Losing my words

I'm not sure I can think anymore.  I'm not 100% sure my mind works anymore.  I think for the longest time, I was afraid that I wasn't going to be the same person on the other side of this thing and now my greatest fear is that I am.

You Can See The Sun Shining if You Really Want to

Any that's spent 5 minutes reading my blog knows that over the last several years, me living out that year wasn't always as certain as it should be relative to someone my age.  I've only had close encounters with the possibly of not seeing the sun rise the next day maybe about 4 times, but other than that, my basic survival was in question for the last 3 years because of my failing health.  What have all these brushes with death taught me?  They've taught me the importance of regret.  They've taught me the importance of love.  Most importantly, I've learned that there are only a certain number of things in life that I can actively control.  Sometimes a shitty situation is a shitty situation and you've gotta take it for what it's worth.  Sometimes, you've gotta concede defeat in order to continue the war.
Lately, I'm having difficulty telling who the good guys are.  I guess war is a bad analogy when trying to describe your life, but if nothing else, I've been battling, trying to get up the hill, and back to myself.  Of course, I would have absolutely zero chance if not for my incredible (perceived) support system.  For the past few days, I think my neuroses when it comes to the people around me has been getting the best of me.  I think it might be a product of the fact that in one way or another, I don't remember really being alone for any extended period of time for the last 5 years.  I've always had someone around or at least close by because of the seriousness of my health. Unfortunately , it seems as my physical health improves, I might be exposing my frayed mental health.
This all started when Anita left a week ago to visit her about-to-pop pregnant sister.  In the weeks leading up to her flight, I joked around with her that she's clearly making a terrible decision and who knows if I could survive by myself.  I'm beginning to think those jokes were really some sort of panic attack by my subconscious.  What's troubling of that I haven't even been ALONE for any extended period of time, yet.  Really, since she left a week ago, I think I've maybe spent about 30 hours or so by myself.  Thanks to a few of my better friends and my nephew's birthday, I've been spending most of my hours with other people occupying my mind.  Tonight marks the first night that I will be in a stretch of a week by myself and if tonight is any indication....  Uh oh.
I don't really know what's wrong with my head.  I don't recall ever being this neurotic.  I'm actually complaining about the sincerity of the people in my life while also writing (typing?!) that in the 2 weeks that my wife is scheduled to be away, I've had or have scheduled things to do with other people on every day but 4.  You would think a 33 year old man could survive 4 days alone, right?  Only 2 of those days are consecutive!  Pull it together, man!
So what I'm trying to say I know I'm crazy, but am I?  I've always been adept at reading people and assessing the situation, so either what's going on here is that my recovery has somehow caused a short-circuit in that ability OR there is an actual issue with the people that I count on.  The people that I REALLY need.
I know that some of the signals I've been receiving in my head are simply just the crazy going out for a walk.  The other day, I friend was tagged in a photo embracing another friend and it triggered a pang of jealousy.  I couldn't understand why I wasn't privy to such embraces.  From that moment on, I basically lost control of my sense of confidence.  Even after I came to my senses and remembered the COUNTLESS times said friend and I have really had no issue with tactile affection and there are numerous pictures of us doing so.  Displayed.  In my apartment.  All the time.  Still, to continue the metaphor, you can't call back the dogs of war. 
I started to see it everywhere.  My family.  I spent time at my sister's house both for my nephew's birthday and for the party for his birthday.  I don't know why, and it was nothing that anyone did, but something didn't feel right.  Somewhere around the time I started dating Anita, my relationship with my sister changed for the better.  Before we had a cordial relationship, but not really as loving as you would think a brother and sister would be.  I keep linking it to me dating Anita, and I'm sure that played a part in it, but really my illness as difficult as it was, had the happy side effect of really bringing my sister and I together.  Since that change occurred I've always felt at home whenever I've been in her house.  For some reason, when I visited them for my nephew's birthday on the 8th (I actually came the night before because I wanted to bake some things for him on his birthday - he loves that) I had this uneasy feeling.  At this point, I can only attribute it to my own ridiculousness, but that doesn't mean it wasn't there.  In fact, last night I had to get some prescriptions filled and I found out the CVS by her house wouldn't tell me if they carried the meds I needed.  I should've gone to the CVS and inquired in person, since the drugs I take are pretty powerful and subject to abuse by pill poppers, I think the pharmacist was just being cautious.  Much to my dismay, my first reaction was relief.  Relief that I would have to go home and be back in my "safe zone."  About an hour after I told my sister that I needed to go home and refill my meds at my local pharmacy, I realized that I had enough medication to last the night and the next morning.  In order to follow the prescription, I would need to be home by noon-ish .  I wrestled with it.  Part of me still wanted to go home.  Luckily, my better angels prevailed and I told her that I could stay the night.  My decision to stay was even protested by my mother who said that I need to stop jostling (I don't know how I jostled, any uncertainty all played out in my head) and that she had already moved her bags to the door and for some reason, that meant the decision to return home was final (I brought my mother).  My initial instinct was to give in and go home, but I fought it off.
I've been fending off similar feelings with people that are less attached to me by blood.  I think I've been perceiving really minor happenings into signs of problems left and right.  I find myself being more polite, as I would with a lesser friend, with some people.  I find myself challenging friends over nothing.  Over things that we've been chiding each other with for years and years.  For more than a decade.  I find myself feeling as though I'm imposing when I have invited myself to events with my friends numerous times.  It's almost expected at this point.  If someone is doing something, usually, anyone can jump aboard.  Why am I feeling so secluded?  I've spent the last week SURROUNDED by loved ones and I can't shake this feeling.
Am I afraid that as I get closer to the other end of this journey that I am so changed that the people in my life won't recognize me anymore?  Not value me anymore?  So much about me has been forever altered by this experience.  There are so many things that I wish could go back to the way they were (like my weight!) but I'm realizing more every day that they can't.  This thing that affected me has left its imprint.  In exchange for these unchangeable alterations, I get to live much longer than I would have without them.  Was it worth it?  What's worth feeling so alone?  I know that I'm crazy, but have I really gone THIS crazy?  Am I questioning my self worth?  As I get better, am I still me?  I'm not sure I want to answer that question.

