Miracles

September 15, 2017

So I’ve had a couple of small miracles happen. I’m almost afraid to write about them for fear of jinxing it all and falling back into the abyss.

Strangely enough it all stated over a decade ago when I first got sick. I was writing on a site called Helium at that time. My neurologist was working on the assumption that I had MS due to my symptoms and the fact that I had spots on my brain.

I had written a piece that humorously explained my MS as my hard working immune system turning on my brain when it had nothing else to do. Haha, right?

Well I soon got a private message from a doctor in California who had developed a theory that most auto-immune disorders were caused by untreated rheumatic fever. He described me and my symptoms to a T and gave me a list of tests for my doctors to run on me.

I’m not afraid to tell ya it freaked me out! He was spot on, like he was sitting over my shoulder or something. So I didn’t have the tests run. I did correspond with him for quite some time. He turned out to be an awesome man.

Fast forward to March of this year, 2017. I finally get to see my actual doctor. I love this guy. His hobby is the human body and how it works. He is just like My Dearest Husband is with machines. Body mechanics is his hobby.

I’m there talking to him about getting paperwork for my disability hearings. I mention this conversation with the California Dr about rheumatic fever and all of a sudden the air in the room gets an electric charge. You can hear the gears turning in his head. He starts shooting questions at me rapid fire like a machine gun:

Ever had double vision? Yes

Sensitivity to light? Yes

Unexplained rash? Yes

Blurry vision? Yes

Memory trouble? Yes

It goes on and on. He’s almost reading a list of my symptoms from the start! He says he has an idea. He’s going to write me a script. Try it for two weeks. If he’s right it will change my life. If he’s wrong we haven’t lost anything.

I figure what the hell. I got nothing else to do. I’ve spent the biggest part of the last decade going to bed every night praying that I wouldn’t have to wake up the next day. I’ll try anything.

So I take 5 mg of prednisone a day for two weeks. It’s like that stuff crawled into my brain and gave it CPR! It’s like waking up out of a coma! It’s like being brought back to life after spending more than ten years dead! My brain is waking back up!

I  move! I’ve lost almost 55 lbs so far. I used to listen to people talk about doing things and honestly my brain just couldn’t conceive of any reason why someone would do it, or how. None of it made sense.

Let’s go eat and watch a movie. What? Go away to get food? But there is food here? I just didn’t get it. Nothing about being a human made sense to me.

Now I have actually purchased new clothes! Lol I don’t do that because it makes me nauseous. But I did it this time with a smile on my face!

So we are working on getting a diagnosis for this. Of course getting one can be darn near impossible. Of course, I can’t ever have anything easy or straightforward. But I’ll take this.

If I never get anything but this 5mg of prednisone I’ll be happy forever.

My Dr. Frankenstein pulled me up out of the grave and built me out of pure junk. I’ll gladly take that miracle!

 

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Goodbye To The News

November 10, 2016

I watched the absolute death of journalism, of unbiased, objective reporting of the facts on election night.

Specifically I watched CBS destroy what was left of my belief in the existence of it.  Even more specifically I watched Gayle King, Charlie Rose, Norah O’Donnell, Bob Shieffer, and John Dickerson destroy it.  They broke my heart in the bargain.  I really liked and admired these people.  I thought a lot of them.  I believed that they were true journalists.  As it turns out, they are the exact opposite.

As I watched them fumble, flat footed, for an explanation for how they had not known what was going to happen during this election I realized that they thought they knew what was going to happen and had prepared their entire night based on that. They had decided long before election night that Hillary was going to win and that she was going to win early.  They had their talking points all laid out, their line up of factoids set out in order of appearance.  They probably even knew what time they would call the election and sign off.  I laughed at them for being silent as they sat in disbelief.  And then I got angry.  I don’t think I have ever been so disappointed by such naked dereliction of duty.

