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Friday, January 6, 2017

Anniversaries and a New Years Resolution

Five years ago, I found myself sitting on my brother's couch, finally able to see their cute kids, Marley and Jake, after being in ICU for 25 days. I was enjoying hearing them play and was looking forward to a home-cooked meal for dinner.

Then I tried to get off the couch. The mind was willing but the flesh was so, SO weak. I couldn't get up. I didn't have the strength or coordination to lift my muscle-atrophied legs and arms; or place my walker in a way so that I wouldn't fall back over; or manage my oxygen tank, tubing, and the medicine pump that was hooked to my stomach.

I thought I had been doing so well.

I'd finally gotten to the point where I could walk around the nurses' station, twice. But to do that I'd started in a standing position, clinging to a cart that was already stable and flanked by my physical therapist and my nurse. The reality of just how frail I had become overwhelmed me.

How'd I get to this point?

And why me?

I didn't live the perfect life, by any means, but I hadn't lived a bad one. Generally speaking, I treated almost everyone the way I wanted to be treated, and I tried to be a good person. I'd even been athletic, whether it was carrying the gigantic U of A flag around the gym before game time or competing in different sports.

And now I couldn't get up off the couch.

Life's been a whirlwind since then. But the main thing I've done is recommitted to writing more about it. Recent (dismal) events and the factor of "you never know" has shown me there's more I need to say and do, especially since I've been given the time.

I've been officially diagnosed with my illness for eleven years. Most people with pulmonary hypertension die within three. The doctors didn't think I'd make it through the first weekend. 

I have more to say, and I plan on saying it. That's my New Year's Resolution.

Wednesday, July 20, 2016

Ugly Plans For Laughs

I want to be cremated.

This has been my wish since my early adult years, for several reasons. First, I've never been one to stay in one spot. Anyone who knows anything about me can verify knows that. When people ask where I'm at nowadays, I usually respond with a variation of "loosely based in Tucson." Because, when I'm feeling well, I travel as much as I possibly can. Dead or alive, I don't want to stay put.

Second, I have a travel bucket list, and I'm hoping my friends will complete my travel list with my ashes. I haven't been to Africa or Asia, and maybe they can use my death as a reason to see those two continents. I also haven't been to Antarctica, but it's too expensive to go see some penguins, a few other extremophiles, and snow.

Third, I don't want anyone to cry at my grave. I've seen people mourning at graves and I don't want that. AT ALL. Especially my mom. She's shed enough tears.

Hopefully, I'll have done enough in my life to qualify for my version of heavenone with mango trees and my hunka-hunka burning love. I know it's there. And I hope people realize I'm there, laughing and building rainbows and haunting and practical joking my living friends. Laughter through tears, because crying causes headaches, and it's uglier, messier, and snottier than laughing. That's not my style.

The only reason I would change my mind would be if that aforementioned hunka shows up. I don't want to be buried next to anyone else. That would be the only person I would want to be settled next to, the reason I would sit still and not travel. I'd stop traveling and settle down now if the right man showed up and changed my last name. The deceased in my family have all been married and buried or cremated and they're all over the place, and buried next to their spouseswith the exception of an older brother who is buried on top of grandparents in Kauai. Everyone else in my family are with their spouses. And since mine hasn't shown up, yep, cremate me, take me to Africa and Asia. Divvy me up and let's go. A couple of last adventures with good friends. That's my planned exit.

Or fireworks. Maybe fireworks.

Wednesday, November 27, 2013

The People in My Neighborhood

"When disappointment and discouragement strike--and they will--you remember and never forget that if our eyes could be opened we would see horses and chariots of fire as far as the eye can see riding at reckless speed go come to our protection.  They will always be there, these armies of heaven, in defense of Abraham's seed."   --Jeffrey R. Holland

I know angels.  I know more than I ever imagined. 

I never imagined the outpouring of love from the people who want to help.

