Sometimes as a tubie, the spirit is willing but…that Sunday dinner looks amazing!

I get a little over confident sometimes and will try to eat something like a normal person. You know, in the mouth, chew and swallow. Easy enough, right? Not for a tubie! The doctors encourage me to eat soft food when/if I can handle it. 9.99% of the ten times, the result is the same. Face in the toilet bowl, followed by a gastric relief drain bag. I have 2 tubes. The G (gastric) tube is for draining anything I need to from my stomach. The J (jejunal) tube goes straight to my small intestine. That is how I “eat”. The formula goes straight to my intestines. Except for when I get ballsy (or just plain stupid) and eat food through my mouth like a normal person…eat, chew, swallow…ugh…vomit. It is kind of like borrowing food. Never really getting to hang on to it. I know it’s gross! Believe me, I gross myself out!

Since I feed into my intestines, my stomach is ALWAYS empty and ALWAYS hungry. It is not a fun feeling. You would think I’d look like a model but the formula is very calorie dense. Imagine that shit?! You don’t get to eat but you can actually gain weight from formula that you are never satisfied from and never taste. By the way, it’s vanilla flavor. Uh…why? I can’t taste it. Kelsey once tasted it and said it wasn’t bad. Brave girl! I just can’t do it. I don’t know about you, but if I am going to watch my butt grow, I would like to have the memory of a delicious steak dinner and/or a great, big hot fudge sundae with whipped cream, walnuts and a cherry…maybe 2 cherries…ah hell…3!

Oh…quick car update…STILL have a rental. I’m told Tuesday is THE day I should be able to wrap up all of this car drama. We’ll see, I’m still being told my car is perfectly fine. I told them if it so fine…they shouldn’t mind if I trade it in and they put it on their lot! Fingers crossed!

So as I sit and blog, I drain, and watch the Sixth Sense. Great movie!!! “I see dead people”. It gets me every time. But as for me, I look around the room at my family and think…I see FED people. Ugh! If only.

Hope you all had a great weekend!

Woohoo! My life is a blog!

I started out my day like any other day. Twenty minutes of throat clearing, disconnect from the feeding tube, flush the tube, take meds and take a shower. Sounds quick and easy but for real…this took me an hour! Now…I am ready to blog. I am having a hard time with the typing. It takes me a while to type each blog because of the pain in my hands from the Raynaud’s. I remembered that my Mom had bought me Dragon Naturally Speaking software a while ago and I never fully downloaded the program or used it. I knew just where I had put the box which is amazing because my memory and mind are not as sharp as they used to be. My kids tease me about my “putting away” skills. I have 2 ottomans in my living room that open and can be used for storage. Whenever someone can’t find something – they joke – “check the ottomans!”. I’m embarrassed to say…they are usually right! Anyway, I grab the Dragon box and anxiously open it up and unpack the goodies from inside. All was there – headphones, connectors, paperwork…all but the download disc. This could be a problem. How can I train my dragon without the disc? Mom to the rescue. She bought me the most up to date software. Where would I be without her?

I am so excited to start using the new software so the download begins. I started the download 3 separate times and still no installed Dragon. The last time, I had a really good feeling about it actually working…and…my computer decided it was time to restart. UGH!!!!

While waiting for my laptop to finish updating, the regional rep from VW called. Oh how I dread that call! I can almost predict his exact message to me. Hello…yadda yadda yadda…your car has been road tested and no problems have been found. To which I respond, UNACCEPTABLE! Would you let your mom drive in this car after 4 flats? I think not. He is looking into it more and calling me no later than 5pm tomorrow. WHATEVER! By the time that call comes, I predict a new car will be living in my driveway sans tire drama.

Here goes! I need to start training my dragon. I have to admit, even in my own living room with only my husband and mom home, I feel like a major dork as I place my headset on. I have the overwhelming urge to ask “Would you like to supersize that?” or ” Would you like fries with that?”. I start reciting the text to help Dragon to learn my voice and tone. Embarrassed I continue reading. A message pops up that I am speaking too low. HA! Anyone that knows me knows that I do not have an inside voice or even possess the power to speak softly. My old office mates can attest to that. Or my neighbors. It helps that Tim has just sat down and laughed at the site of me saying he feels like he should make a call and I would answer with “Hello this is Jelly. How can I help you today?” Thanks honey! The same message comes up 2 more times. Turns out I had the audio cables plugged in reverse order.

I need help!

I did it! I said I need help and it typed it. YAY ME! This is going to be fun.

I think I will name my Dragon. I will call him Doogy. Tomorrow’s blog will be completely “typed” by Doogy. He’s like my new personal assistant. If only I could teach Doogy to do laundry and dishes. Oh well! Maybe he has a brother…

Woohoo! My life is a blog!

In the midst of my crazy world, today was a pretty uneventful day. Most people would enjoy that…it’s making me kind of nervous. EEK!

Car update – I am still in my rental car. Or should I say A rental car. I took the first rental car back because it felt like I was driving around in an ashtray on wheels. Ironic since there was a large “NO SMOKING” sticker on the dash. But who am I too judge? The latest on the car is that the service manager will drive it overnight and report back. Between you and me…I am not feeling it. I see a new car in this Tubie’s future.

Tyler bought a new car last weekend and his check engine came on last night. So during my car lull, we took his car to the shop to get checked out. Turns out it is something small and all is ok now. If only all car stories ended like that?

I saved today to make some phone calls I had to make. Since I was about 12 years old, people have not understood me when I tell them my name is Joey. I don’t know if they think there is no way I could have a boy’s name or if I just say my name wrong. I am honestly starting to believe I say my own freaking name wrong. I remember calling my first boyfriend’s house for the first time (we were 12…it was a phone relationship) and his mom gave him the message that “Jelly” called. What the? I know my parents were a little wacky to name me Joey but Jelly is just a golden ticket to bullying on the playground and years of therapy. As if it isn’t bad enough that my name is JOEY…but JELLY? Who the hell would name their little girl…Jelly? The Jelly name has continued to plague me through the years. In the business world, I received Fed Ex packages to Jelly. I received voice mails asking Jelly to get back to them. And more recently, VW called me Jelly yesterday on the phone. As Joey, I often receive mail to Mr. or calls asking for my husband or have nurses and doctors walk in to my hospital room, look at me and walk away confused and then come back again. I know the game so I just say, Yes – I am Joey, you have the right room. Most times I can say I have enjoyed going through life as a Joey, not so much a Jelly. Maybe I should think about speech therapy. At 43, maybe I should finally learn to pronounce my name. I think I will put that on my calendar right after my CT scan, pain management appointment and next chemo treatment.

I can say that the stress of the whole car situation seems to be taking a toll on me. Don’t know if I told you yet but stress is not a friend to Scleroderma. Stress can quickly cause a “flare up”. I feel that a flare up is on the horizon so I have decided to lay low for the next few days, rest as much as I can and try to avoid stress. That is so funny. Avoid stress. I have had doctors tell me to avoid stress. It is laughable! It’s like, oh ok, I never thought of that. I will just stay in bed and hide under the sheets. Stress won’t find me there. HA!

WTF?!

Woohoo! My life is a blog!

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!