That isn’t reporting! That’s not journalism! That was a talk show.  Just like The View. The Talk. The Real.  That was nothing more than a bunch of people with an over inflated sense of their own importance sitting around trying to influence the ignorant, uneducated, hillbilly, redneck, unwashed hick people in their audience to vote how they wanted them to.  And they believed that they had done it. They believed that they had that election sewn up just the way they wanted it to be.  They were stupified when it didn’t go the way they meant for it to.

One of the most important factors in a successful democracy is a free press.  A free press assures that the people get an accurate and unbiased reporting of the facts surrounding the important events in the country and the world so that the citizenry can make informed decisions.   These people aren’t reporters of the news, they are participants in it. That makes them not only useless to us, it makes them destructive to our democracy!

To quote Walter Cronkite, “Objective journalism and an opinion column are about as similar as the Bible and Playboy Magazine.” You my ex friends are most certainly Not the Bible! You’re not Playboy either, that’s crappy to Playboy and they haven’t done anything to deserve that comparison.

I hope when things settle down and you all have time to reflect on what has gone on that you feel the shame that we feel towards you.  I hope you realize the harm you’ve done and are repentant. I hope you have some sort of understanding of the breach of trust you have caused.  I don’t hold out much hope for that. You can’t un-ring that bell anyway.

How do you like the result you created? Was it what you hoped for?


I Am A Liar

September 14, 2015

I am a liar. I am a total, complete, unrepentant, unadulterated, compulsive liar.  I have honed my skill to professional levels.  You would not be able to tell I’m lying.  I am JUST that good!  I know you think I’m boasting but I’m not.  I’m simply stating facts.  I’ve had to get this good.  It’s a matter of being able to walk through this world with my head up.  Sounds stupid doesn’t it?  Let me explain.

“How are you doing?” isn’t really a question.  It’s a social nicety.  It’s a segue to other social niceties that lead to quick getaways by people who can all then feel like they have had an acceptable social interaction without having to risk any real personal involvement.  On the other hand, for someone with a chronic illness/chronic pain it’s a minefield question.  Some people actually ask that as a real question.  When you give them the lie answer they feel betrayed when the truth comes out.  Others ask it as a  social question.  If you give these people the real answer they act like you just defecated in their dinner.  For a person who’s concentration is 80 percent involved in not screaming, trying to determine which of these people is which is very difficult. No matter which course you choose you are going to have to see a look in someone’s eyes that makes you miserable.

Luckily the chances of running into someone who really wants to know how you are feeling are almost nil so your best bet is to go with the “I’m fine.” lie.  This is the lie everyone is expecting to hear as well as the one most likely to be given out in response to the same query by you.  You don’t run near as much risk of watching someone imagine stomping a large ice pick through their partner’s ear for asking the question if you just go with this response.

“Are you ok?” I just say yes.  If I’m sending gouts of arterial blood shooting skyward hundreds of feet I’ll still say yes.  It’s my go to response.  Most of the time everyone is happy to just let it go.  I whine far too much as it is.  I want to slap myself silly sometimes just to shut me up even when I’m only thinking it.   So if I fall down or twist my ankle or drop something on my foot or stumble or hit my head or run into the doorframe or knock over the lamp or any of the hundred and seven other things I do in a day and I get asked if I’m ok I say yes.  It’s always a lie.

If you just say yes, I’m ok,  then you don’t run the risk of watching the look of social concern turn to “oh crap not again” when you start to say what’s wrong.

Here are a few more examples of my lies:

I’ve been praying for you! Do you feel better?          Me: YES!

Did you try that oil I told you about to cure your incurable condition?          Me: YES!

Did you eat that exotic food I heard about that will cure your incurable condition?         Me: YES!

Did you do that strange exercise I read about that is impossible for the most physically fit Olympic athlete to perform but you should do it because I’m sure it will cure your incurable condition?         Me: YES!

Did you find that obscure treatment I sorta remember from that book or magazine I read that one time somewhere that told about that medicine that could probably cure your incurable condition?          Me: YES!

