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."

If.

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 kids...so I'm that person who doesn't know what I'm going to do.

Guess I'll just keep swimming.
.

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 posts...it 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!"

How Tolkein and Dickinson Are Related, part two

It doesn't seem I'll be able to return to work, despite wanting to be back in the operating room. Not as a patient, mind you. Helping. But I suppose one of the main reasons I'm still alive and doing better is the fact that I'm not working. At least, that's what docs have said. And other medical professionals. And most of my friends. And a lot of my family. And I am thinking I should probably go along with this concept. Its so strange, I've been working since before high school, babysitting since it was legal for me to be left alone with kids, then at least full-time since adulthood. Prior to this being diagnosed with pulmonary hypertension, if I wasn't working full-time, I was in school full-time while working part-time. I made time for fun, though. I have a few stamps in my passport from traipsing around the world.

But regardless of where I was, it was more about the people I was with, or who I was visiting. Which is why when all is said and done, to touch on my last post, I want people to say I was there for them. With them.

When I first got sick, one of my Choose-Your-Own adventure endings to my life was to travel to India or somewhere abroad where I could just volunteer everything to just hold babies until I died. But funding for that was nearly impossible, even though it seemed like a great idea. I needed a more thought out plan since my medications are not cheap, and being without them is drawn-out suicide . So now I have another Choose-Your-Own adventure ending, the 'just start driving' end, where I want to get the most fuel efficient car I can, and get my map, and start visiting the grown up versions of people I've missed seeing over the years, to see their happy lives, and be around their successes.

I've never been happy sitting in one place anyway. It'll be my proverbial long walk. After all...

"Not all who wander are lost."

--J.R.R. Tolkein

Travel details coming soon. Keep posted.

How Tolkein and Dickinson Are Related, part one

A friend of mine died coaching his son's soccer team. I wanted to be there for the funeral even if, truthfully, no one would have noticed I hadn’t gone. I hadn't seen him or his wife in years and, if anything, it might have been awkward. They might not have recognized me , they don't really know the grown up version of me . But I wanted to err on the side of being there. Just so she would know I still thought of them, even though it had been 19 years.

I have enough reminders proving I don't get to know when my turn on this planet is over. And I have regrets, but they all have something to do with me NOT being somewhere that I should have been, or not being there for someone when I could have been. I look back on my short life and my excuses are usually because of work . Which is completely legitimate and acceptable . But lying in the hospital for just under a month led me to realize I don't like being visited in the hospital. Actually, it’s more along the lines of, “I don't want to wait until I'm sick or dead to see who shows up.” I want to see people before I get sicker. Technology has put me back in touch with great people, the kind of friends that are worthy of the description at the end of the movie "Stand By Me:" I never had any friends later on like the ones I had when I was twelve. There are people I haven't seen in years that I would love to visit and know better and see they have turned into fantastic people . Many of them have , I just want to know them again, and hug them, and say hello and goodbye . I want to wander and find more greatness in those friends. I can see how teaching and parenting can be so rewarding this way, you see the potential, and then you see the results. And I like it.

A few years ago, okay maybe about a decade ago, I went to a choir performance, and an elderly gentleman came up to me. I knew exactly who he was, and we both had big smiles as we walked towards each other. Before anything was said, he reached out with both hands and held my face like a little child, and delighted, "I KNOW you!" I had to giggle a little when I realized he didn't remember my name but he kept repeating, "I KNOW you!" I didn't really care that he couldn't remember my name, I was absolutely tickled that he remembered me and smiled. All he remembered was that I was a part of his life somehow and that made him happy, and in turn, that delighted me . And I relish that feeling. I didn't need to bring up the fact that I used to go to his house with his children, and I knew stories of how he raised them, it didn't matter even though they were great stories . He saw me and knew I provided some kind of happiness, and I still can't stop smiling when I remember him holding my face that night. I love it when I recognize people and they recognize me and big, genuine, beaming smiles and laughter ensue . One of my top ten feel-goods . I love the fact that there is at least one three year old that thought at one point in his life that all lollipops come from my purse . I love to be the person who is there .

They might not need me -- yet they might --

I'll let my Heart be just in sight -- A smile so small as mine might be

Precisely their necessity.

- Emily Dickinson

More on this soon.

Missed, But Wanted Opportunities, Part Two

So...I told you that I found a woman with pulmonary hypertension who had children and didn't die .

