So, I’m going to start making short videos on what we’re doing to plan for the documentary. It’s turning out to be a LOT of work, but it’s also really fun. So many people have contacted me with ideas, and I appreciate that a lot.
Here is episode 1:
[youtube=http://www.youtube.com/watch?v=az2QcbmEVuA&feature=youtu.be]
We are both chomping at the bit, excited to promote and get the word out there on our project.
I’m a bit of a perfectionist, though, and have to get all the foundation built before I start really going for sponsors and creating fundraising events. Have you ever done an IMDB bio? It. Sucks. I’m glad there are hoops to jump through to prevent garbage and spam, but needing a URL to prove someone’s birth date is just a pain in the ass. Maybe I’m missing something. I don’t know. I need to get Jimmy’s updated, mine, and create one for the film. My head is spinning.
I bought a journal to keep lists of ideas, our progress, etc. Wouldn’t it be cool to sell a copy of it if we actually CAN sell the film? Maybe I am jumping ahead of myself, but like I said, I need all my ducks in a row. I don’t like egg on my face.
I’ve been getting a lot of ideas from friends on things from fundraisers to different film festivals. If you have any ideas, I created a Gmail account today for the film: socialmediastolemykidney@gmail.com. I’m so glad I didn’t have to shorten that!
Tonight, we work again. I’ll make a short video on what we’re doing to post on YouTube. Oh, I also made a YouTube account for the film. I’m getting ridiculous, but I want it to be professional. After so many years in comedy and radio, I’ve seen so much that just made me say “Blech.” I don’t want people to see something half-assed.
After all, I lost a kidney for this!
Today, we’re celebrating a year since I donated my kidney to TinyMom. Thankfully, I didn’t hear anyone say “Would you shut up about your publicity stunt already?” today. It’s been amazingly supportive, to say the least. I’m overwhelmed.
I will not shut up about it. Ever. Just knowing that there’s a woman donating next month because of ME, gives me the motivation to keep going. She’s been following me on Twitter for over a year. I’m so glad that we were so vocal about it, because it’s saving another life.
The past year has changed me in a major way. Physically, I’m 100% back to normal. I have been for several months. Most of the scar tissue is gone and my clothes from last summer fit me better. I’m not tired anymore, though a nap has become a habit that I can take advantage of because I work from home.
The biggest change has been…my heart. I’ve seen people show me love who didn’t even know me. I’ve met people who are so gracious and kind, I cannot help but love them.
It’s almost as if they had to get rid of the walls I’d put up for so many years to dig inside me and pull my kidney out. I woke up in the recovery room the same person in almost every way, except for my ability to love. Learning who your real friends are isn’t easy. I still hurt, knowing the people I had expected to be there simply disappeared from my life. It’s still raw, over a year later, but then I look to who I have in my life now.
I walked through the world with a smirk on my face, knowing that most of it was a facade of who people really were. I held on to negative feelings for longer than I should have. I’ve always been a positive person, but there were some things that popped a hole in my smiley balloon more than once. I survived emotionally by putting a brick wall over that facade.
Now, I see people differently. I notice the things that most people wouldn’t. I believe in people more, too. Quirks are more acceptable because I have them, too, and wouldn’t want to be judged for them.
Having an open heart means that my feelings are more intense than most people’s. I’m more passionate about my feelings, beliefs, whatever. I let them be known.
You never know if you’re going to be here tomorrow. You need to make the best of today. Make today the best day ever. Tell people how you feel. Give that hug you’re longing to give. You’d be surprised how receptive people are, when you could have had serious doubts.
Love people. Love your neighbors. Love your friends. Love your lovers. Love a good burger. Love that TV show.
Never be afraid to show that love. To prove that love. To show people they’re special to you. Even if it’s not taken the way you want, you did it. You did something that pushed your comfort level, but that made you stronger. That made the other person think. Even a tiny thing could make that person’s day and keep them thinking about you for more than thirty seconds.
Follow your dreams. Owning my own business has always been a dream. I kind of got forced to do it, but it’s the most comfortable thing I’ve ever done in my life. There’s a lot to learn, but it’s easy. It’s coming. It’s happening. I’m my own boss. I can’t get fired. Hahahahaha!
