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! 

You really never know… — May 12, 2016

You really never know…


Have you ever really stopped to think to yourself…what if? What is today was the last time I saw this person? Or what if those were that last words I said to…whomever? I know…deep thoughts! Today was a sad day. I went to a funeral of a very dear friend’s grandmother. Funerals are always awful…duh! But this one was really sad to me. I didn’t cry, I held it together and even cracked jokes to make my friend and her family laugh. It’s what I do. Can I tell you? I DO NOT HANDLE SADNESS WELL! I am THAT GIRL! I can go full stand up comedy hour. Don’t get me wrong…it’s not fake! I am that funny…If I don’t say so myself! It is just NOT APPROPRIATE TIMING!  I just can’t help myself. I do not like to see my loved ones sad. Hate it! Every bit of it!

So, last night as I was mentally preparing to head to Delaware (my hometown – I’ll get more into that in future blogs), my mind races with memories of my younger days in Wilmington. The church that the funeral was held in today was actually directly across from the house I grew up in. It was being held in MY CHURCH! I used to love to listen to the church bells at night as I fell asleep. It was always very comforting .The city has changed so much. But somehow, being in that church, time stands still. I digress. In my mind, I was imagining how I would somehow love to walk through the house I grew up in.I moved a lot as a child because of my parents divorce. This house we lived in for a while. I felt grounded there. I had a lot of memories there. I wanted so badly to just see the inside once more. But, how in God’s name would i possibly do that? Was this even realistic or were my night meds doing all the thinking for me? I imagined every angle of the story…or did I? Several scenarios crossed my mind: 1 -No one would answer the door (probably the best case scenario),2 – A little old lady would answer and offer tea and cookies and we would reminisce about how Wilmington used to be, 3 – I would enter the house and never be seen again (worse case scenario but probably most realistic). Well, As I drove down the block approaching my old house the unforeseen scenario 4 hit me square in the face…the house was no longer there – torn down. I never even thought that possible. I guess the last time I drove by and saw it was the last time I would ever see it. Thankfully, I have my memories. I pray that as my mind has its moments of confusion and fogginess, I don’t lose the memories I hold dear. Until then, I replay them in my mind over and over. But, really though, who thinks of knocking on a door? Talk about a cloudy mind! I must be losing it! Thank God it was torn down! I probably would have never made it home today! I think I may need a baby sitter with me for now on. I have a Med Alert necklace at home…maybe a need a tracker implanted in my neck. I joke – but my mom reads this blog. If you know my mom, within about 5 minutes of reading this line, she will be googling human tracking devices. This is my life!

chip tracker

This evening, I got home and got a call from my own grandmother’s nursing home. She had a small scratch on her back. They have to call and notify me. I am happy they do. I will go and see her tomorrow to make sure she is ok. She used to be the most active woman ever. She taught me how to jump rope, play jacks, play cards (rummy 500) and so many other things. I loved spending time with her. Its sad. She had one son. My father. He doesn’t answer the calls from the nursing home. So they call me. It is so sad for me to put myself in that situation, with me being in a home and my sons not taking their calls. It really breaks my heart. All she did for him his whole life, and now she can’t “do” for him anymore, so she is “kicked to the curb”. Can’t even answer a call from the nursing home for a scratch or to approve a flu shot or to go for a visit. It turns my stomach. I will go and see her. I will tell her that I am 44 years old about…44 times and smile each time. I will tell her that Tyler and Jake are 16 and 18 about the same amount of times. She will, in the sweetest way ever, tell me that she is glad she is younger than me. And when I ask, she is usually just 16. That must have been her favorite age.

Health wise – I am ok. I am very tired but doing ok. Some new meds added to the regimen that are kicking my ass. But Scleroderma is known to do that. My GI is acting up again. My girlfriend mentioned tonight that this is when it started last year. I never even thought of that. Thank God for all of my favorites! I don’t know what I would do without my amazing friends! This friend in particular actually sat in the hospital with me last year and took notes for a whole day from all of the doctors and specialists so that everyone would know what was going on because I was so out of it, I had no clue! I heart you TE! The tubie option was brought up again – I declined. I am going to do new Gastric Emptying Studies. For those of you out of the Sclero world – The GES is a nuclear medicine study that involves drinking water and then solid food  (typically scrambled eggs with toast) with radioactive material in them and then tracking how long it takes to move through the GI system. Because I have gastroparesis, this test usually shows huge delays. We are now considering a gastric pacemaker instead of a tube. I’ll keep you posted.

