Monday, November 11, 2013

Some Progress, Some Hits, Some Misses


It’s been a few months since I posted anything to my blog. In that time I have experienced a number of changes, some progress, some falling back. But on my last post I stated that I had accepted where I was with my liver disease, PSC. And was happy about it. That was in late June this year.

Now nearly six months later I can say I’ve learned a lot, I’ve been up and I’ve been down, I have new energy that I didn’t know I’d ever experience again, and I’ve been trying new treatments that are working. The progress with acupuncture and a new psychotherapist has had its fits and starts, but it’s working.

I found an acupuncturist, quite serendipitously, who specializes in sleeping problems. Sleep was one of my biggest challenges because for close to a year all I was able to sleep at night was three to five hours. It clearly wasn’t enough and I had problems functioning at all. Emotionally it burned me up inside. There seemed to be no solution to it. Then I met Damiana Corca at a Meetup in Boulder, discovered she was not only an acupuncturist but one who specialized in sleep, and within just two or three weeks after going to her office for treatment, I was able to sleep six to seven hours a night. That was an absolute miracle for me! And I felt the differences in my daily life immediately as that kind of sleep became the norm for me over the next several weeks, then months. Damiana’s goal is for me to be able to sleep eight hours a night all the time.

In reaching for the goal of eight hours of sleep nightly, I discovered some things about myself, my new self as a person with a serious illness. I worried a lot – about nearly everything – and it woke me up at night and could keep me up for a few hours, too.

What is worry? Fretting over something and trying to control it (let’s say money is a good example of “it”) rather than choosing to have faith that it would work out one way or another. I could see (even though I didn’t want to) that I had little control over the outcome or the unfolding of events. I have had to learn to hold certain ideas and concepts in my head and heart and return to them over and over during the day. And especially at night when I am vulnerable to negativity and sadness returning to me.  

I have to let go of outcomes. I have to lose control and see how senseless it is to believe I can control everything, and I mean Every Thing.  I am learning to meditate, especially when I think I don’t have time for it. I am learning to go to bed with an emptied head.

Oh, I don’t succeed on all of those things all of the time. I can let go of outcomes, but there remains a stubborn shred of me that wants what I want. Deep down, I hold onto an incredibly strong belief that if I lose control the whole world will fall apart. Me. Holding the earth together. Right. As for meditation, thank goodness for Pema Chödrön and her instruction to just say “thinking” when thoughts intrude in my attempts to meditate.

I have been working part-time as a writing tutor again. Dressing up (sort of) and driving to work seems foreign to me after not having done that for more than three years. I’m also writing more as a freelancer. This is good. It’s all good. Because it says to me, “You are healthy enough and have enough energy to work more now.” And I feel a sense of accomplishment in being able to say, “I’ll be there, on time, and produce,” and then showing up. On time. And producing the work. I’m making progress, step by little step.

I recently had a brush with the medical world that brought nearly everything crashing down that I’d achieved over the past several months. But I believe that’s another blog post.



Thursday, June 27, 2013

How I Changed My Attitude

To change my attitude (without wanting to) things had to get pretty bad for me. Go as low as you can. There’s motivation down there. I was motivated, despite my pride, to look for and ask for help – in some obvious places and then eventually in any place I could possibly look. Desperation reigns for awhile. Then suddenly, though of course it wasn’t sudden at all but mind-numbing work, there’s a break, a shift, some response from the Universe, God, whoever to your now not-so-subtle, deafening cries for help. Once the first help shows up, serendipitously it seems (but you know it was meant to come), there seems to be a flood of support.

You soak up the support and you cry a lot from the grief and sadness of your search, and then just pure relief. One day the tears stop and you find yourself happy and satisfied on a nearly daily basis.

At that point, you’re ready to change your attitude. From what to what you don’t know. You just know you can handle and really want that change to happen. And of course the shift has already happened.

