Tubie or not Tubie

Tubie or not Tubie

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!

Why Me? — September 14, 2015

Why Me?


You know many times I find myself asking, Why Me? But not in the way you are thinking, I’m sure.

I woke up this morning and my stoma (hole where my feeding tube goes into my stomach) was so sore and I was a little bummed. But I took a second and looked around as I got out of bed and said asked myself, “Why me?”  Why am I blessed enough to be able to get myself out of this bed and be able to deal with this situation. Why am I so lucky to have great health insurance and live in an area surrounded by some of the best hospitals in the country? Yup! The pain sucks but why should I harp on that when I can focus on all of the blessings that surround me?

I have a house, it is small and I could complain about not having enough space, but this small house is a HOME. It is OUR HOME.  When my children and their friends or our family and friends are filling its small rooms, our house radiates love and there always seems to be enough room for everyone to feel at home. I have a small yard, I could never have a large garden or a pool, but on a fall morning, I can walk barefooted across the dew covered grass and hear the birds chirping and nothing else and suddenly my yard feels like it roams for acres and it is all the lawn I need.

I can’t eat all the food I want to eat, but I am so lucky that there is the technology to allow me to get all the nutrition my body needs via the feeding pump. Why me? I love to eat! Why is this disease taking something else away from me. And then I think…Why me? Hmmm…Why am I blessed enough to lose the ability to eat and to not lose my ability to see my children’s faces,to hear my husband’s voice or breath in the warm air?  Thank you Lord!

I am so blessed to have two amazing sons. I am so lucky that I was blessed with two beautiful pregnancies and births of the best two sons I could have ever dreamed of, all before my health changed a bit. Some women are diagnosed at a young age and are never able to conceive. So, with all of the things I’ve done wrong in my life, why me? How could I be lucky enough to have them? They are “my reason”. I thank God everyday for choosing me to be their mom. And to top it off, I have the daughter I never had in Kelsey. My maternal cup runneth over. 

I was a divorced mother until the age of 42. It is hard to date with a chronic illness. Why me? How am I going to meet a man when I am in and out of the hospital? I could be mad that most men didn’t want to be burdened with my health problems. But instead, I said, why NOT me and found the most amazing husband. He is my best friend, partner in crime, peanut butter to my jelly, caregiver when I’m sick, and even laughs at my dumb jokes. There are so many women in my situation that don’t have a partner. Why did I get so lucky to have a man to stick by me during chemo, thinks I look hot in a hospital gown and doesn’t get grossed out by my feeding tube…even when I do? I am blessed.

I was raised by a single mom, no dad around. Why me? But NO…my mom is the best mom in the world…all day, every day. She played mom and dad as needed throughout my whole life and I never felt slighted. It was never an easy job for her and still isn’t it, but she always has a smile on her face…ALWAYS! And when she couldn’t handle me for whatever reason (aka I was being a HUGE brat) I had my amazing uncles to step in and make me stay in the hospital when I needed to, give the firm “talking to” that I often needed in my teen years. Why me? I grew up in a broken home. HA! Broken home? I don’t think so! Why did I get so lucky to be blessed with the BEST mom in the world with the BEST uncles in the world and more parent figures than any other kid I knew. I was one loved kid!

As an adult, I have been so fortunate to have friends who are family and family who are friends. I hope that makes sense. It truly is the only way I can describe it. You know who you are…you touch my life each and every day with your love, guidance, support, advice and friendship. You all play different roles…all beyond important to me.

My heart and life overflows with love and respect for the people in my world that God has so carefully hand selected for me along the way. Why me? Why not me? Thank you God for blessing me with the ability to see the beauty in all situations that you have placed me in. Only you could create these story lines.

Thank you friends! I love you all!

Woohoo! My life is a blog!

It’s a Labor of Love… — September 7, 2015

It’s a Labor of Love…


Happy Labor Day to all! I hope you have enjoyed the day with family and friends and…for those of you that can eat…good food. It feels like it has been forever since we last spoke. Where did we end up last time? Hell, let’s just do a recap of the week.

Monday was the first day of school. It feels like much longer than a week ago. That was the day Jake went to tech school but forgot his paperwork and his change of clothes for actual school and I met him in a gas station parking lot on his way from point A to point B. I gave him his signed paperwork and his clothes and like a normal 16 year old boy, he proceeded to change his clothes in the middle of the parking lot. Oh well. Mission accomplished.