On the home front, Jake and Liz had prom this past weekend – so freaking cute!!! Tyler and Kelsey have prom this weekend! LOVE LOVE LOVE!!! You know I just eat all of this up! I love it! I will post pics as soon as I get them all back from the photographers. Kelsey had a facial yesterday and hair and makeup on Saturday. It’s so different having a girl around the house. And I wouldn’t change it for the world! I have the best of both worlds! Then, onto graduation and the graduation party in June! Busy times for this family but all very exciting! I am one crazy, exhausted but extremely proud momma!

So, what was my point to this blog? Seems disjointed? Well, my point is loss is everywhere and is never easy and you can never be prepared. It will always hurt, even if you think you are prepared, it will still hurt. I watched my friend and her family mourn today and it hurt, they were hurting and it hurt me to see that. They lost someone that was the matriarch of their family. No preparation can ease that pain.

I thought I would see my old house today and maybe even in my crazy ass head, go inside. That didn’t happen. The whole damn house was gone! If I had know the last time I saw it, I may have stopped and taken a picture, looked a little longer.

My grandmother has lost her mind – just kidding. But, she has lost her memories. And that scares the hell out of me. That is my biggest fear. I never want that to happen to me. She does remember me. Which makes me happy. But, she has forgotten more than she will ever remember. In the process, she has lost her son. Not because of anything she has done. Not at all. But I guess in the process of growing older. That is heartbreaking. And the sad part is, she does know that he is not around.  And that is even more heartbreaking.

My disease has taken so much from me: my health, my job, my independence to a certain degree, my energy, my smoking hot body haha – who am I kidding? I didn’t have that before sclero! I can dream, can’t I ???!!!!, some of my cognitive ability and so much more. BUT….

IT CAN NOT TAKE AWAY – my love for my children, my husband, my family, my faith and my friends! And that is what keeps me going – EVERY DAY!

Love and Hugs to All!

Woohoo! My Life is a Blog! Continue reading

Tubie or Not Tubie? Hmmm…. — April 25, 2016

Tubie or Not Tubie? Hmmm….

confused girlWell…that really was the question. Sorry I have been seriously among the missing. I have been reminded by many that my last post was dramatic and then, I stopped posting. Yes! I am a drama queen…insert tiara on my curly head here, but…in this case…it truly wasn’t intentional. You know my life is bat shit crazy when it was too much to even tell you about it, so…i just kept it on the down low. But, I’m back and better than ever! I missed you all and I hope…you missed me too!

I really don’t know where to start, so in typical Joey fashion, I will just blurt out what comes to mind first. In October, our family grew by one. A beautiful, intelligent red haired, amazing little girl! It was an exciting and very emotional day. Most have nine months to plan for a new lil one but not in our house.

.red hair baby

If you haven’t figured it out yet, our house doesn’t exactly follow the rules of anyone’s norm. So, I woke up on October 24th with a family of 4 and went to bed on October 24th with a family of 5, no labor pains, no NEW stretch marks (don’t even get me started on that topic), a bit of a headache but a heart of enough love to take on an army. No, I didn’t have a baby. That would be completely insane and with all the meds I am one, would probably have 17 arms and 6 eyes. I can say this because it is true. Our sweetie pie, Kelsey, Tyler’s girlfriend of 4 years (since 8th grade and they are graduating from high school in 2 months) moved in with us. I won’t go into the reasons why some family issues made this a great option for her and we were more than thrilled to welcome her in. But let’s be real…you’ve read my blogs…wasn’t she already a member of our family? Like I said, I’m a drama queen, I like the build up! While we are on the subject of Kelsey, I am proud to say she was accepted into a very well respected and hard-to-get-into nursing program and will be starting in the Fall and we are so proud of her!

Tyler is doing awesome. He and Kelsey will both be graduating in June. I can’t believe it! Where the hell has the time gone? We’ve planned a really nice party for them and I can’t wait to celebrate their accomplishment!  I can’t believe it! Tyler just bought his first new truck and I am super proud of him! Tyler and Kelsey have their senior prom on the 14th and I will post pics from the photographer as soon as i get them. Her dress is gorgeous!

Jake is in 11th grade and busy as ever. And taller than me. It is so odd that my babies are all grown up and that I now have to look up to them. I love my sons and I feel so blessed to be their mom! Jake is going to the prom in a few weeks with his new girlfriend, Liz .It took him forever to let me meet her but I finally got to and she is really cute and sweet. I’ll post prom pics as soon as I get them.

