My highly edited blog posting

Here is at least a little bit of an overview of the last 6 months. I have incurred at least 1k worth of damage to my car in external and internal vandalism. Many items have been removed from the car after a long series of incidences.

I have had at least 500 dollars worth of things taken from my apt. There has been destruction of walls and fixtures. Many photos were stolen or destroyed. The carpeting was ruined and I was asked to pay out of my own pocket to shore it up.

There is much much more to the saga of Twisted Pines which I cannot talk about here because I don't know who is reading this blog.

"M.R.I. results are in"

The results are in. The mri's of my brain turned out perfectly normal. So, I still do not know why I have/had the following symptoms: weakness, walk into walls, dizzy, falling, migraines, seizures, tardive dyskinesia, and not being able to stay awake or even so much as hold my head up!

This is just a smidgen of my symptoms that I've closely recorded for the last 20 years...............

I now have a pain management doc. who i met once. I told him today that it is not an acceptable quality of life to be in round the clock excruc. pain with debilitating neuropathy in all limbs. He wants me to see a rhematologist and an endocrinologist and have a bunch of blood tests to try to figure out what's going on.

When he did the typical strength tests that many of you have done to, he said that I'm "very strong" I said how can i bee so strong when I'm too weak to even walk or do dishes. He said that's not weakness that's fatigue! ? oyyy.

I was totally prepared to have to pay a co pay today and they didn't ask for one. Whereas when i got the mri done i didn't think I'd have to make an up front payment but was asked to pay 160 dollars. One of the girls on my fibro support group site said she had to pay 600 out of pocet for her mri. I asked her what she would have done if she didn't have the cash?

The system makes no sense to me. Anyway, I guess I'm "lucky" that with being on disability I have one of the best insurance plans in the nation. Not feeling so lucky. But I do feel that I earned that insurance coverage. I've more then "paid the price" to get where I am................

Have you seen Moore's "Sicko" documentary?

The Bachelorette

I'm not totally caught up yet. I'm watching them out of order on the internet since i don't have a t.v. So, I do not know what happened this past monday.

But, I just love Ali. cute little laugh, nice to look at and very sweet. But this show also makes it seem that love is only for the rich, young, svelte and successful! You and I both know that's not tru.

At this point, I'd say that roberto or chris or (the midwestern guy) they are all great catches. In real life one could just go ahead and keep dating their 2 or 3 faves til the figure out which one they want. or they could choose a polygamous life. Why does this show force you to rush the process and pick just one.

But it does. And on that note, I think I'd pick the guy whose family i fit in best with, and that would be Chris. because roberto's dad is very conservative. I felt Ali handled the questioning from roberto's dad with exceptional grace and wisdom. Remember he asked if she will be devoted to him and his career. dad was worried that ali will get too much into her own career.

And the dude whose dad has dead animals in the basement. I don't think that's the best fit. But the dude who is from new england like her. amazing man with a wonderful family where ali would fit right in. I hope she chooses him. You and I both know that any of these dudes would marry ali in a heartbeat.

I didn't think ali handled the bad news from frank very well. I give frank credit for not living a lie, for not living a sham, but being willing to closely examine hisself and his intentions prior to engaging ali. Good job frank. I mean these are very young people. I thought Chris (monitor) was too hard on frank when he disclosed what was going on back in chicago.

folks what do you think?

Road rage, roadkill and related rantings

I must travel 7 miles of rural roadway before I meet up with falls road. On the way today, I saw something I've never seen before. Pet cat as roadkill. I wondred if i should call the cleanup people.

On the way home which was at dusk, 2 people began flashing their blinding lights at me for me doing 43 in a 45 zone. As per usual I came to a dead stop for each instance of road rage. These people have 4 opportunities to legally pass me when there are the dotted lines, yet they chose not to. The first time I came to the dead stop i sat there for 5 minutes.

Apparently they got the message and backed off. Altogether about 4 did pass me at about 80 mph. One of those vehicles must have hit a raccoon, which wasn't quite dead but was squirming in the middle of the street. Revolting and angering that most humans seems not to respect human or wildlife or they'd stay in the speed limit.

Yes, I have indeed blogged on this before, and it's one of the few times any of you have bothered to comment. Sure does stir folks up, this topic. Cuz i have no doubt that the majority of my readers do at least 15 to 20, AT LEAST 15 to 20 over the speed limit on rural roads. and that you are in a 4x frickin 4 dodge double wide ram with monster tires.................

