Is your thumb tired?

14 May

I am marshaling my anger. The problem is that I am not the person that I used to be. And yet I am. My brain is not the same, there is too much damage. I am also exactly the same. Just as emotional, just as righteous. Just as sad and happy and loving. The thing that changed was that I have less of a handle on it all. All the switches are too too sensitive. I am also much more aware of it. More aware that I am not patient enough or even kind enough sometimes. I know its not just me. I am blessed with honest friends. They share with me their own problems and we are all working through them. I was reminded of the following anecdote. This is one of those true anecdotes that is only shifted by the fuzziness of my memory and the fact that it took place in actuality over three days and there was lots of beer and likely tequila. There is no accounting for how long and tedious it would be if I told the absolute truth. There was also coffee and too much smoking. because i did that back then too….

Once upon a time, several years in the distant past I was great friends with several remarkable women. Every one of us was a military wife or widow or close to it, most of us had grown up surrounded by soldiers, airmen and sailors. We took on the task of teaching a bunch of Marines how to ride horses and in the hilarity that followed (And the many hours of talking that resulted) we came up with this analogy.
Is your thumb getting tired?
See, when you ready a hand-grenade to detonate you wrap your fist around it to squeeze it, push your thumb down on top to depress the button, then you pull the pin. If you do not wish to explode and die you have to keep your thumb on the button.
Is your thumb tired?
That’s your hand-grenade of temper or outburst. You keep your thumb on the top. The pressure builds…. stress, anxiety, the sock hamper, the perpetual ring of yuck that only you ever wipe but is never your pee….. Is your thumb tired?
Now. You can throw yourself on the grenade. You can throw the grenade at your squad, your kids and spouse, If you are lucky your best friend or your sister or your mom might push you aside and take it for you. Or are you the suicide bomber, rushing into the crowd exploding all over. Its your hand-grenade.
Take a second. Make a choice.

I remember that tall man reaching his arm around me and wrapping his hand around my fingers.
The best thing you can do is take a breath. Find your center, keep the pin handy and slip it back in place. Then you can relax. Take your thumb off. Set aside your anger.
Remember. You aren’t perfect. I’m certainly not perfect. This post isn’t about not being angry or not having a temper. Your ‘team’ is there for you, you take one for them they take one for you. That’s how it goes. But not the kids. Don’t throw your grenade at your children and when your thumb is tired and the pin is lost in the dust and ashes…… toss it at something you can’t hurt. Toss it away from your children. See it with clear eyes. It is a weapon for your use. Toss it away from your kids, duck and cover. learn.
So. Is your thumb tired?

**this post is part of me working through the Orange Rhino Challenge I’m not very good at it but I am here and trying…. because mayhem is happening I will come back and link nicely like a good girl. promise**

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Couch parenting…the solumedrol diary

24 Apr

It happens, you know? you’re trucking along, homeschool mama with a funky walk but you’re doing good…. and then disease flares up. At the infusion center I am the healthy one though. The lady with Lupus is flaring so badly and she’s just so sick and miserable…. I could have it worse and boy does it help to remember. But now I gotta care for my kid and teach him some stuff…. with my IV wrapped in vetwrap and floored by the heady mixture of MS and a full gram of methylprednisone in me. In my case it means my mouth is full of copper, im either starving or feeling pukey. my skin crawls and the fatigue of my disease is ramped by ten. Its going to make me better. It did before. It still sucks. So. My husband is a phenomenal man who helps more than anyone I know. But he has to work, and go to the bank…. and I still need to help. So since you don’t plan to be ill (although in my case I should) this is what I did. I got abcmouse with a one button kids mouse to supplement. I also 

1) grabbed my laptop. Youtube is a fantastic resource for preschool learning songs and videos. We watch something. Look at the title. Find the letters for each word on the keyboard. We then type them into the search bar, chubby fingers getting surer at finding and pressing each key. We say the letter sound. Then we read them. So. thats five minutes of learning on one TuTiTu movie called ‘Marble Race’.

TuTiTu

2) Lap trays. A nice big lap tray lets you craft simple things. Use a glue stick and sand/sugar/glitter to make the words. Or just markers. Let your hand guide the letter out while little holds it. bold big strokes. Then let them try. I allow scribbles and art enjoyment but over time he has chosen to try and make those letters. He’s getting better. he feels such pride getting the uprights on an M or making the point of his A just so. 

