Friday, February 25, 2011

Day 12: Taxes, A Rashy Thing, & Homicide.

February 24th, 2011

How does each day feel like a multitude of days all wrapped into one? Every three hours feels like it's own day full of it's own seperate triumphs and trials.

Right now on Pandora- Philip Wesley playing 'Tears of the East'. Solo Pianist. I like.

I went to sleep I think around 11 p.m. or so last night. I didn't wake up until around 11 a.m. and that was only by my mother's gentle prodding. It's like I never quite get enough sleep. I feel constantly half awake. Sometimes like I'm standing behind or beside myself.

That being said, at around 1 p.m. I got it into my head to make a foray into independance!

Yesterday I *liked* Redbox on my facebook page. Well, that gave me a code that would work only today for a free movie at Redbox. Knowing there is a redbox less than a mile away at a 7-11, I decided I was going to go MYSELF, and get this movie.

The perfect timing of this? Mom was in the shower and couldn't stop me :P I let her know I was going and what I was doing of course, to just charge out the door would have been SO horrible. I did a similar move to my sister on our road trip from Texas to Washington. After our wonderful (said with sarcasm) interaction with the local police in Truth or Consequences, New Mexico, we stayed a couple of nights in Albuquerque. The choice was a hard one, because it put us so far behind in our travel schedule (which we were already behind), but to be in a small space with both of us having tension and frustration and anger and confusion, not necessarily at each other but about all of the circumstances, just was not an option.

So, what I'm saying is I took off while Tana was in the shower and drove the car to the gas station kitty corner across the street. I knew it was a bad move when I did it, and the moment Tana showed up at the gas station as I looked through all the cd's and different souvenirs, my knowledge was confirmed. And seeing as how I have no wish for someone that I love, and that loves me, to actually kill me, I won't do it again.

So, I let my mom know, but didn't give her the option to stop me, and I took off with Kai. I left my walker at home. Can you believe it?

The only walking I had to do was to the car, then from the car immediately in front of it to the Redbox, and then back to the car, and then back into the house. It was only the equivalent of me going from my bed, to the bathroom and back, and from my bed to the kitchen and back. As much as that doesn't seem like a lot, to me, it's HUGE. To walk without my walker? I was ECSTATIC!

I wanted to celebrate by picking up taco bell for mom and I while I was out, but for some reason when I get in the driver seat, I can't remember where anything is and I just end up getting lost. So before I got lost, I just decided to stop at Wendy's and get myself some fries and a burger. "The Baconator!" Single, and a coca-cola. As it turns out, if I had made the corner, and gone down the road a little further, I would have made it to the Taco Bell *sigh* but oh well.

I made it home and shared my triumph with mom, made it to my bed and laid down. I could only enjoy half of the burger before I was stuffed, and not even a quarter of my french fries. Kai enjoyed the majority of the rest of my burger, Qari getting her fair share, and Fizzle taking her sweet time eating a small piece of bacon.


I'm still in bed right now. I want to get up and go to the kitchen and make one of the frozen dinners or cut up some peppers or something- I think I'm out of carrot sticks. Not the point. I just don't want to get up again. As good as it felt to get up and out, I still need to really learn to accurately judge what I can do and respect those limits.

That doesn't make it suck any less.


So I did just get up. I made myself a couple of soft taco sized salad wraps. Of course once again I make more than I can eat. *sigh* Wasn't I JUST talking about respecting my limits? That was a fail.


Something is happening with my skin over the last hour. It is itching but pain prickly. I've got a couple large welts, and it's kind of blistery just like as if I had gone out and about in the sunshine in Texas. It's rashy around my upper chest. Almost five hours later and it's not feeling much better. The prickly itching has maintained, though I haven't noticed anymore welts or blister-like-things. Could have been because I was on the phone and completely distracted.

And doing my taxes. *face palm* See, I can multitask! I can be on the phone having a great meaningful comversation with one of my best friends, be completely mindfogged, and file my taxes all at the same time. During the conversation I was talking about firing my psychiatrist after he told me I acted stupid. I'm beginning to think there just MIGHT be some truth to that statement. *ponders* No, nevermind. Just kidding, on a serious note of course I do stupid things, that doesn't mean I need someone I'm looking for validation and support from to tell me how stupid I am after he previously tells me that I need to get a life.

This skin thing is driving me up a wall. It is almost 11:30 p.m. and it hasn't gotten any better. I also have been able to feel some sort of lump on the right side of the base of my neck that is painful. Hopefully it is just muscular. I have tried meditating but can't relax my shoulders or neck. I'm not sure exactly what to do besides wait for my mom to get home.

Talking to my sister I came upon the perfect analogy of how to describe the prickly skin feeling. It's like when you have a blister that is popped, and you rub the skin over it. Literally that is what it feels like. Which I suppose it makes sense since apparently I did describe earlier that I was having blister-like things.

==== What kind of sad life writes a blog over the time period of a full day?

I did though, finish my taxes. Which is a HUGE relief! But I swear, if I have to read anything else about credits or deductibles? I'm likely to self-implode. That is NOT an open invitation to attempt to make me self-implode. *glare*

My EFFING NECK. *bitch moan complain*

$1500 back on my taxes. Think I'm going to ask the hubbs whether he wants to put $1000 into the trust fund, or whether he wants to split it directly in half to use as we wish. I know I wouldn't mind having $750 in my pocket. I have no idea what I would buy with it, but I know I wouldn't mind having it, and it would definitely get spent. Somehow.


Nothing better than watcing George Lopez make a hilarious joke, and get nothing but crickets. *giggle* Damn. And then he has to make another hilarious joke that makes me like him again. *sigh* Oh, he lost me again! Hurray! Now quick change the channel before he makes another absolutely idiotic joke.

