Tuesday, December 21, 2010

The Reason For The Season

Joshland Note: After this post, I am taking blogging break for the holidays. My heart needs to heal as does my body. No worries, readers! I will be back - rejuvenated and ready to write again. I am lucky, I am living, I am loved. Nothing else matters.


"We just don't have anything nice." ~ A statement I overheard from a woman walking out of well known retail store with 2 BAGS WORTH of toys/electronics and loading them into her huge, brand new SUV on 12/2/10


Tis' the season, boys and girls. The season of love, friendship, giving, and... complaining about not having nice things?!?! Come on, lady! NO NICE THINGS? Really?

Nice is such a subjective term. One man's trash is another man's treasure, or so the saying goes. What I might think is wonderful, you might think is "quaint"and quickly turn your nose up at it. What you might call a "life or death" item, I might call a waste of time and money, which would force me to smash a Boston Creme pie - the one that I keep on me at all times in case of emergencies just like this - right in your face, knocking some sense into you.

Thankfully, I feel like I've surrounded myself with people that appreciate and have worked HARD to earn the extra little luxuries. They are thankful and do not complain very often. I can't blame you if you do forget. Appreciation is such a simple thing lose track of during the stressful holiday season. Fortunately, because of my positivity/paranoia...I will never forget.

My wife and I are very lucky. We have a roof over our heads, food on our table, and a place to rest until the morning comes. We have some nice things, but I actually have a guilt complex about it. I have "buyer's remorse" no matter how big or small the purchase is. I have no sense of entitlement to anything I have. Don't misunderstand me, I most certainly have complained about not having "extras" or saying "I want this" or "I need that". If I said otherwise, I'd be lying. But I guess I don't feel like I deserve a lot of the stuff I have.

My reasoning?

There are people that have struggled with life so much more than I probably ever will...my sister, for example. I have an unquenchable guilt about that. Sometimes I wish Angie and I could've switched places because I think she'd have done a better job with her life than I have with mine. That's maybe not the best thought process and certainly not logical/rational/forseeable, but you watch your sister die from the same disease you have and see how well you cope with it. It's been 17 years and I still struggle with how I could have been a better brother and how I'd give anything to still have her here telling me what to do.

I've also seen terrible, horrible, life changing things happen in an instant. In May of this year, a high school classmate of mine was assaulted. Someone hit him and he struck the back of his head on the sidewalk when he landed on the ground, causing him to suffer a traumatic brain injury. After months of fighting valiantly to live, his family and friends laid him to rest in early December. Peaceful thoughts to you, your family, and your friends, Adam. Both of these examples are the things of life I do not understand and never will.

I feel like I've been lucky. Many times in life it's better to be lucky than good because - as I've said more than a few times - "Life is what happens while we're making other plans." (Actually, I believe John Lennon originated that quote, but let's not squabble over words right now. I'm trying to make a point and be all wise 'n' stuff. Stay with me...)

INITIATING MY "NON-FICTIONAL RECURRING DREAM" RECALL SEQUENCE:

Sometimes (more often than I'd like to admit, really) I have vivid nightmares about the future. A time when we might lose our steady income or health insurance. I'd get really sick and we'd have to sell all of the stuff we've worked so hard for just to pay off our debts and not even come close to breaking even. A time where we'd live off of the kindness of others and move from house to house based on who'll tolerate us living with them the longest. Things would get so bad that we'd have to give up our dogs because we couldn't afford to take care of them anymore. Between bouts of sobbing, we'd work so hard to make sure they went to a loving family who would baby them as much as we do...or "did" in this case. I imagine my wife staying by my side, but I'd always feel guilty for putting her in this position. I know it could be her who gets sick (I certainly hope not!), but statistically, it will most likely be me (thank you CF) and that's the scenario that plays out in my nightmare. Other details weave in and out of this nightmare seamlessly, but essentially the end result is this:

We lose EVERYTHING and it is ALL MY FAULT!
Despite my best efforts, I am a bad person and a bad husband who can't even take care of himself, let alone his family.

A bed-quaking body shudder pops open my eyes where I lay, soaked in a pool of my sweat. My eyes sting from the salty beads that got stuck under my eyelids, proving it IS possible to cry in your sleep. I look to my right and there is my beautiful wife sleeping away, engulfed by a grey and blonde dog. To my blurry, stingy, eyes they look like a cute Muppet mutant. They are snoring that cartoon snore where one character whistles and the other two snort. (My wife does the whistling...you're welcome, sweetie. ;-)

I hop out of bed and snatch my semi-scruffy robe from it's hook in the bathroom, then head to the kitchen for some late night hot chocolate to calm my nerves. Reverting back to a childhood staple is one of the numerous ways I bring myself back to reality. The reality that we are going to be okay. That regardless of the paperwork, the medical forms, the fighting with insurance companies, and the inevitable future I've seen for myself far, far, down the road...I am okay. I am lucky. I need to remember that and treasure the tranquility of security because I am not entitled to it or any other things that come with it. No one is.

