upcoming MDA events

I wanted to put the word out about a couple of fun MDA events coming up.

 

Denver Muscle Team Gala

When: Tues. Nov. 18th, 5:30PM – 8:30PM

Where: Infinity Park

Address: 4400 Kentucky Ave., Glendale, CO 80246

Website: click here

RSVP: Lindsay Molloy before Wed., Nov. 12th. tel: 303-691-3331

Denver Muscle Team Gala

 

We would like to invite all MDA families to join us for the MDA Muscle Team Gala. This event was created to raise money for MDA’s Summer Camp program and recognizes a few campers each year as MVPs. The event is at Infinity Park in Glendale. It is a fun tail-gate themed evening and attire is jeans and jerseys or tailgate casual.

The idea is that we pair local summer campers up with local professional athletes but at our event, the summer campers are the stars of the show. We are pleased to announce that we will have Marcelo Balboa (former Rapids player), Ryan Spilborghs (“Spilly’ former Colorado Rockies player), Cameron Flint (Denver Outlaws), and many other athletes in attendance.

We will have awesome food, drinks, tail-gate games, a photo booth, and a silent auction. It will be a blast. We would like to invite all MDA families to enjoy this event for a special price of $50 per ticket. This is a discount from the original price and is only for MDA clients and their immediate families. Visit our website for additional information.

 

MDA Denver/Fort Collins Holiday Party

When: Sat. Dec. 6th, 3:30PM – 5:30PM

Where: Cherry Creek High School (West Cafeteria)

Address: 9300 E. Union Ave., Greenwood Village, CO 80111

RSVP: Emily before Fri., Nov 21st. elyneis@mdausa.org tel: 303-691-3331

MDA Holiday Party

 

Please join the MDA for our annual holiday party, food will be provided and there will be a special visit from Santa.

A personal Blog post

I have always been an introverted person and also very stoic. I blame this somewhat on my Irish heritage where guys simply don’t discuss their feelings. Blogging takes this to a new level. While I don’t have a problem discussing my ups and downs with dermatomyositis, there are somethings I have kept very reserved. I am acutely aware that anyone can read your Blog post, including your employer. It then becomes a fine line on how much I want to divulge. But here goes!

When I went to see my primary care physician some months ago, he made a comment that still resonates with me. “Do you need to be on so many pills?” It was a weird thing for a physician to say, but I understood where he was coming from. None of us wants to be unnecessary taking medication.

As well as dermatomyositis, I have high cholesterol and high blood pressure. Despite trying to change my diet and watching my weight I could not get around these without taking medication. The ‘discretionary’ medication I am on is anti-depressants and sleeping pills.

I never felt I was depressed with the flare-up and it took a long time for me to be convinced to go on anti-depressants. What is not in dispute is that I could not stop my swearing and outbursts. It was tough on Nicole and I did it in front of my 5-yo. Prednisone is a big part of it. Anti-depressants did suppress my outbursts. I went back to work this month, which is going well. Also as you may have read in my last Blog entry, finally I feel I am coming out of my flare-up. Two weeks ago I convinced myself I am fine and stopped the anti-depressants. Lo and behold I am back to my ornery self this week. Anti-depressants are no longer discretionary.

Prednisone also plays havoc with my sleep. To compound matters I have severe sleep apnea. With all my various ailments and having cancer in the family, nothing frightens me like sleep apnea. I have no doubt my dad had it. He was a very loud snorer and would try and nap on his lunch break most days from the shop. He never had it treated. Years later he suffered a number of mini-strokes to the brain and eventually had to go into full time assisted living. The last time I saw him, he could not talk, walk or feed himself. He just stared at me intensely as I spoke to him. Rightly or wrongly I am convinced that sleep apnea contributed to his strokes.

Two sleep studies have confirmed I have severe (hyper) sleep apnea. I have been using a CPAP for at least 2 years. These machines can be a bit like Big Brother as they record when and for how long I use it. They are also difficult to sleep with. I seem to go into a dream state for hours and not go into a deep sleep. Howevers my sleep doctor tells me I am sleeping a lot better based on the data she downloads from it.

I take Ambien to combat the prednisone and somewhat the CPAP. The drug is habit forming, so now and again I stop taking it and see how I sleep. The nights I don’t take it, such as tonight, I don’t sleep. Ambien is currently not discretionary either. Hopefully this will put my primary care physician’s comment to sleep.