Broke my back and need HELP.....

I've lost track, can someone refresh my memory?:

Is Dr Peters the guy because:

1) He is the only doc willing to do the surgery you want?
2) He is the only doc who thinks that surgery is the best course of treatment?
3) He is the only doc willing to do the surgery for free (or at a discount)?

I'm trying to understand if the reason you can't get the surgery is because no doc other than Peters is willing to do it for medical reasons, or if no doc other than Peters is willing to do it because they won't get paid.
 
After the discogram the Dr. who recommended that be done, told me my only course of action was a disc replacement. The disc's will never heal or repair themselves, they are toast. He said insurance will not pay for this to be done, and that I can not afford to pay for this out of pocket for it cost over 100 grand per disc.

I have not contacted Dr. Peters because he told me the last time he saw me, the only way he would help me was to move. Now he is in California. If he says are you going to move, what am I going to say. I can not do this alone.
You know what I am about ready to just give up. I can barley walk across the room. It has not gotten any better and it will never get any better. I can not go on. I am trying with everything I have.
Now I must go lay down. I spend 80% of my day in bed and its getting old. If the pain would just go away, for a little bit. 15 mins, I would be so happy to have 15 mins pain free.
 
Take your 16 grand and get an extended stay in CA
 
Take your 16 grand and get an extended stay in CA

I think the issue is that he will be incapacitated after surgery that he won't be able to take care of himself. The extend a stay would be fine pre-surgery, but not after. I've no clue on the cost on post-surgery care in a long term facility, but I'll bet you it's more than 16k for the time he'll need to recover.

Disclaimer: I've made many assumptions and could be considered talking as if I knew something...much like the politicians..
 
I think the issue is that he will be incapacitated after surgery that he won't be able to take care of himself. The extend a stay would be fine pre-surgery, but not after. I've no clue on the cost on post-surgery care in a long term facility, but I'll bet you it's more than 16k for the time he'll need to recover.

Disclaimer: I've made many assumptions and could be considered talking as if I knew something...much like the politicians..

A skilled nursing home runs somewhere around $10k+ per month, rehab is probably even more.....
 
I had a very bad day yesterday. I have been dealing with my left hand going numb. Then yesterday when I woke up my arm from my shoulder to my fingertips was numb. If I stood up I became very dizzy. I spent most of the day in bed. Took some sinus medicine and felt better by evening.
Today the numbness is not that bad and I feel a lot better. I relate all this to my back, but it could be my heart. No idea and the wife did not want to spend another day in the hospital with me. I wanted to go, she did not want to take me. Today I feel a lot better.
I am thinking about having a silent auction for my airplanes. Whats your thoughts on this? Should I just sell them or offer them to the highest bidder in a closed auction, keeping in mind the money raised will be going to help my medical needs not to buy another toy.

Tony
 
The numbness could also potentially be due to interruption of nerve impulses up the spine by degenerating vertebral structures.
 
The numbness could also potentially be due to interruption of nerve impulses up the spine by degenerating vertebral structures.

I agree one reason I did not get all upset when the wife said no to going to the hospital. I believe the numbness is back related myself. When standing in the shower it gets really bad, the numbness that is. I have not felt my right foot in years, my left foot went numb about one year ago maybe a little longer. Now my hands are starting to feel as my feet, my left hand anyway. It has not moved to my right hand yet.
 
I agree one reason I did not get all upset when the wife said no to going to the hospital. I believe the numbness is back related myself. When standing in the shower it gets really bad, the numbness that is. I have not felt my right foot in years, my left foot went numb about one year ago maybe a little longer. Now my hands are starting to feel as my feet, my left hand anyway. It has not moved to my right hand yet.

Don't mean to pour salt in the wound, but sustained numbness will eventually result in nerve damage. Those things don't grow back either. Sorry.
 
Don't mean to pour salt in the wound, but sustained numbness will eventually result in nerve damage. Those things don't grow back either. Sorry.