Tuesday was Tyler’s turn. He forgot his work shirt at his dad’s house. When I asked him where it was and if it was clean, he replied, “in my room and maybe…lol”. In other words, who the hell knows where it is and you can bet your ass it’s not clean. I went to his dad’s house, found several unclean shirts and proceeded to do several loads of laundry. Wasn’t what I had planned for the day, laundry at the ex’s, but I will always do what is best for the kids. Granted I had just gotten out of bed when he texted me in the morning and off I went. Not really thinking ahead that I would have to drop off his work shirt at the school office looking like a crazed lunatic with a cockatoo perched on her head. That’s me. Just smile and act sane, nod and say have a nice day.

Wednesday, hmmm…what happened on Wednesday? Oh that’s the day I played plumber. I had a small drip in the upstairs bathroom sink. I went to Home Depot, bought the appropriate tools for the job and came home and fixed it. Yea right! It was not that easy! I went to Home Depot like 3 times and had to disassemble and reassemble the same thing about 6 times because I kept doing it wrong. I finally figured it out. I felt pretty good about myself as I stood up, hiked up my big girl panties (don’t want to leave the bathroom area with plumber’s crack) and went about my day. All is fixed…or is it. Dum dum dummmm…..

Thursday was my caretaker day. Kelsey had all 4 of her impacted wisdom teeth removed. Poor girl, she looked so sad but handled it like a champ. She rested a lot throughout the day. She was an easy patient. I got a call around 5 pm from Tyler that his car had broken down on an extremely busy road in the middle of an extremely busy intersection, and of course at rush hour. I called AAA and started the trek to get him. In the meantime, a few guys from a garage close by pushed him out of the intersection and into their parking lot. Convenient yes. But I really appreciated them getting him out of harms way.Kelsey and I brought him home and tried to make the best out of the night. He had to work the next day so he took my car.

Friday was a real kicker! Day started early with Tyler leaving at 6:30 am to go to work. Around noonish, I was in the downstairs bathroom and I noticed a bubble in the paint on the ceiling of the bathroom. This can only mean one thing…water leak. I am trying to think of where it can be coming from when I remember a few days back when I did my fancy plumbing repairs…oh shit! Up the steps I go! With one swipe, rip everything (cleaners, mouthwash, etc) from under the sink and find that the hot water valve is dripping…bad. Oh frig! I think to myself, maybe it just needs to be tightened, righty tighty, lefty loosy. whatever the hell that means. I was tightening it (or so I thought) when the valve shot off the pipe and steaming hot water was shooting straight out full power. I panicked, I cursed A LOT! I went to the basement to turn off the main water line. By this point there was about an inch of water all over the bathroom floor, with almost every towel from the linen closet now lining the floor. At about this point, I hear a lot of action downstairs. Turns out the water was also flowing through the ceiling into my laundry room and the downstairs bathroom. Not sure flowing is the right word, kind of like a torrential downpour inside my house. My clothes are soaked, every towel and rug is soaked and I am beyond frustrated. I waved the white flag, turned in my plumbers crack and called a real plumber. He came within 30 minutes and had it all fixed up. And of course, found out my main water valve is about to snap, that’s getting fixed on Tuesday. That excitement was followed by many loads of laundry. Good times! Oh wait,there’s more. My throat clearing and coughing got continuously worse through all of this to the point that I needed to go to urgent care on Friday night around 7 pm. Yup, bronchitis! A few more scripts added to the mountain and stating to feel better now.

Saturday morning brought a call from the garage about Tyler’s car. It would be done that afternoon. Good news! Bad news…it will be $634! Of course it will. But, at least it will be done. Tyler went out with some friends that night but Kelsey didn’t feel up to it. We took her out to dinner and she ordered soft food. She had to be sick of scrambled eggs, jello, pudding and broth. While we were sitting in the restaurant, I noticed my tube seemed wet. I thought my tea must have dripped on it. I dried it off and once again it was wet. I wasn’t dripping on it, my tube had cracked. It had to be replaced. Of course it did. So off to the hospital we went. They were unable to replace it that night because there wasn’t a doctor in Interventional Radiology to do it so they sent us with gauze pads, silk tape and told us to duct tape it. He actually said “Duct tape fixes everything”. Scary to hear an ER doc say that. Makes me glad I didn’t need anything more critical.

