Ataxia, the slow, silent destruction

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 DOthink 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…***


What people don’t know about being a Dr’s Patient

Sunday, July 12, 2015


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 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.

What most people don’t know about being a good patient – and how it hurts them…

Fickle Memory

 I watched a movie a year ago that no fraction of which rings any bells for me.

This tends to happen with me over and over again. I’ll have done, said, listened to, or watched something that I’ll have zero memory of.

This is memory loss… at it’s cutest and less-vile.
In truth, memory loss can be quite frustrating for the most part, but also VERY scary.
Knowing you’ve done something but having NO recollection of it is intensely troubling.

I can imagine how people with Alzheimer’s feel – in a state of constant rotation of memories – not knowing what’s happening now or in the past, but it all feeling present. I’ve had lapses where I thought something that occurred two years ago was current reality – but after snapping back to ‘now’ I felt as though I’d gone insane.

Having no control of past, present, or recent history in my own mind. MY mind.
The thing I rely on to hold my memories near and dear, and accessible whenever I want them – but I cannot.

That feeling of not being in control is infuriating and fear-filled. Sure, some parts of memory loss are totally hilarious, but most of it is a nightmare. A waking nightmare.

I won’t lie, I DO laugh at myself quite often. I try to make light of the seriousness of how horrible memory loss/amnesia really is. I attempt to see my reality as a painful but funny life-long joke. A series of comedies and tragedies aligned as what is my life now.

Seeing the bad and the good is my way of coping with this life of mine.

I guess the moral here is – no matter what’s going on, and no matter how painful it gets, find ‘the funny’… find the joy, the jokes, and the lighter side of a bad situation. 🙂

Important Message from Keeper of Sacred White Buffalo Calf Pipe. – Chief Arvol Looking Horse

Make No Bones About It


I, Chief Arvol Looking Horse, of the Lakota, Dakota, and Nakota Nations, ask you to understand an Indigenous perspective on what has happened in America, what we call “Turtle Island.” My words seek to unite the global community through a message from our sacred ceremonies to unite spiritually, each in our own ways of beliefs in the Creator.

We have been warned from ancient prophecies of these times we live in today, but have also been given a very important message about a solution to turn these terrible times.

To understand the depth of this message you must recognize the importance of Sacred Sites and realize the interconnectedness of what is happening today, in reflection of the continued massacres that are occurring on other lands and our own Americas.

I have been learning about these important issues since the age of 12 when I received the Sacred White Buffalo Calf…

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It’s been a while…

So, obviously I’ve not written for a good long time – and here’s why:

Since February, I’ve gotten all of my teeth pulled and now have a top partial, a bottom denture, and the same upper bridge that was put in place back in 2009. I’m healing exceptionally well according to my awesome dentist. (Yes, they exist! I know they’re rare, but I found one and I’m keeping him!) 🙂

On top of all of that toothiness, I’ve been seeing my Rheumatologist and Neuropsych on a regular basis. I’ve definitely been diagnosed with fibromyalgia and nerve damage, on top of my occipital neuralgia. (Ouch!) My neuropsych has been diligent about helping me with my PTSD and anxiety issues, and has given me great resources for self-help, outside of her helping me.

Back in the middle of May, I found out some terrible and disturbing news about my little brother (whom I’ve not saw since my brain injury in 2013.) Apparently he’s been convicted of international and national crimes (which I’m not giving details of) that I’d no clue he was even arrested for.

I found this out by trying to wish him a happy birthday, in May, then texting his mother (same dad, different moms) about why he hadn’t responded. She immediately called me back and told me he’d been arrested back in January – then she explained why.

Suffice to say, I was in shock for a few days, angry as hell for a couple of weeks, and finally just fearful for his safety while he awaits his sentencing trial in October.

As if that’s not enough, my older brother (same mom, different dads) got a call that his father – which he’s never met, since about 2 years old – was on his death bed in Florida. 😦 Our Momma, and stepfather (whom we call Dad) took him to Florida to not just meet him, but to say goodbye. On the way there, my bro had a grand mal seizure! Yikes! He’d never had seizures before… anyhow, they make it down there.

His father couldn’t speak anymore (even though he could just days prior) and my bro was heartbroken that they couldn’t have a conversation. On their way back to Missouri, his father died.

