am i retired yet?

it feels like i should be sometimes.

more so today because i have already eaten dinner and it's just 6pm.

i am not retired, i am far from it. i actually have no idea how i will ever be.

i think I'd be good at it. just like I'd be really good at being rich.

i am feeling the light change in the way i do most years.

like someone hog tied me and plunged me into ice cold water. but upside down, so my face is up and out of the water, gasping for breath and trying to keep from freezing.

this is somewhat softened when i am under the spell of 5-HTP and Tyrosine, doing their level best to assure me that it's perfectly natural for the sun to go down this early and for my digits to feel the wrath of the increasing cold.

it generally works. usually after i freak out in many different ways and then realize it is just the season. no one. i repeat, NO ONE living in New England makes enough vitamin D for this.

it makes me more aware of needing a hobby that doesn't involve walking anywhere or going outside at all. and yet, my body thinks that after eating dinner before most people get home from work, i should then retreat to the bedroom.

this is where my coveted turquoise velour suit is kept.

if the soft and forgiving legs and arms of this fantastic 2 piece even brush against me, i have been adequately seduced into cozing around my house for the night.

snacking, lounging, perhaps with some Malbec or trance inducing folky lullabies.

all the while, in the back of my noggin, wondering, when is it coming back? the light? the ability to have freedom of movement and ease.

well, we have a while still, folks. and i for one, am keeping vigil for the day when things turn around. December 21st.

so that's it really. i just wanted to spill out a bit of this clamor in my brain.

i hope you are feeling warm and fairly, if not fully, satisfied.

xoxo

Oh Hai there.....

Wow. (she says sarcastically) i managed 5 blogs total for my last stay.

i think i was busy doing other things, like surviving.

For an update on the happenings of that area of my life, i am happy to report that i am idling at a level of 3 times higher than high normal - which is miraculous as a concept for me, given my own history with this struggle. This means it worked. and you helped.

YOU helped ME.

thank you.

i am back at it. on a lower level and without urgency. it feels lovely.

However, this new chapter is not about that. It's about everything. or anything.

this also feels easy and natural and authentic to who i am. more all encompassing and connection driven.

Welcome.

Since we last spoke, MANY things have happened.

in order.

-at the end of my stay in AZ, my Mom almost died. really.

during this brief and emergent time i was the caretaker of my Stepfather. we were allotted these 3 days to arrive at a truce of sorts. an understanding. a 'you are ok with me' moment. we fully and wholeheartedly did this naturally. a gift that i am most thankful for.

-Seth and i embarked on the journey of home ownership! we found it, we saw it, we offered asking price...and we didn't get it. Until we did get it. because the first offer fell through leaving us up to bat as the back up. It was excruciating for me as a being. Voluntarily stepping into a world that i purposely stay quite far from. deadlines, money, fake smiles and concern, and meaningless busy work. In the end it was, of course, worth it. $220,000 worth it. Furthermore it is on Love Lane.

-17 days after closing on the house, i received an expected call from my Mom, letting me know that there was nothing more that anyone could do for Doug and that all treatment for his aggressive lymphoma had ceased. i flew out 3 days later and 15 minutes after i arrived at the house, he passed on. took his last breaths. HE waited for ME. He was wearing his Hawaii shirt, since he'd never been and had always wanted to go. He is now where ever it is that we ascend to and i assure you that we do ascend, i could feel his soul leave his body. We spent the next days doing what you do when people die. Crying and paying money and planning and eating and ...driving 1500 miles with a corpse in a U-Haul trailer? yep. we. did.

Honoring his last wishes we drove up from Arizona to Iowa to lay him down in the state of his birth. It's seriously astonishing that we got there.

We stayed in his family's century farm, with 17 farm cats and an amazing Farm All tractor collection. I ate pork sausage twice a day for 3 days, other meals included beef and cakes.

There were corn and hogs as far as the eye could see. i was a fish out of water.

-on the first of August, i returned home. i don't think I've ever been quite as grateful as the moment i fell into the arms of my sweetie at the gates of Logan Airport that evening. I chattered the entire drive, holding onto him and remembering where i was every so often. Something about him was different, something that people like me can see. We came to our new house that i had spent hardly 3 weeks in. He was VERY excited to show me our newly converted shower, which i aggressively insisted be fixed upon my return. I was shell shocked and disoriented and emotionally husk-like, so none of these proceedings seemed the least bit strange. He put on Richard Buckner and ushered me into the prepared bathroom, which was lit up by candles and covered in rose petals. Still, unfazed, i remarked at it's beauty. He wanted to look at the shower and watch how it worked. after trying the knobs and having no luck, he got in the tub to turn on the water in the back. i was quite concerned that he was going to get wet and warned him of this numerous times. After reaching behind and pulling out a hand towel, he unveiled what had been awaiting us since we'd met, a beautiful engagement ring! he knelt in the bathtub and poured out his heart. I could hear drops of this pouring, but most of it was drowned out by my own mumbles and shrieks. Although unable to take in all of these words because of my then harried state, i made it known that the answer was YES and we went off to sushi to talk about the rest of our lives.