White Chicks? While the Wayans in drag is always delightful, I'm going to pass.

Manswers? Whether they're answering questions about tits or... tits... I don't think there is a tit joke in the world that could make my neck feel better. This pain is quickly becoming a serious issue.

Nancy Grace? I have no wish to become suicidal.

Oo! Man vs. Wild? Didn't he use a sheep carcass to make a sleeping bag? I'll pass.

1 Girl 5 Gays! WHAT THE HELL wAS THAT? I just watched 5 gay guys argue whether they would rather have sex with Jim Carrey or Mickey Rourke. Shoot me. CHange it! Change It! .. after all we all know that Jim Carrey is the real catch there... psh..

How did I end up back at George Lopez? We're going from worrying about becoming suicidal to worrying about becoming homicidal. I joke.

I WILL NOT... *oops*

Wednesday, February 23, 2011

Day 11: Killer Whales and Drugs.

February 23rd, 2011

Orca's. My entire life I have been fascinated and have held an amazing beloved place in my heart for orca whales. No lie. Not because of their other moniker 'killer whales', or because they make a great show at Seaworld (and the show really is great). To be honest, I'm not exactly sure why I love them so much. But isn't that true for all things we truly love?

The news says that it's the J-Pod coming through. They've reported sighting only three whales, one being a baby. This makes me happy, and yet brings feelings of sadness also. One of my greatest memories in my childhood is seeing a pod of what seemed like hundreds of killer whales. The image so idyllic, so beautiful, sometimes I wonder if it was just a picture I saw. It wasn't, but it sure could have been.


Win for my team!

Yesterday mom and I drove around to a little park called Seaview Park. We found two geocaches there! This is the first time I have gone geocaching since... I lived in Texas and went with a friend there. I adore sharing my love of geocaching with others. The thrill of finding a geocache can be amazing!

For the muggles reading, a geocache is generally a container of any size (smaller than a penny to large ammo cans or large buckets) that are hidden by fellow geocachers, and listed on a website such as, and then found by others using GPS coordinates. Of course, Groundspeak (the head behind sells an app for android phones and iphones and whatnot for $9.99 that takes out SO MUCH of the work that it used to involve for me to go geocaching, that it makes finding the caches easier, but leaves the fun and thrill of it all.


WHOA! Did that JUST happen? I mean.. did I JUST HEAR THAT?? President O'Bama is saying "yes" to making all Gay Marriage in the United States LEGAL? *dumbfounded* I have no comment at this time. I figure I'll wait for the idiots to freak out and make their crazy outlandish claims of destroying the country before I make my obnoxious remarks about said idiocy. I personally have no problem with it, because I have something called, "tolerance".


Today, after yesterday's outing, has been tough at best. I have spent most of my day in bed, only getting out of it for basic needs. I keep saying it was worth it, but what a price in pain.

Mom made a comment last night that frustrated me so greatly. She views everything as getting better since I started tapering down the morphine. If she only knew how wrong she was. One of the biggest arguments they had for saying that I was addicted to morphine is this "she sleeps so much." Well guess what, I'm also taking gabapentin. And I've been having increases of the dosages for a long time. Those increases, also cause a lot of sleep. And then my neurologist prescribed elavil. Which increases the effects of gabapentin, and can by itself make you sleepy. So am I tired? Yes. Do I sleep alot? Yes. And look here, the amount of morphine I am taking is INCREDIBLY reduced, and yet I am still sleeping a LOT. What is the different between now and then? I'm in more pain. But Hey! It's proof I'm an addict right?

Another argument I'm an addict. "She's emotional and frustrated." All I have to say is. Duh. You are talking to someone who just attempted suicide Thanksgiving 2010, is in pain 24 hours a day, and who has gone from running in the backyard with her great dane, to having to use a walker to get to the bathroom (if she makes it to the bathroom) in a matter of months. In addition, noone can figure out what is causing the pain. Can anyone in their right mind say they would not be emotional or frustrated? Angry even? The idiocy of it blows me away.

So check it out, one major outburst, and I'm accused of ony wanting more pain killers. Forget that I had my entire prescription of them with me in my purse, and was I trying to take them? No. Did I ever say anything about painkillers? No. *slams head on keyboard*

What makes me feel so frustrated, is knowing that my mom is watching my every move to make sure that I am indeed, not a morphine addict. Because I know my mom. And while she knows with every fiber of her being that I am in pain, and that I don't voice nearly as much as I am in, what that nurse bitch said to her is going to reverberate in her mind and make her question it. "Am I right?" "Does my daughter have a prescription drug problem?" And I want to scream so hard "NO! NO NO NO!" But I know the more I protest, the more they just look at me as though I do.


I don't understand why I have to force myself to suffer in order to prove a point to these assholes.

I got a call today from Dr. Shustov's scheduler. Well. I guess it is his scheduler. I know Micheal is still there but apparently he isn't my scheduler anymore.

Karen has scheduled me for a follow-up visit next Monday. Blood draw at noon, Dr. Shustov and her at 1:00 p.m. I don't even know how to feel about that. I had to ask my sister for her opinion, and was glad to hear that she had the same opinion I did. It would be best to go to blood draw, and if I felt overwhelmed or like I would be unable to control my anger and frustration, to just jet.

I also have the idea that, I said I wasn't interested in an appointment, but they scheduled me for one anyway. That not only shows me that they 1) don't know how to listen, but 2) they have no respect for my feelings or opinions. I know right now, that if I even started getting lectured in any respect I would have no control over myself. I already want to scream at them, going there just seems like a stupid idea.

So I'm stuck on the topic. I'll be talking about it with my mom either tonight or tomorrow depending on whether I am awake or not. Probably not. The beauty of ambien.