So when people ask me how I am I lie.  I tell them I’m fine.  I say I’m OK.  I tell them I’m doing pretty good.  That way I won’t be ashamed anymore.  I won’t have to see those looks in their eyes anymore.  I won’t have to see the regret for asking the question anymore.  I won’t have to feel the humiliation of realizing that they didn’t really mean they wanted an answer for the question.  Or the disappointment that they went to all the trouble to find the one herbal remedy that would cure me and that I’m clearly too ungrateful to try it, just too much of a whiner to want to get better.


My Life With Chiari

June 13, 2012

I wrote this for a lady on a Chiari website. And since I’m whining today I decided to post it here too.

 

Looking at my life since Chiari is like looking through the wrong end of a telescope. My life went from active and open with every possibility to minimal in the extreme.  Over the roughly ten years since I was diagnosed with Chiari, I have gradually whittled away pieces of myself, my activities, my dreams, my relationships, and my possibilities.  I am left with the knowledge that I am less.  Less than I could have been, less than I want to be, and less than others expect me to be.  It is a constant humiliation. It is a constant pain in so many ways that it’s hard to imagine putting them all on paper.

 

I live in an almost constant state of dread…..I dread the beginning of each day because I know that before the day ends I am going to wish I lived a hundred years ago when people died early.  I dread laughing because if I do, people are going to expect me to do things that I either can’t do, or that I know if I do them I will pay for them later.  I dread the disappointment in the faces of the people I love when I say I can’t. I dread housework. I dread parent teacher conferences because I am usually so distracted that I can’t ask questions, I can’t think right, I can’t make promises. I dread getting a great idea because I know that it will come to nothing, because if I don’t forget it all together, I won’t be able to follow through and that is one more disappointment to add to the millions of others I’m stacking up.  I dread, and when I say dread I mean DREAD going to the doctor.  I have apparently been branded as …..I’m not even sure what. Every time I walk into a doctor’s office, they take one look at my file, smirk, and shake their head.  I am apparently an idiot because I walk in with hope every time and I walk out wishing a really big heavy truck would just hit me and take me out of this. I dread coughing(headache), using the toilet(headache), changes in weather(headache), heat(dopiness), happiness(creates expectations I can’t meet), sadness(thoughts of suicide), hope(leads directly to devastation), open spaces(nothing to hold on to), battery operated toothbrushes that my dentist HIGHLY recommends(makes me fall down if the casing touches my teeth), driving or riding in a car(obliterates my consciousness), other people’s hopes(disappointment), dreams and desires(disappointment), other people’s disappointment(wish I was dead), waking up(what new symptom, disappointment, limit), going to sleep(what will happen in the night to my brain), Wal Mart or any other store(makes me sweat and lose my mind), cooking(can’t remember the order of things to do), gardening(poor plants), mowing the lawn(vibration of the mower screws my brain to pieces), school programs that take place after 4:00 pm(too tired, too brain fried to go). This list is longer than there is time to read it.

 

I live in fear of the fallout from my symptoms. I fear open spaces because I fall(broken ankle complete with a metal plate and nine screws from stepping off of a 6 inch porch). I fear going out in public(because I have bladder and bowel incontinence). I fear that my husband and kids will get sick to death of all the things I can’t do and gradually disappear just like the rest of my life has. 

 

I used to have a life.  My husband and I used to go all over the place doing all kinds of things. We used to go to Bike Week at Daytona Beach in Florida every year. We used to go camping. We still go camping but it’s a huge production getting all my ridiculous accessories ready to go with me. And every time we screw up the desire to do anything it’s always with the knowledge that at any moment from start to finish I might have to just come home.  I used to have a job and be a contributing member of my family and society. Now I can’t remember anything.  I have lost large blocks of my life. I’m not even really sure anymore who I am, much less who I used to be because I have lost so much of myself.

 

I used to have friends. But little by little people drift away to find people who can DO things with them.  I’m ashamed to invite people to my house because I can’t keep up with housework.  I can’t bend over to pick things up, I can’t lift my hands over my head to sweep down the cobwebs, I can’t stand very long so the dishes are constantly piled sky high, I can’t even wash my hair regularly because I can’t close my eyes without falling over and I can’t hold my arms up very long to wash it, and, and, and, and. I get FUBAR’d when I ride or drive. 