so. there it is in a nutshell.

i felt the need to write this morning so i decided to start back up, but wanted to assure that you knew what you were getting into before i rambled on again about whatever unsuspecting crossed my path.

i hope you are all living fully and lovingly.

i am doing my best.

xo

after the storm

It is finally sunny.
In the past week, we have received more rain here in Phoenix than the whole of last year. It has been declared a state of emergency, record rain and snowfall, flooding, 50 mph winds.
It just kind of felt like normal to me being from the Northeast, but it's totally not normal for the natives.
Let's see.
So, on the night of my second IV...this was Wednesday....i had an allergic reaction because of cross contamination of a large vial of ALA. Basically towards the end of the bag my eye started to itch and felt like i had something large in it. i rubbed it and blinked alot and finally checked it out, only to find it looked like an apricot. i could hardly open my right eye and my left eyelid was starting to swell. My mom gave me Benedryl and then offered me some shady steroids. I was sort of beside myself. i did not take the steroids, which she was happy for, and i ranted a bit in the kitchen about only drinking juice, getting a lot of IV's, having my eye be enormous, was i going to die, was this going to go away, - the whole lot.
She checked on me on the hour after i went into my drug induced sleep. It was better in the morning, but not all the way better. The right side of my face kind of looked like I'd been Avatared.
We then proceeded to leave 20 minutes late to get to my appointment, this is something i despise. It was fine when we got there, but it's not about it being fine. It's about being respectful, courteous, and realistic. Even when the Doctor or hairdresser or whomever isn't those things, i like to hold personal boundaries and goals. On the other hand, i am frequently late (5-10min) to things that don't have a specific start time. In summary, i was very annoyed and pissed off. I'm sure that those emotions run deeper than that immediate situation.
We got entrained, which was balancing and then headed off to the colonic therapist and the center. Dropped off one member of the crew at the colonic and sped off to the center to have to doctor check out my eye.
my drop in appointment consisted of him saying that it would go away and that it was ok that the blood work from our initial visit came back elevated, because that meant i had a lot of liver cells to shed.
PS: This to me is not helpful. I don't want things elevated. I just want them to be normal and healthy.
The reason he said this was all not only ok, but good, was that everything else looks perfect.
So,I've got that going for me.
Speeding back to the center i was on the verge of tears, but held back because of fear of damage to my swollen eye.
My second colonic was way more comfortable than the first and after drinking green juice and liquids for 5 days and having had a colonic 2 days prior, i was astonished by what STILL came out of my body. Seriously. And i have a healthy diet for the most part. i just can't imagine how that much crap (literally) can be stored in there.
I left feeling like a champ, having beaten my high score from the last visit.
My eye had returned to almost normal by the evening when we had more IV's and watched Bride Wars.
My Sweetie is back at home safely and i miss him. Or, i miss Us. It is a testament of strength and commitment to have him stick around for this kind of stuff. Cause we're young. There are a lot of people in this world. People that don't have what i was given.
It's just the facts. I know everyone has things that they go through. There are certain deal breakers that may even seem less important than the things we are willing and happy to put up with. Needless to say, i am so grateful for his continued support and love. It is invaluable.
Today we will get massages, plan things, re-pot plants, and put together a compost bin for my Mom and Doug. oh yeah, and drink copious amount of green juice. humph.
still. i am thankful that i get this choice. x

