Rebif, Ampyra, & South Beach

Being diagnosed with MS for about two years now has been a freeing experience for me.  I've been able to focus on getting better and just how to handle the day to day.  No longer be concerned with the thought of what is this I'm battling.  Taking Rebif, an MS medication to help slow down or even stop the disease from progressing, for around  one year continuously.  I really feel like it's been working.  I haven't been fighting just to stay above water for once.  Rebif, I take 3 times a week, in a shot.  The one down side to it is how I feel the day after.  Ugh!  I usually feel like crap..  That's a small price to pay though.  I am taking a newly approved MS drug called Ampyra in conjunction with Rebif.  It's nicknamed "the walking drug".  I've taken it for three weeks now.  I feel str6onger when standing every night before bed.  Not to say I see walking in my future.  Though I do notice an enhancement in my vision, things at times seem to be in high-definition.  So, that's encouraging to see4.  Also, Emily and I have4 started on The South Beach Diet, it's been a good thing.  Losing weight while in a wheelchuair has been tough, but the SBD seems to be a good thing.  Props to Emily doing gretat on it!

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.

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!

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!

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. 

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.

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.