Bidding Shadow and Resistance

I. The Bidding

It is time again

wail your way if you must

step, step back

to that dreaded side

Familiar and feared

Tainted like a Halloween moon

with unanswered echoes - 

and flashes from your past

that you dare not utter

Whispering passes your ear

in disguised tones

Follow Me

to that trunk of tattered and musty remnants -

They delight in throwing apparitions

Into your sweating dreams.

II. The Resistance

I command you to release me

from my mind's eye

All fragments of you

For you are only my Shadow

You serve a purpose

But I will not feed you

I will resist, bathing in the release

From the prison of your pelt

and the jail of your Judgment

I sundance in this second's solace

Like a sparked engine revving

My mind races away

to a beautiful, distant nothingness

Glipse after glipse,

a labyrinth of

Captured colors and popping bubbles

appear at the touch of this moment

I am nothing but this moment

Which is Everything and Bliss

I am a curled chrysalis~

When radiant wings emerge

Will dry like powerful new arms

Remembering trickling dimensions

like a magnet, I am

Pulled back to my Freedom

City Dove

City Dove

The mauve pigeon roosts

like a discerning sibyl of the city

below her bridge

veiling her dove eyes,

suppressing

her mauveness.

Silent Sea

Silent Sea

Coastal crevices of beach boulders

whisper of unearthed ages

through my touch.

Drawn to the beach for clarity

to the wise Lady of the Sea,

my restoring solace.

The pines sway and creak

Over the cold steam. Seagulls

glide the wind's surface and wail.

Upon the convening of sand and splash,

morning mist mutes the Ocean's hiss.

Silenced with the

tyrannical tirade

repressed by

thunderous surf

Her white caps crash ashore with

the tempest's sonorous pursuit.

Cloudy chaos

humbles and soaks

my accumulated hopes

like paper in rain -

fruitless journeys

remain cruelly purposeless.

Searching for the cause

of a futile epoch -

scarred stones and

false relics

hold unclear history,

a useless past

when hiding deep in the murk.

A final calling upon the Sea -

an unclear exchange with

her muffled reply.

A destroyed masterpiece -

paint pigments on canvas

running in the rain.

You are my deterred dream.

Looking in vain for clarity

the Sea remains silent to me.

Real Life Angels and Demons

My trip to Seattle was hellish, and that is an understatement. It has taken me days to try to recount this. To want to relive this, to get it "out." Do you know the kind of person you think you know and when you spend and entire week with them and they take off their mask, you actually see who they are? Yeah, that was my week. Try sheer ignorance marked with the importance of thinking she knows everything, and I mean everything. There are no real sins in this world but ignorance.

First of all, the trip there was exhausting in itself, I was already using a cane when I arrived, as it was 4am Thursday for me (Aug 28th) and I had left 8:45am on Wednesday the day before. When I got to this girl, E's house, who I'd worked with for over a year and hung out with in many other situations, it was a disaster area. My mouth dropped. It smelled like dank dog smell. Wherever I turned there were mounds of clutter on every surface. I tried to excuse this with the whole "wedding craziness" coming up for them in a few days. I was exhausted and just wanted to go to sleep. In hindsight, I should have checked into a local motel!

In an e-mail I wrote her on July 17th I wrote some concerns to her, because she had been nice enough to invite me out and pay for my ticket (round trip) to come out. I was a bit anxious, as I wanted to let her know how bad my symptoms could get and if was she "up" for it:

I guess there are a few things I feel I need to let you know before I come." I wrote, "I sometimes need to walk with a cane. I am going to acupuncture right now, and after the treatments, I can walk without a cane for a day or two, but then the weakness and leg trembling come back. This makes me pretty limited... Which frustrates me. I also get out of breath very quickly, like, light-headed kind of out of breath, where my legs will give out if I'm walking uphill and breathing heavy. At times I need help, like serious muscle help walking. It's a little scary, E.

I wanted to tell you this before I came, so you would know what to expect and wouldn't freak. It threw my step-brother for a loop last weekend. He knew what I was going through but hadn't seen it for himself. When he actually had to help me walk, watching my legs shake and almost give out, he had a reality check.

I also get pretty tired easily, especially after activity. I am a little anxious about how my symptoms will be at the wedding and reception, because I'd like to dance with everyone, and not just sit in a chair and just shake my upper body to the music! heehee

Every day is different from the next, and it's hard to know how I'll be on your big day. I just don't want to be any kind of burden to anyone... that's what it pretty much boils down to.

I also wanted to tell you too that I have 2 surgeries coming up... Yeahhh. They found a growth in my uterus which needs to come out August 13th and they are also doing a biopsy on my underarms, as they are very swollen again. There may be a connection between the growth and the underarm swelling if the uterine growth is cancerous. Hopefully, and most likely, it is not.

I am hoping the underarm surgery is sooner than later, so I will have enough healing time before I come out.

Tina


In a July 18th e-mail from her, she wrote:

I don't want you to worry about it. I don't want you to worry about anything. I will have a wheelchair here for you for any of the day trips we take because we have a couple of them and C (her husband) can help you get around. He's a great guy like that. I am looking forward to seeing you in any condition you're in.

Let me know if you would like to visit an acupuncturist or naturopath while you're out here and I'll make all of the appropriate arrangements. You just tell me what you need and I'll make sure you have access to it. We'll clear out a space in a cabinet for your meds and you'll have someplace comfortable to rest.

You just get your sexy butt out here and party like a rock star, even if it is from the waist up. ;)

Love you, girly and I can't wait to see you too. I am very excited! I've missed you!

E


Well, after that, my anxiety was put to rest. I decided, I would come out. After several treatments of acupuncture, I was walking again, and I let her know this, but I also let her know that if I got too tired, I might need a walker. She said that would be no problem.