But there were several differences, such as she had two babies, one before and one after diagnosis. She was younger than me at the time of the birth of both of her girls; I'm already what they consider advanced maternal age; and she is not as sick as me, she's about half as sick . (There's a classification rating from 1-4, she's about a 2, and yours truly bounces between a 3 and a 4.) And, oh yeah, she was married. Guess I should figure out which bridge comes first. I know, I know, women have babies by themselves all the time. Women raise babies by themselves all the time . But I am not that girl. I am not the girl who can look at a catalog of genetic traits and accomplishments and go for it, risking my life to be pregnant, and bring a high risk baby into the world, and then have all the resources to raise said child to adulthood . No offense to those women who are able to do that, but I have to consider the welfare of the child should I succumb. I've had several spectacular women volunteer to be my surrogate, tell me 'hurry up and find the guy' so they can give me my baby...but, my last name is still the one I was born with .

Its an interesting topic to bring up when dating, at least since I was diagnosed. I've dated a couple of really great guys, but hated that I couldn't bear them children. Its a devastating thing. Its one thing to choose not to have children because you don't want to, but when the option is taken from you its different.

Its like that woman in the bible, the aged Sarah, who 'laughed within herself' when she was told she was going to have a son in her old age. I can relate to her. I'm sure she was crying inside too. Maybe I lack in faith, maybe I believe the odds are against me . Actually, I KNOW the odds are against me. Its like what I told my cute sister-in-law: I'm sitting at a poker table, and everyone's hand is dealt, and I've got UNO cards.

Anyone who's known me for any amount of time knows the only thing I've ever wanted to be was to be a mama . Career-wise, I was all over the board . When I was around the ripe age of 3, for some reason, I wanted to be a sumo wrestler. In elementary school, my love of french fries had me thinking about working for McDonald's. Or maybe a pilot. During middle school, I thought it would be cool to know a bunch of languages and be some kind of professor, but secretly, I wanted to learn more about martial arts because our Japanese instructor was a Kendo master. In high school, I was determined to be a nurse . Or an American Gladiator. It didn't matter, I would only be doing said career until I had kids.

 I always wanted my own kids. I used to read parenting books and magazines when I was in elementary school. I started babysitting young, I became an aunt when I was almost twelve. I practiced being a mommy as often as I could, and was that girl who always asked to hold the baby. And I got pretty good at it; nannying was almost always a side job if not my main job. But its always been my favorite job, even though at the end of the day, I leave the babies where I found them, and can go home to sleep mostly uninterrupted, and never had to be back if it were my choice. But I did go back . As much as I could, I went back .

I dreaded this past Sunday at church. Even though I wanted to go, its the one day of the year that the 12-year old boys will hand all the moms some kind of flower or candy, and a 12-year old boy saw childless me and there was that hesitation of, "Am I supposed to give her one too?" Its not that I actually want the flowers or candy, (well maybe I did want the chocolate, who am I kidding?), I want the baby grabbing the candy from me . Or at least the man who would've wanted to have one with me .  Even though the hesitation was slight, I would have rather avoided both of us feeling even the tiniest bit uncomfortable .  Too late . 

But the flowers were beautiful, and the chocolate hit the spot.

I guess I'll just keep getting my baby fix borrowing other people's children. I like the smaller ones, mostly because they don't try as hard to get away. Because I'm like one of the kids I take care of -- he used to yell, "I NEED MY SNUGGLE TIME!"  Same here, kid .

Moms, remember this when it gets hard, I would gladly switch with you .

I like to think I would have been a good mama .

Missed, But Wanted Opportunities

Its Nurse's Week, and this week ends with Mother's Day. Two of my top loves/hates.

I love the profession of nursing. I love the nurses I work with. I love the nurses that help keep me alive .

And I love that there's a day of tribute to moms.

I love my mother who is a nurse. Sorry, to all of the other nurses, as many that I adore, she wins the title of Favorite .

And I hate that I've had to make some nurses run. I hate that I keep giving them job security.

I love Mother's Day because I have the best mom, but I hate that I am no one's mother. And the odds are pretty much against me becoming a mother.

I remember when I was diagnosed and was kind of bummed that I might not live . But when I discovered that my condition makes it nearly impossible to carry my own baby, much less babies, I died inside .

THAT was when I felt the most devastated about having pulmonary hypertension. At the first conference I attended about PH, I had a ton of questions, but I wanted to know numbers. What were the success rates of women with PH who successfully got pregnant? What percentage of them carried their babies full term? Were there any babies born to mamas who had taken the medications required for us to breathe that didn't harm the child, since they're almost all proven to cause damage? The competitor in me was somewhat encouraged when I heard there were a few women who carried babies to term. What was discouraging was that nearly all of the numbers and stories afterwards included what I didn't want to hear: all of the women died within weeks of delivery.

Even so, the optimist in me wanted numbers proving that those stories were absolutes. I wanted to hear that there was no way, just so I could take it as the ultimate triple-dog-dare, and then eventually prove them all wrong. I just needed to find one woman who beat these nearly impossible odds.

And then I found one.
 
