Reno without Keno

Last weekend, Mom and I headed to Reno to the annual Myositis Conference.  It was held at the Peppermill Resort which is an absolutely beautiful hotel.  We booked a room close to the conference center so we were away from the casino and lots of the riff raff which was nice.  Our room was absolutely beautiful with 2 king beds, a sitting area, and flat screen TV.  The bathroom was huge with 2 double sinks and a Jacuzzi tub.  I think the bathroom was as big as my entire bedroom at home.

I did not go to the conference last year but this is the 3rd conference I had attended.  It was good to see so many people again.  There were also many new faces.  Many newly diagnosed people.  New Medical Board Members.  And some new information.  There were 375 patients/caregivers there in attendance.  This is amazing considering we all have a disabiling disease that makes movement difficult little alone traveling.

Myositis is very rare.  About 1 in 500,000 people get Myositis.  It is tough to find anyone that knows anything about it.  Myositis is an auto-immune disease meaning your body begins attacking itself.  It is in the Muscular Dystrophy family.  It mimicks ALS and often comes with other auto-immune diseases like Lupus, Arthritis, or even Lung and Heart issues.  There are three classifications of Mysoitis:  Dermatomyositis, Polymyositis, and Inclusional Body Myositis (IBM).  Derma attacks your skin and muscles.  People get mechanics hands and rashes on their faces and arms.  They are sensitive to light including normal room lighting.  Polymyositis is me.  It impacts proximal muscles (shoulders and hips) but will impact all muscles so things like swallowing, breathing, heart function, bowels, digestion, etc are impacted.  And then the IBM is a complete muscle failure.  People with IBM decline quickly and there is no treatment or help for them besides trying to make them comfortable.  The only treatment for these diseases are designed to compromise the immune system (turn it off if you will) so it will stop the vigilant attack on your own body.

When I started attending the conferences, the medical advisory panel was trying to establish treatment protocols.  They were thinking there were more then 3 types of myositis and there was tons to learn.  Since my first conference in Las Vegas 4  years ago, they have developed some treatment protocols and they have done much work on identifying different antibodies we have present that can help predict the disease's path.  This can be helpful when trying to figure out the right medications to try or to help the patient plan for their future.  It is great to see all this work done to help us...even though we are a tiny underdog population of very sick people.

You would think this would be very depressing.  But I can't tell you how powerful it is to see and talk to people that are having the same issues as you.  I only know of 1 person in Utah that has Myositis.  You never see it.  You never hear about it.  You often find doctors that know nothing about it.  Most ask me what it is.  So being around 375 people that talk like you and walk like you is amazing.  People are surprisingly upbeat about life even though we are facing such a serious medical condition.  You begin to look past the people in scooters or wheelchairs.  Those that wear long arm gloves to cover their skin.  The limping and slow walking.  People that need someone to lift them out of a chair because it sits too low (even though it is normal).  People that struggle to pour themselves a glass of water.  Or people that struggle to cut their own meat.  It becomes an environment of sharing and support.  It is a place to let down your guard of bravery and independence and allow people to see the sick you.  The you that can't stay up past 9:00.  Or just can't make it to conference room 1 because it is too far away.  Or the you that will skip that afternoon session because you are better off with a nap ...or two.  It is nice to relax and be yourself. 

It is an extremely supportive environment where everyone is trying to learn as much as they can to help them maintain life and learn from each other.  I learn lots in the sessions but I learn even more from talking with people.   Tips and tricks for every day life.  How they take their medications and what medications help them feel the best.  Most people share their journey too.  These journeys are tough and they suck and you just simply can't believe what they have gone through.  It is really an amazing group of people.

There is a core group of people I've been meeting since Las Vegas that I first met online in an online support group.  These are my core people....my inner circle.  I know any time of day or night, I can email them or call them and they will be there for me...and me for them.  These are amazing fighters that despite what they are going through every single day, they focus on the positives and celebrate each day.  This trip, I added one more person to my inner circle.  These are my people....