So I'll give the woman with the boatload of gifts the benefit of the doubt. She could have been having a bad day. Maybe she IS appreciative of her situation. Maybe it's a volunteer vehicle on a shopping spree for 'Toys for Tots'. MAYBE she's a volunteer who just lost her job and can't even afford to pay her heating bill this month, but is still helping others. I kind of doubt it, but I've been wrong before. LOTS OF TIMES. Either scenario - the quote at the beginning or the hypothesis I just stated above - makes me sad.

During this holiday season one or several of these things have happened or will inevitably happen to you:
  • You'll be so pissed off that you missed out on the one item you want so badly or that someone will give you the similar generic item without all the 'bells and whistles' you wanted. If you wanted actual bells and whistles, you'll get a trombone and use it as a hat rack for a year, consumed with anger every time you reach for your sombrero of choice.
  • Your Aunt Mildred will you gift you a shitty crocheted hat and mittens. Crocheted mittens and hats are normally great, but these things are just tragic looking. One ear flap will be longer than the other, the left glove will be missing a thumb, and they are a mix of "Pepto pink" and mucus green. You have to pretend to like them or your parent/significant other with disown you. Over the winter, you WILL see Aunt Mildred and will be forced to keep the shitty crocheted hat and one-thumbed mittens on you...just in case she asks to see you wear them.
  • It'll be -30 below windchill and you are out shopping for presents. You've ended up with the magical parking spot furthest away from the mall. It is so far away, you might as well have walked to the mall because you are parked 15 yards from your driveway. By the time you walk to the to the mall from your spot you can't feel your feet and spend more time trying to warm up than actually shopping. You have to go back again tomorrow because cyber-shopping is impossible thanks to the cyber-gamers who are hogging all the internet bandwidth in your house/apartment building/college dorm.
  • Someone will ask you when you are going to: get married/have kids/get a job/go to college. Perhaps they'll ask you why you: got divorced/lost your job/can't control your kids/couldn't have cooked something better or some other insulting/probing question and you say ('Insert the same thing you said to them at Thanksgiving' here).

Just remember...you are lucky to have whatever you have. Tomorrow it could all be gone. I know that everyone who reads my insignificant little blog understands what I'm trying to say. You love what you have in your life and share your success with others, be they big or small. Thank you for that gift of generosity you give all year round. It is special.

It is with all the sincerity and warmth in my heart that I wish you Happy Holidays, regardless of what holidays you celebrate. Be good to each other and love one another every day.

Peaceful Things and Happy Holidays To All,

Josh

Wednesday, December 15, 2010

(Almost) Everything You Need To Know About Surviving Your 1st or 101st Hospital Stay: Written By My Sister, Angela

(If you would like to share this with others, please link to it on your blog rather than reposting it. Thank you for understanding how protective I am of my sister's legacy. :-)

Joshland Note: I recently rediscovered a book that Angie started writing when she was in junior high school, circa 1991. To give you some perspective:
  • George Bush was the president. Not "W", but his pop.
  • "Operation Desert Storm" was in full force in Kuwait.
  • The Minnesota Twins won the World Series in a classic against the Atlanta Braves.
  • Grunge music exploded onto the scene, with bands like Nirvana and Pearl Jam leading the way.
And here was 14 year old Angela penning what, as of today, was one of her legacies to her family, friends, and the CF Community. It was more of a manual of sorts. A "how-to" guide of CF hospital survival, if you will. She was wise beyond her years, well spoken, witty, and willing to share her story with the world nearly 20 years before the internet, blogs, and social networking were the norm. While she never got to finish writing her book, what she DID write transcends cystic fibrosis. It has the power to help anyone who has ever had a chronic illness or life altering condition. Angela wanted to guide her readers through something she knew far too much about: Being a patient. The stage is yours, Angie:



SURVIVAL RULE # 1: IF YOU DISAGREE, DISAPPROVE, OR HAVE ANY DOUBTS WHATSOEVER (ABOUT WHAT IS HAPPENING WITH YOUR HEALTH CARE), THEN ASK AS MANY QUESTIONS AS YOU WANT.