Welcome to the Shit Show

It's amazing how one thing going wrong in your life can so easily turn into a titanic sized clusterfuck.  When someone turns on the light, everything that you've been hiding in the dark starts casting a shadow.  Sometime, shadows make it just as difficult to see as the dark.  This whole thing started because I was sick.  I was sick beyond what I could handle.  Beyond what anyone could handle.  Beyond comprehension.  Every time I mention to someone that I've had a stem cell transplant, their eyes bug out of their heads.  "But you're so young," is the universally accepted response followed by other useless platitudes.  It's true.  I was young.  This final process started when I was just 27.  27.  I can't even imagine it anymore.  When they figured out what was wrong, I was given almost a year to process the fact that a transplant might be in order.

But really, nothing could prepared me.  Nothing could prepared us.  After I came home, I remember my friend came over and as soon as she saw me, she threw her arms around me and hugged me as hard as I've ever been hugged.  I have to admit, I didn't really know how to react to it.  Sometimes, even to this day, it escapes me that it's not just me that's affected by my illness.  That the people in my life all have some sort of stake in my survival.  Of course I knew that my family (for the most part) put my needs first to the best of their abilities and of course there was Anita.  To this day I don't know how she did it.  The nights sleeping on that hospital bed.  Giving up entire summers in the years she should be out dancing and drinking until the entire night is a blur.  Those are the nights she spent sitting in my hospital room, holding my hand, and watching Sportscenter.  Looking forward to sleeping on an unforgiving convertable chair/bed/torture rack, I still don't know how she held on.  The only thing I'm sure of is that I would not have had the strength in her place.  I've always been the weak one.

I'm also amazed by how much my friends have been looking out for me.  Of course, maybe they're all in it for the services of a permanent designated driver, but I guess I can give them the benefit of the doubt.  I have had friends drive me around, rearrange their schedules, I've had friends travel from Florida just to visit me. Encouraging text messages, helping me up stairs, understanding last minute cancellations, hospital visit after hospital visit, these people have truly proved their worth.  Don't the deserve a break?  Doesn't everyone deserve a break from all this?  Don't I fucking deserve a break from all this?  Doesn't my wife deserve to live her life like any one of her peers?

Now that I'm almost 3 years removed from the actual transplant, I can't believe how far I've come and at the same time, how distant the goal seems.  I sat today with my neighbor recalling all the times that I was rushed to the hospital because my blood counts were so low that I needed an immediate transfusion.  I mused at how difficult it was to find matching blood for me after 2 years because of all the antibodies.  I sat and thought about and recited that my current condition is bad, but what I was going through before was much worse.  Granted, I'm not going to the ER every 3 weeks, but how much better is my standard of life right now?  I keep trying to tell myself that I'd do it all again, but honestly, 2 weeks before my 3rd "rebirthday," I'm just not sure I would.
Of course, the physical issues that have been a result of the GVHD have been awful, but I think just the sheer amount of time that I've been in this almost state of limbo has taken an immense toll on me mentally.

I've been in therapy for over a year and it seems that as my body is recovering that my mind is just purging all the darkness it held inside.  All these absolute gems have surfaced from times that I've so long forgotten that I just didn't think I would be dealing with.  How am I supposed to cope with my shitty childhood and my recovery simultaneously?  Is that fair?  To have to deal with the evil I experienced in the years I couldn't protect myself and the illness I developed through no fault of my own?  How can I my mind hope to resolve when my body is taking so long?  I'm just not sure this is going to turn out like we all wanted.

