Today my son, Jake, drove me to Philly for my wound care appointment. Jake has his permit and was hitting the major highways for the first time. He really is a great driver. But what an adventure!

We started out behind schedule by about 20 minutes and after the mandatory McDonald’s run (for him, not me) we were on our way but really behind the eight ball. Jake assured me he would make up time. Wait! Do I really want to encourage him to do that? I’m usually crazy (in general, but more specifically) about being at appointments early, or at least on time. Today, we would get there when we got there. I was just thankful to him for waking up early and driving me there. The laughs on the way were just an added bonus.

Jake merges onto the first highway in our journey and ends up stuck behind (and I quote) “Swervey McSwervster” who was meandering back in force in the lane. I explained to Jake that was what texting and driving looks like and we went around him. Imagine Jake’s surprise when we passed our friend Swervey and he was in fact…texting. Hmmm…maybe mom does know something.

Oh wait! Did I tell you that I am in a rental car? That’s right! My car is still at the dealership. The service department called me late yesterday to happily tell me that there is nothing wrong with my car and I could pick it up. ARE YOU FREAKING KIDDING ME? Needless to say, I “politely” told them they could rethink that answer and keep the car until they find the problem. They provided me with a free loaner and the saga continues. I told you I complained to corporate. The representative from VW corporate called me this afternoon. He also assured me that nothing was wrong with my car. After I blasted him. He added that the service department would have liked to have kept my car overnight to road test it, but since I had to take it home, they couldn’t. Again…are you freaking kidding me? My car is at the dealership…hasn’t been home since it was towed from here on Saturday night. This is getting scary. They don’t know it is there and they don’t know I have their car? They are going to test drive it and get back to me tomorrow. More to come on this subject.

Back to this morning. Our next encounter on the road was Pastor Sue. We know this because her license plate said – PSTRSUE. The good pastor liked to drive really slow in the passing lane. We followed her for far too many miles before we could finally get around her. We laughed about her for a bit. We finally make it to the hospital, and only 6 minutes late. We drive into the parking garage to find a spot as I remember I don’t have my car with the handicap plate so who knows where we will end up parking. But look! Up ahead, a car is pulling out of a spot close to the elevators, perfect! Jake says “Look it’s Pastor Sue!” I laugh as I think he is joking. The car pulls out and damn if it wasn’t good ole’ Suzy! We are laughing hysterically as we pull into the spot and look up at the sign that reads permit parking only. She got us again! How in the hell did she get there before us? We find another parking spot and head for the elevators. And who do we finally come face to face with? If you guessed Pastor Sue you are correct. How awkward! Did she know it was us riding her tail down the road? What are the chances that we were heading to the same destination and end up in the same damn elevator. Just a reminder – be nice to everyone on the road. You never know if you will end up sharing an elevator with them.

Now onto the wound care appointment. It went great! I loved the nurse that helped me and he was able to offer some really good care advice for my stoma. The whole appointment was only 15 minutes. Jake couldn’t believe we had to drive an hour for a 15 minute appointment. Welcome to my world, Son!

Luckily, the drive home was uneventful and full of laughs and great conversation. Have I told you that I love being a mom?

Woohoo! My life is a blog!

I woke up this morning in anticipation of my exciting day. We are going to a very special birthday party this morning for one of our sweet little flower girls…completely Adorbs! Then, mom’s birthday dinner. But before all that can happen….

I spent 25 minutes this morning coughing and clearing my throat. One of the many “benefits” of having pulmonary fibrosis. I’m sure my family gets sick of hearing it. They have to! I personally want to punch myself in the throat with total annoyance of the repetitive sound! It eventually subsides so I can get on with my day.

Last night the whole family was home. Tyler and his sweet girlfriend, Kelsey, and Jake and one of their lifelong friends, Nate. They planned to see a movie. Like a good mom, I bought them the tickets and let them take my car. About 10 minutes after they left, Kelsey called. They had a flat. If you remember I alluded to my vacation tire issues…well apparently the problems are continuing. So…here’s the complete tire story.

