Joey, Just Joey

Joey, Just Joey

Author: joeylynn28

Did you say…1921? — August 10, 2015

Did you say…1921?

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Monday’s are always a blast…a new week brings a new “to do” list.

Like many people with chronic illness, fighting with the insurance company to cover claims is a regular task. It’s a game really. I call this game “How bad do you really want it?”. Sad, really. Because in reality, fighting with someone to cover a procedure that you really don’t want to have in the first place – sucks! It’s like, please, approve my colonscopy, chemo infusion, brain scan, or insert other dreadful test here.

So I started out my day like any other day, you know my routine. But today I needed to call the insurance company about some claims and make a few appointments as well. I started with the insurance company. I am pleasantly (insert sarcastic laugh here) greeted by the worst sounding automated greeting ever. Please say your 186 digit ID number and press pound (for those under 20, pound is a hashtag #, lol!)  Twenty minutes later, I complete the request and Sally Static-a-lot repeats it back for confirmation. OK, correct. I am making progress. Next, please say your birthdate. I clearly say December 28, 1971. Sally repeats back. “You said your date of birth is September 28, 1921. Is that correct?” No Sally, that is not correct. Please repeat your date of birth. Again, December 28, 1971. Sally once again repeats September 28, 1921. Now I am getting aggrivated. I repeat once more in the most over enunciated fashion ever. Still, this dumb b%$ch gets it wrong. Now I start yelling CUSTOMER SERVICE. CUSTOMER SERVICE. CUSTOMER SERVICE. (Hint – this works with some systems. I think they realize you are a bit off and step it up at this point). Sally asks me to hold. I put the phone on speaker now realizing that it will be a while. I am kept entertained by a static riddled version of Barry Manilow’s Mandy. I have to say I kind of enjoyed that. Maybe they are right and I am a bit off. There is a break in the music, I am starting to get excited, the wait is over. I take the phone off speaker and put it to my ear, frantically say hello twice…and Johnny Matthis has now taken the phone hold stage. What the? I put the phone back on speaker again. We dance this little dance a few more times. I am really getting frustrated now. This time was different. There was a break in the music, I put the phone to my ear and…it is ringing. A person is actually going to answer my call and help me. I clear my throat ready to speak and grab my paperwork with a slight smile of relief on my face.

hold music

Then it happens – the ring stops..this is it…finally. And then I hear…beep beep. The bastards disconnected me. Are you freaking serious?! All of that…for this? It was like preparing for a bad date, shaving and all, even though you really didn’t want to go with the guy, and then he doesn’t show up!

It’s going to be one of those days. I hate Sally!

Woohoo! My life is a blog!

“Spare” me the throat clearing… — August 9, 2015

“Spare” me the throat clearing…

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I woke up this morning in anticipation of my exciting day. We are going to a very special birthday party this morning for one of our sweet little flower girls…completely Adorbs! Then, mom’s birthday dinner. But before all that can happen….

I spent 25 minutes this morning coughing and clearing my throat. One of the many “benefits” of having pulmonary fibrosis. I’m sure my family gets sick of hearing it. They have to! I personally want to punch myself in the throat with total annoyance of the repetitive sound! It eventually subsides so I can get on with my day.

Last night the whole family was home. Tyler and his sweet girlfriend, Kelsey, and Jake and one of their lifelong friends, Nate. They planned to see a movie. Like a good mom, I bought them the tickets and let them take my car. About 10 minutes after they left, Kelsey called. They had a flat. If you remember I alluded to my vacation tire issues…well apparently the problems are continuing. So…here’s the complete tire story.

We had just arrived in Ocean City, NJ, very excited to start our annual family shore trip. While unpacking and setting up my IV pole and feeding pump, I realized I had packed everything, but the pump’s power cord. How stupid could I be?! Tim and I went to the local drug store and searched for a cord that would work. We hid in aisles and carefully unpacked any razor/water pic/cordless phone/radio we could find to try to match up the cord. Of course, if we found the right one, we would also be the proud owners of whatever it was supposed to go with. But, no luck. We left the store, pump in hand, cordless and sad. This was on a Saturday so overnighting from home wouldn’t have gotten the cord to us til Tuesday…just not an option. My wonderful husband offered to get up early the next morning, drive home, retrieve the cord and come back. Isn’t he awesome? He said he could be back before the kids even woke up. 7:30 am on Sunday he started his recon mission. He made it home in record time and started his return trip to the shore. Twenty minutes into his trip, he got a flat. He called me from the side of the road. Ergh! Of all things to happen! He got the spare on the car and drove to the only tire store open on Sunday morning. Of course the tire was shot and needed to be replaced. But as an added bonus, my alloy wheel was also cracked. They didn’t carry the wheel so told him that he should be fine on the cracked rim with the new tire and to just check the air pressure daily. He drove off with the new wheel ready to smell the ocean air. Until 2 miles later when he had another flat! Wtf?! This time, spare went back on and I told him to just drive back to the shore on the spare and we would find a VW dealer there. Thank God! He made it back on the spare. I started my search for local VW dealers. I was thrilled there were two that were somewhat local. I called Monday morning and ordered my new rim. How much did you say that was? $389? OMG! Had no other choice so I ordered it. It came in the next morning  and they were going to put on the last new tire and we would be on our way. Easy enough, right? Ha! Do you not know my life yet? Things are NEVER that easy! They took the car in, the newest of my tires was shot! It’s short 2 mile life lived in vain. So, another new tire on my baby. Ok…all is good now. Or is it? Next day, didn’t really drive much. The following day we were headed to Wildwood for dinner and the boardwalk. It’s something we do every year and we always enjoy it. Well, 10 minutes into our journey you will never guess what happened! Ding ding ding! Winner!!!! This time…it was a complete blowout. Just have to show you this:

 Really? This is freaking insane! Back to to VW dealership. They claimed the tire was defective so they replaced it and assured us the car was structurally sound and sent us on our way.

It’s been almost a week since we drove the VW home from our vacation. Fast forward to last night’s tire debacle. At midnight, I watched my car get towed away to the VW dealership, only 9k miles, where it will live until they figure it out or give me a new one.

All in all, a very exciting weekend. Now onto the birthday party! Happy birthday sweet C!

Woohoo! My life is a blog!

Kind of missed you guys… — August 8, 2015

Kind of missed you guys…

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Thought I wouldn’t blog today but…here I am! Woke up oddly early this morning . It’s no wonder. I feed at night. God that sounds like I’m a vampire. But in layman’s terms: I am hooked up to my feeding pump all night. You have to really pee to cart that heavy lug of an IV pole down the hall and back. I had to but…just couldn’t drag myself out of bed. I guess you could say the bladder was willing but the Tubie was weak.

Have I told you I have 2 dogs? Miniature poodles. Adorable! They are from the same litter although, one is much larger than the other. Nibbles is the bigger girl, Chocolate is the tiny one. Don’t judge the names. My sons named them when they were young kids. The dogs don’t help the sleep situation in our house. Tim and I have a full size bed. It’s fine for the two of us but much to Tim’s dismay, it is NEVER just the two of us. I always have to have the dogs in bed with us. It didn’t start out that way. They used to sleep in the crate at night. Until I came home from one of my many hospitalizations and explained to my hubby that it would me feel better faster to have the pups in bed. Nibbles and Chocolate have never spent another night in the crate. Where was I going with this? Oh! Yes. They take up a lot of the bed. They have nightmares and kick their feet. They are scared to death of storms. And they are very skilled at letting us know they have to go out. Not subtle at all…they sit on Tim’s chest and lick his face until he gets up. Works like a charm so I don’t suppose it will change.

Anyway, we went to Longwood Gardens this morning. It is a beautiful place to walk and enjoy the beautiful flowers and plants. During the winter, the conservatory area is warm and toasty and smells like a bouquet. We were (un)lucky enough to be there during an outdoor childrens rock concert. We, of course, didn’t attend but the music (term used loosely) filled the morning air. We had to sneak in and check out what individuals could be emitting these screeching sounds. Expecting to see people in costumes or band made up of girls…they are all Middle Aged men. How in the hell did their voices go so high? We entertained ideas of what could make that happen…all possibilities made us laugh. Best part was when they broke into ACDC’s Back in Black! What the f? But the kids were going wild. Go figure!

Side note, as we were sitting on a bench talking like an old senior couple, I remembered on old toy. Tim never heard of it. It was a “wiggly” worm kind of you that you could never grab. It would always slip out of your hands. Not sure what made me think of that. Did you ever have one? I think I might go on Amazon and order one. Will keep you posted on that.

Came home after that. Honestly, too exhausted to do anything else. When we walked in the door, my mom was grooming the dogs. Now that is a freaking shit show! Poodle hair everywhere! I just wanted to rest but had to jump in and assist in the sheering of the sheep. Should have taken a picture of all of the hair. Could have made two more dogs out of it.

Oh yea…here are a few pics from our morning.

Me & Nibbles
My Mom’s bday cake, beautiful huh?

Just thought I’d share with you…kind of a selfie Saturday. Enjoy your weekend!

Woohoo! My life is a blog!

Happy Saturday! —

Happy Saturday!

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My family, My heart My family, My heart

Thank you all for reading my posts this week. Please keep it up and share, share, share! A new blog post will be up on Monday. My mom’s birthday is on Sunday. We are taking her out to dinner. Wait til you hear more about momma! I could do a blog completely on her. She’s funny without trying…or realizing it.

