My TBI happened on the job. I know a lot of people who joke at work ‘yes hurt me I’ll get a few days off’ I would not wish this on anyway. I have to follow the Worker’s Comp rules. It took two months for the adjuster to agree to let me see a neurologist. More than five appointments have been made with different neurologsts. The adjusters keeps deciding she does not like the doctor and cancels the appointment.
I finally was able to see a neurologist in October. I had two appointments with her before the adjuster pulled the plug and moved me to a new doctor. I saw this doctor for the first time on Monday. He told me he wished I had gotten into him sooner and told me to stop doing anything. I no longer am allowed to drive, go to any department or grocery stores, no crowded restuaraunts, he told me to do nothing.
He also gave me two meds and an supplement. The supplment I was told could only be bought in the doctor’s office. I wasn’t so happy about this because it seemed a little like a money funnel. One of the meds he gave me is a low dose of something that is also used to treat depression. I have taken enough anti-depressents in my life to know that I react horrifically to them. I either land in the psych ward because I want to kill myself or am hallucinating. So I opted to not take that one. The other is Prednisone. About 1.5 hours after taking the first dose I broke out in a rash. I called the doctor’s office and the receptionist said she would talk to the doctor and call me back. She never did. I took 50 mg of children’s Benadryl and spent the rest of the day feeling like I had gotten way too stoned. The rash is mostly gone though. Next week I will be doing an EEG. Worker’s Comp will have to be convinced to pick me up and take me since I can no longer drive, the office is over an hour away.
My family is encouraging me to see a neurologist outside of the Worker’s Comp group to get an unbiased opinion. Since I no longer have my job I have to find new insurance before I could do this. Between Worker’s Comp and disability, I may too much money for state insurance so I have to pay into private insurance. It will be cheaper and a plan my therapist takes at least.
I don’t think I will be using it to see a different neurologist though. I have been bounced between doctors and made to feel like a lab rat or that I’m lying. Their treatment ideas have given me terrible reactions. All the doctors I have seen so far have told me that the best remedy is time.
So instead of more doctors, more set backs, more bad reactions, I will give myself time. I will pick quality of life. I am picking me. When I am able, I will do things that I enjoy, I will figure out how to live this new life as best I can. As joyous, happy, and free as I can. Not driving is going to make this even more isolating. I have technology on my side though, I can video chat, maybe learn a new skill.
I have recently discovered the value of meal kit delivery. Having an account with Home Chef has given me some freedom I didn’t know I needed. Before, I would end up sobbing on my kitchen floor staring at the food because it was 7pm and I hadn’t eaten yet so I was hungry, and so tired I needed a new word for tired, and trying to make the choice of what too eat was impossible. Now, I have food delivered to my house, with pictures and instructions on how to make it. It has been a life saver. Making something beyond cereal is now possible. I can make myself food with fresh produce and it is even hot! I also can have the satisfaction that I was able to do this for myself.
My life may look so different now. I get so frustrated at lot of the time. It gets even harder when I haven’t gotten something done and my parents say ‘why haven’t you done this? You aren’t doing anything else’. That hurts and it is not true. I am healing. I am reworking my entire life. My entire view of myself and plans for myself. I get hard on myself too. I feel like I should be able to do so much more. I have different needs now. Different does not mean I can’t do something though.