Through all of that, I know I am still lucky, because I could have it worse. Things can always be worse.

I was reminded of that yesterday talking on the phone with my best friend in Alaska. She is currently in the hospitol, and looking at a very long in-patient stay. Most people think one week is an eternity. I used to laugh at them on the inside and have a wave of pity for the non-understanding. I've spent months in the hospitol, but she is on track to have me beat. I wish so much that she didn't have to be there. There's a part of me that just wishes that all of the crap I've had to deal with was enough for all of the people I care about to not have to go through it. You know? One of those 'this is so crazy, noone should have to deal with this' feelings.

And even though I wish desperately that she didn't have to be there, with the circumstances, I hope she gets to spend every day safely there. To wish otherwise, would be to wish her unborn child would come early, and there is NO way I want to risk either her life, or her son's life on such a silly wish, as to not have her stay in a hospitol. Even though they suck, sometimes when it's quiet, it's nice. I can imagine that after Connor is born and at home, and she is so busy taking care of Justin and Connor, that she might think back to these days in the hospitol of laying back and feeling so frustrated and likely laugh.

There is SO much to be said about being home, and being around everything familiar. But there is also something to be said about having housekeeping, a full kitchen staff with set mealtimes that you don't have to set anything up for, and for nurses that all try to make you feel comfortable. Well, mostly all that try to make you feel comfortable. Some of them just need to be kicked in the Vagina. Yea, I said it.

I'm not saying all nurses need to be kicked in the Vagina, so no hatemail about how you are a nurse and blah blah blah. I don't care so your message is just going to go into the circular filing system (the trashcan). If you are a nurse than you know more than anyone that some nurses just need one big giant kick. Not ALL, just SOME. Afterall.. nurses aren't politicians.

What? Oh nothing.


Got to chat very briefly with my husband today. Mostly involving him wanting to know what I could have POSSIBLY spent $10 on (Geocaching app). I love him so much, but I so often feel as though he is criticizing my every move and that makes me want to just smack him. But he's a little out of reach being overseas. So he is safe for now.

It's hard for me to remember that he isn't trying to hurt me. I mean, he never EVER tries to hurt me. Nine times out of ten it is all in how I am interpreting what he says, or how he says whatever it is. It is something we have struggled with greatly as a couple for many years. Ever since we were dating actually. I remember one time we were together in public and he just didn't feel like holding hands. I remember thinking he was trying to tell me he didn't really like me at all, or that he was nothing but embarassed to be in public with me. Gah see, my mind is already spiralling around going "Maybe he really was, no, he didn't mean that it was nothing about me, he just wasn't comfortable with it. How do you know what? He could be lying." It's a CRAZY cycle that just never stops.

But if I start going into all of othat right now, I seriously won't end up hitting the 'Post' button.


Monday, February 21, 2011

Day 8: Good Morning Sunshine

February 20th, 2011

"Woohoo, Text Message!" "Woohoo, Text Message!" "Woohoo, Text Message!"

I think it's about time to change the text message notification I have on my phone. If I don't break the effing thing first! It's a complete catch-22. I hate the ringtone, but I am beginning to love being woken up by it because normally, it's my husband on the other end of that god-awful annoying chipmunk message.

By the time he wakes me up, he is about ready to go to bed. We don't usually get to chat long, but I treasure each conversation. He is supportive, kind, caring, and loving. Each person is a combination of both bad and good qualities, and he has both good and bad; but in most cases, he is one of the amazing guys. The kind that women search for years to find and dream about.

I know how lucky I am.

And thankful.


I can't remember last night's dream, only that it left me with a piece of memory as I woke up.

Ever since I started seeing Dr. McCoy (teeeeheeeheheheheheee Yes I've watched my fair share of Star Trek) different parts of my memory have kind of been... awakened? Perhaps that is how I will describe it. It wasn't until I started seeing him that I began to see how I am dissociative in many situations. How I can't remember what happened or happens, but know I was there.  Recognizing things as they happen is one thing, but being able to stop it is another.


I slept again until 4 p.m. Mom woke me up to see if I had taken my 2 o'clock pills. I hadn't. I remember hearing my 2 p.m. alarm clock and mom asking me if I was awake, and I remember saying "no". But when she woke me up saying she wanted to go drive by a couple of more houses, I was down for it 

None of the 3 we drove by I was particularly interested in. .

I'm not quite sure what happened, but somehow on the way home we started arguing about mental health. We all know I need it, and I was being super serious telling her how important it could be that she pursue some counseling herself. Not onl due to the crap I've put her through, the trauma of having a child with leukemia, not to mention the suicide attempts.... but from her own history as well.  I hear the same stupid arguments that I've given and I just want to scream!

What really makes me want to scream, is how she brought it up as a serious idea that she was considering asking if I thought it was a good idea, I agreed, and then it was like she shot it down. It's not all about me.... wait.. this is my blog.. for the moment it IS all about me.. but I felt like I was being told my opinion wasn't worth anything, and by extension, my being was worthless.

Extreme? Probably. But that would be typical Borderline Personality Disorder. Everything that is said or done, is searched for clues (even if they don't exist) that I am going to be dropped, dumped, let down, in short; abandoned. If I am worthless, than she won't want me here. And how does one respond to not being wanted, and having nowhere else to go? Anger? Resentment? Frustration? Does it all make sense? NO. Emotionally it makes NO sense to believe that my mother feels I am worthless. As it happens? My brain screams at the reality of it. And this is the dilemma I am hoping that joining the Psychiatric study at UW will help me with. To not have to wait a day of thinking after fighting with my mom to realize that my brain is being retarded.


