New Venture, New Bling, A Little Hope

Rather than to continue to sit at home and feel sorry for myself which generates 0 income and is not productive, I decided with the help of a friend, thanks to CC, to become a merchandiser for Chloe +Isabel. I looked for a while to see which line of products I could get behind, which I could get excited about sharing with friends and my online world. The C+I brand is bold and innovative, conservative and classy, brash and sassy. They accomplish it all by having both sides, Chloe, the more funky, bohemian girl, and Isabel, the girl true to my heart, who likes pearls and small stones and just enough bling to make a statement.

I took a poll recently about what you wanted to see on the blog, and this was it how can we as those living with disabilities make money. I have not made a sale yet, However I am on social media trying to generate buzz as these products are fabulous! They are alloy free, nickel free, and do you read lifetime guarantee? You sure did. It’s also done something far more valuable. It’s given me a reason to get up (besides the dog). I am learning sales skills, marketing techniques, learning many things about how to run a business that I can take with me. I also learned it is backed by Ashton Kutcher.

I am still looking for my next great advising or counseling job, but until then, for the best jewelry around, I would love to earn your business.

https://www.chloeandisabel.com/boutique/gerenekeeslerc+i3

All Meds are Not Created Equal

How long have you been taking your medication? It scares me when I read on different sites people want to quit them. Sure, I want to quit taking them, but I know I will feel very sick if I do quit taking them. It is not worth the risk my friends. Take your medication. Keep a seizure journal. Keep a journal of what triggers your outbursts (or in my case who) The most important thing with your medication is consistency.

Recently my pharmacist changed me back from Zonisamide (generic) to Zonegran (name brand). Now understand, he thought he was doing a wonderful thing. He found the name brand for a very good price. However, it was so much stronger than the generic, I was incapacitated for three days. What was a gesture of good will made me unable to drive or function. My system is just that sensitive. zonisamide. The only relief I had was magnesium, and a whole lot of it.

Chronic illness is not for the weak, it sure isn’t.

They Speak My Language!

Yesterday I was the most content I had been in some time. I went to an interview at this amazing place called Balance Centers. I did not have to worry. I did not have to put on any masks or hide. Am I being to Aspie? So what? I am surrounded by them. I felt relieved. This is not a personal endorsement for their facility, but rather a wave of gratitude that such places exist to help children and teens with their sensory issues, adhd, Aspergers, or whatever makes you neurologically different.

They start mention things about the corpus callosum, because really, who doesn’t talk about that in every day conversation? So I just as casually mention I don’t have one. No one bats an eye. I kept waiting for a sigh, a scream, a look like I came from another planet, but sweet validation, I was complimented on how well I have done, how much I have accomplished and how remarkable I am. That alone should make certain family members faint. I know asking them to repeat it so I could tape it would have been rude, It did cross my mind however.

There were so many things for sensory sensitive kids to do to overcome their challenges. Textures and smells that neurotypical people take for granted but we can often go into a meltdown over if not prepared. There are math games everywhere and word games galore. Exercises for your eyes, your ears, so it is easier to blend in with the kids and adults without these challenges. I talked about being in a house with 3 extroverts and how reading was my friend. It was just this joyous meeting of different kinds of minds but not damaged. Everyone’s differences there are celebrated not ignored. Work is done to get your brain in the best possible shape. I was asked to read the book by the owner “Disconnected Kids,” and start learning Quickbooks. Whether or not I get a job there, that was  such a lovely morning to be welcomed and not shamed, listened to and validated not ridiculed, it left me happy all day.

The Depths of Isolation

I have been off the blog for a while trying to get my thoughts together. I have no family support at all. I see no one except neighbors around the complex. Due to countless lies they’ve been told, I haven’t seen my nieces and nephew in six years. Brittany, Caitlyn, and Corey, here’s an open letter to you.

