Despite my severe symptoms, due to great financial distress, I have been unable to continue my treatment the past several months. In addition to the heavy stress of my finances and illness, I've been experiencing hardship in other areas of my life and didnt know how much more I could handle.

I had applied for SSDI/SSI several months ago and due to everything I've heard about the process, I was expecting to be denied. Although I felt too weak and overwhelmed to follow through the appeals process, I was already looking for a good lawyer and preparing for the worst.

Well, finally things are starting to look up as yesterday I recieved word that my SSI application was approved FIRST TIME round!!! This is so rare, especially since I didnt have a lawyer. Finally my tears are happy ones!!! I was approved on the basis of neurolgical Lyme Disease, encephalopathy, chronic head and neck pain, cognitive difficulties, etc..

Those of you who know me know how badly I needed this assistance! Thank you to those who have helped me through some very rough times lately.

I see lots of posts on here about Disability, so I thought my post would possibly offer some hope to others in a similar situation.

I wish I knew the specifics as to why my application was approved and similar ones denied. The system is very unfair. Maybe it's random, I dont know. But I will share some things that I did that may have been helpful to my case.

1. First, with help from others, I researched as much as possible about the process so that I had a better understanding of what I'm dealing with. Here are some sites I found very helpful:

Yahoo group - Disinissues
http://groups.yahoo.com/group/Disinissues/?yguid=66992413

Scott Davis articles
http://www.scottdavispc.com/articles/3.html

other links that I found helpful:
http://www.ssa.gov/disability/professionals/cfs-pub063.htm
http://www.anapsid.org/cnd/disability/documenting.html
http://www.anapsid.org/cnd/disability/
http://www.masscfids.org/main/Incapacity.html

2. I paid special attention to the wording of what SSA considers to be the definition of "Disabled".

3. On the application, rather than focusing on the diagnosis, I went into great detail about what I cannot do and WHY. My answers certainly went beyond the tiny space they provide and I attached extra pages, with answers like:

"I cannot stand in one place longer than 4 minutes because...
I cannot sit at a computer for longer than 20 minutes at a time b/c...
I cannot walk around stores because..."

4. In explaining my symptoms and limitations, I focused on the FREQUENCY, DURATION, and SEVERITY and was completely honest about everything.

5. Even if they are not your main issues, if you have any psychological symptoms, include them in your application. I was told that it's sometimes easier to be approved for mental impairments than physical. Providing both could possibly give them an extra avenue
to approve you on.

6. When I initially filed, I had previously gathered all my medical records and I brought copies of ALL of it in to my first interview. My file was HUGE. I also had an excel spreadsheet of all the drs I had seen since getting ill, treatments recieved, etc. (I am blessed with an amazing boyfriend who was willing to do all this for me!) The people at Social Security were amazed and very thankful as it made their work easier. This pushed my folder to the top and got things moving much quicker.

7. Don't assume that our doctors are very knowledgeable about the process and know what to do. There is a good article by Scott Davis (I think?) about this. Our drs have so many patients and cant possibly
remember every detail about each of us, so I wrote a letter to my doctor reminding him about my symptoms, my financial situation, and about how Lyme has altered my life. However, I made it short enough so that I
would be sure he'd actually read it.

I politely asked him to write a letter to SSA, proving to them that I meet their definition of "disabled". I attached a copy of the SSA definition of disability and a list of things that should be included
in the letter. I took most of this info off here: http://www.ssa.gov/disability/professionals/cfs-pub063.htm

I also included a sample letter that would help guide him and roughly based it off the info I found here as well as other places:
http://www.masscfids.org/main/Incapacity.html

Thankfully, my dr did write a good letter, which I truly believe was a HUGE help in my case. As long as your dr doesnt have major ego issues, I found that giving them all that info really helped - its rare when a dr will take the time to do this themselves, so we need to be our own advocates.

8. As they often do, the DDS sent me to one of their own doctors. Some people say to put on an act during these, but I believe they can probably see through that and I always like to keep everything honest. Without a
show, apparently my cognitive difficulties still showed on the tests and his report must have said that as it was one of the factors they used to determine my case.