NEVER GIVE THE GLITTER BOTTLE ON THE COUCH we do pinch bowls because otherwise people will think you are an after hours whore house when they sit on that sofa for the rest of its existence  Hangs around longer than Florida sugar sand. If you don’t believe me that’s cool, it really is. I won’t judge you because my butt still comes up glittery on my own couch. 

3) Get a dog. I know that’s a bit out there and that not every family can care for a dog or afford one. Its not for everyone. But for me? this is why; When I can’t run and play? Tessa can, and she will gladly. When I can’t play catch all afternoon? Tessa can. She can also crawl in my lap and rest her head on me. Which also helps. We all walk together when I can, which is almost all the time. But we picked a dog that doesn’t mind. We also have a yard and a 3yo that wears her out fine. They are buddies and when I a too sick to run and leap its nice that I have this loving brown bundle that only wants to leap higher and run faster for her boy. Not bad for a shelter dog and some kibble and gravy (because yes. Im a sucker that makes meat gravy for the dog food. you got me)

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4) Remake their favourite stories

I write stories for him and we read them back. Not massive creative ‘when I was small my mom wrote harry potter for me’ writing. He;s addicted to Finding Nemo. I made up a three hundred or so word summery of finding nemo and typed as I went. He loved that. He said. LOOK I see da story being made! Then I read it and let him follow with his finger (lots of screen cleaning happens here) Now he wants that file so bad. Mama read da Nemo wid me. He gains sight words this way like sponges hold water. No ‘teaching’ or ‘forcing’ required. 

5) Netflix.

Look. Blah blah blah blabla TV bad blah blah WHATEVER blah blah. Whatever. My kid loves Super Why and Word World. He loves Mighty Machines. He takes the stories and plays happily with his imagination for hours. We read a lot. We play alot. But I’m sick sometimes. I am a TV lover. I allow things that you might be appauled at. Like Star Trek Voyager and Doctor Who. And Red Dwarf and Hoarders. This, to me is okay. If it isn’t or is elsewhere thats cool. The thing about TV is you can control it and it isn’t all bad. there is something and it gives your kids 30 mins of fun singing and dancing and (oh shoot me now) Wiggling. (Really. And if you see that evil purple dinosaur. I’ll give you fifty bucks you run him over. Oh the humanity. ) But its happy active time for kiddo in that moment when I can’t be and the dog has hidden in my bedroom (off limits to running children)

If you nap at the same time be warned that the songs will oooooze osmotically into your dreams. Not comfy when the Backyardigans start singing about your supermarket meltdown dream where you realise you went nude…. Thank goodness THAT never really happens in reality. Phew. 

Monday…. begin again anew

22 Apr

This marked the standing 3mo date with my Neuro clinic. In the intervening time we have moved house, survived the stomach plague that hit while my husband was post surgical and adopted a dog. Stress and infection triggers pseudo-exacerbation in most MS patients (I am told) but I had gotten better from that and now was getting worse. Luckily for my pocket book it built the week before my scheduled appointment thus neatly fitting it into one co-payment. YIPPEE.

This is a nice clean ‘Hollywood’ style clinic. It’s got a patio and real live plants. there are nice tv’s that soothe with blu ray nature documentaries. No shock horror intrusions for the patients here. After ‘walking’ or more like pointless people pinball played in a consulting room with five things to try and not hit….. some general listening, prodding and pushing etc. I was declared to be in relapse. Which probably is why they put the R-R in Relapse-Remitting MS right? Face Palm. I’m not shocked partly because despite the move and the illness I did not need help. I liked and enjoyed the assistance but NEED wasn’t a part of that. I could survive and care for my sick and injured clan. Now they are looking after me. The tasks are too draining and tiring. I hurt too much. I can’t feel my fingers and toes a lot. I cant stand for long periods. I am capable of each individual task if you don’t mind it being the only thing I do and it taking a while.

Lucky me my husband is a rock star. when I really really can’t. When the ball drops he catches it all before it hits the ground. For which he has earned ‘waiting in the car with a 3yo for a full hour’ at the infusion center the next three days.

