Appointment with Neurologist Thursday went well.
I shared I’m still struggling, I definitely have limits of only a half day now or I crash. I mentioned caffeine used to help extend my brain budget, now it is not working at all!
I talked also of the fight to keep my home and he asked if I’d filed for Disability. I said yes, it was the last resort. He said he tells everyone to file twice and if you’re denied then get an attorney.
I asked if that’s just the system, he said yes. He said with some things like MS even they’re denied. Some things like Lou Gehrig’s Disease when a person’s prognosis is death within a specific time, they’re usually approved right away.
He said the job of the attorney is to take the doctor’s notes and what I’ve shared and put it into legalese. That helped me realize I need to not struggle with this so much and leave it in the hands of the attorney. I said they’re kind of like interpreters, he agreed.
I thought it interesting every care provider has said the same thing of getting an attorney. I take that as a sign, even post-injury when I’m not as sharp, hearing things from three separate people, that’s a sign to pay attention.
I talked of my fatigue, struggling with work, everything taking so much longer and having to continually. He asked about my moods. I paused and said honestly I’ve been suicidal, just tired of the struggle. I said I wouldn’t do anything, I know better, but I’ve been here for seven years now.
I mentioned I’m living the typical Brain Injured life, I present well, but live as a shut-in, no social life, no friends, can’t handle church and the things I used to do.
He was really good at being clear on action items for me to do. Fortunately I took notes!
I need to find out the PIP balance and see if there are funds for Speech and Occupational Therapy, that will help me. He said the crashing can be helped by pacing and planning. Check into an attorney.
As far as socially maybe just the Brain Injury Support group is enough, maybe I will meet someone I can connect with and go to the park or something. I’ve not been able to do that thus far, but like he said, if I get on Disability that will help the financial strain.
I’ve sacrificed social interactions to protect the brain budget, to be able to keep the house and my job. I think everyone knows and sees how I’m struggling to do that more now than ever.
My heart has been aching for friends that won’t leave. I don’t think it is healthy to endlessly postpone this basic human need believing I’ll get better or things will get better “someday.”
I said things are strained at work and have been for quite some time, even though I work for friends. I’ve tried going through DVR twice and that didn’t work. (In my heart, I feel like a vocational failure).
He suggested we up my meds since I’m still on the lowest dosage and see if that doesn’t help me with energy, moods, and the ability to get to my appointments. He said I’m still in the early stages, emotional despondency is normal.
I told him a new injury was not in my plans AT ALL! He said there will be improvement, there will probably be a time when I look back and say, “I couldn’t have done that a month ago.” I said I sure hope so! He said even when people have their fifth head injury, there’s still improvement.
I think I’m beginning to accept the system is what the system is. As far as getting house help, or a miracle, I would LOVE that and am still trying to remain open. It seems in our world in order to get help you need a celebrity leading the charge or get your story in the news. With very limited energy it is tremendously difficult to continue to advocate for myself.
I have to focus on what lies ahead, taking care of the house, mountains of paperwork, attorneys, and, in many ways, reliving a lot of stuff I’d long since put behind me. Like a friend said at support group last time, a new injury brings everything back up. He was right; it stirs up everything that had been dormant for years.
Never thought life would turn this way, my biggest concern outside of losing my house and pets is losing my heart. I don’t want to be changed into someone I’m not or compromise who I am or want to be.
I don’t want to have to lie or cheat to get my needs met. If it means living with less, I want to live with a whole heart and spirit still intact regardless of the bitter cold storms and realities of life, human nature. Cheating the system means cheating my own conscience, no can do! Although I’ve seen those of supposed moral standards do that.
I think of that poem The Guy in the Glass. http://www.theguyintheglass.com/gig.htm
(‘Pelf’ in the poem means wealth and riches, especially if dishonestly acquired.)