I plan to post Monday through Friday. Have an awesome weekend!

A Day in my Life — August 7, 2015

A Day in my Life

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I wake up in an insane about of pain after sleeping in 87 different positions trying to find relief from pain all night. But the key words were – I wake up! Always a good start to the day.

You know when you wake up in the morning and you really have to go to the bathroom? You are practically walking with your knees together. Yes. That was me this morning. But add to that…THE POLE! No more getting anywhere quickly for me. Not like I was sprinting anywhere anyway but add the IV pole to the mix and it is a circus act. I wish (or not) that someone could video this process. My original pole generously provided to me by my insurance company was so large that I couldn’t fit it down the hallway. Seriously! I live in a 115 year old house, very narrow hallways. So I would have to pick up and walk my pole around like a dog. A big awkward dog with tubes all over.  My incredible mom (Cathy) bought me a very compact based really sturdy pole. Thank God for her! Sadly, it won’t roll down the hall because of the carpet so now I am walking a slimmer dog that has packed on some major pounds. But, I make it there and all is good.

Next, tube care. Tubie life is a much different life and all of the maintenance and care steps are critical. SO you have to flush your tubes. This just simply means flushing water through the tubes via a large syringe to keep the tubes free from clogging. Sounds easy enough right? I thought so too…in the beginning. Until my tubes overflowed on me about eight thousand times. Now, I have the trick. No one tells you the trick. You have to learn on your own. Because I love you all, I will share. Hopefully you never need it. You must hold your breathe and not talk during the whole time your tube is open. You can bet your bottom dollar that this is when someone will ask you a question, your phone will ring, you will cough or worse yet, sneeze. What a shit show that is!

Now on to medications. I lay out my meds on the counter. To the passerby-er, it may appear I am setting up to play a good ole game of mancala. Nope! Just taking my morning meds. Since the addition of my tube, I have the option to grind my pills, mix with water and syringe them into my tube. As much fun as that sounds, I chose to still swallow them. After all, I can’t eat. At least it is something going into my stomach. I am a fat girl at heart!

Are you still with me? Bathroom – check! Tube care – check! Meds – check! Next – shower. I am lucky enough to have had some modifications done to my house to make life easier for me. My favorite of these is my built in shower seat. Makes me life so much easier. Because of my depleted energy level, I still have to decide between showering and washing my hair or showering and shaving. Sadly for Tim (my hubby), my hair always smells wonderful and my legs look like Sasquatch.

Time to make my way down the stairs. Without a doubt, my mom will be at the bottom of the stairs to greet me with the biggest smile and a hug. I love my mom! This is not just an occasional occurrence – this is EVERY morning! And I wouldn’t have it any other way.

With all of that done, I make my way to the sofa to start my day aka take a nap. zzzzz!

Woohoo! My life is a blog!

 So, I have Sclero-what? — August 6, 2015

 So, I have Sclero-what?

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This is the blog that I would have to say is “Just the Facts”, not at all fun. But also necessary to know. I know this doesn’t explain specifically a day in my life but don’t you worry your sweet little self about that…there is always tomorrow. Hint, hint

If I am going to get a disease, it would have to be one that no one has ever heard of and no one can pronounce. Let me tell you about Scleroderma pronounced (skleer-oh-DUR-muh). Scleroderma is a an autoimmune disorder that the body’s immune system turns against itself. In Scleroderma, there is an overproduction of abnormal collagen (a type of protein fiber present in connective tissue). This collagen accumulates throughout the body, causing hardening or sclerosis, scarring or fibrosis, and other damage. On a bright note, my skin looks marvelous, not a wrinkle on it.

For some there may be hardening of the skin. For others, it involves other body organs – lungs, heart, hands (through Raynaud’s which affects the circulation of blood to the extremities causing numbness, gangrene and sometimes loss of digits. On another note, I have really bad Raynaud’s. I get digital ulcers and ultimately get admitted into the hospital to go through an infusion that opens the vessels to help promote circulation and healing. On a funny note, I have taken viagra for this same condition. It didn’t help me but boy did I have a stiff neck. Haha! Get it? Stick neck, viagra?! I digress. It attacks lungs causing fibrosis, shortness of breath, coughing an difficulty breathing. It can also affect the kidneys. And the GI tract is commonly attacked. In my case, I developed gastroparesis (stomach paralysis).This prevents my food from digesting.Thus, the addition of my tubie friend. I feed through a tube into my small intestine and drain my stomach through another tube. I also have esophageal dismotility causing me to aspirate into my lungs. For me, I have lung involvement (Pulmonary Fibrosis), Raynaud’s (digital ulcers), Sjogren’s Syndrome is also an auto immune disease which people’s white blood cells attack their mositure producing glands. This also causes dry eyes, dry mouth and fatigue. I also have a mass in my brain which just likes to mess with my head, no really, brain fog, ringing in the ears, etc. I once went to a doctor that chuckled when he told me that I had hit the negative health lottery. I smiled and said Uh, Thank you?

But allow me to rant for a minute. This is my day today. Woke up dealt with my tube, I fed overnight last night. Took a handful of my medications and went into super mom mode. Child B had locked keys in his dads car ignition with no spare. I went to his dad’s house and called AAA to save the day. Little did 6’10” Keith know when he pulled up in the tow truck that he had just entered the “clusterest” of all cluster F’s. He was eventually (30 minutes later) able to roll down the window of my ex-husbands truck with some long metal contraption and open the car. One obstacle down. I haven’t told you the other part, Child A broke down on the side of the highway and his car was sitting on the small shoulder of the road waiting to be rescued or towed away by the police. Figured we should avoid the latter. Keith, what a guy, offered to follow us there and tow the car back home. Of course as we approach the car, Child B says, hmmm, we probably should have brought the keys with us. Oh, Keith had another surprise waiting for him. He popped the lock on that car too, only to have the most annoying alarm blaring obnoxiously. It finally stopped on it’s own. We didn’t even know the car had an alarm. Car was pulled onto the tow truck and away it went. As we are following, my air pressure indicator light came on in my car. ARE YOU FREAKING SERIOUS? Without going into the whole story, I had 2 blow outs and a cracked rim on my new car last week during vacation to the tune of $850! And now the air indicator light?

How much wine can I get through my feeding tube?

Woohoo! My life is a blog!

Where to begin? — August 5, 2015

Where to begin?

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Now I am really excited about this blog! Turns out it is much easier to use a keyboard then to use an iphone but had to go with the impulse last night!

So, now I have been thinking. Where do I bring you all into my story? I have decided to start at the time of my diagnosis but as any of my friends will tell you, “SQUIRREL!”, I am easily distracted. I have so many stories about my life. Some involve the illness, many don’t. For whatever reason, I have been blessed with a life that my closest friends have told me should be recorded. Is that a good thing? Eventually, you can tell me. Expect to read about my journey with Scleroderma and Tubie life, as well as some of my other life experiences. Life with a chronic illness can be very depressing, this blog will not.  I am a fighter and love to look at life through positive eyes.

Now, back to my diagnosis. It was about 6 years ago. As with most moms (and adults in general), we put our own needs last. I was in a lot of pain for a while and finally decided I should find out why. Like a good internet user, I had researched all of my ailments and believed I was either really constipated or had Lyme’s Disease. Went to the doctors and who the hell knew what a can of worms I was opening. But, so glad I did. After many specialists and enough blood drawn to question what they had left me with to function, I got a call. I will never forget that day. Let me not minimize the process. The tests and appointments went on for about 6 months before the call. I was so frustrated during that time that I will just gloss over it. The call. I was at work, the local rheumy diagnosed me with Scleroderma on the phone. I,of course, had read about it and heard about Bob Saget’s sister that had died from Sclero. I didn’t want this illness. What if I hang up? Maybe he’ll call back with a different diagnosis. Then the line that has been burned into my head. The doctor told me, there is no cure. There is nothing we can do for it. You should take Tylenol. Excuse me? What the hell are you talking about?! I call bullshit! And good thing I did. I immediately went to my family doctor and we started the process to get me into a good hospital to find out facts.

That’s a whole different story. After waiting to get accepted into Johns Hopkins Sclero program, I found out my insurance wouldn’t cover it. Scratching my head and wondering what I did to piss God off, I made an appointment at Jefferson Hospital. This is when I met my current rheumy. It was a good day. No Tylenol. More tests. More blood drawn. More answers.

Woohoo! My life is a blog!

Tubie or not Tubie —

Tubie or not Tubie

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Hello world! This is my very first blog post. Allow me to introduce myself and give you a little info about myself. My name is Joey (yes, I am a female named Joey. My mom didn’t want another son and yes! I know joeys are baby kangaroos). Now that we got that out of the way…I am 43 years young and have systemic scleroderma, sjogrens, raynaud’s, pulmonary fibrosis, and severe GI issues including gastroparesis.

I always wanted a smaller waist and to eat less, be careful what you wish for as I also have a feeding tube. Not what I had in mind when I thought about eating less. But if anyone can rock the tube, I will!

My hope for this blog is to raise awareness about these illnesses in my own way, very straight forward and sometimes a little wacky. After all, I have to live this life with these illnesses, I have to be able to laugh at myself. Who in the hell wants to cry? Not this chicky! And if I’m lucky, I can make you laugh too. I have a real good feeling about this…