Thursday, December 30, 2010

Not a new year's resolution

Instead this is a decision I have to make. It seems every year at this time I'm digging myself out of a rut. A rut of laziness. I haven't been reading, blogginf, or anything else productive. My days have been filled with mindless television. I am excited for my appointment at RIC next month and hope getting a voice to text program tailored to my needs and will help me in being productive. Here's to a productive 2011. I hope everyone had a great Christmas a fabulous new year! I

Tuesday, November 23, 2010

Dentist, RIC, & Family

Saturday, October 23, 2010

Ampyra & Vision

Thursday, October 14, 2010

Couldn't Blog

Thursday, September 23, 2010

Why my silence?

I know I've been kind of silent on my blog lately.  One post a month, geez!  There are a couple reasons for this.  One being the difficulty I have typing.  My voice to text program sucks!  Two being my project:  writing a book.  It's been a long time coming.  I used to mention it in posts from time to time, but haven't in awhile.  The old adage "Don't talk about it, Be about it". has been my motto.   My good friend Bob has been working with me on this from the start.  We have found a good rhythm over the past couple of months.  To never have written a book, to now writing one has been an interesting  journey in itself.   I'll keep you posted when we are done writing, the publishing progress, and when it's ready for purchase.  I'm hoping for next summer, but we'll see.  I've learned in life to have a plan, but definitely be flexible.  Life is a fluid situation, go with the flow.

Monday, August 09, 2010

Guarded optimism

Today I was called by my specialty pharmacy and informed I was approved for Ampyra. That was quick. Exciting to get approved and get started tomorrow. I'm hoping it helps in the areas of my visionn, hea3ing, speech, and dexterity. Although that's my hope I'm starting this drug with a definite guarded optimism. Let's hope for the best.

Friday, July 23, 2010

Ampyra & Navy Pier

Yesterday was an appointment with Dr. D. It started as always with a nurse checking my vitals and having me do a timed 9 pin hole test. My blood pressure was elevated again, so that’s another thing for me to be cognizant of. The 9 pin hole was about the same. Encouraging for sure. As always I like to joke around and this nurse was a target. Not knowing my health situation she asked if I could walk at all. I said no, but thanks for bringing up a sore subject. She was all apologetic. I had to tell her I was totally joking with her. C’mon laugh! She was uncomfortable for3 sure. Now my time with Dr. D was good. We joked around with each other as always. During our conversation we talked about a new MS drug. Ampyra is nicknamed the walking drug. It’s helped people with MS in their walking, not get those in wheelchairs back up walking. She said it takes awhile to get insurance approval or denial (3-6 weeks). There isn’t any data on it helping with vision or speech yet. I asked if I could take it. She was on bord with that. So she’s getting the info lined up for insurance. Fingers are crossed that I get approved. After the appointment we headed over to Navy Pier for lunch. It’s ben around 7 years since I’ve been there. It was a nice time and a nice day to be out. Getting Garrett’s popcorn to bring home was a nice way to end a good day. Yum!

Tuesday, July 13, 2010

Pissed off!

Yesterday was a day for me and Emily to just hang out. Breakfast out, a couple hours with our niece and my sister Kim, later we saw “Despicable Me”and then dinner at Hooters. This was our first time seeing a movie at the newer facility at the Louis Joliet Mall, very handi friendly. The movie ended up being better than I expected. All that was great. Here’s what pissed me off: Being in a wheelchair. It’s a rare day I when I feel this way. I let my mind wander back to my younger, healthier days and thus allowed that PO’d feeling in. Yes, I’d rather be walking, but I’m truly happy where I’m at. I’m always an open book and I really wanted you to see all sides of dealing with disability. As positive and upbeat as I can be I do have a time when I feel defeated once in a while. Having a strong, loving wife as I do helps those down moments easier to get through. I love you Emily!

Friday, July 02, 2010

Family

I think turning 30 gave me a new perspective in life.  Having family in your life is really important.  At my wedding last year I had two of my uncles and their wives and my cousin from southern Illinois fly up for the wedding.  Having them there along with other family members I haven't seen in some time really whet my appettite for more.  Last weekend Emily and I headed south for a family reunion weekend.  It was so great seeing aunts, uncles, cousins, and others I haven't seen in years.  Introducing Emily to them was great.  My cousin Tom sent me an email after we left saying how good it was to meet Emily and how nicely she fits into the family.  That was so great to hear.  Next week I'll have pictures up on Facebook.  I have some memorable pics-the one I'm most excited about is with my dad's siblings.  I look forward to making that weekeeend a regular trip. 

