Seven Stars

It's not a tumor.

Well, I got the results back from the x-ray and bloodwork yesterday.

The x-ray revealed nothing else horrible or serious, so they were fortunately able to rule out a blockage of any sort.  Here is the bad, slightly puzzling news.  The bloodwork did not reveal anything wrong with my liver or ... anything else.  Including pancreatitis.  As I was explained 20 years ago when I had surgery to correct the root cause of my pancreatitis (pancreas divisum, which caused stones to clog my pancreas and thus cause problems), they told me that amylase and lipase blood tests might not properly reveal increased levels, even if I actually do have pancreatitis.  So yesterday, the blood results seemed to have confirmed that.  I have every other possible symptom of pancreatitis, even it's signature stabbing from the front-to-back pain (not seen in many, if any, other abdominal type of pain), but didn't have the diagnostic test to match.  So we're hoping that simply treating it anyway with only drinking fluids for a few days should give it time to let things settle down.

So far my pain today is much, much better, thankfully.  I know it seems like all my blogs of late are about pain.  I didn't mean to come out of the gates that way... it's just the timing this past month.  Despite all appearances, pain is not all I talk about, even though I'm in quite a lot of it with Ehlers Danlos.

On that topic, I discussed my across-the-board increase in joint pain with my doctor yesterday as well, and he thankfully agreed to up the dose of my long-acting pain meds, so I can stop chugging my oral breakthrough pain meds as if I were Dr. House.  I think this will make for a much happier, less cranky, and less bitchy Sevenstars.  Then I can write about rainbows and butterflies and ... something.

Humbling Day.

I don't (and won't) generally write outright "I did this today" types of blogs.  But today, I suppose, will be an exception.

I went to the doctor's today for what was supposed to be a routine checkup, but the past few days had turned it into a necessary exam.  I've been having weird stomach pains which I dismissed at first, but after being accompanied by fever and vomiting, I knew I really had to go in.  Also the pain was getting worse and worse, up to the "this pain isn't fucking around anymore" level, which is never good.  I'm also the type of person that has to be bleeding from my eyes and at least one or two other places before I deem a doctor visit necessary.  When I finally did examine my symptoms though, it occurred to me 1. I was a fucking idiot, and 2. I probably had pancreatitis.

Back story:  When I was a kid, I didn't actually get diagnosed with CF until late - I was 8 years old.  Shortly after that, I got my first bout of pancreatitis.  Which is a big fancy word for "abdomen being mauled by a bear."  The treatment is usually some degree of not eating.  Usually with me they made me completely NPO (no food or drink by mouth) and gave me IV fluids to sustain me.  When it dragged on into weeks and weeks, however, they had to give me hyperal and lipids which are more robust IV nutrition - basically like an Ensure or Boost for your veins.  You never really realize how nice food is until you can't eat it for 2 months, I have to say.  By the end of that one bout, I was practically sneaking into the bathroom to eat toothpaste.  Also, torturously, it seemed like every playroom activity was to make pizza or ice cream or something.  I wanted to jump out of my little happily painted 7th floor window.

So today, they did all the requisite blood work to check for pancreatitis and I had a stomach X-ray to rule out something more sinister like a block or an exploded liver or something.  To get from my doctor's office to the hospital where all the x-ray machinery is, is an enormously long walk from the corner of one building... across an internal bridge... up and down several ramps... and finally up the elevator to radiology.  Today, not feeling well... they suggested I take a wheelchair.

Now, I'm no stranger to being shuffled around in a wheelchair while I'm in the hospital.  When you go for tests and such, they have transport take you, regardless of if you can run 10 miles or not get out of bed.  Hospital protocol or something.  But this... this was new.  This was the first time I've had to elect to take a wheelchair from clinic, because I simply couldn't walk.  I stared at the chair outside my appointment room and just wanted to call it all off, simply so I wouldn't have to take the chair. 

No, not vanity.  I wear oxygen 24/7, I am well beyond caring if people stare at me (and oh, they do).  It was just another notch in the CF belt, as I think of it.  Another step down the ladder where the ground floor means you're headed underground. It was not only humbling... it was saddening.  It made me angry and scared all at once.  I just couldn't handle feeling this sick today - with such pain - and this too.  But I did it anyway, and J shuffled me to and from radiology without complaint.  He even obliged and let me go when we got to the ramps so I could tear down them at breakneck speed.