Back to tubie or NOT tubie? So the answer now it NOT! That’s right! You read correctly! I had my tube pulled the day before Thanksgiving. It was one of the most difficult decisions that I have had to make. Why did I do it, you ask? Great question! There are many reasons. I will try my best to explain. These are not in any order of importance as all of these issues played a part in my decision. I had been having a lot of issues with my tube, care of, issues with granulation tissue and pain and being that my tube was placed inpatient, I really didn’t have a point person “on the outside” to help me with the issues. This left me doing a lot of hunting for answers and googling which is scary when you consider a GJ feeding tube is a REALLY big deal. I felt bad for my rheumy trying to figure it all out. She is amazing and I love her but GI is not her specialty. I started having issues feeding and was unable to successfully feed for almost 3 weeks and was in and out of the hospital being treated for severe dehydration. I was able to drink small amounts of fluids but not enough to keep me hydrated. Even with the small amounts of fluid, I was aspirating. To top it all off, my mental well being was suffering. Through the years of suffering with scleroderma, I am pretty proud to say, I have dealt with my ups and downs. I very rarely feel depressed. I handle it. I am by no means saying that I have NEVER felt like giving up. I would be a big fat liar! I have my moments/days/weeks that I feel hopeless. I try to mask it the best I can so that my family doesn’t have me on a suicide watch. But in all honesty, it is impossible to go through life being in pain and exhausted everyday without these feelings. I made the decision that I would try to eat selectively, once a day. I was able to do it. Turns out I could eat one very small meal, at the right time of the day, and the right kind of easy-to-digest food, sleep practically sitting up and survive. I did this for about 2 weeks. I still have  gastroparesis. Nothing has changed. It takes me about 15 hours to digest the small meal that I eat. I get full almost immediately. But, for me personally, this is what I needed to do – both physically and emotionally. Not everyone can make that change. And I am not at all recommending that. There are plenty of days that I second guess my decision. But I take comfort knowing that in the worst case scenario, A tube can always be placed again.That was a mouthful! I guess the kids aren’t the only ones graduating…

I’m a Tubie Graduate!super tubie

Other than that, things have been good. Mom is still here. She is her own bit of crazy. I really need to have a blog a week dedicated to her antics. It should be a vlog. I should follow her around with a video camera. You would pee your pants! Anyone that knows her says she should be her own sitcom! Trust me. Some network could be making a killing out of her and the best part if, she isn’t trying to be funny! I will put that on my list of blog subjects – Chatty Cathy. Look for it soon. I’ll tel you about the story when she brought me for an outpatient surgery. That is a real treat!

I went to see a dear friend yesterday in the hospital. She has had scleroderma for almost 19 years. She had a J tube placed today. We talked a lot about the process and what to expect after the tube was placed. I offered her all of my modified backpacks and the best advice I could give. She told me she always enjoyed my blogs. She used to message me when I didn’t blog and asked if I was OK because I hadn’t posted a blog. I needed to blog again for her. So, my dear Gigi, this is for you!get-well-soon-greeting-card-lettering-text-44403242 (1)

Rest and feel better soon!

Tim and I are enjoying being less than traditional newlyweds. Luckily, he has been my friend for many years. He knew what he was getting himself into. Poor crazy man! And he still married me! Go figure! The kids tease us and call us old people. We rarely get time alone. And nights that we are alone are typically spent watching a movie at home on the love seat followed by falling asleep in the same spot. We are wild and crazy like that! He is my rock, for real. I feel sorry for those going through chronic illness alone or without a supportive partner. I am blessed beyond beyond belief with a wonderful husband, amazing children and a mother (who is totally a one-woman comedy show) that would give up her life for any one of us! I have extended family that even though I don’t see them everyday, I know they are there and that makes me happy. I am blessed.

Although chronic illness sucks, I wake up everyday. Upon waking up, I cough for an hour. But, then the coughing stops. I don’t move fast. But, I am able to move. I am in pain…everyday. I am tired…every minute. But…I am alive. And for every day I open my eyes, I am thankful for another chance, even if it means to cough, to be in pain, or to be exhausted. I am alive. I am blessed.

Sorry this blog has been more fact than my craziness! Next will be more crazy! Promise!

Trust me when I tell you, my world never runs out of crazy…NEVER! crazy





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?

. pope

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!

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!

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