Disability Drama...complete

[Becia]

Sometimes the thing you want to hear, is the hardest to process once it's out in the open.  Seeing something in black and white, in your hand, can lead to a mixture of emotions.  Do I feel jubilee?  Or is this disparity?  

My disability was approved.  Not just approved, but FULLY approved (or "fully favorable" in SSA-ese) back to July 22nd, 2013.  It's got some crazy talk in the decision process making that has me extremely freaked out, but I'm trying to not focus on that.

Just like when I finally received a name to everything I experience, the POTS and the Ehlers Danlos... It's officially a mixed bag of tears and now intense pain from everything of today, tears of relief and tears of uncertainty.

I'm currently on my third nursing home/in patient intense rehab stay.  I opted to go back to the same place I was in last time, since I had a great experience there with people being willing to learn about my conditions and how better to care for me when things get insane.. While I wished I could stay in home, I know I couldn't secure the needed help to make being there when I'm having an intense crash, a safe experience.  Plus, the physical therapy group is outstanding, helping me secure braces for my joints, allowing me to customize my time to focus on things I would be doing at home (such as cooking, cleaning, etc), to figure out how to change how I do pertinent activities for living.  Out of all of us in the "Fast Track Rehab" wing, I know I have a harder time of securing help at home compared to the rest of the clientele, usually jsut based on my age alone (I'm the "baby" here at 34).

I honestly have spent so many days and sleepless nights, so many doctors appointments, therapy sessions going "what happens to me if I'm denied again?"  I was trying to figure out how could I work, even though while going through the hearing and hearing the hypothetical situations the judge and the job expert went over, said that I wouldn't be able to.  What has me a bit concerned is one single sentence that says that improvement is expected with appropriate treatment, and to review in 24 months.  According to my doctors, I'm at it, and I'm still having many issues.  But I guess figure that out when it comes to it.

its just been one wild time.

[corina]

I hear you Becia, on everything you wrote. I hope and I know from experience, in time you will feel better, tears will dry and you will be able to make new plans. I so hope you will be back home soon being able to do the things you love most. Warm wishes

[angelloz]

Congratulations! Yes, a mixed bag but a blessing too! Don't even worry about the 24 month thing. Once you have disability it is much easier to be renewed. Illness is so difficult, there is nothing easy about this whole ride but every day is new. I am sending good thoughts your way!

 

Edited April 28, 2016 by angelloz
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[Guest KiminOrlando]

Hi, Becia. I'm sorry to hear you are having such problems and hope you get to a point where you can go home and manage. I too became fully disabled at 34, and honestly, it was a relief. I had to hire an attorney and it took over 3 years. That was over 10 years ago. It is my understanding that a 24 month review is pretty standard. I have gone through several of them and I remember how stressful my first one was simply because of how hard it was to get approved. (I had to schedule a bench trial with a judge.) What I will tell you is to keep a log of what doctor or other medical professional you see and when. Any phone calls about medical stuff, even insurance and prescriptions. My review forms wanted 2 years worth of dates and where I went on vacation- like I had money or energy to take a vacation! Once they realized my life was really about managing my illness, they approved me without question. I make a copy in case they call me and ask me questions about it, I will know what they are referencing. I fill out way too many forms about my health these days. I continue to do this every 24 months.

I hope you feel better and I hope this takes a little of the stress out of the review process.

[dancer65]

I am sure this a relief for you and I hope you get better soon and can return home 

best wishes 

[Becia]

Thanks Kim for the idea of tracking for the review! I hate not knowing, so I'm already nervous about that and it hasn't even occurred yet.  I'll start a new tracker on my computer for this.

 

and thank you everyone for your kind words.  I've had a few days to destress about it (and replaced that stress with fighting with a doctor apparently) and am beginning to feel a bit better about it.  Still a bit of a mixed bag, but getting better.