I just felt today - again - like I feel so often.  When will this end?  When do I get a break?  When can I feel better for a little while?  And after seeing so many friends die, horribly, post transplant, I've ruled it out for myself, for now... after long deliberation.  I reason that I want to die of CF, not of kidney failure or rejection - or worse, on the table as they slip in my lungs-to-be.  I don't want to have to get so sick I am nearly dead... and to hope and pray for someone else to die.  But on days like today I wonder... should I die twice, so I can live once?

The Trip.

Well, I have returned from Boston (although it's been a week now, I suppose.) 

A quick summary - my dear friend Paul died last December but I was unable to go to his actual funeral then, as I was very sick and on IV meds.  This memorial for him, which was May 1, had been planned so far in advance, it enabled a lot of us (a total of 15 CFers and their significant others/guests) to make plans to go - some of us even traveling across the country.  Still, I felt like it was opening an old wound for a lot of people (mostly family) that did go to his funeral, and for them I felt bad.  This pain is bad enough once, to endure it all over again is insult to injury.  Then again, the pain from losing someone isn't a one-time thing anyway, so I guess it doesn't matter.

Also, I am sorry to have been a bad blogger and wait so long to write about what was probably the farthest road trip of my life thus far.  On to details! 

I met Paul's mom before we made our way through the cemetery for the internment.  She even knew who I was!  It is very weird to be called "Sevenstars" in real life, by the way.  I identify with it so much, though, so it didn't faze me too much.  I felt sort of a weird energy at the services.  I suppose it is partially because all funerals have sort of a weird/sad energy, and partially because many of the CFers there had never met in person before.  So people, such as me for example, were nervous around one another - and nervous about getting sick. 

Definitely a weird situation where you want to hug everyone but even touching is offlimits.  I felt like sort of the pariah of the group... I'm not sure if that was all in my head, or my oxygen made me seem sicker than I am, and thus I should be avoided. Either way, it was humbling and saddening - very lonliness inducing.  But, the memorial wasn't about me, so I was happy to have gone and participated in the celebration of all that is Paul.  There was a CD release party in the evening to release an album that Paul started while he was still alive.  His brother and a Chicago artist collaborated to finish the album and they performed it at Porter Belly's in Boston.  (If you live around there - go! The owners are nice, and the food and drink are great.) 

When I finally got home, I reflected on a lot of things.  I came to the conclusion that I was so nervous about catching something in the morning events, I probably looked unhappy or "keep away-ish."  Anxiety is lovely like that. I thankfully loosened up by the evening, and was able to simply enjoy the company of everyone that was there.  I felt like we all had been friends for a long time. (I guess alcohol will do that)  Even better though, I got to purchase a copy of Paul's CD, which I listened to on the drive home.  The drive home on Sunday was pretty fitting - grey, a bit windy, and rainy.  I was thankful that I wasn't sick like on the way up.

My final thoughts about the whole thing are actually just a general feeling of accomplishment (on my own seemingly trivial part - the exhausting trip), happiness that I got to meet and talk to so many CF friends and Paul's mom, and finally closure.  It was still unreal to me that he was gone.  Maybe still is.  We've lost a staggering number of people this winter to CF - and this is just counting the people I know of.  I would say our online community has probably lost somewhere between 10 and 20 people (some I've known better than others, of course) this winter... and the number is just growing and growing.

We had a lovely group shot of all the CF folks in front of what we later found out was Paul's mom's freshman dorm at Boston College.  After the rose glasses wore off from the meeting and memorial, I sat down and wondered... who will be the first to die from this picture?  Not something anyone wants to think about, but it's where my mind goes.  I wonder if it will be me.

 

So Much Pain.

So much pain.

Since it's the only thing I can think about, quite literally, I suppose I will write about it as well.

Starting oh, Saturday I guess, I've had slowly ramping up, excruciating hip, back and leg pain.  It basically feels like the lower half of my body between my knees and waist is being removed by a rusty hacksaw.  It's so unbearable I don't even know how to describe it.

