Tubie or not Tubie

Tubie or not Tubie

Can you do me a SOLID? — May 31, 2016

Can you do me a SOLID?

Many of you know I have a gastroparesis. For those of you that don’t or don’t know what it is, Gastroparesis is a disease of the muscles of the stomach or the nerves controlling the muscles that causes the muscles to stop working. Therefore, when I eat or drink, I get full almost immediately and it takes me a very long time to digest my food. 

If you have read my earlier blogs, you’ll know I used to be a “tubie” or a person with a feeding tube. I had a GJ tube. That is a tube that splits into 2 tubes- one into the stomach (G) and one (J) into the small intestine. I had the tubes for about 7 months. And- it was a life saver. But, I’m not going to lie, it was really hard not being able to eat anything thorough my mouth. And it was even more difficult being attached to a feeding pump. 

Tube life is challenging for a lot of reasons- the obvious- THE TUBE -and the less obvious- the not eating. I had created backpacks for my pumps so that I could be mobile while “feeding”. If you ever want to feel like a freak show- walk around the mall with a back pack with a tube coming out that runs to your body in some way. It really gets a consistent response. People smile. They follow you around. And, if you make eye contact, they compliment you on something….anything. “I love your shirt”. “Your hair is pretty”. “I like your pocketbook”. Or the weirdest interaction I ever had and probably my favorite was around Halloween at Target. I had taken my backpack off because I was just feeling weak that day. I had it hooked to the inside of the shopping cart with the baby seat belts so I guess it was more obvious. A youngish woman followed me up one candy aisle. And then down another. We made eye contact. She smiled. And then it happened. She said she liked my shirt. (Of course you do!) And THEN offered me coupons. Uh- ok! Awkward! Ok, uh! Thanks! Yes, I would LOVE coupons!! 

Still my fave!

Downside was the granulation tissue that formed around the stoma, or the hole. Granulation tissue is raw tissue formed when the tube moves around too much and also from the acid coming out of the stomach. It can be somewhat prevented with diaper rash ointment and special tapes. But, not fool proof. I suffered with it at least one week out of each month. It would hurt so bad even just to breathe or walk. Trust me when I tell you, it was awful. 

So, I eventually got very frustrated with the process and had my tube pulled the day before Thanksgiving. I still have the condition that got me the tube in the first place so I have to deal with it still everyday. Now though, I eat solid food once a day and basically have liquids as I can tolerate. 

The point of this blog? Oh yea! I had to go for testing. A Gastric Emptying Study- a GES. I have always had this done at my normal big hospital. With my new insurance I had to go to my local small town hospital. No big deal I thought. This test is a nuclear medicine study. Usually, I am given water with some radioactive matter in it and I drink it and they watch how long it takes to travel and empty. And then, I am given a sctambled egg and toast sandwich with special radioactive matter (talk about your special sauce) to eat and then same thing. (Side note- scary thing when someone brings out a heavy metal tube with a syringe inside of it that they handle with thick gloves to insert the “matter” into your food for you to ingest. Lol! Don’t worry! It’s safe!) They watch it trave for about 3 hours. This determines the delay in digestion of SOLID food. See what I did just there? Can you do me a SOLID? Lol! I do crack myself up! But, my little local hospital, yea…they gave me oatmeal. Not what I would consider a solid food. This test showed my digestion had sped up- not normal still. And I know for a fact, it has not. Oatmeal? Really? That is a soft diet food!! Even my GI specialist was like- uh, we need to redo that here. 

That was a whole lot of info to get to that wasn’t it? Well, your welcome. It was a learning lesson. Consider it my gift to you. ūüôā 

Hope you had a happy Tuesday! 

Woohoo! My life is a blog! Love and hugs to all! 

The Waiting Game — September 1, 2015

The Waiting Game


Far too many of us, with chronic illnesses and without, have participated in this all too familiar game…the waiting game.

