Monday, April 25, 2011

Things I've Learned Since My Last Birthday & Things I Need To Work On

Hey Everyone - Between hospital stays and life in general, it's been chaos in Joshland the past few weeks..hence the lack of blog posts. I'll get back on track soon enough...and hopefully I'll be in a more cheerful mood. I've looked back at my last few months of blogging and I've noticed a lot of "bummer" posts in there. While those feelings are healthy, it's time to take my own advice and move forward in my life. Here are some of the things I learned this year and things that I need to work on in the next year of my life:

• You will succeed at somethings and fail at others. This is life in it's truest form. The only definite in life is: YOU CAN ALWAYS TRY YOUR BEST, NO MATTER WHAT YOU ARE ATTEMPTING. If you don't try, then you're letting yourself down. If you try, at least you'll never wonder "What if?" years later.

• People in your life will disappoint you at one time or another, but it's important to give them second chances. If you do decide to give them at least one more chance at redemption (which I highly recommend that you do), and they disappoint you again, you have to stop letting them break your heart. Do yourself a favor: Keep the people who fill your heart with joy closest to you. As for the others, don't wish misery on them, but keep them on the outside where they can never break your heart again.

• I need to stop letting people get under my skin so easily. I get so pissed off about what other people say and do that I waste precious time and energy worrying about it. Life is too short to worry about stupid people...unless they are hurting others with their words or actions.

• Before you judge someone, get the facts. People are too quick to cast judgment on people they do not know...I include myself in that statement. Ignorance works both ways.

• I need to spend more time in the real world and less time on the internet.

I miss my real life friends. It's amazing who we lose track of when our lives get away from us.

• Be who you really are all the time. Even if you are an asshole, at least you're being your "asshole self". I may not like it, in fact, I may despise it, but at least I'll know who I'm dealing with. I loathe fake people. LOATHE THEM.

• I need to be confident in my decisions instead of second-guessing everything. I need to be more of a planner. I need to be the leader that I know I can be.

• I don't have a ton of guy friends and I can't relate to a lot of the ones I do have. Some of the stuff they talk about is beyond me. Sometimes I feel stupid around them. Maybe I'm too sensitive? I don't know why I feel that way, but I do and sometimes it bugs me.

• I really miss network TV Saturday Morning Cartoons. The good ones (scream it loud, children of the 80's!)

• I really hate when people bitch about how old they are. Shut up! You made it to this age! Not everyone is that lucky! Sit down and have your damn cake, open your presents, and appreciate that fact that people love you enough to celebrate the day you came into this world. I've been to a few 60th birthday parties over the past few years. Wow...60 years! They make it look so easy to get there, but I'm sure it wasn't. I'm certain it had just as much sacrifice as it did happiness.

Of course, I am a hypocrite. I didn't want a 30th birthday party. I didn't want the fuss and such over my birthday because I used to look at birthdays as a countdown to death. "Not much time left for me, so I'd better not rub it in fate's face by having a party." Even though I had a great 30th birthday, I think some people were disappointed in my choice to not have the big bash. I'm sorry guys and gals. I promise you for my 40th birthday party, I'll let you spoil the shit out of me. I'll even let you mock and ridicule me with age-themed and not-for-public-viewing gifts. Start the countdown!

• I was fortunate enough to recognize a special point in a friendship this year. I knew this friend loved me like a sibling when she brought me her food from the head table because she knew my portion would not be enough to feed my appetite. She may not have seen her gesture this way, but I did and I love her for it with all my heart.

• I hate the "CF 3 Foot rule", but I will never break it on purpose. I saw what happened to Angie and I don't ever want to chance giving someone else my bugs. There is a reason it's an accepted practice in the community. That was never more apparent to me than in this last year of my life.

• I'm running out of stories. Let me rephrase that...I'm running out of stories to share publicly. I've written a lot of stories. A LOT. The thing is, I'm not sure if they are things I want to post on the internet. Considering how I've bared my soul and pulled no punches on this blog, I think that's saying something if I don't want to post them.

• I hope, wish, and BELIEVE this "Moganko CF Project" will work if I have everyone behind me. When it's time...I NEED ALL OF YOUR HELP. That's what I want from you for my birthday: YOUR SUPPORT!

Thank you for all of my birthday wishes the past few days and I'm sure (well, pretty sure at least) that there will be more to come throughout the day. :-)I love you all very much.

Peaceful Birthday Things,


Monday, April 11, 2011

That's Life...

On Tuesday afternoon I laid tensely on the bed in the vascular access procedure room. It didn't help that the doctor placing my PICC line IV had to ask for a second opinion more than once. She gently pierced my skin with a shot of lidocaine that numbed the injection site. I wished the lidocaine would have traveled up to the limbic system of my brain because I was a emotional basket case and could have used a break in my day.

The walls that were closing in on me from nervousness and the mild sedative they used to open up my veins, so I tried to find one object to focus on. I chose a picture of dogs stacked in a pyramid with a cat in a tutu on the top. Underneath the picture it said:

"Never let them see you sweat."

Now I was annoyed on top of being nervous. First of all, don't dress your animals. Don't photographers realize how traumatized a cat is when you stuff it into a tutu? And don't give me that crap about Photoshop because I've seen the costumes at the department stores. I know what people do in their spare time. Secondly, these are cats and dogs. They generally sweat by panting which means their tongues are hanging out for the world to see. It would be impossible for them to hide their sweat. I mean, come on! My cairn terrier has a conniption fit when we turn the water on in the bathroom because he thinks he MIGHT be getting a bath. Finally, I noticed this picture was the only form of non-medical decor on their walls. I can only speculate what they say to the kids getting PICC lines:

"Now you just focus right on the kitty in the tutu and never mind those huge, scary machines and the smell of rubbing alcohol coming from your arm. Focus on the kitty in the tutu."

