Johns Hopkins Part 2

As part of our trip to DC, I had a follow up appointment at Johns Hopkins.  Philip and I drove up to Baltimore.  I wasn't sure how long it would take so we took our time and got there with plenty of time to drive around a bit, have a great lunch, and  check into our hotel.

We were starving so we used Yelp to find a restaurant for us for lunch.  We ended up at the Capital Grille which is a fancy steak house. We were in shorts and T-shirts but they seated us and we had the best burgers ever!!  It was a real treat.  We were shocked that it cost $17 to park the car for 1.5 hours.  No wonder people don't drive much!  After that, we headed to our  hotel to check in.  Much to our surprise, we were 1.5 blocks from the Oriole's stadium and there was a game with the Yankees that night.

 

Phillip's.  Philip recognized this building from searching for concerts in the past. 

We headed over to Johns Hopkins Myositis Center.  We got there about 30 minutes early but that did not result in us getting seen early.  In fact, Dr. CS was running about 2 hours late.  That is a bummer but I had a book to read and Philip had his tablet.

When she came in, you would never know she had been running all day.  She was very impressed with my weight loss.  She was also amazed I was able to get that special test.  I was the first person she had seen or heard of that was able to get it done.  She commented on my tenacity.

We agreed I do have IBM (as I already knew) but also she thinks I have PM and that is why I am responding to the Methotrexate.  She said she had another patient in the past that was similar to me. We talked about how we don't know everything about Myositis but there are others like me and we are still learning.  I probably have some different form of Myositis or IBM that hasn't been discovered yet.  She had just returned from a  symposium in Sweden on Myositis.  She said others are seeing people like me.

She also explained that IBM seems to impact women different than Men.  Women don't seem to get it as severe.  She said also you see people with IBM that plateau and then have a steady and steep decline only to plateau at that level and then a rapid decline again and again.  But then there are others that don't decline that way and while they decline, it is a slow yet steady decline.  A decline over years and  years.  I want to be that second track.

We also talked about work and how working can have a huge impact on stress and ability to cope and deal with this nasty disease.  She encouraged me to give it some thought.  That IBM is not difficult to prove permanent disability.  I agreed to consider it but I wasn't ready yet.

She also asked if I was going to the Myositis conference in Orlando in September.  I haven't given it much thought.  But she stated I should give a session on being your own advocate.  I hadn't thought about that but I probably do have something to share about that.  If I am offered a scholarship from the Myositis Association, I will offer.   It might be fun.

She asked if I would come back in 6 months to see how I am doing and do some work with their PT and OT.  They are doing some work on special exercises for people with Myositis that help with stamina without wearing out muscles.  She thought they could help me fine tune my gym routine and help me feel better.  So I am headed back in November on my way to visit Nola for the scrap book retreat at the beach.

It was a good visit.  Very optimistic.  Philip got to finally see what it is all about. Dr. CS was very friendly with Philip and wished him great luck in his educational pursuits.