Multiple Sclerosis equals broken to me. Best definition I have today anyways. I really like Elisa’s song if only time would heal and we could be guaranteed the ability to get back on our feet and walk on.
A shout out to a pal:
So, it is October 1st and the weather folks are telling us that it will bit over 100 today. Some heat records were broken around Calif and hopefully we will go back to the mid to upper 80’s by the end of the week. Last time we had these higher temps in Sept. was in 1973.
Yesterday we had temps around 99 – 100 depending on what monitoring station readings you read. Seriously, I am really, really tired of the heat. Usually by this time of the year I expect a few cooler days to get out and about . … the cranes have arrived and it is still way to hot to go take a look at them. I still turn off the computer up here because the room temps hit over 85 and well that is just to hot really to take the chance of an electronic meltdown.
I have been dealing with a stupid ear infection for a month now. I unfortunately was seen by a ENT that was one of those docs that do not listen. Thank goodness when KRP called back the other morning to get yet another appointment and request a new doc (not always easy when they are a specialist) we found out that the doc is no longer there – can you say YIPPEE!!! The new doc was very nice and he listened and explained in terms even I could comprehend LOL. Another round of antibiotics – bleh. I have to time this set out. I take thyroid meds that you have to not eat so many hours before and after and this new med is to be taken four times a day with food. I have so many reminders and alarms (hard to hear) to remind me to take the new additional pill. Ummm.
I am going to adaptive PE three times a week and taking part in a Mock PT clinic on Thursdays at the state university. The PT students get practical on hands experience and we MS peeps get free PT – works for me. My friend Toni picks me up and we go together. At least there are two of us in the car as we circle and circle the parking area near where we all meet. We lucked out last time and found a space right out in front of the hall. the time before we ended up in no mans land. Now if we end up way out there one of the students will park and retrieve her car – nice.
I am noticing that many of same group people show up to the adaptive PE classes at the community college and programs like the one at the university. I am not sure if it is because they are aware of the programs via word of mouth or if we are a group that is determined to do all that we can do to help ourselves?
Oh yeah, I was kinda bummed about the death of Andy Williams but he sure had one heck of a ride on this earth. Here is a past post about our trip to Branson.
That is all I have for now.
I think of all sorts of topics for blog post while laying in bed right before I go to sleep. You will have to take my word that some of them are really awesome ideas – then again most of the time I forget most of it or change my mind about posting them.
Really, nothing exciting or earth shattering goes on around here most of the time. Once in a while I get to go on a road trip. As for the neighborhood excitement it comes and goes. I am getting much better at ignoring all the crazy and stupid stuff around here. I can even tune out all the loud voices most of the time.
I just finished reading for the second time almost all the J D Robb In Death series. Why not? It was something to do.
After reading a few blogs this morning I started wondering why (just my opinion here) so many people equate acceptance with surrender when it comes to dealing with MS? Just wondering. … yeah acceptance – not the legal sense of the term but the state of realizing that something is believable or true and being OK with it. I sure can not change that I have MS but being ok with it is not the same as surrendering and giving up. Not sure I expressed this well . … what say you?
I have wondering if everyone thinks the same – evaluates the same etc. . When thinking I can take a linear approach where my thoughts go from point a to point b. Or I can end up in circular thought pattern where when I go from a to b I end up back at a with no resolution like the old chicken and the egg deal. Then there is open thinking for lack of a better way to express it. Where my thoughts start at a and go to d, f , g – they ping all around. Often ending with the conclusion of point b but not always. I guess I start the process without an end point in mind? A closed system V an open one? augh so hard to explain really – and truly am not nuts really hahahhhah well at least I don’t think I am.
I have been playing:
Update: since typing this and hitting post the ghetto bird has flown announcing that they had someone surrounded and they should give up and come out and
I now get to go to a show tonight as Mikeys mom can not go woo hoo woo! I will be in good seats watching The Million Dollar Quartet
so something is going on around here!
One of the biggest things I about having MS that is really, really getting on my nerves is being broke all the time. Anyone reading this that is fortunate enough not to have a freaking chronic illness – no life on disability is not grand.
I know I post a lot about this broke or fixing something but what the heck else can one do? Stuff breaks and wears out (not talking about our aging bodies here) it just does. I modern piece of electronics only last so long. Furniture is not built as sturdy and cars – I swear my old 65 Chevy is still on the road (I know who owns it now) but newer cars just wear the heck out and they rattle a whole lot more as they age.
When things cease to function I used to be able to just pay someone to fix it or go buy a new one. Now that is no longer an option. It takes money. Those of you no longer able to work and have to rely on disability insurance probably know what I mean. So here I am broken stuff and if I want to have it I have to fix it – oh gasp.
I have always been pretty good at figuring mechanical things out. I figure take it apart and see what makes what do whatever it does. When I was a kid I dismantled my clock radio and wired it up to some speakers and then my tape deck. I remember taking my parents console stereo apart and trying to wire my tape recorder up to it so I could hear my music I recorded off the clock radio – ugh you know I sort of remember it really worked well but my parents did not see it the same way I did – opps. My brother did not like the alarm I made for my bedroom door with a health kit.
Now I have a hard time taking stuff apart with all the tiny screws and my numb arse hands. Then my pea brain forgets what I was doing so I have to draw little pictures and label all the screws. Very annoying.
So today I was playing my new Xbox game and the dang machine made some funny noises and then the message on the screen read – disc unreadable – well all be &**)&^%%^$^ . I ejected the disc to find it all scratched up. This is not a good thing. One I really get into my games and now I can not play it wah wah and two my xbox is broken. So after pouting about I called around and found out the cheapest one was 199.00 – OH NO!
And this brings me to the point of this post : while MS has led to my being broke and my little fingers and brain don’t works so hot at times – I found something out – if I thing real hard about it I could say the MS has made me a better tear it apart and fix er up gal :). I would never have bothered to even attempt to take a stupid xbox apart if it were not for MS. I mean really? why would I when I could buy a spiffy newer one. The new xbox 360’s have built in wi fi even!
Ok after all the bitching and moaning – yeah pouting did not garner any sympathy on the monetary front – Catfish and I went about tearing the thing apart. I now am very aware that I should have cleaned out the fuzz bunnies at least once or twice in the five years I have the thing. Did you know that fuzz bunnies can kind of cling together and form hard little dust balls?
How do you take the cover off an xbox to get to the insides well it is not easy but youtube and all the nice kids on there were nice enough to show me how. To really get to things you have to unclasp the top from the bottom, remove the sides and unscrew the inside from the bottom outside. Fuzz removed before photos taken as well I would not want the silly thing to be embarrassed or something.
Then there I was staring at the DVD drive ummm ok there it be. Turns out it just pulls up out of there.
And yeah that is a Indiana Jones Lego game playing but hey when testing why toast a good game when you can chance it with the kids game! It works! Now I just need to find another copy of my Mass Effects.
Well there you have it my big attempt and crediting Multiple Sclerosis for something good.