My shift came when I accepted my life the way it was. Oh yeah, I have always wanted to improve me, my life. But my bigger challenge was acceptance. And not seeing it as giving up. I accepted my life and me as is, and I began to live each day as its own entity. Not as part of a trend or a pattern, something as a young musician and voracious reader I was always seeking. Just making the most (or least) of what was in front of me.

If I feel especially tired one day, I rest a lot. If I feel energetic, I try to accomplish a few things (not a ton of things, just a do-able chunk).

I got beat the hell up getting to this place. And I also accomplished a lot in getting here, too. And then finally I learned how to let go of long-held desires and expectations of myself. Breathing in the expectations and truly letting them go.

I won’t go into a lot of details here now. I feel like I’ve been writing that story years now. The marking this past May of my 8th anniversary of liver disease dismantled all my defenses. The actual day actually slipped by me unnoticed. Then I began to see the struggles of this past year, and all the pent-up frustration, sadness, and loss for a long time rolled itself into a huge ball I could now fully see. I didn’t want to drag that ball behind me any longer. It was baggage and it held nothing for me to learn from anymore.

It’s gone now, that colorful historical ball, and now each day is fresh, new, another chance to live fully, with or without illness.


Thursday, April 4, 2013

Life With a Terminal Illness

 
I’m trying to find a live liver donor who would be willing to put his or her life on the line for my life. My life is going nowhere at this point. Just downhill. I don’t like to think about it.

I beat all my records this morning. I thought I was getting up at 2:15 am (bad enough, right?), but it was 1:30 when I sat down to write. That means after all the fatigue I had yesterday, the naps I took (about 2-1/2 hours) which usually ensure a restful night, I slept all of 3 hours last night. Hell, it’s still night!
Now what? I usually feel tired when I get up, even at 4 am sometimes, but this morning I feel…rested. How can that be? I feel frustrated because there’s no one to call, I can’t write in my notebook, I’m not interested in reading anymore, and I’m just listening to rainstorms and birds singing on my iPod dock and watching my candle glitter in the semi-darkness.
I like getting up in the dark. I’ve been doing it since 1992 when I began writing every morning. Put my coffee on a timer, got up at 4:30 am without an alarm (except the one going off inside me), lit a candle, put on a tape of writing prompts and listened for about 5 minutes, then wrote for at least an hour. Sometimes I also began by doing some artwork with colored pencils and rubber stamps.
Now, with liver disease, and steadily increasing hepatic encephalopathy (HE), I am not interested in cognitive thinking, or even in writing poetry most mornings. My handwriting has also deteriorated and is quite difficult for me. I can still write on the computer.
I don’t like the progression of this liver disease I’ve had for 7 years now. I never expected something like HE. What do I want for my birthday, for Christmas? A new liver. A new chance at life. That’s what I think about a lot. 

I’d rather be finishing Anna Karenina (about halfway through now) and reading more poetry. And I want to be writing and expressing myself. I feel like I express myself only halfway.

The other day I went to see a psychiatrist. What I’m going through now with facing down a terminal illness is the hardest thing I’ve ever done. None of it is getting easier. People find it hard to believe that I feel happy. But except for my recent “battle” with Social Security, I do feel happy every day and I make plans for my future. I plan on living. That’s the bottomline. I just want my life to have a better quality now and in the future for a long, long time.
First things first – I want to sleep longer at night. At least 6 or 7 hours. That would be really nice. And not have to nap during the day.
I want my handwriting back. Whatever that takes.
I want to make money from working. Working hard. I like it.
I want to work as a freelance writer and editor.
I want to hike and stay up till 10 pm, not just because I’m delaying going to bed so I can sleep later, but just because it’s normal for me.
I want my lively, active, dancing writing reading walking hiking life back. I don’t want to die while waiting for a transplant. I am, admittedly, afraid deep down inside.

I never ask for this: I’m asking you to pray for me. A simple prayer – Help Dana. Please. Thank you. And thank you.

