Extremely Desperate For Help

[bcohen7719]

Two options:

 

1) discuss your situation with the Head of Social Services at the hospital where they provide ketamine infusion. They might help, they might not.

 

2) research <http://clinicaltrials.gov/> to see if there is any program locally you

can enroll in at no charge

 

I expect you might know these last resort options already. I'm sorry I can't do more.

 

BC

[Guest Tristan]

BC, thanks for your suggestions. Unfortunately, ketamin infusion is only done in Tampa, and in Philly on the east coast. There isn't anything for RSD patients in S FL. But I will do a sanity check at the URL you specified.

 

There is really no top hospital in S FL. The Univ of Miami is the largest, but only one department even gets a high rating. I'm lucky to have Broward General not far away, the second largest in S FL. It has a Level 1 trauma center. In Palm Beach County, there isn't a single Level 1 trauma center. They send patients down here, some of whom die on route. Most people in PBC don't even know this.

[Guest Tristan]

For Anyone Interested In Learning About RSD

 

RSD Websites

 

 

The first URL is the website for Dr. Anthony Kirkpatrick, University of South Florida in Tampa. Dr. Kirkpatrick is an anesthesiologist who is associated with Dr. Robert Schwartzmann, Head of the Drexel Neurology Department. Dr. Kirkpatrick directs the first RSD treatment center in the US, located in Tampa.

 

This web site also lists the stages of RSD.

 

http://www.rsdfoundation.org/en/en_clinical_practice_guidelines.html

 

 

The following is the site for the RSD treatment center in Tampa.

 

http://rsdhealthcare.org/

 

 

About Robert Schwartzmann:

 

http://www.drexelmed.edu/Home/AboutOurFaculty/RobertSchwartzman.aspx

 

 

The following describes the two types of Ketamine treatments for RSD:

 

http://www.rsds.org/pdfsall/ketamine_neurology_today.pdf

 

 

This site covers high-dose Ketamine research, including a case study.

 

http://www.rsdfoundation.org/en/BrettKetamineResearchVideo.html

 

 

RSD may affect more than 1.2 million people and is higher on the McGill Pain Index than cancer:

 

http://www.medicalnewstoday.com/releases/23366.php

 

 

The following is the website for Dr. Hoosang Hooshmand, now retired, who treated RSD patients for 40 years. The site has numerous questions and answers about RSD, which are called puzzles. I was a patient of this doctor from 2000 to his retirement.

 

http://www.rsdrx.com

 

 

NOTE: The above sites are some of the best, but there are quite a few more sites with useful information.

 

About ¾ of RSD patients are women. Nobody knows why. The following site focuses on what RSD patients experience, physically and psychologically. As with other illnesses, only an RSD patient can really understand what it’s like to have this disease.

 

http://www.forgrace.org/women/in/pain/C105/

[bcohen7719]

Tristan/All:

 

More info if you are interested. Sorry, the first patient is female with CRPS.

You can go to Youtube to learn more about RSD. It is awful.

 

BC

 

[video=youtube;dNlvUDJiSQw]

 

[video=youtube;gkd7dSC0X9k]

[Guest Tristan]

BC, thanks for posting this. I'm sure you saw all the links I provided previously. CRPS (Complex Regional Pain Syndrome) is the new name for RSD, used more often in Europe. You'll find most patient web sites are about women because they comprise about 75% of patients.

 

BTW: I discovered that Paula Abdul, the singer and judge on "American Idol", did an interview around 2005, in which she talked about RSD.

[Guest Tristan]

I called Western Union. I thank that person for the suggestion. The rates vary, based on the state from which funds are sent. The sender pays the fee. The recipient pays no fee. It sounds like the rates run around 8-9% of the amount sent. That's pretty high. The advantage is that the funds are instantly available, and can be obtained as cash. The sender just needs some info on the recipient and the city of destination. Supermarkets, like Publix in Florida, have Western Union outlets at the same rate as going to a Western Union store. So this may be an option to consider. It would be good for me, but the sender would have to weigh the fees vs. the convenience of doing it online with no fees. Again, that means having an ING or Paypal account.

[orbital sander]

I cannot help you, but I wish you the best of luck with your situation.

[+ FreshFluff]

I sympathize with your situation, Trisatan and hope you get the help you need.

=

 

I live in Wilton Manors, adjacent to FtL. I rent a spacious apartment, where I’ve lived for 7 years. My health has deteriorated a lot since I moved into this apartment. I was on SSDI from 1995 until I turned 66 in March, when I was automatically transferred to retirement SS, with the same income. Because my work span was cut short long before retirement age, my SS is half of what it normally is for a professional person. I get less than $900/month. I must have a car. I have restrictions on walking, standing, and other things which make public transportation impossible to use. I have a handicap placard. Public transportation is very bad here.

 

Clearly, my rent, as well as auto insurance, dental work, and other very expensive necessities did not come from my SS income. I went through a variety of other sources. They’re all gone now.

 

I saw it coming, but am human. I went into a state of shock and denial. I knew that if I tried to get help, I would be caught in a morass of bureaucratic procedures, endless referrals to other phone numbers that don’t pan out, waiting for callbacks, people with misinformation, and an overstrained system. The idea of moving again, with all my problems, and living in public housing until I died was horrifying to me. That’s no way to live in retirement. I would probably end up in a rental complex for low-income seniors, filled with sick and dying people.

 

I’m totally estranged from my family. The day after my father’s funeral in 2006, my mother and brother, turned on me and declared war to the death. My mother has always been severely mentally dysfunctional, and my brother has always been abusive to me. So they didn’t care what happened to me.