Despite what your grandmother believes, my epilepsy or Asperger’s Syndrome or the Agenesis of the Corpus Callosum, meaning I live without one is not something I should be ashamed of. She is, your mother is. They raised you to make fun of me because that’s fun for them. Your grandmother chose not to get me the medical attention I needed in physical or occupational therapy because she chose the baseball park, fishing, drinking or ignoring me. I got a Catholic school education but was put through hell because I loved Grandpa. He doesn’t have an arrest record, your other grandfather does. Crap happens. We all have a past. You have been fed so may lies they are too many to count. Seven doctors have said my medical problems are a result of fetal alcohol syndrome, or being drunk pregnant.

I have scars where I was let to fall down because of my lack of balance. I was promised Nana’s entire jewelry collection and it was never given to me. Everything I gave you, it’s because she and I planned it. I was promised the townhouse would be in my name. Another lie. The pills I must take to live were not bought for ten days and I had seizures that stopped my heart. The solution was to lock me up in a mental hospital, which is threatened regularly. The doctors said I was in chemical withdrawal from needing my medicine.

I have lost out of 6 jobs because that is on my permanent record. I have been told not to bring my epilepsy, Aspergers, or anxiety out. Would anyone say that to a cancer patient? When Aunt Norene died, no one called, no one came, when my Dad died, no one came, brought me food, checked on me, you know the things human beings do for each other. Except for me, because I am different. How many times did your mother tell you I was weird, smelled, strange, but I was good for gifts, rides, babysitting, or whatever I could get used for. When I need help, none of you could run fast enough.

There are rats or squirrels in my walls, my name is not on this house, that is not my problem. I haven’t had hair in 3 years due to bugs in the windows, but I guess you all expect me to jump to my death to spray. I am isolated for needing help, being different, and pointing out that doing so only causes me to get more anxious more depressed and it’s not right. My brain does not function like you. I am not stupid. I have brain injuries that were long ignored due to ignorance and apathy. I could die of a seizure in my home and none of you would know, and none of you would care.

That is all I have to say.
The world should meet my family. success

$1.50

That is the jaw-dropping amount I asked for (and was refused) to get resumes made for an interview yesterday. As my job search continues to go on and on, all I hear is hide my disabilities, I am lazy, do everything myself, and other motivational speeches. It’s exhausting not to have any emotional or financial support when all I want is a job. I have repeatedly explained I am not able to lift more than 10 lbs on my right side, and all I hear is try harder. For whatever reason I never received occupational therapy, it’s difficult for me to lift a gallon of milk with my right arm, let alone lift boxes. I have tried the Targets, Barnes and Noble, you name the store, all requiring I need to lift 50 lbs. It’s impossible. Considering I have been left without pills convulsing on the floor six separate times,
This is pretty minor.

Just my luck, my free phone from food stamps does not work. Two of them. I asked for my phone to be turned on so I could be available for interviews and in case I have a convulsion, I can reach my neighbor with a key. Do you think if they didn’t give me $1.50 they’d pay for that? Right. At least my interview went well. I have been practicing my breathing and was given a great book Working with Aspergers.

The dog has food and food stamps money comes next week. Does this sound absurd? Yes, to me too. But wait, I’m lazy and stupid, I forgot.

Surrounded by ignorance, I could choke on it.dollar

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I am not a Mom, and I’m OK

canIgetanamenWhen I was a child, all I wanted was to be a wife and a Mom. At 44, I am neither and that’s ok. It’s taken a long time to be OK with it, but it’s how it’s supposed to be. Before I understood the myriad of things that are wrong with me neurologically, I always knew something was wrong. I knew I was different.

I wanted to be a Mom so my mom would never, ever have access to those kids. I never wanted them to feel like they weren’t worthy or less than or not good enough. If they did have a problem, neurological, psychiatric, whichever, I sure as hell wasn’t going to bury my head in the sand and do nothing or worse yet make fun of them.

