Sunday, April 20, 2014

Happy Easter EveryBunnny!

Paint your pagan eggs, get dusted with soot, dress in purple, or whatever we are supposed to do today...GORGE ON CANDY and HAM!

Headache, don't get to spend Easter with Family (I have to work @ 3PM-10ish) I harbor back to memories of church dresses, special pancakes Nana made me and coming home to Easter baskets that had antique toys that had belonged to my Nana and Uncles that we had to leave on the basket on the couch so the Bunny could "bring them back next year and make repairs" 

Finding chocolate eggs MONTHS after we thought we'd found them all, Easter grass coming out of the cats butt, the kids in the neighborhood having an Easter egg hunt with shared stash and high school kids offering to hide it ...then later setting up the same later for neighborhood kids, nephews and nieces. 

I remember our dog finding the eggs, sucking them until only foil was left and spitting it out.  She and later HE were very good at finding chocolate eggs..thank god we always got the kind that only made them have the brief runs!

Now it is just me, the hubby and the fur brigade.  I dyed Easter eggs with a clients kid, who BTW had a TON of fun doing it, I thought about dying a few eggs, but I hate hard boiled eggs so...

Huh, I guess Easter is growing on me. WELP!  time to try and bust out a grad paper, dress the dog in Easter ears and take his picture, because everyone needs traditions, and get Chris ready to go with his sister and make sure he remembers the treats I bought for the girls.

Happy Easter everybunny, now send jellybeans.

Friday, April 18, 2014

Rode hard and put away wet: the story of my carcass

So in my youth I spent a lot of time pushing my body.  Running, Skiing, Mountain biking, Martial arts, Rugby, Firefighting, basically doing many things in which I hurled my carcass heedlessly into many situations that ended in breaks, concussions, sprains, muscle tears and other things. 

When I was 27 I was an interior firefighter who ran 5 miles 5 days a week and ate whatever I wanted.  Then one day I couldn't lift my right arm.  At All.  Nothing.

Doctor spent a year looking into why, then I started getting migraines, and chronic ankle and knee pain.

Doctor found that both my lower back, hips,both feet and knees had been cracked/broken so many times they had healed incorrectly and were covered in bony spurs called osteophytes.  He gave me a handicap pass immediately and told me I would never run again.

An MRI later he found a tear in the center of my spinal cord, a disease called Syringomyelia.  It was why I was having intermittant trouble lifting my right arm and having chronic chest pain which later turned into intermittant postural tachycardia. SUPER fun by the way, get out of your car too quickly, heart is hammering for a hour, lie down in bed and rool over to fast, heart hammering keeping you awake, Sneeze? yeah good chance your going to feel like you are running a marathon for a few hours.  Pneumonia + Stairs =  super hilarious.

I am 35 now.  I know 35 year olds who work out every day, eat 1200 calories, keep a clean house and have 40-50 hour jobs.

I am not one of those people.  I work 27-30 hours a week, and it is tough.

Over time my hips, knees, and ankles have been rebroken, without me being able to tell because of neuropathy in my legs from my low back I didn't have them treated correctly, I pulled an old karate move and "walked it off"

My doctor prescribed swimming, which I loved, until my skin started reacting to the pool chemicals and making my eczema flare up year round and put me on oral steroids just so I could drink and eat (ever had eczema on your tongue and try to drink anything but water or eat bread?  yeah not happening.)

Now before you get the wrong idea, I am not complaining.  I have the BEST memories, a black belt,1,000 ways to kill a person, can fix my own bikes and friends, and a whole new outlook on how to be tough.

I also have this lesson.  BE KIND TO YOURSELF.

i did all those stupid things when I was a young athlete:  dieting, anorexia, pushing myself to the point of injury, pills, ignoring doctor's advice.... I did all those things and I still have to mentally slap myself for the damage I did to my body and the fucked up thoughts and relationships I still have with food and exercise.

