Friday, May 28, 2010

A Diagnosis...Stop Complaining!

Just so you know...this isn't really about me and my diagnosis...please keep reading.

I finally have a diagnosis...

I have RA, rheumatoid arthritis. So now I have 2 chronic auto-immune diseases.  A few hours after the discovery, the initial shock had worn off (thanks to the support from my sister and my friend Carrie), I was fine with it.

I had recently found an old childhood friend, through Facebook. I have not spoken to her since we all left for college in 1984. I had no idea what had been going on in her life since. Then, later that same day, I finally got the email that told me what she'd been doing. I found out that she had started having seizures in 1988 and her last seizure was in 2004. Wow...she'd been having seizures for 16 yrs!

Crohn's...nerve damage...RA...That's OK. I can deal with it.  Compared to having your life being indefinitely put on hold  for 16+ yrs...I'm "over" any of my problems. I'll definitely be able to deal with it now. There are other people who have it worse than me.

It's kind of funny (or should I say ironic)...yesterday I was telling 2 women in their 50's about my diagnosis...and the one said to me..."I'm never complaining about my ailments definitely have it worse than me."  When I think about my friend Julie, I think the same thing. Then, this morning she (Julie) sends me a copy of an essay explaining what has helped her get thru the years. I'd like to share it with you...

Julie Gittens

COMPLAINING --- The Webster Dictionary definition is “to express dissatisfaction, pain, uneasiness, censure, resentment, or grief; find fault”. It’s something we all do. In fact, some of us do it more than others and it’s driving them (and you) crazy. So the question you have to ask yourself is “How Do I Stop Complaining?” Well, the answer isn’t simple or easy, but it is there. It really just depends on your situation and what you’re complaining about. Let me explain…

You see I like to tell people I’m on hospital parole, because back in the 90s, I did a lot of hospital time. Why? Because I was diagnosed with idiopathic epilepsy. That means I was having multiple seizures (usually while I was asleep) and there was no known cause. The worst part about having the seizures was I always had to do hospital time afterwards. And that meant spending days in the hospital in a bed hooked up to an EEG machine because back then they didn’t have portable ones. So trust me, I did a lot of complaining in the 90s, until I had to spend three weeks in a particular hospital.
I stopped complaining after being in this particular hospital thanks to three incredible people. Three wonderful young men. I met these young men (all younger than me, ages 7, 18 and 19) when I was hooked up to an EEG machine at Helen Hayes Hospital in Rockland CountyNY. Please know that Helen Hayes Hospital is probably one of the best-known rehabilitation hospitals on the East Coast. In fact, today most of its patients are Iraqi War Veterans.

Well, back when I was at Helen Hayes, suffering through being “locked” in a bed with nothing to do, one day that all changed. How? Well, because a young boy, Daniel, age 7, wheeled himself into my room and asked me if I wanted to come to the rec room and play. I had to explain to him as much as I loved to go there and play, I couldn’t; I couldn’t get out of my bed and then I pointed to the EEG machine.
Daniel said, “Okay” and wheeled off.

But then the next day, the most amazing thing happened. Daniel came back. He said, “Julie, since you can’t come to the rec room and play with me, I’ll just come here and play with you.”
And everyday, on his way to his therapy class, he’d stop in and say hello. When I asked him, why he was in the wheelchair, he explained to me that his legs weren’t completely developed and he was waiting to have surgery. I also found out that his family lived up in 
BuffaloNY (4 hours away) and that his parents had to visit him on alternate weekends because one of them had to stay at home with his brothers and sisters. I was lucky enough to meet Daniel’s parents, but I’ll tell you about that later.

Now Daniel wasn’t the only one to come into my room and hang out with me. You see, three days after Daniel started to visit me, another guy wheeled himself into my room. This young man, who’s name was Tyrell, was 19 years old and African-American. He was also paralyzed from the waist down. Tyrell was from the 
Bronx and he got caught in a crossfire hanging out with some friends who had made robbery their career choice. Tyrell told me he didn’t know what he was going to do with his life now. He thought it was over; after all he couldn’t walk. Well, lucky for me, I was able to talk Tyrell into changing that point of view.

