Becca's Peace

Introversion. Also, boys.

2011-11-28T20:16:00.000-08:00

They say that absence makes the heart grow fonder. I hope they’re wrong, for my own sake. But that’s all I’ll say on that.
After a season of turning outward, of doing things externally, being more extroverted, the other end of the teeter totter is slowly dropping. My life of extremes is a balance, just over time. Perhaps it’s the colder weather heralding a time of hibernation. All I know is that my desires turn more than ever towards self-reflection, imagination, quiet activities and solitude. I must keep from getting too lazy, though. Physical therapy seems to be getting harder and I weaker, so I will do my best not to neglect my physical training completely in the face of a growing pile to to-be-read books, drawers of creative projects, vocal music, my guitar, meditation, Asian food, and a full queue on Netflix.
I’ve completely busted NaNoWriMo this year (again), but I have written more this month than usual, so that’s something. Though no excuse, the boy-drama in my life this past month has been very stressful. Not used to having to deal with the male race except on a professional (medical) level, re-entering the dating world was an exciting and shocking experience, and still is. Normal girls grow up with male friends near their own age and at some point down the line a few show interest in her as more than a friend. She might date a few guys and she learns through the years something of what to expect or at least a more specific view of what she wants. I didn’t have that, I had books, rats, an empty house and multiple diseases. So here I am, having learned innumerable lessons about life but few about love. But I’m learning and better late than never, I suppose.

Break Please?

2011-08-16T16:03:00.000-07:00

No sleep tonight (again). When do I get a break? When will my body regulate its temperature, have less pain and discomfort, look healthier? When will I get free enough from the fatigue to have a somewhat normal day? When will I wake up without nausea swirling, threatening in my stomach? If God bestows these gifts to most people, why not me? Will this pass or will I, despite all efforts, live and die like this? I feel death in me, waiting, watching for me to lower my defenses and for a physical opportunity. I thought the transplant would mean years more of life, most of it reasonable healthy. Now I’m not so sure. I’m determined to keep my will to live strong and to enjoy the beauty in life. Yet still, in the background, I prepare myself for death. Few will understand this.

Liver Talk

2011-07-27T16:29:00.000-07:00

For some background/proof on how organ recipients learn about their donors through cellular memory.

July 27th, 2011
I’ve been beginning to get to know my liver a lot better lately. I’ve been doing more visualization, Reiki and dialogue with my body so I’m sure that’s widened the channels a bit.
The energy of my liver is definitely female, but then I already knew it was from a female donor. She’s got a lot of sadness and a bit of fear after these first rough experiences in my body. But she, like I, has lots of motivation to just go for it and live. She also tells me that we may not be out of the dark yet, but to not be afraid because things will work out. Not sure if “work out” was meant in a broad, universal sense or specific and personal.
Monday night every time I visualized my liver it seemed to shrink in fear and pain. Nothing I did seemed to help so I meditated and did Reiki on it which felt loving and warm. A few hours ago (Tuesday night) I got a lot of flashes of the donor and her life and suffering. It was like my liver was purging some of its painful past. For the first time I really, truly started to realize that a beautiful person had died and here I was with a physical gift, a sign that they were, in fact gone, yet alive in me. I feel her distinct personality melding with mine in such a way that empowers us both. It’s a very difficult thing to explain, though. It’s not like I have some other person talking to me inside me head.
I’ll try to explain one aspect of it. Sometimes people will talk about parts of their body like they are separate entities. Like, “I’ve been telling my head to stop hurting but it just won’t listen.” If you can delve to the base of the relationship with that area of your body then you will have a small glimmer of the relationship between a person and their new organ, especially if they are expanding that relationship through meditation, visualization, dialogue with the body and other healing methods.
Anybody can have a deeper relationship with their body, but the one between a new organ and the recipient is very special and complex. You have adopted from outside the family and now become mediator so that everyone gets along, is happy and does their jobs. You are the mediator in everything you do for your body from good nutrition to anti-rejection drugs.
I love my new liver and am more grateful for it that can be expressed. Soon I should write to the donor family.

Dessert

2011-07-23T17:55:00.000-07:00

It’s back to checking glucose levels, giving myself insulin shots and worrying over food choices. The Solumedrol (super Prednisone) infusion yesterday really hit me hard. I’ve been feeling icky ever since. Lots of pain, nausea, tiredness but also restlessness from the higher blood pressure and glucose levels.
I got a little bit of exercise today. Mum and I spent an hour or so at Hobby Lobby looking for some art project materials to distract us. I got some watercolor and drawing supplies. I hope Mom makes use of them, too.
That’s about as much as I did for exercise besides a bit of yoga in the morning. My legs have been giving me some bad pain all last night and today and I’ve got a headache. Otherwise I would have spent some time in the exercise room here at the transplant house.
Reading about how Treya handles her diabetes in “Grace and Grit” I am feeling more inspired about managing all this until things go back to normal (blood sugar goes down).
It’s hard because all I want to eat are desserts, onigiri and Spirutein shakes. The shakes are okay, the onigiri in moderation, but, oh, the desserts! I’ve never really liked desserts but steroids have changed all that. It’s been very hard to ignore all my cravings but I want to do everything I can to make myself as healthy as possible.

Summer Shorts

2011-07-21T17:44:00.000-07:00

I’m so glad I’m reading “Grace and Grit” by Ken Wilber and that it came into my life when it did. Treya’s journey in many places mirrors mine or teaches me a lesson that I was trying to figure out.
Today I put on one of the new pairs of shorts I bought. They are around three sizes bigger than what I was wearing last summer and yet they were still too small. My stomach has been more distended the past couple of weeks and then there’s the general swelling and, of course, the Prednisone. I’ve gotten fatter all over, though not heavier on the scale. For the first time in years I have arm flab. Part of me is glad about this after all the time spent worrying about being too skinny and now eating enough. The other part of me gets scared of staying this size or getting fatter. Yes, I’m at a healthy weight and my stomach will be swollen for awhile yet and I’m on Prednisone. I don’t like how I look at this size and as for how others think of my looks…well, I just want people to see me at what I judge to be my best. Or at least acceptable. Really, I just want to be comfortable in my own skin. I also want to present myself as someone who practices what they preach (i.e. a healthy lifestyle for mind, body and spirit). I want to overcome this fear and leas a healthy lifestyle out of honesty, not fear.

Rochester Flowers

2011-07-20T17:42:00.000-07:00

The flowers in Rochester are in full bloom. There are different flowers than the ones I see each summer in Lincoln. I’m rather surprised at the Rochester flowers’ hardiness. We’ve had days of hot, humid weather. The kind where even the outdoorsy people are seeking the solace of dark, air-conditioned rooms. The flowers, however, seem unaffected.
Mom and I went to the Mall of America today. I was thinking that the distraction and exercise would do me good since I’ve basically been lying in bed the last couple of days with the overwhelming fatigue, nausea, aches, chills and sweats. But, of course, I got caught up in things at the mall and ended up so exhausted (and hot!) that I gave myself a migraine, plus extra pain. I seriously need to figure out how to pace myself. I might have done a bit better if I had gotten in a good meditation this morning…
Also, I’m supposed to only be taking two doses of Imitrex a week. Period. No ifs, ands or buts. And since my neurology appointment I’ve had two doses. I don’t have the rain to blame anymore so I have to break the chain, otherwise I’ll keep getting daily migraines because my brain expects the drug.
Last night I was thinking about how central physical pain has been in my life and how I still have fears and expectations about it. As in, expecting that if I have to sit in the sun all day I’ll get a migraine. And then that thought or expectation generates fear of the pain to come. Some of my expectations are true, some can probably be overcome. It will take a lot of self-discipline, though. Meditation helps, too because then I learn to disassociate from the pain. I notice it, but I don’t have to be identified with it. This is a crucial journey for me as pain has been a major factor in my life since I was little and pain will most likely continue to be a part of my life until I leave this body.
Tomorrow are my last appointments unless the doctor decides to do another biopsy. This depends on how yesterday’s blood work looks. I hope we can go home, at least for awhile. I miss everyone and everything, Mom even more and I hope we can go for her sake. Also for Ginny who is very lonely. I got her some things at the mall, though they can’t really soothe my guilt over causing so much stress these past five weeks. Daily I must learn to forgive myself for things I cannot help.
I’ve been thinking a lot about what I should do with my life now, provided I become relatively healthy. It stresses me out because there are so many different things I want to pursue but, not having experienced them fully out in the “real world” I don’t know what would be the perfect fit. I know, then, that it’s all in God’s hands and I just need to follow my heart day by day. The right opportunities will be presented to me when I am ready.
But then think of all the projects I already have going or need to get done! Day by day, I tell myself. Life is very different now and it will continue to change. I must be gentle with myself in this time of change and adjustment. Day by day, moment by moment.

Books books books

2011-07-05T17:40:00.000-07:00

You would think I’d know better than to overload myself with reading expectations, especially when I’m doing the reading for stress relief or for learning to care for myself better. I become so overwhelmed by what I “should” be reading that I start too many books at a time and can’t give anything the attention it deserves or that I want to give it. Thus, days can go by without me getting any substantial reading done and I feel empty and frustrated.
So, I am affirming that I will keep it simple. Yes, there are a lot of wonderful books in the world that I would undoubtedly benefit from but I will go through them one or two at a time and trust that Goddess will bring the right books into my life when it’s the right time for me to read them. “When the student is ready the teacher will appear.”

Mothering The Body

2011-04-23T19:40:00.000-07:00

“In a way, mothering is the task before us all-to nurture ourselves while vigilantly nudging ourselves forward. This requires a balance between self-discipline and compassion.”-Natalya Podgorny, Editor’s Note, Yoga International Magazine, Spring 2011.

I know this concept well. Not because anyone taught it to me but because it is a lesson taught by human experience. Those who learn and apply this concept experience a balance in their life between rest and ambition (or whatever term you choose to express the healthy stress in your life). As someone with chronic pain and an incurable disease this concept applies to my life most often in a physical, illustrative sense.

I must nurture, care and listen to my body, treating it with love and respect. Sometimes this means forcing myself to rest for an hour in the middle of doing housework and sometimes it means taking it easy for a whole day. The self-discipline side of things come both when I “force” myself to take a break and nurture my body and also when I tell myself I’ve been lying down long enough and I should go outside and take a walk (I know I’ll feel better for it).

This balance comes from a healthy relationship with our bodies and our minds. The mind-body link must be established through listening to our body’s signals and learning from past experiences. The practice of meditation comes in handy here when we need to slow down and let our body tell us what the next step should be. For instance, I might tune into my body which is saying, ‘remember how good a nice stretch feels in the morning?’ and my mother-self says, ‘yes, let’s greet the day with spirit and movement’ but my child-self says, ‘nah, let’s just sit in bed until we feel more inspired’. Here is the mother nudging her chick to the edge of the branch to fly. The chick’s spirit wants to fly, her body wants to fly, yet her mother still has to give her a nudge in the right direction.

Sometimes I fall off the bandwagon for a day and I realize at the end of it that I really wasn’t listening to my body and spirit. Maybe I ran off with all sorts of things to get done when I should have taken more breaks or maybe I stayed in bed all day when I should have gotten in some more activity. In pain rehab at Mayo Clinic we called this ‘moderation and modification’. Everything in moderation-activity in moderation and rest in moderation. Modification means fitting your moderation to meet your body’s individual needs, which brings me back to the practice of tuning in and listening to the body. Everyone’s body is different and they each have their own individual needs. Only you know what is truly healthy for you and you can only find that out by experience and listening to your body.

Nurture and love your body by mothering it as you would a young child- with compassionate discipline. As I continue to practice this I know that, even though my body has its share of troubles, I am giving it the best chance I can to overcome them.

Poetry

2011-04-06T22:40:00.000-07:00

Well, I tried:

Not a Poet And I Know It
by Becca

Today there was sun
and chammomile tea
I got out of my room
to be seen and to see.

"Comin' out of my cage
and I've been doin' just fine"
is the lyric I think,
so those words aren't mine.

Not very good at this poetry lark,
but thought I would try
and at least make a mark.

I turned on the light
to write this all down.
Adjective, verb,
conjunction and noun

Getting this far,
I think it's apparent
why poems are something
I usually dare't.

Is that even a word?
I think that I'll stop
before I get caught
by the poetry cop.

The Visit
by Becca

No one ever visits
the sick anymore.
Why am I the one going
to other people's door?

This isn't a game,
it's not trick or treat.
Life isn't so tidy,
or simple, or neat.

All alone by myself,
day after day.
I would love to just see you.
Please, won't you stay?