Monday, June 07, 2010

Comfortable

This weekend my niece Grace had her 6th birthday party. It ended up being a great day to be outside, at least for the couple hours of the party. It seems to be the season for “luau” themed parties this year as my niece Bianca is also having a “luau” 2nd birthday party this coming weekend. There were some of Grace’s friends parents that were there partaking in the festivities as their children played. While we were partaking in the food, punch and conversation I had a bit of an out of body experience. I looked down at myself and smiled. Usually when I drink I need to use two hands to steady the liquid, when eating my hand is shaky and slow to my mouth, and I talk slower. Even with all that happening I didn’t feel self-conscious about this for the first time. Yes, I’ve grown more comfortable over time. This was my first time where I accepted me as me. What a feeling! I finally accepted myself.

Wednesday, June 02, 2010

Busy June

This is gearing up to be a busy month. There are my two nieces birthday parties, a weddiiing, and two family reunions. I haven't been to the family reunions in eight years. I'm really looking forward to going. Two of my uncles and two of my cousins came up from southern Illinois. That rreally whet my appetite for family. I can't wait! The older I get the more I desire to be close to family.

Wednesday, May 19, 2010

A Blessing

On June 17th my niece Bianca will turn 2. My sister Kim is instilling a practice in her: giving. You can read moreb here about Bianca's Blessing. Please join in and be a blessing!

Tuesday, May 04, 2010

MarianJoy

My MIL Nancy has a friend that is there for a couple weeks. Though it sucks she broke one leg badly and has damage to the other one too. This brought me to a bit of nostalgia on my time there four years ago. It was my third stop on a journey through four facilities. I was there one month, it was a great time. When I was there I was focused on getting up to walk again. Though I did that some, it was not to be. They taught me how to live at a wheelchair level. At the time I learned that, it was not my focus. In hindsight being there and learning what I did was the best thing for me. To Marian Joy, thanks for all you did for me!

Tuesday, April 13, 2010

Growth

Yesterday I had an appointment with Dr. A. I haven't been there for an appoitment in nine months. Going to his office is like seeing family. Seeing him is like talking with an uncle. We mainly just caught up about what's going on in life. When we did talk about my health he said how much better I looked in my trunk. That was good to hear and true. Riding in the van works my trunk. So it's been good for more than getting mobile more often. After the appointment we went out for lunch. As I was eating, my head was shacky and w1eak. I thought for a minute are people looking at me? As I thought that I quickly thought, good. Let 'em look. I didn't care. I usuallys care, but yesterday I idn't. Finally when getting home I got up to my apartment door and was really feeling weak. I knew it would take me a while to unlock the door and get inside. There was a lady that was leaving our neighbors apartment. I didn't hesitate to ask her to unlock my door. She graciously did so. So I felt growth today in my dealig with my disability. What a great day!

Wednesday, March 31, 2010

A new freedom

In the past week and a half I have found a new freedom. Getting our WC accessible van has afforded us that. Our nickname for the van is the Bizzle Bus. I have gotten out of the house a few times since. Normally it takes some planning and preparation for getting out. To me it had to be back breaking for Emily. Helping me to get into her Saturn, packing up the wheelchair. Getting to our destination and doing the same in reverse. Not to mention if I physically didn' feel good it was even harder on Emily. To make it even better I have a power chair too. We had purchased that for the wedding weekend and now are really getting our moneys worth. To go out now I just get into the power chair, wheel up the ramp and get locked in place, then away we go. I'm so happy about the Bizzle Bus and power chair for many reasons like thefreedm they allow me. Most of all the stress it takes off my amazing wife. Now perhaps I'll see you out and about.

Monday, March 29, 2010

Enjoy life

Here's my Monday morning cup of Joel.
Life's got a handful of ,ountain top moments-marriage, job promotion, birth of a child, etc. Life's made up of a lot of smaller moments. Learn to enjoy those moments. It's the old adage, "stop and smell the roses". Take time to enjoy the journey. Enjoy the ones on the journey with you-your spouse/significant other, children, parents, etc. Having goals and your mind on the future is great. But it means nothing if you don't take time to enjoy the moments along the way. Let's tell those close to us how much they mean to us. Enjoy thejourney you're on, it's the ride of your life!