After they all got home, Momma and I helped fill out all the forms, write emails to the morturary, the crematorium, and the hospice, and take all that stuff of my bro’s shoulders during his time of turmoil. About a week later we got his dad’s ashes in a beatiful urn in the mail.

Besides aaaalllll of that, my bro and I have gotten closer. He’s been seeing Dr’s and things are looking better for the both of us (medically & emotionally.)

I’m getting used to my gums healing and my new hardware. He’s getting used to medication for his seizures and healing his injuries from other recent things. The both of us have been enjoying each other’s company every time he’s down here. He’s such a good big bro! I adore him. ♡♡♡

☆ Plus, my little bro wrote me a letter – and my big bro and Dad both gave me some helpful advice about what/how to respond without letting my anger out.. To keep the letter positive and let the progression of our correspondences dictate when is the right time to ask him the things that have been keeping me up at night about his crimes committed.

Until then, I’ll keep focusing on my healing and the things that make my life healthier and happier. 🙂

Thanks for reading! 😀

Untel next blog… ♡

Teeeeeth! 😀 lol’s ♡ ☆ ♡ Yes, I’m growing my hair out – nerve damage agony be damned! It’s going to hurt anyway, so I might as well look gorgeous through the pain. 😉

Why artists stick in us after they’ve died

19 Famous people/artists/actors have died within two weeks so far this January 2016, from 1-6-16 to 1-20-16… 19 people is a lot of people…. 20 if you count Celine Dion’s brother. But that’s not the point of this entry…. that is as follows:

I’m not ashamed to admit that this was once/still is – a dream of mine – to become a part of everyone through my work. To be remembered for what I’ve made, and who I am. (I think we all want that to a certain extent. To not die and be forgotten.)

For a moment while I was reflecting on every artist and musician whose died in the last two weeks, I wasn’t sure why people would cry about these people they’ve never known. Then I realized something… We all know them – perhaps not their day to day attitudes and experiences.. We know the parts of themselves that come out through their works. We know pieces of their souls and the deepest caverns of their minds. That is no small thing that can be dismissed in a passing thought. We re-conjure their parts and pieces with every song we sing of theirs, or every word in every book we read of theirs, or every work of art of theirs we gaze upon… Those things do not die when their body dies. Those things live on, long, LONG after they’ve since gone. They stay alive in our minds and the things we choose to keep around us in our personal dwellings.

I hope to one day be a small part of this breed of humans, the artists who share themselves with the world in ways nobody else can.

VVV –( I found this to be very true. All except the last part – when they die, a part of them lives on in us who are still alive remembering them.)– VVV

Thanks for reading. 🙂

Haven’t Written in a While

First, I’d like to admit; The family get-together for “Thanksgiving” was actually really nice. It wasn’t nearly as awkward as my first Christmas with the family two years ago (post amnesia.) We had a great time. I’m proud to announce that the entire day beforehand, I baked six dozen cookies (3 doz of two different kinds,) and made meatballs with our new family tradition cranberry BBQ sauce. Everyone enjoyed those! 🙂 Lastly, I made two snack trays. One with meat and cheeses, and crackers – and one with veggies and dip. I attempted to make them look like turkey tails, but they came out looking more like delicious hand-fans. LOL

Secondly, I’d like to admit some personal medical journey stuff – which hasn’t been easy.
The medical system in mid-Missouri is old-school and is rather difficult to navigate if you have any serious health issues or diseases. Having stated that, I do know they’re doing the best they can with what training and knowledge they have. I do know that all medical care professionals have to get mandated updates to their practicing licenses, but that doesn’t mean they’re up to date with all of the medical research breakthroughs and updated medical science practices. For me, that means that my Dr and LPN are unaware of the breakthroughs of brain sciences and treatment options. Matter of fact, they’re about 20+ years behind.

For me, that means neglect of epic proportions. As a medical care recipient and “customer” of their services (or lack there of,) I am responsible for how I present my medical problems, and they’re responsible for what to do after they’re made aware of my problems. The issue is, they don’t know there’s new treatment options and ways of dealing with the medical issues I currently have. This peeves me off something fierce. I attempt to let them know that through my own personal research of options, there is more they can do. Obviously, as professionals, I’d expect them to look into this newly updated science and get back to me about their best-practice and treatment plan options, but instead, they think I’m judging them or how well they can perform their jobs…. which absolutely isn’t the case — until they’ve made it clear that my input isn’t valid. THAT’S when I judge them based on what they’re NOT willing to do.