I spoke to a very special friend tonight about tests and was reminded of this process. Do “they” (you know who “they” are – the doctors, hospitals, insurance companies, any schmuck that answers the phone and puts you on hold) not know we just want to get the test done and get the results?

I¬†go to the doctor and am¬†told I¬†need some tests. I¬†call to schedule. I¬†go through the all too familiar –¬†Press 1¬†for English, Press¬†2 if you are constipated, Press 3 if you are going to yell when we pick up…etc. I¬†press all of the appropriate buttons only to find out that all agents are busy helping other pissed off patients right now so please leave a message and someone will (might) call me¬†back as soon as they are good and damn ready. I¬†leave a message. I¬†WAIT for a return call. I¬†give myself a deadline. If I¬†don’t hear back in a day, I’ll call back. I¬†sit by my¬†phone 24/7 and no call. I¬†go and take a shower, the fastest one ever, and guess what – I¬†missed their call and they are now closed for the day. Son of a B*#@h!

The game continues and so far…they are winning. I call them back the next morning. I go through all the motions and get through this time. The representative answers and tells me¬†that she would LOVE (I bet!) to help me¬†but I¬†will need prior authorization from my¬†insurance company in order to schedule the test. Again, I WAIT. I¬†get the authorization, after 3 separate phone calls to the insurance company packed full of bitching about it taking so long. I¬†call the hospital back to schedule the test.

The nicest woman to ever work at the hospital answers. I was so relieved. She took all of my information and scheduled the test for me. Almost there.

I get to the hospital on test day. I arrive early. I always arrive early. They sent me to the changing room and I change into an extremely over sized hospital gown and I sit in the waiting room, the drafty, crowded waiting room. As if waiting isn’t enough, waiting feeling half naked in a room full of strangers makes it much worse. I find myself looking around the room at everyone’s socks and shoes. How odd people look in hospital gowns and socks. I really can’t explain why, but I find myself laughing about it. They finally call me¬†back to the room. The test, not so bad, only takes a few minutes. The hard part is over now, right?

You should hear the results in a few days. HA!!!! ONE WEEK LATER…NO RESULTS. I call for the results. The nurse will have the doctor call me back. The nurse can’t tell me. Oh God! This must be bad.¬†This is it! I start googling all the possibilities. Before I hear back from the doctor, I have my dress picked out for my funeral. Blue, I look good in blue. It brings out the color of my eyes. What am I thinking? Who the hell is going to see my eyes? That’s creepy! The phone rings…it’s the doctor…I take a deep breath…she tells me to relax…the test is negative. Oh God I knew it! It’s over! How can I tell my kids?

Wait what did you say? Negative? Finally I got a negative result!!!! I rarely get negative results!  Woohoo! No blue dress for this chic! This waiting game is over.

Well played pain in the ass, stressful test…well played. But, I won this one!

Woohoo! My life is a blog!

In My Wildest Dreams — August 28, 2015

In My Wildest Dreams


Or am I just a crazy girl with dreams? Either way…I have some real insane dreams. That’s what happens when you mix the plethora of medications I take with…well…sleep. And the odd part is that I can’t remember what I did last week but I remember in great detail my extremely vivid dreams.

I thought I would share with you some of my recent doozies. And, if you like them, maybe I will add my latest and greatest to each blog. Trust me, they are crazy.