Those darn interns. You know the ones I'm talkin' about. Those "Junior Doctors" as we'll call them, who come into your room and act like God. I don't know about you, but there have been a few times, no, make that A LOT of times, when I have wanted to tell them a thing or two. I actually HAVE a good deal of the time. If you do have to tell them a thing or two, be firm, but don't come across as a jerk. I've come across as one a few times and it doesn't help things at all. Remember: it's YOUR body. Not theirs or your parents. YOURS. Survival Rule Number 1 applies to all types of doctors, residents, fellows, specialists, surgeons, etc... Also remember when it comes to dealing with "Junior Doctors", if you want to speak with someone higher up don't be afraid to ask. It's YOUR choice.

SURVIVAL RULE # 2: NEVER LET ANYONE DO ANYTHING TO YOU UNLESS YOU'VE BEEN TOLD IN ADVANCE BY THE DOCTORS.

We've all been through it time and time again. Just as you feel that tinge of relaxation coming on, someone comes into your room, smiles that ever-so-fake smile and stupid looking smile and then says to you sweetly "It's time to draw some blood." or "Don't worry, it's just a small shot." Oh, Puhleeease. Give me a break! NEVER LET (THE HOSPITAL STAFF) DO ANYTHING TO YOU IF YOU HAVEN'T BEEN TOLD WHY IT NEEDS TO BE DONE! If you are the parent of a patient or a patient who is able to answer for yourself, you have the right to know every detail.

SURVIVAL RULE # 3: WHEN YOU ARE BEING POKED (WITH A NEEDLE) FOR AN IV, BLOOD TEST, OR ANY OTHER REASON, MAKE SURE THEY KNOW THE "GROUND RULES".

AND...


SURVIVAL RULE # 4: IF THE FIRST PERSON CAN'T GET THE JOB DONE AFTER TWO TRIES, TELL THEM NICE, BUT FIRMLY TO GET SOMEONE ELSE.


These, for me, are the most stressful parts of a hospitalization. In fact, I used to just call hospitalizations "Getting IVs". "Getting poked" is no fun for anyone whether you are 60 days old or 60 years old. If you are in a teaching hospital (a university, for example) that means the "Junior Doctors" are either fresh out of medical school or are a few years out of it and are on their internships or residencies. This means they need to use you to get first hand experience doing their jobs, so it'll most likely be a "Junior Doctor" who wants to put your IV in. Mind you, this doesn't mean that they are the best at putting IVs in. It just means they get the first crack at it.

Every time you get "poked", the odds are that it's going to hurt. Maybe not a lot, but I GUARANTEE it's not going to feel good. Make sure you tell them the "Ground Rules":


  • They get 2 pokes.
  • No digging in the vein to their little heart's content with the needle.
  • Put the tourniquet on the sleeve of your shirt.
  • Do not take the needle out with alcohol.
  • If they don't get it in within their two tries, they have to find someone else.

You may get resistance from the "Junior Doctor", who may say things like "Just let me try one more time." or "If you wouldn't have moved, I would have gotten it!" Of course, it's up to you if you let them try again, but use your best judgment. When you ask for another person, request someone with a lot of experience. Remember - don't feel bad if you ask for someone else because it's you or your loved one that is going through the pain.

SURVIVAL RULE # 5: BRING THINGS THAT MAKE YOU FEEL AT HOME, AND NOT LIKE YOU ARE IN A COLD, STERILE DUNGEON.

Being in the hospital can be depressing enough and those boring rooms don't help either. Here are some of the basic, but comforting things to bring with you:

  • An afghan or a special blanket to put on your bed.
  • A stuffed animal, favorite books, movies, or music, your own pillow from home.
  • A family album and a picture of your pet (if you have a pet).

Everyone has different things that make them feel good inside and the more you bring with you, the less scared and homesick you'll feel.

SURVIVAL RULE # 6: GIVING IS THE BEST MEDICINE OF ALL

Sitting in the hospital can be very boring. No, let me rephrase that: Sitting in the hospital IS very boring. That is where practical, fun gifts come in. I'm not saying flowers and gifts aren't nice, but they can be expensive. The kind of gifts I'm talking about are kind that make the patient less starved for the real world. Here are some suggestions that I'm pretty sure will brighten the day of that special patient in your life:

  • Bring a favorite movie or TV show to the hospital and watch it with them.
  • Bring a favorite game to play. Make a favorite meal, bring in something from their favorite restaurant, or bake them a treat.
  • But the best gifts of all are frequent calls and visits from family and friends!