Treatment started

no need to be flashy. except for my turquoise leisure suit that i wear when possible during this process. We have all concurred, these suits make us feel like a team. They make the green juice more tolerable and add comfort to discomfort, making it all, almost normal.
This is day 4 of the juice feast...dreading more green juice, looking forward to all of the liquid treats. I never knew I'd enjoy miso soup this much. just the paste and hot water. no veggies. i wait for it. cling to it in my mind. knowing that it's available makes one more sip of kale-spinach-celery-cuke-lemon-apple juice a little more bearable. a little.
Yesterday i experienced my first colonic. Comical. Not horrible. Awkward. Informative.
I changed into a gown, got up on the table, turned to my side to welcome 'the speculum', and then turned on my back to start the process. This involves much talk about 'poo' and all things digestive. For your viewing pleasure, there is an educational poster right in front of you, of the colon and what it might look like if it is distorted or sick. This makes me want the return day after day to ward away the chance of this happening to me.
My colonic therapist explains the process and then starts the procedure.
First we fill the lower colon with warm water to relax it. This feels like warmth...with a tube in your ass.
Second we turn up the pressure to do 'fills'. This involves more water and pressure and abdominal massage and the climax of thinking that i am going to poop all over the table.
Apparently this is desired and that is when they decrease the water pressure and allow the 'release'.
At this point i was invited to turn my attention to the 'viewing tube'. Yes folks. the tube that all the poops floats by in. I decided to dive on in and check it out. It was totally gross, but i was slightly removed because it's through a machine and doesn't look connected to me at all. It felt like a video game with points and i wanted to win. The more poop, the more points.
We did more fills and at one point i kind of felt like something was wet where it shouldn't be.
As you can imagine, i was mildly horrified, imagining my own sewage seeping all over the table and my body.
She checked it out and confirmed that the tube had indeed dislodged and we'd have to re-insert.
REALLY?
Luckily, this happened during the filling part and there was only purified water leaking from the tube. THANK GOD.
So, i had the joy of turning over again and welcoming the speculum. What can i say, I've always enjoyed entertaining and consider myself a gracious hostess. She explained that is common and not to feel weird about it. ....OK.
In the end i feel like i got a pretty high score on this round and am somewhat inspired to return. I WILL return mostly because i HAVE to. twice a week. three times is best. but we just don't have time. Aw shucks.
This event is followed by running to the bathroom and 'releasing the rest' or 'shitting your brains out'. At least that's what it feels like. Because you have almost no control over what's happening.
Thankfully most of this process happened while hooked up to the machine. Other members of the team were not so fortunate.

After we were all finished, we returned a la casa and rested and laughed and tried to take our minds off the experience.
Later we were hooked up to multiple IV's as we relaxed in recliners, kombucha in hand, and watched a mediocre chick flick.

So it has begun folks. Really begun.
There has been more rain here in the last 3 days than in the whole of last year. there has also been sun and warmth. This will end soon and it is WAY better than blizzards and ice storms.
today there will be more IV's and other invasive procedures. we will make plans and cookbooks. run errands, assemble the compost bin, and whatever else we discover along the way.

i hope this finds you well and thankful.
xo
i miss my man terribly. or maybe i just appreciate him and look forward to the day when i don't feel like half robot and we can snuggle closely. That day is coming soon. :)but, I'm still sleeping in his t-shirt.

"This will cause you no discomfort.."

We are in Arizona! It's sunny and warm and has at times been relaxing, when remembering that i don't have work, it isn't cold, and soon i won't even have to worry about what to eat. The juice feast will start in 3 days... It's rather overwhelming.
I am wishing that my PICC line was actually causing me no discomfort, but it is. Pretty much all the time. It's not unbearable, it's just uncomfortable. It feels constantly 'there'. It's sore in strange places, uncomfortable to sleep on, my arm feels plain full. I think the thing i miss the most is the feeling of snuggling and connectedness with my Sweetie. Somehow, tubes and plastic make it less fulfilling and i feels exposed when my lumen are peeking out of my sleeve. i liken it having your penis pop through the front of your boxers. I don't have a penis, but i have witnessed this scene countless times.
So, as you can imagine, but have most likely not experienced, i am a bit resentful of the assurance from the medical professionals that 'this will cause me no discomfort' and 'will not impede me in anyway'. Because, it is doing both of those things. I would GREATLY appreciate the reality. What are the options. Tell me the truth so i will not be afraid when the truth happens.
This doesn't mean that i am not at the same time grateful for the opportunity and this inserted device that will make things FAR easier.
I saw the Doctor yesterday. He had been on the Master Cleanse for about 2 weeks. So along with being brilliant, he was also dispersed and prone to tangents. After charmingly escorting him back to task a couple of times, we have a more concrete care plan.
It's not that i don't find his intellect intriguing or his ideas profound, but really, i just want to get to it. I don't want to talk about it and theorize about culture and reason and evolution. I want to get it done. And i promise you, wholeheartedly, that i will be present and in the process, because it is my natural state. In fact, at times i wish for ignorance of the things i have spent years unfolding.
So, after a baseline blood draw and 200cc or half a pint of blood phlebotomized, i am tired and weak and a bit disappointed. Mostly that Seth and I aren't traversing a paradisaical beach in the organic spa magazine we browsed while waiting in line at the Health Food Store, and a little bit because i feel like part robot with these tubes hanging out of my bicep. So, i ate some food, opted out of the walk and social engagements, and am now going to take a nap and recoup.
This is by no means the most important thing ever or even right now, it's just what's happening to me and wanted you to know.