After you read this, give someone a compliment. Mean it. “Nice tie” is fine. You don’t have to do anything major. Just. Do. It. They’ll feel good that you did, but you’ll feel even better.
Stop worrying about what others think of you. It doesn’t matter. You are who you are and should never change to accommodate someone else. That’s unfair to everyone involved. If they don’t accept you for who you are, who’s losing out? Not you. Be yourself. Do you.
Support those businesses in your community. Go to a locally-owned restaurant for a change. The extra $5 you spend there will give you better food and help a business that doesn’t have corporate backing. That money goes to THEM. Find a gift shop and buy something for your Mom there, instead of going to a megastore. They will appreciate your $10 more than WalMart.
Take your dog for a walk. We’re all busy, but think about what that beast does when you get home from work. They’re excited to see you, loyal to you no matter what your mood. Show your appreciation with a walk around the block in the evening or first thing in the morning. Dexter deserves it every day, even though there are times I just want to be lazy. What he’s given me is worth 15 minutes out of my day to make him happy.
Say thank you. I’ve been doing it for several days, because it reminds me of who’s important, but also makes people feel appreciated. I want people to know they’re important. You’ll make their day, I promise.
Fill out the donor card on your driver’s license. We don’t always think about that. I’ve always done it, and I really don’t know why. It always just seemed like the right thing to do. It is. When my cousin died in May, my family donated everything they could. Six lives were saved. SIX. Doesn’t it feel good to know that some day, you’re going to save six lives by doing absolutely nothing? How cool is that?
Talk about it. Things don’t happen by thinking about it. It happens when you talk about it. Create awareness. Show your passion. Spread the word. Nobody else is going to do it for you.
Thank you.
I love you.
Cripes, it’s been over a year since I volunteered to donate my kidney. In 5 weeks, it will be a year since the surgery. You’d think everything would be dead & gone, moving on, etc.
Nope.
Woke up this morning to see so many other donors and families of donors posting on Facebook about National Kidney Day and I cried. Twice.
It’s been a roller coaster of a year. Mostly good, but there were some pretty deep lows, too. Losing my job, my uncle dying the day before the surgery, my cousin killing herself a month after. I had a lot to deal with at the time and couldn’t have gotten through it without my family and friends, especially Kirti.
It’s funny that we had only met once when I agreed to begin the testing. And once I started the process, there really wasn’t anyone I could talk to about it all, except for her. The medical terminology, the publicity, the surgery, etc. She super-educated herself on everything to help out TinyMom, but I think it helped me ever more.
We’re starting to plan the one-year Kidneyversary party. A venue is donating the facility. Bands volunteering to play. Chefs wanting to bring food. It’s overwhelming, the amount of love and support people are showing. Many of them, I had never met until a year ago, when the fundraisers started.
So, it will be a crying day. Fuck, I could use a giant hug.
The past few days, I’ve seen some things said about community. Or lack of it. People who don’t feel a sense of community are usually those who don’t deserve it. You have to be a good person for a community to envelope you. You have to GIVE to get.
Living in CenPho for 6 years now, I’ve always felt a sense of community. Familiar faces in the grocery store, the cashier at the local mini-mart, and groups like Yelp have shown me what community it. Out of that, I’ve become involved in branches that stem off everything else.
In comedy, there are a few different communities. There is a LOT of drama, but I’ve found a niche of people I enjoy performing with/for and I consider that a community.
Yelp has to be the first real community I have become involved in since moving to Phoenix 9 years ago. I’ve been a Yelper for 5 years now and have met some amazing people. During the kidney testing & surgery, Yelpers who I had never met came to fundraisers. The Community Managers showed support by helping to promote our events. Why? Because it’s a great community. Sure, there are assholes in that community, but does 1% really matter against 99%? Nope.
Facebook has shown me community as well. I’ve been getting friend requests from other kidney donors for the past several months. We’ve built a community by sharing ideas on aftercare, things to be aware of, and giving each other a pat on the back. It wasn’t an easy thing to do, but to have support from perfect strangers with the bond of saving another life built another community.