I know, they sent me in for a nerve study. The doctor who did the nerve study sent me to a back surgeon. The back surgeon looked at my records and sent me back to the nerve doctor. His name is Dr. Fortin. He was dumb founded when I showed back up in his office. He told me quote, You need surgery and there is nothing I can do for you.
This was over a year ago. I have really given up hope I will get any help. I did just get a phone call from the billing department just 10 mins ago. They want money and want it by the end of the month.
I tell you this is all about money. If I had it we would not be here talking about this.
This is my life and I must make the best of it. I do not mean to sound bitter or angry but put yourself in my shoe's. If anyone thinks I get joy from telling the world about my life problems, you are very wrong. I did not know what else to do. I will not pull a Robin Williams.

Tony
 
Doc Fortin said you need surgery and there is nothing he can do for you. Can he give you referrals?
 
Doc Fortin said you need surgery and there is nothing he can do for you. Can he give you referrals?

Dr. Fortin sent me to the back surgeon. When I was in Dr. Fortin office the last time when the surgeon sent me back to see him, he said quote, I don't know what to tell you. That has been over a year ago when this took place, it might have been two years ago now.

I must go lay down. I will log back on when I get up.

Thanks again everyone.

Tony
 
I had a very bad day yesterday. I have been dealing with my left hand going numb. Then yesterday when I woke up my arm from my shoulder to my fingertips was numb. If I stood up I became very dizzy. I spent most of the day in bed. Took some sinus medicine and felt better by evening.
Today the numbness is not that bad and I feel a lot better. I relate all this to my back, but it could be my heart. No idea and the wife did not want to spend another day in the hospital with me. I wanted to go, she did not want to take me. Today I feel a lot better.
I am thinking about having a silent auction for my airplanes. Whats your thoughts on this? Should I just sell them or offer them to the highest bidder in a closed auction, keeping in mind the money raised will be going to help my medical needs not to buy another toy.

Tony

I'd think you would get more money for the planes if you listed them for sale on Barnstormers and Controller or type specific sites. Other than e-Bay I don't see many auctions sites getting much exposure.
 
It seems to me malpractice is going on here. When does a doctor or the Center they work for be held accountable for what they have not done for me.

Someone needs to pay for the treatment I have not received but needed so very badly. If this is not a case or cases of malpractice what is?
 
What you've described does not remotely come close to any definition of malpractice. Maybe you're just not a good surgical candidate?
 
I am pretty sure, there are capable spine surgeons in Illinois. There are very few surgeries that can only be performed by one or two people. If your last surgical consultation was a year (or maybe two) ago, I would suggest you seek out a reputable spine surgeon in your area and get this looked at again.
 
I am pretty sure, there are capable spine surgeons in Illinois. There are very few surgeries that can only be performed by one or two people. If your last surgical consultation was a year (or maybe two) ago, I would suggest you seek out a reputable spine surgeon in your area and get this looked at again.


Yes that is what I am doing. I have been waiting to hear from a back surgeon my new doctor wants to send me to. We have heard nothing from this person. So I started doing some digging and found out that this surgeon does not take my insurance or medicare. I have been told to wait until the next January when I can change insurance. The condition I am in and I must wait. If that is acceptable medical practices then we are all in a world of hurt.
I have seen at least 5 back surgeons in this area and none have done anything to help me.
I can also tell by this post this person has not read any of the other posts, I just went through surgery and was told by that surgeon I need back surgery. I went through one of the worse surgeries anyone could go through. It was torture. But this told the surgeons just how bad I am, and that is really bad. I posted the results, you must have missed that.
 
What you've described does not remotely come close to any definition of malpractice. Maybe you're just not a good surgical candidate?

This is just down right funny.

I have a few surgeons tell me I need surgery but you believe that maybe I am not a good candidate. I am not a good candidate for surgery because I do not have the money that the surgeons and hospitals want. If its not about this or money then someone please explain to me what this is about.
I am told I need surgery and need it in a bad way. But no one will help me. I sit and wait. When they found I needed neck surgery I did not have to wait. Within two weeks it was done. Tell me this is not about money.
 