Sunday, February 20, 2011

Day 7: The House Hunt

February 19th, 2011

Today was as close to great as I have had in a LONG time! Although I woke up in the usual pain, but was woken up by the man I love the most in this world: My Husband! Not by his voice, but my cell phone going "Woohoo! Text Message!" repeatedly as he spammed my phone with "hello, hello, hello, hello, hello." If I wasn't so happy to hear from him I probably would have gotten pissed.

Mom and I had decided to go drive past a couple of houses that I am interested in. They are both in Auburn. One is a 3 bedroom, 2 full bathroom home with a three quarter acre lot. The second house I'm probably not going to talk about much, other than to say if I was healthy and wealthy enough to put humpty dumpty back together again, I would jump at the chance. Unfortunately it is way out of my financial ability, or physical ability, despite the increble dreams and possibilities for the property. So back to House #1

As we were going there, I had my "YES! THE WTF MOMENT OF THE DAY!" as we drove past a homeless guy pissing in some bushes underneath the freeway. It's those moments that really, just really, can make the day. And you know what? Seeing a homeless guy piss under a freeway, just made my day. Yep.

This house is immediately bordered by two things. The first, is a beautiful park. The second, is the back end field of an elementary school. We were there when school was out, and I was excited to see all the kids playing outside, and parents that were playing with their children in the area. Tossing a football back and forth, riding bikes, all sorts of things. It made my heart warm. The property itself has a "come to me" type of aura. I felt invited there. Not to mention the 7-11 down the street has MY MONSTERS!!! OH MUH GAWD!

At the same time, the property itself is HUGE. The lot itself is big enough to subdivide into at least three properties. Only keeping in mind that some day, we would like to have a property where mom can live in her own home, but right next door. To some that would be extremely odd, but not to us. She's my best friend!

My mom and I have an incredibly close relationship. As far as things go, I can only say that there are a handful of direct people that have seen and stood with me through every single aspect of borderline personality disorder that I have. Even though I was only diagnosed in Texas, I have had it for.. ever.. and the more I learn about it, the more I understand why I react to certain things in certain ways, and why I do some of the things I do that I have tried to change for aGEs, Not everyone might believe I have BPD, and in fact I have had several people tell me 'no, Maria, you don't have that!' But in fact, I do.

After we drove past the properties and took some video footage and some pictures of the outsides, I was not ready to go home again. I finagled mom into driving me to Barnes and Noble, and we looked around at books for a good couple of hours. I found some books instantly that I wanted to purchase, but knowing I am on a budget, after picking them all up, realizing I couldn't hold them and stand up off my walker to set them down, put them back on the shelf, and in so doing was able to move on to not purchase them that instant. I can be horribly impulsive and it devastates our financials. Furthermore I can become aggressively defensive over that impulsive choice, even if I am also sitting there going "WHY DID I BUY THAT??" And then blaming myself into a horrible cycle of depression.

I've often felt crazy, so to realize that all of my behaviors and feelings fit DIRECTLY into a diagnosis makes me feel... almost.. incredibly sad and yet vindicated. I am not crazy.

Well, anywhoo... I keep bringing up borderline personality disorder because I bought a book called "Stop Walking on Eggshells, When someone you love has borderline personality disorder". I read a third of the book last night, and probably another third tonight, if I don't finish it. Reading it is hard though. As I read, I identify with all of the actions, and then they describe how that action affects the 'non-BPD' in the situation. Which is totally not in any way how I feel about it, but then it says that the borderline and the non-borderline may see the same situation in completely seperate realities, that are all completely unconscious behaviors. So how do you stop an unconscious behavior? I have been working for years to identify when I am getting angry and how to deal with it. Or how to deal with other emotions or situations that come up.

I have learned that when I am about to rage at my husband, that I can articulate to him that I am in a rage and that at this time, I cannot be held by him, talked to, kissed, or ANYTHING at that moment. I have also learned how to communicate that while I am about to rage, or during, or after, that rage was not directed at him, that it had nothing to do with him- and how important it was for him to remember that I can't control when I freak out, but to know that I do love him, I DO LOVE HIM, and that I don't want to hurt him, and how he can't take me personally when I am in a rage.

How I can say things that may be true (right then in that moment) but in five minutes I feel a completely different way. Reading this book just puts me on edge wondering how much every friendship I have had has been affected by this behavior that I never realized, or never understood because of the disorder itself and the type of thinking involved in each behavior.

Analyzing one's self in incredibly frustrating.

I want ice cream.


Day 6: Bring on the Pain

February 18th, 2011

Last night was brutal. Just brutal. I had so much anxiety driving to that seminar, that it was almost not even worth it. Of course, the seminar itself I was incredibly disappointed with. Don't get me wrong, there were some good parts, a couple of inspiring parts (One that almost made me cry), but as a whole? I wanted to just get out of there. Except I couldn't. The whole, respecting limits thing. I wasn't going to leave and drive fresh off a dose of morphine= that would be just stupid. So I stayed and crocheted a pig.

On my way home, I got somewhat lost in the neighborhood outside the library. I was doing alright until I decided I was going to stop at 7-11 for a movie. I ended up driving over the curb, over a sidewalk, into the parking lot. *slams head on keyboard*

Not only is that embarassing, it fucking scary. Scary as HELL. Thank god for my best friend Tana, who helped me calm down via text and helped me process what was happening so I didn't just freak out. I went in and got some 'gummy grizzly bears', an ice cream cookie, and a Sobe green tea. I got the movie 'Red' from the Redbox, but didn't watch it last night.

Instead, I'm going to watch it with mom when she gets home from work tonight.

Otherwise, today has been a complete nightmare. I have a feeling this is only the beginning of what I'm going to be feeling like. I am not excited.

Irritable, feeling constant pain, any movement just sending shots of sharp twinges through my back, hip, and thigh. I started taking a pen and drawing everywhere I felt the pain.