I guess I'll just ask questions like I always do.  I like to get my readers (and me) to think more about the topic I write about.  So, have you ever been in pain so bad it causes you to physically cry out? (And you don't even have an audience or are not being overly dramatic)  Have you ever had pain so bad it envelopes your mind and body so thoroughly and horrendously that you can't remember simple things like, say, your name?  Have you ever had pain so bad you rock back and forth in a feeble attempt to make it better (even though we all know it doesn't work and just makes us look fucking crazy.)

Have you ever had pain so bad it makes you scream?

This is the type of pain I've had for the better part of Sat - Sun - Mon... and a little bit of today (which I am still calling Tuesday since it's dark!) since I can obviously collect my thoughts and sit down to pen a few words which now seem so pointless.  When you feel that sort of pain. nearly everything pales in comparison, importance-wise.  I think if my apartment burnt down while my car exploded and the Cathedral of Learning at Pitt actually projectile vomited from the earth and into the air and landed on top of my burning apartment, I wouldn't notice.  I might only notice if the burning building didn't kill me fast enough or the explosion from my car and the shooting cathedral vibrated the place and made my hips hurt worse.

Even my favorite Seven Stars can't help me.  They are little fucking dots in the sky compared to my colossal sized, firey, burning, world-ending pain. 

Where am I going with this?  First, I blame the remnants of pain for my disjointed post.  But really,  I guess it's a half rant, half question(s).  I question, mainly, all those lovely people that pop their bubble gum at the doctor's office and say "10" for their... tummy ache.  Of course, all while looking at the little "pain chart" with frowney faces (10 being a really big frown.  I mean huge frown here) that I suppose are intended to designate the varying degrees of annoyance. To those people - are you really just a good pain-hider, or have you never felt any sort of real physical pain in your whole life?  Is a broken nail an 8?  What on earth is a 1?  A sunny day?  A back massage?

I should write a positive blog sometime... I would promise one in the coming week but this weekend I am going to a Memorial for a dead friend, so that seems unlikely.  However, I am going to get to meet a lot of my online friends, so perhaps it won't be all bad.  I'm not Irish in the least but I feel like it's going to be kind of a Wake - a real celebration of the man's life.  He was a friend of so many, and we really fucking miss him. Here's to you, Paul.  I'm traveling 10 hours each way, by car, with being-mauled-by-a-bear pain, just to commemorate your life.  Even though I don't think you can see or hear me now.  I can think of you, and I hope your amazing life can live on in our many, many memories of you, and the people's lives you touched.  People are coming from thousands of miles away, all risking the infection risk with CF, just to say goodbye.  I can't say that many people would get that.

Addendum: My pain is caused by Ehlers Danlos Syndrome which I have in addition to Cystic Fibrosis.(Yes, I am aware of the luckiness of being born with 2 rare genetic diseases.  Please do not try to figure out how "lucky" the combination of 1 in 30,000 and 1 in 400,000 is, I can ballpark it.)

You know what, fuck my pain.  I'm going to a Memorial and it's not mine.  We only get one miserable go at this life and I'm not going to spend mine whining about things I cannot control.  I am still here.  I embrace this pain.  I'm alive.  Fuck this pain, fuck it.  It's just a roll of the die but why is a roll of the die bad or good?  It just is... it means I'm here.  I wish Paul was here to feel anything at all.

Can't can't can't

Sometimes, when I'm talking to others, usually J, I find myself very conscious of my discussion topics.  The undertone of CF in everything I talk about - how it sort of frames everything.  "Can't" on four sides.  Can't walk this far.  Can't do this thing.  Can't eat that thing.  Can't stay out that late.  There, four.  And in the middle of this frame of disappointment is me.  Wondering when everything became so fucking negative.  When did I last talk about doing things and having fun and having accomplishments and just fucking living life? I feel like a broken record with my CF ballads playing all day, one sad shitty tune after another.  My accomplishments are little hockey goal intermissions of Song 2 - big rushes of happiness lasting for about 10 seconds.  Hurray!  I took my medicines! ...back to being depressed.  Hurray!  I did my nebs! ...back to thinking about when I'll die.