Last edited:
Yes that is what I am doing. I have been waiting to hear from a back surgeon my new doctor wants to send me to. We have heard nothing from this person. So I started doing some digging and found out that this surgeon does not take my insurance or medicare.

It's a free country. For the time being, a service provider is free to contract with the insurance companies he or she chooses to contract with.

You mentioned that you have medicare. There is no shortage of back surgeons that accept medicare, you may have to look around for someone who takes your secondary plan.
Edit: on second thought, we get paid by medicare secondary plans whether we participate in that insurers network or not. I believe that's even the law for supplement plans. The claims cross from mc to the secondary and they pay. So you should be good to go with any back surgeon who accepts medicare assignment. That is if you have classic fee for service medicare, not one of the 'medicare advantage' plans. If you have medicare advantage, you may be tied to the network of whatever insurance companies plan you signed up for. Again, university health systems tend to be in-network providers for all the major insurers while a small-town spine-surgeone may only participate with those plans that make financial sense for him.

I have seen at least 5 back surgeons in this area and none have done anything to help me.

How many back surgeons have you seen since you got the discogram done ?

I can also tell by this post this person has not read any of the other posts,

I did, and they are rather confusing.

From what I can gather you have:
- Marfans disease
- osteoporosis without a discernible cause
- a history of several compression fractures
- a history of a fusion in the neck
- pain and numbness in your arms and legs that has been getting worse
- a recent discogram that shows several ruptured discs in the lumbar spine
- a history of using multiple prescribed pain medications
- depression


Your case is certainly more complicated than your average back pain or spine patient. It has been my experience that complicated patients are sometimes better off at a larger institution like a university hospital where specialists of different disciplines routinely work together to manage complicated patients. In the community, patients with such complicated cases frequently get a bit lost and start to bounce from provider to provider without receiving the best treatment. By getting into the hands of a team of providers from different specialties (rheumatology, pain management, physical therapy/rehab, cardiology, spine surgery), a better result can be achieved. There is no magic 'Dr XYZ' who will be able to fix all of your problems with a single surgery and you wont have to travel 1/2 way across the country to get treatment.

From your location in IL, your best bet is going to be one of the major university medical centers in Chicago. I dont know the medical landscape in chi-town that well but cursory search suggests that Loyola has an adult Marfans clinic in the burbs and Rush has a connective tissue disorders clinic that specialize in your issues. Now, many of the Marfans clinics are driven by cardiology as that tends to be the biggest issue, but all of them deal with the musculoskeletal part of the disease as well. The Marfans foundation lists the following facilities in your general area:

Northwestern Memorial Hospital Contact:​
Northwestern University Feinberg School of Amy Ochs MSN, APN, CNP
Medicine Phone: 312-695-5893
Marfan Syndrome and Related Disorders Clinic Email: aochs@nmh.org
675 N. St. Clair Street, Suite 19-100
Chicago, IL 60611​
Clinic serves adults only​
Medical Directors:​
S. Chris Malaisrie, MD​
Marla Mendelson, MD


Washington University School of Medicine, Contact:
Barnes-Jewish Hospital​
Dana Gima, RN, BSN
Marfan Syndrome Clinic and Center for Barb Stehman, RN, BSN
Genetically Triggered Aortic Diseases Phone: 314-362-1291 or 888-210-8375
4921 Parkview Place, Suite 8A
St. Louis, MO 63110

Clinic serves people 16 and older​
Medical Director:​
Alan C. Braverman, MD, FACC*​
Geneticist:​
Marcia Willing, MD




http://www.marfan.org/resources/patients/find-doctor
 
Last edited:
^^^^^^^

What he said is great advice. At some point you can't just keep bouncing doctors until one gives what you want. I don't wish to offend but how are you approaching each doctor? Coming in and asking for guidance and help VS demanding they immediately do surgery now will most likely receive different responses.
 