This is Ann. She is a single lady living in San Diego.  Ann has PM but also has lung involvement.  She struggles to breath and function and it has started impacting her heart.  She had a job very similar to mine but she had to go on disability 2 years ago.  We are meeting next week to talk about my "exit plan" from work.  I want to know how she did it so I can start planning for when I can no longer work.  She is amazing and has 2 of the cutest dogs in the whole world.  Her laugh brings me so much joy.

This is Randy and Jackie.  Randy is part of my core group I met online in 2010.  He lives in NM.  His disease was so bad that when I saw him in Orlando, he was barely mobile with a cane.  He is only 32 and has been unable to work.  He spent 3 months in the hospital when he was first diagnosed and was forced to move in with family for 2 years.  He is finally able to live independently and just moved to his own apartment on 8/1.  This was a huge goal for him.

The other lovely lady, Jackie, is the new addition to my circle.  I first met her at the conference in Orlando 2 years ago.  She lives in Atlanta.  She was a flight attendant for Delta for over 20 years.  She is one of the most elegant people I've met.  And boy does she have the gift of conversation.  She brings that "southern" flare I love.  Jackie has PM too.  She was a quadriplegic for 2 years and had to have 24 hour care provided.  Her husband of 20+ years left her in the middle of the night when she was first diagnosed.  She is a strong woman, has the warmest heart, and is mobile and able to get around. The disease forced her to retire from Delta but it did not steal her zest for travel.  She is on the go and promises we will travel together one of these days.

I didn't get a photo with Shawna.  She is a non-working RN living in Santa Rosa.  She is a wealth of information.  She has DM but it has attacked her muscles so she uses a scooter to get around and she has oxygen she must use.  She has developed a host of other problem including sensitivity to dyes in medications, foods, and clothing.  She is eating vegan and says it has been a life saver for her.

At the conference, they have multiple sessions running through the day.  My goal in attending (in addition to seeing my friends) was to learn about any new research going on, see if I can learn about options for living arrangements as I decline, and continue my quest for information.  I checked off those boxes as well as participated in a Focus group on how the disease impacts us.  Mom participated in some of the sessions with me but also stayed active in the caregiver sessions.  She also took the water aerobics classes 2 days in a row.  The conference provided breakfast and lunch each day which was nice.  We met up with my friends during the evening for dinner except one night.  One night Mom and I went to the seafood buffet.  There was also a Hot Air Balloon race each day we could see from our hotel room.

Hot air balloon race over the city

The casino....or at least a little part of it.

The buffet.  I called it the Disco Buffet because it reminded me of that.  Then every 20 minutes or so, strobe lights would flicker and there were be a broadcast sound of thunder.  Just to add to the ambiance.  So cheesy!

We had a great time and flew home Sunday.  It was nice to fly instead of drive.  We both got home completely wiped out and exhausted. 

I do want to share this sweet little photo.  We got to the airport about 2 hours early.  When we got to the gate, there was a......ummm.....woman there talking to another couple.  This woman was clearly born a man and somewhere along the way, made the switch. But she never gained the feminine traits.  Mom and I both sat and listened and observed.  She was headed to Rome!  She wore a peculiar bun in her hair.  And then it hit me...Mrs. Doubtfire!  We just saw the real life Mrs. Doubtfire.  So fitting with Robin Williams recently passing.  Rock on Mrs. Doubtfire....Rock on!

OHHHHH!  And one of the best things ever happened at the conference.  The head of the Myositis Center at John Hopkins has agreed to see me and provide me a consultation!! She is not accepting new patients and is notoriously difficult to get in to see.  But she is doing studies on Rituxan and since I got Myositis while I was on Rituxan, she wanted to meet with me.  She can't see  me until after the first of the year (her appointments are often a year or more out) and I will have to pay out of pocket since my insurance won't cover it.  But I am so excited to see an expert and see if we can fine tune my diagnosis and treatment plan.  This is HUGE!