I've slept as much of the day as I can. Everytime I wake up, it's cringing, and everytime I try and roll over, it's another shot of agony.

Mom woke me up when she got home. It wasn't even 1 a.m. yet! Can you believe it? Home early. Guess she was excited to watch the movie. *chuckle* And it was a DAMN good movie!

Comedy, guns, exploding people, love, and I have to say, Even though I HATE John Malkovich, I absolutely ADORED him in this movie. Just something about him playing a guy who was experimented on with LSD for 11 years that just makes me giddy on the inside.

After the movie, mom and I got my pills ready for this next week. I'm still taking the gabapentin because it has made such a difference and I am convinced it will continue to. I am also taking my celexa, because I know me, and I know how much that antidepressant helps me. I have to take it every day- it isn't one that stores up in the body. Any of my closest friends can tell if I haven't taken it, the instant change of anger and frustration is palpable. I am also taking the elavil my neurologist prescribed. He said it could enhance the gabapentin's effects, and it is also an antidepressant, although he said at the dosage I am at, it does not generally have the effect of an antidepressant. Also, Lybrel. It's a birth control pill.

Even though my husband is overseas, if I quit taking it, it's likely that it could trigger some sort of menses like thing even though I am in menopause- the issue is my vaginal stenosis due to graft versus host disease. Someday I'll be going to a reconstructive surgeon to fix it, but that day is not today, nor tomorrow. Unfortnately I have a large...... some sort of cyst type thing the size of a fist (roughly) because of stopping Lybrel back in October for a couple of weeks. I trust my gynecologist at the S.C.C.A. She has been gentle and understanding with me ever since she met me back in 2007. She has never pushed anything on me, always appreciating my decisions and my own knowledge. I appreciate her. I respect her.

We also spent time seeing how many Morphine ER pills I have, and how we can taper down my extended release dose. We have it set now for what we have-- we only have 3 weeks worth and are going to just go with it. Hopefully within my mountain of library books I picked up we will glean useful information that we can utilize to help deal with, ease, or completely reduce the pain before that point. I am not looking forward to not having pain suppression.. every time I have gotten to that point the pain was so bad I became completely suicidal. Joy.


Saturday, February 19, 2011

Day 5: Respecting Limits

February 17th, 2011

I cannot believe I am writing this and making it public. I promised a truthful accounting of my life, and damnit, I can't hold back. Beware; this may constitute TMI, and if you make fun of me I will hunt you down and smack you. Hard. Promise.

I wet the bed last night.

*hangs head*

I kept trying to move my legs to get up but the pain was severe. I made it to the bathroom, but had no strength to do anything else. My ambien mind didn't think to call for mom's help, nor did I want to. How humiliating. Almost twenty-seven years old and I'm writing a blog about pissing myself. I'm sure it won't be the last one.

I wiped up the bathroom floor with my wet clothes, and made it back to bed. I didn't have the strength to even move the books from the dry side of the bed, so just huddled around them to sleep on the dry half.

I feel like such a complete loser. It's times like this that seriously derail whatever sense of self accomplishment I have built up to this point.


Mom and I talked in the car today about... something... it involved breast cancer, the Susan G. Komen Foundation, and wishing that blood cancers were made as public as boobie cancer. We began talking about leukemia. About all of the advancements made to treat leukemia. And somehow, my mind wandered and hasn't stopped since. With all the advancements to treat the disease, it seems like the side effects of the treatment are... left behind.

I have acute and chronic graft versus host disease.

I just read a blog, of a young man who died after his bone marrow transplant from complications of graft versus host disease. It makes me want to scream and cry~ I struggle so much every day to contain every ounce of unhappiness and to just stay thankful for my life and everything in it-- but then moments like this happen. Moments where I just feel scared. I feel alone. I feel empty. I feel pain. I feel guilty for being alive, although I'm sure that doesn't make sense to most. I've been told that is stupid- I've been told I should just be thankful to be alive.

I am thankful, but that doesn't mean I don't struggle every day to stay that way.

And now I'm forcing myself to struggle even more.


Ugh. Withdrawals. I'm glad I have the knowledge to recognize what is happening to me. The intermittant sweats, the abdominal aches, the runny nose, the tingles- They don't all hit at once you know. Just a little at a time, until I can't handle it anymore and I soothe the withdrawal and the pain with just a small little white pill.

I am proud of myself- I have weaned my body down in dosages. instead of 6 pills a day, I only take 2. Instead of 90mg of extended release, I only take 60mg.

It's like a full out war being re-enacted inside my body. And I'm not talking like modern day warfare, I mean muskets, cannon balls, and bayonets vs. mass guerrilla warfare tactics.

Morphine vs. Pain.

Speaking of morphine, mom and I went to the SCCA today to get refills I had called in for refills before the whole pain clinic fiasco. When I got up to the counter, somehow, mysteriously, I had a prescription for more morphine extended release tablets. I don't know where they came from, I didn't want to get them but mom gave me this looks like "Yes, shut up!".

The thing is, I know that I need them in order to continue tapering, so I don't want to complain about receiving them. Mom even did explain to me that at one point before my trip a prescription was set up to be given to me at the appropriate time. I'm thankful and glad to have these additional 25 pills to allow me to taper much much better-- but it is still completely frustrating. I told Karen I wasn't going to get or take anymore, and here I am accepting a prescription that I'm not even sure how it got up to the pharmacy.


On Day 1: Research while we were at the Lynnwood Library, I saw a flier for an event about cancer for women and nutrition and juicing for health during chemotherapy. I wanted to go very very badly, but it was at 7:00 pm. That means mom would already be at work, and there isn't anyone I would feel comfortable asking if they would be willing to drive me there.

So I made the decision to drive myself.

