Any ideas?

Hey All,

I havn’t been on here for a bit and wow! this site is sooo different! I have been trying to research different places to get some help dealing with all of this tbi “stuff”. I lost my med. insurance last Sept., right before I was to go to a Neuro Clinic, with help for memory loss, cog. skills, etc. and finally getting an mri. Since then I have not been able to speak to any professionals about my situation. I have been financially struggling, esp. with keeping a roof over my head. I am also trying to maintain a home based correspondence course (hoping studying will be good exercise for my brain, eyes and hands working together) as well as give me a purpose. I have been looking online (when my vision permits as well as focus) for some kind of grant…wow there are so many scams that its sad…I apologize if my writing is not so well, today is not so good for focus and thinking…my tbi was feb 2016, and in sept I had first “mini stroke”,in Nov first “absence seizure”…these are frightening esp without med care. the course I am involved in is to obtain Naturopathic certificate, so I can help others as well as myself (also diagnosed with Fibromyalgia, and when had ins. looking into lyme disease).

Hey there, Gemini

I’m not a regular member of this group, but I do want to welcome you here! I think you will find good company and support from the folks here: they understand, because so many of them have been where you are now.

When you say this site is so different, what do you mean? I’m curious! We’re looking forward to hearing more from and about you!

Seenie from Moderator Support

Wherever you live trher has to be a state medical plan and you should have applied toi them for your disability back in 2016. Look up the appropriate agency online and get you paperwork in and find a disabilty advocate in you area if you can. some peoples SSI and SSDI claims sail right through. Mine took ten years witrh the next step being the US supreme court which my attorney was preapring for when Social Security gave up and admitted thrir wrong doings. IU wound uo getting more trhen 15 years of back payments…Yes you had better find an attorney that specializes in SScases too.

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I have to agree, get yourself an advocate or even better a lawyer. Initially my application for ssdi was denied, I appealed with an advocate and again it was denied. I also applied for my TPD insurance, the ins company were nothing short of B%$#@&*S. I then involved my lawyer, they took care of it all with the insurance company, I had to attend 2 dr’s appointments with the insurers medical assessors and I was approved. I then had the lawyer apply for all of the documentation from the insurance company and used those reports for my SSDI application, only then was my application for SSDI approved.
I also have to agree that the sooner you apply the better, even if it takes months to be approved usually they will backdate the payments to the date you initially lodged you paperwork.


Hi Merl,

I thank you for your response…I know it has been awhile since I was online. I had previously applied for ssdi through an attorney due to health issues back in 2014, then the brain injury added to it. I had found an organization that set me up with a neurologist appt. that was to be on this past wed. on tues. evening they had called to cancel it, and will call back when an opening comes up, which won’t be for another 6 months. In June I was reviewing my medical records that the paralegal mailed me for my disability hearing, which is coming up in Oct. After reviewing the mri I had (this dec. it will be 4 years ago) I came across some findings which do show a positive result on Lyme Dx. The doctors must have missed it. Luckily, at the facility which I go to for general care, a new pa started in July. I took the mri result to her and she knew exactly what it was. There is a Dr. from Hyde Park, NY who is very well known in the Lyme community, he has a youtube channel, as well as many books. He started ILads, to educate other dr.s all about the bacteria, the dx process, and the many other illnesses secondary to lyme that come from it. anyway, the pa happened to work with him, and i have been blessed. Prayers do get heard! Unfortunatly, I have had this dx for just over 20 years, so right now all I can do is try to manage the symptoms until I can see a neurologist…back to that. The lyme dx is the reason my brain injury is not healing. However, all of this coming together…in court for the disability case…I do hope for a blessing. Thank you for your response…and please say a prayer for me for the case.

Hey Gemini,
Lyme disease is one of those illnesses that dr’s like to debate, especially here in Australia. Some dr’s don’t believe it exists here, so if you’ve got a decent dr, stick with them. Like I suggested previously, if you can find an advocate who can speak the legal and medical jargon, use them. Trying to do it yourself is fraught with danger and if Social Security can find a loophole to deny the claim, they will. DON"T LET THEM WIN
Best of luck with it all and let us know how you go. Others maybe able to give you more advice.


Hi Merl,

Next week is my court date…my attorney feels good about the case…my new pa has been going thru all of my records, I was floored by how much the other pa had missed! MS, Hashimotos, some hsv-6 virus, Epstein-Barr…jeez louise…at least now I know why I generally do not feel so well…kind of have to laugh instead of cry…I am realizing that the TBI symptoms are not going away and finally accepting it. I am also now used to the isolation that comes with it. Its almost if the isolation has become my company…that sounds weird. I had a friend pick me up and take me to the shopping center last week and it was so overwhelming. I had a seizure while out and ended up coming home. The look in her eyes was too much …Pity is not empathy. Hope you are doing well…Our states medical coverage would not accept me, I have spoken with them many times. I did apply for the states disability program in March of 2016, and I am happy to say I was accepted last week. It only took 17-18 months…like I say,gotta laugh instead of cry! My attorneys paralegal has been a blessing…we have gotten to know each other through the many phone calls…she asked if I wouldnt mind her company at my hearing next week…she has actually called me to see if I knew of any programs in the area for some of the needs of other clients because I have researched so much in town. this area is lacking of many things that other counties offer. If I win a lotto I would def. change things for the better here.

Hi Gemini,
Well, at least you can say you’ve had ‘some’ progress. Not a resolution, but progress. If you have, in your possession, documentation stating these conditions keep them all, scan them so you have a digital copy and keep the originals. They will come very useful in the future.
I know that sympathy vs empathy vs pity, some people often don’t know how to react and show all 3 at once, when all that’s really needed is a bit of understanding. That laugh or cry should also include ‘scream’. Trying to get others to even just comprehend is exhausting. A big plus for you is having that paralegal, by the sounds of it someone who ‘gets it’.
As for your lotto win plans, I totally understand. The problem is that it’s only once you’ve had to deal with the systems do you find the shortcomings in that system. People outside the system have no idea how bad it is, how big the gaps are, nor the impact these failures have on the people who are in dire need of the services. They offer an inch of service when many need a mile and then by the time people come forward and ask for assistance, they don’t need it in 2-3months, they needed it yesterday. None of us ever plan in advance to have a brain injury, so making people wait just exacerbates the problems for longer. tsk
But we can only deal with the systems we have available and that’s a problem for sure.