Saturday, March 9, 2013

"Hard Times," the Beat by Social Security


I’ve been having a hard time lately. Since the first week of January. It started with a letter from Social Security (SSA), an agency that has become my nemesis, my worst nightmare. They sent me notice that I had been denied a benefit that I’d had for about three years, maybe more.
As I read through the five-pager I  especially noticed page four, the one with the calculations of my income and then showing the income limit allowed for the benefit. I looked at it and looked at it. Questioned every figure. Then I noticed the parentheses around two significant figures…and that SSA had added them in instead of subtracting them.
I groaned. I moaned. I felt like screaming. But I didn’t want the police coming over. I just wanted SSA to fix their mistake and allow me the benefit.
It’s not that easy (of course).
Okay, what was the benefit? Help with my medication costs. Turns out it means they mostly just pay your insurance premium for your prescription insurance. This turns out to be a very big deal, though, because you can get a much better plan, with a relatively high premium and maybe no deductible. A Big Deal.
I didn’t know this important factoid about Extra Help with Medications, so I picked a very low premium and a costly deductible. Well, crap.
I have a very expensive drug that I only paid $6.30 a month last year – because I had a very good prescription plan AND Extra Help from SSA. This year, with this new plan and no Extra Help (though it wouldn’t have really helped the cost much) my monthly copay was going to be $348. Yowza! Now what am I going to do?
I started dancing, that’s what. I went to every source of help I could think of including beginning with the Financial Counselor at University of Colorado Hospital because she’s so smart and she could advise me to do something. I was willing to do anything.
This expensive drug (retail: $1393/month) was keeping me going cognitively, staying independent, being able to drive, shop, cook, and work. Everything.
I was scared. Never this scared before in what began to seem like maybe a long-enough life.
Every single business day in January I was attempting some new plan, some new idea, something, anything, everything. And nothing, I mean absolutely nothing worked. In mid-January I ran out of the drug and started to panic. Two weeks later, by about January 28, I was a complete basket case and spent a lot of time crying.
What followed that, on January 30 and 31, is another chapter and I’ll write it and post it in a couple of days.
At about mid-January my nephew Jay Rowden, who lives in Chester, New Hampshire, contacted me to offer some help. Wow. Someone was going to help me. And he was great at it. First, he told me to contact my Congressional Representative. Diana DeGette. I liked her and had always voted for her. She was a good and decent Democratic representative for her district. Her office in Denver started helping me and filed a Congressional Inquiry into the matter with SSA. 

Jay would contact me every day by phone or text, check on progress, do more research. He was relentless, persistent, sweet, kind and funny. Like he’s always been. Always.
The phone conference with SSA is coming up in just a week and a half, March 20. What’s so bloomin’ strange about the whole thing is this:  SSA made the mistake; why couldn’t they just correct it, send me a letter in a couple of weeks, and we move on? They don’t do things that way. Anyone who has to deal with the agency – senior, disabled, sick – knows this after a few transactions with them. Or maybe just one.
Last week I started taking an antidepressant. I didn’t want to. But damn, it really is working. (Yeah, it’s a strong, atypical one.) And have a therapy appointment on April 1st. I don’t want to do that either. I’ve had enough therapy. But talk therapy works the best with me.
I have a lot of anger, frustration, and sadness to work through.

Friday, February 22, 2013

Adventurous Reading: The Story of a Woman and Her Liver

     You have probably never gotten a message like this. This is for you, my personal reader. Hang in there for some adventurous reading.

