“Permit” me to share….

First let me say – Happy birthday to the best Mom in the world!

Next stop…CRAZYTOWN! All aboard!

Woke up Monday morning and waited for a call from the VW dealership about my car. Since, as you know, it was towed there Saturday night. No call! So, I called them.

Asked for the service department and inquired about the status of my car. The service adviser said he knew nothing about my car. Oh…you haven’t looked at it yet, right? No no no…THEY DIDN’T HAVE IT! The adviser told me that he didn’t have my keys, paperwork or my car. Great! My car problems just went from annoying tire issues to a missing vehicle. Do I call the police? Drive around in my invisible car and look for it? Good morning, Joey, welcome to your Monday!

I called the towing company and inquired about the car. They said the paperwork says it went to the dealership so they would call the driver and see what he did with it. He was a part-time driver and who knows what he did with it. That’s very comforting. Forty five minutes later…no call from anyone. I grabbed my phone and went to my VW app to call and complain when I remembered the app has a locator option. Why didn’t the VW dealership suggest that from the start. Turned out…I held the power to find my car in my own hands! I got an address where my car was parked. I googled the address…Guess where it was? It was still at the towing company. I called them again…they said they were holding it there. Uh…why? But the good news was that my car is no longer among the missing. I will actually see my car again! Oh yeah…I will actually see my f’d up car again. Exciting and then…not so much.

After my call to VW corporate, my case has now been opened, escalated and is being reviewed. It better be a quick review. I have to be in Philly tomorrow for wound care for my tube site. Did I tell you about that? Last week, I went to the hospital to have my stoma (tube site) looked at. It had developed granulation tissue which is very painful. The tissue was very small but hurt like a bitch. The physician’s assistant used silver nitrate to “burn” the tissue off. The next day, the whole site was burning and raw. Turns out, she treated the granulation tissue plus the intact skin around it so that the whole site was now raw. Ow! I have a pretty high pain threshold and this left me breathless and cursing. I called the PA and she said “Oh sorry I tried to wipe it off but must not have gotten it all” and then giggled. There is nothing funny about this lady. I giggled in a “I’m going to hurt you kind of way” and hung up. Now, wound care is in order. Funny thing, I just need a car to get there.

When it rains it pours!

Woohoo! My life is a blog!

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!

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!

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!

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…