In January when it was apparent things were not going to get better and I needed to be on hospice it was suggested that I have the Veteran’s Administration (VA) look at my disability claim. It seemed clear to all medical team members that the problems that started in my time in the military had progressed to this point. The paperwork however had not kept up and had me listed as MUCH less disabled.
This also meant that when I die my hubby and children would not get survivor benefits. My hubby would not be paid a meager, but livable amount if we are very frugal, to come home and care for me. Understand that he would be going from a Sr Computer job to a health aid overnight because of my medical issues. This isn’t an easy path. I was told by several drs, fellow vets, and some administrative people involved that reevaluation of my disability would make our lives easier.
IT DID NOT.
I was denied. Yes, they could see I was sick. Yes, they knew I was dying but…. insert a long line of reasons why I shouldn’t be allowed more disability resources. The problem is along the way several KEY dr’s letters and paperwork were not added into the claim. There was also NO understanding of mitochondrial disease. No understanding that it is a neurodegenerative terminal disease that could show as a dysautonomia (in my case Neurocardiogenic Syncope) years ago and continue to progress to the point of dying. The person looking over the paperwork said that it was not possible.
hmmm go to www.umdf.org or www.mitoaction.org and look under symptoms in the Top 5 on both pages. OR look up scientific publications for mitochondrial disease and you will see many references/studies that link dysautonomia and mitochondrial disease.
The paperwork said the average appeal takes 3 years. I am on hospice.
If you wonder after seeing my happy pics on Instagram or FB or even on the blog I am a bit self-conscious and don’t post the worst. I don’t even post the average. Today I am posting several average pics during the day.
As for health updates I saw the eye dr and he said that the extreme low heart rate and blood pressures that I am having are starting to damage my eyes. The periods of brighten out stars/blindness will continue and probably get more common. Thankfully I will most likely not go totally blind.
As for the low blood pressure and low heart rate that is causing that it can not be stopped. I have used every medication and treatment to try to bring up my heart rate and pressure. My cardiologist has released me from his speciality with great regret. He cannot help me and told me that I could very well die from my low bp/heart rate. Again this is directly related to the reason I was medically released from the military and put on VA disability.
I will continue to see my great set of VA drs. They support me and are helping me during this rough time in my life. I pray that this decision doesn’t somehow stop my hospice care, medical care, or prescription care especially since all my food (TPN) is considered a medicine.
I am not appealing yet. I am asking the West Virginia compensation team to look over my case one more time. I think they missed several key reports and letters due to the deadline requirements and (I was told) inability to ‘see’ my electronic files from Pennsylvania. I would like to think this is a simple mistake of haste and electronic miscommunication.