I don't really think
I'm asking that much;
not making excuses,
not using a crutch

Almost five years
is a long time to wait.
So you'll find I'm still here,
it's never too late

To just drop by
for a quick spot of yea
to help pass the time,
together with me.

'Neil', A Song

2011-03-19T12:53:00.000-07:00

I know, I'm not very good and these videos are certainly not the picture of musical perfection. But it was really just for fun.

12th Liverversary

2011-03-17T02:20:00.000-07:00

March 17th, 2011

Today is my twelfth year with this liver. I was transplanted on St. Patrick’s Day twelve years ago. I remember it well. It was 1999 and my mom, sister and I were living at my Gramma’s house. My parents had just separated and my sister and I were going to my mom’s old school in her hometown of Lincoln, Nebraska. I was currently sleeping in the basement on the fold-out couch. I heard a small noise and was instantly wide-awake. I don’t think I was sleeping so well those days due to the disease and stress of the move. I sat up in bed and grabbed onto a frog stuffed animal I had been sleeping with. I thought I heard the phone ring and looked at the clock: Six AM. Who would be calling so early? As I waited to hear another sound that might clue me into what was going on I heard my mom’s voice very faintly. She sounded like she was talking to someone. I quickly put two and two together and my heart skipped a beat. Hardly able to believe it I made my way to the stairs at the top of which was the phone and my mom. I climbed quietly, slowly and unbelievingly up the stairs on all fours, stuffed frog still in hand. My mom finished her conversation on the phone and, after hearing it I was sure. I climbed the rest of the way up the stairs at the top of which my mom’s nightgowned form appeared.

“My liver is here, isn’t it?” I said.

Mom, who had a strange look on her face, replied, “That’s right. Get dressed quickly and get your stuff. We need to get to the airport.”

Soon after we were at a place by the airport called Duncan Aviation. There was a volunteer pilot there getting his jet ready to take us to Rochester, Minnesota where the Mayo Clinic was. An hour’s flight later we were driven by a charter car to the hospital. Preparation in the PICU (Pediatric Intensive Care Unit) took a couple hours. Washing in a special body wash, getting an IV started, being hooked up to all the machines and other such medical preps.

I remember being really excited and happy. Even after saying goodbye to my tearful mother and being taken to the ER I was in a wonderland of possibility. I was getting a new liver! Think of how much better my life was going to be! Not to mention all the stories I could tell my friends at school.

In the OR my eyes feasted on the biggest spread of medical equipment I had ever seen in my seven years of medical tests. A nurse was sorting huge buckets full of clamps. “It looks like she’s sorting silverware!” I said excitedly and expressed my frustration that I couldn’t stay awake and watch the whole operation. But all too soon I was falling under the powers of the anesthesia.

After only a week recovering in the hospital I was set free to live the rest of my life. But three years later the PSC came back and so here I am today. That wonderful liver that was such a miracle twelve years ago has been turned against me, although it still fights as best it can. This liver has been with me longer than any other and we have bonded very well. If you’ve never had an organ transplant you can’t understand the special relationship that forms between the organ and the recipient. I can’t quite explain it other than to say that there is constant communication between the two entities. Not only that but you acquire a few new memories that are not yours but that of the organ’s former owner. Even things like hair and eye color change. I got my wavy hair and green eyes after receiving this liver.

My mom never contacted the donor family of this liver and I have enquired of my social working about doing this myself. I was hesitant at first because this liver isn’t exactly being a ‘gift of life’ at the moment. But I don’t think I’ll mention that in my letter. I just want to try and express the gratitude I have towards that family for making the decision of organ donation for their child (I received an entire pediatric liver meaning that the recipient was probably younger and smaller than I was at the time). It’s really impossible to truly express thanks to someone for giving you a second chance at life when there were no other options but the point is that contact is made and this often brings the family closure.

I wish you all a happy St. Patrick’s Day. Please don’t destroy your liver with drinking on this day. Instead, raise your glass of appropriate beverage and say a toast to life. Today I celebrate my life and the amazing privilege I was given to continue living it when my body had almost given up. Life may be hard for me these days but it is, wholly and undoubltably life. And it’s beautiful.

Marginalia

2011-02-26T10:59:00.000-08:00

When I was a young teen and starting to read more voraciously than ever I ran into a problem. I had precious little money to spend on books and it certainly wasn't enough to keep up with my literary appetite.

My sister and our close friend Jessie often read the same books at the same time. There was no money in either family to buy books in threes and so what we did was see who would pay for just one copy. As our days were spent mostly in each other's company we were able to share that one book, passing it between the three of us.

It was then that we discovered a clever way of experiencing the book together. We would, each in turn, write in the margins of said book or make doodles. Sometimes the notes merely pointed out what we found funny, profound or satisfyingly romantic. Other times the notes took on a philosophical tone. As the book was passed along we would each write our own marginalia and comment on what was previously written.

The books holding these notes became treasures, personalized by our thoughts, written there as neighbors to the original text. Often we would re-read these books months or years later and marvel at how we had changed or laugh at our doodles and jokes. We began to date the marginalia as we started to put in new notes. Through this process these books became more precious than ever.

Now that me, my sister and Jessie have grown and have money to buy our own books the marginalia has come to a stop. I will sometimes write a little note next to a text but usually only as a reminder to myself about how I interpreted it.

When I saw this article, though, I decided that my books needed far more marking up. Who knew that others had discovered the same mysterious way of communicating with other readers that my sister, Jessie and I had? A way of communicating that has a magic that Facebook, Twitter or email can ever replace.

Though not quite the same, I was happy to discover that my Kindle ebook reader had a feature for highlighting and making notes on passages and that these could be shared with other Kindle users.

As long as there are creative readers out there who have opinions about what they are reading I doubt that the phenomenon of marginalia will never die.

Last Two Days At Mayo

2011-02-22T09:39:00.001-08:00

Health Update

I left off with Wednesday so I’ll pick up on

February 17th, 2011 Thursday

I didn’t have any appointments this day so I got in contact with Dean and his sister Kathleen to see if they wanted to get together. We did a little Mayo touring. We went to the patient education center and got free DVDs and booklets and saw the clear, plastic man with the light-up insides. He seriously needs some pants. The fact that this is a rather old piece of educational equipment and therefore yellowing in places does not help matters.

We also went to a meditation room with a labyrinth, prayer wall and a small, circular room with prayer rugs and copied of the Quar’an in it. I completed the labyrith and waited for David Bowie to show up in stripped leggings. He didn’t show. Okay, sorry, geek joke, I know. If you have no idea what I’m talking about just Google “Labyrinth, David Bowie”.

Next it was on to some shopping. We ate lunch and made our way through subway and skyway to the amazing Barnes & Noble (the one that’s in the old theatre). I rather overloaded Dean with

dietary information about liver disease.

Soon my friend from PRC, Jess, showed up. I said goodbye to Dean and Kathleen and continued to putz around Barnes only with Jess this time. We were both exhausted so we went back to my hotel room and acted as lazy as possible, ending our evening with a delivered pizza and TV.

Friday:

Friday morning I got a call from Lynn, my transplant nurse coordinator. She said that the results from my MRI were back and that I had Bursitis. I had no idea what this was other than Lynn telling me I should get cortisone shots in or around the joints.

Mayo’s website says this:

Bursitis is a painful condition that affects the small fluid-filled pads — called bursae — that act as cushions among your bones and the tendons and muscles near your joints. Bursitis occurs when a bursa becomes inflamed.
http://www.mayoclinic.com/health/bursitis/DS00032

That explained all the deep-bone pain then. I’m supposed to rest my legs and arms but still get some movement going on. I read that the movement shouldn’t be repetitive, though.

Soon after that phone call my friend Sage came to pick me up as I checked out of the hotel. Then we were on the road to famous author Neil Gaiman’s house! That’s a whole story in and of itself which I will post on my blog soon. Neil was so totally sweet and charming and hospitable. Looking back on it, it all seems like an amazing dream and then I remind myself that yes, it was real! Sage was awesome for driving to pick me up, then taking me to Neil’s and from there to the airport. I think she rather had fun.

We left Neil’s house in time to make my 3:30 flight, which would have worked out if my flight were scheduled to leave at 3:30. I had misread my ticket and the flight actually left at 3:05. Lucky for me it was delayed and they got me through security quickly and said to take one of those golf carts to the terminal. After security (I wasn’t able to check my bag so I would be boarding with it riding plane side) I was told the golf carts only came every 5 to 10 minutes and I was better off just walking as quickly as I could to the terminal. But with a huge backpack, a laptop case and a huge heavy bag that only went on wheels on the rare occasion that it felt like it, my bursitis kicked in big time. It didn’t help that I got my laptop bag stuck on the edge of one of those moving sidewalks. I’m used all my leg strength to walk back to get it un-caught but it was no good. Some guy came to my rescue and I could tell he was trying not to laugh at what was obviously a hilarious scene. I was not in mood to laugh. At the end of what I was sure would be my death march I came to my terminal. The bird had flown.

A nice lady switched my flight for me, got me a golf cart to take me to get food and wished me luck with my transplant business (I’m yellow enough now that people either avoid me like the plague or ask if I’m okay).

After I had eaten a bit of expensive, low-quality chinese food Jess came to pick me up. I basically lay in a bed at her house and tried to recover my legs as much as possible. Then Jess generously took my back to the airport for my 10 PM flight. It wasn’t long before I was home and sacked out. Because really, who cares that I had to go through all that crap at the airport when I’m gotten to meet Neil Gaiman!?

P.S. To see pictures from my Mayo trip go here and look at the last 8 photos.

Mayo Days 1 & 2

2011-02-16T21:29:00.000-08:00

Health Update
February 16th, 2011

Tuesday:

Had abdomminal and vaginal ultrasound. It hurt less that I had anticipated and soon I was dozing. Then it was off for a blood test and to give a urine sample. Too tired and sore to walk back to my hotel room, I napped in the sun on a couch in the Gonda building where one of the walls is a big window. Also, I had a yogurt parfait and some hot chocolate which I, of course, dribbled on my Super Liver PSC Partners shirt.

Next I saw Lynn, my wonderful transplant nurse coordinator. I gave her my first attempt at lucky star hoop earrings and an origami string (she picked stars made out of pink paper with hearts and musical notes printed on it). I was really not feeling well and just sort of moaned to her. Not too long after I saw my liver doctor, Dr. Tahlwalker. He ordered MRIs of my legs and gave me some Tramadol for the pain until we could figure out what was going on. We also discussed presenting my case before the UNOS board to see if my MELD score could be brought up a few points. He is going to talk to my surgeon, Dr. Rosen about it and he sounded pretty confident that this could be done. With my bilirubin so high, my symptoms being what they are and my high ammonia level (which is hard for me to control because I have a hard time the Lactulose) I probably have a pretty standard case. Dr. Rosen came in to say hi to me and really just said, “You look very green.”

I gave a good amount of origami strings to the ladies and gents at the desks on the transplant clinic floor and told them to give them to people who were having a particularly hard time. But really they could go to anybody. I new creation of mine is also hanging with the other origami at the check-in desk.

Then it was time to chill and eat delivered Japanese food. The Tramadol Dr. Tahlwalker had given me was helping my pain so I had a much easier evening than I would have had without it. Tramadol is not a narcotic but is very close to one. I take as small a dose as possible as little as possible. It won’t get in the way of my standing on the transplant list. I mean, it was okay-ed by my Mayo transplant doctor, so all is well.

Wednesday:

First off I saw the social worker. Got info to contact the donor family of my current liver. Basically I can write a letter just telling them how much I appreciate their sacrifice/gift and tell them how it’s helped me live a fuller life. The letter is then sent through an agency so it’s all very anonymous. The donor family has the option of contacting me back but I am told this doesn’t happen often.

Had an MRI of my legs which I, of course, slept through. Saw the gynecologist about my ultrasound but everything looks good, so that’s a relief.

During lunch I met another person on the liver transplant list. I sat with him and his sister and we swapped stories and medial tips. We shared contact information and got some pictures together. Hopefully I can see them tomorrow since it’s a day off for me.

So those are the highlights. It’s been very busy and I’m exhausted.

Love and Light,
Becca

Health Update

2011-02-15T18:44:00.000-08:00

Dear Friends and Family,

As Facebook becomes more popular I have been using it to post little updates about myself (what I’m doing, my health, etc.) to keep all of you informed. However, I know a few of you are not on Facebook so I will continue with my health updates as much as possible. I’m not always forthcoming about what is going on with me on Facebook, anyway. Instead I usually just ask for extra prayers and good thoughts when I am having a rough time.

