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-   Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)
-   -   What to do? (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/232599-what-to-do.html)

CRPSsongbird 02-20-2016 03:26 AM

That's Awful!
 
Oh Purple
....
I do know your frustrations!! It's always lovely when no one can assist you with questions or problems AFTER you've paid and been on a policy that could be changing..... I qualify for 100% free medical from the "state" BUT they have control over what medications and treatments you're able to have access to. Like how they'll cover Narcotic meds but not Lidocaine Patches since I don't have "post-herpatic neuropathy...or how I can't get the compound pill only made by one pharmacy in town that isn't covered but IS only about $40 a month......but if I pay for it myself I'll lose my insurance.....ugh
HOWEVER...it's still better than being without any insurance at all with Crps which I had to do almost the entire first year I was dealing with Crps.....
Try to breathe deeply and let go for now. Unless you get a supervisor or something else to figure out what you need....
I had to SERIOUSLY change my reaction to stressful things because it would only serve to worsen my Crps.....ugh it is honestly "getting in my nerves"" ..grr
There are a LOT of more knowledgeable people here who might be able to help you more but I am here for you too! We all are! Let us know if you need support!!

PurpleFoot721 02-23-2016 01:30 PM

Finally some answers, sort of. We still don't know why my husband was put on Medicaid without applying for it and I was not, but when he called in to let them know what plan he was going to take, the specialist gave us some answers to our questions.

We are guessing that my husband was put on Medicaid when I called the Marketplace to change our address, which required us to fill out another insurance application, which raised a flag on our income level... Somehow, I just slipped through a little glitch in the system. That is just a guess though.

From the time my husband was put on Medicaid, we have 60-90 days to inform Blue Care Network and the Health Insurance Marketplace that he was put on Medicaid. We are allowed to continue paying for the policy that we have, but without any tax credits applied. That is something that we can not afford. After the 60-90 days, I will continue on our plan for one more billing period before I will have to call in to apply for Medicaid myself, or see if I can continue to slip through the system on my own plan. I am not counting on the latter though.

Anyway, I have somewhere around 90-120 days to determine if SCS will provide enough relief for me to have a permanent device installed. I am pretty sure that is more than enough time. I will find that out when I see my PM next week as well as what type of care I can expect if a permanent device is installed, if this is still the treatment plan that we are going to try, or if he would recommend another treatment plan.

catra121 02-23-2016 01:53 PM

Glad you finally got some answers and that now you have a plan on what to do with everything.

mama mac 02-23-2016 07:10 PM

Happy to hear that you have enough information to move forward with the SCS trial or another plan if recommended in your next PCP visit. Being snarled in a mountain of red tape is always stressful, but especially when you are in pain trying to sort it all out. I hope your visit next week goes well and your next phase of treatment can go into motion. Wishing you all the best. ~mac
:Good-Luck:

Littlepaw 02-23-2016 07:21 PM

Whew! Thank goodness for people who know what they're doing. I'm so glad you got some answers and can move forward with a plan. Hopefully everything will come together smoothly so you can get going on treatment. Let us know what happens. You know we're all going to be there with you during that trial.

:hug:

PurpleFoot721 02-26-2016 09:24 PM

It has been a tough couple of days. Wednesday, I had my psychological evaluation that is required before going in for the SCS trial. We had to leave at 8 am to make it there by 9 since we were having a winter storm that started coming through just as we walked out the door. It consisted of 344 mental health questions, followed by an additional 20 more questions, followed by more questions... and then an hour long interview. I was there for a little over 3 hours. Luckily, they did have a recliner where I was able to elevate my foot up for the interview, but not while answering the questions. Although that appointment was a little lengthy, it was so nice to be able to talk to someone about some of my concerns difficulties that so many of us are faced with while dealing with this amount of pain. If I feel like I need to talk to someone again, I would gladly go back.

I scheduled the evaluation so that I would be able to go directly from their office to my PM's office to take the required SCS class, which was just a couple of miles away. I don't really understand why the class is required. The instructors new very little, only told us the exact same information that was posted on the Nevro website and was unable to answer all of the questions that we, the students, had for them. There were about 10-12 of us all crammed into a small board room without enough seating for us all to sit for an hour. You would think that they would manage the number of people attending so that we would not have to suffer for an hour while they told us what we could have read on the manufacturers website. By the time we left the class, roads were salted and somewhat plowed but a little better than when we left.

Yesterday, I had another appointment, but this time with my disability lawyer. He was well prepared to have someone who needed to keep their foot elevated. We are not too thrilled with the ALJ that is assigned to us, but the I guess the occupational specialist is rather fair in how she proceeds. The lawyer described the ALJ as being an emotionless, heartless drone who would rather see nobody on disability. He basically told me my case could go either way but was dependent on how detailed I can tell my story. if I don't use too much detail, it will probably go against me. If I am able to be as detailed as possible, it should not be a problem.

All of this running around the last couple days, out in the cold and snow and unable to wear anything on my right foot at all, has left me in a lot more pain than usual. It was all necessary, but I sure did over do it.

catra121 02-26-2016 10:18 PM

Wow...that's a lot to go through in a short period of time but hopefully it was all worth it. Unbelievable how ill prepared they were at the dr and the SCS class when they are working with people in pain. Hope you recover quickly from the past few days. Take care and keep us updated.

NurseKris 02-26-2016 10:32 PM

Wow that sounds crazy! My appointment with the pain psychologist from arrival to end was just about an hour. Also I didn't have to take a class. But hopefully you can get your trial scheduled soon!

My WC lawyer is also helping me with my disability appeal. In the county I live in there is almost a 600 day waiting period from denial to hearing! I hope you don't have to wait that long and it goes your way.

Good luck with both!

PurpleFoot721 02-26-2016 10:46 PM

Quote:

Originally Posted by NurseKris (Post 1201538)
My WC lawyer is also helping me with my disability appeal. In the county I live in there is almost a 600 day waiting period from denial to hearing! I hope you don't have to wait that long and it goes your way.

Wow! 600 days. You must be on either the East or West Coast some where. I thought I had to wait a long time. Turns out to be just over 13 months from the denial letter, and almost 18 months from the day that I originally applied.

Thank you both.

mommystime2 02-27-2016 11:19 AM

I would make calls to insurance companies, there should be someone to help u figure this out, we did this and didn't pay anything, marketplace pays them. A licensed insurance agent for health insurance is best plan of action I do believe. Good luck


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