END OF PART ONE

Other People's Parts

So...I'm not sure if I should get a new pair of lungs.

I got a phone call last week, and I've been going back and forth between stewed and relieved. It was from the surgery scheduler from the hospital I would be checking into, calling about scheduling a consultation for a double lung transplant.

My insurance doesn't want to pay for the initial consultation or follow-ups. Should I even pretend to be surprised that insurance doesn't want to pay for something? Don't get me wrong, I have really great health insurance, better than most plans out there. But there aren't too many surgeons who want to perform surgery on me, since I'm not exactly the perfect candidate for anything harder than ear piercings. I'm classified as an ASA 4E, which in non-medical terms means that I should only undergo surgery in a dire emergency. An ASA 6 patient, for comparison, is someone who is brain dead, and they're only performing surgery to retrieve organs for donation. What this all means is that there are lung transplant surgeons who wouldn't want to operate on me. There's a new doctor in Phoenix who moved from California who specializes in exactly what I would need, but he's out of my network. And there really isn't a surgeon in my network who is as good a match.

It's probably going to be a fight to get approved, and I'm not sure I want to fight. I agreed to visit with a different doctor because my pulmonologist said he's the best I could get. This new doctor is pretty much awesome according to my pulmonologist, and he wants me to understand all of my options. I just don't think I have this kind of drive anymore. Recovering from surgery is so hard. I had bone spurs removed from my feet last summer, and what was supposed to be a two week recovery turned into four months of foot braces, a follow up surgery to clean out the wound again, and a wound vacuum for a month. It's frightening to think what kind of recovery process would be for me, Miss Worst Case Scenario. This isn't even starting to think about the cost, and who would take care of me once I was checked out of the hospital, and then there's always the chance of organ rejection. But there would be the bonus of not having to have my remodulin pump.

And there would be an awesome scar.

For now, I am relieved to not have that appointment that was supposed to be next week. I don't like those reminders of me being sick. I was glad to take a long weekend in Rocky Point and play not sick.  Even though I got sunburned and already miss Alejandro, the mango man.   

But I guess I'll call my doctor and let him know so he can fight the insurance company. Just in case some lungs become available.


By the way, there really wasn't any more story to Alejandro, other than the fact that he is a mango salesman who walks to you on the beach, puts a mango on a stick, peels it, slices it so that it turns into somewhat of a flower so its easy to eat, and puts lime, salt, and some spices on the mango.  No strange connotation to go with.  But really, when you're just hanging on the beach, its a great thing that people come to you and give you delicious fruit.  My favorite fruit.  EVER.  And food as well all know is much better when served on a stick.  Pretty much every time!  Like corndogs, corn on the cob is easier to eat, kabobs, you know, stuff like that.

Mangos on a stick, well, that's just genius.  Adding lime and chile and tajin, and its a reason to stay alive.  =)

Early Morning Rant of a Heavily Medicated Person

So my right thigh has doubled in size.

 

I'm on this medication called Remodulin, and its one of my main lifelines. The purpose of the drug is to enable easier breathing and I can definitely tell its working fantastically. But its a subcutaneous medication (which means, basically, that I have to have it continuously) and it has a super short half life. If I am disconnected from it for longer than about two and a half hours, I have to check into the hospital to restart it; the drug is too dangerous and painful to just pick up where I left off. A dangerous amount of Remodulin is being pumped into me at a ginormous rate of 0.04 mL an hour. It works great, but I'm not gonna lie, its painful. Everything in my body is screaming NO except for my lungs. Breathing wins over pain, but then awake wins over sleeping. At least I can have a snack since I'm up.

 

Okay, back with my snack. Nom nom nom.

 

You know, it takes a while for the pain from this drug to subside from excruciating to tolerable. The docs and I try to keep one port active for as long as possible, and this one has lasted since January. I can't complain, that was a good run. But the adhesive wore out, and last week it just went kaputz. So I went over my options for the next site and remembered in the stomach was bad. Every time I would breathe or move it hurts. So I thought, I'll try the thigh. That way, I can walk it off, kind of like when you're sore from working out.

Wrong answer.

Oy. Within a day, my leg swelled so badly I could barely put pants on. And then it hurt to walk. But this is one of those expensive drugs, one that makes me a million dollar patient, so I'm not going to waste the cartridge full of meds (that would cost me 2 days worth of medication). So I stick it out, being the cheapskate I am, thinking it will get better. Annnnd, no. I'm sweating out the next day and a half. Finally, the alarm beeps to indicate that its time to change. Hallelujah! So I stick the catheter back in my tummy blub knowing it will be sore too, but at least I'll be able to walk without a throbby leg. Its been 4 days but the swelling has finally started to go down.

