Ana & Isa’s Blog
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Tuesday, 01 March 2011
My Truth
Posted by Ana
Happy March 1st! I’ve almost survived another winter and the blooming blossoms in the Bay Area remind me that spring is dawning soon.
I had a conversation the other day with Isa about why I don’t blog more often. My response? Well, we haven’t travelled much since we are in our winter hibernation so there is not much to blog about. Her response was that blogging is not just about our travels so I should write about other things. Personally I’m not sure if anyone really cares so I keep quite. Plus a big factor is that I work in front of a computer at work and the last thing I want to do at home at night is get back in front of one. If I did, I’d rather blog because I want to, not because I have to.
I had to think about all these excuses further. Why do I not blog more often? Time ? Energy? A humbling feeling that people really don’t need to hear more about us? Maybe my excuses include a little of everything. But truthfully not a lot has been going on. I‘m working as a prenatal genetic counselor every day, so I can tell you all about the interesting birth defects and pregnancy stories I am hearing. I can tell you about the diabetic pregnant lady who doesn’t take care of herself and had her second baby born with birth defects (it’s called diabetic embryopathy), or the 54 year old single woman who bought an embryo to have a baby by IVF, or the homeless woman on drugs with 8 kids in foster care who was referred for genetic counseling for an amniocentesis because she is 40 and has a 2% risk of Down syndrome (truthfully, I think that is the least of her problems).
And of course there is the ongoing drama of my own health, which I am more hesitant to share publicly. With the book and film, I feel pressured to have to live up to some sort of public image of health, strength, leadership, passion and to some extent invincibility, but truthfully, behind the blog post is my day-to-day struggle with intestinal issues, progressive chest tightness, chronic pain, and the ensuing anxiety and depression that comes with that. But do people reading our blog really want to hear about the truth? Not really but… sorry to break it to you, but life with transplant is not all about picture perfect health and climbing mountains, winning medals at the Games, traveling to foreign lands and achieving great milestones like marriage and the like. I go to Stanford Hospital almost every day –either for work or medical appointments.
The good news is that with the cumulative prescription load of 10 medications for my intestines, my 2 years of hell with pancreatic enzyme resistance seems to be over and I am much better with digestion. I can eat normally again and my love for food has returned. I may have even gained some weight! : ) Yeah!Still, right now I am in what my friend Kriss called “limbo hell” – a state of health where you know something is wrong but no one has answers to what it is. My lung function has dropped since November, and I’ve been on several courses of antibiotics to treat whatever, even if two sputum cultures have been negative. I get increasingly tight with exercise and have less mojo than before. Deep down I fear that this is chronic rejection. I hope to God I am wrong; but if it is, I pray it will be slow to progress. Chronic rejection is difficult to diagnose, has no treatment and is a process of progressive suffocation. Basically you’re fucked if you have it. Of course if I have the big R, my whole world will turn upside down and it tears me up just thinking about it. Hopefully I’m jumping the gun, but having had this experience before, I am having a strong de ja vu feeling in my lungs.
So that is my reality right now. Maybe it’s time to put down the self imposed fascade that the Stenzels are out to be some sort of cream of the crop transplant poster women and be truthful – that life is not easy, that life is full of setbacks and anxieties, and that sometimes I, too, want to just lay on the couch and BE sick because I FEEL sick. But despite all this, I still find joy- being with Rupie, creating scrapbooks from all the crazy trips we took in 2010, cooking a great meal, listening to music and being with friends and family. And I try to keep perspective as I witness my transplant friends going through a hell of a lot more challenges that I am.
My dear friend Barb died last week after a long battle with chronic rejection. Barb was half Japanese and received a lung transplant in 2002. She was one of the most loving and spiritual women I knew and she faced her struggles with rejection with such grace, acceptance and faith. She had a bucket list and strived to fulfill as much on that list as she could. Even while on hospice, she cruised to Alaska and went to Disneyland for a private tour of Walt’s VIP apartment. Her emails were always full of concern for others and faith in God, rather than moaning about her own misery , which she had plenty of. After dealing with rejection for over 5 years, may she rest in peace. Osukaresama, as we Japanese would say. This means something like, “may the tired finally rest.” However my own health unfolds at least I will look up to people like Barb who have taught me so much about living and dying gracefully with God at your side.
I hope the much anticipated film release will not be complicated by my health as this whole film endeavor seems to ride on our image of twinness, and being symbols of health and “advocacy.” The film, too, will unfold as it is meant to. Just to answer the inquiries of the curious, so far the Power of Two worker bees are buzzing frantically planning a film festival and distribution plan that will produce as much honey as possible.
The future will tell me what will be and I have to just trust and pray. Pardon the woe-is-me blogging but this is my mindset today. Tomorrow will be another day.Thanks for your friendship and for taking the time to read this blog. Hugs and health to all…
ANA
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Monday, 07 February 2011
My Re-birthday:7 Years Older… 2-6-11
Posted by Isa
Dear friends,
I hope this post finds you well. It has been over a month since I’ve written, and as much as I enjoy writing, it seems that the days just escape me. I have much to...
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Sunday, 09 January 2011
1-8-11 We made it! Happy Birthday to Ana! By Isa
Posted by Isa
Dear Friends,
I hope you are all recovering from the holidays and staying virus free! If you are like me, you returned from the holidays to an inbox full of messages that made the last week seem...
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Tuesday, 28 December 2010
Christmas Viruses and Miracles 12-28-10
Posted by Isa
Dear Friends,
Thank you for taking time to read this blog. We hope you have had some relaxation and time off from your routine to enjoy Christmas. We are in the tail end of 2010, a time...
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Thursday, 23 December 2010
Holiday Ramblings
Posted by Ana
“Happy holidays, season’s greetings, Merry Christmas to all! May peace, joy and love be with you this time of year.”
As I’m reading my holiday cards, I see these messages all around. But what do these really...
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Friday, 17 December 2010
12/17/10 Through the Years We’ll Always Be Together
Posted by Isa
Dear Friends,
Thank you so much for taking the time during this hectic season to read our blog. I’m so touched by your interest.
I hope you’ve been in good health and enjoying the wet and cold weather....