At one point I remember my best friend and I bonding over our love of trucker caffeine pills because it helped us to burn fat and calories.  We were in high school and a sports instructor gave them to us telling us it would help us to "win, because we were not there to have fun, we were there to compete"

I wake up every AM and have to do about 15 minutes of stretches in my bed before I can stand and go brush my teeth.  In the winter often my legs, back and arms are so painful I take 3 or more hot showers a day just so I am not taking deathly doses of anti-inflammatory meds.  After cleaning the house or doing exercise I spend at least an hour or more rubbing and stretching before I go to bed so that I don't wake up with cramps.  I sleep with a cut off pool noodle under my pillow because otherwise I wake up with my right side numb.

I still struggle to eat 1200 calories a day because the only thing my body craves is sugar and water.  I struggle to get enough protein to help to keep my lean muscle mass up.

It is a struggle each day to get up, get my life in order, and not do myself injury.  Sometimes I think about getting even older and I am terrified because often people with Syringomyelia suddenly go paralyzed on one side or below the waist.

So I adapt.  I plan out meals and eat even when I am not hungry.  I always set up my food to be 1/4 protein 1/2 veggies, and 1/4 whatever else I want.  I have special plates that I love that I eat off of.  I get a little crazy when other people use my plates or watch me eat...put baby steps.

I try to watch TV while I am doing my hour of stretching, hour of "conditioning" (AKA horrible sit ups, leg lifts and other exercises designed to lengthen and strengths my joints and tendons that were damaged)

I wear a heart monitor when I work out so that I don't go over my reccomended BPM and trigger my tachycardia.

I am careful, careful, careful.

You adapt.  You replace running with yoga, replace dieting with learning how to cook GREAT food, you teach yourself that pain is a sign that something is wrong, and you forgive yourself for not being a super human

No Tears, No Regrets, celebrate little victories.

Now its time for my 2nd hot shower of the day and to do my night stretching so I can sleep tonight.

Life is hard, be kind to yourself.

Tuesday, April 01, 2014

Oh day of few spoons...Syringomyelia sucks

This is for my friends with Syringomyelia and Chronic pain solidarity sucks.

It has not happened in a while but today BAM! it happened.  I woke up head to toe pain.

Its complete lack of spoons day.  Which is only alleviated by numerous hot showers, drugs, and sleep.

The reason I am doing a blog post about this is because while most of my friends completely understand my Syringomyelia and its plague beast of associated conditions, there are some who are skeptical.

So I wanted to write on a day where I was in pain.  mind erasing, not doing anything, *dog can poop on the floor because f*ck you stairs* type pain.

Last night I went to sleep at 11AM.  Normal time for me.  Took my medicine, my supplements, my vitamin, and had my night shower to relax my muscles.

Woke up this morning opened my eyes and first thing I thought was "My head feels like someone put on a heavy metal crown and cinched it to death around my skull"

I immediately tried to eat a graham cracker to take some tramadol and ibuprophen.  Then threw it up.  Then waited for a few hours tried again, threw up.  If hubby was home he would bring out the shop vac so it was easier for him to clean up when I miss the toilet completely.

Finally I managed to take some liquid benadryl, ate a graham cracker, kept it down (HUZZAH!) and ate some naproxen and tramadol and kept that down (HOORAY!)

So I am finally on my feet.

Breakfast!  Shuffle to fridge pick up yogurt, drop it, pick it up again, drop it, pick it up with both hands cradle it to counter, can't peel back the lid. (GRRRRR!)

Finally I get frustrated and remember the graham crackers are open (YAY sustenance!)  So after a filling breakfast of crackers and water (tap not rain) I try to take the dog out.

I lean over, I get dizzy, I stand up, I get dizzy, finally I sit on the couch, and manage to coax the dog over and clip him to the leash.

We slowly walk down the stairs, go outside, do our business, I nearly fall over when scooping his dirty sinful business but Kayne knows to stand next to me so I can hold on to him.