 

The last time I actually tested my IQ(which was in the early nineties), it was 147. Not bad, right? Well…..it’s not good. Because I’m stupid most of the time. I used to be witty, and funny and smart. But now I get a joke the next day if at all. Partly this is because I can’t tell what people are saying.  My neurologist had my hearing checked once because of that, even though I told him that I could repeat back to him every word he said verbatim, I just didn’t know what those words meant at the moment.  That 147 doesn’t work in my favor at all.  Everyone just thinks I’m lazy, I’m lying, I’m conniving.  I went to a neuropsychologist twice. The first time she told me that the only person who had scored higher on her testing was a Neurosurgeon.  The second time I went I scored higher than him. Then she told me that there was NOTHING wrong with my brain.  After that she leaned in close and whispered…..Are you trying to get on disability?  I was so humiliated, so ashamed of myself for even being there, for wanting to find out what was wrong.  And now, even though it would help immensely, I’m too ashamed to file for disability. And every day I wait, the money I would get for it dwindles down.

 

One of my pupils is smaller than the other. Sometimes I get this thing, it’s hard to describe but I’ll try. I feel like I’m being choked only not choked of air. I can breathe just fine but when you hold your breath for a long time your face gets red and your eyes bug out and it’s like that. Just this pressure in my head like it’s trying to explode. Then I hear a buzzing sound that seems to match a heartbeat and I hear what sounds like the whoomp whoomp whoomp of a helicopter. While the buzzing and the whoomp are going on I see blue flashes of light. Neon blue. It’s really pretty. After that the pressure goes away. But while I have the pressure, the size of my pupils is REALLY different. That one scares me. I told my Neurologist about it and he set me up an appointment to have my CSF flow checked….a week later. I guess I’m stupid for wanting to have it checked while it’s happening. I’m really not sure anymore what I should expect, what’s stupid, what makes sense. Nothing in my life really makes sense anymore.

 

I hurt. Physically I am in pain almost constantly. Emotionally I AM in pain constantly. Mentally I’m too stupid to be in pain constantly and so I continue to hope. I hurt in my neck, my back, my arms and legs to a lesser extent. I would give anything on this earth to just get a massage, a neck rub. But my family are terrified to touch my neck. I feel like a leper sometimes.  Years ago I would still ask for someone to just rub my shoulders for a minute. Now I never even consider asking anyone to touch me.  My skin starves for some basic human contact. Instead I just get someone to put my TENS unit on and then I cry for a while.  Cripes I sound so damn pathetic!

So there you have it. Look fast because pretty soon you won’t be able to see me anymore.


Marriage Amendment in North Carolina

May 10, 2012

Outhouses – 61%

Functioning Brain Cells – 39%

Welcome to the modern world.

 

On the positive side, I would like to thank Joe Biden. The man has cojones the size of a dump truck.  You Da Man, Joe! 

Also, a day late, thanks go out to President Obama for finally voicing your support.  Discrimination is an ugly thing regardless of who is being discriminated against. 

My fervent hope is that my descendants will eventually grow up in the same America I grew up in, where people are free to be who they are without fearing government interference. At the moment, we are not in that same country.  It makes me sad.

For those women in North Carolina who are living with someone and you have children together I have a piece of advice.  Your children will now not be recognized as their father’s children unless you go have the father legally recognize them. Talk to a pro bono lawyer and see what you need to do to have this done.  For your children’s sake, look into it and do it fast.  Because if their father happens to pass away before this is done, they have no legal standing as far as benefits go. 

And last, but not least, shame on you North Carolina for being backward, foolish, thoughtless, and cruel.  May you reap what you have sown.  But don’t come crying when the tables turn and YOU are the one being made to feel less than human because of your own harmless personal choices. You have bought and paid for whatever you get because of your vote.  You 61% are a shameful abomination. I dismiss you from my consideration.