Sorry this journal entry is all over the place.  I suppose I should have picked a topic. Just one.  This really could have been two entries.  One about "can't" and one about my ongoing CF monologue.  Oh well, I will pretend my backspace key is broken and soldier on.

It occurred to me today that CF is my undertone not only because it is my unchosen life's topic, but also because it is my chosen one as well.  This is because only recently I made the decision that I would advocate, teach and fundraise for this wretched disease as much as I possibly could.  And well, it's tiring.  When you're already doing the "behind the curtains" CF stuff that comprises our daily life, and then you go and "work" on the theoretical stuffs such as improving inpatient quality of life (how do we do that, by the way?), it gets really really tiring.  It would be like a ski instructor with skis that are glued to his feet.  He can never go home, take off his skis, kick up his feet and read a book. Nope, skis all day, all the time for him.  I've chosen to be a ski instructor and I don't regret that in the slightest, nor would I give up on it, but I just wish I could take off my skis once in a while.

Why we write.

I was looking at the very extensive blogroll on cf2chat (my go-to CF forum) and I wondered - why so many?  Surely there has to be some reason why nearly 100% of our population that has any online inclination has a blog?

Then the answer occurred to me.  It's quite obvious really.  We don't go out.  We're limited.  By the time we start searching for others like ourselves online, we're so sick that we're possibly housebound, listed for transplant, or just quite ill.  Maybe head-sick if we're not in denial.  Not always though - some people are quite healthy and still seek online communities simply because they are social folks.  I am not one of those.  Though now, I'm not really in the terribly sick category either. I'm "well" once again, at least for a short time, so I'm stuck in the middle, like I have been for much of my life.  Too sick to be normal, too well to have my sickness taken seriously.

Back to blogging.  Why then, do we choose to write out of all the things we can do from inside, sitting down?  I see so many kinds of CFer blogs.  Ones that document day to day life.  Ones that are very religion oriented.  Ones that are positive.  Ones that are negative.  Ones that are downright poorly written. Ones that focus on something else like books -  but in the background there is always CF. 

So why writing?  I've concluded that even if we find ourselves in the unlikely position of being temporarily healthy, there is always going to be something we wanted to do and didn't get the chance.  However, unlike "normies" we can't laugh it off and call a re-do.  Once we're past the point of, say, climbing up a mountain for fun, we aren't getting back there, ever.  So we write.  Anything we want done - we get done from the seat of our chair, or the sheets of our bed.  We travel to all the places in the world we want to go - inside our head.  We make friendships with other CFers that we could never have in real life - from afar.  We dance and we scream and we whisper, all in text, because we can't do these simple things anymore without the unwelcome addition of

COUGH

GASP

COUGH

So we write. 

It begins with a name.

I guess I'll start with the meaning of my username and blog name.  The purpose of this blog is soon to follow, though it's not even immediately clear to myself.  The subject matter will be everything from college stories to Cystic Fibrosis advocacy to death, that much I know.  I know because they're my stories, I just need to tell them.

Seven stars refers to Pleiades which is a star cluster (of which only 7 stars can commonly be seen with the naked eye) and has quite a few interesting stories related to it.  It's mentioned many places in folklore and literature; everywhere from the Bible to Homer's Oddysey.  The general story from Greek Mythology is that the stars refer to 7 sisters, who were the daughters of Atlas.  I won't reiterate all the details here but that is the jist.  If you like, I included the wiki link up there so you can check it out.

Basically when I was choosing an online name I wanted something astronomical (not astrological) in nature.  I've always loved the stars and astronomy for as long as I can remember.  Seven is also my birthmonth - July - but that was a happy coincidence instead of part of the decision process in choosing the name.  Cystic Fibrosis connection?  I would say it doesn't have one directly, but looking at the stars has always made me feel insignificant.  So when I'm having big CF problems, looking skyward reminds me that, speaking in very astronomical terms, my problems are quite small, and quite insignificant.  That usually brings me back from bemoaning life's problems.  Usually, but not always.  Feeling small and unimportant is a good way to lose yourself, I have to say.  It makes things like proper punctuation on this blog seem downright fucking worthless.  I'm still going to try my best with that, anyway.

Test.