So, I guess I should have asked about the definition of what a comfortable bed is... It was the bottom bunk bed in bedroom shared by 3 other people. It was extremely uncomfortable being concave and there were no sheets on it. There was a comforter on the bottom and one on the top, and honestly, I do not think they or the pillow were washed before I came.

The room also had a mattress on the floor for her best friend, also with no sheets or comforter at all on it, but it appeared this woman didn't mind this at all. The room was for the three daughters, ages 8, 15 and 17, and there were piles of clothes scattered on the floor, which were very difficult for me to walk around with a cane or a walker (there were none on the premises, as she had promised). In the bathroom, clumps of black hair were strewn all over the place. I would have imagined that if you invite people to come all the way across the country for your wedding you would at least pick up a bit.

After a crappy night sleep, the next morning, I learned that her parents also lived there. That meant that she asked 2 people to join the already 7 people who lived in a cramped 3 bedroom apartment, with one large and one small dog. On top of it, the 2 dogs there were losing their fur due tot the fact that they were so ridden with fleas. In fact, the large black lab had an infection in her tail, with dried pus on it. She stunk so bad - and I felt so horrible for her. I was also getting bitten by fleas as I sat on the couches, in the bed I slept in, and anywhere else in the tiny apartment.

In her minivan, there was dried vomit on the back of the passenger side. Her youngest gets carsick, I guess, and this seemed to have happened "a while ago." Her excuse was she had no extra money to detail it.

As I watched the interaction with her and the family, I realized how verbally abusive she was towards pretty much everyone, having a short temper and a loud yell for the smallest things. She tore open a present one evening, left the paper on the floor (where all the other trash was) - and when her 8 year old walked over it, she demonically yelled, "Throw it away!" I was flabbergasted by the different personality I had seen for the past year working and socializing with her. Why should her daughter throw something away that was her mother's trash to begin with?

Her kids would cower and so would the dogs. She would even yell at the dogs when they would incessantly itch and lick themselves. Finally, I spoke up and said, "Well, they are infested with fleas, so that's what happens." This was after I had had enough, and had bent over backwards after her totally disorganized wedding, and rushing around doing things that should have been done weeks if not months before, like last minute decorations. I was one of the big "helpers" for this launch, which she ended up complaining about. By this time, I wanted to shove them in her loud, huge mouth.

I had even waxed peoples' eyebrows, did peoples' nails....

When I had to ASK her maid of honor  to HELP ME and her reply was, "in a minute," because she was too busy texting guys back home in Missouri....

And I wasn't even in the wedding party, and I don't even know why I was helping put the fruit plate together, putting the cheese plate together, blah blah blah. I don't know why now.

Even her parents thought I was "heaven sent" that day, as I fixed a lot of the mistakes that were made by the freaking TEENAGERS (her daughter's friends) she sent to set up. She hardly thanked me.

I was surprised to see that over half the people that had RSVP'd did not show. Apparently these were people from her work on the West Coast. Wow. I was also surprised to see that they got about 5 presents from the people that did come. I was not being judgmental, I was putting the pieces together in observation.

Overcome by exhaustion from the past week and then that day, I was using a cane my the end of the night and as she walked 50 feet in front of me, she screamed for her husband to come and help me, because apparently, my legs were giving out and I didn't know it. Her husband had to carry me inside.

The next day I was completely exhausted and in pain, I mean 8 or 9 on a scale from 1-10. I don't really talk much when I'm in that much pain, and a fuss was made as if I was "mad" or something. At this point, I was not comfortable anywhere and I was itching so much. I had flea bites on me and I felt disgusting. And I knew at this point I was having a flare.

I tried to have a nap, but that didn't work. The eldest daughter came in once, her boyfriend then came in three times in 10 minutes, then her best friend came in three times then her husband came in for the vacuum.

Lord knows we don't want to stop ANYONE from cleaning, but why oh, WHY do you store a vacuum in your kids' bedroom? So that was my nap. My only solace was to go outside to a fountain with ducks at the apartment complex and meditate and/or call some friends back home. I thought of coming home early, but I didn't know if I could afford the change in the ticket. I thought about getting a hotel room, but a cab into actual Seattle (yes, I found out I was actually an hour away) would have been about $100. With being on disability, I just had no extra cash, and I really didn't in my wildest dreams think I would be having such a terrible time. I felt completely stuck.

So Monday she tried to pawn me off on her mother and tell me that she was spending the day with her in-laws and it might be too much for me to walk. I still hadn't even SEEN Seattle. Her mother was supposed to take me - but then I learned her mom was afraid to drive in the city. I don't know why, but I chose to go with the family and in-laws. I just couldn't stand being in that apartment any longer. But I should have taken the chance to have some time and changed my ticket home, because the next day I was still in excruciating pain. My back and legs ached and my lymph areas were becoming extremely inflamed again, just like they were last February. My neck, underarms, elbows inner knees and groin, hurt to touch and were totally inflamed. Interestingly, the more pain I seemed to be in, the more this "friend" seemed to IGNORE me. What a far cry from what she had painted a picture of previously.

But seriously, it was awful in that apartment. When I showered, I would take the towels (which were not really even clean, but covered in black hair) and put them down over the counter and the bottom of the shower. I would also put them on the floor. Everything was covered in hair, grime and nastiness. I actually did clean the bathroom surfaces a couple of times while I was there just so I could use them.

Also, I was never asked if I ate, or if I was hungry. If we actually left that squalor, I would ask if we could stop somewhere so I could eat. The water from the tap tasted like bleach, so I became pretty dehydrated. The only thing I ate was eggs and usually I had to wash the pan before I could make anything.