I thought Manhattan would be a break from the road rage, but not really. the cabbies honk and rage even tho' there is a law against honking. 350 dollar fine if you honk. unenforeced law...............

"There's something transformative about that place!"

7/11/10

It's that time of year again folks. That time of year where I talk about that magical place! The place is the carroll county farm museum. The event is the roots festival. www.commongroundonthehill.org

I'll weave fibro themes in with this piece about the event because the fm and other coexisting conditions are with me no matter where I go. The fatigue of fibromyalgia is absolutely profound. All I could do on Thursday was run a couple of errands at Wal Mart and then I just had to submit to the fm (fibromyalgia) and get back in bed for the rest of the day. The pain is profound, deeper then you can imagine. It's nerve pain, muscle pain that i feel in my entire body, down to the core. It's all I can do to just get out of bed, bathe and get dressed. This is a very real disability.

Should I go to the roots fest today? I can barely put one foot in front of the other. I look up at the sky and it's threatening rain but the cool air is a welcome respite to the 100 degree temps!

So I dragged my ass over to the farm museum like I've done most years since 97 (if i have wheels and I'm in MD) when I discovered common ground on the hill.

I'm so glad I went today. There's a peace that comes over me when I'm on this land. And the music is so beautiful. There are 4 music stages with back to back concerts. The headline performance is tonight at 7 p.m. A woman named Kathy Mattea. Her name rings a bell but I can't tell you a thing about her. She did make front page of the newspaper today for winning a bunch of grammys. The paper says she's a country music performer. Or at least that's the genre she's been assigned.

I'm finishing off the healthiest dinner of my life, fried dough, over on the picnic bench. I'm chatting with one of the vendors who crafts beautiful things out of metal. I told him I don't know who this Mattea person is but I'm going to mosey on over there anyway. Her band is starting the sound check.

The moment she starts singing I recognize her voice from the radio. I'm in love. She does a song called "18 wheels and a dozen roses" and another one that goes "dance a little closer to me" She's backed up by about 4 or 5 other instrumentalists I'm not sure. I can't see her clearly I'm way in the back. I'm guessings there are 250 plus in attendance. The birds are singing, (literally) the lucusts are singing, the sun is setting over Carroll Hospital. Two little girls of about 5 yrs. old are catchiing fireflies in their cupped hands and yelling "I caught one!"

What is it about this place that melts my troubles away for the day? Mattea occasionally asks us to sing along. I don't know the words but I attempt to harmonize with her. At the end of the concert everybody stands for an ovation. During the ovation a woman taps me on the shoulder and says " YOU HAVE A BEEUUUUTIFUL VOICE!"

I think I just had my own "grammy moment!"

Day 4 "house arrest"

Feels  like house arrest. Car in shop. Cant reach mechanic because his phone lines are down.  Or, did they take the phone off of the hook so they can get caught up on repairs they didn't get to do over holiday weekend? (i wonder)

My conundrum is, if I walk  N.W. route to the mechanic,  there is a good chance I'll get run over.  take the S,North route? there are some sidewalks. I'd have a larger distance to cover but it'd be slightly safer. Call a cab and have them take me to shop? Cab might not be willing to take a person just one mile. See, the carlessness adds such a grueling tone to one's day as you know from my blog posts that I wrote when I was carless.

Walk to cafe then hitch to shop? I never made it past the cafe. Couldn't work up courage to hitch up here. Did a little down in the city but up here ,well folks look at u like u have 3 heads if u ask for a ride as everyone up here has a vehicle, or so it seems. Even when i see folks walking there almost always 15 to 20 and male. Even that short distance that I completed felt miraculous because it literally took me 13 months to work up the courage to walk these country roads alongside vehicles, 4x4 hummers doing 80 mph and talking on cell phones.

It's 100 degrees and I see no humans actually outside. A mail truck drove by, and the ambo is passing me now. Ironically the ambo stops at the house I'm just a few steps from. I wave, for it is the same ambo crew that came to my house to get me yestrday.

The cafe i went to , well their a/c is down. By the time I completed my journey to the cafe I was lightheaded and having a hard time breathing. It hit me that even tho' I had not seen a weather forecast these are the sorts of conditions where they tell healthy and unhealthy alike to "stay indoors"

So, I spent a record 5 hours in the coffee shop finishing off a 700 page memoir that was a surprisingly easy read. Very compelling. "Stolen Innocence" Ironically, I had to pass the mormon church to get to the cafe and to get back home. Even on the walk home I see not one mortal outside. Not a single skateboarder at the skateboard park.