I’ve never been to India and I am not a religious person, but thoughts and prayers were sent my way. Hinduism is a very spiritual religion and I felt it, from a billion people, from half a planet away. Community.
And then there’s the monster community-builder for me: Twitter. Getting messages & follows from people around the world who heard our story, just because they wanted to show support to a stranger who did a good deed. You don’t have to donate money to our cause to show support. Showing up at a fundraiser and enjoying good food & entertainment are support enough. Believe me, seeing a friendly face made me get through terrible days more than once. Random, anonymous donations came in. How could it NOT be a community???
And then, there is Phoenix, and most importantly, the group of food enthusiasts & restaurant owners who came out in droves to show what community is. A restaurant I had never eaten at brought me food the day after I got out of the hospital. Three restaurants donated proceeds to our cause, and they didn’t have to. It’s a tough economy and the F & B industry is suffering, yet these people felt they had to do something. Countless products & gift certificates have been donated. By people I don’t even know personally.
As I write this, I am crying so hard I can barely see the screen. If it weren’t for ALL the communities I am so freaking lucky to be a part of, I wouldn’t have gotten through everything. It was an incredibly tough journey & I had to hide a lot of the pain so that my new brown family didn’t have to feel badly. My healing process was cut very short because of one thing: community.
So, if you feel there is no sense of community out there, you need to take a look at yourself. Blaming the outside world, constantly, is just proof that you have no idea what community is and you probably don’t deserve to be a part of it.
Community.
I have been so busy the past month or so that I’ve let my blog sit idle for too long! Bad, Amy. Bad!
So, Tuesday was the 90-day anniversary of me donating my kidney to TinyMom. As you all know, she avoided going on dialysis for 10 years with a very strict diet. She had to cut some foods out of her diet that contained either a lot of potassium or protein. Tomatoes, potatoes and bananas were on that list. Her favorite food? Pizza. She hadn’t had pizza in ten years. Close your eyes for a moment and think of something you eat every week because it’s your favorite. Now, imagine yourself ten years from now (OMG I will be 50!) and think of NOT having something from TODAY until that day. So, I told her the day I met her that I would be buying her first pizza.
It’s so weird, though, that people said to me “Why do you have to buy it for her? You already gave her a kidney!” which just goes to show you the nature of most people. I’m a giver, that’s obvious. It never occurred to me that buying her something would be looked at like that. I’ve learned the past few months that people are generally selfish & self-absorbed. I’ve also learned who I can and can’t trust, which really sucks.
While waiting to get ready to order the pizza and go over there for dinner, it was also a pretty big day in TwitterVille for me. I was about to hit 50,000 tweets. Fifty. Thousand. Over the weekend, a friend had asked me “So, what are you going to do for you 50,000th tweet?” I had thought about it a few days before, when I saw my tweet count. Holy shit! Have I done anything else 50,000 times? What about sex? Have I done that 50,000 times? I mean, we’ve all eaten 50,000 times. But I’ve been on Twitter for just over 3 years, and it breaks down to:
1147 days
27,528 hours
Roughly 47 tweets per day
1.87 tweets per hour
and on and on and on…
So, I thought about it. Two big things happening on the same day. I didn’t want it to be too stupid, so I turned the comedian off. The biggest thing Twitter has done for me revolved around my recent surgery.
My 50,000th tweet:
(I can’t get the damn thing to upload!)
I’d been soooo excited for weeks about speaking to 9th graders as a school in Scottsdale. Sometimes I miss being in the classroom (I taught middle & high school for 6 years) but I doubt I would ever go back to teaching. They kids were great and seemed to actually pay attention. I was hoping for more questions, but they were probably shy. Or shocked.
As I was getting ready to drive up there, though, I got a call from my mom. My parents are in NY right now on vacation visiting friends and relatives from my hometown. I rarely listen to her voicemail; I just call her back as soon as I get a chance. It’s a voicemail I will now never, ever erase.