Since the reality check of the extended ICU stay and (forced) decision to stop working and admitting disability, the generosities and opening of hearts have been astounding.  And even though I am not really surprised, I am both filled with gratitude and amazement that I know these kinds of people.

A sample of examples?  Sure.  From shelter to transportation, friends I call family have volunteered their home for me.  I still am getting offers of spare bedrooms.  When it was discovered I didn't have a vehicle, a friend handed the keys to his jeep over without thought and I used it for over six months.  Before I left Phoenix, my home was burglarized and amongst the things that were stolen, my laptop was one of them.  A used laptop was given to me as if it was no big deal.

There have been more than one instance that cash  or gift cards have found its way into my purse/wallet/pocket/mailbox, usually just in the nick of time when I am wondering how I will be paying for prescriptions or doctor's copays.  (I still haven't been approved for my disability, but that's another nightmare.)  Many times I know the giver, more often I do not, and every once in a while, I recognize handwriting even though they want no credit for their generosity.  I'm still trying to figure out who sent me one of those cool get well baskets when I was in the hospital.  It arrived and no one looked, they just opened it so we could enjoy all the goodies.

And that's just the material needs.

Only every once in a while do you get the opportunity to have one of those cool, straight out of the John Hughes/Cameron Crowe movie moments and mine happened in the hospital.  Except I didn't react so cooly.  I had to have a power port put in place, a usually minor procedure, but knowing I'm a terrible surgical candidate, there's always that slight fear of dying because of some complication.  Anyway, my mom couldn't be there but I was already an inpatient so it was just going to suck it up and pretend it didn't bother me that no one other than the nursing staff would be there when I woke up.  But then when they were wheeling me back, it was a Ferris Bueller moment when the bus moved and there he was waiting for Sloane, or like when Jake Ryan was waiting for Samantha after everyone else left for the wedding reception.  Not that I hadn't already survived the procedure, but it was just one of those cool moments in life.  And instead of playing it cool, I squealed my friend's name like the still stoned from anesthesia idiot, three octaves higher than I thought I could squeak. She knew I would be nervous.  She showed up. 
 One of those times I was going to have to check into the hospital, I was still waiting at my doctor's office as he called to make sure I had a bed waiting, I posted on Facebook something about having to check in again.  Before I was even fully registered and had my ID band, I had a visitor.  I hadn't even gotten to my room yet and she found me at registration.  She said she just happened to be in the neighborhood.

Then there are people who are inspired to show up right when I need them.  Its been a tough couple of months and the stories I could tell you of friends who have showed up to advocate for me and make things happen as far as my care goes.  And just in the nick of time.  Its been humbling to watch these people just step up and write letters, or fill out paperwork for me when I just can't do it anymore.  People who show up with deviled eggs because they know I love them or flowers, bringing me groceries or prepared meals, just waltzing in and doing my dishes or taking out the trash as its been hard just to stand on my feet .Or as simple and lovely as just showing up and seeing my swollen feet and giving me a foot rub.  That was a great day.  Service and compassion has not been skimped on when it comes to my neighborhood.  What's strange is that I haven't had to ask for hardly any help, these people have just thought of me and acted upon their instincts and inspiration.  I can think of more than once where I have had a thought of, "Homemade soup sounds really good" or "I wish someone would come give me a foot rub", and well, you already know two women showed up and did it.  Within minutes of wondering how I was going to make it to a doctor's appointment because my ankles were swollen and I knew I might have trouble driving my stick shift, a text was received and a ride was offered.  Within MINUTES.

I am truly blessed.

Tuesday, November 12, 2013

In Case of Emergency and Day to Day Life

I recently had my fifth right heart catheterization and this one was, emotionally, the toughest.

I had my mom or my best friend there the first two times, and those are the two people I can be 100% vulnerable around.  And I needed that.  The next two times, I was already checked into the hospital, so I was already set in case something bad happened.  But this time I forgot to plan who was going to drive me to the hospital.  I hate inconveniencing people, but there's the added burden of deciding who you would want there if things go bad.  And my mom and best friend have both moved out of state.  They'd be there for me as soon as they could, but it would take at least six hours.

