Anatomy of a Rini

I have learned something--while I don't notice the braces, canes, good days versus bad days etc., other people do, and find it confusing.

What can I say, I am a Mud skipper! Some days I feel like I can do anything, other days, I'm sore, tired, and out of it and simple tasks are a doozy. It's actually normal for people with TBI to have fluctuations, even after a good recovery. Health changes, and abilities decrease, then go back to being ok again. Even an infection causes a relapse of TBI symptoms for a time.

To me, these fluctuations are no big deal, frustrating, but not life-altering. However, I am learning other people find these fluctuations overwhelming, to the point where a few people I thought would be my friends, forever, told me they thought I was faking it.....and now, we are no longer friends. They made up their minds, doesn't matter what my doctors or I say.....according to them, I don't need the cane (prescribed) or the wheelchair/powerchair (prescribed).....please note, none of them are doctors or have read my doctor's notes.....

I don't usually talk about this stuff. Things change at the speed of light, I can't even remember all the details anymore! Even though I am only 27, my doctor says, I am getting old early. A paradox in someone as young as me....but it happens from some kinds of injuries and insults to the body. Also, I don't want anyone to think I'm complaining, or whining, or want attention--I try to look normal, I try HARD. I don't define myself by all these details, I just find a solution and it becomes part of my routine, so I don't think or worry about it. But because I look normal, people think I'm faking, or wearing braces etc. for attention. I don't want pity, I just want to live my life the best I can. My 'gear' helps me keep moving, and gives me the freedom to work and travel, etc.

I have a lot of equipment, but that is so that I am ready for anything--good days and bad days, so I can go to work, and get out, socialize, get more education, and enjoy life. It might not always be 'pretty,' but I make it work. I'm getting out there, working, and living my life. (Thank you, Scott, for that insight!)

So, bearing that in mind, I decided to do a brief synopsis of the unique "Anatomy of a Rini" to maybe prevent future heartache.

In the picture above, you can see I wear braces. I don't 'see' them because I put them on like clothing every day. It's routine after a while. The black sleeve on my left shoulder that wraps around my chest, helps to keep my left shoulder from dislocating. I have "laxity" in some of my joints, meaning they slip around/out of place easily. This can pinch nerves and be very painful. In addition, if my shoulder slips downward, it pulls hard on my neck muscles, which then spasm, and I get bad migraines. Sometimes, the braces cause their own problems--overall they help, but I've gotten pressure sores on my arm, and the weight of my left arm being supported on my right shoulder, irritates a nerve that makes the right side of my chest and right arm numb.

My trunk muscles are weak, and as a result, my posture is poor. Especially when I get tired, it's hard to hold myself upright. I can't do physical therapy for my trunk right now, because it causes problems with the spasming that affects my breathing, and irritates some of my nerves as well. The hard backed brace that has straps like a backpack keeps my shoulders back and helps me stay upright, and keep good postures which helps the pain from the degenerative disk disease in my upper spine. Degenerative disk disease can be very painful. I have some arthritic changes in my low back, and in my upper spine, the disks are damaged, so there isn't the natural cushioning between the bones. It's usually not too bad, but if I am standing for more than a few minutes, or do something too physical, it can get bad. then I need pain medicine for a few days until I feel better. Using a wheelchair or power chair helps me avoid using pain medicine if I am going out for the day and would otherwise be on my feet a lot.

I have to carry an "ambu bag" with an adapter, because sometimes I get bad muscle spasms that wrap around my back and chest like a boa constrictor, making it hard to breath. Sometimes, this has gotten very bad and I've had to go to the emergency room. Since I started using the ambu bag to stretch my muscles around my chest, and get enough air, I have not had to go to the ER for my breathing. I also get steroid shots every 12 weeks into the 'paraspinal' and 'intercostal' muscles, and may be getting botox, soon. The spasms are the reason I need to take muscle relaxants frequently.

My doctors say its episodic spasticity, resulting from tiny scars in my brain from the head injury. I've also been told that some areas in my brain, like the area having to do with motor (movement) have shrunk a bit.

Because of the accident I was in, one of my hips got shoved back, my pelvis sort of twisted. This makes my right leg shorter. I wear a thicker shoe on the right side, which helps even out my walk, making me more stable, and reducing the pain in my knee, hips, and low back that would otherwise get severe from walking crooked.

I use oxygen, to help with pain and to relax my muscles. It helps.

I have to take medicine to help with the fatigue that comes with head injuries, so I can focus better, and do well at work and in day to day life. I find the fatigue, which impacts my ability to think and learn and even talk, to be the worst part of having a TBI. (other than the migraines!)

I have to wear a neck brace, sometimes, since the nerves in my neck sometimes get pinched. I also have a special bed for when my breathing or shoulders get very bad, and I can't sleep laying down. I wear compression stockings to help with some 'mild venous disease,' and a vascular abnormality (thankfully functional!) in my legs. My legs discolor, possibly from my spine or from mild venous disease.

My computer has programs on it, so I can talk to it if I am having problems typing, and it can also 'read back' information to me. This helps me keep my thoughts organized when I am working on something complex. It helps me communicate better, since I have mild, but at times challenging problems communicating effectively. It also is a great proof reading tool!!!

I have intermittent problems with the nerves in my arms, which make my hands clumsy. I can't use a manual wheelchair much anymore, and had to get the power chair, because of those problems. My left wrist dislocates from damage to tendons, and I have to wear a brace on it to lift/do anything strenous. If it gets worse, the doctor could 'fuse' the bones, but I'd lose a lot of use of my wrist and thus hand/arm, so I don't want that.

My wheelchair and power chair let me stay out all day, and take a break from pain medicines.

But, to me, all these things don't mater. The clothes don't make the man, and the adaptive equipment does not make the woman.

I have TBI, I have laxity in my joints, I have a touch of arthritis, I have breathing problems, my doctor still thinks I may have a muscle disease, too, though I don't think so, but I am OK!

I have good days and bad days, but the tools I have allow me to keep going no matter what, and get out about and live a good life.

And if anyone thinks I'm faking it, well, I don't think anyone could be THAT creative, LOL!

And while I wish I didn't need any of this, I've learned to rejoice in the fact that the tools let me live a good life and have a good job and spend time with people I care about.

It's like having a dishwasher instead of washing the plates by hand.

We all have a choice, I choose to rejoice that I have the tools that I can manage any day, whether this mudskipper is swimming, or walking, or running about, I'm good.

Life's good.