Health

Health

Changes Ghost Of MS

This is the time of the year where all the seasonal hoopla send my mind to contemplating the past year. The year in review thing runs through my mind constantly. This year I am stuck on all the stuff/things that have changed. Mostly because of having MS.

I do not go out and walk the trails along the river to take photos anymore.  A few years ago I rode my motorcycle along the river road and pulled over and snapped away. Now I can get all turned around in the delta and put forty extra miles on my truck trying to drive my way out of the proverbial wet paper bag.  Walking down a levy to water side and later finding out that my uncooperative legs do not really thing going back up the levy is part of the deal.

I used to never ever read a series of books out of order. Read the first, second, . … etc. . I never could understand how someone would read the third in a series and then go back and read the first. Now I do. First off, money- hello why pay twenty bucks to get the newest in the series or $7.95 for the first when I can hit the Goodwill and second hand shops and pick up the same book (albeit slightly worn).  Yep, I have less than half of income I did when working full time. SSD is not living high for sure.

I am finding that I enjoy reading the series out of order.  It may be the reason I like history. It is super to know how it turns out. No wondering if character A dies if they are still alive for books later in series. I really like knowing how it turns out.

My significant other’s company was bought by what I call the evil empire of doom (Karoli you are probably the only one who knows which company so shhh) they are so ugly that I am afraid to put their name here as who knows who might read it? They are doing the usual for this economic time but they are doing it to the long time full time hourly employees and not the part timers. After 30yrs she gets to work all lates and maybe they will cut the hours to 32 a week -and so does the other long time employee with a special needs child to care for.  oh happy joy joy.  Last year we spent Christmas eve and New Years day together. Now I get to watch the boob tube while she works because the new company stays open on holidays.

The problems that trickle down to me include dealing with a very unhappy stressed out partner to forgetting to take my meds, to eat etc. Amazing how dependent I am a consistent routine.  We had our personal quite times and together times all worked out. Seems now she is downstairs doing her thing at the time I would be doing mine. And I am ready to call it day by the time she winds down from work and honestly I am to freakin tired to carry on a coherent conversation. Apparently somewhere my cues to eat, take my meds have disappeared.  My routine is shot to hell.  I am not sure how to fix it LOL I can not sleep later as soon I start the PE class in morning. I have never in over 27 years seen KRP this down and it scares the heck out of me.

We bought TV dinners to cover the nights I am to dingy to cook. And I spent hours researching medicine reminders. I figured out a watch type deal would work the best for me. Most of them require the turning and pushing of tiny little buttons to program and are real easy to accidentally hit the wrong button when turning an alarm off. Just what I need eh? I did find a Timex that is programed via the computer woo hoo! Not wanting to order something on the net to find out it would not work I googled and googled until I found a shop in ‘Vacaville that had two of them in.  KRP took me there tonight and I spent Christmas money and bought one and received 30% off because of the after Christmas sale.

It took a whole hot 5 mins to load the software and enter my reminder alarms.  It beeps and the screen text tells me what the reminder is. Beep beep take your neurontin, beep beep – eat on so on. I can even sync it with my Outlook calendar. The only negative that is apparent right off is that it takes a special watch band. I am going to order two so I have them. All I have to remember now is to put on the wrist watch.  I stopped wearing one a few years back.

Wish I could see how this life of mine  turns out ha ha.  Like the ghosts of Christmas past, present, and future.  Only I got stuck with the Ghost of MS.

I swear I have lost IQ points this year.

I am A Snow Flake

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Photo by: CaptPiper

I am a snowflake yes I am. No two snow flakes are the same just as no two people’s  MS is the same either.

Just a super thought I came away with tonight after hearing Dr Dunn speak at a presentation sponsored oh gasp by a drug company LOL.

We drove to Stockton and met our friend (another MS’r) at the motel where it was held. Usually these presentations are obvious drug pushing orientated this one was very tame in that dept.

Dr Dunn comes with strong credentials and spoke mostley about why it was so hard to find a cure for MS and what he felt worked and what did not. IE mice probably not much help when it comes to research – that humans will be where the cure is found – well I thought to myself DUH.

The most interesting part was some of the new research that will be going on a Stanford U. Their site is down right now so maybe I will link and explain it laters. But the research will be looking at human blood, as soon as it is ready to go I am there I will give em all they want and then some.  Maybe the immune suppressing stuff just is not where it is at not that I am an expert or something but I have never logically felt that it was gonna be in the end – but guess ya never know. A new one for me to research: proteomic analysis.

