ers..who are great people and who have loving hearts and take care of eachother..we just have trouble seeing ourselves thru each day cuz we can't see past our pain...I didn't mean to hurt anyones feelings or ruffle feathers.. I think we have more hope closing our eyes at the end of eachday and hoping we will wake up better all on our own and that would be a fluke... I have more hope in that than anything..

Have a good night, Kathy

Kath.....if it makes you feel any better, I'm sure Larry King will be in severe pain himself as he makes out those child support and alimony checks ;)

This issue didn't bother me much because I have never, and doubt I will ever, watch his show. If it was Oprah or Dr Phil which I sometimes like to watch, then I'd have more to say on it !

TShadow on the TOS forum has done letter writing campaigns to Oprah and Dr Phil to try to get them to do a story on TOS and RSD, really, for all of us living with CP.

I agree with other posters that overwhelming anger can worsen our sx's.

I disagree with them that it's not worth it for you to vent/start this thread. For one thing....venting is good ! If you are feeling it, better to let out anger than keep it in ! I for one am impressed that you actively did something about it by writing to the show. Good for you ! There is a difference between moaning about something that you can't change and complaining about something WHILE TRYING TO CHANGE IT which you did by writing in and trying to get others to do too.

You go girl !

Hey Finz...

I like you..thank you for your words... Notarity is only part if, I realize the attention for support and help goes along with that..and yes, stress is our enemy.. see picking our battles is huge in order not to allow ourselves more pain..this guy is not worth it and never was..as they say, every dog has their day.. he'll find what the really meaning of support is...it only took him 8 trys..so be sure to put those commas in the right place there, Larry.. In the mean time, we are all our own advocates. It is a full time job managing our RSD lives .. I am so glad I have you and countless others in my life..I know it would be a lost, unknowledgeable journey otherwise...

Have a pleasant day, Finz...

Kath:)

Did anyone notice my post about Larry to remarry? I posted it before the news hit the air about them getting a divorce. :D

allentgamer, thanks for the advice about testifying because that is what her lawyer wants to do. I will testify on her behalf. As far as changes from then till now? Everything has changed and frustration abounds every single day fighting a system that doesn't mesh well with those who are chronic, a nation that only thinks in terms of money and labour even when policies were paid and both myself and wife's paid labour equals 65 years. All our savings are now gone. If she is again turned down, we will have to sell our home.

Jim - I'm really, really sorry. Sometimes life is just not fair....XOXOX Sandy

You are correct. In my 52 years I've seen my share. I was never one to sue, I and my wife are hard working folks. I've paid taxes non stop sinse 1971, sinse I was 14 years old. Even when Suzy broke her arm on my sister's broken up padio by tripping over severly broken padio block, we did not sue her insurance. It was this brake that started it all. But one thing I will never tolerate is her rejection from what she paid for and is entitled to and that is her SSDI and medicare. I will never stop, never.

Jim I am sorry too for that added struggle.
Did anyone notice this girl is on the aol home page today?

Please hang in there. Hopefully his will just be the darkness before the dawn. I too have fought with but my daughter, who a social worker with lots of disability experience was there to help me. Of course I was denied the first time, and we appealed. When I went to the second hearing, the board seemed to have the attitude of why did you wait so long? and I could have just screamed!! The good news is that once your wife is approved, everything is retro-active back to the time you first filed. In the meantime, maybe possible help can be found from family services or your church family. Please remember, people who care can not help unless they know that there is a need. Lisa

Jim, You are your wife's advocate, as my husband is mine. He has fought the insurance company, the doctors and even family members. I could not have made it through these last eight years (mainly the last two is when I really went down). What were the legal basis of the denial? almost everyone gets denied the first time. Then you appeal and go before the ALJ. Have you gone there yet? If not, this is your time to witness on behalf of your wife's debilitating illness. You know your wife better than anyone does. KS, hit it right on the nose when she said dealing with the pain is a full time job for both of you. My husband gets up everyday and goes to work, but before he leaves the house, he sets me up for the day. He gets home and the same thing, he has to help me finish the tasks that I attempted to do but just could not finish. He is really working two jobs and it is just not fair. May I add, prior to this illness, my husband use to get mad because he would get up in the morning and go for a bathroom run and I would make the bed. Now, he could go to lunch and that bed just might not get made. I am an optimistic person, I tell myself every morning when I wake up my glass is half full. But the reality is, by 9 am, no matter what, my glass is empty, no matter how I look at it, it is empty. You need this greatly now in your life and God knows that, stick to the facts of what your wife is capable of on a daily basis and the dependance she has on you. You truly are a wonderful husband and caretaker, I know I have one just like you. Take care

Jeanie