Tuesday, Sept 2. I had had it, she had been rude to me all week and I was at the end of my rope. I don't know why she brought me out to be there, unless it was to treat me like the rest of her family, which was like shit.

I had kept asking, when would I see Seattle, as she had said previously she was going to take me "here and there". All of a sudden she had to bring her 15 year-old to swim tryouts and her 8 year-old to a welcome back to school BBQ and said, "Sorry, Tina. You'll have to come back to see Seattle." Like I was EVER coming back to see her. Maybe Seattle, but not her.

I just sat there and laughed. After all I had put up with, and the whole trip here for a week, all I've seen was a whole bunch of toxicity and an apartment full of squalor.

I said, "Jesus, I've been here for a week, and I didn't even see Seattle?"

So the mother and daughter bicker about who is going to take me. I say, "Well, I don't want to be a burden to anyone."

I get up and limp away, totally disgusted and just wanting to go home at this point.

So E says she'll take me. I figure I'll put up with her for a few hours, knowing I can get out of that nasty apartment, knowing I'll see something nice and just keep thinking I'll go home the next day.

So when she's ready (she hadn't even taken a shower in DAYS, not even for her wedding, saying she had dry skin). She walked 50 feet in front of me, didn't even wait, as I slowly walked with my cane. I was shaking my head at the disrespect and the downright rudeness going on. This was not the person I thought she was, and when I got back home, she was not going to be in my life anymore. What a horror of a person.

She slammed the car door, bitched about how she needed gas, scared me as she swerved into a gas station, and when she saw all of the pumps were full and immaturely muscled the car into a spot. Slammed the door again on the way out and again on the way in.

Finally, I said, "Ok, E, what is up??"

She said that nothing was up. She didn't want to take the whole mess of a week out on me. I told her she was already doing so and that damn it, she had been verbally abusive to just about everyone including myself and I did not come all the way out here to be treated like this. She apologized.

It didn't mean anything to me, but I did not say this.

So she said, ok, let me know how you really feel. I said, ok, you have been a complete bitch to me the entire week. I went on to say that she had bitten my head off numerous times about small things that I in no way deserved. She interrupted me and said I was an opinionated, hypocritical bitch.

Now, I had been listening to this person get off on her racist jokes, mostly about Mexicans and "Hispanics" and her daughters are half Mexican. I was shocked to see this, especially because her father watched his own father being shot by Nazis in Hungary.

The hypocritical behavior was astounding and to top it off, she was calling me that name. Her stories about doing mean-spirited things and actions to people, her anger-management issues, her projecting her terrible faults onto others so she wouldn't have to look at them herself. Her husband even called her egotistical and hypocritical. This was before he made a motion to pretend to strangle her. This was the DAY after they got married. Yeah, that's love.

While speeding along, she continued telling me that I insulted her and her family by voicing my opinion. This "thing" has a louder mouth than Jabba the Hut, and I couldn't believe what I was hearing. All week I was biting my tongue, and yes, made a comment or two about the fact that the dogs had fleas and do they know about Advantix or Frontline? This was when I got my head chewed off. I also opened my mouth when this ignorant thing, who thinks it knows everything, was trying to tell her daughter how to write notes in class before school started.

As a teacher, I know she is not just a "kinetic" learner as her mother would like to think. But has learning disabilities, and ADHD, most likely from the chaotic and toxic upbringing she is exposed to. When telling her daughter to write "important notes" down, the daughter replied innocently that she does not know what is "important", and that is the problem. Of course, control freak wasn't listening, and that's what I gently tried to tell her that that is the biggest problem: that kids that have problems taking notes don't know what is "important".

Well, she took that as opinionated and that I didn't know what I was talking about because it was HER child.

I guess I don't know what I'm talking about either when the eldest, clearly sexually inappropriate daughter almost falls with a dress on, legs wide open, and asks me in front of everyone if I saw "anything." I answer a disgusted "no" and she disrepectfully asks, "You wanna see it again?" upon which I also reply a disgusted "no." There was no correction there from her family. Surprised?

This mother has posted on her myspace, a totally inappropriate almost soft-porn photo of this same 17 year-old daughter, with a caption underneath that says something like, "Good thing I trust this girl." She shows me and my response is not fake, it is: "I'm surprised you posted that."

At the wedding, this same daughter is obnoxious, embarrassing her parents during the toast. Outside, she is bragging in front of 20 something men that she and this other 17 year-old girl are "the best in bed." Although she has a boyfriend, she is clearly showing off, and clearly out of control. She plows into a guy she has a crush on, and by the look on his face, obviously annoys him instantly. She starts picking on her younger 15 year-old sister, telling her to "go away" in front of everyone there.

The teacher in me cannot repress any longer. I tell her to knock off the behavior, to stop being so mean to her sister and to stop showing off. This is when she brags about being the best in bed. I say, excuse me? The best? HOW OLD ARE YOU? SEVENTEEN? Do you know all the women in the world? Do you know when a women's peak is? Do you know how old I am? Best in bed? I don't think so. I excused myself. The rest of the guys in the group agreed with me as I walked away.

I later told her parents who agreed her behavior was atrocious and they would talk to her.

Back to the car ride...

This is when the tables turned so strangely and I was accused of VERBALLY ABUSING her children, insulting her family, being hypocritical and SELFISH (for wanting to see Seattle).

Selfish? I waxed her eyebrows, did her maid of honor's and daughter's nails, did decorations that should have been done MONTHS before AND set them up - I did TOO much and my body was PAYING! And I never was thanked - But no, all I wanted was to see Seattle. Yeah, that's selfish...

She began to SCREAM at me. I screamed back. All of my anger at being treated like dirt came out. She kept accusing me of interrupting her, of trying to CONTROL her (huh?) - that I had INSISTED on coming out (double huh??!!).

