Health

Health

Onion of Time

onionThe past week can only be described as crazy.  Crazy fun getting to enjoy the special people in my life while throwing me into a crazy blur of confusion 😉

Our little townhouse/condo has three bedrooms. One is occupied by our roommate and the other is set up as a  quasi office/computer room. The main bedroom has our bed.  So what the heck do you do with three adults and one teenager guests?

When Billy, Trish, and Brandon stay they usually just pump up the air mattress and move the coffee table over and crash in the living room. Add Anthony to the mix and the situation gets a bit more cluttered. We found our other air mattress and Anthony graciously dealt with the cluster f mess in the computer room.  Sleeping situation solved we still had the logistics of everyone cramped into our small cluttered home. Eek gads.

Billy and Trish were here with the goal to help us clear out our large storage space. KRP is a pack rat and getting her to let go of anything is like pulling teeth. My goal was to find one box that I knew was in there somewhere containing things from both my grandmothers, my childhood memorabilia, and family photos.  Brandon’s goal was to go fishing and shop for fishing equipment while Anthony wanted to call everyone he could think of before he left country.

After two days of going through box after box the storage unit is empty – Yeah!  Clearing it out was like peeling an onion marking the times of our lives.  The deeper in we got the older the stuff.  Near the end I found myself getting in kind of a funk.  It was hard enough dealing with the fact that I was not able to help much with the physical aspects that come with humping boxes and boxes out and going through them and added to that I was looking at photos and mementos of what I used to be, what I used to do. Very in my face reality of how MS has changed my life along with getting older. Peeling onions does make your eyes water.

Now everyone is gone and the boxes of pictures etc. are freaking here more clutter, more crap to navigate around UGH.  Trish will help me next weekend try and get them put away but until then . …

I hung in there and made myself participate.  To the bass pro shop in Manteca, hunting for football jerseys for Ryan at second hands stores, getting the boat out of storage, going to Marysville to watch the races, all things I enjoy but I am exhausted as I kind of thought I would be.  Today walking is a chore, my brain is in dumb dumb mode, and I am generally down for the count.

It scares me that in future onion peels I might not be able to participate, that no matter how hard I try or force myself I will not get to share in the fun things.  I don’t want to be remembered as the stick in the mud who was pushed around in a wheel chair but as the one who took us fishing, camping, and was fun to be around.

My onion peel from last night will show me screaming and cursing at the races, betting on the winners and the losers, letting the kiddo buy the sodas and keep the change (a family tradition) the elephant was there but all of us managed to ignore it.  Super to have great family and friends – suck- o to have multiple sclerosis.

Pinky takes on the Green MonSter

IMGP0469_2006_03_01_2259_Some days are just like that eh? The last few have caught me feeling a bit blah and not quite right. Although I am not sure what right is anymore?

The latest wonder is I have woken up with my hands swollen. Now, is this a thyroid problem?, a overuse problem? a MS thing?, or ???? I sure hope it is a thyroid or overuse thing cause most of my MS things never really go away once the come. Numb hands doable, swollen hands – err – a real annoyance. I was lucky to notice and managed to get my rings of the other morning with a lot of soap and frustration. Bummer.

It drives me rather nuts at times when something goes wonky. I never know what the heck it is. Everything can not and is not always the MS. I need to chill out.

Next week I am going in for my usual blood tests and I get to have a bone density deal done too. Woo pee – can you hear the sarcastic tone there.

It would be really super fantastic to have a few days where something did not come up that brought this whole mess back to the forefront of thought. Just when I manage to not obsess, dwell upon, or think about stuff every few hours . …

Catfish is hanging out in the doorway with his royal orb of fuzz looking rather bored while I type.  I get up at night sometimes and if I can not get back to sleep I will either read in bed or get up and come into the computer room and browse the net until I feel tired again. He has figured out a way that we can get on the same page as to when I am done and am going back to bed. He drags his orb or his little pink hedge hog out and until I take it back into the room and set it on the bed he knows I am not done yet.

pinkyAndmp3playerA while back I discovered that pinky apparently needed to use the mp3 player LOL – Catfish takes care of his toys.