How did I do that? Well, I had been a student at 
Syracuse University (yes, I spend five years of my life in the Cold, Rain and Snow of Syracuse, NY) and my major was film theory. Film theory, what does that mean? It means I got to watch a lot of very good movies. And one of those movies was Hal Ashby’s “Coming Home”. “Coming Home”, I’m sure you’ve heard of it or seen it. It won three Academy Awards, Best Actor (Jon Voight), Best Actress (Jane Fonda) and Best Screenplay. It lost the Best Picture nomination to “The Deer Hunter”. Another anti-war film.

I told Tyrell about “Coming Home” because I wanted to explain something to him. I told him about Luke Martin (the character Jon Voight played). I told him that Luke Martin was just like him, paralyzed, and he hated his life. That Luke Martin had no goal in life; that he believed in nothing, until he met Sally Hyde (the character Jane Fonda played). I explained to Tyrell that the reason why Luke Martin changed his outlook on life was because Sally Hyde did an incredible thing for him. And that incredible thing was, that while he might not believe in himself, that didn’t matter because Sally Hyde believed in him. She loved him even if he couldn’t walk. I told Tyrell he had to start seeing life the same way Luke Martin did. He had to realize that one day somebody was going to fall in love with him; and she wasn’t going to care if he could walk or not, but she sure as hell was going to wonder if he could make her dinner.

The other young man I met at Helen Hayes was Kevin. Kevin was 18 years old and wheelchair bound because he had Multiple Sclerosis. Kevin, like Tyrell, would wheel himself into my room to talk with me, but Kevin was doing something very dumb, too. Instead of going to his classes (yes when kids are in the hospital, they still have to take their school classes), he was coming into my room to hang out. That was fine, but as I said it was also dumb, because of something Kevin told me.

Kevin was a senior in high school (remember high school?) and he’d be graduating in June. Then Kevin told me that the only thing he wanted to do was walk up and get his diploma. In fact, he said he was going to do just that, that’s why he was taking an extra physical therapy class. Well, after he said that, I started laughing.
“You think that’s funny,” he said, “that I want to walk up and get my diploma.”
“No,” I replied, “what I think is funny is that you think you’re going to get a diploma?” And then he looked at me funny, perplexed.
“Kevin,” I said, “how the hell are you going to get your diploma, if you’re coming in here to hang out with me instead of going to your classes? Remember, in order to walk up and get your diploma, you not only have to take those physical therapy classes, but you also have to take the other ones, too. Physical therapy isn’t going to get you your diploma, but English and Math will.”
And after that, Kevin started going to his classes. He also come to my room at night and asked me to help him with his homework.

Remember, I mentioned Daniel and his parents earlier? Well, Daniel did something I’ll never forget; something that was remarkable. In fact, it drove me to change my whole outlook on life. As I mentioned earlier, I was hooked up to an EEG machine. I was hooked up to it for three weeks, because they were running tests to see if I could be a candidate for surgery. Unfortunately, they told me no. But that’s a story for another day. While I was waiting for my test results, Daniel was supposed to be having surgery; but Daniel decided to wait to have his surgery until I was done with my testing. Why? Well…

Daniel’s surgery was to have pins put into his legs to straighten them and then he’d learn how to walk. He would be walking for the first time in seven years. The amazing thing was, that while his parents had to make special plans so they could both be there to watch him walk after his surgery; Daniel wanted me to be there too. He said he’d wait until I was unhooked from the EEG machine to have his surgery because he wanted me to be there to watch him walk for the first time, too. I didn’t know that. In fact, I never would have known it if it weren’t for what happened the day Daniel took his first steps.