The night before last I had a dream that Tim and I bought a baby boy. That’s right…we bought a black market baby. Insanity, right? Well, it gets worse. We bought this baby for $1000 from a young-ish couple who couldn’t keep him. We put the baby into day care and then went on vacation for two weeks…without him. We came home and went to pick him up from day care and he wasn’t there. Imagine that? And I was mad! I called 911, while realizing they would probably want to know why we left for 2 weeks without our baby. Our sweet little baby boy…uh…Thomas…Patrick? Yup…couldn’t remember his name. I searched through a little notebook where I had doodled a bunch of names hoping it would jog my memory…nope. Well, luckily (or not), the birth mother and father showed little Thomtrick. She was demanding more money. Oh and Tim and I were living with my ex-husband. And, it was apparently Christmastime because someone stole half of our artificial tree, I never have an artificial tree, and stole ALL of my Hallmark ornaments (I’ve collected them since I was 13). I asked the birth father if he cared if we “adopted” his son. He told me he really didn’t care because he was dumping his girlfriend that night and he could care less. Now that is a good dad (says the mom that couldn’t remember her black market baby’s name and left on vacation without him). We agreed to give her more money. I don’t think we ever got Thomtrick back. The last thing I remember I was riding in a car with the birth mother and she told me that they had been in an accident the night before. I asked if anyone was hurt. She told me the father was killed. I asked her if she was killed. I am a bright one in my dreams. She answered no. I finally asked about that poor damn baby, whatever the hell his name was, and he was fine too. Then I woke up. Imagine waking up from that dream! If I were a drinker…maybe it would make sense. This is just a normal night in my head.

Last night while at the sleep center, I kept dreaming I was awake and talking to the nurse. In my dream, she told me I was hissing like a dinosaur, with my tongue out, in my sleep. I remember being afraid I was possessed. Not a lot of opportunity to dream since I slept like 5 minutes. Turns out the 20 oz. Wawa decaf coffee I had on my way to the study last night must have been caffeinated. But on the bright side, after she removed all the wires from my head, I had mountains of goop all over my scalp. I must have looked a sight leaving the sleep center this morning. Remember, it was located in a hotel. Luckily it was a nice hotel and not a “no tell motel”.

That is all from me today. What is your craziest dream? Judgement free zone…I promise. I mean really, look what i just shared. I sound like a monster. Trust me, I would never buy a black market baby.

Woohoo! My life is a blog!

Home Sweet…Homewood Suites? — August 27, 2015

Home Sweet…Homewood Suites?


Huh? You read it correctly. Blogging from the beautiful Homewood Suites Hotel. Why, you ask? I am having my somewhat annual overnight sleep study performed. What’s better for a person that has trouble sleeping than to hook them up to 30 plus wires all over their face and body, know that they are being watched and listened to all night (EEK!) and think they will actually sleep?

Having done this test a few times already, I feel like I am an expert. This, however, is my first time doing it in a hotel and not a hospital. At first, I have to say, it felt a little shady when they told me to come here. But, I have to tell you, it is pretty nice, all things above considered…wires…people watching, etc. I packed with me my favorite pillow (squishy – don’t judge…my pillow has a name and I love her) and my cupcake blanket to help me to feel at home. I hope they don’t mind that I play Crazy Kitchen on my phone till I get sleepy. Somehow I think they will frown on that activity and this activity…but I’ll be brief.

I have already been diagnosed with Obstructive Sleep Apnea. And I am supposed to use a CPAP machine. Do I use the CPAP machine? That would be a BIG hell no! First of all, have you ever seen one? I feel like freaking Darth Vadar wearing it. Oh yea – good night, Tim. I’d kiss you good night but I have this contraption stuck to my face. Second, I have very sensitive skin. I have tried several different masks and all of them have rubbed my skin raw. BUT, with all that said, the last time I went to my pain management doctor, he said I had to have another study done because if I still have sleep apnea and I am taking one of the meds I am currently on…wait for it…I could die in my sleep. Well OK then Mr. Doctor, why don’t I just go ahead and have that test done again?

I will have to wrap as the nurse just came in and gave me the evil eye and because I don’t have my dragon. I think Crazy Kitchen is out because they are not loving my phone activity.

More to come tomorrow. Remind me to tell you about Pill Pack. I think I might love them!

Woohoo! My Life is a blog!

It’s fun to stay at the… — August 26, 2015

It’s fun to stay at the…

ymca (2)

That’s right…I love the Y! I never told you that I worked for the Y for 13 years. That is where I “retired” from when my health drastically¬†declined. I visited there today. It is always bittersweet. I would have worked there forever…if my health allowed. Visiting there feels like going home and seeing family instead of old coworkers. I have to admit that most of my friends are people I have worked with at one time or another at the Y.