I think I will head off to read a bit as Catfish has replaced the orb with pinky – this is a serious call to play his little toe nails are pacing in the hall right now.

Once of these days I will have to get a video of him playing football with his orb. He puts it in his front paws and as I say hup hup he moves the orb back a bit and then forward. When I say hike he flings it back and out his hind legs.

It really is cheap entertainment late at night when everyone in the house is asleep but us. Catfish can become very determined to cheer me up when he somehow knows I am bummed.

So different stuffed toys with different meanings. The mean old ugly green MonSter and the little cute pinky. Right now Catfish and pinky are winning as I am busting up laughing now.

Blah, Blah, Blah . …

flower006I wish I had something marvelous, exciting, or at the least interesting to type but I do not, really.

Lets see -um – I saw my neurologist and there is nothing from that worth putting to type other than she was sure I was in secondary  stage not just considering it. Not sure what that really means other than woo hoo a new label.  I did get to impress her with my ability to make it 4 feet heel to toe in the hallway. I practice doing this everyday along the line in the tile in the living room. OK, it was a wobbly rendition of the drunk test walk but I did not fall.

I have been slowly filling up pots with soil and foliage. The little yard might end up looking like a jungle when all the plants grow up. I even planted a hanging planter. I have been trying to use old bricks to make different levels for the pots. I even installed a little drip system in the brick planter show  in the previous post. It is slow going and really wears me out but it gives me something to do. I do most of the work after the sun goes down so I get to enjoy being outside when it is sort of cool.

I got a prescripiton for a cooling vest that would fit under a life vest, one with the little carry along deal that runs it – put the insurance looks like it won’t cover it blah, blah, blah . … I kind of figured that anyways but hey offer me a prescriptions and I am thinking oh heck why not. It would be nice to be able to get out on the boat and fish. Who knows I might even catch a few bass.  Even with the top we have it just gets too hot too fast for me out on the lake and I am a firm believer in wearing a life vest lest I end up in the water.  Getting wet sort of works but the boat is not exactly set up to get in out of the water like a ski boat would be. Besides the darn water stinks after a few dunks.

Well, maybe the plants will bloom and I will get out there and set up the tripod and give it ago. That way I can set the shot up and use the remote so I don’t shake and wobble and ruin the shot.

This posts photo was taken in a parking lot a few years ago with the Sony F828 I owned before I got my Nikon.

Somewhere in the Middle

handIf you told me a year ago that I would spend most of the day upstairs on the bed watching TV and reading because the heat makes me turn into a cross between Gumby and drunken sailor – I would have told you that you had bumped your head! Man, this MS $hit $ucks.

Sometimes I think my life is Plato’s Allegory of the Cave in reverse. All of a sudden life is just a shadow of what goes on around me. A detached altered reality of sorts I guess kind of passing me by like the shadows cast by the fire on the wall. A question – is it better to see the “real” reality first and the shadows second or to have only seen the shadows?

Then comes clarity of thought, an un-shrouded focus, without fear, without panic, where I can stare the shadow in the eye, and I can live in this world on my own terms. And just as quick I am back to the the WTF stuff.

I wanna go ride my motorcycle, go mountain biking, hike up a mountain and take some pics, freak anything- something.  My adventure of the week so far has been making a trip to Costco and Walmart in the same day. My feet feel like they are on fire, my hands hurt, I feel like a snake is squeezing me, walking is a bitch today. Just a typical day.

Lately I seem to be hung up on history. It is neat in a way, there is a beginning, a story, and I know how it ends. Perhaps it is all the uncertainty in my life right now.  I find myself contemplating some dark subjects. The whole right to die deal, do I have the right to decide when enough is enough? Is it morally right or wrong? The jury in my mind is still out on this one.

Like those before me, my life has a beginning, a story, and eventually an ending. There is a part of me that wonders how long it takes before a photo of me is in someone’s album , just a memory. Right now they are reflections of the way things used to be for me.

Well for sure I am not going gently into the night.

It is not my style.