 

Now I'm watching the clock, wanting it to move quickly so it will be time to take another pain pill. But at the same time I have taken an anti-anxiety pill so I kinda don't care. Its fun! Or, at least, amusing. I saw a funny post on facebook that said, "If God is watching us, the least we can do is be entertaining."

Entertained, hmm? :)

 

By the way, sincerely, thank you all for the kind encouragement.

Just getting started, yo.

I don't look sick.

You know how sometimes people have paranoia about getting a rare disease and usually those fears are unfounded? Well, just because you're paranoid doesn't mean they're not out to get you. Up until 2011, I had yet to spend a single night as an inpatient anywhere, unless you count the first days of my life. Even with previous surgeries and procedures, the only time you found me at a hospital at night was when I was stuck in the emergency room, waiting for treatment, but I never ordered meals because I was never admitted. Talk about a rapid decline in health AND a reality check. To quote one of the doctors I used to work with when he found out my lovely list o' ailments:

"You're a walking time bomb!"

When I was first diagnosed with pulmonary hypertension, it was January 24, 2006. I was paralyzed but very much awake and aware during the treatment procedure (known as a Swan-Ganz) and I distinctly heard the doctor say, "I'm not sure if I can get her off the table." That same doctor looked me in the eyes after the procedure and told me I would be lucky to live through the weekend; my cardiac output at one point during the procedure dropped below one. Cardiac output ranges from zero to four, four is normal, zero is dead. In the previous month, the middle of December 2005, everything was going really well, health-wise, and then breathing became difficult. It made no sense. In one week, I deteriorated from playing volleyball to a short walk from my bed to the bathroom causing shortness of breath and dizziness. Even speaking a full sentence required a break. At work, I would have to answer the phone, "American Airlines," *breathe*, "this is Miki," *breathe*, "how can I help you?" *breathe* as if I had just finished a race.

I took two years off work to get better, and I had to cash in all my chips (I went from being responsible enough to buy my own home at 25 to living check to check). Anyone who makes it past five years post-diagnosis is considered a long term survivor, and every day I survived caused the docs to just shrug their shoulders, surprised that I was still alive. I'm still trying to figure out why as well. I have an inkling or two.

But unless you know what signs and symptoms to look for, I look pretty darn healthy. I get many a dirty look when I park in the handicapped spot. The problem is, I am sick. And not in the fun, twisted way, not just in my head, I'm not imagining this, its more like a nightmare I found myself in. Its your proverbial rock and a hard place, to have a fatal and thus far, incurable disease. Add being single, and its messy. People who already know me are amazing, but at the same time I can often sense some discomfort because, well, how close do you want to be to someone who is terminal? Is it fair for me to still want to find that someone who will have the courage to hold my hand while I die? I'm blessed to have lots of friends, really, really great ones, but I still sleep alone at night.

I've already outlived the expectations and prognosis, but its proven that I can decline rapidly.

I've also proven that I can come back.

So I'm in constant limbo, and there are no easy answers. Doc says I could live well into my 50's and 60's if I slow down and take care of myself, but who wants to give up tacos? There's also the hope for a cure: there were NO treatments until the mid 90's, and now there are nine with more in the works. But I HATE the fact that my life depends on drugs. I used to hate taking tylenol for a headache; now I'm on a pill regimen three times a day. Plus there's another medicine that is a literal lifeline, a painful pump that is never to be disconnected; its keeping my heart and lungs going. I can't compromise with this, its either pain from the site, or not breathing. Hmm. In January I didn't have enough strength to go from sitting to standing by myself. My first night out of ICU, I ate my dinner sitting on the couch because I couldn't stand. Right before this last Christmas, sitting up in a chair without setting off an alarm was a small miracle. Four months ago, you know what the physical therapist assigned me for exercise? Pushing the back of my knees into the bed as I laid there, ten reps, three times a day. Making one trip around the nurses station was my marathon, the nurses cheered as I pushed my walker loaded with my oxygen and monitors. Last week, I visited that ICU for the first time since being discharged. I swear, the nurses station was a lot bigger when I was living there. I only cried a little bit right before the elevator arrived at the 11th floor. And I only cried a little bit again after I left, but the second set of tears were more of relief that I was able to leave without a wheelchair. Silly, I know. But true.

I'm just getting started with blogging, so please be patient. I'm not going to promise that I'll post every day, or every week, or on any kind of regular schedule. I'm still learning, still trying to figure out where I belong, still trying to figure out where I want to end up, and which path I'm going to take. I wish I was still that kid that believed I would have my act together by the time I was 'that old.'

So its late as I'm typing, and I'm not sure how much sense I'm making right now, but usually when I write anything late at night, I get more emotional so maybe that's a good thing for writing purposes.

I should be doing more unpacking and purging of my stuff if I'm up this late, but at least I'm doing something...