Anyways, I like the snow flake analogy so there it is. Coolness of the good kind. Here in Sac we dont really get very many presentations that offer the opportunity to learn and ask questions of some of the nations top MS Dr.’s unless they are sponsored by the drug companies –  yes they have the money to do so – I think that kind of sucks that drug companies akin to the evil empire are they ones who provide the opportunities around this area. The big society sure does not unless you head for the bay area. . …

Well that is it for now.

I am a snow flake tee hee

Sand, Shots, and Scooby Snacks

DSC_2143_webCatfish knows that we are taking off again. He gives me eye as he watches us pack the suitcases and gather up the goodies to go.

I love seeing the kids and watching the youngsters play football, practice casting while dreaming of the big bass, and doing what teenagers do but I so dislike driving there. Weren’t we just there I say.

I guess the idea is to get in all the time we can before the winter sets in and travel becomes a crazy flurry of snow and ice. Remember I am a California Valley gal who got stuck in Nevada a couple of years ago for weeks. Two wheel drive truck would not no matter how hard persuaded make it off the property to the main road – it hates frozen sand as much as I.

This week getting up every morning and calling the flu shot info line payed off and I now have been officially stabbed with the needle. Checking the CDC website it became apparent that they were running low. As soon as the tape said I qualified (that can change in a few hours) I got my arse there. Since I had already received my regular shot the line for the H1N1 was short and moved quickly.  I think we were lucky in a way that KRP was exposed at work because we have Tamiflu in the wait. Thank goodness neither of us needed it.

My friends have been busy teasing me because I was calling the number every morning and urging them to do the same are not so vocal now. All of a sudden with the numbers of the flu cases going up and the availability of the vaccines going down . …

Seriously, the flu in general is not a good thing for compromised peeps like me. While it is a personal choice to get the shots or not this winter is looking grim in the H1N1 area. Don’t assume that your government is going to take care of you. Some states pandemic plans triage guidelines contain clear cut language stating that folks with medical conditions will not be admitted to hospitals  – nice thought eh? They already placed an EUA on Tamiflu, and Relenza and the vaccines. Hope you all take care.

Ok enough of that now – off to load the camera gear as KRP loaded everything else early this morning – and head off to pick her up from work and head off toward Nevada.

Our roommate is taking care of the dogs so they will be well spoiled with Frosty paws and other scooby snacks while we are gone.

OINK

fluWell ignoring all the steps my paranoid mind set in play for me the freaking H1R1 exposure has arrived. That really bites, it makes me nervous.

I suspected that it would, I was just hoping that it would not happen until I had the chance to get the shot . …

When employers have sick policies that encourage employees to not call in sick it is rather obvious that eventually someone will spread their germs to other employees and customers no?

I think it sucks. My sig other worked with someone who up until yesterday when they and their family were hospitalized with the Swine Flu – oh yippee!! Go figure if you call in sick with or without a Drs note you get a point – three points and your out! So wonder why someone would show up sick eh? I am not sure whether this person knew they were sick but I suspect so.

Ok I am pissed about the above fore-mentioned. But I am more freaked out that we may get sick. Well Shit. I am not so sure I would fair to well if I do. Thank goodness we have not been around my parents or any other not in so great heath friends this week. Just so you know this all goes with the regular flu or a bad cold also.

I used a lot of anti germ spray today while freaked out ha ha …   now is this head ache and nose run because of the new cedar dog bed downstairs or ? See I am freaking like I said.

The CDC recomendations:

  • Cover your nose and mouth with a tissue when you cough or sneeze. Throw the tissue in the trash after you use it.
  • Wash your hands often with soap and water. If soap and water are not available, use an alcohol-based hand rub
  • Avoid touching your eyes, nose and mouth. Germs spread this way.
  • Try to avoid close contact with sick people.
  • If you are sick with flu-like illness, CDC recommends that you stay home for at least 24 hours after your fever is gone except to get medical care or for other necessities. (Your fever should be gone without the use of a fever-reducing medicine.)
  • While sick, limit contact with others as much as possible to keep from infecting them.

So, all you sick ass peeps who come to work and the company policies that favor your inconsideration – I have a long list of words that I can not type here because I want to keep my safe for all readers rating.   Hope the extra day worth of pay was worth it.

Ok – I am done ranting for now LOL