Last edited:
Yes that is what I am doing. I have been waiting to hear from a back surgeon my new doctor wants to send me to. We have heard nothing from this person. So I started doing some digging and found out that this surgeon does not take my insurance or medicare. I have been told to wait until the next January when I can change insurance.
Tony, I hope this question doesn't offend you. It won't help your case, but it may help others in the future. When you signed up for your current insurance plan, what criteria did you use to select it? You have many serious and specific issues. Did you search out an insurance plan that covered the issues you needed? One that covered the doctors and hospitals you needed and the treatments and procedures you need? Or did you do like so many other people that I know and just look down the column of premiums and co-pays?


I can also tell by this post this person has not read any of the other posts, I just went through surgery and was told by that surgeon I need back surgery. I went through one of the worse surgeries anyone could go through. It was torture. But this told the surgeons just how bad I am, and that is really bad. I posted the results, you must have missed that.
It is probably true that the poster you refer to did not read all of your posts. But you have to understand there have been several threads with many many posts regarding your information with lots of random details. I believe I have read all of your posts, but I get confused about many of the details. I suspect many people on POA restrict their browsing to aviation related threads with only occasional forays into non aviation posts. You can't expect someone that wants to offer an opinion or suggestion to go back and read every post in every one of your threads.

I know that January is a long way away, but it will come eventually. Keep pursuing more immediate options, but also use the time to investigate new insurance plans. Find out which doctors, surgeons, hospitals, procedures etc that you need, then look for a policy that covers most of that. But expect that it will be an expensive policy. That is probably what you should use the proceeds from the sale of your airplanes to cover.

Best of Luck to you in this horrible situation.
John
 
I do not go into the doctor demanding anything. I ask for help. Maybe I should beg.

When I signed up for insurance I got what I thought was a good policy. It pays everything but I must pay a co-pay.

To wait another year is sick. Look at when this thread was started. Its been 6 months ago. How long must one wait. I have been waiting for over 30 years for some help. Maybe I need to just wait another 30 years.

Then some one posted I have been depressed. Just how does this person know this? I have had doctors look me in the face and say, you are depressed and wanted me to take medication for it.
In the shape I am it normal for one to feel a little down. That is natural, the way its suppose to be. But I need a drug to make me happy 24-7. No I do not. It's normal to be a little depressed sometimes. The doctors wants to treat this phantom disease they call depression but not treat my back problem.

I waited 20 years for the doctors to get this correct. Now I have waited 15 years since being told I have a major problem for anyone to do anything about it. This is not right. Someones needs to be held accountable.

For those who tell me to wait, I hope you go through what I have for as long without any help. I will set back and tell you to wait, its ok, help will come in 30 years.

I say FU. Do I sound pi#sed. You bet I am. Live life like I have and lets see how pi#sed you get.

I need help and have begged for it. As this posts shows, I am not getting any help. I will close this thread when I get some help. I bet this thread goes for years. I wonder what will be said then. I bet it's..hang in there Tony, someone will help someday.

Someday..yea right.

Tony
 
When I signed up for insurance I got what I thought was a good policy. It pays everything but I must pay a co-pay.

This doesn't sound like regular medicare. Is this a 'medicare advantage' type HMO ?
Who is the carrier ?
Do they have a spine surgeon (orthopedic surgeon or neurosurgeon) on their roster in your area ?
Have you requested pre-authorization from your insurance to get care by the spine surgeon of your choice covered as out of network benefit ?


To wait another year is sick. Look at when this thread was started. Its been 6 months ago. How long must one wait.

You shouldn't be waiting one more day. You should work to get this addressed within the limitations that your health insurance coverage provides.

Then some one posted I have been depressed. Just how does this person know this?

I can only go off your writings here. And if you write despondent posts like this:

No it does not get any better with bed rest. I know I do way to much I always have. But its nothing as to what I use to do. Like I said I am having a very hard time doing nothing. I still go out and push my airplane around and do other things when I can. I can not sit and do nothing for the rest of my life. That is not any quality of life, might as well be dead. Now because I say this do not think I want to die, for I don't. But on the other hand that may not be a such a bad thing. I have used up my time on this earth, my time has come and gone. A waste of resources is what I am. No I am not feeling sorry for myself, just living in reality. 54 and I must do nothing and have been told for over 10 years I should be doing nothing. I want everyone to try that. Its sounds great, do nothing what a life. Just try it. Lay looking at the ceiling and do nothing.