We had just arrived in Ocean City, NJ, very excited to start our annual family shore trip. While unpacking and setting up my IV pole and feeding pump, I realized I had packed everything, but the pump’s power cord. How stupid could I be?! Tim and I went to the local drug store and searched for a cord that would work. We hid in aisles and carefully unpacked any razor/water pic/cordless phone/radio we could find to try to match up the cord. Of course, if we found the right one, we would also be the proud owners of whatever it was supposed to go with. But, no luck. We left the store, pump in hand, cordless and sad. This was on a Saturday so overnighting from home wouldn’t have gotten the cord to us til Tuesday…just not an option. My wonderful husband offered to get up early the next morning, drive home, retrieve the cord and come back. Isn’t he awesome? He said he could be back before the kids even woke up. 7:30 am on Sunday he started his recon mission. He made it home in record time and started his return trip to the shore. Twenty minutes into his trip, he got a flat. He called me from the side of the road. Ergh! Of all things to happen! He got the spare on the car and drove to the only tire store open on Sunday morning. Of course the tire was shot and needed to be replaced. But as an added bonus, my alloy wheel was also cracked. They didn’t carry the wheel so told him that he should be fine on the cracked rim with the new tire and to just check the air pressure daily. He drove off with the new wheel ready to smell the ocean air. Until 2 miles later when he had another flat! Wtf?! This time, spare went back on and I told him to just drive back to the shore on the spare and we would find a VW dealer there. Thank God! He made it back on the spare. I started my search for local VW dealers. I was thrilled there were two that were somewhat local. I called Monday morning and ordered my new rim. How much did you say that was? $389? OMG! Had no other choice so I ordered it. It came in the next morning  and they were going to put on the last new tire and we would be on our way. Easy enough, right? Ha! Do you not know my life yet? Things are NEVER that easy! They took the car in, the newest of my tires was shot! It’s short 2 mile life lived in vain. So, another new tire on my baby. Ok…all is good now. Or is it? Next day, didn’t really drive much. The following day we were headed to Wildwood for dinner and the boardwalk. It’s something we do every year and we always enjoy it. Well, 10 minutes into our journey you will never guess what happened! Ding ding ding! Winner!!!! This time…it was a complete blowout. Just have to show you this:

 Really? This is freaking insane! Back to to VW dealership. They claimed the tire was defective so they replaced it and assured us the car was structurally sound and sent us on our way.

It’s been almost a week since we drove the VW home from our vacation. Fast forward to last night’s tire debacle. At midnight, I watched my car get towed away to the VW dealership, only 9k miles, where it will live until they figure it out or give me a new one.

All in all, a very exciting weekend. Now onto the birthday party! Happy birthday sweet C!

Woohoo! My life is a blog!

Thought I wouldn’t blog today but…here I am! Woke up oddly early this morning . It’s no wonder. I feed at night. God that sounds like I’m a vampire. But in layman’s terms: I am hooked up to my feeding pump all night. You have to really pee to cart that heavy lug of an IV pole down the hall and back. I had to but…just couldn’t drag myself out of bed. I guess you could say the bladder was willing but the Tubie was weak.

Have I told you I have 2 dogs? Miniature poodles. Adorable! They are from the same litter although, one is much larger than the other. Nibbles is the bigger girl, Chocolate is the tiny one. Don’t judge the names. My sons named them when they were young kids. The dogs don’t help the sleep situation in our house. Tim and I have a full size bed. It’s fine for the two of us but much to Tim’s dismay, it is NEVER just the two of us. I always have to have the dogs in bed with us. It didn’t start out that way. They used to sleep in the crate at night. Until I came home from one of my many hospitalizations and explained to my hubby that it would me feel better faster to have the pups in bed. Nibbles and Chocolate have never spent another night in the crate. Where was I going with this? Oh! Yes. They take up a lot of the bed. They have nightmares and kick their feet. They are scared to death of storms. And they are very skilled at letting us know they have to go out. Not subtle at all…they sit on Tim’s chest and lick his face until he gets up. Works like a charm so I don’t suppose it will change.

