Wednesday, August 26, 2015

Ataxia, the slow and silent destruction

Fact- Some things will never get easier, but that doesn't mean that it has to rule my emotions and how I take on each day as it comes with its own set of difficulties.

This morning, I spilled an entire glass of cappuccino all over my wireless keyboard *which was a gift from my Mom and Dad after doing the same thing on my laptop - which amazingly didn't ruin the entire machine!*...

I was SO upset that I could have actually punched my desk... but I didn't.

It doesn't seem like that big of an accident to most folks, but to me it was yet another frustrating reminder that I do in fact have ‪ataxia‬ and that it is affecting my hands and how well I can grip objects.

I live through my hands - as an ‪artist‬, ‪photographer‬ and tactile enthusiast.

Most of us take for granted how often and for what purposes we use our hands all day, every day. For me, it's a grim reminder that these ataxia ‪‎symptoms‬ will continue to decrease my abilities and that it will continue to increase the limitations that I'm already unwilling to accept.

For those of you whom don't know me very well or haven't known me very long - I'm an EXTREMELY patient human being. I don't mind waiting, and in fact, I find that slow anticipation is often very well worth it in the end. However, I get REALLY angst-ridden by things that limit my abilities, my options, and mess with my creative outlets.

My creativity is a HUGE part of my healing process, and without being able to do all the things I enjoy doing and find healing from doing - - - I get angry. I get sad. I get disappointed and down on myself. Things I cannot control are often the hardest things to 'deal with' emotionally. My logic and my emotions are in an immense battle right now about this, and it's really hard to just "be" with it, or to accept it.

I'm working on it, and there's only 'so much' I can do about any of it. Logically, I know there's only 'so much' I can control, and the rest I have to fight myself internally in order to just 'accept'... it is NOT easy, but I'm using ALL of my willpower to do my best to.

In life- There's 90% circumstance, and 10% reaction.

I have to purposely choose to react in a constructive way, otherwise I'm actively being destructive to myself about my situation and my brain damage.

Being optimistic and upbeat takes its toll, and is almost never easy when it comes to things so life-affecting. I do try my very best to keep being positive, but some days I feel like saying "eff it!" and just be angst-ridden and full of despair. I feel like sometimes I just 'have the right' to be angry and upset.

I don't want to end up in a wheelchair and not able to use my hands. I don't want this brain damage, *ataxia*, or amnesia, but it's what I'm living with; eventually I'm going to have to just 'be okay with myself' and learn how to live with it.

Today isn't exactly 'the day' for acceptance --- but maybe one day I'll learn how to.

I've already accepted SO much - that sometimes when MORE stuff comes on top of it all I just feel like breaking down and having thee most epic hissy-fit and pity-party the world has ever saw.... but - I compose myself - sometimes HOURS later - and just roll with the punches life throws at me. 

Yes, it's okay to be upset and angry about things that I'm not ready to fully embrace - but it's NOT okay for me to beat myself up for things I have no control over. Today I'm realizing this all over again - and it's a harsh feeling to know there's only 'so much' I can actually control. 

It makes me feel small, helpless, and alllllmost hopeless.

BUT - having stated that - I do know that I have to adapt to survive, and eventually I'll figure out how to do so about all of this. So far, I've done a fairly good job at adapting in order to survive what I live with. So far, I should be content with the fact that I've done so well, and that I will likely continue to do well to adapt to whatever comes my way.

I have to give myself credit where it is due, and stop attacking myself as if I had something to do with what's going on. I don't. 

It's not my fault I was injured, and it's not in my control how quickly I do or don't heal. I just have to learn how to not be so damned upset and to truly find a way to anticipate these things. I do anticipate things changing - that's a give in - but I never expected things to change at the pace they have been, and I think that's where all the 'shock' and 'angst' comes into play. I think that's why it feels extra-harsh. 

Now that I realize that, I can more easily adapt and accept things as they've now proven to have become. Easier said than done, but I'll get there.

I have come to embrace my anger and outbursts of disappointment and am learning quickly how to let it all go. To use it as a tool for processing what I'm going through. 

It's tough sometimes to really embrace that there's huge things in my body that I cannot control, but I'm figuring it all out. I'm learning how to use my emotions constructively instead of allowing them to destroy me and my intentions for myself and my future. That's why I say "I'm working on it" because it's a constant battle of my whits and sensibility. 

I know logically there's only 'so much' in my control, but emotionally I feel raw almost all of the time. Being honest with myself is a huge blessing, but feeling so intensely kind of trumps my logic sometimes. It's a balancing act that I'm learning to maneuver through.

