<st1:PersonName><st2:GivenName>Janine</st2:GivenName> <st2:Sn>Jackelen</st2:Sn></st1:PersonName><o:p></o:p>

14144 <st1:place>S Washington</st1:place><o:p></o:p>

<st1:place><st1:City>Casper</st1:City>, <st1:State>WY</st1:State>  <st1:PostalCode>82601</st1:PostalCode></st1:place><o:p></o:p>

<st1:phone phonenumber="3074725054">(307)472-5054</st1:phone><o:p></o:p>

[email protected]<o:p></o:p>

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In regards to: People with Reflex Sympathetic Dystrophy (RSD) AKA Causalgia, Complex Regional Pain Syndrome (CRSP) and their fight with  the System.<o:p></o:p>

Dear Madam or Sir,<o:p></o:p>

I am writing this letter because there are many people in this country, including me, who have a horrible disease called Reflex Sympathetic Dystrophy (RSD). The reason I included numerous also known as references in the in regards to area of this letter is because the doctors in this country and around the world cannot agree what to name this disease. While the doctors are arguing over the name, how to treat this disease, and how to diagnose this disease properly, the people who have the disease suffer alone. It is only when we begin to research this disease that we eventually discover that we are not really alone but that there are hundreds even thousands of others who are also suffering.<o:p></o:p>

Reflex Sympathetic Dystrophy is a disease of the central nervous system  that causes chronic pain, muscle atrophy and dystrophy, dramatic changes in the skin, and as an effect of the medications to manage the pain loss of memory especially short term memory. The pain those of us with the disease suffer is the worst pain imaginable; it is a combination of every pain one could ever think of. Imagine having a broken leg, then a stubbed toe, then severe muscle cramps, and then any other pain you can think of. Now imagine all those pains coming at the same time. That is what we are living with on a daily basis. Yes these pains can and do all come at the same time and it may last minutes, hours, days or weeks at a time.<o:p></o:p>

Now picture yourself having acquired the disease because of an accident at work and you have to fight the workman’s compensation office in your State. You know from your research of the disease and from your doctor’s diagnosis that was once in your arm has now spread to your leg, but the workman’s comp office has cut off your TTD payments because they say it does not spread. Try living for months at a time, while you wait for a hearing, having no income. You have children to support and your husband is currently unemployed because of the economy. Your employer will not allow you to do light duty work because part of your pain management is to take methadone and percocet to control the pain.<o:p></o:p>

Maybe you can picture better trying to get Social Security Disability which all RSD patients have to depend on at some point because RSD eventually totally disables you. The thing is it is months and sometimes years before the red tape can be cut through to get this money. In the mean time the income that we were used to when we could work is no longer available to us. The number of doctors who are waiting for their payment is mounting, and then there is all the lab testing and so forth that isn’t getting paid. Eventually these folks want their money and so now you are into collection agencies for tens of thousands of dollars or more. Yet you continue to wait praying you do not wind up on the streets. Your children want to know why they can’t have the things they had before you got sick, they become very angry and remain that way for longer and longer periods of time. Your spouse or significant other may leave you because you have become a burden to them, sex has become out of the question because of the pain that no matter how many meds you or on or how many procedures you have done just don’t take away all the pain. The pain is not selective either and so it attacks your sexual organs.<o:p></o:p>

I hope you can see where this letter is leading. I had to show you what we are going through in order to make you understand this disease. None of this is exaggerated; as a matter of fact I may have down played it more than I should have. This is a horrible disease and the main thing that will help with the pain is living as stress free of a lifestyle as possible. One way you can help us to control the pain is to look into the Social Security and Workman’s Compensation Offices in your State. Once you do I am sure you will see the need to reform the policies and practices of these offices. People with RSD are not the only ones who face this kind of treatment but it is the disease that I know best because I have spent every day for over a year dealing with this disease, a disease I got from what was a minor injury. If you really care about those who put you into office you will look into these systems in order to make it a more caring system for the people of the <st1:country-region><st1:place>United States of America</st1:place></st1:country-region>. Please help us.<o:p></o:p>

Sincerely,<o:p></o:p>

Janine A Jackelen, AASW<o:p></o:p>

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