I told her that all these things she was saying about me were all the things about herself that were true. The rest made absolutely no sense.

I said I NEVER insisted on coming out, I said REREAD the e-mail I sent her back in July. She never even HAD a wheelchair, not even a walker. She said if I was so disabled I should have not insisted on coming out. That she PAID for my ticket and that is the GRATITUDE she gets?

I SCREAMED, "RIGHT, I did NOT come out all the way across this country to be in SQUALOR and your TOXIC energy for a goddamn week and to be treated with disrespect." She denied that she treated me like this, of course.  And when I said, "Why it was that when I have called 3 friends they all could not believe how poorly I have been treated?"

She said, "Because you LIE and that is all you do!" And so I most likely lied about what I was experiencing here, apparently. She said I lie about my illness and that I was walking before I came out (which I was - the severe exhaustion and fatigue was causing my body to flare).

I said that she had some serious issues. Of course, she threw it all at me, like a high schooler who doesn't know how to have an adult discussion. All I asked was what is up, E. I wanted to talk, and she unleashed all her many, many demons.

I told her to take me BACK to her apartment, NOW, so I could get my luggage and so I could go to the airport. She REFUSED.

She SCREAMED that I needed to calm down before HER CHILDREN were going to be around me. I said she was the one that needed to be calm and that I wasn't interested in talking with anyone. I wanted to just go home, I said I didn't want to spend another MINUTE with her. I would rather sleep in the airport.

I had NO idea where she was going, she was driving all around. Then CLICK, all of a sudden, she clicked into another personality, and she said, "Tina, are you thirsty? I'm thirsty. Do you want to stop and get something to drink and talk? I would hate to lose your friendship the way that I lost B's." (B, a mutual friend went to visit her and now is not speaking to her - I now know why).

I broke down and said that I didn't think I could ever be her friend again because of the way she was being and treating me and that I didn't think I knew her, that I EVER knew her.

Then something clicked again, and she said, "I don't think I know you."

"Hell," I said, "I am me. And I don't ever lie."

Then the driving continued. I was a stranger on this highway, I had no idea where I was. I told her if she didn't bring me back to her place NOW, I would call the police.

One of her last comments to me was, "You're not disabled, you lie, you just want peoples' attention and pity."

My mouth dropped. I muttered, "You goddamn bitch. Let me out of this car now, before I belt you in the face." And my step-dad, who was in the Navy, had taught me how to throw a good right hook. I was ready to use it if necessary, but I would have rather gotten myself out of the situation.

We were going 80 mph on the 405. She slowed down on the left shoulder. "Right here?" she snickered.

"Yes," I said, relieved that I would be able to get away from this terrible excuse for a human being.

This demonic smile overcame her face as she drove away. She thought it was funny, abandoning a limping woman with a cane on the left shoulder of a highway. The woman's legs were giving out from the shock of what just happened. Where she was, she had no idea. That woman could have been killed by a car, abducted and/or raped. That woman could have been murdered. That woman was me. I had never had anything like this happen to me before in my life. And I had never known anyone this had happened to.

I broke down, balling and sobbing, and then my brain snapped on, and I called 911.

I was there on the cold, windy highway for over 90 minutes. I didn't know where I was, and she happened to drop me off where there were no signs. I limped with my cane to find them, but by that time the State Police had traced my cell.

Thank God for cell phones. Thank God for Police.

The Statie didn't know what to make of me, my eyes were so red and swollen. I'm sure he thought I was on meth or something. He checked my bag, and I noticed the strap was broken at this point. I was shivering from the cold and shock.

He made me ride in the back, the stereo blaring and hurting my ears. But I didn't care. I was safe. That was the longest 90 minutes.

He drove me to the local police, where they helped me figure out where E lived so I could retrieve my luggage. Thank God she left it outside the door. Thank God no one was home. I could handle no more drama.

I told the policeman the story. He was so sweet. He let me check everything inside the bags to make sure everything was intact. He then took both bags to the cruiser, as my legs were shaking at this point, about to collapse. He traced her mother's license plate and I told him about the kids and the poor dogs. I told him he should get the local ASPCA as well as DSS involved. I told him that that woman had to be severely mentally ill. He said with the lack of hygiene in the place, most often times mental illness is shown in the squalor people chose to live in. He was floored when I told him 7 people lived in the tiny apartment, including a small child and that the dogs and the place were infested with fleas.

When I got back to the police station, I was still shaking and tears were still flowing. They gave me water and I was so dehydrated I drank the whole thing. The lady behind the counter made an arrangement with what was left in my credit card to have a shuttle come to bring me to the airport. I asked if I could press charges, but apparently there are no laws in Washington State against highway abandonment. What a damn shame.

The people at the police station were angels. I had talked to my parents about 12 times at this point, and I'm sure they felt powerless. But the shuttle came within 20 minutes and I was getting the hell out of there at last.

An hour later, I was at the airport, and not walking whatsoever. I needed a wheelchair. I was a mess, my eyes were so red. I'm sure I looked like I had been through hell, because I had. I kept telling myself it was over. All I had to do was make it home.

I soon realized that insane human being tried to cancel my ticket home. But because I was sitting in a wheelchair in front of airline agents, knowing that the same person had abandoned me on a highway a few hours before, the airline agents quickly reinstated the ticket. I was on standby for the 11pm flight home.

More angels. I just prayed and prayed.

So I sat and prayed for hours. I learned I was the 2nd standby for that flight 11pm. Didn't look good. But I continued in my total exhaustion and excruciating pain to pray and meditate. I know I must have looked dreadful, as people were looking at me and I could barely walk at all. My legs were twitching involuntarily, all over the place. On my face must have read pain. I didn't care, I was in my own world. I had enough left on my credit card to eat dinner and get some juice and water, and enough to get something to eat breakfast the next morning in my connection in Newark.

