San Diego handicap style

Last week was the Myositis Association's annual patient conference.  This year it was in San Diego so it was a no brainer that Mom and I wanted to go.  I was not too excited because it was held at the Sheraton literally across the street from the airport but let me tell you, the hotel did not disappoint. It was right on the bay. The really nice thing about these conferences is they work very hard to make sure the hotel and conference areas are completely handicap accessible.  And indeed it was.  And 500 Myositis patients and caregivers showed up.  It was the largest conference to date.

Mom flew through Salt Lake and we met at the airport taking the same flight to San Diego.  It was actually a good flight and we got into San Diego just in time for lunch.  We figured there would be better options in the airport than the hotel.  We enjoyed a lovely California burger and a delicious ceasar salad.  Then we headed to the hotel.  We laughed when it ended up being 5 minutes from the terminal.  This particular Sheraton is on the Marina so we had a lovely view of the boats and ended up having a stunning view of the sunsets.  We were lucky enough to have a view of the marina from our balcony patio which we felt very lucky for.

Mom and I.  We made it!

View from the room patio

We jumped into the conference that afternoon and had sessions about Inclusional Body Myositis (IBM) which I have.  We met other IBM patients and their caregivers.  Mom went to the Caregiver session.  We met my Myositis friends for dinner in the hotel.  We've been meeting at the conferences for 6 years.  We've known each other for about 7 years.  Both live in California.  We all have different forms of Myositis but we still share information and support each other.  The great thing is Mom knows these ladies too from prior conferences so it is like old friends.

Mom, Ann, Shawna, and Me

The next day, Friday, we had a full day planned starting with an early morning session at 7:00.  We started with a meeting about Medications and Treatments.  Then we had a nice sit down breakfast (can't have a buffet with 500 handicapped people!!) a session on aging in place, and then I attended a session on Social Security Disability while Mom went to water aerobics taught by a wonderful woman that has made disability exercise her expertise (we've met her before at the conferences).  A sit down lunch and then I went to a class on nutrition and supplements for inflammation support (I will never cook with Extra Virgin Olive Oil again).  Mom went to a session on accessible home design.  We met up for a session on skin issues for auto immune patients.  I happened to walk into the room that Mom was in.  Mom is so cute, she was visiting with some young women who were sisters and supporting each other as one has Myositis and one has Lupus!  I see Mom offering so much support to people.  Always a counselor!  That was a full day as we finished at 5:00!  We decided to eat in the hotel again as we had no transportation and anything else sounded too exhausting.  (We did entertain the idea of getting a rental car and heading up to La Jolla for dinner but neither of us had the gumption to actually do it.)

Gorgeous sunset from the restaurant

A few minutes later.  It simply can't get better thant his.  This is no filter on my camera!

Oh wait.  The next night was spectacular too.  Seriously more than I can take.

Saturday is always the big day as they bring in the Medical Advisory Board.  This is literally a board of 20 doctors that have dedicated their career and interests to figuring out Myositis.  There is so little known about Myositis and isn't really even covered in Medical School so there is so much to learn.  There are doctors from all over the US but also Sweden, France, Amsterdam, and London.  This is a big deal because they really are pioneers and doctors from out of the US are not held to the FDA and medical structure like in the US so they often have different experiences and knowledge than the US doctors have.

The medical board.  They literally hold the hope for treatments and
solutions to this terrible disease in their hands.

What is really amazing is these doctors introduce themselves, let you know what they are interested in and studying, and leave lots of time for questions.  Then they stay and give sessions about different topics.  Seriously you could not get access to these people if you tried outside of the conference.  My wonderful doctor  at Johns Hopkins used to be on the board but they limit the time on the board so others can join.  It was interesting to hear what was going on and who was working on what.  This alone is worth the cost of attending the conference!  One of the doctors was working under my doctor at Johns Hopkins!  There are still not any doctors out my way but luckily, I can still travel when needed.

We attended a Q&A with two experts from the Medical Board about IBM.  Then I attended another session by a past board member on progress and research in Myositis.  Mainly it sounds like the clinical trials they have done have not met the trial criteria so they were deemed unsuccessful.  Also, there is dire need for funding for research.  There is no money and little interest from the public and pharmacies for such a rare disease.  But the TMA pushes forward anyway funding as much as they can and raising funds.  We attended a session with the French physicial on Promising Research in IBM (there is none but they are hopeful).  It was a great day and I got my questions answered.  I learned tons and made a huge list of information and questions.  But wait, we aren't done yet.....

Sunday, we skipped the  morning sessions.  Just too tired.  But we did have another sit down breakfast and then met the TMA Board of Directors.  These are people passionate about Myositis and support the efforts of the TMA.  Both the Medical Board and Board of Directors are volunteers and are NOT compensated for their efforts with the TMA.  I was pretty impressed with that.  There was an afternoon session but we had to beat feet to the airport for our flight home.  The San Diego airport was so crowded and the line in security was ridiculous and not air conditioned.  We were anxious to get through the line.  We grabbed some lunch before boarding the plane and making our way home.

I am so thankful for Mom joining me and helping me not only travel but being there to listen and take an interest in this really depressing disease that is attacking me.  It is overwhelming to see the other patients.  So many are not doing so well.  But everyone is hopeful and doing their best to be their very best self.  There are loved ones with them helping them and caring for them too.  So many are in Jazzys or using walkers, or just really struggling.  But there are others like a woman named Martha that is still kicking it almost 100%.  Her only problem is swallowing (that's all....as if that isn't a big enough deal).  There are also people that are literally hanging on by a thread emotionally and came to find SOMETHING hopeful.  I think that is where we all come in.  We support each other and show others how we are living with a very serious and very debilitating disease with little to no knowledge, only borrowed treatments, and no cure.  I was feeling pretty disabled but it doesn't take long at one of these types of conferences to figure out you are doing so much better than others and we share information and help each other.  It is actually really inspiring.

I walked away with a whole 8 full pages of notes. I have a list of questions to take with me to Johns Hopkins later this month. I met about a dozen people from Utah that have this disease too (I used to be the only one at the conferences), 2 new Facebook groups to support each other.  And I promised Bob who is the Executive Director of the TMA that I would pursue a support group in Utah.  I reached out to my new Facebook group and the leader of the group was very excited to run a support group and will formally connect with the TMA.  So highly successful.  I'm so glad I went.  We didn't get to explore San Diego but we came home more enriched and lifted.  Unfortunately, both Mom and I seem to have caught colds while gone and have had a miserable week.  The downside of venturing out.

I really crack up wondering what it is like to have so many disabled people in one spot at the same time.  And imagine those that are just traveling and end up at the hotel and see 500 disabled people all together.  The amount of scooters, walkers, and canes must look like the hotel turned into a rest home!  Haha.