To say both mom and I were nervous about this decision is an understatement. It's kind of funny that I'm not nervous to stop major medications, but I am nervous to drive to the Library at 7:00 p.m.? Somehow it makes complete sense to me. After a somewhat short discussion with mom, we decided, or I decided at least, that I would go to the Library at 6 p.m. take a morphine after I got there, and stay until the library closes at 9:00 p.m. The reasoning being 3 hours would have passed since taking the dose of morphine, and most if not all of the effects would have worn off....

Then mom made a statement that completely took me by surprise and I wanted to reject IMMEDIATELY!

"You have to respect your limits, Maria."

I mean, limits? Limits? I'm not limited! The sky is the limit! ..... right?

Not quite. I very awesomely have extreme limitations. Interestingly enough it had been thrust into my immediate purview earlier at the SCCA when we went to go get my medical records and refills. While at the pharmacy I received a phone call from the therapy study that I have an in-person interview with on March 2nd to give me the parking code for the handicap parking lot. Interestingly enough the password is "BAGEL". That made me laugh immensely since it was a bagel that tried to kill me in Texas! (I was in the hospital for a week with a bowel obstruction after eating a bagel).

Well, without thinking I leaned down to grab a notepad and pen out of my walker, and BAM. I almost fell but regained my balance. Thank goodness for my walker being there, because I am fairly certain hitting the floor would have hurt more. The twinge of pain stopped me from walking the rest of the time we were at the SCCA. 

I have to be extremely conscious of every move I make- and one slip-up like that can devastate my entire plan. I also have to be conscoius always of how tired I am getting. There is a direct correlation between how much activity, how much pain, and how tired I am. I have to respect that.

I don't want to, but I have to.


Wednesday, February 16, 2011

Day 4: Cardstock! NAO!

February 16th, 2011

After waking up at 6 a.m. for my extended release morphine and gabapentin, I went right back to sleep. I always feel so strange after I wake up from sleeping. As if no matter how long I slept, it is a new day. Yesterday I fell asleep shortly after mom left, and woke up at 9:45 p.m. and thought it felt as though the whole day was a full day away. As if somehow, at 9:45 p.m. a new day was starting. Strange, is how it felt. As though I were missing time. So when I woke up again this morning, I thought I had to take my morning meds all over again. I was incredibly confused as to why the morning meds were gone from Wednesday, but none of the other dosages (2 p.m. and 10 p.m.), and how I didn't have Thursday's out on my nightstand.

The pain in my hip was staggering. However I had slept, whether at night or since waking up at 6 a.m. apparently did not agree with my nervous system. It was that weird feeling like you just want to twist your leg at the hip joint to stretch out the muscles or ligaments and tendons or something- but at the same time, you know it won't feel better and just want to keep twisting until you rip it off. As if somehow the idea of a ripped off limb would feel better than the constant pounding of rebar through my hip. It's not even pounding, it's just a constant...... ...... ....... GAH finding words to explain it is so incredibly pointless.

Ok, there is a made for tv Alice in Wonderland movie that was on the SyFy channel. In the movie, they would take humans hostage and 'drain' emotions from them, distill them into liquid form, and then the queen of hearts would take them, distribute them, or sell them like crack cocaine. That in and of itself has absolutely NO relevance to my rant, except that I wish I could somehow 'drain' the pain, and give it to my old doctor's so they could see exactly what kind of pain I am in. So they would know what I am talking about and not just call me crazy.

Somewhere in the midst of my mind wandering in the morning, I decided I wanted cardstock. For those unaware, cardstock is just a thicker type of paper. Kind of a halfway meeting point between posterboard and regular paper.

At about 11:00 I asked mom if she could go pick up some cardstock for me at Wal-Mart. I can't remember what she asked me then, but I do remember the distinct feeling of "Oh Dear Lord, I better go myself." So I asked if we could just both go, and off we went on our grand journey of the day.

After passing the zebra (I'll write about him some other time), we eventually came to a stoplight. At the stoplight was this great old man, who in Alaska would look right at home, but here in Lynnwood.... he was COMPLETELY out of place. Great old Sourdough looking guy. Obviously one of those 'bush' guys that grows a lot of weed but pretends he doesn't, knows how to start a fire ANYWHERE, and even though you are pretty sure they don't have a vehicle, they somehow end up everywhere you go... even if it takes forty-five minutes to drive there. This guy was carrying an awesome classical guitar strapped around his front, and from the pegs hung a hot-pink monkey.

I shit you not.

And just like that, my day went from okay, to awesome.

At Wal-Mart, I got my cardstock in white, black, and primary colors, I got a new candle in the scent 'bamboo jasmine' and a small one of 'lavendar' to help me in my meditation and to relax. I also got a couple of small trash bins for my room, which I have greatly needed since I first moved in. One of those things I always remember at the wrong time. Well somehow, I remembered today and got just a plain black little trashcan with hooks to hold the handles of plastic bags.

When we got home, mom drew up a nice bath in the tub and helped get everything ready. Thank goodness too because I really needed a nice relaxing soak. There has always been something really special to me about being submerged in water. The feeling of being enveloped, almost like the water is giving you a great big hug. Maybe it's just the Pisces in me. The point is after getting out of he tub and back to my bed, dressed and warm, incredibly relaxed and uplifted.. the phone rang.

BUHN BUhn, buhn

It was Karen. She introduced herself as if I didn't know who she was or who she worked for. Immediately I was frustrated. She told me she was calling for two reasons. One to make sure and see if I was alright, and the second, to find out if I wanted to make a follow-up appointment to see her, and if I were going to continue with the pain service. I told her I was fine, and that no, I didn't want an appointment, and no, I wasn'g going to follow up with the pain clinic anymore. She asked who was going to be prescribing my pain medication. I told her noone, I wouldn't be taking them anymore.

