I've been gone for a long time on here. My name is Jenna. I hit 4 years on November 21st 2016. I'd love to say I am healed and the emotional struggles are all gone but that is my fantasy world.

My biggest symptom is the visual processing and auditory processing that tanks my brain. The neuro fatigue is a killer. It keeps me from participating in life. Simple tasks take me down quickly. Reading from a book or magazine is out. Small, short, non cluttered text without too much detail is good. Movement, sounds, visual stimuli, crowds are very hard. I get vertigo immediately in dim light and darkness. So all that puts a damper on many activities in life. I have a host of post concussive symptoms still...oddly some just seem to be who I am anymore.

My processing is diminished. I hear things, talk about it, think I understand it and then hours, days, weeks, months, yes years later it hits me like a ton of bricks and it makes sense finally.

I have tried several meds to up my processing...nothing has worked. I had a stroke in 2015-cerebral venous thrombosis. I was diagnosed with a possible blood disease, antiphospholipid antibody syndrome. They can't be sure because the test is not accurate when you on a blood thinner, which i'll be on for life. The hematologist thinks the car crash and subsequent brain injury played a role in the damage of the veins in my brain but there isn't much research on venous strokes two years after TBIs.

Living with my symptoms after the crash and the change in them after my stroke I would say it definitely played a role.

I am limited in my life. Exhaustion is no longer just neuro, it is also my body since the stroke and I also have all over body pain now too. I work on staying positive as much as possible. When fatigue hits or body pain, it does bring me down. I keep telling myself it will pass and my disposition will change. It always returns to positive. My flares can last over a month. It's rough...but I am very fortunate in that my husband is a gift from God, as is my mother and extended family. I have great friends too. My long term disability saved our finances and it makes up what SSD doesn't cover till I am 65.

I have hobbies, and a beautiful studio that my husband built and lots of materials and things to do. It all is challenging and requires breaks. my brain can only do so much at a time. My interests wax and wane and my focus doesn't seem to last long...very frustrating. I just got into crocheting, but after 10-20 minutes of it, my brain takes a dive and I am done for a day or two. The neurofatigue is better than it was in the begging, but it's leveled out over the last two years and is still very profound.

I still see my neuropsychologist, the doctor I feel has been the most valuable since my TBI. I have given up on finding a neurologist that 'gets' it. I have seen local, and been to RUSH in Chicago. All I have found has been lots of testing, lots of bills, some judgment, some honesty of a dr not knowing what to do, and acceptance that there is no cure. I have a new primary care dr that my husband has seen for 3 years that I have moved on to...he has my records and has accepted my case. If he can't help me he said he refer me out. At this point I think it's just managing me and making sure the rest of me stays healthy, which I work hard at doing.

We just bought some land and will be building in a year or so. A ranch, and my mother will have an in law suite. We will be about 500 ft from a great lake, in a great town. I taught here and loved working with the kids and parents. Many have become friends of ours and my kids find me on FB. Not working is like cutting off my oxygen supply. I often think why me? Why not someone that would want to be home and do nothing? Why take me out of the game? I loved working, volunteering, and being active in life. Why me when I was making a difference in this world?

My blessings are great...but I am still a shell of who I used to be and my satisfaction in life is low. Even being 4+ years out I still consider myself at the beginning stages of this journey. I have a lot to accept, lots to learn, and a new life I need to create and find joy in. It's an uphill battle. My soul aches beyond words at times and I battle with reasoning staying in this life.