Joey, Just Joey

Joey, Just Joey

Handicap Parking Only — August 24, 2015

Handicap Parking Only

disability

I have a handicap plate. I use handicap parking when I need to, on bad days. Otherwise, I just park wherever I can find a spot. I figure, if I am having an ok day, save that spot for someone that needs it more. This blog will go hand in hand with a future blog called “You don’t look sick”.

So, I pull into Walmart’s insane parking lot. There is not any point in the day or night that this parking lot is not a three ring circus with clowns everywhere. I just need milk and…I really am not feeling well. I park in a handicap spot close to the entrance. As I get out of my car, the elderly gentleman next to me glares at me as if to say “You aren’t handicap!” Why does this bother me so much? Why do I feel like I need to justify my medical condition to this person. I actually ordered a decal for my back window that read -” I do have a right to park here. I have Scleroderma. Never heard of it? Neither had I. Look it up.” But even then, why do I need to explain? I have often thought to myself that I should have a stock answer for when someone says something. But usually, there are no words, just an opinionated stare of disgust and disapproval.

One time while I was still working, I was riding the elevator in the parking garage to the 2nd floor to my car. A very overweight man got on the elevator with me and when I pushed the button for the 2nd floor, he told me that I should be walking up the stairs not riding the elevator. I was floored that he had the cahones to say that to me. I very curtly replied, well, I have pulmonary fibrosis so the stairs are hard on my lungs. But really I wanted to say that PLUS F*@# YOU! I have learned to have a thicker skin (excuse the pun – you know…scleroderma…thick skin) and to use humor to deflect these type of rude people but I have to admit…it still gets to me.

I thought I would blog about this to remind people that you never know what illness or struggle someone is fighting based on their looks. I look “healthy”, maybe even stunning some would say. haha! just kidding! By looking at me, you can’t see my hardening lungs, the mass in my brain, my narrowing blood vessels, the pain that radiates through my body every minute of every day, my paralyzed stomach attached to my feeding tube and many other things.

So, please, the next time you see someone park in a handicap spot, or use a scooter chair to shop, don’t pass judgement on them. You never know what they are battling. And by the grace of God, be thankful that you are not in their situation.

Wow! Today was deep! I had to go there! Sorry! But on the other hand, I am open to things I can say if confronted. I need a real zinger! Hit me up with some good ones! Thanks – I have faith in you guys!!

Woohoo! My life is a blog!

Why Tubie or not Tubie? M — August 21, 2015

Why Tubie or not Tubie? M

confused

I have been asked many times, well honestly, just once…by Jake…why my blog is called Tubie or not Tubie. He assures me that others are thinking the same thing so I thought I would explain.

To be honest, I started by trying to find a play on the word Tubie. I had several really stupid ideas that I won’t bore you or embarrass myself with. Then it hit me…Tubie or not Tubie…I mean really THAT IS THE QUESTION. In this case for me it represents a few things. First of all, it represents the struggle I went through to make the decision to have the feeding tube placed. It was a huge decision. My options were a gastric pacemaker or the GJ feeding tubes. I have a little grossed out by the idea of the tube but was told that the success rate for the gastric pacemaker for scleroderma patients was less than impressive. Seemed my decision was clear but I still went through an emotional struggle to accept the idea of my new appendage. I would show you a picture of my stomach but honestly, you don’t want to see that. Trust me! So that is the first reason.

The second reason and my hope for this blog is that whether you are a “Tubie” or not, you would be able to read this blog and enjoy it. After all, It really is just the day to day story of my crazy life and I just so happen to have a few serious chronic illnesses and a feeding tube that come into play sometimes too. I hope that it raises awareness of scleroderma and people with feeding tubes so that we don’t get as many looks when we are hooked up to the pump in public via a backpack.