WHAT? I could almost hear her mind getting confused as I said it. You mean, a pill junky stopping taking pills JUST like that???? Why would she do that? It doesn't make sense! Either she really is a junky, or she never was in pain, or... what if she wasn't a junky and she IS in pain?

Me thinks she is about 3 steps behind the whole picture.

Of course she had to "follow her duty again" and inform me that ".. didn't I know I would have withdrawals if I just stop taking them, I've been on such a high dose for so long.." I could only grunt "uh huh". Of COURSE I am going to go through withdrawals. For crying out loud REALLY? This isn't my first song at the karaoke bar you know. There have been times I have been out of pain medication and nurses at that same clinic have tried to make it impossible for me to get any medication, and I had already started withdrawals. But of course THAT wouldn't come to mind, no, my care at the SCCA has always been perfectly fucking STELLAR.

Stellar like the time they told my mom al I wanted was pain pills, and couldn't she see that? I had the pain pills with me and wasn't taking them, but of course that MUST have been the issue... It couldn't possibly have been how much pain I was in, and that the pain clinic refused to even acknowledge my pain, treating me like I'm a junky, and like my mom and best friend are just duped idiots. I must be REallY hard up for morphine, because how many junky's do you know who allow themselves to be poked and prodded as much as I have? I mean come ON?! I'd have to be one SICK individual!!

But I guess it is easier to think I'm that screwed up, than it is to think I might actually be in pain.

I don't understand it. But that's coming from the screwed up psycho in the corner. (Me).


No, I accepted that I would go through withdrawals and be stuck in extreme pain unless I find other ways to deal with the pain last thursday. The moment Karen said that the pain clinic was sticking with their opinion that physical therapy would be my cure-all.

Bitches. All of them. One day I hope they feel half as much pain as I feel every day. And I hope they have just as much trouble as I am getting help for it.

..... what? Me? Bitter? ........ just a little..... no, okay.. a LOT bitter.


Oh. 'Paranormal Acrivity 2'? One thumb up, one thumb down. Not as good as the first. Not only was scare factor not quite as there- but the first movie had me left with "Oh shit, that could happen to me!" and the second was more like "Idiot, who REALLY struck that deal with the demon for the first born son?" Although how the two movies tied together was pretty cool.

I also just finished watching 'A Tall Dark Stranger'. *sigh* It's not even worth talking about. If you want to watch it, watch it. If you don't, definitely don't. If you aren't sure if you want to see it or not, just.. do yourself a favor and pick a different movie. I feel like I just slept through that movie, and have just completely lost that time. And it wasn't even enjoyable.At least when I actually DO sleep I get... some sleep.. Wow. That was a sherlock moment right there wasn't it??

Day 3: I'm a Washingtonian! Or am I Alaskan.. I don't know!

February 15th, 2011

This morning I meant to get moving a lot faster than I did, but I just couldn't. At 6 a.m. my mom woke me up to take my gabapentin and morphine extended release, two medications I haven't given up on yet. My original medical medication list hosted 23 or 24 different medications. However, this morning before I got dressed, I got one of those inkling little bugs that say "Hey, find out about THIS."

This little bug was about the muscles in the lower back/hip region. The gluteus medius. As I was reading, I about fell off my bed! There are pieces of the visit with Dr. Fitzgibbon at the pain clinic that I cannot remember. Pain has a funny way of distorting appointments when they are trying to teach you things. Pain has a LOT of funny ways, but I am not getting into that right now- I am trying to remember Dr. Fitzgibbon's speach to me. Ah yes, that is right. He was talking about how when he asked me to raise my right leg I could not raise it very high by myself without considerable amounts of pain. However, when he raised my leg, he could raise it considerably higher than I could. He obviously didn't realize that the pain was still there when he raised it, and extremely bad when he moved my leg side to side that made me start crying- but hey. He's the doctor right?

So during my google-craze, I noticed something about trigger points, and how they refer pain- and I was learning about all sorts of parts of muscles- and I was also realizing Dr. Fitzgibbon may have been on to something. What he did with the injection was wrong- but he was definitely on to something that no other physician had come up with. Because of that, I am looking into additional forms of therapy that I was interested in before but am somewhat afraid of- such as acupunture and accupressure.

Anyways, after my foray to the local library yesterday, it became extremely clear that I needed to get a current drivers license and identification card. So mom and I went to the DMV in Lynnwood. I got a number and found a place to sit, pulled out my book, and started reading.

And then I started falling asleep.

Mom kept poking me every few minutes to make sure I opened my eyes and blinked a few times because I was wearing my boston lenses. Unfortunately when you have boston lenses you are not allowed to sleep for longer than 15 minutes with them on. I learned the hard way that when you do, the dryness and irritation that occurs on the upper eyelid adds for much more increased pain than anyone would want to deal with in their eyes. Not being able to blink is extremely irritating. It's something that just comes naturally to everyone! Although after chemotherapy and a bone marrow transplant, blinking doesn't quite have the same effect as it used to since chemically my tears aren't produced quite right and so they tend to become more of a gooey mess that doesn't actually moisten the eye. That accounts for the extreme dry eye and pain.

By the time they finally called my number, more than a couple of people had left in a huff after repeated mutterings about how slow they were. Most of the time I just chuckled at them, but one man flat out annoyed me. He kept calling different people on his phone and.... doing what I used to do. LOL. Isn't it odd? To be faced with something that you know you used to do, and to realize just how obnoxious it was? I honestly wasn't sure whether to laugh or to face-palm myself.