She told me that the night before, my cousin Sara was found hanging in her closet. She had had a fight with her boyfriend (who I told her to ditch 6 months ago) and luckily, he called my aunt to have her go check on Sara. My aunt got there and found Sara. She had hung herself. Her heart wasn’t beating & she wasn’t breathing. My aunt performed CPR, got her breathing, but she stopped again and was revived when the paramedics got there. Once at the hospital, they induced her into a coma & put her body on ice. I guess lowering the temperature is done often, but I am not really sure why. She is not breathing on her own. She also had a heart attack. When they tried raising her body temperature, she started having seizures, so they are gradually lowering her medications. I am not entirely clear on all the details.
Sara is not even 25 yet. I remember the day she was born. My grandmother used to sing this song “Sara” to her by Jefferson Airplane, or whatever their name was at the time. I’m so sad. My family is very small. My father had no brothers or sisters. Sara is the daughter of my mom’s younger brother. In all, there are only 8 of us cousins in the family. There were 9, but my cousin David died almost 20 years ago when he was struck by lightning playing golf.
I am trying not to find blame, and I have a lot of it I *could* use. Right now, I feel a rock in my stomach and I haven’t stopped crying, except for when I had to present last night. It’s been tough. I keep going to her Facebook page and seeing the postings from her friends. I so want her to be ok, but I am trying to prepare myself for the worst. I can’t.
Sara was a really shy kid. We called her “Sara Loo-hoo” because she looked just like one of the kids in the Grinch cartoon. I so wanted to hold her when she was little! She was definitely the darling of the family!
I want nothing more than for her to be ok and get the help that she so desperately needs. I’m angry, too. I am trying to put that aside, though, and send positive vibes. It’s killing me. I don’t know the last time I felt such sadness. I don’t get sad often, but this is hitting me pretty hard.
My Friday started on another emotional note: Our story was featured on The Today Show. They flew out a couple weeks before the surgery and they were present at Mayo the day of & the day after the surgery. Seeing the story on TV brought on the waterworks. Donating has been the biggest thing in my life! The support from the airing was IMMENSE! I’ve gotten messages on Facebook & Twitter from perfect strangers, all positive. I just hope that our story inspires others to do the same. I never knew how much live organ donations were needed. This whole experience has been amazing!
I presented at Ignite Phoenix last night. Holding my emotions in, I did a pretty good job. I had been wanting to present for a couple years and I finally got the opportunity to present on the kidney transplant. It was only 5 minutes, but from the feedback I got, it really impacted a lot of people. One girl came up to me after and told me her father had gotten a kidney (cadaver) 22 years ago! He’s the 2nd longest living recipient from the hospital where he had the surgery. I’m amazed!
The support & love I’ve gotten from everyone from friends to strangers has been overwhelming. I don’t know how I would have gotten through all of it without all the special people out there. I am truly lucky!
So, it’s been a crazy week. I plan on staying in tonight, keeping busy with housework and regular work. I need an Amy day. And I’m hoping I don’t get the dreaded phone call with really bad news from my mother.
I love you, Sara. Stay strong. We’ll all be here for you!!!
Update: My mother just called, and Sara passed away. They have decided to donate all her organs…because of me donating my kidney. In some small way, what I’ve done will save more lives than just TinyMom’s.
RIP, Sara. I will miss you so very, very much.
My grandmother started singing this, we all followed:
[youtube=http://www.youtube.com/watch?v=ZqRTtkEHrA4]
I would say I am about 85% recovered from the surgery. My laproscopy scars are almost all healed. The incision where they took the kidney out has no more scabbing, but it’s still numb and a bit swollen. It doesn’t hurt anymore, though, to get up and down like it did at first.
I am walking a couple miles a day. I even did some lunges & calf raises the other day. I have yet to attempt yoga, because I can’t do any twisting yet, but I will try some light yoga tonight or tomorrow. I am eating normally. I do get tired, though, once a day. It’s enough that I need a nap. It hits me like a ton of bricks, too. Hey, I’ve always loved naps! Now I have a valid excuse to do it any time I want.
I am back to working full-time, too. The best part about my (new) job is that I work from home and I pretty much work my own hours. I do social media, so it’s not a 9-5 job, that’s for sure. I’m learning a lot and working a lot, but it’s what I love to do! The people I work for have been awesome and so supportive.