...I dont think I am jumping to conclusions if I believe that at least at one point or another in the course of your disease you have been depressed. Depression as result of chronic medical disease is quite common. The problem is when the depression becomes severe enough that it can impair your ability to follow-through with treatment for the underlying medical condition.

I have had doctors look me in the face and say, you are depressed and wanted me to take medication for it.

Those doctors had the benefit of seeing you in person and arrived at that conclusion. Maybe worth listening to them.

For those who tell me to wait, I hope you go through what I have for as long without any help. I will set back and tell you to wait, its ok, help will come in 30 years.

I dont think you should wait. Take the steps it takes to get this addressed in the next month or two. At some point, discs dont get better, pinched nerves dont get better. Attempts to have this heal up without surgery have apparently not succeeded.

I say FU. Do I sound pi#sed. You bet I am. Live life like I have and lets see how pi#sed you get.

If that is the kind of attitude you express towards the healthcare providers who try to help you with your problems, you can't be too suprised if nobody really wants to deal with you.

I need help and have begged for it. As this posts shows, I am not getting any help. I will close this thread when I get some help. I bet this thread goes for years. I wonder what will be said then. I bet it's..hang in there Tony, someone will help someday.

I have yet to understand what exactly the help is you are looking to get here. You mentioned that you want someone to fly you to wherever Dr Peters is yet you haven't set up an appointment with him. Is money alone the 'help' you need ? It's just not very clear how anyone on a internet discussion board can help you.
 
I should not have to request this. As my doctor told me, its the doctor who does this not the patient.





I have tried for years to get this addressed. Many many years ago I was sent to a shrink and told its all in my head. Today they have my records. Its in black and white. What else can I as a patient do? Understand I am in no shape to fight any fight. I am lucky to take care of myself doing nothing.




One can only take so much before one snaps. I had a very bad night like every night and its getting very very old.




Here I am in very bad condition hurting like no one will ever know and I am being told its in my head. Damn straight I was depressed and angry. But its expected and one should not be given drugs to treat it. If the cause of the problem was dealt with the depression would go away. But treat the depression and leave the cause alone. Sounds like every other doctor. Bad medical practice IMHO.


I have fought the fight I can fight. Not fighting anymore. I give up.


Let me set this straight. It sounds like I am pis#ed and every doctor within reach. This just is not the case. My general Dr.'s have all been great. Everyone just wants to help. I have had some in tears while talking to me, I know they feel my pain and will do what every I want to try and relief that pain. But that is just putting a band-aid on the problem.

Its the back surgeons who are giving me a hard time. I am told I need surgery and this has happened more times then I like to remember. I am then sent to a back surgeon and this surgeon then does nothing. I could understand if indeed surgery would not work. But many doctors have said I need surgery as does the files I posted. Its in Black and White. I need surgery. No question. This is nothing new, I have been in the condition for years. THIS IS NOT NEW, I HAVE HAD THIS CONDITION YOU SEE IN THE FILES I POSTED FOR YEARS. Everyone acts like this just happened. This happened those disc going bad and that ruptured disc that is 100% ruptured happened over 5 years ago. I have been living like this for years. I just can not take it anymore.



Really you do not get what medical treatment I need. Did you see that file I posted of the discogram. If you did, you have to ask that question?

If you do not get it and you see the records in black and white, I give up. There really is no hope.

P.S. Not sure what happened but I had to remove all the quotes. When I posted it lumped them all together, the quotes and posts.
 
Last edited:
Tony,
What are you hoping to get from us?
If it's just money, then say so.
If it is comforting pity, let us know.
If it is advice and understanding, then don't unload your anger on people that give you advice or ask questions.

M

Really you do not get what medical treatment I need. Did you see that file I posted of the discogram. If you did, you have to ask that question?