God, thank you for credit cards... food and water. Thank you for wheelchairs... airports. Thank you for airplanes...

At 10:30pm, 30 minutes before take-off, I sat in the lobby and I went into a trance. I would find out soon if I would make the flight or sleep in the airport until the next flight to Newark at 8am.

Something kept telling me I would make the flight. I thought it was against all odds. I meditated and saw this white light in my third eye. Angels, millions of them, popped out and separated into their own separate lights, surrounding me. I felt, for the first time in days, especially now, so safe and secure. Tears welled up. It was so wonderful. I saw the number 2. Not all the standby's would make it on, as there were 3.

I opened my eyes. The airline agent came to me on my left side and handed me my ticket. My mouth dropped and I gasped. I asked, "How many standby's made it on?" She replied, "Two."

Again, my eyes welled and I could not hide my smile. I called my parents, for them it was 2am, and told them I was coming home. They had been praying too and were so relieved.

I sat next to a guy who was from my hometown of Worcester, Massachusetts. I didn't even get his name, but caught him looking at me before we boarded. I knew it was eyes of compassion, and that he knew I was going through a lot.

He made some small talk with me, that he knew people in Portland, ME. He told me he had a wife who was expecting a baby at home. Most of all, I felt protected. My eyes were chafed at the outsides from the tears that day, and my eyeballs burned from the irritation and extreme exhaustion. It wasn't long before the plane took off and I was thanking God for planes again, and angels, and thanking God for God, and for nice guys on planes.

His broad shoulders put off enough heat and when they brushed against mine did not move awkwardly away. His legs did not either, and I was glad, I just needed the warmth of another human being, a gentle person at that moment. And I fell asleep.

As we landed in Newark, the sunrise was salmon, purple, light yellow and pink. I felt it was a welcome home. Thank God for the East Coast. I am an East Coast Girl.

The connection wasn't long and I was dead to the world during my flight to Portland. By this time, at 10:30am, though, this smaller aircraft let their passengers off by a set of stairs to the ground. As for me, I could hardly make it to the bathroom on the aircraft. A team of 8 or 9 people had to put me in a contraption which made me think I might be shot up to the moon. I was strapped in to this padded seat while a ramp came onto the plane. Then I was pushed onto a small forklift (for people) to get onto the ground.

The airline workers were so compassionate and nice, but the fact that my body had declined this much in days was so saddening and angering to me. That I couldn't simply make it down a flight of stairs, that this much shock and trauma had been imposed on me, I was so overwhelmed. I had been up for 25 hours and had barely slept. But I was home. I started to cry. All I said aloud was, "It's good to be home."

One lady just patted me on the shoulder and smiled. They were more angels. Thank God for nice people.

By the time I saw my mom, I was being wheeled by an airline worker. I was itchy with fleas and what I thought could have been lice in my hair. I didn't want her to touch me. Mom checked me in the car. No lice, but flea bite marks all over my body.

On the way home, I told her the whole story. When we got home, I could not stand, and I had to crawl into the house from the yard. I peeled my clothes off and threw them outside. My parents fumigated everything. Dead fleas were found in my clothes and in my suitcase the next day. How heinous.

I hung on to the counters and got into the shower, the first thing, and soaped up 4 times with Irish Spring. Washed my hair 2 times with shampoo you can wash the floor with.


On top of it, this is an e-mail I received from that insane person when I got home:

I'm going to tell you this just once. You post anything negative about my children (...on top of everything else, you verbally abused my children! ) I will sue your sorry ass for libel.

You're a liar, an abuser, a user, and a hypochondriac. I hope you had a miserable trip home!



Oh don't worry, I told her if she harassed me just one more time, I would sue her for abandonment on a highway. Hopefully she's too busy talking to DSS and the ASPCA right now to bother me anymore.

She sent this threatening e-mail after she posted something about me.

Interesting, I am a user? I used her... for what? Fleas? And I am an abuser? Wow, that seems hard to believe. I am also being tested for MS right now by a neurologist... but I guess I really am a hypochondriac.

A good friend of mine commented that she sounds so lucid. Yep, that seems to be her mask. She is a complete psychopath. She has to appear sane to everyone else so people in her life will believe her, as they are the mirrors of her perception, her web of her life.

The Truth is difficult to look at, especially when you do not want to see yourself. There are 2 reactions usually: 1)  the desire to want to improve; and 2) unleashing of all your demons that keep Truth at bay and your perception of lies alive.

I believe I was the target of reaction number 2.

I believe I have fought this person's numerous demons and have lived. I am exhausted and traumatized, but I am alive. I could not write about this until a very dear friend wrote to me today and asked me how my trip was... so I had to respond.

And still, I never got to see Seattle. Maybe someday.... But I will get a hotel room next time.

Am I Bound for that Show Mystery Diagnosis?

After seeing my "second opinion" neurologist, having 3 MRI's including the latest brain MRI as well as a couple of rather painful nerve conduction studies called SSEPs, the neurologist is now sending me down to Brigham and Women's Multiple Sclerosis Center in Boston. He also wants me to keep the appointment that was made a few months ago with a neurologist at Mass General who specializes in ataxia (gait disturbance).

In all, after the exams, tests, etc. this neurologist at PenBay Hosp in Maine is not "sure" whether I have MS or not... no lesions in the brain and that is what he goes by. He is at this point refusing to do a lumbar puncture, or spinal tap, which is when the spinal fluid is extracted and studied.

My neurologist also ordered blood tests for mysthenia gravis, which is another autoimmune disease.

