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Old 02-04-2017, 11:20 AM #4
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Living_Dazed Living_Dazed is offline
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Join Date: Jan 2013
Location: Great Lakes area
Posts: 409
10 yr Member
Living_Dazed Living_Dazed is offline
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Living_Dazed's Avatar
 
Join Date: Jan 2013
Location: Great Lakes area
Posts: 409
10 yr Member
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Hi Mark, Nice to see you are still educating others and taking care of yourself. Hope you find your piece of land soon.

I work on my sleep all the time. I have not found that great spot yet. Stress, overstimulation, and pain play a big role. However, it's a process.

I do take breaks. Sometimes my warning signs come too late. Also, some days I can do the same things and have opposite effects. That makes things extra sticky.

Over the last 2 yrs I have seen a handful of new neurologists. One told me that it was all in my head. That neuro fatigue is non-existent along with things like MS. I walked out of that appointment into the cold. I contemplated continuing straight out into traffic. It was a low point. My mother and husband left the appt too after a few more minutes. They were able to calm me and get it through to me that it's the doctor. I know it's the doctor...i think that aspect is what's devastating.

I know my body, brain, and character. Who would choose to live a life like this? There would be no way to fake this life for years. The daunting task of finding a doctor that says, "Jenna, I know exactly what you are living. It's sad science hasn't nailed down what is happening in the brain to cause this fatigue after a TBI. Let's try to find other ways to make life work for you. I will continue to look for new treatments and in the meantime I will monitor you." That is my dream doctor...long with the ability to get rid of my body pain.

I've given up on local support groups. Did that for two years. It's hard with people like us. We have personality issues. I just don't have energy needed to sustain those friendships.

I still love my studio. It's my favorite place to be in the house even if I am just sitting here looking out the window. I am open to an hobbies, especially ones that don't tank my energy and I can really get going on it.

What hobbies are you up to? What are you wanting to do in your future studio? Our new lot has an existing garage on it. It's along the back lot line dead center and in need of a decent amount of tlc. It's a double wide. I am not sure if it can be salvaged for a studio but i am hoping.

It's a cold day here in northwest indiana. no snow, no sun. Cat lis lounging on the heating pad here on my studio tables. she hasn't done much else since I put it up here yesterday.

Be well. I think I will hang around here for a while this time. It's comforting to be with others that get it.

Jenna
__________________

.


*TBI with mild to severe damage November 2012 from car crash. Stroke with hemorage & 4 clots in veins in brain Feb/Mar 2015.

*Vestibular damage, PCS, hypercusis, severe visual processing and tracking issues, short term memory loss, headaches/migraines, occipital neuralgia, cognitive issues, neurological issues, brain fog, brain fatigue when over stimulated, twitching, vertigo, neck issues, nerve issues, PTSD, personality change, Since stroke left side weakness, rage, worsening of vestibular problems, recall, speech, memory.

*Can't drive or work. Have done occupational therapy, cognitive therapy, physical therapy. Learning work arounds, and strategies to be competent in daily life. Change your attitude/perspective changes your life. As TBI survivors this is a vital part of our healing and living.

*Working on getting to know and accept the new me.
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