If you do not get it and you see the records in black and white, I give up. There really is no hope.
 
Seeing dr peters was doable in Colorado. Not really doable in Ca. No way I can do that. Going to Colorado was pushing it. But no way am I going to California.
 
I did not join this forum to ask for money. I joined because I love aviation.

I guess my biggest thing was just to bring this to the forefront. Let the world know just how one is treated with a major disease. Let everyone know the fight I have been fighting for almost my entire life.

I don't know. As everyone see's its kinda hopeless. It is what it is and I need to suck it up, I guess.

Maybe I will just close this thread and move on.
 
Really you do not get what medical treatment I need. Did you see that file I posted of the discogram. If you did, you have to ask that question?

I am not a back surgeon. I have done myelograms and discograms and from working with back-surgeons, I can just tell you what I would expect to happen based on the discogram results:
Based on that discogram, at a minimum it would seem that you need a L5/S1 discectomy and fusion, probably with some rods and screws placed from the back and some graft material/cage placed in the disc-space. The other levels have busted discs as well, but at least based on the discogram, they did not create your typical pain so there is less reason to believe that fusing them will improve your problems. From what I have seen done, they would typically also get fused. There may be other things that need to be done, opening up some of the holes the nerves go through etc. this would depend on other imaging and be up to the person planning your surgery.

I can't do that surgery for you. I have been trying to point you in the right direction to get this done, but so far all I get is aggression and not really much useful information.

Where are you located ? (I assume Springfield, IL)
What insurance network are you in ? (Humana, United, Cigna etc.)
 
Last edited:
I am not a back surgeon. I have done myelograms and discograms and from working with back-surgeons, I can just tell you what I would expect to happen based on the discogram results:
Based on that discogram, at a minimum it would seem that you need a L5/S1 discectomy and fusion, probably with some rods and screws placed from the back and some graft material/cage placed in the disc-space. The other levels have busted discs as well, but at least based on the discogram, they did not create your typical pain so there is less reason to believe that fusing them will improve your problems. There may be other things that need to be done, opening up some of the holes the nerves go through etc. this would depend on other imaging and be up to the person planning your surgery.

I can't do that surgery for you. I have been trying to point you in the right direction to get this done, but so far all I get is aggression and not really much useful information.

Where are you located ? (I assume Springfield, IL)
What insurance network are you in ? (Humana, United, Cigna etc.)


Thanks for taking the time to even listen.

The back surgeon who ordered the discogram will not do a fusion. He said the other disc can not take the stress of this and I will be in the same condition I am today shortly after, if he did a fusion. He told me I need a disc replacement but that the insurance would not pay for it. He then said I could not afford this because it costs over 100 grand per disc replacement.

I have a supplement to my medicare through AARP. From what my doctor Dr. Tsang, the sweetest little lady I have met, she said the doctor she wants me to see will not take this supplement. That I should have spent a few hundred dollars a month for the insurance I need. Now I pay around $150 out of pocket for my medicare. The program she is speaking of my Mother told me about a few days ago. My mother has this. But she pays 400 a month for it. I can not afford that and not burdening my family with this expense.

Yes I am in Springfield.

Thanks again and I know I come across really harsh. But this is my life and its really harsh. Most get really tired of hearing about it. Why I have no friends. Who wants to see someone suffering, its depressing for others. I understand this. My family gets tired of hearing about it and seeing it. I try and hide my problems as much as I can. It gets old I know. Why I say maybe I should just leave stage left, so to speak. I have said my piece, people know what I am going through today. I have put my hole life out for everyone to see. If that is not depressing in its self I have no idea what is.

Someone should write a book. With my grammar and writing skills..it won't be me.

Tony
 
Dr.Tsang was the first to tell me that my condition today is not caused by me having Osteoporosis but from me having Marfans. She was the first to ever tell me this. She also wants me to see a heart doctor or a cardiologist. She is worried about the valves in my heart because of Marfans. I spoke with Dr.Tsang nurse last week about seeing this doctor. The nurse told me she has heard nothing from no doctors about my conditions. I understand I am not the only person with issue's. But after 5 weeks now one should have heard something from someone.