Anyway, we went to Longwood Gardens this morning. It is a beautiful place to walk and enjoy the beautiful flowers and plants. During the winter, the conservatory area is warm and toasty and smells like a bouquet. We were (un)lucky enough to be there during an outdoor childrens rock concert. We, of course, didn’t attend but the music (term used loosely) filled the morning air. We had to sneak in and check out what individuals could be emitting these screeching sounds. Expecting to see people in costumes or band made up of girls…they are all Middle Aged men. How in the hell did their voices go so high? We entertained ideas of what could make that happen…all possibilities made us laugh. Best part was when they broke into ACDC’s Back in Black! What the f? But the kids were going wild. Go figure!

Side note, as we were sitting on a bench talking like an old senior couple, I remembered on old toy. Tim never heard of it. It was a “wiggly” worm kind of you that you could never grab. It would always slip out of your hands. Not sure what made me think of that. Did you ever have one? I think I might go on Amazon and order one. Will keep you posted on that.

Came home after that. Honestly, too exhausted to do anything else. When we walked in the door, my mom was grooming the dogs. Now that is a freaking shit show! Poodle hair everywhere! I just wanted to rest but had to jump in and assist in the sheering of the sheep. Should have taken a picture of all of the hair. Could have made two more dogs out of it.

Oh yea…here are a few pics from our morning.

Me & Nibbles

My Mom’s bday cake, beautiful huh?

Just thought I’d share with you…kind of a selfie Saturday. Enjoy your weekend!

Woohoo! My life is a blog!

I wake up in an insane about of pain after sleeping in 87 different positions trying to find relief from pain all night. But the key words were – I wake up! Always a good start to the day.

You know when you wake up in the morning and you really have to go to the bathroom? You are practically walking with your knees together. Yes. That was me this morning. But add to that…THE POLE! No more getting anywhere quickly for me. Not like I was sprinting anywhere anyway but add the IV pole to the mix and it is a circus act. I wish (or not) that someone could video this process. My original pole generously provided to me by my insurance company was so large that I couldn’t fit it down the hallway. Seriously! I live in a 115 year old house, very narrow hallways. So I would have to pick up and walk my pole around like a dog. A big awkward dog with tubes all over.  My incredible mom (Cathy) bought me a very compact based really sturdy pole. Thank God for her! Sadly, it won’t roll down the hall because of the carpet so now I am walking a slimmer dog that has packed on some major pounds. But, I make it there and all is good.

Next, tube care. Tubie life is a much different life and all of the maintenance and care steps are critical. SO you have to flush your tubes. This just simply means flushing water through the tubes via a large syringe to keep the tubes free from clogging. Sounds easy enough right? I thought so too…in the beginning. Until my tubes overflowed on me about eight thousand times. Now, I have the trick. No one tells you the trick. You have to learn on your own. Because I love you all, I will share. Hopefully you never need it. You must hold your breathe and not talk during the whole time your tube is open. You can bet your bottom dollar that this is when someone will ask you a question, your phone will ring, you will cough or worse yet, sneeze. What a shit show that is!

Now on to medications. I lay out my meds on the counter. To the passerby-er, it may appear I am setting up to play a good ole game of mancala. Nope! Just taking my morning meds. Since the addition of my tube, I have the option to grind my pills, mix with water and syringe them into my tube. As much fun as that sounds, I chose to still swallow them. After all, I can’t eat. At least it is something going into my stomach. I am a fat girl at heart!

Are you still with me? Bathroom – check! Tube care – check! Meds – check! Next – shower. I am lucky enough to have had some modifications done to my house to make life easier for me. My favorite of these is my built in shower seat. Makes me life so much easier. Because of my depleted energy level, I still have to decide between showering and washing my hair or showering and shaving. Sadly for Tim (my hubby), my hair always smells wonderful and my legs look like Sasquatch.

Time to make my way down the stairs. Without a doubt, my mom will be at the bottom of the stairs to greet me with the biggest smile and a hug. I love my mom! This is not just an occasional occurrence – this is EVERY morning! And I wouldn’t have it any other way.

With all of that done, I make my way to the sofa to start my day aka take a nap. zzzzz!

Woohoo! My life is a blog!