I'm fortunate to have a plethora of great friends who would happily volunteer to be my emergency contact, but who do I choose to inconvenience?  Who could deal with my everything?  Who do I want to see me in my worst possible state should that happen?  Who could I trust to make decisions to follow through with what I would want to let me go?  Its gotten pretty ugly recently, especially when I think about some of the responses from my friends when they've visited, and their tears.  The last thing I want to do is scar someone.

But, all that said, I survived, and so I can put off the decision of who to list yet again.  If something were to happen, my best friend is still listed as my emergency contact, and if you were to ask me under pressure or anesthesia, his is the only number I could tell you; its the only number I've bothered to memorize thanks to speed dial and smart phones.

Which gets me thinking about things that single people have to think about.  Who would be your 'person when carefully planned out?  Married people of course have their built in answer.  Single people not so much.  I sit here thinking, hmm, who would be able to stomach the ugliness of what I might have to go through to get well, or who would I authorize to make the decisions necessary that I could trust would follow through with what I would want?  Of course there's that, and then there's the other end of the spectrum, the, who will be there every day if something were to go wrong.  The hold my hair back when I'm vomiting moments, help me do laundry when I can't get out of bed, the creature comforts that were a given from family when you were little and you didn't have to think about who was going to take care of you.  Who would I allow to see my vulnerability?

So what about you?  Who would be the person when, under pressure, you contact first?

Wednesday, February 13, 2013

But, I'm an Alto...

Don't laugh, but I used to sing. I used to sing and loved to sing and harmonize. I sang voluntarily, and not just in the shower or car with the windows rolled up. Not as a soloist mind you, but in a choir. And I miss it. Well, I miss being able to breathe deeply, you know, the deep cleansing breaths that fill your belly...but being able to take that breath and turn it into notes that may or may not be right on key. Hey, I never said I was a pro.

At one point I could sing second soprano, which is a little bit higher on the scale but still not really in the headlining soprano range. I clearly wasn't caught up in the technicalities of singing, I just enjoyed being a part of something that created a nice end product. I used to claim first chair as a trumpeter, which often maintains the melody, but when listening to a band or orchestra or any kind of music, I would focus on hearing the other parts by supporting instruments. I mean, its not like a cello can't do a solo, its just not as common, just like oboes, clarinets, violas, and french horns are usually not featured. However, if they're not there, you might or might not know that they were the instruments missing but you might recognize that the overall sound is not complete.

So one of those times I was not exactly on key. Yeah. That was in front of people. With a microphone. I was doing a super short duet, the intro part to a song called, "Oh, that I were an angel". And the soprano was missing, so the director told me just to sing the part.

It had been ingrained in me to follow the tune of the main instrument, and so I always had. I knew my notes, I knew how to read them, but without a soprano to follow, I couldn't hit the right notes to save my life. I needed a soprano to sing the melody before I could harmonize with the alto part. I embarrassingly voice-fished for my part, bouncing between what I knew was the melody but was ever so slightly too high out of my range and what I should have been singing. It sounded more like yodeling.

Bad yodeling.

My point?

I can function on my own. I know enough to get by. But I'm an alto. I do so much better not taking the lead role, I'm way better at a supporting role. I don't want to take the spotlight. I'm not the flashy bright colors you see at first, I'm more of the undertones-type of person. Part of my problem is that even when there's just a melody, my brain automatically fishes for the harmony.