Lately, I've been listening to a lot of sad songs and having a lot of questionable thoughts.  I'm plagued with thoughts of ways to stop the pictures from flashing through my mind.  One of the side effects of all the medication I'm on has been that I tend to have an averse reaction to alcohol.  If I go out with my friends, I am now normally the designated driver because I just can't drink anymore.  Over the last week or so, while I'm laying in bed all alone, the only thing I can think about besides absolutely awful memories are the thoughts of going to the kitchen and drinking myself into a stupor and falling asleep.  I think of taking more morphine that I'm supposed to in order to help clear my mind.  To just make it go away, ALL of it.  If only for the next hour.  Lucky for me, I hear my wife breathing as she sleeps and I couldn't do that to her.  I've seen what addiction did to my parents' marriage.  I've seen what it turned my father and my mother into.  No one survives addiction, so right now my better angels have been prevailing, but I'm not sure how long I will hear them.

Everyone has a sad story. It doesn't excuse anything.

I've always been able to brush things off.  Everything.  At least, I've always been able to push things to the back of my mind and brood on it when I'm alone listening to the angry music I thought I gave up on long ago.    I've had my share of problems.  I've made my share of mistakes.  I've seen my share of curve balls.  Every single situation, I've dealt with and moved on in one way or another.  From bad breakups that cost me friendships to problems growing up without a real father figure to looking for attention in all the wrong ways.

I'm fucking 2+ years out from this stupid bone marrow transplant and it still defines almost EVERYTHING I do.  I just spent a weekend with 2 of my absolute best friends in the world and I had to sleep for the equivalent of an ENTIRE DAY just to regain my strength.  What did we do that was so taxing on my body?  Oh, just walked around a museum.  Went out to eat.  Argued baseball with strangers. In bed around midnight.  Crazy, right?  When is this going to end?  People tell me to revel in the small victories I have here or there but what?! How?  How can I do this when I expected so much more? How can I do this when I want so much more?

Everyone tells me to compartmentalize, great advice.  Now try it.  Seriously.  Try and separate yourself from something that rules your life.  Imagine having a shitty job with an absolutely shitty commute that pays a great salary.  Is money going to fix the fact that at least 5 days a week you're in hell? If you were looking for another job, wouldn't those factors come into play?  The difference with me is that I don't have another choice.  This is all I got. My entire existence is ruled by this thing.  This decision everyone and I made a long time ago.  We all thought it would be over now.  We all thought I'd be back to me.  I'm told to "just realize I'm living a different impermanent existence".  To blame the disease and not myself.  You know what?  It's not that easy.  How long is impermanent impermanent?  This is going on TWO YEARS of issues.  TWO YEARS? If you stick a needle in someone's arm, at some point no matter what they're going to become an addict.

You know what's funny?  During this recent Presidential election season, we were bombarded with slogans demonizing so-called "takers" and societal "moothers".  When do I fall into this category?  What does the clock start ticking?  When do the whispers start among my family friends that I'm somehow milking this?  When does public opinion sour, if it hasn't already.  How fast do I have to run to get away from that?  How many pills much I swallow every day to avoid the jagged little pill of the inevitable backlash.  I see everyone's lives progressing without me and I hate it.  I hate it to the point where I decided I need a little break from social media.  Seeing everyone else be so happy without me can't be good for my psyche.  I don't know.  This is so difficult.

Maybe I'm just over exaggerating.  It's just so hard to live each day without feeling helpless and shame.  Unfortunately, I'm afraid this might never end and I'm not entirely sure how to deal with it.

Shit just got real

Today was the first Father's Day since I was 5 years old that I could l celebrate with someone that can legitimately call me son.  Not only that, he's one of the best dads I've ever met.  My father in law has COMPLETELY devoted his life to his children.  And what did I do?  I stayed home.  I was too sick to go anywhere this weekend but made sure that Anita went.  I felt so terrible.  I feel so isolated by all this.  I was so ashamed, I didn't even call him to wish him a happy father's day.  Way to get off on the right foot, Paulash.  Ugh.

This disease is taking my soul.  Slowly and painfully.

When great is just being normal.

While most people are looking for something special to punctuate their lives, at this point I'm just looking for a sense of normalcy.  I'm looking for a brief respite from fighting to just feel normal for a change.  The few chances that I get at it make me feel great.  The main problem is happens to be that the opportunities to feel like me are running few and far between.