The gal at the counter was quite nice. I explained the situation to her, that I had come to Washington originally for medical treatment, but that I was going to become a permanent resident. She asked what type of medical treatment and I told her. Apparently they would have to require a medical release for me to get a Washington drivers license, so I opted to simply get an ID card. She handed me back my driver's license. I have no idea if it is even actually legal to have an ID card from one state, and a driver's license from another. It doesn't make a whole lot of sense to me, but noone stopped me or said anything about it, so who knows!


On our way home, we stopped at 7-11 and picked up Paranormal Activity 2 from the Redbox. I'm oddly in the mood to get scared about something beSIDES my health for awhile......

Monday, February 14, 2011

Day 2: You're Fired.

February 14th, 2011

Enjoy your Valentine's Day? I hope so. I honestly believe everyone deserves to feel loved and supported. Feeling supported is such a huge part of what I consider important in any kind of relationship. Whether it is between family or friends, your lover or your medical team, feeling supported is part of the foundation of trust. And unbreaking trust, is such a huge part of happiness.

My morning started with my weekly psychiatrist appointment. Today was such a huge day as far as this appointment was concerned, whether he (my psychiatrist) knew it or not. Today would determine whether I continued to see him, or seek help elsewhere. So much has happened over the last two weeks, that what I needed was that support. I needed gentleness. I needed understanding. I needed direction. I needed to know I had someone outside of my immediate family and friends that I could talk to that would be a rock for me to lean against emotionally while I learn to sort through the miriads of emotional issues and mental disorders that I have been diagnosed with over the last six months.

I didn't get any of that.

Instead, I was informed that I acted stupidly, and that I needed to put myself in the social worker's shoes.

I got up, said goodbye and informed him I would not be coming back as I walked out of the door.

Why do I have to put myself in their shoes? Isn't it their JOB to put themselves in MY shoes and figure out where I am coming from? And if it is not, why must I always be the one to bend myself to everyone else? Why do I always have to be the one trampled on or put at the bottom of the pile? Does that seem fair to anyone? Why is my pain, or anger, or frustration, less valid than anyone else's? To my eyes, it isn't. And I have no intention of allowing anyone to make me feel as though it is. I don't care if they are the premier medical community of the Northwestern region, or if they have been practicing psychiatry for more years than I have been alive.

So that was the end of seeing psychiatrist McCoy.

Afterwards, when I had regained my composure, Mom and I went shopping at Fred Meyers. I have been craving foods like sprouts, carrots and bell peppers. I have no doubt in my mind that they will be beneficial to this new life, and have no intention of fighting those cravings.

I also purchased a three-ring binder, page protectors, and some trading card pages to organize the abundance of information that I am collecting. I should have bought another tiny little notepad while I was there as my poor little $.99 notepad from Arizona is already filling up quickly with information on all sorts of alternative therapy such as Aromatherapy, Biofeedback, and Ayerveda. At least those are topics on the page of the notebook in sight on top of the Cancer Society Guidebook.


Last week ar the University of Washington ER when they finally discharged me realizing "hey, she's not suicidal, she's just PISSED OFF" I got a brochure about a type of therapy for women with post traumatic stress disorder and borderline personality disorder that is low-cost/free for a year, and they will pay me every four months to be part of a study. Since I basically fired my psychiatrist today, I just called and scheduled a phone interview for tomorrow to see if I qualify to be accepted into their program.

Just because I give up on the Cancer Care Alliance, and pretty much all western medicine and practitioners of it, does not mean I give up on my life.


Sunday, February 13, 2011

Day 1: Research

February 13th, 2011

Today, is day one of the next chapter of my butterfly life.

In light of recent events, I am leaving the care of my doctors at the Seattle Cancer Care Alliance. It was made clear to me that they have no interest or desire to truly help me, or to figure out what is happening to me. The truth being, that I do not, as I have never, fit into the preconceived notions of what the human body should do.

In leaving their care, I am also stopping almost all 24 of my medications. This action will have it's consequences, but I am willing to accept them. The more I have learned, the more I feel this is the correct action for me.

Instead, I am focusing on more traditional and non-conventional forms of therapy.

Today, my mom took me to the library and helped me search through the electronic book catalogue to come up with a list of books to help in my learning. This week is dedicated to it. Unfortunately since I didn't have a library card before-hand, and I do not have an ID that shows my current address, I was only allowed to check out five of the twenty or so books I had chosen.

1) American Cancer Society's Complete Guide To Complimentary and Alternative Cancer Therapies by The Experts At The American Cancer Society

2) Get Fit While You Sit, Easy Workouts From Your Chair by Charlene Torkelson

3) Tai Now, Daily Wisdom from Mystics, Sages, Poets, and Saints by Josh Baran

4) A Guide To Self-Healing From Chronic Pain, Effortless Pain Relief By Ingrid Bacci, Ph. D.

5) Dragon Keeper (lets be honest I need a little bit of fun reading!) by Robin Hobb.

Today, also, is the last day of my "eat-like-crap" life, and beginning of my "eat-to-live-successfully-and-be-healthy-and-painfree" life. If only I could have gotten all the books I had picked out!! *sigh* Well, at the rate I am going I am not going to have all of these books long. I have already started reading book #1 and notating the passages that at least on the outset I feel apply to myself. I am continuing to read it however, and have made a nice dent.

At the same time, I have started crocheting myelf a bookmark. I have a feeling a nice bookmark is going to desperately be needed. Probably multiple bookmarks. I am thankful at the moment for sticky note tabs.


Today at the library, I witnessed a young boy and his father. The young boy picked out books, and got his very own library card. The father was so proud, and the young boy posed for pictures with smiles and pride. Something about the love and pride between the father and son brought a much needed smile to my heart.

Someday, I will be bringing my own child to a library and taking pictures of them as they proudly pose with their first library card and checked books. Someday.

For now, I have to continue to focus on getting my body healthy, being able to stand, sit, and walk without disabling pain.


The bottom line is this: