I am looking for RSDers living in the Tampa, FL area
 

Hi my fellow RSDers,
I am thinking (again) of moving to the Tampa/St. Pete area in a few months and wanted to talk to someone that is already living there. How does the weather there affect you versus some of you that have lived in colder climates? I know the RSD Institute is in Tampa so I am sure many docs in the area know all about it and that is a major reason why I would live in that area...versus Charlotte NC area. It is just so confusing but I need to move because it is warmer there than PA and it is cheaper than PA. I just can't live here anymore. It stinks but I thought FL would be better cause the climate would be better year round instead of PA where we only get a small window of warm weather before it is unbearable in August.

Also, not to pry but I am just curious of the social services in the area. I get ss disability now but was wondering if there are more programs for disabled people versus here in PA where there is not much.

Thanks ahead of time for all your help. You guys are the "bestest" buddies I ever had. It is so nice to know I am not alone and you guys ALL get me.
Take care,
kathy d

Hi Kathy,

I live in Tampa, but it is my daughter with RSD. We had a hard freeze for two weeks. It went into the 20's and one night into the teens. My daughter was in horrible pain. We are used to our winters only going into the 50's.

I notice that when we are are getting ready to have a storm, and the barometric pressure drops, she has really bad days. I notice that it is worse during the winters, but I can't tell you that the summers are any better. I think that RSD is a pain condition that doesn't care about the weather. But, I have to say that since we warmed back up to the high 60's low 70's she is doing much better.

As far as social services I can't help you there. I don't have disability for her. Sorry.

Feel free to ask any questions if you need more answers. We do see Dr. Kirkpatrick at the RSD institute, he is out of pocket expenses, and you submit to your insurance company. There are very few doctors here that know anything about RSD. It took over 5 years for her to be diagnosed. She was admitted to the hospital in severe pain about a year ago, and a pain specialist finally figured out it was RSD. We have traveled to the Cleveland Clinic to get help with RSD...So before you move here and make a big life change, find yourself a good doctor and check into the services that you will be able to get. Her other pm is Danya Godoy, she studied under Dr. STanton-Hick at the Cleveland Clinic, she practices in St. Pete. She is wonderful, if you decide to come here I would see her. Hope this helps.

Sandy

Hi Kathy, I have heard Florida has a good state health insurance program. Also, last week, my RSD Dr. that just built two clinics here in AZ said the VA Hospital just put in 16 HBOT I believe he said Tampa. You could check that thru phone information. That is what I'm trying next-the HBOT I'm 61 -had RSD 15 years and full body,internal. Dr. Hooshmand -rsd.rx.com ran a rsd clinic for years, but now retired. still has his website up with a lot of good information. look under puzzles-they are 147 questions from patients and his answers. On the site, he has the name and phone number of the Dr. that took over his practice.
Hope the best for you. I live in Scottsdale, and can't imagine living in Oregon with the rain , snow, and cold. The heat is pretty difficult for me, as I have the excessive sweating so many of us have. We also have a monsoon season July Aug Sept-very humid and rain- Florida has it too. You can go under weather, put in the state and city and find the monthly high / low/ rain/etc. Might be a good idea. There must be someone that is familiar with state's disability. Take care, loretta with soft hugs:grouphug:

Loretta, Don't you have to be a veteran to use the VA hospital? I am a teacher and I have a student who's parents are both doctors at the VA. But, I am pretty sure you have to be a Veteran to use the facilities. If you are talking about Medicaid, she needs to make sure she doesn't have to be a resident for a specific amount of time. Also, who is the doctor that took over for Dr. Hooshmand. You speak so highly of him. Can you post a link to that great web site that you keep referring too.. It sounds like it has such a wealth of information.
Soft hugs to you Loretta,
:hug:
Sandy

Hi Sandy,
Thanks for your help with moving ideas and doctors. It is a scary thing for me. And since my ins doesn't seem to want to pay for ketamine treatments it seems I will be in this terrible forever...until there is a cure at least. I figure I do better in warm weather than in cold weather so I should go somewhere warmer than PA. Either FL or NC I am still not sure but I am checking out my options.

I am like your daughter and others here with the weather change or should I say before the weather changes. I used to be in agony for about 5-7 days before any changes and since going to a chiropractor for two years she enabled me to get down to 2-3 days so I am happy with that.