I am writing from Rochester, Minnesota this evening. I am here for my 3-month check-up (both UNMC and Mayo want to see me every 3 months while I am on the transplant list). I am hoping to have some things cleared up and made better while I am here.

Pain control has become a bigger issue as I have more abdominal and liver pain. It is hard for me to sit up for more than a few hours, sometimes less. And lying down is rather uncomfortable as well. I’ve also had increasing pain in my joints, especially the knees and shoulders. Nausea is a bigger issue as well. I’ve also been having very bad chills (although no fever). Portal hypertension has been pretty well controlled but it’s still an issue sometimes. Heptaic Encephalopathy has been much worse as of late with my last ammonia level being 160! Note: Normal ammonia is 24-40.

My MELD score was at a 23 a couple months ago but it’s gone down to 20 (lower on the list so to speak) as I’ve become sicker. My bilirubin is higher, however, so jaundice, itching, aches and digestion are worse. While bilirubin factors into the MELD score it does not count as high as, say, the INR (which has gotten a tiny bit better) and Creatinine (which has mostly stayed the same).

I’m going to discuss with my doctors the possibility of having my case presented before the UNOS board to see if my score can’t be brought up. I’m not sure how that will go over as I’m not currently hospitalized or suffering from any major infections. Mostly I just want to see if there’s anything to be found out that can help me be in less pain and live a fuller life while waiting for a transplant.

Tomorrow I start appointments. I will do my best to update you all along the way.

Thank you to all of you for lending your support and prayers through this time!

Much love,

Becca

Health Update

2010-12-07T07:35:00.000-08:00

November 29th, 2010

Health Update

Okay, I’m going to try to make this as simple and concise as possible but a lot has been going on and it will take some explaining. So just bear with me here.

Life has continued to be narcotic-free. I am not 4 months clean! I go to NA (Narcotics Anonymous) meetings, have an awesome sponsor, and see a chemical dependency councilor.

My PSC has been getting worse, however…but this also means a higher MELD score (last count it was a 21). In the past couple of weeks I’ve been starting to experience PSC symptoms more seriously. Fatigue, itching, loss of concentration, distended belly, liver pain and more active Crohn’s have been the most prevalent for me. The fatigue has got to be one of the worst. It seems like such a understatement to call it fatigue because of how completely debilitating it can often be. It’s difficult to explain to someone who has never experienced it. I guess I’d say it feels a little like being very, very anemic.

Last Saturday my mom drove me up to Rochester where I was scheduled to finish my transplant evaluation. Mom drove back to Lincoln on Sunday because she had to be at work. I was settled in a nice hotel room with a sort of kitchenette, sofa bed, queen bed and, of course, free wireless internet. J

The Mayo buildings are all linked together by a subway and my hotel is hooked up to that subway so I didn’t need to have a car or walk outside in the bitter Minnesota cold. I have come to really appreciate this. I thought it was cold in Nebraska when I left…it’s so much worse here. I’ve already had to buy a new fleece hoodie at the Mayo store to make up for my lack of really warm clothing.

I had tests all during the week. The good news: my lungs, kidneys and teeth all look great. My heart looks okay, too, but as I’m having some artery problems in my liver it’s rather complicated.

My liver rather shocked everyone. It’s very, very big. Judging by how my weight has gone up I’d say my liver weighs somewhere in the 10 lbs area. This isn’t uncommon with my disease, though. With the cirrhosis the liver gets bigger and heavier and I’ve heard of some people having their liver weighed post-transplant and it’s amazing how heavy they get. You can actually see the outline of my liver through my skin. I still have a little bit of ascites so combined with the huge liver I’m looking rather pregnant. I’ve started shopping in the maternity section. No joke.

The pressure of the liver on all my other organs makes it hard for me to breathe sometimes and makes my stomach cramp. I have very little room for food in my stomach so I try to just snack throughout the day. Like a pregnant woman I also have to sit in a recliner a lot to ease the internal pressure. It’s hard to sit up and carry this liver around all day!

That’s how it affects my day to day life. Scientifically, what is going on is that as the PSC infiltrates my liver deeper and further, the bile ducts close up and eventually that area of the liver becomes pure scar tissue (cirrhosis). That part of the liver is dead. According to the docs at Mayo my liver is probably more than half dead (they can’t know for sure without actually opening me up and looking at the liver). One way they know this is by a test they did to look at my heart. I have what is called portal hypertension.

Okay, ready for an anatomy lesson? Open the picture attachment on this email. That’s a liver. See the sort of lavender colored tube with an arrow pointing to it that says “Portal Vein”? The portal vein delivers blood into the liver to be detoxified. However, when there is cirrhosis it meets a dead end because scar tissue is hard, heavy and, well, dead. So now the blood in the portal vein backs up and flows back into the heart. This can cause some bad stuff to happen. I believe the most common thing to happen is for that blood to flow into the esophagus and burst or create varices.

Maybe some of you remember that when I was around 4 my esophageal varices burst and I threw up gallons on blood. They haven’t burst since then but the portal hypertension is putting me at a higher risk. I can sometimes feel this weird sensation in my chest and heart that I know is the portal hypertension. It usually passes within a few minutes, though. Practicing meditation and deep breathing really helps with this because it lowers your heart rate and blood pressure. I also take a medication to keep my blood pressure low.

Here’s a good link that will give a little more info about cirrhosis and portal hypertension. http://familydoctor.org/online/famdocen/home/articles/188.printerview.html

I talked to one of the transplant surgeons at Mayo and I asked him about living donation. He said that if I wanted to do it it would have to be done now because I was quickly becoming too sick for it to be an option. However, he said he didn’t recommend living donation for me because one, I was already pretty sick and two, this third transplant is already very risky. By using only half a liver they wouldn’t have all the hook-ups for the plumbing (remember that picture? All that stuff and more has to be hooked up in the right places in the new liver). Most of the major bile ducts and arteries running into my liver are already in pretty bad shape. The surgeon said they would be taking bits of artery from the deceased donor to put into me to replace my old, shabby equipment. What a great recycling program!

In talking with the surgeon I learned that my chances at making it to transplant are slimmer than I originally thought. It’s great to get to know more people with my disease and compare notes and experiences with them but the other side to that is that I often hear about PSCers who die before getting a transplant. There’s still a lot of hope, though. I wouldn’t be on the transplant list if I and my doctors didn’t think there was a good chance of me getting through this. Currently my MELD score is a 21. If I can just get sick enough for it to get up to 25 I’ll be on easy street for getting a liver

Also, new studies are being done all the time to look into PSC. It’s one of the most mysterious diseases and since it’s rare there is very little funding for studies. Someday, however, we all hope that a cure can be found. A liver transplant is only a treatment, not a cure (obviously, since I’m waiting for my third transplant because of PSC). I know I bully people all the time about this but please look into doing something to raise and/or contribute money to help find a cure. Even if you can just spread the word about PSC that will help. There needs to be more awareness. Visit http://www.pscpartners.com and do all your internet searching through goodsearch.com with PSC Partners as your charity and do your internet shopping though goodshop.com with the same charity.

After many appointments at Mayo I was finally put on the transplant list there! I am now double listed, i.e. on both UNMC’s list and Mayo’s. This covers pretty much all the states in the Midwest. I could get a liver from any of them. That liver would then be delivered to whatever either Mayo or UNMC depending on location. Mayo gets its livers from Michigan, North and South Dakota. Nebraska gets its livers from Kansas, Iowa, Wisconsin and…um, I think that’s it. I can’t remember. But still, that’s a pretty broad range. It definitely ups my chances of getting a liver quickly.

So, all in all, life has had to take a bit of a slower pace and I’ve had to put aside a few things that I’m just not up to doing anymore but I’m keeping a positive outlook and trying to see the blessings and joy in each day. I’m doing my best to get in the very best shape I can for transplant. Taking care of myself is a full-time job and can feel selfish and really boring sometimes but I hope that soon it will all pay off.

I apologize to those I haven’t been keeping in touch with very well. I really appreciate the emails and whatnot. Just be patient with me. You have to understand that some days it’s all I can do to just shower and make a few phone calls. I swear I’m not ignoring you!

A big hug to all of you for supporting me (and my family) during this time and being so understanding. Ya’ll are heros in my book and you brighten up my life!

<3 Becca

Some PSC Info

2010-11-03T15:44:00.000-07:00

Doing some online gift shopping and hoping to support a great cause? Well look no further than http://www.pscpartners.org/shop Funds from your purchaces go to further research in finding a cure for PSC (the liver disease I have). Having funds for this research is vital as the only known treatment for PSC is a liver transplant; and even that is often temporary (just look at me!).

Also, on the same note, I'd like to share a link to an article about a friend of mine who suffers from PSC. It's a wonderful bit that gives a good glimpse into what it's like to live with the disease and what the disease does. I hope everyone I know reads this. Click here.

Faerie Faith

2010-10-22T11:16:00.000-07:00

For those of you who can not for the life of them wrap their heads around my belief in Faerie, I offer the following videos:

What's Been Happening

2010-10-20T13:27:00.000-07:00

2:00 PM
My desk

So I made it through. I’m alive and the better for it.

What a crazy last five days. Here it is in an acorn:

Friday: Potassium is down despite Herculean efforts on my and the doctors’ parts. So it’s either 12 extra pills to swallow or 1 shot of liquid potassium. I’m all for the liquid so I pour some in a little measuring cup made for cough syrup and down it like a shot. Bad idea. It tasted like dead…things. I was already a bit on the nauseous side and the potassium concoction did not help (learned today that potassium supplements can upset the stomach. Why no one told me this before I don’t know.). I yelled a bit, jumped around, drank a lot of water and then made a sacrifice to the porcelain prince (read: I threw up).

After my performance I met Aprille for lunch (don’t worry, I didn’t eat anything). This cheered me up considerably, especially as Aprille had some new anecdotes about our friends at which we laughed and flattered ourselves that we would never be as brainless as them.

Back at home I puttered around being completely useless and nauseous. Finally my Aunt Nancy and Uncle Joe arrived from Kentucky and we got down to business. The first order of the day was tea time. Later we sauntered around Sunken Garden and then had dinner at The Cup (pronounced ‘tay cup’) and were joined by my sister Ginny/Natalie and her boyfriend Doug.

Later I went to a great NA (Narcotics Anonymous) meeting and I asked my friend Lori to be my sponsor to which she said yes. I am very excited about this. Lori is awesome. She tells it like it is. Also, she wears gemstone jewelry and is Buddhist so I think we’ll get along together splendidly.

Saturday:

Shopping with my sister and Aunt Nancy=being spoiled. She insists that it is an aunts sacred duty to spoil her nieces but it was nevertheless a bit of a culture shock for my sister and I to just toss whatever we pleased onto the register. My Aunt Nancy is a very gracious woman but also a bully. Not that I’m one to talk being a hopeless bully myself. I comfort myself by saying, “Ah, it is only because I’m the oldest child” but I know it has more to do with me just wanting to be in control so I can boss my equals around.

The Huskers played a terrible game and my poor Uncle Joe, sitting somewhere on the sidelines with other alumni had to witness it up close. Still, I think he had a good time meeting old friends and acquaintances.

Sunday:

After work we all (Gramma, Mom, Ginny, Doug, Me, Aunt Nancy and Uncle Joe) met at Green Gataeu for a lovely brunch. When we were walking back to our cars afterwards I found a pigeon that had been hit and stunned in the middle of the road. Vet Tech mode took over and I brought him over to the sidewalk to assess his injuries. He was not too badly hurt but the shock eventually got to him and he died. I stayed with him while calling animal control first to get help and then to inform them of his death. He was a beautiful bird and full of innocence. I felt blessed to have shared that encounter but sad that he had to die in such a state of stress. The spiral of life was apparent to me and I thought of this time of year when things are dying. And yet, with death new seeds are sown and the circle continues. I felt the Goddess in that circle and in the symbolic meaning of this season very strongly then.

There was more shopping but I was quickly wearing down because of all the non-stop excitement of the last few days. My body was telling me that enough was enough.

Monday:

Sat around and got more and more nauseous. By evening I could stomach nothing and longed for some proper nausea med but the Specialty Clinic was closed so I tried my best with aromatherapy, ginger tea and acupressure bracelets. Nevertheless, I was up all night. I was sorely tried.

Tuesday:

In the wee hours of the morning I could throw up no more and so mom took me to the ER. My port gave the nurses a hell of a time but eventually all was settled andthe nausea med was administered. It helped but not quite enough. Still, by that point I wanted out of the noisy, bright and uncomfortable ER and was able to leave after waiting an entire hour to be discharged.