I am still a bit limited in the wardrobe, since my stomach is still a bit swollen and sometimes underwear is really uncomfortable. I really don’t worry about anyone saying anything about wearing the same thing they saw me in a week ago. I mean, come on. I donated a kidney!
I am speaking at a high school tomorrow about the transplant process. I am also presenting at Ignite Phoenix on Friday. If you’re not going, or haven’t even heard of it, it will stream live online at ignitephoenix.com starting at 6:30pm PST Friday. I don’t know what time I go on, but you will love the other presenters as well. I’ve also been asked to speak at other conferences/gatherings of surgeons and organizations about being a live donor. Some are even paid, which is pretty cool!
So, it’s been a month. A really incredible month! No more appointments for about 6 months. I’ve only been to visit TinyMom (my recipient) once since we got out of the hospital. Mostly because she’s still pretty tired and the last time I went out there I was pretty wiped out. I’ll try again this weekend or Memorial weekend.
I’ll be performing again starting next week. I’m getting back into the swing of things. The social aspect is a bit challenging for me because I really don’t last out in public for too long. I get tired. But, guess what that means? A nap!
It saddens me that people think I donated my kidney for attention. It’s been over two weeks since the transplant surgery, yet I still see it being said. Wait. This doesn’t sadden me. It hurts. It hurts really badly that anyone could think this. It also makes me extremely angry that anyone could say such a thing. Obviously, they are people that don’t know me (or Kirti) at ALL. Yeah, we’re shameless in promoting our cause. But that shame has already found a kidney for someone else…that we don’t even know. We’ve had so many people asking us both questions about the surgery, and that is what makes it all worthwhile.
For publicity???? Let’s get something straight here: I donated my kidney to a friend’s mom because there was a need that ANYONE could fulfill. Guess what? I’m not the type of person to stand by and not at least TRY to do something. I would have been CRUSHED if I hadn’t been a match and had to sit by waiting for someone else to step forward. Yeah, I guess I’m a gutsy broad but I’m also a nice, gutsy broad who would do ANYTHING for the people in my life who mean so much to me.
For publicity???? For 4 months I have physically and emotionally suffered through all of this. Actually, almost 5 months. I have been poked for blood over a dozen times. Though I have to have a yearly blood test anyway, the feel of a needle going into my arm every 3 hours was NOT pleasant. Could you do it? I’d gone through 8 weeks of testing (I could have done it all in 3 days, but I was afraid to lose time from work. See where THAT thinking got me???) that I did ALONE. I was terrified during the CT scan. I had never had health issues in my life and here I was, having iodine shot into my body. But as I lay there, all I kept thinking was “TinyMom hasn’t had pizza in 10 years. I can do this.” I went in for what I thought was a simple blood test one Saturday and was checked into a hospital room, because it was a 3-hour test. I had no idea it was going to take that long. I broke down in front of the nurse and told her “Just get it over with. I need this done for TinyMom.” Those were my exact words. And I cried. Alone. In a hospital room. For 3 hours on the day of my birthday dinner and FnB fundraiser. I couldn’t really enjoy either celebration because I was still in pain from the testing that day.
My testing wasn’t even done yet when I lost my job. There are several reasons surrounding that, but the testing was so stressful and time-consuming, I couldn’t concentrate at work. I am 40 years old and I was unemployed. Not only that, but I had to go on-camera for a few news stations and talk about it. I had to hold in my emotions, even though I wanted to break down and scream and kick and cry, to get the word out AGAIN about kidney disease. I do not like the publicity which everyone seems to think is the driving factor in all this. I may be a performer, but once there’s no mic in my hand, I am an introvert. I have to recharge by being alone at home quite often. Every time we were on the news, I watched. And cringed. The attention wasn’t always welcome. My phone, Twitter and Facebook blew up and I couldn’t keep up with it. I wasn’t taking care of myself in order to answer everyone else. I didn’t sleep or eat or shower or leave the house for 2 days after I was fired. Does that sound like I did all of this for publicity???? (By the way, the “publicity” got me an awesome job, doing what I love, because of someone following me on Twitter.)