I still have to school and cook and do some of these things so its time for me to fess up, stand up and figure out how. Its not ever going to go away forever. Its a cruel joke. Its the vanishing elephant and its still in the room even when you think you can’t see it. Its there. MS. One day some of it wont leave. Thats cool. You step up, Right? Grow….Reach upward. I’m thinking of my heroes. Of Superman. Of how I watched that fall. Of how, in my youth, I fell and it nearly changed my life forever. Of how he then lived. Lived not died or stopped or ceased to be. Of ALS and Parkinsons. Of the people of my own generation who are proving that it doesn’t matter. That you can lose it all, you can still live. This is a military town. Many of the people I loved as a child, as a young woman came home from wars missing bits and I go to the VA with my husband who has his veterans tags. Lots of people who woke up without bits of themselves there at all. So. This week is my ‘At least..’ week. At least I have legs. At least my husband is home to help me not fighting for our freedom. At least he came home in one piece and at least I am free, cared for and I will remit again.

This is new. This is me growing and like the caterpillar my cocoon is tight and confining. But to be the butterfly I need faith and strength and patience. My motto is Endurance. We Shall Endure. I shall endure. Per Ardua Ad Astra. It was on my uncles wall. Per Ardua Ad Astra. Through Struggle To The Stars. So. I’ll try to give it all to the Glory. Walk in my faith and in the heart of my family. Trust they will catch me. Begin anew and keep going till I get those wings.

And because I also need to write I will be here. Trying to heal myself through being real.

 

It’s Preschool Time

18 Apr

Well. It is finally time. Preschool years are upon me and I must rise to the occasion. My husband and I decided some time ago that our children would be home schooled and, until some future change of heart, that’s what we’ll do.

We’ve really been homeschooling all along but I would also say we started at the beginning of the year. I suspect that if I had logged the whole way Id have an easy start on the school year already. Instead I will keep a better track by recording it. Texas does not require such things but I do. I need to be accountable. If I couldn’t honestly show my mother then I probably shouldn’t be doing this.

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Glitter letters are the flavour of the week. We actually did this two days in a row, he asked Wednesday if we could make more sparkle letters. No fear! it occupied him happily for nearly an hour. Image

He loved squeezing the glue as I guided him through the letters. Best part was, of course, shaking the glitter bottle as hard as possible. Glitter, as my friends and I later discussed on Facebook, is like herpes. Is spreads like nothing else and you never really get rid of it. There will likely be glitter here for archaeological discovery. Which will really confuse things.

The glitter provided a great secondary distraction as its own art medium.Image

This amused him for some 30 mins on its own. Things were shouted about tracks and lines and the sand….. and how delicious they were, which resulted in some discussion about not eating things at random.

When asked his favourite shape he said

ImageTRIANGLE! and very enthusiastically sprinkled glitter all over it while making crane noises.

This was all a lead on from Tuesdays homage to the current Finding Nemo addiction. In which I point out that the butt is really a Image

I let him describe the component shapes and decorate them, then we got sticky with glue and we glued it all together. Elmer glue does NOT dry quickly enough, hence the goopy b.

We worked on matching and colours.

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We baked cookies and for once he actualy ATE one. Which made my heart melt. Especially when he yells ‘Mixa mixa mixa’ like Danial Tiger.

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And we got a puppy. Her name is Tessa and she has kennel cough. sigh.

ImageAnd thats what we did this week.

That and a lot of tv 😉

Its really all about me

17 Apr

I never said that till recently. Till I started this thing where I stop being such a bitch. Start being a better woman. It’s about me. 

I am the center of this because I am the only person that controls me. Its my choice. How I react? my call. You aren’t the boss of me. My husband isn’t the boss of me. I choose how I respond. Just what is it that makes me be rude or loud or impatient with a three year old who is behaving like a three year old? Its me and my selfishness. My unrealistic expectations of his behaviour. 

Why won’t you just?

Don’t you understand?