The scary part was when the nurse asked me if I needed anything for pain. I had forgotten to show the ER doctor my letter saying that they should not give me any type of pain medicine. It would have been so easy to say that yes, I should love some pain med. But what good would it have done me? I would have become even more nauseous and been all doped up with no mind of my own; and let me tell you I am so done with that. Since I wasn’t in any pain it was easy to say no. I am very afraid of narcotics now, which is a good thing, but if I am in a certain mood and in a lot of pain…well, those drugs start to look pretty good. Still, the experience of being asked so matter-of-factly if I wanted some drugs was shaking to me and later that day when I was napping the experience came back to haunt me more than a couple times.

I continued to be very sick throughout the day and in the late afternoon was taken to the hospital to have some more nausea medicine. I think it would have helped if I hadn’t had to ride in a car there and then back home. However, that night I started feeling better. I took it easy with the food just in case but, mercy of mercies, I was able to sleep through the night.

Wednesday/Today:

I woke up with a migraine but I brushed that off as I was so happy that my stomach was finally better. I went to my doctors appointment and got some things going to try and help but I’m sure the worst is over.

I celebrated by filling my new prescriptions and buying some yummy and easily digestible food at Open Harvest.

Finally I can get back to my life.

A Productive Day

2010-10-11T20:30:00.000-07:00

9:58 PM
Aprille’s dining room

Today was productive. I got up, showered, dressed and took the meds before heading off to an appointment that didn’t exist. Well, it does, just not until next Monday. Got the week wrong. Having proven the time-space continuum theory I sent out a text message to three free-during-the-day friends that I would much appreciate a rat wrangler as I made a go at cleaning said rats cages. Gina arrived at my house shortly after I did and tried to mix her rat wrangling with some very stitch count intensive knitting. I could have told her that her multitasking was fruitless in the face of three to four rats all vying for her attention (and when not getting it resorting to chewing the bedding or knocking random objects off the table). Somehow it all worked out and when Gina had to leave she was escorted to the door by a very friendly, if not distracted, Jack. It may be argued that Jack had really come out to try and steal food from Gramma and Mom who were enjoying leftovers at the time, but I really think that was just a sideline perk to the whole escorting business.

Tried out the new food I’m supposed to be running a trial on with the rats. They were not pleased about it. After some tentative nibbles on the trial product they all came to me with sad, disappointed faces. I’m ashamed to admit that didn’t have the heart to deny them so…I may have put some yummy seed mix in there for them. I could have sworn I heard a choir singing the ‘Hallelujah’ chorus when they discovered it and had their first rapturous bites. “This never happened,” I told them.

I got some other things done around the house as well but they are much too boring to be written about. So was my blood test. The results of the test, however, earned me an after-hours concerned phone call from my doctor and much frustration on my part for not being able to bring up my potassium by any significant amount even after loyal pill gulping and a high-potassium Boost shake right before the blood test.

After all that it was time for an escape so I kidnapped Aprille from work and we went to Barnes and Noble where I bought her a drink to make up for the particularly cruel way in which I had kidnapped her. By the way, only part of that last sentence is true. You be the detective.

Aprille and I talked about spirituality which is a hot topic among the friends right now. I’m the only pagan in the group so I have a different take on a lot of things. Sometimes people get it, sometimes they don’t. It doesn’t really matter to me as long as they don’t burn me at the stake.

I could write more on that subject, but it’s late, I’m tired and I’ve been talking about it all evening so I’m thinking I’ll just leave it there for now. Hopefully I’ll be more inspired later.

Lunar Mix-Up

2010-09-22T10:59:00.000-07:00

The Goddess energy is super strong today. I'm feeling it, experiencing it. Now, technically, the full moon is tomorrow night. At least that's what my lunar calendar says. However, according to my Google widget the moon is full right now. Since I'm feeling its energy so strongly I'm gonna go with Google on this one. So tonight is lunar goddess fun night. I better rest up....

Zzzzzzz

Back From A Blog Haitus??

2010-08-31T17:38:00.000-07:00

It's been a long time. But here I am, alive, kicking and enjoying life. A lot has happened since my last blog (posted a little under a year ago) and you all probably know all about it. I plan to post the missing health updates and journals I want to make public. They will be posted as if they were posted on the day they were originally written, so eventually there will be blogs between this one and the "thanksgiving" one.

I'm a Bitch

2010-08-25T13:44:00.000-07:00

I have a really hard time understanding people who don’t want/like to be single. Like Miss Read and various other characters, I hold my single life dear. Who would want to give up that freedom? Not that I won’t date or never get married. I’m sure there are guys out there who will enrich my life and let me keep my free spirit. The point is, being single is great fun so please people, take some time and enjoy it.
Also, if the guy was a jerk and broke up with you jerk-fashion then get over it. Don’t do him any credit by continuing to keep on your leash and collar.
Aprille and I talked about how, for us, it takes a very short time to get over things and it is often frustrating when we are talking/listening to people who can’t let things the frick go. At least Aprille and I were able to leave the room and do something productive (peeling potatoes).
Oh, and people, please expand your musical horizons. For the love of God.
Apparently I can’t be nice, even about my friends. I guess that’s what journaling is for. I’m sure I’ll have this all thrown back in my face someday by some unforeseen and unfortunate circumstances.

The Hard Life=Blessing

2010-08-24T13:38:00.000-07:00

I saw Dr. Smith today (chemical dependency counselor) and after we talked I realized that I had done and was doing the things that were so important to me to get back; things that narcotics had made difficult or impossible. I had been able to be there for Gina when she was going through that bad week. I also gave decent advice, I feel. I had gotten my friends out for a night on the town and had had a blast, even getting asked out. Those things would never have happened while I was on narcotics.

NOTE TO SELF: You don’t want to exchange this drug-free life for anything. The times when it’s tough are temporary. The straight-edge fun and freedom is forever.

Thanksgiving

2009-11-26T22:09:00.000-08:00

This is another post from the PSC Partners Seeking a Cure discussion board. The "friend" in this post is Rayne, of course!

I got an email today from a good friend who has inflammitory Crohn's. We have a lot in common besides our health issues so friendship was natural. Her email was just to say hi and that her husband forgot to get potatoes. My response is as follows:

No! Not the potatoes! Us sick people need bland starches, darnit! lolI made asian food and nibbled on a little of "real" thanksgiving stuff. I did eat pie. Last year I was too sick to eat much and there was no pumpkin pie left by the time I felt a bit better. I threw a pity fit about how it was already bad enough that I had missed out on Thanksgiving stuff and felt too miserable to socialize much and now my last shred of tradition had been ripped out from under me. This year I made sure to at least eat a piece, even if my stomach wasn't thrilled about it.

My friend responded saying she spent days taking Phernergan beforehand and had done alright in the eating department. However, she admitted to me, she was secretly not a Thanksgiving fan because of the emphasis on eating, which is always a struggle for her (and us PSCers). My second reply is as follows:

I'm with you on the "secretly hating Thanksgiving" part. Back before I was veggie I used to spit out my turkey into a napkin when my parents weren't looking. I was used to lunch meat (which I don't think really counts as "meat") but the real thing wasn't something I found very appetizing. My mom is the same way. This year I was able to eat okay, but I ended up getting weepy anyway because I was so drugged that I couldn't be "present" and have a good time. Right now I'm really going downhill and, after a week of being a normal 22-year-old and not going to the ER, it seems so cruel to be thrown back into this sick life. Especially around holidays where you have some sort of Hallmark expectation of yourself.

I thought that probably a lot of you were having some thoughts along the same lines. Maybe holidays can be hard for you because of your illness. If you need to rant about it, rant about it. If you have some tips, please share. Maybe by getting together and realizing that we all struggle on somewhat of the same level with some of the same things around the holidays will help us all feel less alone.

The Month of Health

2009-11-26T22:07:00.000-08:00

From teh PSC Partners Seeking a Cure discussion board:

So, by some miracle, I woke up one morning about a month ago and felt great. Yeah, I had my moments and still needed some pain med. But let me tell you, I was out shopping and driving. I bought high heels and lacy underwear and told myself I didn't have to face a life of Ugg boots and hospital-appropriate panties.

I wore makeup and did my hair. I hung out with friends. I cooked food. I ATE the food. I danced and laughed. My MELD went down to an 11....which wasn't so great, but my health was showing on paper, anyway.

I wanted to share this because, although this board is a good place to come when you need help, it's also a place to come and tell people, "Hey, things will be okay and I'm living proof of that!"

For the past 4-7 days (can't keep track) I've been really starting to go downhill. Back to where I started. It's hard and sometimes that brief breath of healthy air seems like a curse. Like life was taunting me or something. But deep down I know that's not true. I came back with new lessons, a new perspective and some cute new outfits. Before this happened I was pretty sure I wasn't going to live that much longer. I'd even written down some funeral plans and asked my dad to come to Lincoln so I could see him one more time. So believe me when I say, if a one-month-of-miracle-health can happen to me, it can happen to you.

Continued Health Updates

2009-09-23T18:06:00.000-07:00

September 17th:

Just want to let you all know I'm home from the hospital. More info later

September 19th:

Hi everyone,

Well, I'm back in the hospital. This time I'm in room 508 instead of 504. I had some crazy pain last night that couldn't be controlled, went to the ER and they admitted me. One X-Ray session and an ultrasound later all we have is an old, deflated ovarian cyst on my left ovary. It may have been there from the beginning or it may have been a new one that burst. My gyno is coming to visit me and talk about it tomorrow.

In the meantime, my dad is in town and I plan to drink as much fresh veggie juice as I can get my hands on. Gonna see if I can't get my juicer brought in.

September 23rd:

Hi everyone,
I've been so busy recovering I haven't gotten around to updating you all.

I was admitted back into the hospital Friday night/Saturday morning. I was still having fevers and was having so much pain that it took multiple doses of hydromorphone throughout the night to control it. Sunday morning the pain was doing better and my dad was in town so I wanted OUT! And out I got. I've still been having a lot of pain and tiredness but I can pretty much control it at home, although I'm having to take far more narcotics than I'd like to. Hopefully it's only temporary.

During this second hospital stay I had an ultrasound done that found a deflated, small cyst on my left ovary. The pain may have been it bursting. We don't really know.

The diagnosis from my first hospital stay: a had E. Coli, a UTI and, of course, that obstruction (which is now gone to the best of our knowledge).

Anyway, I'm home!

Painful Thoughts

2009-09-23T18:03:00.000-07:00

I’ve learned that there’s a difference between being in pain at home when you’re a comfortable temperature, in your bed, surrounded by those you care about and by familiarity and being in pain in building which is big with high ceilings, kept at a temperature appropriate for storing your perishable goods and filled with architecturally modern, but very uncomfortable, furniture (namely, the hospital plaza with all the doctor’s offices). It makes no difference that warm blankets, beds, small, dark rooms and pain meds are a room away.

Unfortunately, I have two things: pride and chronic pain. I’m too proud to always go around in a wheelchair (and will tell myself I need the exercise until I absolutely collapse). I’m especially too proud to be pushed in a wheelchair by a stranger (and most likely a retired old man stranger) who will ask me all sorts of questions all of which the answer to will be, "I’m too sick to do that." And, frankly, the whole point of the wheelchair is to keep me from experiencing more pain and exhaustion. But do you have any idea how much effort it takes to carry on these conversations retired old man wheelchair-pushing strangers insist on having with a young gal like myself?

Second thing: chronic pain. Doctors don’t like to deal with people who have chronic pain. And when you’re already on a high dose of the world’s most potent opiod, what more is there for them to do anyway? Besides give you the IV version (God forbid!). Doctor’s are always trying to find something else to blame the pain on, too. And I’ve learned that the pain scale is crap. I could say my pain is a 12 on the pain scale and I doubt my doctor would bat an eyelash. Now don’t get me wrong, my doc is doing the best he can and I know it. The poor soul has no idea what it’s like to be me and he doesn’t want to know. And I don’t blame him. He, along with most of my other doctors, is scared of a case like mine. He can’t cure me and one little wrong step on his part could mean severe consequences. I mean, autoimmune disease, plus, on-the-transplant-list, plus chronic pain equals hot potato. No one wants to touch it. Except those really super brainy doctors who come from India. God bless ‘em.

Also, don’t get me wrong and think I love my pain meds or something. I hate having to take narcotics. I mean, I’m a mostly raw vegan. I don’t even put most dairy products into my body. I wish microwaves would die. I get super excited about movies like No Impact Man, Fuel, and Food Inc. Why would I put something as toxic as hydromorphone (Dilauded) or Oxycontin into my body on a daily basis? Because otherwise there wouldn’t be me. I would be dead. Or like Neville Longbottom’s parents (from Harry Potter). Each day would be another level of hell. With these drugs I can cuddle my rats, read books, make origami and spend time with my family. I choose that, even at the expense of putting something horrible into my body.