I started at the Y when the boys were little and I just needed some mental stimulation a few hours a week. You know, a break from Barney and the Teletubbies. It was also good because as an employment bonus, I received a membership. I brought the kids in for swim lessons or just to play in the pool. They loved it. As time went on my and family situation changed, my employment needs changed also. I moved into¬†a full time position¬†with the Y that allowed me to have the kids in after school care and still work. The perfect job for a single mom. Now I know this sounds like a paid endorsement for the Y but for real…it’s not…that is just how much I love the organization…still to this day.

I remember the day when I posted for the Executive Assistant to the Executive Director position. I was so nervous. I was really¬†in need of the new position and more money. Raising two children alone was not easy. I remember borrowing clothes to wear for the interview. Actually, truth be told, I bought clothes at Goodwill. I was so embarrassed but I had to do what I had to do. I was so excited when I was offered the job. Would I like the job? UH…hell yea I would like the job. That lasted a year. She moved on to a bigger position and guess what…so did I.

I ended my career in the position of Executive Assistant to the CEO. Now that was an interview I will never forget. I was so nervous I thought I would pee my pants. But, I kept it together. I only slightly knew the CEO at that time and was still very nervous around him. It was a long shot that he would actually ever hire me but I was just crazy enough to go for it. And turns out…after the second interview…he hired me! I had a HUGE office with so many windows (8 huge windows) ¬†and a fireplace (it was an historic building – we didn’t actually light fires in it) This is the building we worked in. We leased the top floor. See that top floor, left side ¬†– the 3 windows – that whole wing was MY office!


Anyway…that CEO became like a father to me and still is to this day. I adore him and his wife and spend time with them often. I danced my¬†father-daughter dance with him at my wedding. The day he retired was a sad day. But, I was so happy for him and his wife that they would get to enjoy life together retired while they were young enough to enjoy it.

My next CEO was…my boss before my last CEO. That’s right. It was like old times. Back together again. This time in a new building with a much smaller office (more realistic sized…lol) It was such a smooth transition and she had taught me so much. She had really prepared me for the job. We are also still close to this day and actually had lunch today. I have been very blessed to have great bosses.

As time went on, I was not able to handle all the stress and the schedule of my job. They were so awesome about it. They allowed me to stay but I moved a “desk over” with someone else supporting the CEO and I supported the COO and the CFO. I loved them both and consider them both like family to me. They were so patient with me and understanding during my sick times and times when my brain fog was so bad no one could make sense of me…not even me. I mean seriously, I took minutes for a meeting one time and I got them back with a “few” questions. WOW! They were being nice. It looked like my dogs had walked across the keyboard back and forth and then maybe did a jig. It was unintelligible. They stuck by me til the end in spite of it. I got very sick and spent about a month in the hospital and then took short term disability and then long term disability and even then, they would have welcomed me back with open arms. ¬†It was the hardest decision I ever had to make. I wasn’t ready to leave. I wanted to retire from my job when I was old. I was the “go to” person. I knew answers to all the questions. And…suddenly…I didn’t know the answers and I think people knew it. I was angry at my disease for taking another piece of ME away. I was so sad to leave.

They had the nicest luncheon for me. Our CEO said a few nice words about me. Me being me, I invited the COO and the CFO and anyone else willing to say nice things about me too. They did. I liked it.

So, I visit every couple of months to have lunch with friends. You know, lunch for me…means broth. So I go to have broth with friends. Today, I sat in my old desk. I even answered a call. Shhh…don’t tell. I’m probably not supposed to do that. It felt so good. I know I made the best decision for me and for my health, but damn, it was a tough one.

Oh – did I mention that Tim also works there? Haha! He worked two offices down from me. So when I visit I get to see him too, but don’t often have lunch with him since I see him all the time. Sorry honey! But, you know it’s true!