We walk up the stairs and I try to make the bed, Kayne trailing behind me as he does when he knows I am ill.   I am abl to stand without being dizzy! except today my hands hand decided that grasping is not going to happen. I finally manage to flop and maneuver the bed into some semblance of being "made"

By now my arms are on FIRE, I am nauseous, and dizzy.

I lie back on the bed to catch my breath and the dog stands over my face and begins to whine.

Sh*t they need food.

I manage to dump water into bowls and food into trays only spilling when an over eager cat head butts the scoop out of my hand sending an arc of dog food spilling onto the floor.

Again, Kayne knows me so he and Dodger dutifully clean dog kibble off the floor.  Yes, I am a mean horrible mommy today.

I finally sit down in my chair and take note of the rest of my body:

Head: dull ache but I can be upright
Hands: aching and shakey
Shoulders, chest, ribs, arms, back, hips, thighs, calves, feet: FIRE, burning electrical non stop FIRE.

I text hubby to please bring home bread and black tea bags so I can start making iced tea (spring fave in this house) it comes out " plwas brung hyme brad an blwk te"  I stare at it, decide he can decipher at will and press send.

I have not managed to clean cat boxes, or clean, or sort laundry, or do anything beyond basic level.

THAT is a day without spoons brought to you by Syringomyelia.  It happens once a week normally but sometimes up to 5-6 times a week.

So next time you make the joke "You are lame, you don't do anything!" remember you are not far off, but I did do something, I got up and told you to shove it.

Monday, March 31, 2014

Klaude Wesley Armstrong

When is a picture more impressive that it seems?  

We caught Klaude in a feral cat trap.  While he did let me touch him, he had a slew of behavior issues.  He would only let us touch him on his head for about 3 seconds.  He would swipe and hiss as soon as we turned away from him, he his constantly, and would not sit near us.

 That was 6 months ago.

Each day I would brush him for 2 minutes going closer to his nether region and closer to his belly.

After 30 days he let me touch his belly

60 days he let me hold him

90 days he would come sit next to me and let me wipe his butt with wipes.

120 days he let me wipe his eyes and face

Now he lets me brush him, pick him up, wipe him bum, and sits next to me every chance he gets.  He even cuddles with his son who we rescued before him:

He explores and sleeps wherever he wants!  "Dad, find your own chair, I claim this one"

He sleeps with me every night.  "Whoa, who knew mattresses were so comfortable!"

He PLAYS now. He jumps and EXPLORES now.  He wakes me up with kisses on the nose and taps his paw on my nose to get me to pet him.

Yesterday he let me clip his claws and didn't try to go for the face.

Today he let me kiss his cheek without starting or being scared.

THAT is why the picture is so important.  He went from being afraid, sick, cold and alone to being a normal loving happy CAT.

Saturday, March 29, 2014

Werk and being a wounded meat bag

So my "normal" work week is  thur, fri, sat, and Sun and is about 25 hours.  But almost every other week I get meetings, babysitting, dog training, and extra coverage tacked on and it ends up being closer to 30 hours a week.  Which is fine, because: money.  The thing that is not so great is that my huse begins to look like squatters live here, or that the animals have taken over and we are 2 mintues from a lord of the flies situation with the dog as king, the cats head on pikes and hubby in the corner eating fruit cocktail out of a can with a broken spork.

It takes me longer to do things.  Laundry, takes longer because sometimes my entire right side is numb or decides today is not a ___________ day (walking, grabbing, bending, lifting, being able to detect hot or cold) Every damn thing affects my body; dust, dander, rain, heat, cold, etc...add on that I am spening most of my work hours in my car driving, or in a house cleaning, or at a gym working out when I get home or have 2 days off I literally have to resist macrame-ing my ass into the couch and refusing to move.
I have been trying to do 6 days a week cardio and 3 days a week resistance training to keep my body loose and muscles in shape, strong core, and muscles means less chance of me falling down, straining something and not having a working skeleton to support me. (I am in general a walking meatbag with broken bones assembled inside)

So to people who think I can just work 40 hours, (because you do that, and have kids, and work out, and go out, and volunteer, and nurse baby squirrels back to health) I say I wish.