Love,

Angela

Joshland Note: This was her rough draft with some very minimal editing done on my part. Reading it makes me smile because I know that if she had decided to blog, it would have been AMAZING. Not only was she a CF expert, but she was so tuned into all facets of the world: politics, medicine, philanthropy,...you name it, she had an educated opinion on it. I don't know many people who started watching CNN at twelve years old. Meanwhile, her grown up brother writes about his moments of juvenile delinquency and plays with a puppet. Can you say...different? What if we would have blogged together?! She'd have been the news and I'd have been the human interest piece (I use that term very loosely). What a team we would have made! Welcome to AngieTown and Joshland. :-)

I agree with every word of this story, except the part about "not being a jerk." You don't have to be a jerk, but in my lifetime with cystic fibrosis, I've learned an unfortunate truth: Occasionally, being a jerk is the ONLY way certain medical professionals will listen to you. Normally I am not a jerk, but I do challenge my doctors, nurses, and RTs, etc... because that is the only way I can protect myself and it's only way they will EVER get better at their job. That includes both their skills during medical procedures and in their bedside manor.


I was relieved to find out during my last hospital stay that the Vascular Access Team at the U of MN coincidentally instituted Angie's "2 poke rule" into their code of ethics some time ago. Angie had terrible veins and even after getting a porta cathe (permanent IV line), she still struggled with blood draws and needles. The tears would start at the mere mention of them. It's getting better, my sweet sister. :-)

You want to know why I do what I do with the puppet? Yes, I do enjoy creating those videos, but the real reason is because there are kids that have to deal with things like Angie did all the time. I want them to smile, if only for a moment.

You want to know why I let the "Junior Doctors" beat my body to smithereens when I go in-patient or have tests/procedures done? It's because I never want another kid, whether it's a 1 year old or a 17 year old, to go through what Angie went through. Granted, things have improved by leaps and bounds in the past twenty years, but those new doctors and nurses still have to learn on someone. I wish there was a better way to have medical professionals learn their craft other than making mistakes and accidentally hurting kids. It's not their fault, but I just hate it.


I'll leave you with this final thought: Personally, I don't love a ton of visitors when I am in the "The Joint". If I'm in there it means I'm in rough shape and things are happening to me that aren't so pleasant to anyone's five senses, and possibly the sixth one. That being said, I do appreciate the phone calls and emails. My dear sister was right, contact with the real world is a very good thing. What a pleasant and much needed surprise it was to have internet access while I was in there for my recent stint. As I said before, Angie would have loved things like blogging, Facebook, and the internet. It certainly helped me pass the time. You can read in her own words how lonely she was. I think of that every day of my life. I hope after reading this you will take a moment to make a phone call, send an email, or hop in the car and go visit the the people you care about who are cooped up in that "cold, sterile dungeon" or even someone who might be feeling lonesome at home (CF or not) . Take time to send them some love instead of mowing the lawn or doing the dishes. Those things will always be there to do. People unfortunately aren't as eternal. Only in our hearts.

Angela,

Today marks 17 years since you passed away. As I say in many of my blog posts, there isn't a day that goes by where I don't think of you and wish you were here.
I know this isn't quite a published book or a movie, but at least your dork of a brother can share your message with a few people and teach them something very important about life: It's much bigger than just their little corner of the world. I love you and I miss you with all my heart and soul.

Love,

Josh

Monday, December 6, 2010

Joshland Question: "How Are You Feeling?"

I'M ASKED THIS QUESTION EVERY DAY.

The funny thing is, the answer that I give is never good enough for everyone. What do I mean?

If I give the super positive answer like this,...

'Everything thing is good, a little bumpy right now, but a couple a drugs, a little nap, and some hot chocolate and I'll be good to go."

...then people are frustrated because they want to know more. They want to know specifics for educational, supportive, and empathetic reasons. Those are all valid reasons, but they're still not enough for me to pour my proverbial heart out. If I do that, people tend become overly concerned. I appreciate it, don't get me wrong, but my health is something I tend to deal with privately rather than publicly....particularly in the bloggy world of Welcome to Joshland. I'll give you little tidbits or I'll write about things after the fact, (case in point, my hemoptysis episode from last spring/summer), but more often than not I don't want to talk about the most intricate facets of my health online.

THEN AGAIN...

If I give a honest, somewhat negative sounding answer like...

"I'm okay, I'm plugged up here, here, and here (as I point to my chest). It hurts like hell to breathe today. My belly is doing loop-a-tee loops thanks to the antibiotics I'm on and I'm really tired of the grind. Otherwise I'm peachy keen, jelly bean."