 

I’M NOW IN EXTREME NEED OF HELP:

I have not paid this month’s rent and can’t. The landlady, who lives in Canada, doesn’t know it yet because I deposit the rent in a local account. As soon as she finds out, she’ll want to evict me, which won’t take as long as it would in northern states. I’m also in violation of breaking a lease. She has the last month’s rent and a half month security, but I’ll never find a subsidized place in time to get out.

 

The Broward County Housing Authority and other housing authorities have a freeze on applications for Section VIII HUD public housing and other public housing. The waiting lists average 3 years. I have identified one possible HUD rental complex, which may have an opening in the next few months.

 

It’s critical that I stay within 15-20 minutes driving distance of my current doctors and a specific pharmacy which is helping me. Any HUD housing will put me in total social isolation from gay people. So it’s also important to be within driving distance of where gay people are, or I’ll spend the rest of my life watching TV. I can’t afford the gas or car repairs incurred by increasing my driving much more than it is. I’m able to get gas because I still have valid oil company credit cards.

 

But you won't have to spend the rest of your life away from your friends--you'll ony have to be ther until you get back on your feet. And can your friends drive to you, especially in this time of need? It will cost money to move, but it that means a savings of a few hundred a month, there's a lot you can do with that. It would definitely outweigh the gas money from an extra, say, 10 minutes either way. (Also, there may be other good pharmacies close to the HUD housing that can custom make your meds for you.)

[Guest Tristan]

I sympathize with your situation, Trisatan and hope you get the help you need.

 

 

But you won't have to spend the rest of your life away from your friends--you'll ony have to be ther until you get back on your feet. And can your friends drive to you, especially in this time of need? It will cost money to move, but it that means a savings of a few hundred a month, there's a lot you can do with that. It would definitely outweigh the gas money from an extra, say, 10 minutes either way. (Also, there may be other good pharmacies close to the HUD housing that can custom make your meds for you.)

 

Thanks for your comments.

 

I need to qualify a few things. The drugs are not custom made. A very special pharmacy in a gay practice is waiving the co-pays if I can't afford them. No other pharmacy will do that. My drugs can cost $60 - $300/Rx cash price. I don't have a drug insurance card. CVS and other common pharmacies require the full amount upfront. I then have to file a claim to get 80% back. I can no longer do that. This pharmacy first verfied my coverage, and then allowed me to pay the co-pay only. Now, they're waiving the co-pay if I can't pay. Due to cuts in fed and state funding for HIV, they are doing their best to help patients with expensive HIV drugs. I must be in driving distance of this pharmacy and the primary practice, where I also get weekly injections.

 

I own a 1999 model car. It's running well, but like any older car periodically needs expensive repairs. I can go in for a $25 LOF, and find out I need $700-$800 in repairs to keep the car safe/prevent more expensive damage. I can't cover that right now. So I have to keep my mileage down. I can't move too far away. Also, the nerve pain increases sitting in the car in longer trips. Right now, I can drive to just about everything I need in 5-10 mins for frequent things, 10-20 mins for doctors. That means I can do 3-5 short trips/day - Publix, CVS, maybe a doctor, going for coffee to be near other people etc. I can go home, elevate my leg for a while, and then go back out. The further I move away, the longer the trips to do things and the less I can do. All the gay services and social events are in Wilton Manors or Ft. Lauderdale.

 

It took me years to put together the 6-7 doctors I see. Doctors do not learn RSD in medical schools, so I have to educate them. RSD is one of 2000 rare diseases identified by NORD (Nat Org for Rare Diseases). Most are not taught in American med schools. Many doctors don't believe it. My family didn't. I have to keep the doctors I currently have.

 

RSD patients tend to be socially isolated. They can't do a lot of the things people like to do. So's it's harder to make friends, and they tend to lose friends. There are a lot of outdoor activities. I can't go to them unless I know there will be a place to sit for a while. There often isn't. I never go to the beach, which obviously is very popular here.

 

My move will be a 1-way ticket. Unless some unusual event occurs, I won't be able to return to Wilton Manors. I will have to spend the rest of my life wherever I go. I have moved 3 times in the last 10 years. There should have been one move from Boston to FL. But everything went wrong - Murphy's Law. Every time I move, it severely aggravates all my problems and can cause more permanent damage. RSD patients can't move around like this. There's too much involved in dismantling and setting up an apartment, even with movers. The last time I moved, I was nearly hospitalized. I got off with a severe case of bronchitis that I treated at home. I could easily be hospitalized from this next move. I'm very sad about the whole thing. This is the first time I've ever lived in a gay village and can openly be gay everywhere east of I-95.

 

I don't have friends who can come see me. And most people here will not drive far from Ft. Lauderdale/Wilton Manors to meet a stranger from an online site. That's the way it is. So the further I go, the more socially isolated I will be. Now, if I could meet an older sugar daddy, with whom I could share an apartment, that would be nice. But sugar daddys usually want guys in their 20's or 30's.

 

I hope that clarified some things. I've been doing a great deal of typing lately, and it's aggravating my RSI's (Repetitive Strain Injuries), which started the whole disability mess. I know this thread is long. But I've provided lots of info and links. Please try to read what you can before commenting. That will cut down on what I have to clarify again.

 

I really appreciate all the supportive comments from members, whether they can help or not. There are some very kind and compassionate people on this site.

[josephga]

I understand way to well about the expense of the medications. I was injecting Copaxone for ms then had to stop about 3 months ago due to the expense.

[bcohen7719]

Tristan:

 

May I 'private message' you?

 

BC

[Guest Tristan]

Of course BC. Anyone can either use my email, or on-site private message, if they prefer. Email is easier for me rather than having to keep going back to the site to reply. But if you don't do email, then use private message.