I enjoy working, I enjoy doing a job well, I enjoy being able to pay my bills, have insurance, and have a place to go where I am providing a service and doing it well.  I liked working so much I used to work 60 plus hours a week AND was a volunteer firefighter.

Now, I have to accept that my mind likes work but my body can't handle fulltime (It can't handle cheap beer and staying out until 1AM either)

Mix in being older, mix in anxiety, mix in being a shaken jenga puzzle covered in ground chuck, sealed in plastic wrap.

The mind is willing but the body gives life the finger.

But we endure, and I hope we can be kind, see things from all the angles and accept that for myself, and many other people living with Chronic diseases and disorder, there is always a will, but the body is in the way.

Be good to yourself,


Tuesday, March 25, 2014

Jessica Polly Sally Levering

There are those people you meet. You don't get to spend a ton of time with them but you know that you will always hold a special place in your heart for them.  Jessica was one of those kids for me.  Jessica like myself had a chronic degenerative illness, unlike myself she had never known anything other than a life being sick.

I met her while working at the Westcott Community Center as a volunteer coordinator and teaching arts and crafts to the kids coming there.  Jess was one of those kids, and we bonded over our total love of animals, being less than healthy, and being devoted smart asses.

Jess didn't come in a lot, she was a young kid, so while I loved seeing her I didn't try to get overly involved in her life because she was a young kid, I was an adult it would be more than a little creepy to be saying "this is my 11 friend" as a 28 year old woman.  But I would see her out and grill her about our mutual interests, swap stories about animals, soak up her whip smart sense of humor, and laugh at her smart ass comments.

We were friends, with a unspoken kinship that was not obvious.  I remember one day going into work and sitting in the office, my migraine had gotten the best of me and I was throwing up in the office.  It had been the third day of throwing up for me and I was tired and in pain and on the verge of tears.

Jess walked in looked at me and said "Oh come on, at least you didn't crap your pants!"  I immediately started laughing, wiped my face cleaned puke off my shirt and said thanks.

I remember after a while she started high school, got a boyfriend and had more stuff she was doing, I had a new job, surgery, and my own health crap that took my entire attention and we fell out of touch.  I saw her infrequently and her dad often and made sure to ask about Jess and he would relay messages to me.

Today I found out Jess had cancer two years ago and had died.  Her dad had tried contacting me via an old cell and house number and Westcott email that no longer worked and assumed I moved. He said "I am so sorry, I wish I could have gotten in touch, I know she wanted to see you, I am so sorry."

I must have gone through all the stages of grief in about a minute and got stuck on anger.  Jess was a kid who I was excited to see what she was going to do.  In her too short life she proved being kind was always the best policy, laughter can make anything better, being funny is infinitely more important than being pretty (her words not mine, I used to joke that I was drag queen and therefore gorgeous) and that when life Jess quote "Gave you the shaft" you had a choice to make each day a good one, or sit in the dark crying and feeling sorry for yourself.

In short, Jess was just a awesome, cool, smart, funny kid who should have been around longer.

It feels like her life was like a short match, lit, burning bright, catching your attention then suddenly snubbed out by a dick known as cancer.  Not cool man, not cool (another Jess saying)

I only remember Jess being serious about being sick once.  We were sitting outside on a picnic bench at the WCC watching the kids play football.  One of the younger kids asked Jess to play and she said "I can't do that, but I will cheer for you!"  the kid smiled and walked away and I sat next to her not saying anything just enjoying the warm weather.  Suddenly she turned around and said "I know what they are thinking, you know. "  I asked her what she meant.  She said "I know I am sick, I know I might not going to grow up to be an old lady. This is not some BIG secret."  I asked why she was talking about it and she flapped her hands like it was not important and continued "I think about it, when I see those older girls in college, older girls in high school.  I try to think of myself being a college kid...I don't want to think about it, but I do."  I made some sappy remark about how no one knew how long they were going to live and that I could be hit by a car tomorrow or struck by lightening.  She laughed and said "Yeah, thats true, life can be *snaps her fingers*! but we may be OK you and I because we already got struck once! No waiting for something bad to happen, it happened, so deal with it."