Even with as much medication as I take daily for pain, I’m usually trying every other avenue first. I’ll try a hot bath, meditation, deep breathing, prayer, etc. If I can get by without the pain med, by golly I will. I don’t want to get into the withdrawal cycle. Many times a good nap and some deep breathing have kept me from having to resort to super narcotics. And even if I do have to take the pain pills I continue my natural methods.

If you were to walk into my room while I was visiting the ER for pain reasons you would hear soft music or Gamma waves playing through some small speakers hooked up to my iPod. The TV would be turned on to the hospitals relaxation channel which shows calm scenes from nature (my favorite are the dolphins). I will usually be keeping as warm as possible and taking deep breaths if I can. After my pain is controlled I may look at pictures of angels, read a soothing book, meditate or just plain conk out.

Anyway, what I’m trying to say is I’m not some sort of narcotics purist and I’m not an addict. However, I will admit that I’m afraid of pain despite its constant presence in my life. So I do choose to use narcotics both for quality of life and because I’m a wuss.

Health Updates

2009-09-15T16:35:00.000-07:00

Later on September 12th:

Let's see...I've been put on Cipro (an antibiotic) and I had a very painful ultrasound of my liver done. UNMC said that if my bile ducts looked dilated that I was to be transferred to the hospital there. I hear the ultrasound looked normal, but tomorrow we'll find out for sure. My fever went down but then this evening went up to 100.2 . I just want to keep my blankets!!!

Been having a lot of aches and pains today that aren't controlled very well. I've also felt very weak and cranky. Not feeling very happy right now. Still, not a bad day. I made lots of origami and gave a string of stuff to my nurse. I have a barf basin on my table filled with origami things with a sign that says, "Take One! -Becca) except instead of a dash there's a heart by "Becca".

Natalie/Ginny came to see me and got me a balloon and real food from Open Harvest. She also tought me to play the card game, Golf. Thanks, Gin!
Well, I'm off to fall into a drug coma.

September 15th:

Hi all.
I'm still in the hospital (Bryan West, room 504). I've still been running fevers and have E. Coli and a UTI. I've been having a lot of pain and nausea so I've been pretty doped up most of the time. I have a thriving origami business going on. I make things for my nurses and docs and other people started wanting them to so I kept making stuff. Now the whole front of my table is filled with origami. There are papers to take, too. One I wrote out about what Origami Wishes is about and what the different things (like turtles or stars) symbolize to me. The other paper is a copy of the newspaper article I was in. I've been given $1 in tip money and now have a little box sitting out that says TIPS.

Kathy brought me veggie juice yesterday. I cannot even tell you how good that tasted.

Today I got an abdominal CT and I'm still running a bit of a fever. We were thinking I might be able to come home today but it doesn't look like that's going to happen. Anyway, there's probably a lot of stuff I'm leaving out but the drugs have made everything kind of a blur.

Later:

Okay, so I may be getting an ultrasound to look at my ovaries to make sure they're not the source of the fever. The fever should be gone by now with this much time on the antibiotic. Also, since bowel stuff is still an issue I'm going to be getting a colonoscopy on Thursday. So I'll be here at least until then.

Hospital Time

2009-09-12T06:06:00.000-07:00

Okay, so I have a fever of 102.8 and have narcotics in me. So, if this update is a disgrace to the English language, I apologize. Happy reading!

September 8th: The past few days I've been feeling feverish, weak, etc. I'm having big time nausea. I go to the hospital to get a shot of Zofran through my port so I can take my meds. The nurse is kind enough to leave my port accessed. This means that the needle that goes into my port is left in like an IV. There's a tube sticking out to administer medication. Accessing my port can be a pain, so having it pre-accessed is nice. Saves me a poke if I have to get more med put in.

Nightime: I'm having bad stomach cramping and lots of gas. I take my breakthrough pain narcotic (hydromorphone) but don't have any luck. I'm up all night with pain.

September 9th:

7:30 AM: We go to the ER to get my pain under control. I get an X-ray that shows I'm somewhat constipated but have a lot of gas. I'm given an enema and I go home.

The rest of the day is spent at Gramma's so I could be in a supervised drug coma. Mom had to work. I continued to have pain and took lots of narcotics.

That night I started to have body aches and a fever of 99.5.

September 10th, 2009

Midnight: Mom and I go back to the ER. An X-ray is done and it turns out I have a partial bowel obstruction. Time to suction! One of those nasty tubes is put down my nose and into my stomach and is them hooked up to suction. I started to get some relief from that, although the tube was a pain in the rear. Or rather, the throat. I'm admitted to the hospital for the night so they can continue to suction and give fluids and pain med.

During the day I have X-rays, blood tests, etc. The main thing is the pain in my throat from the tube. I even had to have major doses of pain med to make it somewhat bearable. I learned from my local GI and some of the on-call docs that the obstruction had happened because scar tissue in my abdomen (from all the surgeries) had tangled itself in with my colon. By late afternoon my tube was pulled. Hallilujah!

I'm on clear liquids, which to me means coconut water, clear veggie juices, water, herbal tea and vegan veggie broth with no MSG. To the hospital clear liquids means enough high fructose corn syrup to give me fatty liver disease. Jello, "fruit" juices from concentrate that have all sorts of weird acids in them and caffinated tea. The veggie broth was tolerable. I had coconut water (high in electolytes, potassium and mighty tasty) and herbal tea brought from home. Otherwise I ate a little jello, veggie broth and water.

At night I had serious itching so they tried Benadryl through my port. Omg, I was so out of it and asleep in minutes. I have very little recollection of the rest of the night other than continuing to itch and getting a pill of some sort that cleared it up.

September 11th, 2009

I'm put on a "soft foods" diet which includes milk, pudding, more high fructose corn syrup drinks and more milk. Thank God for Cream of Wheat. I mean, what's a semi-vegan, lactose intolerant girl to do? I got to have foods of my choice for dinner. The salad was sad, but hey, it was salad! I asked for whole wheat bread and got white bread with brown coloring in it. Mom brought me brown rice cakes. Thanks, mom!

This day I slept a lot. I read. I organized my room. I waited for doctors. Mom was at work so I was alone most of the day. I had a student nurse taking care of me. She accompamied me on an X-ray check-up. A nice guy always pushed me there in a wheelchair. The student nurse and the wheelchair dude were talking about school and careers and whatnot and I realized they were both younger than me. It's werid to be getting older and have people younger than you taking care of you in the hospital....

At some point I spiked a fever around 101.7 . Of course, there was no leaving the hospital with that going on. I had blood cultures, stool cultures, urine tests, one of those nasty nasal swabs and an exam by the doctor. In the evening my temp started going down to about 99.2 . They tell me I can go home in the morning provided my temp doesn't go any higher.

I'm still having body aches and needing pain med for it.

September 12th, 2009

5:00 AM: The tech comes in and takes my temp. It's 101.8. Later it's 102. 8 . My blankets are taken away, a cold cloth is put on my head and my room temp is brought down to 60. It's awful. I'm always cold.

Blood cultures are done, I'm given Tylenol. Now we're waiting for further instructions from the doctor. UNMC will be contacted.

My temp was just taken again and it's down to 101.2

Phew! It's a crazy world.

Tantrums

2009-09-05T21:16:00.000-07:00

I'm very, very drugged right now which means that I can actually sit up (sort of) and write a health update. I just haven't had the energy or been free from discomfort long enough to let you all know what's going on.

It's been a very, very trying time lately. There have been so many ER visits and so many problems that plague me that have no answers. It hasn't been easy for me to be hopefull and positive. I have to admit that I sometimes wish for death since my life (at least these past few weeks) has consisted of staring at my bedroom ceiling and crying or moaning or being stressed out.

I still keep up my routine of meditiaion, yoga and Tai Chi (when my neck will allow it), raw food vegan eating (especially lots of veggie juices) and rat therapy. I would love to get a wheatgrass juicer so I can start juicing and growing my own wheatgrass. Tastes like chocolate to me...go figure.

Anyway, I'm having a really hard time not throwing tantrums at the moment.

I've been itching so much my entire body is covered in scabs and rashes. All I can do for that is put on a special cream. Otherwise the only cure is a new liver (MELD is still 15 by the way). I'm either sweating for freezing. Or both. So far no actual fever has showed up on the thermometer but a breif 99.0. Transplant patients don't run fevers since they're immuno-suppressed but apparently no body cares about a 99.0. Only a 100.5 or above.

I've also had encephalopathy(that's ammonia on the brain) really, really bad. Running into walls, forgetting my birthday, hallucinating. It's absolutely horrid. There is no sense of self. You can't distract yourself because nothing holds your interest and you can't understand it anyway. It's been better tha last couple of days when I stopped taking Benedryl for my itching (it didn't help anyway). But I'm still rather crazy.

Somehow I managed to clean my room today, organize my closet and part of the attic. Excellet day; completely unheard of. Then I slept for almost 4 hours and woke up and immediatly took narcotics because my head was killing me. A nausea pill, two Xansex, a super-morphine, a veggie juice and a ginger/lemon/cayanne/honey tea later I'm very drugged, very itching, but able to at least keep something down and not want to blow up my head everytime I move. Thank goodness for deep breathing, home remedies, raw foods and pharmacutical narcotics, huh? I like to keep my health approaches balanced....

If ya'll didn't check out my blog from awhile ago called "Yellow Girl" you should. ( http://beccaspeace32.blogspot.com/2009/08/yellow-girl.html )
I got the sweetest letter from a fellow PSCer and how I had "changed her life" with that blog.

Anyway, I seriously need prayers, good thoughts, good energy and all that stuff right now. I totally believe in it and I appreciate it so much. Please ask for some extra stenghth, courage and grace for me right now. I sure need it! And pray for my mom, too. She has a sinus infection, a job and then ME, her full-time job.

My liver tests haven't been looking too horrible.
My MRA and MRI looked normal, so no anyurism or anything. Which is good but then....what is it?

My doc wrote us a presciption to go to the newest, fanciest health club that has a really warm wave pool thingy and all that good stuff....Hello hydrotherapy, massage, sauna and yoga class! Oh, and health food bar! Maybe I'll never leave....

Yellow Girl

2009-08-25T03:45:00.000-07:00

Apparently I'm not sleeping tonight. Or rather, this morning. I went to sleep around 12:30 AM and woke up around 4. I've been up since.

I just went to the bathroom and, somehow, in the last hour, I've gotten totally yellow and zombie-like. My first reaction was, “Whoa, look how scary and sick I look.” But then I changed it to, “Look how sexy and beautiful I am! I'm a yellow, sexy woman. Look at me, I'm yellow girl and I'm gorgeous!”

I did a little dance and laughed at myself in the mirror. I told myself that if anyone could make jaundice amazing, sexy and cute, it was me.

I don't know what will happen today. Maybe I'll be admitted to the hospital. Maybe my headache will get out of hand and I'll suffer and cry through the DEXA scan. Maybe my headache will completely go away and the scan results will be amazing. Maybe I'll never get another headache again and get to stay home with my wonderful animals and be in my sacred space instead of trying to do yoga and make juice in a hospital room. Who knows? It's up to my outlook and the Universe. I trust that everything will turn out as it should. If I can see the life, joy and love in every moment, even if it's while being hooked up to tubes and machines, then I will make it through.

After all, today I'm that amazing super hero, Yellow Girl!

Green Goddess

2009-08-24T10:15:00.000-07:00

If you haven't seen the movie Crazy Sexy Cancer by Kris Carr, you need to see it. Now. Go! Okay, finish reading this blog first. Then go watch the movie.

Inspired by Kris I got myself a cheap juicer from Target. Oh the beauty! Oh the convenience! Do you have any idea how many dark, leafy, wonderful greens I get into my body everyday? A lot! And then there's the carrots, apples, grapes or whatever else I feel inspired to chuck in the juicer. Note to self: I do not like tomatoes or beets (however good they may be for my liver) in my juice.

I feel like I'm on the top of the world after I drink my morning veggie juice. There's energy, mental clarity and all that good stuff. Plus, I know that in juice form I can assimilate the nutrients I need right away without my liver having to put itself through the paces. And we all know how much trouble Becca has assimilating vitamins. Plus, who wants to take a vitamin when you can have all the whole food benefits of luscious kale? Or cabbage?

I've been really getting into the raw foods diet. Not totally raw, mind you, but still very raw. This morning I had my juice which included:

1 carrot
1 apple
about 8 grapes
cabbage
kale
dandelion greens
romaine lettuce
parsley
celery
cilantro

and I had a bowl of cooked oat bran with flax seed oil and fresh blueberries.