Oh, have I got a story for about backpacks! Let me tell you. So, the pump keeps a charge for 24 hours so that you can “wear” it on the go and not be stuck to the IV pole. Sounds great right? On to Google. You can buy anything on the internet, right? Anything but adult feeding tube supplies. I thought I had finally found the perfect back pack made specifically for my pump style. We ordered it at the low, low price of $98! It came in and it was a teeny, tiny pediatric backpack. I would have looked like the biggest doofus ever, if I was even able to get it on my back. Needless to say, it went back. Being the determined and resourceful woman I am, I decided to make my own. I bought a cheap backpack to start, added a grommet for the tube to come out of the bag to my stomach, attached a velcro loop at the top to hold my feeding bag and a thick elastic band to secure the pump. I have to tell you…it’s pretty cute. But, one was not enough. You will soon learn that I am a bit OCD. I had to buy one for every outfit. I don’t want my back pack to clash with my outfit. I have a black one, a pink one, a green one, beige with pink polka dots, one with cupcakes, even a Vera Bradley one with a rooster print…and many more…you get the picture. Sorry for that tangent.

Lastly, I just thought it was a cute name that would be easy to remember. I hope that I was right with all of my assumptions. Because you know what they say about ASSuming…

I hope you are all enjoying my blog and I can’t tell you how much I appreciate your support, comments and views. I welcome any feedback. Unless it’s bad, than don’t tell me…I just can’t handle it. Just kidding. ALL feedback is welcome.

Now, Jake should be happy that I have explained myself. Thanks for entertaining me!

BTW, heard from the latest dealership this morning. I told you yesterday that while in route to the new shop, my air pressure indicator light came on. Well, when the service manager arrived this morning, he found a completely flat tire. He has a few ideas about what may be causing it so we are making progress. Waiting to hear more. The last dealership that couldn’t find an issue also called me this morning to make sure I was satisfied with the service.HA! FOR REAL? I shared with him that I was not at all happy and they didn’t fix anything and couldn’t find a problem. I bored him with the same broken record message that I have been repeating to anyone that will listen to me “Just because you can’t find the problem, doesn’t mean it doesn’t exist!”  It goes without saying, I will NEVER go to that dealership again for ANYTHING and after all the bitching I have done they hate me! So the feeling is mutual.

Oh well! Hugs and obscenities to them!

But so far, really impressed with my new dealer. I will release their name when all is done. More to come!

Woohoo! My life is a blog!

If life gives you a lemon… — August 20, 2015

If life gives you a lemon…

 Call an attorney! 

In honor of National Lemonade Day (who makes this shit up?), I have finally decided to contact a lemon law attorney for my car. It’s sad really because I just want my car to be fixed…or for them to give me a brand spanking new one that won’t shred my tires like confetti as I drive. Is this too much to ask? 

If they think that telling me that they haven’t found a problem and that it is ok would fly with me…they clearly don’t know how much I enjoy playing the consumer advocate for myself…and frankly whoever else would ask. I hate when people are taken advantage of… Or treated like idiots. In this case, I feel like they are treating me like a dumb woman that doesn’t know anything about cars, much less that it ISN’T just a coincidence that the same passenger rear tire keep imploding! Now come on! 

As much as I do enjoy advocating for myself, I have also taken the liberty of contacting the local news consumer advocate for help. I’m thinking between the lawyer and the consumer advocate and my incessant bitching, this just may get resolved.

However, I picked up my car from the 2nd dealership that has attempted to repair it and dropped it off to the 3rd and hopefully final dealership. Ironically, within five minutes of picking up my car to drop it off at the next dealership, the air pressure light came on. Seriously?! Yup! There definetly is a freaking problem! I have a good feeling about this new place. Am I an eternal optimist or what?!

In the meantime, as a wait for THE CALL, I am trying not to get too stressed out. Stress is an absolute enemy to all but especially those with autoimmune diseases. This stupid situation could set off a flare up that could land me back in the hospital if I not careful. So. I am trying to stay as calm as I can and even enjoyed a cold Golden Monkey last night…that helps to keep things in perspective and also…put me to bed by 9:30. I am by no means a drinker. Can’t hang with the big dogs anymore! 

But, I think for today, I will skip the beer and pour myself a tall glass of ice cold lemonade and say Cheers to VW and Happy National “Lemon”aide Day! Salute!

Woohoo! My life is a blog!

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!