Picc-ture of Health

It's in. My Peripherally Inserted Central Catheter. It's brand name is Power Picc with a lightening bolt denoting the space between the words and perhaps implying that i may or may not become a superhero.

i arrived early like i was asked and waited while a nice young man, who was being trained, entered my info into the system. There was a lot of phone ringing and fluorescent lighting, niceties and badge wearing. Neatly gathered confusion. At least, to my eyes, those that crave beauty within function, and serenity within efficiency.

My over sized chair was ample and would have provided more support had i felt comfortable enough to sit all the way back in it, but with signs about H1N1 all over the place, i kept my hands in tight and tried to limit contact with most everything.

They called back to the CathLab a number of times and reported that they didn't know why there was a delay, but that i could head on back to the 'private' room, where i could wait in comfort with some stranger, one magazine, and plenty of unwashed armrests.

i waited anxiously for around 45 minutes, at which point i walked back to the front desk and asked if they'd heard anything about when i might be going in for my very brief procedure.

Miraculously they had just called and Dan the 75 year old volunteer in a fuchsia button down escorted me all the way. i mean all the way, back into the exam room where i was definitely not supposed to be. They smiled and led me out to the 'waiting area'. Moments later they came and got me.

I found myself surprised at the enormous, machine filled, FREEZING cold room i was undressing in. Assuredly not what i was expecting. The nurses Cathy and Pam were sweet and accommodating, they brought me warmed blankets and a Johnie to change into. I'm deciding it's Cathy with a C instead of Kathy with a K, because there was no name tag and she just looked softer.

I hopped up onto the narrow procedure table and got hooked up to a cuff, a lot of sticky pads with wires, and whatever they put on your finger tip - i think it takes measures your heart rate or temperature. There was beeping and some other technical noises.

One of my clients who is an RN came in and perplexed, asked me what i was doing there. i told her i was a thrill seeker. She laughed and came over with more blankets and quickly started asking me about the holidays and my boyfriend. This was more comforting than i would have thought. Then she brought out the CD folder and asked what I'd like to listen to. I declined Enya, Steely Dan, numerous Eagles, Vivaldi and the Four Seasons ( i used to do chores to that every Sunday), and finally settled on Bob Marley.

Warm, Islandy, and my brother's favorite music.

When i was having an acute anxiety attack during my separation from my ex-husband, my brother relayed to me that when he was feeling anxious he would listen to Bob Marley and he would always feel better. Cute, Sweet, and i still felt like i was going to vomit at the family reunion. I left promptly, excusing myself because i wasn't feeling well. I fled to my car and took some deep breaths. As i turned on the radio, and i never listen to the radio, i was warmly welcomed with Three Little Birds...'Don't worry about a thing, cuz every little thing is gonna be alright...' i think i teared up a bit, smiled, and then sped away. kismet.

So, there I was, ultrasounded, prepped with iodine, covered in papery prep towels, and strangely feeling OK while i sang along to many of reggae's greatest hits.

I had met the Doctor for 2 seconds while he found an accessible vein and now he was back, clad in scrubs and ready for business. He was very nice and relaxed, Ullman. He reminded me strongly of Jeffery Tambor. Also comforting. For some reason we all started talking about cruises, probably the soundtrack, and i felt tugging and more tugging and a huge X-ray machine zoomed over my head and chest, they told me not to breath or move.

I saw my ribs and my heart on the screen and the line that they had just inserted placed perfectly above my ticker. And then, it was over. 45 minutes.

They cleaned me up. Mostly.And i mean mostly. It seems like they prefer to not really clean up all the iodine. Which, frankly, annoys me. Instead of having a lovely purple picc line covered neatly with special dressings and such, i have that plus bright orange staining that looks like spilled cool-aid all over myself. It just wouldn't take much more effort to have it look nice. Maybe I'm being pretentious, but next visit, I'm asking for a thorough cleaning.

Pam and Cathy unstuck all the stickies, helped me up, and sent me away with all of the items i will need to ensure picc line well being.

My Dad and Step mom picked me up and drove me back home. My arm felt and still feels a little sore and strange, but just from the Novocaine wearing off and maybe the snaking of line through my vein.

We returned home and chatted a bit. Then, my landlord dropped by unannounced and frazzled, as they do and as they are. My guests left, i answered some questions and asked some and now all that's left to do is take a nap. Oh, and purchase leg warmers to be sure of fashion compliance and lumen protection.