Sunday morning we went back to the hospital for my new tube, We got there at 8 as instructed and I was on a gurney in the hall outside of radiology until 10:30 am. I slept the entire time. Poor Tim, not so much. I think he just paced. I was finally taken in and had my new tube placed and was home by 12:30. Everyone was home that night so the day turned out to be a good one!

Today had been a day of rest for me, well after I make breakfast. I woke up to Jake at my door telling me we have a problem. The way this week has been, not what you want to wake up and hear. The problem was that I was asleep and he, Tyler and Kelsey were awake and wanted breakfast. Up and at ’em…bacon and pancakes for all. I love my kids! I took a long nap today. It was peaceful and felt so good.

I ask you…is it just me, or is my life just a tad on the crazy side? Wishing everyone a great week! See you next Monday!

Woohoo! My life is a blog!

Change of plans… — September 2, 2015

Change of plans…

 Sorry I have been slacking on my blog posts lately. Turns out back to school time is still a crazy time of the year…even with a junior and senior. But, I wouldn’t change it for the world. 
Day one, I get a text the one of my dear sons forgot all of his paperwork  at his dad’s and asked if I could pick it up and bring it to him…I did. 

Day two, I got a text from my other dear son that he left his work shirt at dads and could I go find it. So…I did. It was dirty. So I washed it…at dads. And brought it to him. All was good.

Even on my worse day, I will drop everything and drag myself wherever I need to be for my sons. I love them with every ounce of my being. 

Tonight is Back to School night at Jake’s new school. I am anxious to meet his teachers. After all, up until this year, my kids have been at the same school since kindergarten. I knew everyone there and they knew me. Change is hard. Not for Jake, he loves it, but for me.

I have been having a really tough week with my lungs. The coughing and throat clearing have kicked into ultra annoying high gear and is sometimes hard to breathe even. Luckily, I have a pulmonary appointment coming up. I don’t have a good feeling about the outcome of my pulmonary function tests. But, whatever it is, I’ll deal with it and keep trucking along. After all, what’s the alternative? 

I am super excited for autumn. It’s my favorite season of the year. I love pumpkins and all things pumpkin. I love fall colors and falling leaves. I love big sweaters that cover my chubby belly and now my tubie paraphernalia. I will miss snack size candy bars left over from Halloween night. I might have to buy candy that I hate. I’m not sure they make any candy that I hate though. Hmm, may have to think about that one. The one downside to fall, is that winter is just around the corner. 

I hate winter. Winter brings extra joint, muscle and bone pain, even more fatigue and the worst of all….digital ulcers. Extremely painful sores on the fingers caused by lack of circulation, a condition called Raynaud’s. My ulcers often lead to gangrene and a guaranteed “getaway” to the hospital for a week. Not the kind of vacation I want.

Enough of all of that…today is warm and clear. I will enjoy it while it lasts. I don’t want to rush the warmth away.  

With all that said, I will only be blogging once a week now. Expect to hear my antics every Monday. 

Please don’t give up on me though!!!

My life is just exceptionally crazy right now, which means crazier stories to share! See you on Monday!

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!

Another first day of school… — August 31, 2015

Another first day of school…

It’s that bittersweet time of the year. I would not call it the most wonderful time of the year. I love having my sons around as much as possible…. Realizing they are growing up so fast and will be on their own before I know it. 

Tyler and Kelsey are starting their senior year today. Jake is starting his junior year at a whole new, much larger high school and also starting tech school. The clothes and notebooks are all bought. Forms are all filled out. But…still…something doesn’t seem right. Something is not ready. And that something is…ME! Where has the time gone? It seems like yesterday I was laying out their clothes and packing their lunch boxes. No school buses this year. No PB & Js. Just two almost grown young men another year closer to independence. 

I am so proud of the men they have become. My heart is so full of love for them and my cup runneth over. 

For all you other parents going through first day of school melancholy or can relate in some way, I send you a big hug. 

I think I will make this am’s coffee Irish. This morning needs a little kick! Cheers! 

It’s 5:00 somewhere..maybe 5 am but who’s keeping score? 

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…

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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!

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