     I am on the Liver Transplant List at the University of Colorado Hospital (UCH). I’ve had a liver disease for 7 years now. And now I’m pretty sick from it. But not sick enough, by the numbers on 3 blood tests, to be anywhere near the top of list. Very low, in fact. UCH has one of the longest liver transplant lists in the US – 500 people. And they only did 82 transplants in 2012. 
     I was diagnosed with Primary Sclerosing Cholangitis (PSC), an autoimmune disorder of the bile ducts. It is not caused by alcoholism. You might have heard of it – it’s the disease that took the life of football player Walter Payton a few years ago. But you may also have heard of Chris Klug, Olympic snowboarder, who had the same disease and became the first medalist competing and winning after an organ transplant. People do survive this stuff and I plan to be one of them!
Happy Days in Buenos Aires!
    If you want more of an explanation of PSC, I can give it to you or you can Google it.
    I am now searching for someone who would be willing to take this very big step: to offer to be a potential live donor for me. It’s "potential" because there's a rigorous evaluation of your health and even your mental state (am I forcing you? etc. etc.) to check for a match. The process begins with your phone call to the Transplant Coordinator at UCH. She interviews you and you ask questions, as many as you want. From there, blood tests are ordered and if those come out well, there is a trip to Denver for surgical and psych evaluation.  
    My insurance pays for everything for both of us – testing, surgery, hospitalization. I would pay for your airfares and reimburse you and your caregiver for a large portion of the 2-3 week stay in Denver post-surgery. The docs have to check you out frequently during that time to make sure you’re doing okay. I can’t reimburse you for all your costs – like possible lost pay or childcare costs. But there is an organization that provides financial help to donors, if you qualify. How cool is that?
    If at any point in the process towards surgery you decide you don't want to have the surgery – even at the point of being wheeled to the operating room – you just say "I've changed my mind" – and that's the end of it. You get your clothes back and head for home. This is how I'd want it if I were you, and this is how I want it for you.  
    Here are some basic compatibilities to know before you grab a phone and tell me YES! –
      O type blood (+ or -)
      Ages 18-45 preferred, accepting up to age 55
     Small body size - my doctor calls me "petite" and I need a smallish liver to share (man or woman), though it's possible they may just take a smaller portion of your liver
     General good health, no smoking or excessive drinking, no previous abdominal surgery
     Ability to spend up to 3 or 4 months in recovery. (You’d be able to go back to work after about a month, though!)
      Recovery includes 5 to 7 days at the hospital and a couple of weeks in Denver and followed by the doctors at UCH. Then probably 3 plus/minus months to allow your liver to regenerate. Yes! Your liver grows back, and the portion you’ve given to me grows out to full size. That’s why LDLT works.
    What I'm really asking you for is a second chance at life with my health back. I have friends who have been transplanted and they are thrilled with their lives and ever-so-grateful for the research that brought them new life, and filled with undying gratitude to the people who donated their organs, either after death or as a live donor. 
    I have watched Youtube videos of live donors and they describe a very easy process, quick recovery, and luck...plus a deep sense of fulfillment from helping out someone in need. Here’s one that’s kind of nice –

    Remember, you're a "potential" live donor until the hospital's team of professionals decides it is or is not a match. And you, of course, have freedom of choice to change your mind all along the way.  
    Thank you for reading this. You may write in the Comments section if you have more questions and I will get right back to you.   

My best wishes and armloads of gratitude to you,  

Dana

P.S. If you can’t do this or don’t want to do it, will you pretty please forward this on to friends of yours who may be interested? Just send them this link – http://danabeesvoice.blogspot.com/2013_02_01_archive.html

Wednesday, January 9, 2013

Looking Good

-->
Whatever you do, don’t get sick
and continue to look good.
First, you will frighten others who
think they could be sick,
even frighten them away.
Second, you may find yourself acting sick to
convince the non-believers.
Third, no one thinks you need help.
You look good.
On the other hand, be glad to look good,
know your doctors believe
your diagnostic test results.
Understand those who love you
won’t leave.

–from Postcard Poetry Fest 2012

Friday, December 28, 2012

Creative Ways to Celebrate the Holiday Season



Stephanie Van Belle, a new friend of mine on Facebook with a young family of four children, wrote her own Advent Calendar. I didn’t see the first posting of it at the beginning of December, but was thrilled last week to go through all the pictures she’d taken through the season as each of the activities were completed.

