Joey, Just Joey

Joey, Just Joey

In the beginning… — August 19, 2015

In the beginning…

hand surgery

As we were driving home from the hospital yesterday, we were recalling stories of our many, many hospital experiences. I would be remiss, if I did not tell you the story of my carpal tunnel surgery.

When I first started having problems with my hands, the hand specialist diagnosed me with carpal tunnel syndrome in both hands. We scheduled surgeries separately so that I would not be without both hands at the same time. As a single mother of two young boys (at the time) being without one hand would still leave me short the other 27 hands I needed daily. My mom was nice enough to take the day off and bring me to my surgery. That’s where the fun began!

We parked at the outpatient surgery center of the hospital, and started to walk in to the building. As we neared the doors, my mom made a shrill sound that I’d never heard her make before and told me how nervous she was for the surgery. Hold on! Wait! Aren’t you here to calm MY nerves? But yet I found myself consoling her. It’s kind of funny when I look back on it.

I was taken back quickly in to operating room and the surgery was reported to be a success. Who would have known at that point that my problem was not carpal tunnel but un-diagnosed Raynaud’s syndrome. How pissed was I after the surgery when my hand continued to still go numb. But we still didn’t know at that point that it wasn’t carpal tunnel. So I had the other hand done too. So stupid! Back to the original surgery day. I sit in recovery for the required time and then I’m discharged into my mom’s “capable” hands. Please keep in mind that I love my mom to pieces. She wheeled me out into the lobby area in a wheelchair and went outside to pull up the car for my convenience. You will never guess in 1 million years would happen next! My mom had brought the car to the curb left the car running so that I would be comfortable… And locked the keys in the car. All I wanted to do was go home and sleep and hope that the pain meds would not wear off too quickly. But as you know, in the Joey world, things don’t always turn out as planned.

Now at the time, I was still renting an apartment. My spare keys were neatly tucked away in the kitchen of that apartment. No one had a spare key. Being the dork that I am and that desperate times DO call for desperate measures, I called my landlord and asked him to retrieve my extra set of car keys and bring them to the hospital. What a guy! He actually did it! Much more to tell about him but that’s for another blog on another day. Just remind me to tell you about George.

Thanks to George we are now in the car on our way to my apartment. I only lived 10 minutes away from the hospital so the ride was not to bad and my hand was still numb. As I start up the stairs to my front door, all I could think about was making a very quick sandwich since I hadn’t been able to eat, and go to sleep. But, mom had another plan. Not really sure it was a plan per se, but I wasn’t going to go to sleep anytime soon. While my mom was walking up the stairs behind me, she tripped on the stair and slid across my wooden deck as if she was sliding into home plate. But, she was not SAFE! She had in fact gotten the biggest splinter I had ever seen in my life to this day. I’m telling you the woman had a 2 x 4 in the palm of her hand. After letting out yet another shrill cry, she brushed herself off and went inside. Now I know this story makes me sound like an ass, but remember I was still partially sedated and not completely aware. I made myself a sandwich and went to bed. I woke up to my cell phone ringing and it was my ex-husband. He was supposed to have the kids that night because of my surgery and wanted to know where the boys were. I called out for my mom, Tyler, Jake and no one answered. I stumbled out of bed and searched around the apartment completely empty. I told my ex I would call him back and called my mom’s cell. I immediately asked her where she was and where my kids were. She told me not to worry the kids were with her and were fine. But mom where you? Oh she tells me, I’m in the emergency room getting my splinter/plank removed from my hand. I should be home soon. GREAT! You can’t make this shit up! This is my life.

So now were in a “who’s helping who” situation. Both of us with our left hands bandaged and in pain. Now I’m starting to think that at the beginning of the day when she made the odd shrill sound and was nervous…maybe this was why.

It wasn’t for at least a year later that I was diagnosed with Raynaud’s. And I think at that point, I had my first digital ulcer. Digital ulcers can be very small or rather large and will put the poor soul that ends up with them through months (even years) of hell, in the worst pain imaginable. I have had so many I can’t even keep track anymore. I take many medications to thin my blood and dilate my vessels in hopes of increasing circulation to my finger tips. I’m sure it helps but it’s not foolproof. I usually end up being admitted for about seven days of which 72 hours of it is spent on an infusion drug called Flolan. It is administered in the cardiac ICU because it drops the heart rate so dangerously low the patient must be monitored 24 hours a day. Some treatments go better than others. Some still haunt me. I’ll tell you about those when I finish my therapy for my post traumatic stress disorder. I don’t really have PTSD, or maybe I do, it was pretty bad.

So what is the moral of this blog? Never trust a first diagnosis without a second opinion before having surgery. And maybe my great-grandmother from Italy had something when she used to safety pin her keys to the inside of her bra. I bet she never locked herself out of her house or car! And lastly, if you need a ride to the hospital, you may want to exhaust other possibilities before calling my mom.

Love you mom!

By the way, if this is a super long blog… blame Doogy the dragon! It’s just too damn easy! I love my Dragon software!

Woohoo! My life is a blog!

Infused with Love ❤️ — August 18, 2015

Infused with Love ❤️

Blogging from the beautiful City of Brotherly Love’s Hospital of the University of Pennsylvania.

The drive down this morning was a bit like a slow moving parking lot until Tim decided to change our route. Thank God or I fear we would still be sitting there! I’m so glad he knows directions. Me? The most directionally challenged person to ever live. I get lost leaving my driveway.

No Pastor Sue to report this trip. Just a whole lot of slow driving, beep happy drivers. What’s the beeping going to do for you?

