It's not your fault, but instead those who abuse it that created this mess
 

If we didn't have so many people who are trying to figure out a way not to work for a living, people like you wouldn't be going through the horrors of getting disability in the first place. After years of watching people get disability for every reason under the sun, the brakes had to be hit. Sadly enough, there's a lot of people who are getting head first slams along the way.

While many end up with attornies as they seek out disability, I had my first check in my account 90 days after I signed the application and applied, so not everyone is turned down. It's all about documentation by the doctors and how well Social Security understands your situation. The better your diagnosis is explained and what your future holds, the faster your claim will go through. Now with all the cut-backs and budget problems nationwide, I have a feeling we're going to see even more people who really do need help being denied what they've earned. It's a hard time to be ill that's for sure.

Best of luck, Bob.

Bernclay,
I want to thank you so much for your input. It does help alot. And yes I will try some of your suggestions just to see what happens. The one thing I know is that my daughter and my husband will not see my psychiatrist with me first my daughter gets tired of hearing about it and my husband tells me he has no time for that sh**. We will deal with it as things happen. I have no support from him with my wc case either.he always tells me to try to get my attrny to get his head out of his butt and get us some money. Right now we are paying over $600 in meds a month and he is tired of it. He thinks if he snaps his fingers that we will get paid back all the money we are owed in meds alone.I try to tell him that it don't work that way that he should know because we have been fighting since 2003.he just gets angry and walks away.I have even gone as far as printing off a couple page summary of what I am going through which he would be able to understand without so many doc terms and he refused to read it. I also printed on off for my daughter that I found on a kids sight that a 13 yr. old at the time had set up and her mom had rsd and she really broke it down so kids could understand and be able to post like we do here about how they are feeling and she did not read the paper or even seem interested in the website. I found it very interesting to see if from a kids view point. So see I can't get my family to even try to understand it.My husband did go with me to one of the IME's that I had to go through and just watched and at the end of the visit he asked if this is a killing disease. The doc said that not a fast one but it will shorten my life span. Nothing else was said after that. Not even in the car. It's as if he really didn't care.Sorry that is just how I portray it from her and him. It is just not fair.I am trying so hard to get them to understand even a little of what I go through and they won't even do it. Now if I knew of any websites or books or anything that would help me understand I would definitely get the book go to the websites or whatever else there may be for me to read so I can understand what they are going through.If anyone has any suggestions please let me know because I will definitely check it out. Thanks again for everything and I promise I won't give up I will keep fighting. God bless you...

Sincerely,
Tracy

Hi again Tracy.

(I tried to keep this short, but hey, it's me…)

I am very sorry that you are having such a rough time. Many of us in here who have had CRPS for 10+ years can think back to a time when things were very rough like you are describing now. I know that does not make it any easier for you, and I know you may not be able to see it now, but if we lived through it to see better days, then you can too. Don't give up!

I am sorry that you are not getting the support that you need from your family. CRPS is bad enough without that unfortunate, and sadly not uncommon, problem. I can only speculate, but it is very possible that your family may feel hurt and scared by what they are seeing, and their reactions (anger, indifference) are just their defense mechanisms.

Regardless of the reasons, you are the one who is suffering and in immediate distress, and your very first priority has to be to try to help yourself. You will be able to address the difficulties with your family later. But you must treat yourself as the priority now. If no one else is focused on alleviating your immediate pain and symptoms, then it falls to you unfortunately, and you must be the one to make sure that you are getting the care and treatment that you need. That is first, everything else is second.

For me, my CRPS caused a complete collapse of my financial and social support structure. Somewhat similar to what you describe, it was up to me to find a way to organize my effort and find a way through. So figuring out how to do this is very important.

Just a note here about my own experience. Over ten years ago, when I got injured on the job and ended up with CRPS, I was living with a woman and we were planning on getting married. Needles to say my CRPS, stress from intense pain, losing my job, money problems, losing my apartment, 8 year workers comp / disability battle, confusion and struggle to understand what was happening to me, and cycling though many doctors (some bad, some good) and treatments (many useless, some helpful) to find proper care, completely destroyed my relationship and it evaporated. I was left with no real options and my parents had to take me in (I can not imagine a greater humiliation for a grown man, one moment strong, in control, on top of the world, the next moment begging for a place to live).

While my story is not a perfect comparison to yours, it is similar in that no one was helping, everyone ran for cover, and it was up to me to take control of my treatment and find a way through. For me, a big part of regaining some control, was retreating from all the extra stress around me, and finding a relatively (not perfect) quiet place where I could regroup, and start to get myself organized to treat my CRPS (and fight my workers comp battle).

Obviously being married and having a grown child is certainly more complicated than what I described. I am only suggesting that you may find it very helpful to figure out how to retreat a little from the extra stress all around you, so that you can get organized and focus on taking control of your CRPS. Selecting out a room in your home, where you can lock the door and just be quiet and alone when you need to, may be very helpful for you. Using this alone space as your "CRPS treatment center" (or my "CRPS office" as some in my family describe it) can be extremely beneficial for both controlling your stress and for getting organized to find the best way to treat your CRPS.

I find it can be very difficult to focus and get things done because of my constant pain and fatigue (especially in the earlier years). When I want to try to work through a complex problem (similar to what you are going through now), it can be very helpful if I write things down. I make lists of my symptoms, medications, problems, possible solutions, goals, etc, etc. It may seem tedious, but I find it is the only way I can focus through the pain and be proactive to find solutions and solve my problems (for example, I organize whatever I need to say to the doctor and write it all down, then when I see him I am sure I will address whatever problems I am having). Keeping a daily pain / symptom / medication / treatment journal is very useful for this.

The most important items on my lists were to find the best CRPS specialist (I saw many, many, many doctors before finding the right one), find the best pain therapist (again I saw many wrong ones before finding the right one), find the best lawyer for my workers comp battle (I spoke with at least six before finding the right one), find a quiet place to get organized, and most importantly to be my own advocate and be as proactive as possible with my treatment. This is a long battle (as you already know), and you have to get control in order to fight through it systematically to get positive results.

It is extremely important that you get the information and support that you need, and that you don't feel like you're alone in this. Many people in this forum have suggested http://www.rsds.org/index2.html as a good starting point. I have also found this forum itself to be full of very helpful people and useful information, and it can be a good substitute if you are having trouble finding support elsewhere.

I hope this may have been helpful to you. God Bless You.

Bernclay- :holysheep:

Bernclay,
I want to thank you for everything. You have helped me a great deal. You make so much sense and i need that kind of support,especially with everything that i am going thru.I can't thank you enuff. You as well as everyone else on here have been such wonderful friends and so supportive. It is so wonderful to be able to come to at least one place that I can feel cared about. Thank you all so much.Have a great memorial weekend!

Sincerely,
Tracy

You’re welcome Tracy. I am glad my posts were useful to you, and I am happy to be of help any way I can. I am sure everyone else in here will also do whatever they can for you. Keep us posted on how you are doing. Happy Memorial Day. God Bless You, and God Bless All Our Brave Men and Women in Uniform Defending Our Great Nation.

Bernclay- :holysheep: