Joey, Just Joey

Joey, Just Joey

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! 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. 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?

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 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!

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!

lukens

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.

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…

keep-calm-and-avoid-eye-contact-13

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 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

disability

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

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

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

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

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

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

Woohoo! My life is a blog!

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!