My back does not keep me from flying. But the comment about my heart sure does. I would really like this looked at before I ever climb back into an airplane. Its this dr. that will either ground me or not. I can fly with a bad back. But the heart thing is a no no.
 
Last edited:
How do you climb in and out of a plane?
I was getting the impression you are nearly confined to bed.
 
How do you climb in and out of a plane?
I was getting the impression you are nearly confined to bed.

Today I am not sure I could get in and out. Getting in is not the problem, its getting out. But today I doubt I could sit in it for 15 mins. That discogram tore me up. I am in a lot worse shape then when I did that. I hurt a lot more. I mean the pain is 20x worse today.

But last year twice I thought that rescue was going to have to remove me from my airplane. But I know they would rip it apart trying to get me out, so I sucked it up and pulled myself out. It just takes a lot of screaming.

You should have seen me build my hotrod. I would get out of the hospital and not go into the house but right out to the garage to work. I had to make a sling and use my cherry picker to support me. I would still be screaming from the top of my lungs. Only me around to hear. I pull through. I refuse to quite, but have come to terms with it. I have to slow down or I will never again get out of bed. As you can see from the discogram, my back is falling apart. Dr.Tsung sat me down and explained it to me in no uncertain words. She was very clear about it. She said my connective tissue's through out my body are failing and I am in dire straights. I never knew it was this bad.

As long as my heart is ok, I will do what I can for as long as I can, trying to take it easy on my body.
 
Last edited:
They are looking at a date sometime in 2017. I really hope I am not alive in 2017. To live two more years in my condition is just cruel and unusual punishment. I can not imagine living another 30 days this way. Just think if I have to live another 10,20,30 years.

I tell anyone reading this. If you want to live just one day like I do and see what its like. Walk over to the nearest door. Open it. Stick your arm out, now slam the door on your arm. But wait, lets open the door and slam it again, then again, then again, keep doing this all day.

Welcome to my world. But its not my arm, its my complete body. From the bottom of my head to the tip of my toes.
 
They are looking at a date sometime in 2017. I really hope I am not alive in 2017. To live two more years in my condition is just cruel and unusual punishment. I can not imagine living another 30 days this way. Just think if I have to live another 10,20,30 years.

I tell anyone reading this. If you want to live just one day like I do and see what its like. Walk over to the nearest door. Open it. Stick your arm out, now slam the door on your arm. But wait, lets open the door and slam it again, then again, then again, keep doing this all day.

Welcome to my world. But its not my arm, its my complete body. From the bottom of my head to the tip of my toes.

You are on Medicare. This is what your legislators, specifically your representatives, but also your senators are supposed to be helping you with. Get on the phone today and tell them what is going on and ask for help, in fact insist on help. Don't let them blow you off.

https://www.govtrack.us/congress/members/IL
 
In the country of Belgium, someone with a condition such as mine, would write a letter to their doctor. They only write one word, euthanize. Then a few days later someone will come knocking. This person will ask a few questions and if everything checks out its all over. Plan and simple.

If they plan on doing nothing for me they should euthanize me. Its the only humane thing to do.
 
You are on Medicare. This is what your legislators, specifically your representatives, but also your senators are supposed to be helping you with. Get on the phone today and tell them what is going on and ask for help, in fact insist on help. Don't let them blow you off.

https://www.govtrack.us/congress/members/IL

Tony,
PaulS advice is spot on. Call your representatives yourself, or get your doctor to call. That may be the only chance you have of letting the system know you exist and what you need. That is part of their job.
 
Good old Dick Durbin. He knows all about me. I tried to get him to help me when I was fighting for disability. He did nothing for me back then, I really have no faith he will help me today. It took seven years and a judge to get my disability. My family and I went without as we tried to fight my illness. But that is another story.

I am really tired of fighting the fight. I just want all this over. Its come to that time. I knew it would. One can only fight so long. My fight is done.
 
Back
Top