It’s not one of those open-a-window-everyday calendars while you gaze at a pretty Christmas scene or think about something written for that day. It’s an Advent Activity Calendar that calls on you to experience the spirit of generosity surrounding the Christmas season.

I copied it all down, but sharing Stephanie’s list exactly is not the same as creating activities that fit you, an individual, a family member – mom, dad or sibling, or a community member.

Stephanie’s idea grew out of her need to dig deeper into the meaning of Christmas – or Chanukah or whatever you celebrate, religious or otherwise. She felt the core value of the season was generosity and most of her activities ask her children to look outside themselves to teachers and office staff at school, to neighbors, to someone who may need a kind word or a thoughtful gesture, to community workers (they chose a station house of Flagstaff firefighters), and even to the environment to extend their generosity there (picking up trash in a favorite park and spending time in the park one afternoon).

I like that her first activity was attending a concert celebrating the season. In Flagstaff, Arizona where Stephanie and her young family live, there is a Nutcracker Lollipop Performance they attended. You can find a version of "The Nutcracker Suite," whether in ballet or concert version, or a band or orchestra or choir performing seasonal music. It really starts the celebrating off with something that reaches into all our hearts and spirits in every language: music.

From there, they look for the neighbor with the nicest house decorations and leave an anonymous thank you card and candy canes, to teachers and helpers and making them gifts, to fellow classmates for whom they make simple gifts to give to all, to a child in need for whom they dig into their piggy banks and go to Goodwill or a dollar store and buy a gift and wrap for them, to choosing a child or more than just one who needs more love (like one or several in a hospital) and making them gifts and cards.

Another special element to Stephanie’s list is the inclusion of family traditions. Her husband Gerard is Dutch and they call the jolly bearded man Sinterklaas. One of the deeds they perform for Sinterklaas is to gather plain wooden clogs for each family member and decorate them colorfully and fill them with goodies, like a little wooden stocking. The children decorated these early in the month so they could gather his spirit into the house and be ready for his arrival.

Is your family from a country where they call Santa Claus something else? Did you have some activities you always included – maybe all sitting down together to address Christmas cards, or singing carols in the neighborhood, or donating time at a community center to serve meals or help others in need? Include that on your list, too. And create some new ones.

You don’t have to go to the store to buy this Advent Activity Calendar! It’s in your heart and your memories and in your own very special concept of what Christmas (or whatever you call it) really means to you. You can now make your own list and enjoy the activities yourself and you can share that with others, even friends and neighbors. Let them in on your creative fun.

Stephanie types up a list and numbers the days and activities, then she cuts the big piece of paper into separate strips so the exploits for the day are revealed when that day arrives.

I ended up having a very special Christmas season this year. I just changed my mind about it. It was much more about giving than receiving. While it is good to learn how to receive things with an open heart and mind, it is the best fun when you are the one giving, however small that gift may seem to you.

I thanked my liver doctor and her nurse this year because they have given so much and so willingly to me over the years. I still have thank-yous for my pharmacy team because they see me every week and go out of their way to help me. And then there is my oncologist who has listened to my tales of woe and my triumphs over the past year with great patience, along with his very special nurse practitioner. My internist and his staff deserve special thanks because he’s such an incredible and caring doctor, and he receives and answers emails from me on any topic in just a few hours. There are others, too, who deserve my special gratitude.

A very special thank you right now goes to my friend Adrienne Baker who introduced me to Stephanie. Those two have been friends for decades and truly love each other. So, thank you, Adrienne, for introducing and sharing your friend Stephanie Van Belle with me.

Who is special in your life all year long? Who does things for you that you take for granted or who you are grateful for when they aren’t around to thank? This is your special time to shine some light on that person and let them know you do notice, all year.

As an early reminder to you next year, I promise to re-post this blog after Thanksgiving next year so you can create and experience a new and custom-made holiday season for yourself, your loved ones, neighbors and community workers.

Have a wonderful year in 2013!