For publicity????? For 5 days after my surgery, I didn’t shit. That’s right. I didn’t take a shit because of the pain killers I had been on. My stomach was bloated as if I were 3 months pregnant. I couldn’t stand up straight and it hurt to sit down. I also got my period, after it had JUST ended 5 days prior. So, as I am bloated, swollen and in pain from not shitting, I got to attempt to change my tampons. Once I finally got my body going (I mean ONCE I TOOK A SHIT), the pain started to subside. I had to take two stool softeners a day, drink Miralax AND shove a suppository up my ass. I did THAT for publicity, mind you.
I have a 4-inch scar that is still healing, in my PUBES. That means I can’t shave “down there” for quite awhile. I have 4 laproscopy scars on my stomach, with scabs the size of nickles and dimes. That itch. That hurt when I bend over. The incision below is still swollen and I have just now begun to wear underwear because it’s been too swollen & uncomfortable. I am finally weening myself off the Vicodin, which I hate taking. I can’t wear any of my normal clothes yet because of the swelling.
I get really tired still, which is normal because my remaining kidney is growing. I can only go out in public for about an hour at a time and need a nap right after. This means I’m missing out on a LOT of comedy (which has been my life for 8 years), birthday parties, going-away parties and social functions. I am lucky to have the friends that I do and I get visitors, but it’s not the same as being surrounded by people.
My sleep patterns are completely fucked-up. Because I have to nap a couple times a day, I rarely get to sleep at night before 3am.I have a job to do. I have an Ignite presentation to do. I have Dexter to take care of. I have laundry to do. I HAVE to make myself get up, often after only a few hours of sleep, because life goes on.
The word “altruism” has been shoved around a lot the past few months, in regards to me donating my kidney. Here is the definition of altruism, from dictionary.com:
“–noun
Well, it’s been 11 days since I donated my kidney to TinyMom. I am finally moving around better. For the first time in 11 days, I wore underwear yesterday. I couldn’t wear it until now, because my belly was so swollen from the incision they made to pull my kidney out. I’ve got 4 laproscopy scars on my stomach/rib area which still have the meditape on them, though one fell off finally today. Everything is itching. The scabs from the laproscopy are about the size of a dime. The incision down in my pubes is about 3 or 4 inches across. It’s like a mini c-section. It hurts a little still, but I am only taking pain pills at night for it. There are yellowish bruises around it. The stitches are dissolving, thankfully.
I went out yesterday for lunch for Yelp Office Hours. I was only out for 90 minutes, but it pretty much drained me. Because my remaining kidney is growing to compensate for losing the other one, I get tired easily. I also went to dinner with Kirti and that pretty much did me in. We went early, 5pm, and I was home early, but I was exhausted. It’s really hard for me to NOT go out and do social things, especially since I am not really driving much yet. That’s been the hardest part: not driving. I’m single, I live alone, and I’m extremely independent. Relying on others has been tough, but I am so thankful for my friends and neighbors who have been carting my ass around.
My neighbor Nancy took me to Whitfill today to get some plants for my patio and apartment. That’s about all I could do today. I napped for 2 hours this afternoon and that NEVER happens. I love naps, but I rarely sleep for more than an hour.
I have to step back and try not to push myself the next week or so and be thankful that I have the opportunity to relax.
I’ve been working everyday, which I do from home on my laptop, so that’s been pretty easy to get back into. My job is not a 9-5, M-F. I work whenever I can. I’m grateful for my job and I love what I do, so it’s easy to get back into it.
The support I’ve gotten from people is just amazing! Then again, there are some people I thought were truly my best friends that I haven’t heard from once since deciding almost 4 months ago to donate my kidney. I guess I am realizing who the really, truly genuine people are in my life and who the flakes are. Maybe some people aren’t comfortable with the subject, but no matter what, I would support my friends in something this big. It hurts that I haven’t gotten that back from some. Oh well, right?
I am still sooooooo happy with the decision I made and I am glad to be bouncing back. The pain is almost gone and I can deal with being tired by sleeping. Would I do it again? Yes, but, thankfully, I only have one kidney and can’t. Hahaha!