Nothing was resolved in the e.r. really. Blood work came back normal cept blood sugar being low. They thought it's because I've been skipping meals perhaps.

( A little sad I"m missing arts camp.)

But better schedule that mri as soon as I get car back. Im eager for answers. I have been researching brain tumor symptoms on internet, and fluid on brain symptoms on internet. I am determined to find somebody to help me do the living will paperwork. For, after my research I see that if I did have to go thru that sort of operation I might never be the same again in terms of memory, vision hearing, walking you name it...................

Considered renting a car today, but if they don't pick me up, it'll be a 25 dollar cab fare just to get to the rental car place. Or I could just take cabs from place to place to place. In the long run, say I were to make just 3 locals stops in a day via cab. At 10 bucks for each fare, I'd likely be laying out more money then with a rental car. And you have to sit outside for ong periods waiting for the cab. Internet confirms that there are cab companies even tho' I've never seen a cab out here.

But one mile is my absolute limit for concrete walking in this heat. It's killing my ankles and feet. No doubt it wouldn't be quite as hard if I had not gained all my weight back...................

Signing off for now

call ambulance on a holiday? a nightmare

I'm waiting for the on call doc to call me back. I want to sleep so bad. But the tardive dyskinesia is severe and i'm having left side seizures, legs jerking and sometimes full body seizures. chest pain and a headache that wont go away along with all sorts of unwanted muscle movments. All of my experiences with hospitals have been dreadful, so if this won't kill me i don't want to go to hospital. Add that to the irony that it is across the street from the camp I had hoped to attend tomorrow the 5th, but can't.

I'd have to go by ambo. because car is broken down. But if this won't kill me I prefer to avoid the hospital. When i was in hosp. in March I never fell asleep the whole 5 days because of the a/c cold and the noise.

Statistically Monday's are the busiest time for American emergency rooms. Couple that with the fireworks injuries, that is NOT where I want to be. Many of you say "i'll pray 4 you" i never know how to respond to that it's awkward. So, if you wanna pray, fine, can't hurt, but don't tell me you're praying!

mri is in 2 weeks but i may bump it up earlier. I do not have epilepsy..............

"Initially I wasn't alarmed"

But I read the order sheet some 3x. What?! Indeed I am being sent for an mri because of my blurred vision, trouble with balance, weakness, migraines and sometimes seizures. But what was written on the order really hit me today.

It was worded in such a way as to not alarm the patient. BUT! It said" we are sending you for this test to "rule out" a brain tumor, fluid on the brain, and mini strokes"

Brain cancer is most certainly not the way I'd want to go! My test is in 2 weeks. My tardive dyskinesia is very bad and embarassing. I'd like to go to arts/music camp, but the t.d. as well as the fact that I've pretty much lost my normal speaking and singing voice would prohibit my desire to sing at the festival.

The situation here at home would prevent me from taking any class which requires me to purchase materials. Classes (up to 2 weeks long) would serve as a temporary distraction which might be nice.

For now, my doc. is keeping me out of surgery (for one of the other issues I didn't mention in this post) and is trying me on two new meds for about a week.

fun, fun, fun

I'm reading "Stolen Innocence" a phenomenal biography of a woman who grew up in the church of latter day saints (the one that allows polygamy and encourages it.) She was forced to marry at 14 years old. It's a most wonderful book but it's over 600 pages long!

author's name is Elyssa Wall

"The Latest with Megabus"

I made another dreaded call to the 1800#. I said i need to speak to a manager or a supervisor. He said can't you just tell me? I can but based on my past experiences you aren't going to be able to help me.

I told him about the summons. He said he'd get his supe. I talked to the supe. and he said he can't help me either. They told me to email the megabus website. I told them I've sent 4 letters of inquiry that way over the last 3 weeks and received no response.

The referred me to the Northeast branch of megabus. But they said the office closed I'll have to call back tomorrow. So, I did and I immediately asked for a manager. The manager said that "You chose to double park. There is nothing I can do to help you." I asked for his sup. He said he's the highest up. So I called him a mother fucking bastard then told him that I was going to spend the rest of the day flooding his phone lines.

Then I hung up on him. I called the phone # on the back of my summons. She can't help me she referred me to voice mail. I left a message on v.m. stating that megabus is giving me 15 days (undated summons) to set up a court date. I said I am in no shape to go to court and this is the responsibility of mega bus to resolve the issue.

