Tubie or not Tubie

Tubie or not Tubie

Wait…where have I been? — October 19, 2015

Wait…where have I been?

I'm back

What can I say? I have been a big, huge slacker! Nah! Actually, I have been very, very busy partying! Yup! You heard me correctly. I am not usually much of a partier. Actually, I NEVER party! But, let me tell you, THIS chic has been the life of THIS party, really…the funniest one at the party, the loudest one at the party, the best looking one at the party! How can I be so bold? I’ll tell you…I was the ONLY one at the party! That’s right! I have been busy hosting and attending the biggest ever PITY PARTY of ONE for ME!

I NEVER feel sorry for myself. I never allow myself to go there. I know I have an illness. I know I wake up everyday feeling like crap. For whatever reason, I hit a low and I couldn’t pull myself out of it. You know, I do know what happened. I’ll tell you. You all know I have a feeding tube. Well, I started a new immunosuppressant drug and was able to tolerate a very limited and very small amount of food for a very short period of time. If you haven’t figured it out yet, I like to dream BIG! In that small period of time, I had myself convinced I would be able to eat again and have my tube removed. As a matter of fact, I could almost visualize having it removed. Even googling how to take it out and dare I say? Remove it myself? I would never. Or would I? I was picturing my stomach without the stoma and what the scar would look like. How easy it would be to get ready without the tube and gauze. How nice it would be to live without the pain of granulation tissue. How wonderful it would be to dress without hiding this dangling tube. How wonderful it would be to go out to eat with my family or friends and order something other than the “broth du jour”. That did it for me. That was it. I psyched myself up for something that wasn’t going to happen. I know better than to do that. I guess I was being a rebel.

I remember going to bed the night before all of this happened. I was feeling exceptionally bitter and rebellious. I didn’t want to wear my nasal cannula with my oxygen, I didn’t want to hook up to my pump to feed, I didn’t want to have scleroderma anymore, I was fed up with it all. I guess that is normal when you have a chronic illness. I am told by my friends that I should allow myself to feel all of these emotions. I am not good at allowing myself to feel sympathy for myself. I guess that is why once my pity party started, I had a hard time pulling the plug on it since I had never gone there emotionally.

So, the party is over and I am back. I feel like myself again. I am 100% back on the pump. God made that decision for me very clear after a very bad GI week. It was as if God said, “Look here Missy, don’t even think about taking that tube out!” I’ve accepted it…AGAIN, for now. I am still dealing with some dehydration issues but I am working through them.

Since the last time we talked, we had our local Stepping out to Cure Scleroderma Walk in Philadelphia. This is our 6th year participating in the walk. TEAM JOEY was very much present again this year and again won MOST WALKERS!

Check us out! Not everyone made it into the pic sadly. But, they will be in there soon. Thanks to photoshop and my talented hubby.

team joey 2015

And, we raised over $8100 so far this year. I love my friends and family that support me and the Scleroderma Foundation each year! Check out my great shirts. Did I tell you that my awesome husband, Tim, is a graphic artist? He has designed all 6 of my shirts. Funny thing, once we started dating, the shirts got much better…hmmm…lol! But, for real, they did! Each year, the shirts represent something that happened that year, hence the housewife this year, we got married in 2014. Team Joey Tshirt 2015

Back to my absence, I hope you guys haven’t given up on me. Thanks to those that reached out to me in concern due to my silence. I really appreciate it. Exciting times coming up. Tim and I will be celebrating our first wedding anniversary on November 14th, Christmas will be here before you know it, my youngest son will be getting his license in December and Tyler and Kelsey will both be graduating high school in June (and yes – I am already planning the party – Proud Momma!)

No more partying for me. Next time, I promise to invite you all!

Woohoo! My life is a blog!

Let the specialist games begin! — September 21, 2015

Let the specialist games begin!

Lady sees door sign next to ENT: 'Heads, Shoulders, Knees and Toes'.

Happy Monday! I hope you had a great week. Me you ask? Survived a week of a broken fridge, a water logged phone and sleep deprivation but I am still standing and still smiling. Today starts a long line of specialist appointments in the city of Philadelphia. And for those in the area, the city is buzzing with preparations for Pope Francis’ visit this weekend. So, travel will be a real treat! Maybe I can hitch a ride in the Popemobile. You think so?


Today starts with PFTs (Pulmonary Function Tests), followed by a visit with my pulmonary doctor. I have to admit I am concerned about these appointments due to recent lung issues, excessive dry cough and shortness of breath. In addition, I had that sleep study done a few weeks ago and just got the results on Friday when I visited my pain management doctor. Turns out my pulse ox drops down to 52% when I am in a REM state of sleep. Not exactly what I wanted to hear. Which leads me to my next appointment.

I see the sleep doctor that read my study on Wednesday. I am curious to learn how he plans to save me from dying in my sleep. lol! In his report he suggests a CPAP (which does not work for me because of the extremely sensitive skin on my face and the fact that I am already pretty tied up at night with the feeding tube apparatus) or upper respiratory surgery. I will keep you posted.

I round off my visits with an appointment to my Rheumatologist, my absolute favorite doctor. If not for her, I would not be here today. I truly believe that. When I count my blessings, she is high on that list. When I was first diagnosed and struggling to find my way, luckily I found my way right to her. Thank you N! I am forever indebted to you!

Outside of that, I am anticipating the start of Fall in 2 days. I love fall. My porch is already decorated with pumpkins, mums, owls, and corn stalks. Honestly, it looks like Autumn puked all over my front porch and I love it! It really is the simple things that make me happy.

We went to the wedding of two special friends this weekend, it was a great time and always wonderful to see two people happy and in love committing to one another. And also great to visit with so many great friends. From that happy extreme to a solemn one. We also went to the funeral of a friend’s mother. It was heartbreaking to see her, her family and her children so upset. I unfortunately did not have the honor to know her mother, but she seemed like an amazing woman.

Saturday night, I spent an awesome night with my children. As the wedding was a weekend event, Tim went back to the festivities and I stayed home to spend time with Tyler, Jake and Kelsey. The brides were very understanding and encouraged me to enjoy my time with the kids, which meant so much to me. I love my time with my children and appreciate every second I have with them.  I am so blessed to be the mother of these amazing children. They are my greatest accomplishment in life.

So my message to you this week is so simple, take time to enjoy every second. Do not take anyone or anything for granted. Nothing is guaranteed. Enjoy your loved ones every chance you get. Be present. Make wonderful memories that will last a lifetime in their hearts. Spend your time and your attention on what really matters. It really is that simple. Follow these tips and you too will have a happy heart.

Love and hugs to you all!

Woohoo! My life is a blog!

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!

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!

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!

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