So, I will go to Mass General (AGAIN) and see what those docs think. If they want this guy to do the LP (lumbar puncture) then that will be the final rule-out for MS. The reason this neurologist was being cautious is because there are times when CSF (cerebral spinal fluid) comes back abnormal without being MS. But at the same time, I know two people (one of my  friends and my cousin) whose brain MRIs showed no lesions. My cousin's MS showed in her eyes and my friend's was not found until they did an LP. Multiple sclerosis can be very difficult to diagnose.

If this is not MS, fine. But this is going on a year now, and I know I deserve some answers and treatment. I know I will not have my life back as it was, or course, perceptions and my life as I move forward has been changed forever, and that is good. I just wish for the limbo to end so I may move on.

No One Should Climb A Mountain Alone

The doctors that are treating me for this very obscure illness are still acting like the 3 Stooges as far as I am concerned. I still have inexplicable swelling in my underarms, which are very painful. My primary doc sent me for an ultrasound, which found nothing, no masses, no cysts, but they swell up like peaches every month or so and it hurts so much that I cannot wear a bra and cannot sleep without pushing pillows under my arms. Despite the negative findings on the ultrasound, my doctor sent me to a general surgeon to have him do exploratory surgery and biopsy. That was a 3 hour round trip... and a waste of precious gas.

The surgeon, who looked to be as old as I am, thought that was a "cockamamy" idea, as there was nothing to biopsy, as the ultrasound showed, and he wouldn't know what to look for. He said he wouldn't know what to tell pathology to look for either. When I asked him why he thought my doc sent me to him, he replied that he thought she "was at her wit's end" with me. It was rather discouraging and I found, as I am beginning to find with some docs, rather patronizing, to say the very, very least.

He didn't charge me for the freaking appointment, but I was still not pleased at the whole charades, as well as my primary care doc, who should have called the surgeon beforehand. The surgeon ended up calling her that day and when I spoke with her office, they had come up with this "theory" that this painful swelling that appeared after I was ill was a HORMONAL thing. Upon speaking to my own GYN, she said it would be very unlikely, and quite extreme if it were. Does anyone know what they are doing?

If the doctor thinks it is hormonal, why did she send me to a surgeon? I asked the nurse from her office. If that were the case, then she shouldn't she be referring me to an endocrinologist, not a general surgeon? This has been going on for 8 months now, and one would assume if she thought it were an endocrine issue, I would have been referred (yet again!) to another doc. I think I need a doctor who is proactive not one guessing about what is going on with me, I added.

I should add that I brought to this same doctor's attention that there was a finding of a 8 cm fibriod in my uterus when a CT was done in February. I had to read the report and bring it to her attention, not vice versa. She invalidated it and said fibriods are common and it was "probably nothing."

I then made an appointment with a GYN, who followed through and did an ultrasound. Guess what? They also found what they think is an endometrial polyp that is just under an inch long and needs to come out. I was floored my doctor was so laid back about this. My GYN says most of the time they are benign, but she wants to take it out and biopsy it to make sure. Now that is follow-through. What is happening to the medical field? Or maybe it is my current health issue that is opening my eyes to it all!

I have decided at this point to switch my primary care doctor.

Also, up to this point, I have been told by rheumatologists and a neurologist that I have fibromyalgia, and that is why I am steadily declining in disability. But when I went to find a rheumatologist to treat me in Maine, I found the one who saw me in March and didn't even know what was wrong with me, wouldn't treat me, because "fibromyalgia is not a disease, it is a condition." I soon found out that there are no rheumatologists in Maine who will treat fibromyalgia or chronic fatigue syndrome, they just diagnose it and rule it out from other rheumatological diseases, like RA and lupus, and send you back to your primary care, who usually does not know what to do with your symtoms.

My rheumatologist in Boston's Mass General thought this was "passing the buck" because fibro/CFS is so difficult to treat. The docs here in Maine, in his opinion, are washing their hands of it because they don't want to deal with the myriad of symptoms and the trial and error of meds the patients have to go through before they see results.

If I do have Fibromyalgia and Chronic Fatigue Syndrome, I have to go out of state to someone who knows what they are doing, otherwise, my choice is my primary care doctor, who wanted me to try 2 medications I have already been on for fibromyalgia, which have not worked and have terrible side effects.

So as of last week, I stopped all the meds they threw at me, and I am just going to acupuncture, which has done wonders. I have a lot of faith in alternative medicine and find that in the right conjunction with Western medicine (if it's the right treatment) wonderful results can happen!


I did go to Mass General yesterday to the Director of Pulmonary and Critical Care. I stayed overnight at my brother and sister-in-law's, and my mom traveled with me. When we got into Boston, we walked through the garage to the street, and my left leg had already given out. Thank God there were all these wheelchairs at the other side of the street with MGH crossguards. He took one look at me, rushed over with a chair, and wheeled me all the way in. I couldn't thank him enough, as my mom didn't know whether to cross the street to get the wheelchair while leaving me to possibly collapse, or wait on the other side and hope one of these guys would see us.

So after we made it to the appointment, I had a series of breathing tests, and while doing my second run, got light-headed, disoriented, started seeing spots, felt faint, then lost complete use of my legs. I could not get enough strength from my legs to push myself from the testing booth to the wheelchair. The nurses were helping me, but I was dead weight. Finally I just used all my upper body strength to get into the wheelchair and they wheeled me into another room.

After another fiasco of trying to get onto a bed - with two people helping, and me coming out of my disorientation, I soon realized I had no use of my legs at all. My eyes just welled up and I couldn't believe what was going on. This extreme temporary paralysis had NEVER happened before. When they did some neurological testing, I could not lift either leg up from a laying position. I had no strength pushing my feet up when the doc's hand rested on the top for resistance. I had a hard time putting my finger from my nose to the doc's finger less than a foot away, the movement was very slow, and I could not place where his finger was in space to touch my fingertip with his. It was even worse when he moved it several times.