I make assumptions that everyone knows the list of rules that I know. They don’t. I wasn’t raised the usual way for a start and my world as a child and a young woman was very far from normal. I know this now and I am beginning to come to terms with it. My expectations and my inner-dialogue are actively making my world sad and dark. They hurt me and I don’t have to live there anymore. If I do? If i do another child will grow up like Alice in Wonderland and grow into a sad and dark place. Don’t get me wrong. I am fine and strong and well and healthy…. but I was damaged. It wasn’t anyones fault but it happened. I was lucky enough to also be loved. Thats why I really am okay. Okay enough to learn a different way. 

Because if I can fix the bits I band-aided over as a kid with new skills and ribbons to replace the bitter staples then, in turn I can prevent those wounds from marking my family. 

When I learn this thing, these healings will heal my family a little. Because they love me even though I am flawed.

When I look at my son and he isn’t obeying I need to remember: its hard to be good when all you want is to keep playing. He has a self and it has wants. This does not mean we will not have to go to appointments or take showers, or go to bed. It means I will not let your feelings make me loose contol of mine. I will understand. I will sympathize. I will listen to you. And we will still go to bed with clean ears. If it is not vital for the general function of the universe I will not make a mountain out of it. Childhood is short. I will guard yours. 

I will remember that I am not perfect. This will be good for you. I thought when I was little that if I was just perfect, did better. was more. then my nightmare life would get better. I could control nothing but myself then too. So since everyone wanted me to be good and perfect I demanded it and as a result was a failure always. Never enough. Not any more. 

I am not perfect. You are not perfect. I will tell you, you are enough. Because it’s true. Begone darkness. No more.

I will pray. Its not cool to love God in my family even though we were all church going christians and I went to a Catholic school. Complete with nuns. But I will pray because I need God. I need someone there who can always forgive me if I am fervently and ardently sorry. I will profess my faith so that I can heal this wound in my heart that makes me hate myself. I will purge this poison and fill the would with light. 

My husband says I am a saint. I am a sinner. He just doesnt see the cancer that tells me it. I am learning better to walk patiently and serve with grace. Its what I like and enjoy. Its hard. 

That truly is what I want. And its hard. And its not hard because of them. Its hard because of me. Thats okay. Acceptance is the first part of the journey. I accept you. I will be healed. 

On Diagnosis and the next bit.

28 Nov

I broke up with my doctor. My Neurologist specifically. He kept me waiting again, was an hour behind and still not near me. AND mine was the second appointment of the day. When I complained he came towering into the exam room to tell me to suck it up. And I did. Sucked up the little bit of a talking too my husband had given me about standing up for myself. Told him so. Got my records and walked out to the car. Then I found another doctor and got an appointment for a week from then. That would be yesterday.

Yesterday I went to the new Doctor. A reknowned Neurologist with a sterling reputation. They were kind and friendly and I even forgot to pay them. But the doctor looked at me and my notes. The inch thick MRI folder was sorted through. The one the radiologist said was normal. The one my former Neurologist barely glanced at. It was taken in May before Optic Neuritis hospitalized me. The new doctor said ‘this is abnormal.’ she looked at my negative test results and my thick thick file. ‘You have MS.’
I have MS. I am 30 and I want more kids. Thats what I told her. She said that’s okay. But you still have MS. She offered me Copaxone. I think they kepts waiting for me to say that I couldn’t stab myself every day. You hear it alot but that because they don’t know me. IVF was hard. the needles hurt. The tears hurt. Babies are awesome. My little man is awesome. I have MS. My brain and nervous system is damaging itself. Hand me the needle. I am so very terrified. I have a life I want to live. A husband and son and future plans. And hopefully Copaxone will give them all to me. Maybe it’ll be the right ffit and buy me some years and some babies and some school before I start really getting sick again. Some people get ten years.
I can have babies. She said so. That I must stope the drugs and not restart till i’m done nursing but that I can have it all If I just work hard enough. So I need to work hard enough.
But its a lesson. Don’t let yourself be a number. Don’t let them crowd you in like cattle and push you around. The Doctor I trusted with my health took the word of a radiologist. In a disease where the scars can mean permanent function loss that’s big. as in really big. I walked out of his office with nothing. I shudder to think of all the people that would be still sitting wondering if they are just falling apart for no good reason.

Things I Am Not Doing.
Giving up ANYTHING. Its a disease, It will be my constant companion but since when did that make anything the boss of me!
Crying. Not saying I didn’t have a good bawl. Not saying no crying period. Just not weeping in the window seat like this is my tower in Shallot.