Got to the infusion center and my meds were all ready for me. Since the meds have to be “made fresh” for each treatment there is sometimes a wait just for the meds to come. Not today! I got the pre meds, including my sleep inducing fave- Benadryl. But before that could happen, the nurse played pin the needle on the Joey with my left arm. Because I get so many injections, IVs and Infusions…I have a lot of scar tissue and it makes me a “hard stick”. I see a central port in my future. But for today, had to switch arms and finally…she was in…success! About 10 minutes after the Benadryl injection, I’m out cold. Dreaming of smoothies and frozen yogurt. I told you I’m a fat kid at heart. Tim says the last thing I said to him was Google Carlo’s bakery in center city. Fat kid! Yup! That’s me!

This infusion only took 5 hours. Not too bad. The infusion pump gods were not looking out for me today. Started the day with beeping cars…now a beeping pump. It is the most annoying and loud alarm going off over and over in an almost “I hit the snooze button” pattern. I woke up each time but fell quickly back to sleep each time. All in all, not bad. Just super tired still and see a Netflix night ahead and maybe a smoothie. Mmmm!

After the infusion wrapped up we had to go to another building across the street for my chest CT follow up from my June aspiration of vomit. ICK! So foul! Aspiration is not a fun game. I don’t recommend it!

We are heading back home now. Recalling all of our past hospital experiences- inpatient and out. So many that it is hard to keep track now. What a crazy ride it’s been! One that I hope I can keep riding for a long time!

This is my current situation…brake lights.

Starting to move now so think I will grab some shut eye. Oh wait! I’m driving!

Just kidding, silly!

Oh! And if your wondering if we went to Carlo’s Bakery…you should know me by now…right?

Of course we did!

We bought so much they gave us a souvenir bag. I think I can get this cannoli into my tube. Or at least out of my G tube when/if it’s a total fail.

And through each and every day, all I can think is I love my life! I wouldn’t change a thing! I AM BLESSED! 

Hope you all had a great Monday!

Woohoo! My life is a blog!

Can you pass the potatoes? lol — August 17, 2015

Can you pass the potatoes? lol

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!

As if Monday’s aren’t bad enough… — August 16, 2015

As if Monday’s aren’t bad enough…

I have chemo tomorrow. That’s right…Philly bound for the 3rd time in less than a week. 

I do love the city! Cheesesteaks…pretzels…cannoli… yea…not tubie friendly food. I have a different kind of cocktail waiting for me. It’s my second treatment in this round. 

On a glass is half full note, I get to spend the whole day sleeping. It’s kind of a bonus considering dangerous chemicals are being injected into my veins. It really is a perk!

Enjoy your Sunday! Normal (and I use that term loosely) blogs will be back tomorrow. 

Woohoo! My life is a blog! 

Straight Outta… — August 15, 2015

Straight Outta…

My mind! 

Good Saturday morning! Had a really great Friday with Jake and his friends. Started with a visit to the pain doctor in philly…thanks for another ride Jake….and ended with seeing Straight Outta Compton with Jake and 2 of his friends. Can’t wait to share the weekend shennanigans  with you! Thank for another week of keeping up with my crazy life. More to come on my next blog. 

See you on Monday! Have a great weekend!

How to train your dragon… — August 14, 2015

How to train your dragon…

dragon

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!

Hello. My Name is…Jelly. — August 13, 2015

Hello. My Name is…Jelly.

hello my name is jelly

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!

“Permit” me to share… — August 12, 2015
“Permit” me to share… —

“Permit” me to share…

permit

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!

Rainy days and Mondays… — August 11, 2015

Rainy days and Mondays…

First let me say – Happy birthday to the best Mom in the world!

Next stop…CRAZYTOWN! All aboard!

Woke up Monday morning and waited for a call from the VW dealership about my car. Since, as you know, it was towed there Saturday night. No call! So, I called them.

Asked for the service department and inquired about the status of my car. The service adviser said he knew nothing about my car. Oh…you haven’t looked at it yet, right? No no no…THEY DIDN’T HAVE IT! The adviser told me that he didn’t have my keys, paperwork or my car. Great! My car problems just went from annoying tire issues to a missing vehicle. Do I call the police? Drive around in my invisible car and look for it? Good morning, Joey, welcome to your Monday!

I called the towing company and inquired about the car. They said the paperwork says it went to the dealership so they would call the driver and see what he did with it. He was a part-time driver and who knows what he did with it. That’s very comforting. Forty five minutes later…no call from anyone. I grabbed my phone and went to my VW app to call and complain when I remembered the app has a locator option. Why didn’t the VW dealership suggest that from the start. Turned out…I held the power to find my car in my own hands! I got an address where my car was parked. I googled the address…Guess where it was? It was still at the towing company. I called them again…they said they were holding it there. Uh…why? But the good news was that my car is no longer among the missing. I will actually see my car again! Oh yeah…I will actually see my f’d up car again. Exciting and then…not so much.

After my call to VW corporate, my case has now been opened, escalated and is being reviewed. It better be a quick review. I have to be in Philly tomorrow for wound care for my tube site. Did I tell you about that? Last week, I went to the hospital to have my stoma (tube site) looked at. It had developed granulation tissue which is very painful. The tissue was very small but hurt like a bitch. The physician’s assistant used silver nitrate to “burn” the tissue off. The next day, the whole site was burning and raw. Turns out, she treated the granulation tissue plus the intact skin around it so that the whole site was now raw. Ow! I have a pretty high pain threshold and this left me breathless and cursing. I called the PA and she said “Oh sorry I tried to wipe it off but must not have gotten it all” and then giggled. There is nothing funny about this lady. I giggled in a “I’m going to hurt you kind of way” and hung up. Now, wound care is in order. Funny thing, I just need a car to get there.

When it rains it pours!

Woohoo! My life is a blog!