..., then I've had some of my closest friends and family say (in a partially joking/partially serious way):

"Josh...when I ask you that question can you do me a favor? Just tell me you're doing well, that everything is great, and I don't have to worry about you."

My response (in a partially joking/partially serious way): "So you want me to bullshit you? Listen...If you ask me a question like that, then I'm going to give you an honest answer because that's the kind of answer I'd want to hear from you. I don't think my answer was an "Oh-poor-me" answer, but it certainly wasn't all "candy canes and puppy dogs" either."

It's not my job to protect you from the truth. My life is my life. I'm not looking for sympathy. There are plenty of other people in the world and probably in your own lives that are going down that path with you. I'm not one of them. If I'm that blunt in my reply, then there must be a good reason for it. If I ask you for help, then it must be at a time when I need it the most. If I say "I can't do this today", it's the truth 99% of the time. I can't afford to be as nonchalant about my health as I was when I was younger. I ain't dying, but I'm much more conscious of how precious life and time is, especially after being as engrossed into the lives the CF Community as I am now. There is so much positivity and happiness combined with so much pain and death at all ages out there. It's a big reason why I don't waste my time on bullshit anymore.

It reminds me of the song "Garden Party" by Ricky Nelson. One of my favorite songs of all time, the chorus rings so true:

"But it's all right now, I've learned my lesson well. You see, you can't please everyone, so you've got to please yourself..."



(Click here to read the true Wikipedia-Story of the song "Garden Party")

Lately, when people ask me how I am, I reply with this little gem:

"I'm livin' the dream, kid. Livin' the dream."

It's a dream that's filled with smiles, hugs, hope, optimism, love, laughter, and peace. It's also filled with mucus, antibiotics, frustration, pain, guilt, and sadness. I think the best stories have a little bit of everything in them.

Now that I've gotten that off my chest, how do I feel about it?

I'm living the dream, readers. Livin' the dream. :-)

Peaceful Things,

Josh

Wednesday, December 1, 2010

'Moganko Episodes' Update & Green Screen Teaser

Since I don't have my "Angie Story" ready yet (sorry Sis), I've decided to post a "Moganko Update" a little earlier than I planned...

I've been getting my "ducks in a row", so to speak, regarding improvements in my Moganko projects. I have a handful of episodes left before I put my overly ambitious plan in to effect! What is that plan, you ask?

THAT IS NONE OF YOUR BUSINESS YET, YOU BUNCH OF SNOOPY MCSNOOPERTONS!

Joshland Note: Snoopy McSnoopertons? Man, I am a nerd. It's really so sad, but true.

All I can tell you is that the plan has to do with promoting CF Awareness on a large scale and that will only happen if I have your full support! Trust me...I dream big. :-)

FYI - I know these things aren't cinematic masterpieces, but keep a few things in mind:

1. I'm doing 95% of these episodes on my own. I do all the writing, filming (occasionally I'll have help from my awesome friends and family, which I appreciate. You know who you are. :-), lighting, editing, and post-production myself. There is a reason professional movies take months and sometimes years to make. It takes FOREVER to do all this stuff! I appreciate the effort of the behind-the-camera crew so much more now as a very novice amateur "filmmaker".

2. I'm waiting on other participants, whose VERY GENEROUS and VOLUNTARY contributions are the things that will make Moganko and my plan a success. That means patience is key. It's also a virtue that, thanks to CF, I think I have a lot of in certain situations.

3. I am doing this on literally no budget. I cut corners when I can. I have a low grade camera. I use green sheets, a shower curtain, home rated work lights, and pvc pipe to make "movie magic". I hope the effort shines through on this cut 'n' paste production.

4. My health ALWAYS comes first, which means it gets in the way of "Moganko Time". I'm as annoyed with it as you are, but all of these projects WILL get done.

I'm sure there are people who think I am a fool and I'm wasting my time doing these things. I've got news for them: I do it because I do enjoy it and want little kids with CF to have something to smile about. If nothing ever happens with my grand scheme, it won't matter one damn bit to me because I get emails and notes all the time from adults about how my videos helped their kids feel good about taking care of themselves while laughing in the process. That makes all the effort worthwhile. :-)

Here is the teaser update video (which is actually longer and more intricate than any of the previous episodes have been if that tells you anything.) I hope you enjoy this and will share it with your friends and family. :-)



Don't forget to grab my YouTube button here to post on your blog. It's a direct link to my YouTube Channel:

"W2J on YouTube" Blog Buttons

Peaceful and Big Dream Things,

Josh & Moganko

What'd You Think?

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Peaceful Things ~ Josh
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