That morning, the nurse came into my room, at this point in time, I was unhooked from the EEG waiting to go home later that day, and told me that Daniel would be taking his first steps soon. He wanted me to be there to watch. So I went to the physical therapy room to see Daniel.
  After I walked in, a woman (someone my age) walked over to me said, “Julie?” and smiled at me. She introduced herself as Laura, Daniel’s mother. Then she pointed to the man standing next to her and said, “This is Rich, Daniel’s father.”
While Rich shook my hand, he said, “so you’re the one.”
“Huh?” I said.

“You didn’t know that Daniel was suppose to have his surgery last week, but he asked them to change the date for you.” I shook my head. “Yeah,” Rich said, “ Daniel asked them to postpone his surgery for you. He said he didn’t want to have it until ‘Julie was out of her bed’. He said he didn’t want to do it unless Julie could be here to watch, too.”
“Thank you,” Laura said, “you made my being away from him a lot easier.”
And with Daniel’s parents, I watched Daniel stand up and walk for the first time.

Well, later that day, my mother came to pick me up and I did something for the first time, too. My mother asked me how I was feeling and for the first time in my life, I didn’t complain. I didn’t say anything negative.

In fact, here’s what I said, “I know one thing, I’m never going to complain about being in the hospital again.” My mother looked at me funny. She had gotten the same news I had that I wasn’t a candidate for surgery, which meant I’d be having more seizures and doing more hospital time.
“Really? You’re not?” she asked.
“You want to know why?” I asked. “Because I’m doing something amazing. Something that made me realize I’ve got nothing to complain about. Do you realize that most of the people in this hospital are wheelchair bound? They’ll be leaving one day, just like me, only one thing will be different. They’ll have to be wheeled out. Me, I can walk out. So as much as I want to complain about being in the hospital, complain about what the doctor told me, that’s irrelevant. It’s irrelevant because I’m doing something most of the people I just met won’t ever be able to do. I’m walking out of the hospital. So now it doesn’t matter to me how many times I’ll have to spend in one, because of one very simple thing. I’m doing something most of the people here won’t ever be able to do. I’m walking out of the hospital. And as long as I can walk out of a hospital, I’ve got nothing to complain about.”

So, after that day, I changed my outlook on life. I did stop complaining. I suddenly realized that while I may have it bad; somebody else has it a whole lot worse. I learned how to be thankful for what I had; I learned how not to complain about what I didn’t have. I stopped looking at the big things, the things I didn’t have and I started focusing on the small things, I realized that it was the small things that were going to pull me through.
I realized I had to start looking at life like the passage in the bible says, “If you have faith as small as a mustard seed, it is enough. Nothing will be impossible for you."

When I read it I was in awe...I hope this makes you think has certainly helped me! Julie is my
"wheel chair bound" person.

(And for allowing me to share it on the web.)

If you enjoyed this have Julie's permission to share it as well...

Monday, May 10, 2010

Getting ready?

Does this look like getting ready to go?

I was trying to go buy the kid new Crocs...which he asked for (he's grown out of his old ones)...therefore, this shopping trip is for him. he getting ready to go?

I don't think so!

Appointments, Appointments!

OMG! I don't think I've ever had a week with so many appointments squished in. I will definitely need to get lots done at home today.

Starting on Tuesday...Remicade (3 hours of sitting with an IV in my arm), physical therapy (traction), podiatrist (for son, and he's probably gonna act much younger than he is when the doctor takes out the nitrogen), doctor (for son), neurologist (for me, FINALLY! and I have to go alone, even though I don't want to), golf class (for other son, I hope the field isn't mushy), hair appointment (for me, to get rid of the grey), hair (for son), massage (okay...2 hrs of torture) and finally, well visits for both boys.

But you know what?

 The boys are camping together this weekend and Pete and I get a whole weekend alone. We'll be childless from Friday evening until midday on Sunday. We get to do what ever we want, when we want, without having to wait for the boys to be ready to go.

We are just hoping for great weather too....Is that too much to ask? Probably...