I highly encourage everyone to do a bit of research into raw foods and a mostly raw food diet. It makes so much sense and I guarantee you'll feel better. True, I'm going through a lot of medical crap but I still manage to do my yoga, spend time outside, think happy thoughts and go on the occasional outing. The time between medical crises is so much richer, fuller and healthier.

In other news, here's what I'm reading:
-Messages from Your Angels by Doreen Virtue, Ph.D
-The Raw Food Detox Diet by Natalia Rose
-You Can Heal Your Life by Louise L. Hay
-Crazy Sexy Cancer Tips by Kris Carr

All highly recommended!

Health Update

2009-08-24T10:14:00.000-07:00

Whoa. I am so totally overdue for a health update. Sorry, people.

I'm afraid that this time the lack of news is not because I've been doing great but rather because I've been so busy being sick/being in the hospital.

My main problem has been headaches and migraines. Yes, there is a difference. And I'll get them at the same time. We think the headaches (which start in the neck and have occurred since my aneurysm-worthy stress test) may be because of some pinched nerve from the stress test. Yesterday even had an episode where it felt like the whole right side of my brain went numb. Probably not a good sign. The other thing has been heart palpitations that can get really severe. And, of course, constipation because of the tremendous amount of narcotics I'm having to take.

I've been to the ER three times in the past week. First time for a headache. Second time for abdominal pain and vomiting and then I got a headache while I was there. Third time, last night (or rather, this morning) for a headache/migraine.

So we're thinking: NEUROLOGIST. I'm also thinking I should just be admitted to the hospital while they do investigative work so that I can have pain control. This back-and-forth from home and the ER is very tiring on all of us, especially my mom who is at her first day of school today accompanying for the Wesleyan students. It's also Natalie's first day of college at UNL! She's moved into the dorm and seems to be enjoying herself.

Anyway, in other news, the insurance stuff is stable for now.

Fever

2009-08-12T14:56:00.001-07:00

Yesterday I woke up with swollen tonsils and glands. I could hardly swallow of cough. I don't really remember much of what I did yesterday. I think I slept. Oh, yeah, I remember. I sort of went into a coma. As in, I slept really, really hard.

In the evening I had all this horrible pain and just lay in bed crying. At one point I took my temp and it was 101.5 . That meant blood cultures so off we went to the ER. I got the blood cultures plus a few other tests and some pain med. Everything came back normal. However, I've been on antibiotics for a week or two and just started a new one yesterday, so that probably made some of the tests look better. I'm going to see the doctor tomorrow morning to get checked out. There's a possibilty that this is viral and that's why antibiotics aren't working.

Today I'm about the same, though not is quite as much pain and my temp is down to 99

I have to admit I'm a bit scared as things like this can be very dangerous for someone waiting for a transplant.

On a legal note, I've just had to deal with getting out of jury duty. Also, my insurance ran out so we're racing to get something figured out until I can get disability. It's a rather stressful time.

Colonoscopy Craziness

2009-08-10T15:45:00.000-07:00

After two days of fasting and bowel prep (leaving me nauseous, constantly sleeping and 5 lbs smaller) I went in for my colonoscopy on Friday. I had asked multiple times during the previous week if anesthesia had been scheduled since I'd had to cancel the year before because someone didn't schedule them. On Friday none of the nurses could access my port (which has been moody lately) and I had to have an IV put in. I was ready to go when the doc noticed anesthesia hadn't been scheduled!!! A nurse tried to get someone to come but anesthesia was booked for the rest of the day. So home I went. We were NOT happy.

Saturday I ate very little since I was still nauseous from the prep. Sunday I started prepping all over with 5 different laxatives (since I can't take the one they would normally use). It didn't clean me out as well as I would have liked but I was guessing that doing a prep so soon after the other one was part of the reason. Also, I only fasted for one day this time. I wasn't going to starve myself and I was low enough of vitamins already. I did my best and went in today. Again my port couldn't be accessed and I had to have an IV. I went under full anesthesia even though I have possible bronchitis.

When I woke up the doctor told me they hadn't been able to do anything because I was FOS (Full Of Stool). So now we have to reschedule AGAIN. That is, if I consent. I'm kinda feeling like I'm done.

In other news my MELD is 15, and apparently I'm having some sort of problems because I had to have extra blood tests done over the weekend. Guess we'll find out about that.

ER visit

2009-08-02T15:29:00.000-07:00

I had a horrible headache and nausea today. No amount of narcotics or Imitrex was helping. I think the headache was mostly leftovers from the stress test but I'm sure some sinus pressure was added in.

I went to the ER and they gave me Zofran for the nausea and morphene for the headache. The headache didn't go completely away but I'm not complaining. The pain was just terrible. I could hardly think.

Now I'm at home and Gramma has made me cold cucumber soup and I'm reading and making lucky stars. Tomorrow I go to Omaha for my regular appointment with my liver doctor. I get to go visit my friend Rayne while I'm there which I'm looking forward to.

Stress Test

2009-07-31T11:00:00.000-07:00

I've gotten a little better when it comes to the stuff that was going on last week. But I've certainly made up for it in other places.

One day I all of a sudden felt really, really horrible and shortly after had an "ammonia episode". Apparently the ammonia has been building up in my brain and I haven't been keeping on top of it as well as I should. I went a little crazy. I don't care to go into details.

Also started having a raw-feeling throat and before long a cough. Saw the doctor today and I've got swollen glands and red spots in my throat and all that lovely stuff so I got put on antibiotics.

Yesterday I got an echocardiogram and a stress test done. I'd never had a stress test done, bt UNMC wanted the info so they could make sure I was still ship-shape (relatively) for transplant.

First the nurses screwed up accessing my port so they had to call in an expert.

For the test I was given a medicine that sped up my heart rate. It didn't really work so they gave me some stronger stuff. A minute in to having this put in me I started screaming. I thought I was having a stroke or an aneurysm. The muscles and blood vessels in the back of my neck and head felt like someone was stretching them on a taffy puller. My heart was beating in my head as if I'd been standing on my head for hours. My jaws shut and my tongue swelled up. It was all I could do to tell the doctor what was happening. They stopped the medicine immediately. I had to squeeze the doctor's fingers and it felt like a Herculean effort. The only thing to do was wait while the medicine wore off. I probably lay there for five minutes (it felt like 10 years and I was sure I was going to die at any moment due to Exploding Head Decapitation or something similar) until the pain was low enough that I could start crying like a baby. Even then the pain was at about the level of a banging-my head-on-hard-objects-and-going-to-the ER migraine. After about 10 more minutes, an oxycontin and many cold compresses I was able to slowly roll over so that an full echo could be done since the doctors were obviously not going to be getting a stress test.

I was then wheeled out to where my mom was waiting to pick me up. She must have wondered why a nurse was wheeling me out of the hospital after an everyday medical test.

The fact that I had sinus congestion, had taken my blood-pressure lowering medication the night before, have asthma and two minor heart problems are probably some of the reasons the test went the way it did.

I came home, took an Imatrex and went to sleep. My head still hurts horribly today. I've had to take hydromorphone to make it bearable. Hopefully the horrible heartbeat-speeding drugs get out of my body soon and all is back to normal. Well, semi-normal.

Two Health Updates

2009-07-22T05:20:00.000-07:00

Monday:

So, yeah, I've been really sick. I've been having weak spells where I can barely move, I've got a fever, I'm achey, I'm shakey, I have ammonia in my brain plus about a billion other things. I've been seing my doctor a lot and we even went up to Omaha. I'm seeing my chiropractor every other day. It sounds like the doctors WANT to hospitalize me, but they don't have a reason that insurance will buy yet. Omaha is getting a copy of the CD of my CAT scan tomorrow and that'll give them more information.

In the meantime I'm lying in bed sleeping or making origami. Or just plain staring at the ceiling. Thank goodness for nurse Velvet and the rats.

Tuesday:

I was told if I got a really bad "weak spell" (one where my heart beat goes all mushy and my breathing gets shallow) I should go to the ER. So go to the ER we did last night when I had a weak spell and aches all over that even heavy duty narcotics couldn't take care of. The doctor didn't really understand what I was experiencing even though I tried to describe it in many different ways. Nevertheless, I was given more pain med, got an EKG, blood cultures and urine sample test done. So far they are unconclusive. So far. I'm also wearing one of those 24-hour heart monitor thingys.

Also in the works: tests for my 1-year-on-the-transplant-list checkup and seeing the pulmonologist about my breathing problem. Oh, and the colonoscopy :(

UNMC should have gotten my CAT scan today and I called them but they never called back.

My doctors are being exceptionally brainless at the time I need them most to help me. Add to that the fact that I'm a medical mystery.

Quick FYI

2009-07-14T19:33:00.001-07:00

I don't have a bunch of update-y stuff today. Just wanted to say that I'm not doing so hot. Lots of crap going on. I'm even more weak and tired than usual so my communication (like answering the phone, returning emails, etc) is going to leave much to be desired. Sorry about that.

I'm off to lay down and zone out.

Health Calendar

2009-07-07T19:32:00.000-07:00

I think I'll do this health update in calendar format:

Thursday:
Saw the Pulmonologist. He gave me a nose spray for my rhinitits and scheduled a sleep study. Mentioned I probably had sleep apnea.

Friday:
Woke up with an 'episode' and went to the ER. Got some lovely drugs and an x-ray. I was more constipated than probably anyone has any right to be. Had a special enema. Went home to drink copious amounts of laxative tea.

Saturday:
Spent most of the day in bed groaning or in the bathroom. At least I felt well enough to check on the garage sale a couple times and watch Jay and Ginny set off all our fireworks.

Monday:
Did breathing tests. They hurt my lungs. Then got my port looked at (it was fine). Had a sleep study in the evening. Failed to sleep. They finally caught a bit of REM just before they had to wake me up to go home. Hopefully I do it over. I feel cheated since I didn't sleep.

Tuesday: Found out I have to have a few tests done in addition to my colonoscopy (which is August 7th). Apparently transplant patients have to get some work ups done yearly while they're on the list. I've never been on the list more than 6 months before, let alone a year, so I didn't know about this until today. Makes sense, though. Hello more medical tests! If I die of radiation poisoning blame "them".

I'll let you know more as things progress!

Symptom Paper

2009-07-02T16:04:00.000-07:00

If fly paper had a cousin called "Symptom Paper" I'd be it. Really. In order to make my disorganized body look more organized, I've made a list of symptoms to rattle off at my many upcoming doctor appointments and over the phone to overworked nurses.

1. Itching, particularly when lying down and on back of neck and sides. Could be the liver expanding and stretching the skin. Still have to try "liver cream" a concoction made up by the doctors at UNMC.

2. Enlarged liver and liver pain.

3. Shortness of breath even with all my breathing treatments. I saw my Pulmonologist today and we're doing a sleep apnea test, a heart ultrasound and trying a new drug.

4. Low appetite

5. Dizzy

6. Confusion

7. Sleeping a lot, though still suffering from some insomnia because of discomfort, pain and lack of breath.

8. Body temp is cold and having occasional chills.

9. Stomach cramps and nausea. Blood....

10. Increased physical anxiety and RLS probably linked to the depolupron shot I had yesterday.

11. Heart palpitations (even when I haven't had albuterol)

There's a possibility of a fluid collection near my liver so I'll get a CAT scan to see if one exists and if it needs to be drained.

Anyway, yeah, that's where things are. More tests and whatnot will give us more info. Mirarculously (I say with sarcasm) my MELD score has gone down.

The Latter Days

2009-06-28T12:44:00.000-07:00

Every day of sickness can seem like a year. Sometimes every moment is so clear and precious. Others days every moment is a frustrating boundary or a dark cloud of pain. I've been having some of the latter days.

I know it is beyond my control, but I'm tired of not being able to be the loyal friend I think I should be. Everyone works so hard for me and gives, gives gives. Sometimes I think that if if I'm not working towards something (like returning a friend's phone call or finalizing plans with them) then everyone else must be having to work extra hard. Then I feel guilty and I feel angry at my disease. I feel like I'm constantly letting people down.

Living with a such a severe illnesses as mine is like living between the worlds. I know I've said this before, but I think it bears repeating here. When you're living “between the worlds” you feel like if you can't be a part of the lives of those around you and the world around you then you'll disappear. And yet the amount of effort it takes to communicate, to connect, seems gargantuan at times.