There are very few things in my life that I won't accept graciously, but ataxia just plain sucks... it's one of those diseases that slowly deteriorates abilities to grasp objects, to stand up and walk without falling, to swallow without choking, etc... eventually, everyone with my type of ataxia winds up in a wheelchair, unable to use their arms & legs correctly, and have a feeding tube so we won't choke by attempting to swallow. 

It's scary. 
It's not something I'm looking forward to. 
Declining into it is something I'm trying VERY hard to fight. 
That's the truth of it. That's the reality of it. 

I am not focusing on what WILL happen, but instead on the here and now. When I DO think about what WILL happen, I tend to freak the heck out and scare myself - - - which is destructive and not healthy. 

Yes, I have to accept that it eventually will occur, but I have to force myself not to borrow tomorrow's troubles today.

***Thanks for reading! --- Until next blog...***

Sunday, July 12, 2015

What most people don't know about being a good patient - and how it hurts them...

You might not realize this, but being a Dr's patient means that we have to provide them with enough information in order to be diagnosed, treated, or even heard. We're essentially consumers, and they're providers of services and goods... all be it, medical treatments and medications (if needed - and the correct ones!)

It could be compared to joining a dating site but not filling out all of the vital information in which to find a proper date.

You cannot go in to your Dr and simply say, "I can't sleep, have no appetite, and get dizzy." You have to give them parameters in which to gauge not only what is causing it, but when it is happening, how often, under what circumstances, and then judge by their medical knowledge ALL of the many things that it could be related to - way before diagnosing you or ordering the correct tests for what you're going through in order to even start any sort of treatment plan.

"I can't sleep" could mean many things. It could mean you're having trouble falling asleep or staying asleep. It could mean you have insomnia. It could mean you have restless legs syndrome or neurological distress like 'anxiety', 'panic attacks', adrenal issues, etc.

"I have no appetite" could mean many things. It could mean that you're more often than not, not hungry. It could mean your taste pallet has been altered and you no longer like the foods you're used to eating. I could mean that you're having intestinal or stomach pain or constipation.

"I get dizzy" could many many things too. It could mean that you're having vision issues, ear - nose - or throat inflammation, or even neck bone or shoulder muscle pains/swelling. It could also mean you're having vertigo - which is not exactly the same as dizziness.

Many traumatic brain injury survivors (as well as post-concussion survivors) have many similar symptoms but cannot accurately describe when/why/how often/ or what is causing them. It is impossible for our Dr's to know exactly what's going on with very vague information that we can give them.

With amnesia (or any other memory loss issues) it is VERY hard to keep track of even the most minor to major issues we keep having medically. Even more so, it is harder to accurately describe how our lives have altered due to the medical, emotional, and day-to-day changes we've experienced and are still going through.

In short, our medical healthcare providers can ONLY do their jobs with as much information from us patients as possible. This is true for medical care, psychology, psychiatry, physical rehab, and so many other forms of the medical fields we utilize to improve our overall health and wellness (aka: our quality of living life.)

I'm working really hard - even with amnesia and post-TBI issues - to create booklets for us patients to use in conjunction with our healthcare providers and care-givers/loved ones. These booklets include daily "charts" in which us patients can fill out in real time (as things are happening) and then share them with our Dr's, nurse practitioners, and care-givers in order to have a complete and accurate account of what we're living day-to-day. You know, the things that are impossible for our Dr's to witness themselves.

Without this vital information, it is not possible for our Dr's to create an accurate diagnosis - which means we won't get the treatment plans we need in order to improve our lives, take back control of our health, and to move forward into managing our daily lives while improving.

My biggest challenge with my Dr's has been lack of ability to give them clear information. By the time I get to see my family care Dr, I've lost recollection of what I needed to convey to him. From that, I'm not getting the right diagnosis or treatments in order to improve my daily-life situation and the issues involved that he could and would help me with. Slowly, over the last (almost) two years, I've finally been able to give him enough information that he's now able to run the right tests, refer me to the right specialists, and truly knows how much my daily-life has been altered due to the symptoms I'm dealing with all the time... and how they revolve and change.

I fear, that if I cannot provide this booklet to other patients going through the very same things I'm going through, none of us will see improvements, hope for a better and more manageable daily life, or any sort of productive changes.

I've started t-shirt campaigns in order to fund not only the last bit of dental help I need (in order to stave off infections from the teeth that broke from my accident that caused my brain injury) - but to pay for the costs of the booklets to be printed and delivered to every single patient like myself whom truly needs them in order to improve their medical, mental, and daily-health.

I didn't get a manual with my head injury or amnesia. I didn't get any real or valid advice on how to get better. With this booklet, patients like me can have an actual fighting chance at improving their lives. I cannot drive anymore, hold down a regular/typical job, nor can I find "work at home" that is legitimate or fruitful.