I'm somewhat of a closeted hopeless romantic. I'm still looking for that great love, my partner in crime in life, someone to share my miseries, accomplishments, and my baked treats. There was a time not that long ago when a man sang, "So you had a bad day" when I had a bad day. I have been serenaded on my answering machine, and still have the answering machine's microcassette to prove it. There was a time when I was bold enough to actually use my pointy finger at a hottie and tell him to introduce himself because I needed to know such good-lookingness. There was a time when I could to dig up a cute date the same day I had to be at a wedding (and he showed up in a flashy new red convertible and a new suit!). I love that a man once burned his finger while melting chocolate to make me homemade brownies from scratch. Once a gentleman answered his phone "Be still my beating heart!!" when I called. I once dated a man who wrote me a handwritten note at least three or four times a week and left them on my pillow or on my car's steering wheel the entire six months we were dating. One man baked tiny cookies and spelled out "I love you". One man I went out with didn't have much money so he would pick me wildflowers. No, I'm NOT making this up. When I was first sick with pulmonary hypertension, there was one who would carry me up the stairs, and give me piggy back rides on demand, and coached me while driving those handicapped carts at Target.

Being alone and being lonely are two different things, I certainly recognize that. And another truth I acknowledge and have ALWAYS proclaimed is that it is better to wish to married than wish to be single. But I have known what it is like to be loved, and miss it. I know what great love is, I know what its like to be treated well. Sometimes I wish I could be one of those women who can claim to be a whole person without a partner and it doesn't matter because they have their job/career/religion/family/friends/money/experiences/hobbies/DVD or DVR collection/pets/knitting needles/crochet hooks and yarn that make up the difference. But I have also experienced falling asleep in someone's arms during one of my favorite action movies not because of exhaustion or the movie was bad but simply because it was my most peaceful place to be and I always feel safe with him. And then waking up after the credits are rolling and just being so happy that having him as a pillow wasn't a dream; just being next to that 'him' made me smile. Not because neither he nor I were perfect, but because I know he was perfect for me. I've been that silly 'sentimental schmuck' that can't stop smiling just knowing there might be an upcoming possibility that I could see him. These glimpses of what I have had makes searching for what I want, well, it certainly sets the bar high. But when you've had a taste of the really REALLY good chocolate straight from Belgium, its hard to go back to the cheaper, drug-store variety. Factor in the, 'gee, when do I tell him I've got this rare terminal disease' part, on the first or second date? and its daunting to think of who's going to want me. Ugh. Don't get me wrong, I am so so SO grateful for the people already in my life, but you know how when a baby falls asleep on your chest and its the best peaceful feeling? Its intoxicating. There's nothing like being with your best friend who can morph to become that great love. I can't settle for less than what I've already experienced. Not that I am ever going to pull the 'you come here, I need to know you' move with my pointy finger again unless I'm uber compelled and feeling bold and just THAT confident again, but that knowledge of, "yes, he IS the love of your life" affirmation that many of you already know.
I'm still looking for my lead singer. (A classic.  Just for fun.)

Thursday, December 20, 2012

Spaceman Spiff and Dorie Save the Day

(Every time seven comes up, I think of this comic strip.)

This is my seventh blog entry. Lucky number seven. This month marks the one year anniversary of my extended ICU stay. December 12, 2011 was the first day I just couldn't pretend to be healthy anymore. I worked a full 12-hour shift the day before I checked in, and that was my sixth day in a row. I wasn't feeling so great and it showed. I moved gingerly and helped with at least three births and one C-section. Several of the nurses kept asking if I was okay, but I just smiled. I got through it, but barely. And then I went home and was so uncomfortable that I could hardly walk due to swelling from my medication site, and my heart kept thumping, and it hurt just to breathe. I couldn't lie down or sit up straight because swelling in my abdomen caused more pain. But I was so, so tired that I didn't want to do anything except down all the pain meds in the house. Its a good thing that it hurt too much to get up off the couch. I remember thinking, "if I live through tonight I'll go to the hospital in the morning."