The worst of it was the ticking and jolting of my legs when I was resting. It was like the nerves were misfiring and my legs had a mind of their own. Spasming and ticking, twitching and contracting, it was like they had mini-seizures. They have been doing this for 2 days now, and now I know when they are about to jump, as there is a small contraction first coming from my low back.

As I write this, my low back is in severe pain from all the contacting. I have taken a muscle relaxer and they have calmed down from jolting from once every 5 seconds to once every 30 seconds. That in itself, not even thinking about the fact that I can't walk at the moment, is the most distressing part of this right now, the constant twitching.

The doc also had me "walk" with one doc on each side of me. I have never had such extreme and disabling symptoms before, but I was glad to at least be in such an excellent hospital while it was happening, getting connected with doctors who would not be just shrugging their shoulders and sending me home, like all my ER visits in the past 8 months. What really was the catalyst for this was the breathing test, and I wish they could connect the dots.

The lead doc asked me to stand with my feet together and close my eyes. I guess I failed that test too, I was swaying all over the place and felt like I was going to fall. I also could not take the heel of my foot and run it down the opposite leg, starting from my knee going down my shin to the ankle. When doing this on both sides, the movement, which should have been smooth, was jerky and inconsistent. I repeated this for the doctor several times. I still cannot do this to my amazement. The neurologist at Maine Neurology never did this particular test on me. He just told me it was fibromylgia - and "fibromyalgia can do anything" which still echoes through my ears.

My mom and I were there at Mass General from 8am to 1pm. The Director of Pulmonary is hooking me up with an excellent doctor who not only is a neurologist but specializes in ataxia. Dr. Systrom, the Director of Pulmonary and Critical Care, suspects neuro-muscular stuff - not cardiopulmonary issues. So, the fibromyalgia at this point is not suspect, which would have to be incredibly severe and unusual for it to fit in this category.

After he examined me, Dr. Systrom said that he was not a "betting man", but if he had to guess, he would bet all his chips into a select few neuromuscular diseases, and that he pretty much knew what was going on with me - and my eyes just welled up. He was very compassionate, with a kind looking face, and then said he was sorry I've had to go through what I have been going through, but he that he knew a doc who he completely recommended. He tried to get that same doc to see me while I was there, but then after he talked to him, but it just didn't happen with the schedule he had. Dr. Systrom also said was sorry to hear I've had so many poor medical experiences in Maine, especially the last neurologist who refused to do a lumbar puncture, which is so important in diagnosing what is going on. When he left the room, I just balled for a minute or two while my mom hugged me. It was a total release, and relief that someone KNEW what was happening to me, and I was going to see the right people who were not going to pass the buck any longer.

Today I looked at the possibility of getting a walker when I get this bad. Going to my acupuncturist tomorrow, if I can make it... Left leg is pretty numb sometimes and I have problems balancing. My step-dad had to pull me up the last bit of stairs by my arms tonight, as my legs could not push me up. I will sleep downstairs tomorrow if I'm in this condition then. Some days are good and others just plain aren't.

My lesson: No one should climb a mountain alone.

The Challenge I Must Face

It's been a very challenging few weeks, to say the least. Last Saturday I was brought to the ER, once again - the 4th time since the Holidays. I took the dog for a short walk, and as I did, my legs felt very heavy, like sandbags, and began to tremble and shake, then I collapsed on the rural road my parents live on. Somehow I made it back to the house and my step-dad saw how bad my legs were shaking - they were so weak he had to help me in. All he could say was, "Jesus Christ."

When I laid down, I started having low back pain, and then he brought me to the ER. Now, my parents live in the Damariscotta area, so the little hospital only has an MRI on some days, not all the time (sigh). I had moved up with them at the beginning of my strange illness, in February 2008, when symptoms of respiratory issues and severe fatigue, as well as joint pain and overwhelming swelling of my lymph areas (my underarms had swollen to the size of peaches).

Last Tuesday, I finally had an MRI of my spine and brain at Mid Coast Hospital in Brunswick, Maine. I still don't have a diagnosis, but the MRI shows I have 3 discs out in my neck, one is pinching a nerve about 1 cm!! But that is not causing any of the symptoms I am experiencing. I will be undergoing a nerve conduction study on June in Scarborough with a neurologist. I assume he will be considering MS, as the ER doc was quite concerned with the symptoms that are much the same. It is quite amazing actually, as I have everything down to the recent speech issues, ringing in my ears, and of course, the original breathing problems:

Multiple Sclerosis: Recognizing Multiple Sclerosis

Multiple sclerosis symptoms generally appear between the ages of 20 and 40. The onset of MS may be dramatic or so mild that a person doesn't even notice any symptoms until far later in the course of the disease.

The most common early symptoms of MS include:

* Tingling
* Numbness
* Loss of balance
* Weakness in one or more limbs
* Blurred or double vision

Less common symptoms of MS may include

* Slurred speech
* Sudden onset of paralysis
* Lack of coordination
* Cognitive difficulties

As the disease progresses, other symptoms may include muscle spasms, sensitivity to heat, fatigue, changes in thinking or perception, and sexual disturbances.

* Fatigue . This is the most common symptom of MS. It is typically present in the mid afternoon and may consist of increased muscle weakness, mental fatigue, sleepiness, or drowsiness.

* Heat sensitivity . Heat sensitivity (the appearance or worsening of symptoms when exposed to heat, like a hot shower) occurs in most people with MS.

* Spasticity . Muscle spasms are a common and often debilitating symptom of MS. Spasticity usually affects the muscles of the legs and arms, and may interfere with a persons ability to move those muscles freely.