It’s true, for the extent of things wrong with me neurologically on paper I am higher functioning than most would think. It’s the little things like balance, coordination, riding a bike, tying shoes, figuring out which side was which on a school uniform that were exasperating and I had no idea how everyone else understood it. Whether by choice or by chance, I usually ended up being closest to the smartest girls, but in the end they were never loyal. I was a friend, a best friend until parties came up, maids of honor were needed, then I wasn’t as close as we thought. I’m also not a competitor by nature. If I’m your friend, I did not understand (and still don’t) rubbing someone’s face in how many kids you have, cars you have, money you drive, etc. It’s not a pissing contest. Can’t we all just support each other and be happy in whatever life brings us? I suppose that’s a lot to ask.

Dating has had a few highs and lots of lows. So I thought I found my military prince at 19. He was 21. My man I thought I would run away with. He told me he loved me, sent me flowers, and treated me like every young woman in love wants to be treated. I was in the stars and clouds, then I miscarried and he deployed. I was the most thin I’d ever been in years, size 10. No one ever knew about the miscarriage, not a soul until a few months ago.

In that relationship, no one made fun of me, called me names, or put me down. There is a first time for everything. I have been told even if I was thin, I’m not pretty. A former male friend I would go out with in college was fine to be seen with me alone, but would ditch me in public. But shame on me – I tolerated it. Over and over I heard, said person looks at you like there is no one else in the room. He did, as long as he didn’t have his friends around, then I was too odd, too heavy, not cute enough, his words, exactly.

My own nieces and nephew were brought up to believe I am crazy. I was good to use as a babysitter, but I was called weird, off, odd, I smell, by their mother and mine.

I wouldn’t bring in another child into that (loving) environment and run the risk of them feeling the rejection and self-hatred. No one has the right to do that to another person whether they have epilepsy or not, depression or not, and in my case it was a blessing not to be able to have kids. There are too many people I’d have to explain that don’t love me for me, and that makes no sense.

I’ve had the chance to be Mom for a while to more college freshmen than I can count. I’ve wiped tears, made some not so happy sons and daughters empty out kegs and reminded them better me than the Dean, cried with young women after breakups, laughed with freshmen who had NO IDEA who shot JR and made me swear not to tell as they watched for the first time. So, while these were not mine, for a while they were and for that I will always be grateful.

What is C-ACC?

From the National Institute of Neurological Disorders and Stroke, What is Agenesis of the Corpus Callosum?
Agenesis of the corpus callosum (ACC) is a birth defect in which the structure that connects the two hemispheres of the brain (the corpus callosum) is partially or completely absent. ACC can occur as an isolated condition or in combination with other cerebral abnormalities
The effects of the disorder range from subtle or mild to severe, depending on associated brain abnormalities. Intelligence may be normal with mild compromise of skills requiring matching of visual patterns. But children with the most severe brain malformations may have intellectual retardation, seizures, hydrocephalus, and spasticity.

Not having a corpus callosum, I’ve realized a lot of things. Now there’s a reason why I have no balance or coordination! Well, that is besides my plethora of meds! I am forever grateful that things like mapquest, GPS, Garmin, etc were created. Due to not having the above, I have no sense of direction for even short distances. Thank you Tulsa for being on a grid. I understood that city right away!

For me, some of the above is true. I have very little ability to recognize visual patterns, or which should come next, etc. In doing research for this post I found this site

http://www.nobelprize.org/educational/medicine/split-brain/splitbrainexp.html

This is about people without any corpus callosum or missing a part of it. I also use Luminosity, although I am not on it enough to have any real progress. I make no real progress  in Candy Crush, which is just as good a gauge of visual patterns as anything else, and refuse to pay for something so silly.

Recently on another site I saw parents discussing their kids W sitting. I had no idea this was related to C-ACC. Sitting cross legged, or criss cross apple sauce as kids say now, was so painful for me, I sat with my legs behind me for years. I was also a very late walker, (about 2.5) all related to this condition, but everyone assumed I just wanted to be held.

What is your experience with this condition? Partial or full? I want to know!