Things I AM Doing
Learning to be more flexible with my body.
Pacing myself
Working through the tough spots with more grace.

Im not generally graceful. Im more… Doc Martin boots and jodhpurs with an apron over the top. This time however I need to teach as I learn and live. My child. Any future children I have will learn what this is, what a disease can take, from me. From how I react. I can be robbed or I can be empowered. I can fall over or I can ‘attack the floor backwards’.
I just can’t bear the thought that my railling and flailing at disease could poison a childhood. Or it can be the thing that teaches us all what we can do and overcome if we strive.

I haven’t told my mother. I haven’t told anyone that doesn’t live in my house that actually knows me. Because this is new. And hard. And there are going to be rough spots. I am strong enough but I don’t need to risk them saying otherwise, questioning my decisions.

The death of a Kia

7 Nov

This time last year I was about three weeks from total disaster. On the way home from visiting family in Alabama at Thanksgiving our Kia Sedona Minivan broke a belt, spun a rod and died a terrible death at dusk on one of the lonliest yet busiest stretches of Arkansas Freeway. And I had no roadside assistance.
I did, however have my 20mo little boy, drowsing in my arms on the shoulder in the cold as what felt like the entire world drove by without stopping. About five minutes after my cell phones rescue service said they had dispatched someone to collect me and van and take us to the nearest town a farmer drove through the field behind us. Right past us. Then he hit the brakes, tail lights flashed and he backed up. Leaning out of the wondow he told me he had only stopped because he saw I had a baby. Did I need help? I was all alone, my husband gone into the darkness to find a mile marker so that my tow truck could find me. I backed away. thanked him and told him what the tow people had said ‘Don’t worry. the truck is on the way’ and then I thought about that. He would gladly have left me there anyway. At least he had a thought for the little boy wrapped in blankets in my arms.
But there wasn’t a tow truck. Not for four and a half hours and no body stopped. No one. Not a trooper or cop ever passed either.
We were okay, they found us and the entire engine of the mini van was rebuilt after the words most epic tow-things-with-other-things adventure some week later.
And Now it has DIED AGAIN AND THROWN A ROD. And all I can think is. “i still owe on your rebuild’ and ‘Thank you God It died in town’
However we are the standard middlish class and hanging on American family and we have terrible credit brought on by a double dip recession a drought and $4 gas at the exact same moment. We climbed out of the whole and rebuilt ourselves but credit takes time and sometimes you spin a rod.
Which means no car but yay car payment and insurance times TWO now.
Which means the budget has to be adjusted as Christmas and Thanksgiving loom. Sigh. I’m trying not to pout and be petulant. I’ve already cried about it and yelled about it as much as I dare without traumatising my family more. I’ve called my mother and told her how much being a grown up sucks. She said ‘I know darling, I know.’
We did the budget and it works. That right there should be reason enough to celebrate. So many people have budgets that cannot work no matter how hard they try. So many people have so far from enough that I hate how petty and shallow I am. Crying over money I can ‘spare’ when others cannot feed themselves. But that was me yesterday, this morning. Crying of the the car rental thats getting my husband to the car lots. Crying about Christmas. Crying in general at the unfairness of it all. Even though I know full well that life isn’t fair.
It’s not or all those folks in the NE would be warm and safe instead of sheltering from yet another storm without heat and light. With holes in the roofs and their homes destroyed.

I need to learn to make more lemonade. I need to practice my thankfulness. My grace. My gratitude.

It’s not as easy to save grocery money for us. With the mix of food allergies and the fact that I have a zero tolerence policy on crappy foodstuff we can buy only ingredients. The worst one is my beef allergy. I can stretch beef further per pound then pork or chicken and I love it. Its a cheaper way to use meat and have red meat then the lamb in the store. I can’t hunt and live in the city which means venison is far from cheap. Pork or Chicken has become the meal rotation. blah.

So heres my Lemonade. I’m fixing it. I’m stopping bleeding grocery money. I’m fixing our boring pork/chicken rut. I’m going to smile and fix beans and rice like I used to. See I’ve been way way way poorer than this. So much so that it shocks me how upset I am about it. So grace.

Grace.
Patience
Gratitude
Im working on it