This tiny person who never ceased to make me laugh, never ceased to call me out for being grumpy, and always showed nothing but kindness and humor was struck twice by lightening and that pisses me off.

I wish I could channel Jess right now and find something positive out of this but the truth is that this is a loss, it does not make sense and it doesn't seem fair. 

Jess was a friend, who had an illness but loved animals and had a sense of humor that gave me LIFE.  She believed in being kind, she believed in being smart, and she loved big and found enough to share with a person she barely got to spend time with, I feel lucky that I got to meet her and get to know her for the brief time she shared this world with us.

That said, screw the zombie apocalypse, the real apocalypse are these illnesses that are taking lives and doing it fast.  I think it is time to as Jess would say "Put on my big girl panties" and make a go of this Kind Outreach thing.  The last thing we need is another charity, but we need money for these charities.  Charities that help people with rare diseases.  When is the last time people donated as much money to a charity as they did Kickstarter for a Veronica Mars movie?  (Don't get me wrong I am stupid excited about that movie...but lets be real Diseases vs Movie, diseases should win)

So Jess, I am ticked off that you were taken off this planet, because this world needs more people like you, but I hope that you inspired people to be better, to do better, and to laugh often and be kind.

I know that what you did for me, and for that I am happy I knew you.  

Monday, March 24, 2014

The meltdown

So the thing that stopped my fitness before was illness and injury.  My current trainer/PT/LPN thinks that I may have overdone it because I didn't see instant results. 

So I was under strict orders, if I have a headache, I take it easier, if I am in pain, I take it easier, and I don't over do it to try and "compensate"

There is where the injury goes beyond working out too hard, it goes diet wise too.

Don't get it twisted, I will never "diet" again.  I am only following a few rules food wise:

1.  Half plate veggies.  If you fill up on veggies you are fuller longer and they have nutrients your body needs.

2.  Tea, Water, or nothing.  I cut out alcohol (except on special occasions) carbonated beverages, and fruit juice.  If I want juice I will eat a piece of fruit

3.  Say no to processed and GMO.  Will I ever cheat and have a donut? one yes, three NO.  Will I ever eat a Oreo cookie or an PopTart again? Probably not.  i found what those sugars do and besides NOT satisfying any craving, they are never as good as I think they are going to be.

4.  Drink before cheating.  I mean water or tea perverts.

5.  If you are going to eat something "bad" eat it before noon.  If I want a donut I am hiking my ass down the street before 10 AM and getting it local

I also have some working out guidelines like getting one day of "rest" or no heavy workout
daily abs for my back.
Looking to have clothes fit better and have more endurance, not to LOOK like anyone else.

Today I literally was vacuuming with a headache thought to myself  "I really need to stop, my head and shoulders are killing me" and it took the vacuum physically falling and smacking me in the head before I said aloud "Oh, I need to stop NOW!"

I took the rest of the day to prep a meatloaf, water plants, get a haircut, dye my hair, and walk to the library and I don't feel like I "wasted a day" or was 'lazy"  I was talking to my therapist about that feeling and how I was proud of myself, he joked "You must have trimmed off some stubborn too!"

It is probably the hardest part of being a "walking cripple" I may look fine and be dragging myself from trash can to trash can that day.  BUT hopefully I will be able to keep up my 24 hours a week job (maybe even afford insurance) and be OK for a little while until the next hurdle comes.  For now I have my health, my pets, and a husband.  We will say I am content, which is a milestone for me.