So yes…it is fun to stay at the Y M C A…I just wish I could have! Once again, I have to say, I am so blessed.

Woohoo! My life is a blog!

And a very Happy Birthday to my very special Uncle Joe! I love you!

happy bday

Thanks for not looking me in the eyes…. — August 25, 2015

Thanks for not looking me in the eyes….


First I wanted to close the loop on the car.¬†My baby is back to normal again and I am so happy! It turns out…very long story…but I will try to be brief…the first flat just happened because my hubby hit something (sorry Tim) and cracked the rim. The second blowout was because they put a new tire on the cracked rim – don’t ever do that! After that, fast forward to Ocean City – that VW dealer put a new tire on that was defective and it was a blow out. They replaced that tire with another defective tire that got us home but then went flat. I took it to a local dealer in Downingtown (not mentioning any names but would never go there again) and they had it for a week and NEVER found a problem. In fact, made me feel like a stooge for being concerned. I had finally had enough and picked it up from the Downingtown VW dealer and brought it to Garnet VW after talking to them on the phone and setting up an appointment for the next day. Of course you know that when I left the Downingtown dealer, the air pressure indicator light came on immediately and it was flat and ruined the next morning when Garnet opened. (I left the vehicle there after hours for service the next day). Within 2 hours of being open, the service manager called me with preliminary findings about the defective tires. He was correct and fixed the problem and now my baby is like new again! If you are local, I 100% recommend Garnet!!! They did what 2 other dealers couldn’t do! Hopefully, this is the last you will hear about my car.

Ok now – I hope you all had a great weekend. As for us, it was all I had hoped for – full of rest and family…and of course the poop covered dogs you already know about. And now to the actual point of today’s blog – I warned you I am all over the place – I recently had to have a few GI tests done. Unfortunately, for many with Scleroderma, GI issues are just an added bonus.

I arrived at the hospital for two tests, one of which was an anal manometry. When my GI doc suggested I have this particular test done, I had no idea what it enTAILed, BUTT was less than happy that it included the word anal.(see what I did there?) I kept referring to it as the anal probe. He didn’t seem to think that was funny. I, on the other hand, did. ¬†I wasn’t far off as it is a test to check bowel function. WHOA…I gotcha…TMI! OK. Back to test day. I was taken back quickly which was a great relief. I hate sitting in the waiting room imagining what awful things are about to happen to me. I was given the usual hospital attire. You know, the “check out my fat ass” gown. I love it, really, I do.

I was led into a procedure room and asked to lay on the table facing the wall. From that point on, several different people entered the room and introduced themselves but, I never saw their faces. They were just voices. Voices that happen to be shoving things up my ass, but still only voices… without faces. The test was awkward to say the least,and only slightly physically uncomfortable. It took about an hour. I have to admit it felt much longer.

The one male voice announced that they were almost done. There was just one last step. They were going to insert something into my bottom and send me down the hall in my “hospital’s finest gown” and I had to “get rid of it” while counting how long it took to do so. Sorry – I couldn’t leave that part out but tried to be gentle. I got up, looking at the floor avoiding eye contact, cheeks clenched…started my walk down the hall.

Mission completed.

I went back to the room, doing the walk of shame, em-BARE-ASS-ed, and ready to be done with this whole thing. And there they were – 4 of them in total. They told me I did a good job…I’m sure they say that to everyone. And then told me I could get dressed. I thanked them for being gentle and then thanked them for not looking me in the eyes until after it was over. Granted, it was awkward to have strangers probing me, but would have been even more awkward to know that one of them was an exceptionally attractive male doctor. It never fails!

And that my friends is what you call a pain in the ass day! Wishing you all a week free of pain in the ass days!

Woohoo! My life is a blog!

Handicap Parking Only — August 24, 2015

Handicap Parking Only


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? — August 21, 2015

Why Tubie or not Tubie?


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!

Infused with Love ‚̧ԳŹ — August 18, 2015

Infused with Love ‚̧ԳŹ

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!

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