MANY patients are NOT lucky/blessed enough to have generous parents whom are able to not only house them, but feed them and take them to appointments and encourage them to keep moving forward.

MANY patients get stuck, get worse, and never return to any state of healthy normalcy.

I refuse to sit idly by and watch this continue to happen to people who never asked for these injuries or side-effects (life-long effects in most cases) and do nothing about it when I have such a great idea of how to help them to help themselves.

Please, if ever you could open your minds to something you're not living through, open your minds to this. People living with brain injuries and amnesia cannot control what they're going through on their own. They cannot improve their situations without guidance and long-term help. This booklet can open the floodgate of honest-to-goodness life-changing help that they desperately need, deserve, and would fight for themselves if they were truly able to.

Thanks for reading... until next blog.

Wednesday, July 8, 2015

I've been busy living and creating income..

I'm now creating tee shirts to support my medical needs and to create a booklet for TBI (traumatic brain injury) and amnesia patients/survivors to utilize in conjunction with their health-care providers. (FOR FREE!)

There is nothing a Dr can do for a patient without clear and whole information.
Most people don't realize this, but we're "consumers" in the medical and healthcare field. We must give as much information as humanly possible for our medical staff members to be able to correctly and wholly assist us in every way we need.

My major issues with my amnesia and TBI long-term side effects were that I could not clearly describe the things I was going through - the changes occurring in my everyday life - the symptom I was dealing with - or how to express them to my Dr.

With the booklet I'm creating, it will have daily checklists, journal entry spaces, and all sorts of diagnostic information in which patients can fill out each day in order to share with their Doctors. Without this kind if vital information, it is VERY hard for Doctors to diagnose and treat their patients. It is impossible for doctors to know what is truly going on in the lives of their patients or how to help them without enough information.

I'm creating tee-shirts, tank tops, and various other things on teespring.

Here is the link to what is currently available (Until The End Of July, 2015.)

Please stay tuned for new designs and PLEASE tell your friends and loved ones about it, share the link, and encourage them to purchase these tees. Eventually, I'm going to mainly focus on the TBI, Amnesiac, and disability communities for the themes of the tees. For now, I'm creating themes that friends have requested I design. ALL of the profit will go towards my healthcare costs and to creating these (free for patients) booklets to be used with their healthcare providers. I'm working with my own Dr, nurses around the country, and neurological specialists in order to make the most out of this booklet, as well as my fellow TBI and Amnesiac survivors for input and insights on what else should be included in them.

They will forever change the quality of care us survivors and patients get, and the ease and wholeness of the care our medical professionals can give us.
(This booklet can be adapted in the future for ALL sorts of long-term health issues like MS, Cancers, Pain Diseases, Crohns, Alzhiemers, Mental Illnesses, etc, etc, etc...)
Thanks for reading, sharing, and spreading the word. I cannot do this without as much sharing and advocating as humanly possible. Thank you!

Tuesday, February 3, 2015

Life Changes

I have not written in a while.
A lot has been occurring in my life.

After many months of searching for purpose, meaning, belonging, and what my talents are, I finally found my outlet in photography & editing. I've started a small business selling my shots, and various photo-products. Since I cannot hold an outside of the home job, one that requires me to drive, one with set hours, set days, etc, because of my injury side-effects and obvious inability to drive regularly - I decided to make my own job. Making the photo-products and opening a bank account for PayPal in order for folks to buy my stuff, took a while but is now almost done. Just a couple of steps remain before folks can start adding items to their online carts.

It took a LOT of soul-searching, disappointments, and even some total failures to bring me to where I am today.

Actually, my boyfriend of four and a half years and I just split up yesterday. I didn't rest at all last night, and barely this morning. I've been feeling heavy, sad, burdened by grief, and totally in dismay that things weren't as "good" as he let on they were. I had no clue he wasn't "in love" with the me I am today. He'd been hoping I would magically revert into pre-amnesia Tara but I never have. He didn't want to leave, but knows that living false-lives isn't healthy for either of us, and I have to agree wholly.

This is a HUGE loss for me, almost as much as my initial amnesia shock had been. It's going to take me a while to really settle my emotions about him leaving, and about feeling "inadequate" about myself and those whom care about me. This has been really harsh, hard, and has changed my perceptions on loyalty and honesty. Things could and would have been much different if he'd been honest about my changes and his feelings from the start. Maybe he was truly hoping that his emotions wouldn't change, or that he'd somehow still be "in love" with the me I am now. I do not know.

Anyhow - I'm sure that greater things will happen, and the opportunity to sincerely put all of my time and energy into my small business venture will become a huge blessing of abundance and success.

That's my update.
Here are my websites and Facebook links: