Sunday, December 18, 2016

My Traumatic Brain Injury, A Gorilla, and How You Can Help

It's now a week before Christmas Eve and there have been some improvements, some setbacks, and new developments as I teeter and tumble down this road of recovery. Since I last wrote, I have quit seeing the horrible program I vented about. I filed a grievance with them and chose a new medical system and a new Dr. So far, the new Dr. and her staff have treated me like a queen compared to the old place. They immediately made referrals to at least nine different Dr's and Specialists. Every interaction with them has been nothing but an experience of kindness.

The other week I went for an appointment and had a pretty long break before my next appointment. My eyes and head were hurting so bad, even with sunglasses on in their office. They offered me something for my headache (more like a migraine, they are concussion headaches) and then asked if I would like to just rest on the exam table like a little bed with the lights off while I waited for my next appointment. This might seem like no big deal but after the ridiculous treatment I had before, it resulted in me hugging the nurse on my way out. I thanked her for her kindness and for simply treating me like a human.

I am seeing someone for my soft tissue injury. I don't have a great way to explain it but it is different than muscle injuries. It's like a super tight band around most of my body that makes simple movements painful and quite an ordeal. This Dr. works on breaking up bundles of soft tissue in short weekly appointments. I yelled so loud on the first visit I was positive everyone in the waiting room could hear me. The Dr. said that means it is working.

To me it feels like he has a big nail that belongs in a wall that he is pressing down on as hard as he possibly can and dragging it across the worst areas. Insanely painful but the sessions are short so it is over fast. And temporarily it does seem to restore more movement to those areas but does little to decrease pain.

I still cry out when I get dressed and my feet still refuse to lift a normal height off of the floor (in addition to my horrible lack of movement and pain in my lower back and hips). I wake up so stiff in the mornings and then when/if that eases up it is continuous pain in my back, hips, neck, and shoulders. A lot of days the pain radiates down both legs and in my ankles. It isn't a pinched nerve type of pain. It feels like it is this awful aching in my bones. I cry out getting dressed and putting on my seat belt due to lack of allowed movement.

Showers are still a monster for me to conquer and I dread every single one. I usually sob during them from the dizziness, nausea, and pain of trying to reach and bend. I purchased a shower chair to help but I must have measured wrong because it won't fit in my tub. I hope to get a new one and a big handle to attach to the side of the tub to hold onto when I get in and out. My legs still won't lift high enough to clear the side of the tub but I have learned to angle them so they will.

After falling out of my bed yet again pretty recently, my Dr. suggested a small bed rail because it is just a matter of time before I break something or hit my head on my nightstand. I know I can not reach for things on the floor because my back can't pull me back up, but in the moment my brain forgets until it is too late. The small bed rail would prevent that and be a visual reminder.

I am looking at getting a home health care aide, because all these months later I found out on my own that my insurance will cover one to some extent. They can help with grocery shopping (a herculean task for TBI patients), meal preparation, and even drive me to my appointments... which would have been incredibly helpful before but at least I found out about it at all.

The brain app I have on my phone is encouraging. My scores from when I started using it daily to now have increased a lot. However I notice that games I was good at before are now some of my worst. My speed has decreased. There's still this delay in what I see on the screen before my brain processes it and responds. It feels like the slowest internet speed on earth. This happens online, when reading, and during conversations as well. It had improved but now suddenly it is worse.

I confuse my right with my left, get lost even with a GPS because of the delay I wrote about above, and have this increased anxiety whenever I go places, especially new places, that is worse than it was before. The drenching sweats still happen. I get tired easily and often find myself mentally and emotionally fatigued to the point that I can't hold a conversation. I just need to sit and be quiet. It still takes me several hours to vacuum. I do a little, rest for a while, do a little, rest for a while, etc. Every chore is divided into steps so I don't get overwhelmed.

Cooking is something I haven't returned to, although I did get crazy and make grilled cheese sandwiches recently. I put stuff in the oven, set the timer, and then space out and don't hear the timer and return to burnt food. One of my attempts to make a frozen pizza, for example, ended up in me burning through a few layers of skin on my wrist before I realized to pull my arm back, a little singed hair, and almost setting the trash can on fire.

My eyes still can't deal with light of any kind. I tend to spend too much time on my laptop or phone and end up pretty sick from it. Just pulling my curtains back in my dark bedroom a few inches makes me sick within ten minutes - severe eye pain (feels like the worst eye strain you can imagine), a headache, and nausea. So I still spend most of my time making phone calls, writing emails, working on my new little store, in the dark. It's comfortable of course but after 5 months of this it is getting pretty old. Driving in the sunlight, even with special sunglasses makes me sick. Being in Dr's offices or any store with lights makes me sick.