9. I kept on top of my drs to send in the info that was requested of them. I also kept in frequent contact with my Disability Examiner at the DDS (not in an annoying, pestering way though) and helped him gather all he needed. When I wasnt feeling well enough to make even a simple call, my boyfriend would call and inquire for me.

10. Due to my neurological symptoms, I obviously could not possibly have done all this by myself and I made sure to let them know that. It also took me months to complete the application and I let them know
that too. If they asked for something from me and I felt I couldnt do it in time, I would contact my Disability Examiner and request extra time and tell him WHY I needed it.

This all I can think of for now! I just echoed a lot of what I found on the
sites I listed...but they really did help. Maybe all my effort isnt what got me approved...maybe I was just lucky, I dont know. But I hope this helps someone else.

Now I can finally take a deeeeeep breath and RELAX! (and finally get back on some treatment!!!) wooooohooooo!!!!!

Let me know if I can be of further help to anyone.

peace & wellness to you all

--Annie

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Lyme Out Retreat Website

Lyme Disease Awareness Products

Click here to join Lyme Pals.

I am fairly new to the Lyme World, and was just given this website address from my doctor's office.

It sounds like you have had a lot of problems going on from your lyme disease. Could you tell me (if you don't mind) a little more detail about your symptoms?

I have been told by one specialist that I don't have lyme and by another that I do, so am not sure if I do or not.

I have been on various oral antibodics for 2 years now, but no help.

I was also wondering who is eligible for disability due to lyme disease. I have been a homemaker most of my life only working part time the past couple of years...but have had to give that up due to the illness.

Thank you for any help you can give.

I don't know if it is a step closer to being approved or not.

If it is, it is. I won't be getting a huge amount anyway but anything is better than nothing. I would rather be working than fighting this illness any day.

Good luck to all who is going through this and Congratulations to SunRa.

SSI is supplemental security income that comes to people that have no means of support or very little. Hopefully, if you are insured, you will also get awarded for the Social Security Disability part. This takes longer but usually when you get the SSI, the SSA follows. I worked with all of this until I was bitten in 1994 and had to take the buyout because no one knew what was wrong with me even though I had the bite.

I've been working on SSDI, disability insurance, for 5 yrs. this 8-05! Been a very frustrating, stressful, and expensive adventure.

Go to the DISINSSUES link above & print off the female DETAILED drs. work background where she shows she can't do this & that as a guideline for YOUR case.

FYI, Scott Davis is a lawyer but who can NOT represent anyone in civil/federal court! He never told me this in almost 3.8 yrs. of his being my lawyer until he quit me 8-04 after my lyme dx!

So make sure your lawyer can represent you also in CIVIL court if appeals council turns you down....that is a 8-10 year total process from filing for SSDI and then being turned down every step of the way!

They still denied me the second time. I didn't know what their head doc had determined until my hearing with the judge. I had assumed they denied me the second time based on his findings.

You will find now that you have that major stress relieved, you'll feel better physically, mentally and emotionally. Now you can put your focus on healing.

Us lymies know financial stress, which makes everything worse.

Use that money you saved not needing a lawyer and take care of you.

Healing thoughts.....lightfoot

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C O L O R A D O * S U P P O R T * S Y S T E M
[email protected]

Yo Skeez

Congrats

I guess there arent many times where you can congratulate someone on being disabled LOL

Of course we'd all rather be working than dealing with this awful disease, but good luck to those going through the process.

D.Lee - I'm sorry you may have lyme. You might want to start a new post with your specific questions and hopefully you'll recieve some good advice.

My symptoms include severe head & neck pain, dizziness, sound & light sensitivity, seizure activity, cognitive difficulties, etc, etc, etc...

There are two different Social Security programs that offer benefits to the disabled - SSDI and SSI. They have the same medical requirements, but SSI pays based on financial need whereas SSDI is for people who have put enough money into the system from past jobs http://ssa.gov/

I hope that helps a bit. Best of luck to you.

COL - uh, "skeez"?? go back to bed.