I then called the Better Business Burea. They don't take phone complaints. I attempted to file the complaint with their website which was frozen.

I joined Angie's list (.com) and filed my complaint with them. At the very least I can give megabus a bad rap. I read other megabus reviews on line. One woman's bus caught fire. She said she has alot of proof that m.bus is not maintaining their buses....................

"Manhattan vs. Baltimore"

As you know I just went to Manhattan for the first time since I was 7. (1970) I don't remember the 1970 trip but I know I was there as I recall getting a souvenir of the empire state bldg.

 Overall I like NYC alot. Here's my compare/contrast lists for Baltimore vs. manhattan

Similarities between the 2 cities:

bad pollution, exhaust fumes
lots of concrete
cold people, pretty rude
good arts and culture scene
poor services for the disabled/handicapped.  There wasn't even an elevator in Port Authority!

 I asked 2 employees for the whereabouts of an elevator and they both pointed me to the escalator!  No one seems to know the difference between an elevator and an escalator!  All the stair climbing did a real # on my knees. I really struggled with steps since I'm not used to them.  Walking steps reminded me that I do indeed have osteoarthritis of the knees, which is a diagnosis I tend to forget about.


Ways that the cities differ:

Manhattan has amazing ethnic diversity. I actually had a tough time finding folks in Manhattan or in Jersey who spoke English and I rarely heard a traditional New York accent.

in New York and in New Jersey,  I heard more Spanish then English

In Manhattan I felt safe even after dark

Manhattan is shockingly expensive with restaurant food marked up 3 to 4 x what it might sell for in Baltimore. Manhattan. hotels were about 4x higher then Baltimore hotels.  (I did not pay for this trip out of my own disablility check, it would have been impossible)

Manhattan streets don't hold the angry vibe that Baltimore street do. Yes, there were rude people but there was no noticeable racism.

There were alot of slender / fit people in Manhattan. Of course people are there from all over the world and America is the fattest of countries.

I picked up a liberal independent newspaper for free and read of the same lack of affordable housing there as here. They face the same federal gov't housing shortage as most u.s. cities do.

The last day and a half,  I was on my own in Manhattan. I didn't feel as stigmatized eating alone in restaurants as I do in Baltimore  because singles actually do dine alone and go around alone in Manhattan. Where as in Balto. and Carroll County I rarely see anybody dine alone even in Mc Donalds and Wendy's!

My first day in Manhattan I thought, I could really love this place! (until October when it gets cold)  But by day 3 I felt overwhelmed by the noise and lack of green. There's still so much more I need to see. So much more. But first I have to get this summons thing worked out with Mega bus.....................

I didn't find any residential housing  in Manhattan, although I surmise that it does indeed exist.

Manhattan is taking huge precautions against terrorism. But I wonder if they really feel in control. I mean this guy who tried to detonate the bomb, came so close to succeeding. And it's not like they check our bags at the train and such. I really don't know how they can really have  control of the issue, yet there were police doing drills everywhere. That was different.

"Her Virtual Reality"

You've read my older posts about telephone chatlines. The ones I told you of work like this. 30 men call in 50 women call in. You scroll thru the ads and if you hear somebody you want to talk to you do one of 2 things. You either press 2 and send them a brief recorded message, or you press one for "live connect" where you talk in real time.

But some of the oddest chatlines work like this. One is called "Hotel California" You enter different "rooms" each room (like room 1) had one or two people who greet you in a prerecorded message. These tend to be folks with zero formal education and strong accents and rural drawls. So, a greeting for room 15 might say this "Hey, this is Psycho bitch and welcome to room 15. Here's the rules
I don't take no shit off of nobody so if you're gonna come in here and talk shit your ass is either gonna get booted or blocked. I don't put up with no drama"

So, if you like what you hear on the outside greeting you can enter a room. In these chatlines there are plenty of folks who are married but who have never met. People who have their marital ceremonies conducted over the phone. Talk for years but have never met. One woman "Playboy 4 u" is getting ready to move from Las Vegas to Nowhere Utah to be with her mr. right. She told me that all that is needed is "a will to make a relationship work" It is my udnerstanding that she has never met this guy. Onece you enter a room you're on a party line so to speak. The folks some of the "married" ones or "best"friends watch t.v. together. Both parties turn on channel 2 then discuss the show that's on. Some couoples prepare the same dinner and eat at the same time even tho they are in different states!

I don't know about u folks, but don't these relationships sounds a bit empty?