Random Stuff 5/7/2012

May 7, 2012

Happy Birthday to Buddha!  He’s seventeen today and they have been seventeen awesome years!  I hope they get exponentially better every year.

 

Well in roughly thirty six hours we will all know whether or not I live in a state where out houses out-number functioning brain cells per capita. The vote on the “Marriage Amendment” happens tomorrow in North Carolina. This is also being referred to as the gay marriage ban amendment.  I find myself repulsively fascinated by the very fact that with all the economic problems we have in this state, not to mention this country and around the world, the biggest ticket to the voting booth is an amendment of the state constitution that is blatantly discriminatory and ultimately pointless. 

We preach tolerance and acceptance to our children, assuming we are decent human beings, on a daily basis.  We have laws against discrimination in the workplace.  We have laws against hate crimes based on a person’s sexual preference, race, or religion.  And yet this state feels compelled to put to a vote whether or not we should amend the state constitution to say marriage is one man one woman.  North Carolina wants to make discrimination a basic part of their state constitution! What the hell?

Marriage, unfortunately, is usually one man, one woman, a woman on the side, a man on the side, a few one night stands and then divorce.  Followed closely by another man, another woman, a few more people on the side…..etc, etc. ad nauseum.

Seriously, how’s that working out for ya?

What marriage should be is two people  (and I’m not a real stickler on the numbers) loving and supporting each other and their family. Who in their right mind gives a rat’s ass what sex these people are?  Love and support is hard enough to find in this world. Why limit the places and ways people can find it? 

I will be voting against this ignorant pile of bullshit tomorrow.  We’ll see how it goes.  In the meantime, I would like to send a message to whatever ignorant, backward, family tree doesn’t branch, boneheaded fool who thought this idea up and all the can’t think for themselves, easily led, go whichever way the wind blows ass hats who supported getting it on the ballot.  Congratulations for being my current shit for brains award winners.  Way to piss on the progress this country has made moving into the twenty first century.

 


Little Of This, Little Of That

January 8, 2012

We have some bunnies.  They are adorable as only bunnies can be.  MDH got me two bunnies when his friend let him know that he had some bunnies he needed to find a home for.  Apparently, as he always does, he remembered when we were in the Farmer’s Supply store and I spent a good thirty minutes conversing with a bunny in a metal tub.  I love talking to animals.  They are in no way judgemental and they always laugh at my jokes. 

So we have these two babies.  They are furry and funny and curious and brave.  We name one Isabella and the other Nitro, which got changed to Snuggie, which got changed to Noogie(I have no idea where this came from, but I was the one who started it).  Now Isabella’s name is Izzy.  This is because we realized Izzy was male when he found his “special purpose in life” and started humping Noogie til he fell over sideways in a swoon. 

We finally had to move them to different quarters because Noogie emphasized her “not tonight, headache” with an attack that left Izzy sans hair on his nose.  MDH, darling that he is, constructed them a three-story condo, complete with balcony and burrow.  We actually moved lawnchairs into a semi-circle around them and sat outside drinking coffee and watching the bunnies for amusement.  (We have such a random life sometimes)

Just in case, we kept track of how long it had been since they were together and finally came to the conclusion that Noogie was not preggers.  Whew!  Dodged that bullet.  Well, not so much.

Rocky and I returned from town one day to discover four tiny little bare assed baby bunnies in the cage.  What??  Yep!  Four of em.  Crazy Legs told us he walked in the house and found Mini (one of our rat terriers) laying on the floor, eyes open, not moving.  And DeeDee on the couch with her paws up on the back of the couch, staring at the wall.  He couldn’t figure out what was going on.  The he checked the rabbit cage and there were the babies.  At that point, the dogs came out of lala land and started freaking out. 

OMG…..baby bunnies are the cutest things EVER!  The fit in the palm of your hand, will try to hop out even though they can’t see, and they feed upside down!  I’m serious.  They get close to their mom’s tummy then they flip upside down onto their backs and start to feed.  Weird! 