It seems as it says on his website that Dr. Kirkpatrick only accept payment up front which would be impossible for me to do since I am on a very limited budget. I thank you for the Dr. Godoy information. It will help me should I move there.

It is amazing since Dr. K has the Institute there that you had to travel to Cleveland for help with RSD. Strange. I am real surprised by that. I thank you again for your input. It will help me.
Take care,
kathy d

Hi Loretta,
I thank you for your information about HBOT. I also heard FL has a good state health and social services programs from someone that lives in Ft. Lauderdale area. It is amazing all the help you can get and that will be one of the reasons I have thought about it there. I did get to see a great doctor in Phila at University of PA a few years ago and they said they would not do HBOT for a year and unless all else failed...that was over three years ago. I know the ins would not pay for that either.

I have done alot of comparisions with weather site too. Thanks for your input because it all helps me. I thank you again for emailing me back your information. I appreciate the effort on your part.
Take care,
kathy d

I found Dr. H's site a few years ago and it was helpful as you said. I had to laugh when you said Scottsdale was hot since I used to live in Yuma which is the high desert and is extremely hot during the summer months. I seem to do worse in extreme heat or extreme cold...I need a happy medium for sure.

Hi Sandy,
I know you have to be either active duty or retired to go to a military hospital. I don't know if they would let me but if they could bill my ins I think they would work me in since it is such a different treatment. I was married to a Marine for 9 years if they count that;.)

I will look into their Medicaid too. I was speaking to a friend of mine that lives in NY and she asked a state worker and they said because of my disabilities they would waive many of the rules so I am hoping all the states will be the same way. It is crazy that each state has so many different ins companies.

I think if you google Dr. H you will find a bunch of great things he wrote and his web site. It has about 50 or so rectangles on the site and each one contains something pertaining to RSD. I thank you for your help.
Take care,
kathy d

Hi Kathy,

I took my daughter to the Cleveland Clinic for the Childrens pain rehabilitation program. It is a holistic approach to pain management. We only found out about Dr. Kirkpatrick after we returned. She has gone through two sets of Ketamine Infusions with Dr. Kirkpatrick, but like everyone else it is out of pocket, I have spent over 16,000 dollars for Ketamine infusions. So I am pretty well tapped out financially. I am submitting to the insurance company but it is out of network and has a very large deductible. But the weather is beautiful right now. My sister lives in NC and she has been freezing for several weeks. She lives on the coast. Dr. Kirkpatrick is wonderful. I will pay out of pocket whenever she needs help with her RSD. But, again, there is only so much money... :) If you decide to move here let me know. There is a girl on Face book, she has RSD she is a member of the RSD< (Really Sucks Dystrophy) I met her there, she gave me the name of a PT that has RSD in St. Pete area. It is quite a travel for us, but if you decide to come here I will give you her name and web page.

Let me know if I can help you any more.

Sandy

Hey. I moved from MI to FL for the weather. I was in CA too. I encourage you to come down for a few weeks in the summer. It is very humid which can impact some people with rsd. For me though it is still better then the cold which puts me in crying pain. I was going to go to Tampa and do the HBOT but chose not to. If I did choose to do HBOT I researched it and really just as long as the chamber is a certain kind that is what is key.
On a side note I did see Dr Stanton Hicks and did part of the day program at CC. I know someone who had better results with Dr Stanton Hicks then I. The day program for adults I don't think is individualized enough for rsd. I am still glad I went though I only last a few days and then was refered to the anestesolgist and Dr Stanton Hicks. I also feel like CC has a certain way they treat rsd for almost anyone that goes instead of looking at each person uniquely. If I can help you any way I am here

Hi Kathy
Me and my wife lived in port richey F.L for about 3 years.,,The scenary is beautifull and the st pete is very nice, the only bad part is high humility, and alot of rain sometimes and F.L is very congested,,but your blood does thin out and adjust quick,,we liked the area,exspecially around clear water and st pete area,,,,,N.C is a nice area too,,,,,good luck on your move,,either way,its better than the P.A area,,,and you will be near the ocean,,my wife loves to lye on the beaches,,and the east coast water is warmer than the west{C.A,,,,,,,,,,,,bobber.. of yeah,,alot of mosqitos