On a normal day, I wake up at about 9:30 and take engage in my morning ritual.  Most people have the SSS (shit, shower, shave), I have an added S for Self medicate.  I throw on my "i feel sick" robe and sit down by our TV.  If I'm feeling extra sick,  I climb back into bad with my beautiful wife and see if I can avoid falling into her trap.  You see, once Anita senses that I am back within her reach, she sets the trap.  She'll have me wrap my arm around her and she rubs my head.  If she's able to execute it right, we're bypassing getting up, eating, getting ready, and going straight to 5 hour nap mode.  She's so evil!  She knows how much I hate wasting away in bed but she doesn't care, she just wants the snuggle for her own agenda!!!!  But I digress

Normally, after I wake up , I flip between the news and Sportscenter.  This way I know if there are attacks on the way from Iran or Mike.  Once I am versed on the sports and news of the day, I get ready to... Wait.  That's basically what I do.  Isn't that miserable?  I basically have to stare at the clock to know when to take my pills, when to awake, when Judge Alex comes on and THAT'S it.  That's the vast umbrella of my responsibilities.  Aren't I a bit more than a watchgazer?  Just waking up, spend 15 hours doing almost NOTHING of consequence, and then here my phone beep to let me know it's sleep time.  This pattern has seldom deviated from and it seems as though every time I do deviate, while the activity feels great at the time, depending on the activity I might suffer for it for months.  This routine is seldom broken and each time I try to and fail, anger, frustration, and sadness well up in me.  I've been going through this stuff for more than a year now, How is that possible?  Aside from this disease (and now the weight the cure has burdened me with) afflicting me on and off for the last two years, I've really been a relatively healthy person.  It's just that when things go wrong, it seems a lot worse.  When most people push them self to the limit, they get better and their body's get stronger.,  i have the exact opposite effect.  My body absolutely fails and I regress.  I get sick.  I'm bedridden. Worst of all, I'm mentally annihilated.

But now...  What I'm going through now is completely unprecedented.  I've never had so people either say or imply the word 'setback' to me.  Sometimes I become utterly frustrated with what seems to be the fact that every time I try and put a date on when I'm going to be at least feel well enough to go back to work, by body reminds me i'm not in charge.  Nothing makes a recovering patient feel less in control this circumstance.

I guess my biggest worry is just when.  When am I going to feel better?  Everyone keeps warning me not to put any timelines and let my body heal at its own pace.  I am also scolded about going back to work last year against better medical advice.  I'm just sick of it.  I'm sick of seeing everyone else living and me just hanging around.  Facebook has really destroyed me.  I see everyone so happy.  Spending time with their loved ones.  Traveling to all different places.  I WANT TO DO THAT stuff.  I don't know, I guess I'm just losing hope.  I'll have to find some somewhere.  blurgh

Up and Down

You know, I was never one for roller coasters.  I mean, I've been on my share of emotional roller coaster relationships , but that's a blog for another time in another circumstance.  I'm talking about physical roller coasters at amusement parks.  I've never really liked them as I have a fear of heights and I don't really like not knowing what's going to be around the next bend.  Funny enough, I think it's for these same reasons that my wife actually REALLY ENJOYS roller coasters and will stop at nothing to ride one if she's within visual range.  She is a rock and is afraid of nothing.  I guess that makes me the spineless wimp that's afraid of everything and we come together because opposites attract.

I digress, anyway.  This photopheresis thing seems to be working, but the results are kind of like rinding a roller coaster.  I've been to treatment five times.  One time, I felt so good that I actually went to the treatment completely alone.  Drive myself down to Philly and back without any problems.  Another, earlier time I fell asleep before we even exited the parking garage I was so exhausted.  I ended up sleeping for the rest of that day and into the next morning.  Completely out of character for me to sleep late.

So, now my body is a bit more accustomed to the procedure, yet the results are still somewhat like riding a roller coaster.  Overall, I would definitely have to say that I feel better.  I feel much better and what's more is that I feel optimistic.  I think, as slow as it's going, I'm getting to a better place and that's all I want.  How crazy is it that I'm living my life right now just to get back to work?  Who knew being a semi-productive member of society could mean so much to someone.

Unfortunately, with the way the treatment has been going, the after effects have been somewhat unpredictable (like a roller coaster).  Last week, after BOTH treatments, I felt fantastic!  Great enough to see some people that weekend and have lunch with Mike.  I even called my boss to let him know of my progress (a phone call I've been avoiding as to not have to convey such massive failure).  This was looking up.  I was starting to see people.  My life was slowly starting to take shape again.

Then this week's procedure hit me.  The first one was fine.  I came home and was a bit tired, but certainly not OVERLY fatigued.  After Wednesday's procedure, however, I was completely annihilated.  I've been reeling for two days now with aches, pains, and overwhelming fatigue.  My hands have been tingling all day like they are not getting enough blood and that makes me nervous. 

I'm hoping that by tomorrow, everything is at least where it was.  I have a big weekend coming up and I'm nto going to let some GVHD ruin it.  Right?

Ugh..  When will this all end??  When can I get back to being me?