So, here i go. nap time. enjoy my experiences, there may be pictures to come, so watch out!

x

Coming soon

Here is the start. or the start that is typed.

i continually start and end this story all the time.

i have found it easiest to relate to myself like a journey with many vistas. This is just part of the landscape.

I was transfused with blood containing the Hepatitis C virus as a struggling, premature newborn.

In some ways, I am thankful, since this blood saved my life. In most ways, I'd like to say, "Fuck You", to whomever donated a pint of lifelong worry to my tiny little body. One of my clients, who is also infected with the virus, related his story of woe during a session months back. He remembered selling his blood for drug money numerous times in the late 1970's, as it was the fad amongst down and out addicts. It was while listening to his story that i wondered if perhaps we had more in common than i had originally thought. Like, exactly the same blood. the same bugs. the same eventual story.

I later realized that i was being naive. I don't have to be a victim, although, it is easier at times. i also don't have an Everest of guilt on my shoulders, thinking about who i could have ruined because of my own self-inflicted ruining. He has taken great interest in the progress of my health and it's nice to have an ally.

I was spared the experience of growing up sick and instead i grew up special. "You were worth your weight in gold.", " You survived five cardiac arrests.", "You have strawberry hair and blueberry eyes." "You were voted 'Most Unique' in high school (aka: biggest freak show)".

Granted, i fell asleep on the bus so many times that the school called DHS on my parents, insisting that they were keeping me up at night and not letting me sleep. Or, perhaps i was being attacked constantly inside my body and nobody knew it.

I was always tired, lacked drive for the "supposed to's", got acne that no child should have at 11 years old, and had mysterious joint pain throughout puberty.

I had always wondered about these pieces of my life. How they seemed out of the ordinary, but not SO out of the ordinary that i couldn't pass as normal. I would later get all the information i needed.

It was after a slew of blood tests following my return from a year in South America that we began to learn of the real mastermind behind these symptoms.

I was 19. I was told that i was sick and that i should probably start the protocol used by the mainstream medical world if i wanted to survive. Also, that protocol, could kill me.

I promptly fired my Gastroenterologist and started to get mad.

I felt as fine as i ever had. Certainly not critical. I was a kid and wanted to stay that way. Invincible and Optimistic, free from the cycle of loss that is inevitable and at times, comforting.

I have had many professionals and healers in my path. Medicine Men who drank black coffee, smoked American Spirits, and ate steak ,so rare, i wanted to check for a pulse. Foulmouthed Russian Chiropractors who spoke to spirits in the room while i lay there naked, holding copper rods whose job was the inflict mass genocide on 'the bitches'- more commonly known as cancer, viruses, or bacteria. MD's who listened, and those who did not. ND's who finally got to the bottom of things at financial costs i couldn't bear. and there i was, in the middle. slowly gathering information, getting tired of it, being surprised by it, resenting that i know anything about any of it. Most of the time just wishing i was ignorant. that i could just pretend it didn't exist.

I did that for a while. It was the happiest i've ever been.

It also landed me with blood levels 20 times higher than they are ever supposed to be.

so. i needed a plan.

In 2008, i found a fabulous Naturopath. He has been helpful and generous and human.

When things were good, taking my levels to a mere 10 times the reference range, he seemed unimpressed, wanting me to be better than fair to severe. We took a summer of 3 day work weeks and IV's on Monday mornings and Thursdays. i had track marks, was rather poor, but hopeful. All of this through the donated funds of family, friends, and strangers (thank you).

At the end of the summer, my levels had decreased to 8 times the reference range. Still unimpressed, we tried to think of what else to do. This was clearly not sustainable. Kind of a test really, to see if it would work at all and how well.

I decided to work as much as i could to gain funds. i felt fueled by what i considered phenomenal news. Usually my levels just kept going up or staying the same, HIGH.

So i did just that. and one day, i decided that i wanted to do something big. Something i deserved and resonated with. Through research and coincidence, we have landed here. In this big spot. Ready to set out come January 13th. Off to Arizona, where my Mommy will administer various elixirs into my central line that is going in to my arm on the 11th. i will become friendly with Green Juice and tubes in all sort of places for 3 weeks' time.

I am excited and afraid. I am grateful and astonished. I am doing my best and rising into the life that i have fought, since birth, so hard to keep.

Many thanks to all of you.

My mother, for going above and beyond and defining sacrifice.

My partner, for being positive and supportive and loving me so well.

My friends, for listening and getting things done.

If you choose to follow this, there will be uncensored information, so enter at your own risk.

Be Courageous.Let's do this.

x