I've told my friends to always let me know what they're doing so that if I feel up to joining in I will. But more often than not I have to turn down invitations. Everytime I do that I feel like I've let them down, like I've given in to my disease. I know this isn't true, but it's how I feel. When I do get out to be with my friends I often end up pushing myself or covering up any pain I'm feeling. I don't want to let the disease win. I feel like if it shows, if it interferes, it wins. I also feel like I'll worry my friends too much if they see my true condition.

Yesterday, however, I decided that my friends wouldn't want me to be putting on some mask. I tried really hard to allow myself to be how I feel. It's hard, though. I cover up even at home. I'm tired of having to have people take care of me so, even if it kills me, I'll get up to do something myself. Or maybe I'll hide my symptoms until I really can't anymore.

I wish that people would come here to see me. It seems like my friends very rarely come over. I'm always coming to them. At home I feel like I have more permission to be sick. At home I can stay in bed, I can wear whatever and I have all my “supplies” at hand. I realize people want to get me out of the house and I appreciate that. I do like to get out of the house. But most of the time it's far more trouble and pain than it's worth.

Then I think that if people did come over I may be too sick to really respond to their conversation or to participate in what they're doing. Again, all they do is give and I have nothing! I feel so guilty and selfish because of it. I want everyone to realize that, although I may not respond to you with the feeling you expect it's not because I'm not interested. It's just that communication is so much work for me. Sometimes it's all I can do to send a simple text message.

And all of those times where I seem to disappear or fail to communicate—I haven't stopped thinking about all of you! If only you would come to me then maybe I could express how much I appreciate you better. I love it when people come to visit me!

It seems that I am doomed to fall short of others' expectations. Or are they my expectations? And I mustn't think that.

There will be a miracle.

I will get better.

What Becca Has Been Up To

2009-06-24T16:02:00.000-07:00

So, I'm sure you're all wondering what I do all day, right? No? Well I'm going to tell you anyway.

Becca's To Do List

1. Start writing more of The Master Painter and hound Becky some more about the illustrations.

2. Eat more asian food. Also, try to make broth for noodles not as bland..
3. Learn to speak and read Japanese so I can read the instructions for my microwave rice cooker:

4. Organize asian food stash:

5. Make more origami stuff!

6. Bow down before the wonderful new nebulizer. Ahhhh....(Mom says I look like I'm smoking a hookah. Scott, Rayne's husband, says it's a peace pipe. Sorry guys, all I'm 'smoking' is albuterol)
7. Read more books. At the same time try not to go to the library so much...the librarians are starting to look at my suspiciously. Also, remind oneself that Odd Thomas is a fictional character and therefore cannot marry me...*sigh*

8. Work on copying asian recipes. Maybe someday I'll have people to cook for...

9. Try not to miss the foster baby rats too much (The went back to CCRR).

10. Get to Level 15 on FarmTown.

11. Prance around in my new cute clothes.

12. Try not to cry everytime I think about James and Gina moving.

13. Try not to think to hard about upcoming colonoscopy.

The Scoop

2009-06-18T16:01:00.000-07:00

Here's the scoop people:

1. The breathing issue got way out of hand so mom and I made a 3 AM trip to the ER where, as I feared, the doctor just looked at me and told me there was absolutely nothing wrong with my breathing. This made me very upset since I had been being worn down over a period of some-odd days of really working hard to breathe. The doc gave me a simple breathing treatment and sent me home. The treatment lasted me about 12 hours or less. Thankfully, I saw my chriopractor and that really helped. I also did some special yoga and yoga breathing techniques that helped. I'm on a higher dose of my inhaler now and it seems to be helping for the most part. I'm not a wonderful breather, but lack of oxygen isn't taking up my life right now so I'll take what I can get.

2. I went to get my port declotted yesterday. I will repeat here the words of my dear friend Gina who said, "Becca, I know you....and you would never clot." And she was right! The nurse at the specialty clinic flushed my port no problem. Turns out the nurses who tried to draw my blood had gone to the side of my port. Now I have to put compresses on the port site to get all the saline they put under my skin to absorb.

3. I've been having a wave of sinus headache/migraine mania. Just when one starts to let up another comes in. I've had so much Imitrex in the past 24 hours....it's probably illegal. Today I decided to take it easy and lie around and read and sleep. Seems to help.

An Overdue Health Update

2009-06-12T20:32:00.000-07:00

Hi all,

I've been lazy about updating (as usual).

Let's see...I've been doing acupuncture and adjustments with my chirpractor. That's been awesome. I always feel better when I leave.

I went to get my port flushed and get my blood drawn from it today. I had my two week aniversary with the port on Wednesday. I needed a blood test and I figured getting it flushed at 2 weeks was better than the recommended 4. No such luck. I've already developed a clot. So I'll be going in to get that taken care of soon (they just put a blood thinner in the port and let it sit for awhile).

I've been sleeping a lot lately and not eating a whole lot. Still, I've gained 4 lbs. At least, we think so. It could just be stuff sitting in my system.

Breathing has continued to be a big problem and I'm on a new inhaler. So far...well, it's better. But there's still room for improvement.

Been suffering hot flashes while my insurance gives the gyno the permission to continue giving me my injections with coverage. Obviously my insurance is run by a man...

Insomina has been really bad lately. Normally I don't mind because it means I can just stay up and read. This time around it's been like trying to fall asleep on caffine. You're SO sleepy but nothing happens. And I don't drink caffine except the occasional cup of green tea upon waking. Restless leg isn't helping, either. Unfortunately this means I've been having to take Ambien every night. I really don't like taking that stuff, but if it's what I have to do to stop the torturous nights, I'll do it.

I survived my sister's graduation weekend.

In other news:
*My car has a new battery so I can DRIVE!
*I got a new iPod. It's purple.
*I'm attempting to learn Japanese.
*I'm eating an almost completely asian diet. This does not mean I eat asians, contrary to popular belief. In truth it has a lot to do with rice, noodles, seaweed and coconut milk. My stomach has been rejecting European/American food.
*I've been getting my butt kicked by 6 personal rats, 15 baby rats and 2 mother rats.
*I've been taking bellydancing and doing restorative yoga. Nothing cures constipation like bellydancing
*I'm threatening to stay in bed and not eat if my loyal friends make good on their plans to move east. Wait, don't I do that anyway?

Recovery and Peace

2009-05-30T23:03:00.000-07:00

I'm burning clove incense (clove is good aromatherapy for pain) and listening to soothing music tonight. It's a peaceful end to another odd day. Gina came and (bless her) finished cleaning the rat cages for me. She also helped me with some room stuff like sweeping under the bed, putting up a little hammock for doo dads and securing my bedside caddy to my recliner. What with the room projects and the nice dose of hydromorphone I was ready to do some more work so I did. Mostly I worked on tidying my meditation space which consists of a footlocker full of my writings and some very special memoribilia, two cushions for sitting on and some pretty focal points placed on top of the footlocker. Right now there is a beautiful peony my mom picked for me and put in my favorite blue bottle. I love having living things as part of my altars but I tend to kill most plants so I've ended up with a medium-sized collection of bamboo. I believe everyone, especially the ill, should have living plants around the house. They are so very healing.

I've been feeling very odd lately. I had my couple days of recovery and pain but there have been other things, too. Since the surgery I've had increased physical anxiety and restless leg. My breathing has been worse and I've been very dizzy. I seem to have more of an ammonia brain, too. So I apologize for any strangeness of lack of communication or forgetfulness. I've also had some weird nausea patterns. I plan on calling UNMC and updating them. There's probably nothing to be done, but I should be letting them know.

Me with my port bandages.

In the meantime, I've been trying to help myself along with extra rest, meditation, healthy food and the like. Last night I was up to going to my bellydancing class (something I actually have a talent for). It was a blast and didn't wear me out. It did me good to get out of the house and get my circulation going. It cleared my head quite a bit, too. However, today it was back to being spacy and weird. Even so, I spent the morning outside reading, meditating and doing a bit of yoga.

I've made appointments to see my first chiropractor/acupuncturist. He also does some other therapies that may help me too. Then tomorrow I'm going to see my yoga teacher to do some restorative yoga. I know these things will help me to feel better. I really don't believe in drugs for the most part (although they have their place). Don't get me wrong, I take my medication. I'm just not happy about it. In my experience, holistic methods have always delivered deeper, more profound results.

The meditation altar:

The foster rats are getting bigger and crazier. I'm uploading some new videos to YouTube and some pictures of Pearl's new litter, who are almost 2 weeks, are up on Photobucket (links go to my accounts).

Just an FYI: My sister's graduation party is next Saturday from 6-10 PM at my Gramma's house. Everyone is welcome!

Sweet dreams, everyone!

A Vacation Well Slept

2009-05-26T19:49:00.000-07:00

Picture, left to right: Me, Scott, Katy, Rayne, Michelle.
I really should have blogged over the week, but I was either sick and/or sleeping or out seeing the sights. Or often chasing rats and bothering Rayne.

Tuesday the 20th I had a few pre-op tests at UNMC (University of Nebraska Medical Center) to prepare for my port placement the following Tuesday.

After the tests were done and some lunch was eaten I was dropped off at Rayne's house for a week of vacational bliss. True, I was sicker than usual, but that was why I needed the vacation. And there's no better place for someone like me to vacation than Rayne's house. My friend Staci commented that she was sure Rayne and I were breaking out the tequilla and playing poker. I replied by saying no, it was more along the lines of syncronised napping and the swallowing of prescription drugs. That kinda sums it up.

Rayne, like me, suffers from a bowel disease and chronic pain. We share many of the same medical woes, not to mention our shared love of writting, art, rats and spirituality. Needless to say, I'm very comfortable at the Mazur household. There's everything I need from cats to rice milk to padded toilet seats. Did I mention all the awesome books?

I spend a lot of time shopping with Nathan and Michelle. I chatted online with Katy while she sat three feet in front of me. I made Scott go pick me up a prescription. I terrorized the animals.

I ended up sleeping quite a bit. I could have slept a lot more but I just couldn't let myself when my friends were in the other room doing interesting things. Still, I managed to complete most of the projects I had intended to do like burning CDs for Rayne, making Scott an origami turtle garland and playing with Rayne's art things. I made a couple pictures which Rayne then photoshopped into what you see above. Isn't it beautiful? I mean, my paintings were okay but she made them look really cool.

I got to go to Ren Faire twice. Once with Michelle and Nathan and once with Rayne, Scott and Katy. The fresh squeezed lemonade was divine. I bought a skirt, raw honey, a wooden bowl, wood roses and a bunch of my favorite soaps.

All too soon my vacation came to an end. I usually get very homesick but this time, had I been a toddler, I would have thrown and tantrum and begged to stay longer. However, I had surgery scheduled early today so my mom came to get me yesterday and we got a room at the Lied Transplant Center so we would just have to walk a short way (indoors) to the admissions desk in the morning. Like, the early morning when God isn't even up yet.

Our room was beautiful. It has a living room and kitchenette suite, a large bathroom, two TVs, huge windows and lots of storage. I had a horrible time trying to sleep, though, and so did my mom. Luckily, neither of us get too cranky in the morning.

My surgery went fine. Apparently they had to poke around quite a bit. So now I have a lovely port, which feels really weird. It goes up into my neck so I can't move my head that well right now. Rayne assures me this will pass. I am now just like my three sick friends who also have ports. I gotta keep up with the trends, you know?

To see some more pictures of my trip click here.
Videos to be posted on my YouTube account soon.

Insomnia

2009-05-17T04:41:00.000-07:00

I really hate having insomnia. It's so unpredicatable and I never know if I should take medication until it's too late.

So this morning I'm pulling a Rayne, I guess. I got up just a little after 5. If you know Rayne, you'll know this is a common practice of hers. Or rather, unchangeable bodily habit.

Anyway, I read for a little but it go too hard to breathe lying down so now I'm in the recliner. Still can't breathe, though, despite using two inhalers before bed. No matter, though. Saturday Night Live political spoofs are better than breathing, right? Right.

It's now almost 7 and I can see the sun rising through a crack in my curtains. If it wasn't so cold I'd go out there. I think maybe I'll try going back to sleep.

Shake Shake Shake

2009-05-14T09:19:00.000-07:00

I'm feeling pretty good today. I'm still really shaky, though. I've been practicing my singing. My voice not all that great after everything, but I think I can turn things around. I just really, really don't want to lose my singing. Not for vanity or anything but for myself. I love to sing to myself. And to the rats. Especially to the rats.

This morning I got a call from UNMC and....my MELD is a 13! One point higher! We're getting somewhere, slowly but surely.

Don't forget to be checking YouTube for my baby rat videos. Here's one of my favorites.