It was a night of painful, shallow breathing. I was actually surprised to be alive in the morning. But enough was enough, and I was done. I knew my brother would be up early so I called him first. I've been single my whole life, and fiercely independent and would have driven myself, but I couldn't. Jared was at work, and I remember him saying things like, "You need to call an ambulance. I should call an ambulance. You're worse than you think. You sound terrible" and I kept thinking, if I made it through last night, I can wait for a ride, I don't want to pay the stupid co-pay for an ambulance. So my sister-in-law came to take me to the hospital and I looked so bad that I scared her kids.

Much of the next few days were a blur.

I remember showing a doc and nurses my inflamed belly, and it was almost funny to see them gasp and shrink back. Then they kicked into action and, bless that first nurse, who not only took the time to find a good vein for an IV, but placed it in the middle of my forearm instead of the vein close to the elbow. And she (I think her name was Allie) suggested fentanyl since morphine products make me nauseated. Best. Suggestion. Ever.

My heart rate was so high they didn't want me to move. I was in a drug stupor. I heard everything, but couldn't move at all for the next couple of days. Funny story: I had to have a Foley catheter placed, and the nurse who came to do that was so pleasant and so sweet and explained everything she was doing that I thought, "Am I getting a Foley or a facial?" I remember people coming in and visiting but not being able to do much other than open my eyes. It was bad enough that my brother called my parents and they were there as soon as they could drive up from Sierra Vista (Hereford, actually). My brother is a doctor and my mother, who never panics from years of being an emergency room nurse at army hospitals, were both worried more than normal. I know I should have been more worried, but I was just really happy that I had a good IV with the fentanyl flowing freely. Bits and pieces of that first week come back to me every once in a while, and now it seems so surreal. Its strange to know I had to be resuscitated; I remember people in my room yelling at me to "BREATHE!!!" and all I could think was, "Nah. I'm tired. Leave me alone. Don't you know how hard it is to breathe? I don't want to." But they wouldn't stop yelling, so I finally gave in and tried. I'm a Leo born in the year of the Tiger, I was a Buena Fighting Colt, then a University of Arizona Wildcat. And I promised friends I would make it to our 20th high school reunion. Giving up at this point was not an option. The "Go! Fight! Win!" had been installed and rebooted.

So its been a roller coaster year.

I'm still here, but I'm trying less to figure out why, and more focusing on finding the right path. I wonder why I'm not dead, and I wish I knew why I've been kept alive. I guess I have work to do; I just wish I knew what it was so I can focus on that goal, instead of just surviving. You know how people who live through terrible circumstances say things like, "If it wasn't for my husband/kids/pets, I don't know what I would do?" I gave up custody of my dog when I couldn't keep up with her, and have no husband or I'm that person who doesn't know what I'm going to do.

Guess I'll just keep swimming.

Tuesday, August 21, 2012

Business Up Front, Party in the Back

Me.  Thirty-eight years ago.

Here's some interesting numbers, since we're doing business first.

I traveled approximately 5446 miles to get to the Washington DC/area, to visit with some of my dearest friends, and to go up to New York City for a day trip with them, and then down to Orlando for a conference and then home.

I missed out on 2448 more that I was aiming for, to reunite with people I hoped to see for a 2nd high school reunion for the high school I was supposed to go to in Washington (yes the other side of the country) had I not moved to Arizona in the late 80's. Because, five - I was admitted to the hospital for the 5th time in my life in July. Same stuff, different day. Enough pain and trouble breathing to scare me into checking myself in. What actually happened was the previous week I was at my rheumatologist, and the PA had that serious look on her face and said, "Something's not right. I can't hear lung sounds in your right lung." And I hadn't felt well since my first high school reunion at the end of June and trip East. I'll get back to that in a minute. I still have more business to cover. WHS Patriots class of 92ers who might be reading this, you know it HAD to be a hospital stay that kept me away. I fought that until the bitter end. Diagnosis this time: pleurisy. Yes it feels like pain that could kill you, in fact, on my pain scale, its one of few things that hit 10. But the pleurisy, albeit extremely painful and exhausting, will not kill me. And it is one of my main reasons for delay between was my shortest stay so far, only three days!