A few days ago I fell in a business parking lot while walking back to my car. I luckily wasn't hurt and did not hit my head - but my head could have gone without the jolt. I sat there for a couple of minutes with my brain completely silent. It was like someone pressed the pause or mute button. I stared around, confused. Finally I realized I needed to get up. Then I had to figure out how - by placing my hands on the ground and standing.

My memory, which was diagnosed as Post Traumatic Amnesia, still requires me to write down every single thing. If I want to Google something later, I have to write it down. Often I don't write it down fast enough and it is gone. I have a hard time with names. Not like the usual, I can't remember names, but to the point where I can see someone a couple times a week for months and still have to guess their name. It's frustrating (as is a lot of this) and makes me feel ashamed. I forget faces within 30 minutes or less. I stumble with my speech and word finding. I forget to eat. I forget to get up and go to the bathroom. I often feel like a confused, lost little kid. I forget simple things that I have always known.

I know my IQ has not recovered fully. But at the same time, I'm still in here, and I know that I am not stupid. I have forgotten a lot of very simple things I used to do as part of my career and other memories pre-wreck. This awareness happened fairly recently and was upsetting. I thought my memory issues were all short term and after the wreck. Now all of a sudden the issue extends to before the wreck. Where there was once knowledge about things, there is this vast nothingness. I get scared and worried that I might not recover more, because that is completely possible.

I sit and think, "Is this it? Is this the new me?". And it is almost too much to contemplate. 

My creative writing skills pop up very rarely. That's why I have so little to say of any value on Twitter recently. This worries me, the loss of creative words and expression. There are other things, but I can't remember them right now (ha!). I know I read that symptoms of a TBI can show up months later and I believe there have been a few to surprise me recently. This worries me too.

Recently, after realizing there were five online shops out there - with the logo I created almost seven years ago for my blog - being used to sell merchandise... I decided to have those taken down and then start my own store (visit here: http://www.cafepress.com/ssparklesdaily ). It's a way for me to help myself prolong my homeless countdown. I have uploaded two different quotes/designs so far on an incredible amount of products. Only a fairly small portion of the proceeds go to me but it's something. As of right now I have sold only a couple of items. It might be a gigantic waste of time but at least I am still trying.

There's so much unknown with traumatic brain injuries - how long it takes to heal because it varies by person, what side effects will be permanent, and how much a role my previous head injuries play into what I am dealing with. I know they definitely add up, just look up "CTE" or watch the movie "Concussion". While CTE often focuses on football players and other sports figures, information regarding its existence in soldiers and survivors of domestic violence has begun to be more widely discussed.

I made a list recently of all of my possible and definite concussions since I was a kid up until now and the total was upwards of fifteen.

Last night, while trying to fall asleep I began thinking about a gorilla at a zoo I once frequented. I could stand there and watch him for a long time. He would sit there in the grass looking right back at me with these soulful sad eyes that had me mesmerized and occasionally made my eyes water. He was magnificent and full of strength and beauty. I always wondered what he was thinking as he sat there. Was he content with his artificial life in an area he lived in alone? Did he know that his life wasn't how it was supposed to be but had no way to change it?

I'm not sure if it makes sense, but I feel like that gorilla lately. I remember life before my TBI. I can feel the change. I see people look at me like a curious, odd, out of place creature. I have people respond to me like one as well. I feel on display at times.

My mind is this artificial environment that is me but isn't me. It's not how it's supposed to be and I live here alone, unable to change it. 

I have had unexpected expenses and new ones with the need to purchase things to make my life easier and safer. I am still looking at March being the start of my homelessness. And as that month, my birthday month, inches closer and closer, the more stressed and worried I become. Some of my Dr's I won't get established with until January and February and their follow up sessions will likely be at least once a week for a few months.

As always you can donate via my GoFundMe page created by my best friend: GoFundMe

Or via the secure PayPal buttons on this site. They are located in a few locations and are yellow buttons that say "Donate". Easy to find on a PC. To find on a mobile device, click on "View as
Mobile Page" at the bottom of this article.

If you'd rather shop for you or someone else and get something tangible in return, check out My Little Store.

If you can't do any of the above, tweeting this article as often as you feel up to it and encouraging others to do the same is a huge help. Feel free to share on other social media sites like Facebook.

Thank you to those of you that have donated so far. To those that have reached out with kind and encouraging words. To those that continue to check on me over the past 5 months vs those that don't because they think it is all bullshit or like a cold that will just go away.

Many don't understand traumatic brain injuries. They think of concussions and assume I should be better by now. When this first happened, I thought the same thing. But that's not how it works for millions of people each year that end up permanently disabled, never recover fully, and the heartbreaking large numbers of those that do end up homeless or committing suicide.

If this doesn't work out or some kind of miracle doesn't befall me, please know that your efforts were not in vain. You kept me going for almost half a year. You lifted me up enough to give me the energy to keep trying. And I am grateful in a way that I don't know how to put into words.

Until next time.

Love,
Stephanie


My gorilla and my awful attempt at a photo of him.