We gave one away and sold the other three.  Ten bucks apiece!  w00t!  I was thinking about getting Izzy fixed but now I’m not so sure.  I wouldn’t mind feeling like a contributing member of this family again.  We’ll see how it goes.

Next……Intentions vs Results

I have a very good friend who had a brain tumor.  She was treated for it, did a bunch of rehab, got way better(even lost weight!!!), and it was all way awesome!  She was telling me the doctors told her she had a 50/50 chance of it coming back at some point in the future.  I told her that was great!!!  She said…Huh?  WTF is so great about that????

My intention was to say that a 50/50 chance is all we ever get.  Any of us.  We could wake up dead tomorrow, we could choke to death on a chicken sammich, we could be walking down our steps and get tripped by a tear in the space/time continuum(don’t laugh, shit like that happens to me all the time!),  a piece of space debris could fall out of the sky and embed itself into our brain.  ANYTHING could happen.  Every time you wake up in the morning you have a 50/50 chance of going to bed that night without a tag on your toe.  THAT was my intention.

Result?  I pissed her off and now she knows without a doubt that I’m an idiot.  *sigh*  I’m really getting tired of people finally figuring that out.  I had hoped to keep it a secret for a while longer. 

Intention: Wake up in the morning and decide what housework I need to do, then do it.

Result: I get so bogged down in all the things that need doing that I ‘m not able to do, that I can’t think straight.  I can’t sort things out in order of execution, I can’t bend over, I can’t put my arms over my head for any length of time, I can’t get too hot, I can’t be in an open area without something to hold onto in case I get vertigo, I can’t go down steps very good (hence the badly sprained right ankle and broken left leg that started on the first day of summer and ended on the last day, literally, which was caused by a step down off of a six-inch high porch), I can’t turn my head too fast or I will fall down, ……I could go on forever but I will stop here. 

Intention: Find out how the kids’ day went at school. 

Me: How was your day?

Result: *sigh*

Buddha: FiiiinnnneeeUH!  (whereupon he disappears into his room never to be seen again unless a) food is ready to eat, or b) I wake him up the next day to go to school.

Princess Bella:  Why, what did you hear?

Me: Uh….nuttin.  I was just asking.

PB: Well it was fine! (face getting red, eyes slightly bulging)

Me: Good!

PB: I don’t know why you always have to ask me that!  Nothing happened!  Everything was fine! Not one bad thing happenedalllday! (face very red, eyes bugged out like something off of Outer Limits)  Whereupon she disappears into her room, which lasts all of five seconds because Bella runs at warp speed.  She can only bounce off the walls of her room for a few seconds, then she has to have a larger area to bounce off of. 

Me: (alone in the room, slightly disoriented) Well, that went well.

Next…….

I’ve been browsing around the blogosphere and I ran up on something truly amazing!  simplynutmeg.com is the coolest. blog . ever.  Nutmeg has the voice I heard in my head when I first imagined this blog.  THAT was what this was supposed to sound like.  Unfortunately, my blog comes out sounding just like me.  I wanted to sound all witty and funny and cool.  I guess this could be considered a P.S. to the Intention vs Result section of our day. 

Go check her out.  She rules.  http://simplynutmeg.com/  And while you’re there, you HAVE to check out the “how I survive barney” section.  The woman has taste!  You will find yourself, ninety minutes later, holding your sides laughing and wondering where the time went!

Ok, seriously, I have to get something done.  I have been sitting here for hours and it’s time I earned my keep.  I could go make that bread in those new pans that I bought myself for Christmas.  They have cute little shapes.  But I’m not sure if the bread in a tube will work for that.  Maybe I should try to come up with something more productive to do with the bread?  Or I could do laundry. But I can’t bend over to take it out of the dryer, so I can only do one load until someone comes over and I have to beg them to get them out for me.  I could clean out the closet, but that requires arms over head, bending over….no, I guess not that one.  I could vacuum the floor!  Yeah!  Yay I found something I can do!! 

Crimanently, it’s sad when sucking dirt off your floor is the most productive thing you can think of to do in a day. 

Welcome to Life in the slow lane.

 


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