(And, it gets better. It'll behoove you to keep reading.)

Twenty-five is the pulmonary artery (PA) pressure measurement at which you are officially diagnosed with pulmonary hypertension. The first time they measured this on me (done by a right heart catheterization in January 2006), my number was in the 50's. During my extended visit to the ICU that brought me to 2012, I don't even really want to talk about how high my numbers were...Three is the number of heart catheterizations I've had since, bringing the total to four. Thirty two was the age that the doctors who discovered my disease thought I might make it to.

Thirty eight is what I will be turning today.

Thirty four is what my PA pressure was on July 19, 2012, almost a full six years after that initial, "You MIGHT make it to your next birthday" (the one where I wasn't supposed to turn 32.) The lowest my pressure has been since diagnosis. And I still haven't tried all the treatment options, which is great because I still have room to get sicker in case I need those options. Ooh, I forgot, five is also important because that is also the average life expectancy in years for people to live with my diagnosis before demise. For non math people like me reading, that means me turning 38 is 20 months longer than the doctors would have dreamed.

At conference I learned that 9 is another tri-purpose number for me: first because a pill form of Remodulin, the drug that I have on pump that causes my biggest side effects due to the pain of the catheter site, is on the FDA's desk, and they're estimating that 9/2012 is when they will make their decision. Nine is also the number of clinical trial studies that are in the human trial phase for new treatments for PH. How's that for moving closer to a cure? For a rare disease that effects 12 in a million, going from zero treatments in 1995 to 9 current FDA approved treamtents with 9 more so, so close to being approved...I will be going swimming next summer. One way or another.

Enough good news? One more number (for now.) Three. Three inches of new hair growth on the top of my head. You can't tell unless I show you that I've got a mullet. Its kind of funny, and kind of sad. I lost so much hair in December/January that I barely had wisps, and I contemplated buying a head wraps, and wore lots of hats and headbands if I was going to be seen in public. Except for when I went to church, where I am not comfortable throwing on my baseball caps. I'll freely admit, I hated the way I looked so much that sometimes I just didn't go because I was frustrated at the Miki-patterned baldness. Slicking it back into a bun or ponytail is the best way to hide it but still, I have a mullet. But the hair is coming back. Finally. Guess I have one less reason to use to ditch being seen. Which is a good thing. It might be a little big more grey than I would like, more grey than it was in December, but considering how close to dead I was, I don't have much to complain about there. Plus I know some people who are just magical in that department.

Now for the party in the back.

Other good news I learned and overheard at conference, whether it been over a podium and officially announced to the masses or overheard in discussions with doctors and researchers included statements such as, "They're having tremendous success overseas with completely different approaches to the treatment of PH, using meds that treat currently treat cancer"; "We're constantly meeting people every DAY who have and continue to keep beating the odds"; and the one that almost instantaneously made me tear: "They're almost to the point where they might take the 'terminal' part away from the description of this illness because people are doing so well". Conference was amazing, its a strange conference that includes not just patients, but the doctors and researchers and major drug companies, all together, all interacting, all genuinely concerned. Patients roll up their sleeves and head to the research room and give blood samples since you'll never find this many patients in one gathering, anywhere else in the world. And clearly its working.

Hope exists.

You might not ever know how good for my soul it was to come home after that, and see even more people that I love, and to reunite with people I hadn't seen in a long time. I haven't had that much fun in one summer in such a long time. I can't even count the number of times I nearly peed my pants laughing so hard this summer. Which is what I'm relying on to get through this pleurisy phase since I'm not going to lie, hurts. Its the kind of pain that hurts with every breath, to the point where you almost don't care if you would stop breathing. But then I think of how many more people I still have to reunite with while I'm still here on this planet, and I'm motivated to fight again. And the line from "When Harry Met Sally" comes to mind:

"AND I'M GONNA BE FORTY!!! ...someday... but its OUT THERE!"