A Late Wordless Wednesday

2009-05-13T22:27:00.001-07:00

This Wordless Wednesday is coming in half and hour late. But here it is. This is a picture Gina snapped of me last week. I'm making jewelry and my room is a but untidy because I'd been sick. It's not a great picture of anything, but I like the candid-ness of it.

Harder and Harder to Breathe

2009-05-13T17:45:00.000-07:00

Yesterday I finally got some energy and so I did laundry, cleaned a couple rat cages and tidied my room (including reorganizing some drawers). Then I did a past-life regression before I went to a doctor appointment. My doctor gave me a new inhaler that's usually used for people with asthma even though I don't have asthma. I have most of the symptoms just without the wheezing. My mom has asthma.

I tried one puff of the new inhaler under the supervision on a nurse at the doc's office and then went home. Gina gave me a ride and I had to talk to her about something hard, but I believe in honesty in relationships. I was so relieved that she was calm and receptive instead of angry and defensive. I mean, I didn't know how she's react.

A few hours later my breathing got harder. I tried different positions. I tried distracting myseld with book and origami. Eventually it just got to be too much. My shoulders, arms and sides hurt, possible from the exhertion it too to get a good inhale. The weird thing is that I breathe fine, it just feels like I'm not getting any air.

I called the after-office-hours-nurse-line and the nurse told me that I needed to go to the ER right away. So,, at around 8:30 PM my mom and I left for the emergency room. When I go there one of the nurses I see a lot said, "Oh, hi! Don't tell me you're sick again! You look great!"

I thanked her. I usually have no idea how I look in health terms unless someone tells me. A lot of the time it's my sister frowning at me saying, "You look really yellow". This nurse said I looked good because I didn't have "that funky orange color you usually have".

Once I was in a room the nurse who was going to care for me recognized me and said, "You look good!" I had to laugh. Apparently I'm terribly sexy even in the thoes of suffication. Later when the doctor came in the conversation was repeated. I'm a master of deception.

I think I've said before that this has caused me trouble at school in the past. I'll complain of terrible pain to my teacher and she'll look at me and see this glowing, healthy child and so she denies me a nurse visit and files some sort of note that says I'm most likely faking my illness for attention.

At the ER I was given albuterol and another drug through one of those breathing things hooked up to oxygen. Oh how good that oxygen felt! I was sad when it was gone. My lungs were listened to and I was told they sounded crackly. Not good.

The high dose of albuterol was like an awful caffine jolt. I was shaking before and now I was shaking like a crazy person. My heart was pounding in my chest.

I had a chest x-ray that looked normal so all the doctor could come up with was that I needed to give the new inhaler time to work. I was sent home in the same condition I'd come, only this time I was shaking worse.

After hooking up a humidifier in my room and propping my head up on pillows I went to bed. It took two doses of Lorazepam and an Ambien to go to sleep, but sleep I did. Until 1:30 PM. That's Ambien for you. Well, I did wake up at 8:30 with a migraine, but I popped an Imitrx and went back to sleep. That took care of the nasty thing.

This morning the breathing was hard but the rest of the day has been good. Thank goodness! I've been praying and praying and I hope you all will, too. I don't like taking drugs and only do so as a last resort. I pray first. So let's all pray and sent good thoughts and energy towards yours truly so that I can be relieved on discomfort and not have to take any drugs. That would be nice.

It's been a beautiful day. Despite the advice of my doctors I spent a lot of time outside. Sunlight and fresh air are very important for health and it makes me feel some much cheerier and realxed being outside. For me the benefits outweigh the risks.

This evening I'm getting to go on a small outing to the bookstore. I'm bringing my inhaler, though, so don't worry...

"Blood and Guts Stuff"

2009-05-11T12:49:00.000-07:00

My nose has been bleeding all day. This does not make me happy because now I have one of those little raw, stinging spots on my nostril.

I went and got a blood test today after consulting Rayne, a brainless phlebotomist and my mother as to whether I could still go even though I had taken Imitrex. Obviously, I went. And apparently they're still taking ammonia levels on me because the guy put one of the tubes in a bad of ice. The ammonia levels tell them how badly my brain is working. And it's usually bad. At least I can still blog, right? And I know who my family is.

Oh, and outside the lab they had a cart with two boxes of masks on them and signs saying you had to wear one if you had any of the symptoms listed. Well, I had just about every symptom on there so...I wore the stupid mask. At least it kept my face warm...

I'm keeping my mask to wear when I go to the doctor's tomorrow. This is for purely selfish reasons. I don't want any of the crap other people are bringing into that office. Plus, they'd probably make me wear it anyway.

But hey, I look downright sexy in those masks. I do. Really.

After a long nap I put in another load of laundry, emptied my trash bin and puttered around on Facebook before I made a couple of medical phone calls. One was to UNMC to alert them to my incoming blood test results and also to ask them about the progress of the port issue.

You see, all of my sick friends have ports and love them. It's like an IV under the skin that you can keep for years. Hello convinence, goodbye IV pokes! I've begged and pleaded for one and now it looks like it's actually happening. The nurse at UNMC is going to email my doctor about it and then set up the surgery date.

Now, it will be risky since I'm in a pretty fragile state to go into surgery and the port has the possibility of infection, but my sick friends are either as sick as me or more so and they haven't had any problems. So I'm pretty confident about the whole thing. This port will get me through my waiting time, transplant and beyond!

I plan to spend the rest of my day doing more laundry and reading.

P.S. The title is one of Jo's lines from 'Little Women'

Overrun

2009-05-11T05:39:00.000-07:00

We've been overrun by baby rats. We're currently fostering two mothers and their litters. I'm still working on uploading some of my media, but you can have a good look on Photobucket and YouTube. The rats are being fostered for Capital City Rat Rescue.

Dreary Weather Makes for a No-Day

2009-05-10T22:27:00.000-07:00

A "No-Day". That's the best pharse/word I could come up with to describe that kind of day that feels like it didn't happen at all. Like maybe the city you live in has fallen into some crevice of space and time where the latter only floats over the surface above you, never touching you. My lack of circadium rhythums and belief that time is not linear help me cope better with the aforementioned kind of day. Still, gloomy weather doesn't help.

And gloomy weather is exactly what we got. It was horrible timing. Saturday night was the last night of the big play at Southeast High School, Little Women. My sister played the lead of Jo and her boyfriend Jay (who is a so common in our household now that I leave out Reese's Pieces for him and try to avoid his surprise attacks even when my brain tells me he's at school) played Laurie. My sister sang and acted so beautifully that even I cried. And of course, the scene where Beth dies is hard. Way too close to home. I feel sorry for my sister who had to reherse that particular scene over and over whilst I was in the hospital. Apparently it was very hard for her. She never shows this kind of emotion in front of me, of course. Except for last month when I wasn't doing very well and our neighbor had to come over to watch me. Ginny unexpectedly came up and kissed me on the head!! She's never done anything like that before in her life.

Anyway, the play was wonderful. I got to see it 2.5 times (the .5 is from where I pooped out after the first act.) I wish I could have seen every show but I've been so terribly sick lately. Low-grade fevers, chills, weakness, dizziness, aching, nausea, etc. Tomorrow I'll call the doctor. I had called Friday but I couldn't actually go to see the doctor because I was too sick and wasn't able to breathe properly. The told me to go to the emergency room, but I really wasn't in the mood. It was too nice a day to sit inside a dim, depressing ER room anyway. I eventually recupperated a little and got past the emergency stage.

So this morning I wake up and Ginny is in the kitchen making her wonderful french toast. Why this girl who had gotten home at midnight after a slew of photo calls and performances was now up at 9:30 in the morning making french toast was a mystery to me.
"Oh. My. You're up," I said.
"Yeah, um, oops; Mother's Day," she replied gesturing towards the semi-burt pieces of egg-coated bread.
"Well, you gave mom all those wonderful performances. That's gift enough," I said.

Apparently Ginny didn't think so because she had already been out to the Dollar Store and bought Mother's Day balloons. I helped set the table and position the balloons and then got out my own gifts: a wooden rose with a beautiful scent (handmade by a craftsman at Ren Faire), a lotion I had made with oils she had picked for fragrance and a foot spray I had made her using essential oils that would scent and kill off bacteria. I had also folded her laundy the day before. She said that was her favorite gift.

Although we had a nice breakfast and all that, we (especially Ginny) were all having that post-performace let down thing. So we went to Gordman's and Ginny and each bought a bra. But not fun bras. Plain black ones.

Then we went to Gateway Mall and looked at a store or two (I spent most of my time hovering around the bead kiosk where the lady tried to hire me for the shop since I already did beadwork. I bought amazonite earrings instead). Then we ate lunch in the food court and got cookies for tea time with Gramma, whom I gave my other wood rose. At tea I tried to sit up and be present. I had brought origami paper and baby rats yet I still wound up curled up on the couch and soon realized I felt exactly like I had when my hemoglobin was so low I needed a blood transfusion.

So I went home, read a little and somehow fell asleep in my recliner. When I woke up we were figuring out dinner. Ginny and Jay decided to go to Culvers and get us food while mom and I finally went and got my rice crackers and some fun drinks. When I put the first cracker in my mouth I knew things would be okay in the coming week. Those little seaweed-encrusted things have prophetic power.

At home the four of us engaged in some hilarious conversation about dreams which brighted my mood a little.

Jay bought my mom some of her favorite candy bars. Earlier my mom had let Jay have one of her balloons so he would have something to give him mom. Silly boy.

So now I have some lovely drugs in my body and I've lit candles and my room is peaceful. Maybe tomorrow will be a better day. It shall start with a bloodtest.

One Of Those Questionaire Majigs.

2009-05-10T20:39:00.000-07:00

Okay, so Rayne is too shy to tag people so I am officially volunteering to do this...thing. Whatever it is you call it. And I probably won't tag anyone except possibly Gina, so anyone feel free to keep the ball rolling.

1. What are your current obsessions?
Doreen Virtue books, making gemstone and hemp jewelry, baby rats and feeling better

2. Which item from your wardrobe do you wear most often? sweatpants. Yeah, I know, I'm a loser.

3. Last dream you had? About my sister performing in all these different plays and then one where I was forced to throw up, but couldn't so I ate lavender & vanilla ice cream instead.

4. Last thing you bought? Amazonite earrings!

5. Do you sleep with a stuffed animal? Yes. I sleep with my big giant Ugly Doll named Moxie. She's good to hold against my tummy when I hurt.

6. If you were a god/goddess who would you be? Goddess of Rats and Healing Miracles. I'd help rat owners and rats through all their hard times and also miraculously heal (or at least make comfortable and happy) the rats and all people. And maybe I'd sprint around in Faerie, too.

7. Favourite holiday spots? Rayne's house. Vienna, Virginia. I don't travel much...

8. Reading right now? Angel Medicine by Doreen Virtue and Odd Thomas by Dean Koontz (lent to me by Rayne who insisted I'd like it. And I do!)

9. Four words to describe yourself. Ow. Spiritual hippie. Optimist.

10. Guilty pleasure? frozen coffee beans and small, crunchable ice cubes.

11. Who or what makes you laugh until you’re weak? Mystery Science Theatre 3000

12. Favourite spring thing to do? Coverse with nature. Lay outside with a good book. Getting high on lilacs and tulips.

13. When you die, what would you like people to say about you at your funeral? That I was kind and compassionate and an inspirtation to everyone. I really hope people cry. Right now I mostly get groans of "Oh, God, I don't have time to take you to the ER!"

14. Best thing you ate or drank lately? Rice Crackers. I had to wait, like 3 or 4 days to finally get more.

15. When did you last go for a night out? Last night, I guess. I went to see my sister's play...

16. Do you miss vinyl? (Old album format) I wasn't really around for that but I do like vinyl.

17. Care to share some wisdom? It really isn't worth getting angry or bitter over things. It only makes you feel worse.

18. Song you can’t get out of your head? Various songs from 'Little Women' (the play my sister starred in).

19. Thing you are looking forward to? Feeling better. Getting some things done.

20. Which disease or condition would you most like to see eradicated? I would just like for there to be no need for organ transplants.

21. What is your most irrational fear? Drowing in the sea. I mean, I live in Nebraska...

22. Who are your favourite comedians? Jim Gaffigan, Russell Peters and all the guys from MST3K

23. If you could 'beam' yourself to anywhere for half and hour and return home safely, where would you go? Atlantis. Crystal healing beds, here I come!

24. If you had a/another daughter, what would you name her? Mollie. After my mom and Gramma.

Rules of the game. Respond and rework. Answer questions on your own blog. Replace one question. Add one question. Tag 6 people.

A New Blog

2009-05-05T12:56:00.001-07:00

Since Google ate my last blog I've created a new one. Yay for me.