Monday, March 15, 2010

Cup of Joel

It's easy to be me. Being someone else is not. I am equipped to deal with everything in my life. Dwelling on the I wish's will get you no where. I wish I was taller, I wish I could sing, and on and on. You have exzctly what you need. This is an area that plagues us all. There's always something we wish for. We need to be happy with who we are and what we have. Taking our natural and letting God add his super to create the supernatural. Let's all step in to our destiny. Whether it's being an entrepreneur, great mother, author, singer...Let's be who we were created to be.
My Monday morning Joel.

Monday, March 08, 2010

On Purpose

Last night I went to bed determined to start anew today. I have fallen into a rut lately. A rut of watching TV and really not being productive with my day. My first goal was to watch my Joel Osteen recording. A new one is reported on my DVR every Sunday. I usually get to it later in the week if at all. First goal accomplished. My second goal is to give a brief synopsis here. The message today was about being happy. That's an easy statement to make, but at times a difficult task to walk out. Abraham Lincoln once said, "most people are as happy as they decided to be". Easily put, being happy is a choice you have to make every day. Life may be hard for you right now. Maybe you lost your job, perhaps your family has fallen apart, or your health is failing? No matter what. it's your choice. Having or getting the right perspective on your life situations will help you to be happy. I like to think of myself as an overall happy person, but I have those dark moments. When I get there it helps to be thankful for the little things. A quote I heard years ago said, "it's not the outlook that matters, but the uplook". I agree partially with that statement. Yes, keeping your eyes on God is number one, but having a positive outlook is good too. I know just thinking about a positive future has helped get me through. So lets be happy on purpose today.

Thursday, February 11, 2010

Bowling, Twitter, and a Van

Man it's been a bit busier for me again. It seems like things just went to a screeching halt after all the wedding preparations. Last weekend I went bowling for the first time in the wheelchair. It was a work thing for Emily. We bowled three games. Though it was fun Emily and I realized we are not good bowlers. We do pretty good on Wii bowling though. Now on to Twitter. I've decided that I'm done with attempting to be a tweeter. It's just too much. A van is now on the horizon for us. We decided to take the leap into a wheelchair accessible ride. This will help in getting me out of the house more often. We are buying a van from my cousins dealership in chicago and then getting it modified through Mobility Works. Once they get the van it'll take 4-6 weeks. So that's what's been going on lately.

Monday, January 25, 2010

Game on

Thursdays appointment with my neurologist went well. It was the usual check-up. How's everything going? Anything new to report? Check my strength and my vision. Those two areas seemed to be about the same as last summer. Being as I've been on an MS med for 5 months now she wants to see me a little more frequently. Just keep an eye on things. The possibility of getting an MRI this summer seems high. I asked a year plus ago to be put on an anti-depressant. It definitely goes hand in hand when getting on aMS  medication. I've had many dark thoughts over the years. I was telling Dr. D a recent realization I had. Being on the anti-depressant has been a great thing. I really haven't had those dark thoughts often at all. She said she wanted to record that and let other patients hear that sentiment. I'm not a fan of taking medications, but when it helps my quality life then game on.

Wednesday, January 20, 2010

5 Months

Tomorrow I have an appointment with my neurologist. I just see her twice a year as follow-ups now. Actually its been that way for a couple of years. In preparation I've been analyzing where I am physically compared to where I was last time I saw her. Part of me thinks I'm about the same, perhaps a little worse. Maybr I think a little worse because I'm so hard on myself. I did look back and realized I've been on an MS medication for 5 months now. I do feel since starting the medication I've allowed myself a chance to get better. The medications' goal is to slow the progression of the disease. Perhaps I can even get a little better over time. I'll see what my doc sees tomorrow.

Wednesday, January 06, 2010

Sight vs. Vision

I try and watch my cheerleader pastor every week. That's how I refer to Joel Osteen. After listening to one of his sermons you feel empowered. You can overcome any obstacle, be a better person, grow closer in a relationship with the Lord. A quote he used last night was this: Sight is what you can see, Vision is what you can be. That hit's where I am and more clearly got the point across. Looking at your surroundings and circumstances will only let you get so far. Vision is what helps you to go farther in life. When your sight sucks like mine vision is all I really rely on. That's the bright side of a tough situation. Making lemonade is the way to go. Wherever you are and whatever your circumstance always remember your vision in life and don't dwell on what you're seeing