* Dizziness. Many people with MS complain of feeling "off balance" or lightheaded. Occasionally they may experience the feeling that they or their surroundings are spinning; this is called vertigo. These symptoms are caused by damage in the complex nerve pathways that coordinate vision and other inputs into the brain that are needed to maintain balance.

* Impaired thinking . Problems with thinking occur in about half of people with MS. For most, this means slowed thinking, decreased concentration, or decreased memory. Approximately 10% of people with the disease have severe impairment that significantly impairs their ability to carry out tasks of daily living.

* Vision problems . Vision problems are relatively common in people with MS. In fact, one vision problem, optic neuritis, occurs in 55% of people with the condition. Most vision problems do not lead to blindness.

* Abnormal sensations. Many people with MS experience abnormal sensations such as "pins and needles," numbness, itching, burning, stabbing, or tearing pains. Fortunately, most of these symptoms, while aggravating, are not life-threatening or debilitating and can be managed or treated.

* Speech and swallowing problems . People with MS often have swallowing difficulties. In many cases, they are associated with speech problems as well. They are caused by damaged nerves that normally aid in performing these tasks.

* Tremors . Fairly common in people with MS, tremors can be debilitating and difficult to treat.

* Difficulty walking. Gait disturbances are amongst the most common symptoms of MS. Mostly this problem is related to muscle weakness and/or spasticity, but having balance problems or numbness in your feet can also make walking difficult.

Other rare symptoms include **breathing problems** and seizures.


It will be a relief honestly, if this is MS, since there has been no diagnosis for 7 months now. They may have to do a spinal tap to get a sample of the spinal fluid to see if there is any evidence of myelin sheath protein which may be breaking down, which is the reason for all of the symptoms.

I have a cousin and a friend that has MS. There are treatments that will improve my quality of life and I will be able to go on. I am not afraid of MS, I just am done with living in limbo. My friend's MRI came out fine, and the only way they dxd the MS was by doing a spinal tap.

The possibility of it being something else, like mitochondrial myopathy has also been discussed by my pulmonologist. He is sending me down to Mass General in Boston (yes, again) for an exercise study. They will make me do yet another exercise study hooked up to 2 catheters out of my arm and neck. They may have to take muscle samples. I do get migraines and all the symptoms of it. However, it is much more rare than MS.

The latest results from my last visit at MGH in Boston on May 22 have interestingly shown a positive ANA (which shows an antibody to my own cells - an autoimmune response), but no positive for lupus or rheumatoid arthritis or any of the others. However, it can take many years for lupus to be diagnosed.

On the other hand, patients with Multiple Sclerosis ALSO have a positive ANA result (as it is an autoimmune disease that attacks the myelin sheath in the spinal cord and brain). In fact, my rheumatologist from MGH encouraged me to see a neurologist, to rule MS out of course. I also made an appointment with the UMASS MS Clinic in Worcester for July after I saw him and after I talked at length with my friend who has MS who encouraged me to make an appointment.

Ironically, I had made this appointment before my most recent visit to the ER. My breathing had become terrible and my knees were feeling that sometimes they were going to give out (and soon, my legs did). I do also experience what are called "tremors" and "spasms" where my legs will "kick" without my telling them to. I also have a problem "knowing" where my feet are at random times when I am walking.

Otherwise, I am hanging in. I really would just like my life back, but I will take what I am given. Sometimes, though, I don't understand why all this has to happen. All I want is an answer, a diagnosis, I'm not even asking for a cure or an end to the daily pain, the fatigue or the fact that my life has done a 180. I feel like knowing what is going on is not too much to ask, especially since it has taken my job, my apartment, and - my life as I knew it.

I am trying not to live in fear. Though the pain can be quite wearing. I think the whole hope of going down to Boston the first time and getting a diagnosis was crushed when nothing came of it. I was devastated, but I have recooped from that. One of my friends in college used to call me "resilient" and now I know why. I have been through some challenges in my life, as we all have, and I've been told those words, "What doesn't kill you makes you stronger" and I used to ask, "Why do I have to be so strong?"

Well, I know this is the answer. I can't think of anything in my past that has been more challenging in any way. There are days that are very bad, but I know I will get through this. I am truckin' on. Or as my friend Lisa in Florida says, "Bring it on!" :)

I feel like I have been reborn to fight this, and I am not the person I was before on a spiritual, emotional and most of all physical level. It's bittersweet and very challenging, and painful inside and out, as some friends I find have not been friends at all - and of course, then, I realize never were.

I think my true friends are the reminders of my strength and new friends are the promise of the future. I know this will be difficult, and I'm not even talking about finally getting the diagnosis, getting treatment, physical therapy, getting well and THEN fighting to get disability. Oh, God - Social Security is terrible so I hear. The system set up to HELP people in this situation, who are fighting for their own health, then have to fight the system. I have a friend who is battling breast cancer and hepititis C who was DENIED and another friend with MS was denied and had to get a lawyer. Apparently, you have to be denied 2x before they even look at you, unless you have a great attorney.

I am so thankful that when I was working, I bought into an income protection plan that will cover me for 52 weeks, as long as my doc ok's it. I just have to stick to the small battles and not think about the whole picture right now. It's way too overwhelming to do that every day.

There is also a frustration that I cannot heal myself instantly, but then I must remember what my vessel is going through, and I have to forgive my own level of energy, which is brought down by daily pain. And I am realizing that it's ok to receive from others. I have always been fiercely independent, giving to others. Now it is my lesson to learn how to receive and depend a little.

But out of this must come Truth. When I do come out of this, I know I will be able to help others who live in chronic pain. It is too much to bear by oneself.