It is EVERY medical care practitioner’s job to do the best they can to prevent and treat medical issues. They’re supposed to disregard their egos and do what’s best, and most current, for their patients. This hasn’t been the case for me about my brain injury. Matter of fact, they’ve done the least possible to treat my cognitive, emotional, and executive function issues post-TBI. My physician actually told me to go see a therapist – which isn’t a bad idea, since I’m scarred emotionally based on the fact that my medical-caregivers are lacking enthusiasm or dowithall, to do anything at all to treat my brain injury side effects. I’ve been made aware that my memory loss may never return to normal, which I have accepted – but to tell me there’s nothing I can do but go to a therapist for brain-function issues, is absurd and downright belittling. If I had cancer, would they tell me the same thing? I DOUBT IT!!!

So anyhow, on the plus-side, my LPN referred me to a rheumatologist for my bone, muscle, and all over body pain and stiffness, and the fact that I have psoriasis (since birth.) She diagnosed me with Fibromyalgia, and has ordered numerous X-rays to see what’s going on with my bones. The truth is, I’ve been physically abused for almost my entire life until recently when I took back control and decided being alone (not in a romantic relationship) was better than being abused. Seems like common sense to most people, but until my brain injury, I must not have known I was in-fact being abused – because it went on for many years without my getting away from it to heal and get emotionally healthy again. Not only was I abused by my biological father (which I don’t call, “Dad” – I call my stepfather “Dad” because he’s been a real Dad to me since I was 15,) but I also put myself into situations where my job positions and choices in life were damaging to my body. Now, I’m anti-abuse, anti-damage, and anti-hurting.

I have to go to the hospital in the network of that rheumatologist soon and get those x-rays done, and then I have more blood work tests to be done because I’m deficient in Vit-D3, really badly. I’ve been ordered to take 10,000 iu’s daily of for a month, on top of my fish oil, B-complex, and folic acid. (Which is a bummer – but I’d rather take vitamins than pharmaceuticals any day.) So, that’s what I’m doing – and we’ll see those results likely next month.

The rheumatologist also referred me to their network’s neurologist! How about that?! It took an arthritis doctor to refer me to a neurologist… hmm…. so for that, I’m VERY grateful. I’m not going to allow this visit (in January next year) to go to waste. I’m going to tell her (the neurologist) all about my issues, and make SURE I’m heard and that she does something for me. My physician dropped the ball, bigtime, on that one. He referred me to someone who was retiring two weeks from my appointment date. The guy (neurologist I was referred to first) literally told me that he was retiring, he “made his career off of paxil” and then proceeded to prescribe me paxil instead of doing the neurological tests I was sent to him for. Seriously! That happened!!! Suffice to say, I NEVER took a single pill of paxil, and later found out that fresh brain injured people are not supposed to take medication of that nature, or ANY SSRI’s of any kind! Huh!? Ya! What a freaky trip… this retiring neurologist never once told me he was referring me for treatment at the brain rehab, and I was never informed that I was to start treatment there a year ago.

I only accidentally found that out after grilling my Dr’s office personnel about why nothing had been done as far as treatment goes for me, the appointment I had the day before my birthday this year. The office lady told me I was a “no show” at rehab, and perplexed and appalled, I told her I’d never known I was to start treatment there, and was never notified – not through mail, or phone calls, or even from THEIR office who had the information in the FIRST PLACE!!! I asked this office lady if I should contact the rehab center to let them know I’d never been notified, and she told me not to. She said they wouldn’t even consider treating me after being a no-show. I about lost it!! I haven’t contacted them yet, but I’m going to.

Okay – now that I’ve completely upset the heck out of myself by finally writing about this mess, I’m going to go take care of myself – be extra kind and gentle with myself – and probably watch a cool movie to calm down. I should also eat something – since I only ate once yesterday and am feeling that emptiness in my gut from “hunger.” I put that in parenthasis because I don’t actually feel “hunger,” but rather I feel that I should eat something. Weird? Ya…. brain injury side-effects are indeed weird! See y’all later.

Thanks for reading. 🙂