FOCUS ON THE KITTY IN THE TUTU?!?!?! Sweet Lord in heaven! I was about to go on a sedative-induced rant when I felt a sharp pain inside my arm and heard the vascular doctor say:

"Oh shoot, you're veins are constricting."

In my head I said "NO SHIT, SHERLOCK.", but out loud I groaned "Is ThErE AnYtHiiiiiNg I cAn Do To ReLaX tHeM?!" She calmly said to take deep breaths in an out while she maneuvered the tubing round. "Really?! Just gonna dig away in my vein, lady? Don't mind the grimace on my face. While you are at it, grab some rusty pliers and start yanking out hairs from my nether regions." I thought to myself. I tried to tell her that aloud, but I was kinda loopy from the sedative and I was in a lot of pain, so the sounds that came out were more like grunting than actual English.

Alas, the vein collapsed and she was forced to start over. Round two was uneventful except for the fact that the line was placed near my elbow, so now every time I bend my arm there is this nagging pain. Stupid doctor. Stupid veins. Stupid cat.


Such is life in the hospital. Carly and I had a feeling this was coming, though it was certainly not from lack of effort. I did everything I could to avoid the hospital from the moment I got sick this fall. I took extra meds, did extra therapies, I was active. You can read a little about it here:

Getting Things Out Of My Chest

In my mind I felt like we hadn't worn out all the options like we usually do, but I knew my body was exhausted. Between having night blindness from my vitamin A deficiency like I had in 2009 and moving slower than rush hour traffic from shortness of breath, I was like a fighter in the final round. Grasping at the ropes, refusing to go down, but strictly on the defensive, it was time for a counter punch. I decided to call the clinic.

Joshland Note: I know "the fighter analogy" is a little tired and annoying to some, but it suits my mood and I couldn't think of a clever metaphor that involved fluffy bunny rabbits...I tried, believe me.

I got a call back from the clinic later and I wasn't pleased with what I heard. "The oral antibiotics are helping you maintain your current pulmonary levels, but you aren't getting back to where we all know you can be. Many of your vitamin levels are undetectable." they said, and continued on—with a little hesitation in their voice— saying: "It might be time to consider going on I.V. therapy for a while."

When those words floated into my ear my whole body tensed up. I hate the hospital. It's always been a last resort. It triggers feelings of anger and frustration. Words like "consider" automatically make me think of the words "tune up". Back when my sister was on this earth, a "tune up" could me anything from a few weeks to a few months in the hospital. One time, my pint-sized older sister slugged her doctor as hard as she could in the shoulder when he suggested she go inpatient. It was easy for him to say because he wasn't the one who had to do it. The doc got to go home at night and see his family. He got to disconnect from all this CF stuff. I know a lot of doctors who take their work home with them, but it's still not the same. It wasn't back then and it isn't now as I sit in Angela's shoes.

It was a short stay in the hospital, but they are never short enough. Between minimal sleep, constant traffic in and out of my room and daily discussions about my health care plan, I was slowly going insane. Thankfully, I'm back at home, a bruised PICC line IV in one arm and a puppy in the other. It's by far the easiest I.V. schedule I've ever had, but that doesn't mean that it's ACTUALLY easy. It's still lots of prep work for a 10 push I.V. 3 times a day and a neon green multivitamin gravity drip. I'm coughing up a rainbow of goo, which means the meds are working, but it's gonna get worse before it gets better. My wife has taken on the brunt of the chores right now because I don't have the energy to do it, not too mention being my voluntary nurse. When I asked her why she loves me so much and how she deals with all this B.S. she said: "You are the nicest person I know and I love you so much. You are worth the extra work." That is love.

That's why I'm not complaining. You see, for every PICC IV I've had, I can damn sure guarantee that a lot of my CF readers—some of which are half my age— have had 10 times that many. I'll be done with my I.V.s in a few weeks while many of my kindred spirits will be on them for MONTHS with no breaks. It's a pain the ass and I know how mentally tough you have to be to get through it. I have so much respect and admiration for them.

That being said, I'm not going to pretend that this isn't hard for me. Things are changing in my life—MY CF journey—and I am learning to adapt. Am I getting worse? Is the phrase "tune up" or a slightly less offensive euphemism going to be part of my day-to-day jargon? The truth is...I have no clue. I'll find out soon enough, so I'm not going to worry about it. I've got more important things to focus getting better.

Peaceful Things,


Friday, April 8, 2011

Racing in the "I.V. Pole 500"

I had to go into the hospital and start I.Vs this week (more on that in a later blog post), but I made sure it was "Moganko productive" for all my CF kiddos. :-)

Ladies and Gentleman! Start your engines!

Peaceful Things,


Sunday, April 3, 2011

Moganko CF Project Teaser

I'm not giving too much away, but hopefully this will get you excited for the eventual launch date yet to be determined. I couldn't do this without you, CF Community!

Peaceful Things,


What'd You Think?

One of my favorite things about my blog are the comments I receive on my posts. I am so thankful that you take the time to write them. I may not respond personally to everyone, but make no mistake...I read every single one.

If you'd like to leave a comment, but don't have an account that's listed in the drop down menu, choose the "Name/Url Anonymous" options. Then write your comment, fill in the word verification and click "Post Comment". I will receive an email and post your comment once I've approved it. :-)

Peaceful Things ~ Josh
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